ORCID Profile
0000-0002-3691-8230
Current Organisation
Queensland University of Technology
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Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 2007
DOI: 10.1097/00005082-200701000-00009
Abstract: Theoretical frameworks provide a structure for the planning and delivery of nursing care and for research. Heart failure (HF), a condition of increasing prevalence in communities internationally, is responsible for high rates of morbidity, mortality, and great societal burden. The HF illness trajectory can be unpredictable and uncertain. Markers of transition, such as functional decline and increasing dependence, can signal the need for transition to a more palliative approach. This transition challenges clinicians to deliver information and interventions and to support patients and their families not only in relation to their physical status but also in the social, psychological, and existential dimensions. This article describes a theoretical framework, Maintaining Hope in Transition, informed by transition theory, to assist patients to cope with a diagnosis of HF and to guide development of nursing interventions. Transition theory provides a useful context to assist clinicians, patients, and their families adjust to the challenges inherent in a diagnosis of HF and negotiating the illness trajectory. Key factors acknowledged in the Maintaining Hope in Transition framework that determine its utility in models of care for HF patients are (1) acknowledging the changing of life circumstances, (2) restructuring reality, (3) dealing with vulnerability, (4) achieving normalization, and (5) resolving uncertainty. It is likely that incorporation of these factors in care planning, information, and interventions can facilitate patients' and their families' abilities to negotiate the HF illness trajectory, particularly in the advanced stages.
Publisher: BMJ
Date: 04-01-2018
DOI: 10.1136/BMJSPCARE-2017-001417
Abstract: Opioids are a high-risk medicine frequently used to manage palliative patients’ cancer-related pain and other symptoms. Despite the high volume of opioid use in inpatient palliative care services, and the potential for patient harm, few studies have focused on opioid errors in this population. To (i) identify the number of opioid errors reported by inpatient palliative care services, (ii) identify reported opioid error characteristics and (iii) determine the impact of opioid errors on palliative patient outcomes. A 24-month retrospective review of opioid errors reported in three inpatient palliative care services in one Australian state. Of the 55 opioid errors identified, 84% reached the patient. Most errors involved morphine (35%) or hydromorphone (29%). Opioid administration errors accounted for 76% of reported opioid errors, largely due to omitted dose (33%) or wrong dose (24%) errors. Patients were more likely to receive a lower dose of opioid than ordered as a direct result of an opioid error (57%), with errors adversely impacting pain and/or symptom management in 42% of patients. Half (53%) of the affected patients required additional treatment and/or care as a direct consequence of the opioid error. This retrospective review has provided valuable insights into the patterns and impact of opioid errors in inpatient palliative care services. Iatrogenic harm related to opioid underdosing errors contributed to palliative patients’ unrelieved pain. Better understanding the factors that contribute to opioid errors and the role of safety culture in the palliative care service context warrants further investigation.
Publisher: Springer Science and Business Media LLC
Date: 08-04-2022
DOI: 10.1186/S12913-022-07840-7
Abstract: Lymphoedema is a common, distressing and debilitating condition that can be related to cancer and its treatment or other conditions. Little is known about current practices in the diagnosis, assessment and management of lymphoedema in low- and middle-income countries (LMIC). To describe current practices in diagnosing, assessing and managing cancer-related and other forms of lymphoedema in LMIC, and related barriers and facilitators. An exploratory-descriptive qualitative study. Participants were lymphoedema experts or health care professionals identified via published lymphoedema papers and professional organizations respectively. S ling was purposive to ensure a ersity of perspectives and experience. Data collection was via semi-structured telephone/video interviews, and questions canvassed participants’ experiences and perceptions of lymphoedema care in LMIC. Interviews were audio-recorded and transcribed verbatim. Analysis proceeded via inductive coding before mapping codes to the World Health Organization’s (WHO) Innovative Care for Chronic Conditions Framework. Nineteen participants were interviewed, most of whom were physiotherapists ( n = 11). Ten participants worked permanently in a LMIC, while the remainder were based in a high-income country (HIC) and had been involved in initiatives to improve lymphoedema care across multiple LMIC. Participants indicated that management of cancer versus non-cancer related lymphoedema was similar, but that pathways to care were more straight-forward for those receiving cancer care, leading to earlier diagnosis. Key facilitators to optimizing lymphoedema care in LMIC included: 1) joining forces to overcome lymphoedema-related stigma 2) building workforce capabilities and 3) partnering with patients and families to support self-management. Ideas for building workforce included developing health professional knowledge, supporting a commitment to multidisciplinary team care, and adapting HIC guidelines for lymphoedema care to LMIC. Partnering with patients and families to support self-management involved following the person-centred approach, establishing clear communication, promoting adherence to management, adapting management to available resources, and involving patient family and friends in lymphoedema care. Raising community and health professional awareness regarding lymphoedema and its management is a key first step to improving care outcomes. Resources for clinicians and patients/families developed for lymphoedema care in HIC need to be adapted for low resource settings.
Publisher: Elsevier BV
Date: 02-2013
DOI: 10.1016/J.JPAINSYMMAN.2012.02.017
Abstract: Systematic reviews and meta-analyses suggest that community specialist palliative care services (SPCSs) can avoid hospitalizations and enable home deaths. But more information is needed regarding the relative efficacies of different models. Family caregivers highlight home nursing as the most important service, but it is also likely the most costly. To establish whether community SPCSs offering home nursing increase rates of home death compared with other models. We searched MEDLINE, AMED, Embase, CINAHL, the Cochrane Database of Systematic Reviews, and CENTRAL on March 2 and 3, 2011. To be eligible, articles had to be published in English-language peer-reviewed journals and report original research comparing the effect on home deaths of SPCSs providing home nursing vs. any alternative. Study quality was independently rated using Cochrane grades. Maximum likelihood estimation of heterogeneity was used to establish the method for meta-analysis (fixed or random effects). Potential biases were assessed. Of 1492 articles screened, 10 articles were found eligible, reporting nine studies that yielded data for 10 comparisons. Study quality was high in two cases, moderate in three and low in four. Meta-analysis indicated a significant effect for SPCSs with home nursing (odds ratio 4.45, 95% CI 3.24-6.11 P<0.001). However, the high-quality studies found no effect (odds ratio 1.40, 95% CI 0.97-2.02 P=0.071). Bias was minimal. A meta-analysis found evidence to be inconclusive that community SPCSs that offer home nursing increase home deaths without compromising symptoms or increasing costs. But a compelling trend warrants further confirmatory studies. Future trials should compare the relative efficacy of different models and intensities of SPCSs.
Publisher: Wiley
Date: 11-06-2019
DOI: 10.1111/JAN.14039
Abstract: To explore the role of coping moderators in self-management of breathlessness crises by people with advanced respiratory disease. A secondary analysis of semi-structured interview data. Interviews with patients who had advanced respiratory disease, chronic breathlessness and at least one experience where they considered presenting to Emergency but self-managed instead (a "near miss"). Participants were recruited from New South Wales, Queensland, Victoria, South Australia or Tasmania. Eligible caregivers were those who contributed to Emergency-related decision-making. Interviews were coded inductively and then deductively against the coping moderators social support and dispositional coping style, defined by the Transactional Model of Stress and Coping. Interviews were conducted between October 2015 - April 2016 with 20 patients and three caregivers. Social networks offered emotional and practical support but also had potential for conflict with patients' 'hardy' coping style. Patient hardiness (characterized by a sense of 'commitment' and 'challenge') promoted a proactive approach to self-management but made some patients less willing to accept support. Information-seeking tendencies varied between patients and were sometimes shared with caregivers. An optimistic coping style appeared to be less equivocally beneficial. This study shows that social support and coping style may influence how people self-manage through their breathlessness crises and identified ways coping moderators can facilitate or hinder effective self-management. This study confers insights into how social-support and coping style can be supported and optimized to facilitate breathlessness self-management. Acknowledging coping moderator interactions is beneficial for developing resources and strategies that recognise patient mastery.
Publisher: Wiley
Date: 03-2015
DOI: 10.1111/IMJ.12677
Publisher: Elsevier BV
Date: 09-2015
DOI: 10.1016/J.COLEGN.2014.03.007
Abstract: There has been an increase in ethno-cultural, linguistic, and socio-demographical ersity in students enrolling in undergraduate nursing programs. Diversity also involves other characteristics, but little is known about how ersity impacts on the clinical experiences of nursing students. The aim of this review is to identify studies which describe the clinical placement experiences of nursing students who have a broad range of ersity characteristics. Major databases were searched and original studies published from 2003 to 30 June 2013 were eligible for inclusion. An expanded definition of ersity was used to include characteristics such as ethnicity, language, age, religion, gender, socioeconomic status, carer responsibilities, sexual orientation and special needs/disability. Male gender and speaking English as a second language are ersity characteristics associated with a less positive clinical experience. These students are also more likely to leave their nursing program. Mature-aged students and those from ethnic minority groups were also noted to have a less positive clinical experience and in some cases, this also increased attrition. However, it was difficult to determine the impact of these characteristics alone as they appeared to be linked with other characteristics such as financial difficulties and carer responsibilities in the case of mature-aged students, and language and international student status in the case of ethnicity. Given the significant benefits associated with preparing a erse nursing workforce, it is an imperative to better understand the impact of ersity on nursing students to ensure that every placement becomes a positive and valuable learning experience.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 05-2008
Publisher: European Respiratory Society
Date: 2016
Publisher: European Respiratory Society (ERS)
Date: 02-03-2021
DOI: 10.1183/13993003.04613-2020
Abstract: Oxygen therapy is frequently prescribed for the palliation of breathlessness, despite lack of evidence for its effectiveness in people who are not hypoxaemic. This study aimed to compare and contrast patients’, caregivers’ and clinicians’ experiences of palliative oxygen use for the relief of chronic breathlessness in people with advanced life-limiting illnesses, and how this shapes prescribing. A systematic review and meta-synthesis of qualitative data was conducted. MEDLINE, CINAHL and PsycINFO were searched for peer-reviewed studies in English (2000–April 2019) reporting perspectives on palliative oxygen use for reducing breathlessness in people with advanced illnesses in any healthcare setting. After data extraction, thematic synthesis used line-by-line coding of raw data (quotes) to generate descriptive and analytical themes. Of 457 articles identified, 22 met the inclusion criteria by reporting perspectives of patients (n=337), caregivers (n=91) or clinicians (n=616). Themes common to these perspectives were: 1) benefits and burdens of palliative oxygen use, 2) knowledge and perceptions of palliative oxygen use beyond the guidelines, and 3) longitudinal trajectories of palliative oxygen use. There are differing perceptions regarding the benefits and burdens of using palliative oxygen. Clinicians should be aware that oxygen use may generate differing goals of therapy for patients and caregivers. These perceptions should be taken into consideration when prescribing oxygen for the symptomatic relief of chronic breathlessness in patients who do not quality for long-term oxygen therapy.
Publisher: Oxford University Press (OUP)
Date: 30-07-2020
Publisher: BMJ
Date: 28-10-2023
DOI: 10.1136/BMJSPCARE-2020-002645
Abstract: To identify actions required to strengthen the delivery of person and family centred hospital-based palliative care so that it addressed the domains of care identified as important for inpatients with palliative care needs and their families. A codesign study involving a workshop with palliative care and acute hospital policy, consumer and clinical representatives in Australia. A modified nominal group process generated a series of actions, which were thematically analysed and refined, before being circulated to participants to gain consensus. More than half (n=30, 58%) of the invited representatives (n=52) participated in the codesign process. Nine actions were identified as required to strengthen inpatient palliative care provision being: (a) evidence-informed practice and national benchmarking (b) funding reforms (c) securing executive level support (d) mandatory clinical and ancillary education (e) fostering greater community awareness (f) policy reviews of care of the dying (g) better integration of advance care planning (h) strengthen nursing leadership and (i) develop communities of practice for improving palliative care. Changes to policy, practice, education and further research are required to optimise palliative care within hospital settings, in accordance with the domains inpatients with palliative care needs and their families consider to be important. Achieving these changes will require a whole of sector approach and significant national and jurisdictional leadership.
Publisher: Wiley
Date: 04-2008
DOI: 10.1111/J.1365-2648.2008.04600.X
Abstract: This paper is a report of a study to describe residential aged care nurses' and care assistants' perceptions of a multi-faceted palliative care intervention to identify potential areas to be addressed during subsequent action research phases. Action research was used to enhance the delivery of a palliative approach in residential aged care. The chronic care model guided the development of a multi-faceted intervention. This involved the: (1) establishment of a 'link nurse' role (2) learning and development strategies for nurses, care assistants and general practitioners (3) use of multi-disciplinary team meetings and (4) access to specialist consultation. A purposive s le (n = 28) of aged care nurses and care assistants participated in a series of four focus groups conducted in July 2005. Thematic content analysis of the transcripts was performed. Four themes emerged: (1) targeted education can make a difference (2) a team approach is valued (3) clinical assessment tools are helpful and (4) using the right language is essential. Participants described increased understanding of palliative care concepts, enhanced competencies, greater confidence to deliver palliative care and a desire to adopt a multi-disciplinary approach to care planning. Sustaining a culture that is committed to ongoing learning and development interventions and creating multi-disciplinary teams in the aged care setting is critical to embedding a palliative approach. The chronic care model is a useful framework to guide the development of interventions leading to better palliative care outcomes for residents and their families.
Publisher: Mark Allen Group
Date: 02-09-2015
Publisher: Springer Science and Business Media LLC
Date: 05-07-2018
DOI: 10.1007/S00038-018-1142-2
Abstract: To appraise improvement strategies adopted by low- and middle-income countries to increase access to cancer treatments and palliative care and identify the facilitators and barriers to implementation. A systematic review was conducted and reported in accordance with PRISMA statement. MEDLINE, CINAHL, and the Cochrane Library databases were searched. Bias was assessed using the Standards for Quality Improvement Reporting Excellence, and evidence graded using the Australian National Health and Medical Research Council system. Of 3069 articles identified, 18 studied were included. These studies involved less than a tenth (n = 12, 8.6%) of all low- and middle-income countries. Most were case reports (58%), and the majority focused on palliative care (n = 11, 61%). Facilitators included: stakeholder engagement, financial support, supportive learning environment, and community networks. Barriers included: lack of human resources, financial constraints, and limited infrastructure. There is limited evidence on sustainable strategies for increasing access to cancer treatments and palliative care in low- and middle-income countries. Future strategies should be externally evaluated and be tailored to address service delivery workforce information medical products, vaccines, and technologies financing and leadership and governance.
Publisher: SAGE Publications
Date: 10-11-2021
Abstract: This study aimed to describe Australian long-term care (LTC) personnel’s knowledge and attitudes concerning palliative care for residents with advanced dementia, and explore relationships with LTC facility ersonnel characteristics. An analysis was undertaken of baseline data from a cluster randomised controlled trial of facilitated family case conferencing for improving palliative care of LTC residents with advanced dementia (the ‘IDEAL Study’). Participants included any LTC personnel directly involved in residents’ care. Knowledge and attitudes concerning palliative care for people with advanced dementia were measured using the questionnaire on Palliative Care for Advanced Dementia. Univariate and multivariate analyses explored relationships between personnel knowledge/attitudes and facility ersonnel characteristics. Of 307 personnel in the IDEAL Study, 290 (94.5%) from 19/20 LTCFs provided sufficient data for inclusion. Participants included 9 (2.8%) nurse managers, 59 (20.5%) registered nurses, 25 (8.7%) enrolled nurses, 187 (64.9%) assistants in nursing ersonal care assistants and 9 (3.1%) care service employees. In multivariate analyses, a facility policy not to rotate personnel through dementia units was the only variable associated with more favourable overall personnel knowledge and attitudes. Other variables associated with favourable knowledge were a designation of nursing manager or registered or enrolled nurse, and having a preferred language of English. Other variables associated with favourable attitudes were tertiary level of education and greater experience in dementia care. Like previous international research, this study found Australian LTC personnel knowledge and attitudes regarding palliative care for people with advanced dementia to be associated with both facility and personnel characteristics. Future longitudinal research is needed to better understand the relationships between knowledge and attitudes, as well as between these attributes and quality of care.
Publisher: Springer International Publishing
Date: 2019
Publisher: Springer Science and Business Media LLC
Date: 02-07-2014
DOI: 10.1007/S11764-014-0378-Y
Abstract: This study aimed to explore differences in physical activity and fitness between women with metastatic breast cancer compared to healthy controls and factors associated with their physical activity levels. Seventy-one women with metastatic breast cancer, aged (mean (SD)) 57.7 (9.5) and 2.9 (3.1) years after the onset of metastatic disease, and 71 healthy controls aged 55.0 (9.4) years participated. Of those with metastatic disease, 27% had bone-only metastases, 35% visceral-only metastases and 38% bone and visceral metastases. Patient-reported outcomes and physical measures of muscle strength and aerobic fitness assessments were obtained. Participants wore a SenseWear® physical activity monitor over 7 days, and the average steps/day and the time spent in moderate-to-vigorous intensity physical activity were determined. Women with metastases were significantly (i) less aerobically fit than the control group (25.3 (5.4) vs. 31.9 (6.1) mL • kg(-1) • min(-1) P < 0.001) (ii) weaker (e.g. lower limb strength for the metastatic and control groups was 53.5 (23.7) vs. 76.0 (27.4) kg, respectively P < 0.001) (iii) less active, with the metastatic group attaining only 56% of the mean daily step counts of the healthy women and (iv) more symptomatic, reporting higher levels of fatigue and dyspnoea (P < 0.001). Women living in the community with metastatic breast cancer possessed lower aerobic fitness, reduced muscular strength and less daily physical activity compared to healthy counterparts. They also experienced poorer functioning and higher symptom burden. Women living with metastatic breast cancer may benefit from a physical activity programme to address their physical impairments.
Publisher: Informa UK Limited
Date: 02-07-2023
Publisher: S. Karger AG
Date: 15-11-2023
DOI: 10.1159/000527963
Abstract: b i Background: /i /b Genomics has growing relevance to palliative care, where testing largely benefits relatives. Integrating genomics into palliative care has not received the critical attention it requires. Health professionals report a lack of policy guidance to support them to overcome practice barriers to identify palliative patients who are eligible for genetic testing, provide genetic counselling, and facilitate genetic testing or DNA storage. b i Summary: /i /b To identify policy recommendations related to (1) integrating genomics into the care of patients with palliative care needs and their families and (2) care of the family unit, we performed a scoping review of palliative care and genomic policies. Two of 78 policies recommended integrating genomics into palliative care. Six palliative care policies mentioned genomics in background information but were without relevant recommendations. No genomic policies mentioned palliative care in the background information. Across all policies, “delivering family centred care” was the most frequent recommendation related to care of the family unit ( i n /i = 62/78, 79.5%). b i Key Messages: /i /b We identified a policy gap related to integrating genomics into palliative care. Without policy guidance, health services are less likely to commit funding towards supporting health professionals. Without funding, delivering the benefits of genomics to patients and relatives is more difficult for health professionals. Framing recommendations about genomics as family centred care may resonate with genomic and palliative care stakeholders. These findings highlight an opportunity to improve the policy landscape and access to genomic information for patients with palliative care needs. We call for incorporation of appropriate recommendations into palliative care and genomic policy.
Publisher: Cambridge University Press (CUP)
Date: 24-03-2023
DOI: 10.1017/S1478951522000360
Abstract: Studies identified barriers of pain reporting and use of analgesics impeding Chinese cancer patients to achieve optimal pain relief. No research has yet explored these issues in Chinese migrants, where cultural differences may exacerbate the barriers. To explore cultural factors influencing Chinese migrants’ perspectives to cancer pain and its pharmacological management. Informed by Leininger's Cultural Care Theory, focus groups and a short version of Barrier Questionnaire-Taiwan (S-BQT) were conducted in Mandarin or Cantonese, with 24 Chinese migrants receiving ambulatory cancer and/or palliative care services in Sydney, Australia. Integrated thematic analysis, descriptive statistics, and meta-inference were adopted for data analysis and integration. Participants suffered uncontrolled cancer pain negatively affecting their physical and psychosocial well-being. Most experienced moderate to severe pain, but only a third used opioids. Most adopted non-pharmacological approaches and half used Traditional Chinese Medicine. Participants scored a mean S-BQT of 3.28 (standard deviation ± 0.89). Three themes and seven sub-themes contributed to higher barriers of pharmacological pain management: (1) Philosophical health beliefs (cancer pain are self-provoked and body can self-heal) (2) Cultural values and beliefs (cancer pain is inevitable, and Chinese people express pain differently to local people) and (3) Conflicting views on the use of opioids (culture-related negative medication beliefs, Western biomedical model-related opioid fears, and opioids extend life for people with terminal cancer pain). Chinese migrants’ responses to cancer pain and attitudes towards opioids are complex. Culturally congruent strategies are needed to overcome culture-related barriers and improve quality of cancer pain care in this population.
Publisher: Elsevier BV
Date: 09-2019
Publisher: SAGE Publications
Date: 28-08-2020
Abstract: The majority of expected deaths in high income countries occur in hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete ex les of how these might be operationalised are scarce, and few studies conducted in the southern hemisphere. To seek the perspectives of Australian patients living with palliative care needs about their recent hospitalisation experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalised. An exploratory qualitative study using semi-structured interviews. Participants were recruited through five hospitals in New South Wales, Australia. Twenty-one participants took part. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including: Effective communication and shared decision making Expert care Adequate environment for care Family involvement in care provision Financial affairs Maintenance of sense of self/identity Minimising burden Respectful and compassionate care Trust and confidence in clinicians and Maintenance of patient safety. Two additional domains were noted to be important: Nutritional needs and Access to medical and nursing specialists. Taking a person-centred focus has provided a deeper understanding of how to strengthen inpatient palliative care practices. Future work is needed to translate the body of evidence on patient priorities into policy reforms and practice points.
Publisher: SAGE Publications
Date: 24-04-2023
DOI: 10.1177/02692163231169319
Abstract: The global need for focused improvements in palliative care within the acute hospital setting is well noted. A large volume of evidence exists detailing what hospitalised patients with palliative care needs and their families note as important for high quality care. Patient Reported Experience Measures (PREMs) are one mechanism that hospitals could use to inform improvement work. To date there has not been a review of PREMs available for hospitalised patients with palliative care needs and/or their family, nor how they align with noted priorities for high quality care. To identify and describe PREMs designed for hospitalised patients with palliative care needs and their families and their alignment with patient and family identified domains for high quality care. A systematic review. A systematic search of CINAHL, Medline and PsycInfo was conducted up to September 23, 2022 and supplemented by handsearching article reference lists and internet searches. PREMs written in English and designed for patients with palliative care needs in acute hospitals were eligible for inclusion. Included PREMs were described by: summarising key characteristics and mapping their items to domains noted to be important to hospitalised patients with palliative care needs and their families informed by outcomes from a published study completed in 2021. Evidence for psychometric properties were reviewed. Forty-four PREMs with 827 items were included. Items per PREM varied from 2 to 85 (median 25, IQR 13–42). Two-thirds ( n = 534, 65%) of the items were designed for families and a third ( n = 283, 34%) for hospitalised patients, and very few ( n = 10, 1%) for both. Sixty-six percent of items measured person-centred care, 30% expert care and 4% environmental aspects of care. Available PREMs address between 1 and 11 of the 14 domains of importance for quality palliative care. PREMs had a median of 38% (IQR 25.4–56.3) of items Grade 8 measured by the Flesch-Kincaid readability test, with Grade 8 or lower recommended to ensure health information is as accessible as possible across the population. Whilst 44 PREMs are available for hospitalised patients with palliative care needs or their families, a varied number of items are available for some domains of care provision that are important, compared to others. Few are suitable for people with lower levels of literacy or limited cognitive capacity due to illness.
Publisher: Springer Science and Business Media LLC
Date: 14-07-2023
DOI: 10.1007/S13187-023-02324-6
Abstract: Lung cancer patients have a high symptom burden that negatively affects their quality of life. Increasing patient self-efficacy to deal with treatment side effects can ameliorate their symptom burden. Education programs can help enhance patient self-efficacy by giving patients more control over their condition through increased disease literacy. This study aimed to evaluate the feasibility of microlearning for delivering lung cancer patients’ information on side effects of chemotherapy. Secondary objectives of the program are to understand the acceptability of microlearning for delivery this type of education to lung cancer patients and the potential impact of microlearning on patient self-efficacy, knowledge and confidence managing side effects of chemotherapy. A mixed-methods prepost test (or quasi-experimental) study design was used to better enable patients to identify and manage the side effects of their condition and chemotherapy. Participants were patients diagnosed with stage II to stage IV lung cancer, who had a life expectancy of greater than 3 months and were aged 18 years or older. Multiple validated scales were used to assess patient self-efficacy pre- and post-intervention. The online program was evaluated using quantitative data of completion rates extracted from the online platform. Semi-structured interviews were used to explore the impact of the online program on perceived self-efficacy and quality of life. Twenty-three participants agreed to participate in the study and five agreed to complete a semi-structured interview. Participants found the content comprehensive, relevant and engaging. The program improved perceived disease literacy and helped participants develop coping strategies to manage side effects. Participants also found the platform easy to use and navigate. Additional courses and features were requested. Patients with a diagnosis of cancer receive a large amount of information about the side effects of chemotherapy and how to manage them. This information is often provided soon after diagnosis or upon commencement of therapy, which can be overwhelming for some patients. Microlearning, a method of online learning that spaces distributing of content over several weeks, may be a useful tool for supporting delivering of health information to this group of patients.
Publisher: Elsevier BV
Date: 05-2015
DOI: 10.1016/J.JPAINSYMMAN.2014.09.010
Abstract: Mobility is linked to health status and quality of life. Life-Space Mobility Assessment (LSMA range 0-120) measures the spatial extent of people's excursion and physical support needs over the preceding month. The aim of this study was to generate normative population data for an LSMA-Composite (LSMA-C) score, irrespective of age or health service contact and explore the LSM of people with diabetes, current asthma, arthritis, and osteoporosis. LSMA questions were included in the 2011 South Australian Health Omnibus Survey, a multistage, systematic, and clustered s le of household face-to-face interviews. Sociodemographic and clinical variables were explored in relation to LSMA scores using descriptive, univariable, and multivariable analyses and receiver operator curves. For the 3032 respondents, the mean LSMA score was 98.3 (SD 20.3 median 100 interquartile range 34 [86-120] range 6-120). Five percent of respondents scored <60, 11% scored between ≥ 60 and 79, 27% scored between ≥ 80 and 99, and the remainder scored between 100 and 120. After 55 years of age, LSMA-C scores declined, more so in females. In multivariable analysis, declining scores were associated with being female, being older, living in rural areas, lower educational attainment, not working, lower household income, and higher numbers of chronic conditions (R(2) = 0.35, P < 0.001). The receiver operator curve demonstrated a highly specific but relatively insensitive measure. Having controlled for known confounders, the male/female difference cannot be easily explained. These data will help to contextualize studies in the future that use the LSMA-C score.
Publisher: Springer Science and Business Media LLC
Date: 18-04-2015
Publisher: Springer International Publishing
Date: 2019
Publisher: AME Publishing Company
Date: 07-2022
DOI: 10.21037/APM-22-9
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 09-2015
Publisher: BMJ
Date: 03-2014
Publisher: SAGE Publications
Date: 10-11-2021
DOI: 10.1177/17423953211054033
Abstract: To examine sociodemographic characteristics and caring experiences associated with being an older rather than younger carer of an adult with a chronic health condition. The population-based cross-sectional South Australian Health Omnibus survey was administered in 2016. Multiple logistic regression was used to identify sociodemographic characteristics and caring experiences associated with being an older (≥65 years) versus younger ( years) carer of one or more adult(s) with a chronic health condition. Of 988 survey respondents who self-identified as carers, 198(20%) were 65 years or over. Characteristics associated with being an older carer included having a partner, having poor physical health, being born outside Australia, have no formal qualification, living in a household of 1–2 people, have an annual household income ≤$60,000, and owning one's home. Carer experiences associated with older carer status included providing ≥40 h of care per week, perceived control over caring, and caring for someone with a neurological condition, whereas caring for someone with a mental illness, reporting poor mental health of their own, and providing personal care were inversely associated. Interventions directed at older carers should consider the increased likelihood that they may be investing large amounts of time in caring for someone with a neurological condition, and be culturally and linguistically erse.
Publisher: Wiley
Date: 26-05-2017
DOI: 10.1111/AJCO.12499
Abstract: To establish priorities for implementation research to reduce evidence-practice gaps in lung cancer care. A modified Nominal Group Technique was used to prioritize evidence-practice gaps in lung cancer care with oncology professionals at three clinical study sites: one rural and two metropolitan. A multimethods design was used to gather quantitative and qualitative data. Quantitative data were analyzed with descriptive statistics, while qualitative data were thematically analyzed. Forty-two health professionals participated, representing a multidisciplinary spread across the care trajectory. A standout priority was identified: reducing the time from first presentation of symptoms to diagnosis and referral for treatment (gap 1), as well as significant focus on a number of presented priorities, including: utilization of active treatments timely referral to palliative care services screening as a potential diagnostic tool and focusing on the care needs of our vulnerable population groups. We describe emerging themes from the qualitative analysis, including: patient help-seeking behavior, provider knowledge about lung cancer, service factors, patient and provider factors in not receiving treatment, the "flow on" effect of variations from optimal care, vulnerable populations of patients, psychosocial needs and early referral to palliative care services. This study is an ex le of a priority setting partnership between clinicians and health researchers. The priorities highlighted by this study guide future decision making for collaborative implementation of research in lung cancer care.
Publisher: Mary Ann Liebert Inc
Date: 10-2018
Abstract: Prescribing medications for nursing home residents with advanced dementia should focus on optimizing function and comfort, reducing unnecessary harms and aligning care goals with a palliative approach. The aim of the study was to estimate the proportion of Australian nursing home residents with advanced dementia receiving potentially inappropriate medications, and identify those most commonly prescribed and factors associated with their use. Data were collected through retrospective audit of medication charts. Two hundred eighteen nursing home residents with advanced dementia from 20 nursing homes participated in a cluster-randomized controlled trial of case conferencing (the IDEAL Study) from June 2013 to December 2014. Inappropriate drug use was defined as medications classified as "never appropriate" by the Palliative Excellence in Alzheimer Care Efforts (PEACE) program criteria. Generalized linear mixed models were used to identify variables predicting use of "never" appropriate medications. Over a quarter (n = 65, 30%) of residents received at least one medication classed as "never" appropriate, the most common being lipid-lowering agents (n = 38, 17.4%), antiplatelet agents (n = 18, 8.3%), and acetylcholinesterase inhibitors (n = 16, 7.3%). Residents who had been at the nursing home for ≤10 months (odds ratio [OR] 5.60, 95% confidence interval [CI] 1.74-18.06) and 11-21 months (OR 5.41, 95% CI 1.67-17.75) had significantly greater odds of receiving a never appropriate medication compared with residents who had been at the nursing home for >5 years. Use of potentially inappropriate medications in Australian nursing home residents with advanced dementia is common. A greater understanding of the rationale that underpins prescribing of medications is required.
Publisher: Elsevier BV
Date: 02-2017
Publisher: Mark Allen Group
Date: 02-10-2014
Publisher: AME Publishing Company
Date: 08-2020
Publisher: Informa UK Limited
Date: 03-07-2020
Publisher: Elsevier BV
Date: 03-2020
Publisher: Elsevier BV
Date: 08-2016
DOI: 10.1016/J.CTIM.2016.05.005
Abstract: To determine the prevalence and characteristics of users of prayer or spiritual healing among Australian women aged 31-36 years. This cross-sectional study was conducted as a part of the Australian Longitudinal Study on Women's Health (ALSWH). The s le used in the current sub-study were participants from the 'young' cohort (1973-78) (n=8180) aged between 31 and 36 years. Use of prayer or spiritual healing Prayer or spiritual healing was used on a regular basis by 20% of women aged between 31 and 36 years in 2009. Women who had symptoms of chronic illnesses (p=0.001), women who had never smoked (p=0.001) and women who used other forms of CAM (p<0.001) were significantly more likely to use prayer or spiritual healing. A significant proportion of women use prayer or spiritual healing on a regular basis. Further research is required to better understand their rationale for using prayer or spiritual healing and its perceived impact on health related outcomes and general well-being.
Publisher: Frontiers Media SA
Date: 12-02-2020
Publisher: SAGE Publications
Date: 2008
DOI: 10.1080/00048670802206320
Abstract: Objective: Parent–child interaction therapy (PCIT) is a short-term, evidence-based parent training intervention used widely in the treatment of behaviourally disordered preschool-aged children. Outcome studies have shown PCIT to be associated with lasting improvements in child and sibling behaviours and in the interactional styles, stress levels, confidence, and psychological functioning of parents. To date, however, all outcome studies have been conducted in university research clinic settings, and therefore understanding about the effectiveness of PCIT applied in a real-world setting has been limited. The present study evaluated the effectiveness of PCIT delivered to families in an Australian community-based early childhood clinic. Method: Participants included 43 families with children aged 19–52 months who were referred for treatment of disruptive child behaviours and who completed PCIT treatment at the Karitane Toddler Clinic, in Sydney, Australia. Parents provided pre- and post-treatment ratings of child behaviours, parental stress, parental psychopathology and parental attitudes to therapy. Results: At the end of the programme, clinically and statistically significant improvements were seen in child behaviours and parental well-being, and parents reported high levels of satisfaction with treatment. Conclusions: Implications for the implementation of PCIT programmes in community-based settings are discussed and areas of further research are identified.
Publisher: AME Publishing Company
Date: 12-2017
Abstract: Family meetings in palliative care can enhance communication with family members and identify unmet needs. However, the patient's voice may not be heard. This pre and post-test quality improvement project was conducted from 2013-2014 and investigated a patient-centered family meeting, which is a different approach to palliative care family meetings, to determine its feasibility and acceptability for patients, family and the palliative care team. Newly admitted patients to an Australian in-patient specialist palliative care unit were invited to ask anyone they wished to join them in a meeting with the palliative care team and to identify issues they wished to discuss. Consenting inpatients were interviewed shortly after admission participated in a family meeting and re-interviewed 2-3 days after the meeting. Family members provided feedback at the end of the meeting. A focus group was held with staff for feedback on this new approach for family meetings. Meetings were observed, documented and thematically analyzed. Thirty-one newly admitted patients were approached to participate in a family meeting. Eighty-four percent had family meetings and the majority (96%) was attended by the patient. Thematic analysis revealed 69% of patient-centered meetings raised end-of-life concerns and 54% were "family-focused". Patient-centered family meetings in palliative care were shown to be feasible and acceptable for staff, patients and family members. Many patients and families spontaneously shared end-of-life concerns. A patient-centered approach to family meetings that includes active patient involvement may provide additional and valued opportunities for patients and families to: express mutual concerns, deliver messages of comfort and appreciation, and prepare for death. Further investigation of this approach, including families' bereavement outcomes, is warranted.
Publisher: Wiley
Date: 02-01-2009
Publisher: SAGE Publications Ltd
Date: 2017
Publisher: Elsevier BV
Date: 04-2011
DOI: 10.1016/J.JPAINSYMMAN.2010.06.017
Abstract: Health and social services rely heavily on family and friends for caregiving at the end of life. This study sought to determine the prevalence and factors associated with an unwillingness to take on the caregiving role again by interviewing former caregivers of palliative care patients. The setting for this study was South Australia, with a population of 1.6 million people (7% of the Australian population) and used the South Australian Health Omnibus, an annual, face-to-face, cross-sectional, whole-of-population, multistage, systematic area s ling survey, which seeks a minimum of 3000 respondents each year statewide. One interview was conducted per household with the person over the age of 15 who most recently had a birthday. Using two years of data (n=8377 65.4% participation rate), comparisons between those who definitely would care again and those who would not was undertaken. One in 10 people across the community provided hands-on care for someone close to them dying an expected death in the five years before being interviewed. One in 13 (7.4%) former caregivers indicated that they would not provide such care again irrespective of time since the person's death and despite no reported differences identified in unmet needs between those who would and would not care again. A further one in six (16.5%) would only "probably care again." The regression model identified that increasing age lessens the willingness to care again (odds ratio [OR] 3.94 95% confidence interval [CI] 1.56, 9.95) and so does lower levels of education (OR 0.413 95% CI 0.18, 0.96) controlling for spousal relationship. These data suggest that assessment of willingness to care needs to be considered by clinical teams, especially in the elderly. Despite most active caregivers being willing to provide care again, a proportion would not.
Publisher: Mary Ann Liebert Inc
Date: 06-2018
Abstract: Opioid errors have the potential to cause significant patient harm. These high-risk medications are used in high volumes in palliative care services to manage pain and other symptoms. Palliative patients are at greater risk of harm from opioid errors, as they are generally older and taking numerous medications to manage multiple comorbidities. Understanding factors contributing to opioid errors in inpatient palliative care services is a largely underexplored, yet, essential aspect of patient safety. To explore and identify the characteristics and associated contributing factors of reported opioid errors in palliative care inpatient services using a multi-incident analysis framework. A multi-incident analysis of opioid errors reported over three years in two Australian specialist palliative care inpatient services. A total of 78 opioid errors were reported. The majority (76%) of these errors occurred during opioid administration, primarily due to omitted dose (34%) and wrong dose (17%) errors. Eighty-five percent of reported errors reached the patient resulting in opioid underdose for over half (59%) of these patients. Over one-third (37%) of errors caused patient harm, which required clinical intervention. Error contributing factors included the following: noncompliance with policy in idual factors such as distraction poor clinical communication systems and workload. This multi-incident analysis has provided initial insights into factors contributing to opioid errors in palliative care inpatient services. Further exploration is warranted to understand palliative care clinicians' perspectives of systems, in idual, and patient factors that influence safe opioid delivery processes.
Publisher: Elsevier BV
Date: 06-2017
Abstract: Low rates of driver licensing have been linked to increased risk of transport-related injury, and reduced access to health services, employment and educational opportunities in the Aboriginal population. This paper reports on how barriers to obtaining a driver licence are being addressed in four Aboriginal communities in New South Wales and South Australia. Qualitative data were collected over a four-month period in 2013. Interviews with Aboriginal and non-Aboriginal stakeholders (n=31) and 11 focus groups with Aboriginal participants (n=46) were analysed thematically using a framework approach. Factors facilitating licensing included: family support, professional lessons, alternative testing and programs that assist with literacy, fines management, financial assistance and access to a supervising driver. Stakeholders recommended raising awareness of existing services and funding community-based service provision to promote access to licensing. Facilitating licence participation requires systemic change and long-term investment to ensure interagency collaboration, service use and sustainability of relevant programs, including job search agencies. Implications for public health: The disadvantage faced by Aboriginal people in driver licensing is a fundamental barrier to participation and a social determinant of health. Understanding the factors that promote licensing is crucial to improving access for under-serviced populations recommendations provide pragmatic solutions to address licensing disadvantage.
Publisher: Springer Science and Business Media LLC
Date: 23-03-2021
DOI: 10.1186/S12913-021-06274-X
Abstract: Improving access to radiotherapy services in low and middle-income countries (LMICs) is challenging. Many LMICs’ radiotherapy initiatives fail because of multi-faceted barriers leading to significant wastage of scarce resources. Supporting LMICs to self-assess their readiness for establishing radiotherapy services will help to improve cancer outcomes by ensuring safe, effective and sustainable evidenced-based cancer care. The aim of the study was to develop practical guidance for LMICs on self-assessing their readiness to establish safe and sustainable radiotherapy services. The Access to Radiotherapy for Cancer treatment (ARC) Project was a pragmatic sequential mixed qualitative methods design underpinned by the World Health Organisation’s ‘Innovative Care for Chronic Conditions Framework’ and ‘Health System Building Blocks Framework for Action’ conceptual frameworks. This paper reports on the process of overall data integration and meta-inference from previously published components comprising a systematic review and two-part qualitative study (semi-structured interviews and a participant validation process). The meta-inferences enabled a series of radiotherapy readiness self-assessment requirements to be generated, formalised as a RE adiness SE lf- A ssessment (RESEA) Guide’ for use by LMICs. The meta-inferences identified a large number of factors that acted as facilitators and/or barriers, depending on the situation, which include: awareness and advocacy political leadership epidemiological data financial resources basic physical infrastructure radiation safety legislative and regulatory framework project management and radiotherapy workforce training and education. ‘Commitment’, ‘cooperation’, ‘capacity’ and ‘catalyst’ were identified as the key domains enabling development of radiotherapy services. Across these four domains, the RESEA Guide included 37 requirements and 120 readiness questions that LMICs need to consider and answer as part of establishing a new radiotherapy service. The RESEA Guide provides a new resource for LMICs to self-assess their capacity to establish safe and sustainable radiotherapy services. Future evaluation of the acceptability and feasibility of the RESEA Guide is needed to inform its validity. Further work, including field study, is needed to inform further refinements. Exploratory and confirmatory factor analyses are required to reduce the data set and test the fit of the four-factor structure (commitment, cooperation, capacity and catalyst) found in the current study.
Publisher: SAGE Publications
Date: 03-10-2014
Abstract: To determine whether burnout, role ambiguity, or conflict affects Australian hospice volunteers. Hospice volunteers (n = 120) were invited to participate in this pilot survey. Quantitative data were analyzed using descriptive statistics, while the free-text responses were analyzed using thematic content analysis. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Guidelines have been used to report this data. A total of 97 participants completed the survey. The majority were middle-aged women who had been palliative care volunteers for more than 7 years and volunteered 14 hours/week (median). Participants reported low levels of role ambiguity (x = 8.4, standard deviation [SD] ±3.0) and conflict (x = 9.8, SD ±3.4) and described enjoying their volunteering and having no symptoms of burnout (76%). Active hospice volunteers report low levels of role ambiguity, conflict, and burnout. Adopting a range of self-care strategies and working within a structured volunteer program appear to be important protective factors.
Publisher: SAGE Publications
Date: 03-08-2023
DOI: 10.1177/02692163231183994
Abstract: Forty-five percent of the world’s population lives in rural areas, yet their access to palliative care is quite limited. Identifying the care elements rural populations with palliative care needs require is critical to improving care outcomes. To identify the key care elements that optimise palliative care for people in rural communities. A systematic review of articles studying the impact of novel rural model of care interventions was undertaken in May 2022. This study is reported using the PRISMA Statement and was registered with Prospero (CRD42020154273). Three databases were searched, and the data analysed according to Popay’s narrative synthesis, and elements classified using the WHO Innovative Care for Chronic Conditions (ICCC) Framework. Of the 9508 identified papers, 15 met the inclusion criteria, reporting on 14 studies involving 1820 rural patients. Care received spanned 12/18 of the WHO ICCC Framework elements, with wide variability in how these elements were operationalised. The five elements that signal improved outcomes were: (1) Promote continuity and coordination (2) Prepared, informed and motivated health care teams (3) Prepared, informed and motivated patients and families (4) Organise and equip health care teams and (5) Promote consistent financing. A well-coordinated multidisciplinary team approach, led by clinicians with specialist palliative care expertise, integrated across local health care settings, using information systems and care planning, is critical to optimising rural palliative care patient outcomes. Rural patients and their families require timely input from specialist palliative care clinicians and information to address their needs. Prospero registration ID: CRD42020154273 www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=154273
Publisher: Elsevier BV
Date: 08-2007
Publisher: Elsevier BV
Date: 08-2021
Publisher: SAGE Publications
Date: 28-04-2015
Abstract: The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap. This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families. Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers. Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients. This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals.
Publisher: Elsevier BV
Date: 11-2015
DOI: 10.1016/J.ARCHGER.2015.06.021
Abstract: A major challenge facing our health care systems internationally is managing the needs of increasing numbers of older people in hospital with chronic and complex conditions. A multidisciplinary approach is considered central to tailoring and targeting approaches to gerontological care, although this is often not realised in reality. Comprehensive geriatric assessment (CGA) is seen as gold standard, though they are not readily available in many acute settings, compounded by the requirement for time, coordination of multidisciplinary specialties, and reimbursement issues. This systematic review aimed to identify multidisciplinary team interventions to optimise health outcomes for older people in acute care settings. Systematic review of randomised controlled trials reporting acute care multidisciplinary team based interventions, to improve care outcomes for hospitalised older people. Electronic databases (MEDLINE, CINAHL (EBSCO), Cochrane and PsycINFO) were searched from 1 January 2000 to 1 July 2014 in the English language. Data was extracted by two reviewers and checked by a third reviewer to resolve any conflicts. Seven articles reporting RCTs met the systematic review inclusion criteria. The heterogeneity of study populations, multidisciplinary team interventions and outcome measures necessitated the use of narrative analysis. Three common elements of these studies included: (i) tailored treatment by clinicians with geriatric expertise (ii) a focus on transitional care interventions that enhance discharge planning and (iii) communication an essential ingredient to improving care. The tailoring of treatment, underpinned with clear communication strategies can reduce emergency department re-admission rates, mortality and functional decline of older people. Refining health professionals roles and responsibilities within transition models is an essential component that can improve health outcomes for older people in acute care settings.
Publisher: BMJ
Date: 10-2015
Publisher: Elsevier BV
Date: 09-2022
Publisher: SAGE Publications
Date: 30-12-2022
DOI: 10.1177/02692163211068278
Abstract: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death and (ii) prison were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.
Publisher: Springer Science and Business Media LLC
Date: 22-09-2022
DOI: 10.1007/S00520-021-06569-Z
Abstract: A proportion of people with palliative care needs unknowingly have a genetic predisposition to their disease, placing relatives at increased risk. As end-of-life nears, the opportunity to address genetics for the benefit of their family narrows. Clinicians face numerous barriers addressing genetic issues, but there is limited evidence from the palliative care clinician perspective. Our aims are to (1) explore the views and experiences of palliative care clinicians in addressing genetics with patients and their families and (2) generate suggested strategies that support integration of genetics into palliative care. An interpretive descriptive qualitative study using semi-structured interviews with palliative care doctors and nurses (N = 14). Three themes were identified: (1) Harms and benefits of raising genetics: a delicate balancing act, (2) Navigating genetic responsibility within the scope of palliative care and (3) Overcoming practice barriers: a multipronged approach. Participants described balancing the benefits of addressing genetics in palliative care against potential harms. Responsibility to address genetic issues depends on perceptions of relevance and the scope of palliative care. Suggestions to overcome practice barriers included building genetic-palliative care relationships and multi-layered genetics education, developing clinical resources and increasing organisational support. Integrating aspects of genetics is feasible, but must be balanced against potential harms and benefits. Palliative care clinicians were uncertain about their responsibility to navigate these complex issues to address genetics. There are opportunities to overcome barriers and tailor support to ensure people nearing end-of-life have a chance to address genetic issues for the benefit of their families.
Publisher: BMJ
Date: 2019
DOI: 10.1136/BMJOPEN-2018-026177
Abstract: Delirium is a significant medical complication for hospitalised patients. Up to one-third of delirium episodes are preventable in older inpatients through non-pharmacological strategies that support essential human needs, such as physical and cognitive activity, sleep, hydration, vision and hearing. We hypothesised that a multicomponent intervention similarly may decrease delirium incidence, and/or its duration and severity, in inpatients with advanced cancer. Prior to a phase III trial, we aimed to determine if a multicomponent non-pharmacological delirium prevention intervention is feasible and acceptable for this specific inpatient group. The study is a phase II cluster randomised wait-listed controlled trial involving inpatients with advanced cancer at four Australian palliative care inpatient units. Intervention sites will introduce delirium screening, diagnostic assessment and a multicomponent delirium prevention intervention with six domains of care: preserving natural sleep maintaining optimal vision and hearing optimising hydration promoting communication, orientation and cognition optimising mobility and promoting family partnership. Interdisciplinary teams will tailor intervention delivery to each site and to patient need. Control sites will first introduce only delirium screening and diagnosis, later implementing the intervention, modified according to initial results. The primary outcome is adherence to the intervention during the first seven days of admission, measured for 40 consecutively admitted eligible patients. Secondary outcomes relate to fidelity and feasibility, acceptability and sustainability of the study intervention, processes and measures in this patient population, using quantitative and qualitative measures. Delirium incidence and severity will be measured to inform power calculations for a future phase III trial. Ethical approval was obtained for all four sites. Trial results, qualitative substudy findings and implementation of the intervention will be submitted for publication in peer-reviewed journals, and reported at conferences, to study sites and key peak bodies. ACTRN12617001070325 Pre-results.
Publisher: SAGE Publications
Date: 20-12-2014
Publisher: Elsevier BV
Date: 04-2022
DOI: 10.1016/J.JPAIN.2021.11.003
Abstract: The majority of in iduals with temporomandibular disorders (TMD) experience sleep disturbance, which can maintain and exacerbate chronic pain. However, the factors underlying the sleep-pain link have not been fully elucidated, especially beyond the laboratory. Sleep deprivation can induce threat interpretation bias, as well as impairment in positive affective functioning. Using both actigraphy and daily diaries, we examined whether morning pain expectancy and positive affect mediate the association between previous night's sleep disturbance and next-day overall pain severity. Total sleep time (TST) was selected as the primary measure of sleep. The s le included 144 women (mean age = 36 [SD = 11.1]) with TMD who displayed at least subclinical insomnia. Sleep was assessed for 14 days using actigraphy which was validated by concurrent sleep diaries. Daily diary assessments of pain-related experiences and affective states were conducted twice per day (ie, once upon participants' waking and the other prior to going to sleep) for the same 14-day period. Multilevel structural equation modeling revealed that both morning pain expectancy (95% CI: -.0004, -.00003) and positive affect (95% CI: -.0005, -.000001) mediated the association between previous night's TST and next-day's overall pain severity, such that shorter previous night TST was associated with higher next-morning pain expectancy and lower positive affect, which in turn were associated with a greater level of next-day's overall pain severity while controlling for morning pain severity. Reducing exaggerated daily pain expectancy and up-regulating positive affect may be important intervention targets for disengaging the sleep-pain link among in iduals with co-occurring TMD and sleep disturbance. Perspective: The daily link between previous night sleep duration and next day pain severity is mediated by morning pain expectancy and positive affect among women with temporomandibular disorder and sleep disturbance. Reducing pain expectancy and increasing positive affect may serve an important role in improving self-management of chronic pain.
Publisher: Springer Science and Business Media LLC
Date: 24-12-2019
DOI: 10.1007/S10741-019-09907-W
Abstract: To provide a conceptual rationale for targeted self-management strategies for breathlessness in chronic heart failure. Breathlessness is a defining symptom of chronic heart failure and is the primary cause for hospital readmissions and emergency room visits, resulting in extensive health care utilization. Chronic breathlessness, punctuated by acute physiological decompensation, is a sentinel symptom of the heart failure syndrome and often intensifies towards the end of life. Drawing upon evidence-based guidelines, physiological mechanisms and existing conceptual models for the management of breathlessness is proposed. Key elements of this model include adherence to evidence-based approaches (pharmacological and non-pharmacological management to optimize heart failure treatment), self-monitoring of symptoms, identification of modifiable factors (such as fluid overload), and targeted strategies for breathlessness including distraction and gas flow. Self-management is an essential component in heart failure management which could positively influences health outcomes and quality of life. Refining programs to focus on breathlessness may have the potential to reduce symptom burden and improve quality of life.
Publisher: Springer Science and Business Media LLC
Date: 29-06-2020
DOI: 10.1186/S12885-020-07079-7
Abstract: Little is known about the prevalence and incidence in low and middle-income countries (LMICs) of secondary lymphedema due to cancer. The purpose of the study is to estimate the prevalence and incidence in LMICs of secondary lymphedema related to cancer and/or its treatment(s) and identify risk factors. A systematic review and meta-analysis was conducted. Medline, EMBASE and CINAHL were searched in June 2019 for peer-reviewed articles that assessed prevalence and/or incidence of cancer-related lymphedema in LMICs. Risk of bias was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Prevalence Studies. Estimates of pooled prevalence and incidence estimates were calculated with 95% confidence intervals (CI), with sub-group analyses grouping studies according to: country of origin, study design, risk of bias, setting, treatment, and lymphedema site and measurement. Heterogeneity was measured using X 2 and I 2 , with interpretation guided by the Cochrane Handbook for Systematic Reviews. Of 8766 articles, 36 were included. Most reported on arm lymphedema secondary to breast cancer treatment ( n = 31), with the remainder reporting on leg lymphedema following gynecological cancer treatment ( n = 5). Arm lymphedema was mostly measured by arm circumference ( n = 16/31 studies), and leg lymphedema through self-report ( n = 3/5 studies). Eight studies used more than one lymphedema measurement. Only two studies that measured prevalence of leg lymphedema could be included in a meta-analysis (pooled prevalence =10.0, 95% CI 7.0–13.0, I 2 = 0%). The pooled prevalence of arm lymphedema was 27%, with considerable heterogeneity (95% CI 20.0–34.0, I 2 = 94.69%, n = 13 studies). The pooled incidence for arm lymphedema was 21%, also with considerable heterogeneity (95% CI 15.0–26.0, I 2 = 95.29%, n = 11 studies). There was evidence that higher body mass index ( 25) was associated with increased risk of arm lymphedema (OR: 1.98, 95% CI 1.45–2.70, I 2 = 84.0%, P 0.0001, n = 4 studies). Better understanding the factors that contribute to variability in cancer-related arm lymphedema in LMICs is an important first step to developing targeted interventions to improve quality of life. Standardising measurement of lymphedema globally and better reporting would enable comparison within the context of information about cancer treatments and lymphedema care.
Publisher: Cambridge University Press (CUP)
Date: 17-01-2018
DOI: 10.1017/S1478951517001171
Abstract: More than half of all cancer patients experience unrelieved pain. Culture can significantly affect patients’ cancer pain-related beliefs and behaviors. Little is known about cultural impact on Chinese cancer patients’ pain management. The objective of this review was to describe pain management experiences of cancer patients from Chinese backgrounds and to identify barriers affecting their pain management. A systematic review was conducted adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies were included if they reported pain management experiences of adult cancer patients from Chinese backgrounds. Five databases were searched for peer-reviewed articles published in English or Chinese journals between1990 and 2015. The quality of included studies was assessed using Joanna Briggs Institution's appraisal tools. Of 3,904 identified records, 23 articles met criteria and provided primary data from 6,110 patients. Suboptimal analgesic use, delays in receiving treatment, reluctance to report pain, and/or poor adherence to prescribed analgesics contributed to the patients’ inadequate pain control. Patient-related barriers included fatalism, desire to be good, low pain control belief, pain endurance beliefs, and negative effect beliefs. Patients and family shared barriers about fear of addiction and concerns on analgesic side effects and disease progression. Health professional–related barriers were poor communication, ineffective management of pain, and analgesic side effects. Healthcare system–related barriers included limited access to analgesics and/or after hour pain services and lack of health insurance. Chinese cancer patients’ misconceptions regarding pain and analgesics may present as the main barriers to optimal pain relief. Findings of this review may inform health interventions to improve cancer pain management outcomes for patients from Chinese backgrounds. Future studies on patients’ nonpharmacology intervention-related experiences are required to inform multidisciplinary and biopsychosocial approaches for culturally appropriate pain management.
Publisher: Elsevier BV
Date: 04-2019
DOI: 10.1016/J.PMN.2018.05.004
Abstract: Pain in people with cancer is common but often under-recognized and under-treated. Guidelines can improve the quality of pain care, but need targeted strategies to support implementation. To test the feasibility of two service-level strategies for supporting guideline implementation: a screening system and medical record audit. Multimethods. One oncology outpatient service, and one palliative care outpatient and inpatient service. Patients with advanced cancer. Patients were screened in the waiting room with a modified version of the Edmonton Symptom Assessment System-revised either electronically or in paper-based format. Feasibility indicated the percentage of patients successfully screened from the total number attending the services. An audit assessed adherence to key indicators of pain assessment and management. Feasibility thresholds were set at 75% incidence for screening and a median of 30 minutes per patient for audit. Of 452 patient visits, 95% (n = 429) were successfully screened, 34% (n = 155) electronically and 61% (n = 274) paper-based. Electronic pain screening was technically challenging and time-intensive for nurses. Thirty-one patients consented to have their records audited. The median audit time was 37.5 minutes (range 10-120 minutes). Variability arose from the number and type of record (outpatient or inpatient). Adherence to indicators varied from 63% (pain assessment at first presentation) to 94% (regular pain assessment and medication prescribed at regular intervals). This study confirmed the need to implement evidence-based guidelines for cancer pain and generated useful insights into the feasibility of pain screening and audit.
Publisher: Oxford University Press (OUP)
Date: 09-10-2020
Abstract: Co-morbid depression and anxiety symptoms are frequently under-recognised and under-treated in heart disease and this negatively impacts self-management. The purpose of this study was to determine the prevalence, correlates and predictors of depression and anxiety in cardiac rehabilitation programmes, the impact of cardiac rehabilitation on moderate depression, anxiety and stress symptoms, and the relationship between moderate depression, anxiety and stress symptoms and cardiac rehabilitation adherence. This was a retrospective cohort study of 5908 patients entering cardiac rehabilitation programmes from 2006–2017, across two Sydney metropolitan teaching hospitals. Variables included demographics, diagnoses, cardiovascular risk factors, medication use, participation rates, health status (Medical Outcomes Study Short Form-36) and psychological health (Depression Anxiety Stress Scales) subscale scores. Moderate depression, anxiety or stress symptoms were prevalent in 18%, 28% and 13% of adults entering cardiac rehabilitation programmes, respectively. Adults with moderate depression (24% vs 13%), anxiety (32% vs 23%) or stress (18% vs 10%) symptoms were significantly less likely to adhere to cardiac rehabilitation compared with those with normal-mild symptoms ( p 0.001). Anxiety (odds ratio 4.395, 95% confidence interval 3.363–5.744, p 0.001) and stress (odds ratio 4.527, 95% confidence interval 3.315–6.181, p 0.001) were the strongest predictors of depression. Depression (odds ratio 3.167, 95% confidence interval 2.411–4.161) and stress (odds ratio 5.577, 95% confidence interval 4.006–7.765, p 0.001) increased the risk of anxiety on entry by more than three times, above socio-demographic factors, cardiovascular risk factors, diagnoses and quality of life. Monitoring depression and anxiety symptoms on entry and during cardiac rehabilitation can assist to improve adherence and may identify the need for additional psychological health support. Exploring the relevance and use of adjunct psychological support strategies within cardiac rehabilitation programmes is warranted.
Publisher: Elsevier BV
Date: 10-2017
DOI: 10.1016/J.IJNURSTU.2017.07.007
Abstract: Delirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess. To report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units. The Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion. There was a moderate to high rate of delirium occurrence in palliative care unit populations and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units. Improving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting.
Publisher: Elsevier BV
Date: 10-2018
DOI: 10.1016/J.LUNGCAN.2018.07.032
Abstract: Multidisciplinary team (MDT) presentation in lung cancer has the potential to improve longterm outcomes, although this varies between studies. This study aims to evaluate outcomes including survival, according to MDT presentation and to explore the utility of data obtained from local clinical sources. Prospective cases of lung cancer recorded in our institution's cancer registry were analyzed according to MDT presentation for patient and tumour characteristics, adjusted survival and referral to palliative care. 1197 cases were included, 295 (24.6%) with MDT presentation and 902 (75.4%) without. 60% of patients were male with median (IQR) age at diagnosis of 70 years (62-78). Histopathology distribution (non-small cell lung cancer and small-cell lung cancer) was similar between the two groups. Compared with the non-MDT group, the MDT group had (1) ECOG score recorded more often (71.9% vs. 47.6%), (2) higher proportion of ECOG 0 cases (31.2% vs. 11.9%) and ECOG 1 cases (28.8% vs. 20.3%), (3) higher proportion of early stage disease (stage I - 23.1% vs. 9.7% stage II - 10.2% vs. 4.8%, stage IIIA - 14.6% vs 6.3%) and (4) lower proportion of metastatic disease (stage IV - 39.3% vs. 56.1%). Referral to palliative care was incompletely recorded in both groups (MDT: n = 116/295, 39.3% non-MDT: n = 430, 47.7%) but did not differ significantly for stage IV cases. Survival analyzed by stage was greater in the MDT group at 1, 2 and 5 years for all stages except stage IIIB at 1 year post-diagnosis. Adjusted survival analysis for the entire cohort showed improved survival at 5 years for the MDT group (HR 0.7 (0.58-0.85), p < 0.001). MDT presentation is associated with improved adjusted survival for lung cancer in this single institutional cohort in an analysis of local clinical cancer registry data.
Publisher: Springer International Publishing
Date: 2018
Publisher: AME Publishing Company
Date: 03-2021
DOI: 10.21037/APM-20-1760
Publisher: S. Karger AG
Date: 2020
DOI: 10.1159/000507400
Abstract: b i Introduction: /i /b Many clinical trials fail because of placebo responses. Prior therapeutic experiences and patients’ expectations may affect the capacity to respond to placebos in chronic disorders. b i Objective: /i /b The scope of this study in 763 chronic orofacial pain and healthy study participants was to compare the magnitude and prevalence of placebo effects and determine the putative role of prior therapeutic experiences vs. expectations. b i Methods: /i /b We tested placebo propensity in a laboratory setting by using 2 distinct levels of in idually tailored painful stimulations (high pain and low pain) to reinforce expectations and provide a hypoalgesic experience (conditioning phase). Afterwards, both levels of pain were surreptitiously set at a moderate pain level to test for placebo effects (testing phase). Pain and expectation ratings were assessed as primary outcomes using visual analog scales. b i Results: /i /b In both chronic pain and healthy participants, placebo effects were similar in magnitude, with the larger prevalence of responders in the healthy participants. Although chronic pain participants reported higher pain relief expectations, expectations did not account for the occurrence of placebo effects. Rather, prior experience via conditioning strength mediated placebo effects in both pain and healthy participants. b i Conclusions: /i /b These findings indicate that participants with chronic pain conditions display robust placebo effects that are not mediated by expectations but are instead directly linked to prior therapeutic experiences. This confirms the importance of assessing the therapeutic history while raising questions about the utility of expectation ratings. Future research is needed to enhance prediction of responses to placebos, which will ultimately improve clinical trial designs.
Publisher: Springer Science and Business Media LLC
Date: 09-04-2022
DOI: 10.1007/S11060-022-03991-Z
Abstract: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers identify service gaps and inform changes needed to implement guidelines and Optimal Care Pathways. This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse physiotherapist neuropsychologist or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93–100%) and mental health professionals (60–85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways.
Publisher: Mark Allen Group
Date: 02-01-2016
DOI: 10.12968/IJPN.2016.22.1.13
Abstract: Internationally, delirium prevalence in palliative care is reported to range between 26–88%, yet little is known about the occurrence of delirium in Australian palliative care inpatient populations. To: 1) ascertain 24-hour delirium point-prevalence in an Australian palliative care inpatient population 2) test the feasibility and acceptability of the delirium measurement methodology. This was a prospective cross-sectional study. Delirium was measured in patients of two palliative care units using the Nursing Delirium Screening Scale, Memorial Delirium Assessment Scale and DSM-5 diagnostic criteria. Descriptive statistics were used to report patient demographics, palliative care phase, function, delirium measure completion, and proportion of patients with a positive screen and diagnosis. Patients (n=47) had a mean age of 74 years (SD+10) and mostly malignant diagnoses (96%). All patients were screened for delirium, but few were capable of completing the Memorial Delirium Assessment Scale (n=2). One-third of patients (34%) screened positive for delirium and 19% were diagnosed as delirious according to the DSM-5. The Nursing Delirium Screening Scale and physician application of DSM-5 proved feasible and acceptable, while the Memorial Delirium Assessment Scale did not. Patients' advanced age and proportions screening positive for delirium and diagnosed as delirious attest to the need to rapidly recognise, assess and respond to patients experiencing this distressing disorder while being cared for in palliative care inpatient settings.
Publisher: Wiley
Date: 11-04-2018
DOI: 10.1111/RESP.13307
Abstract: While multidisciplinary team (MDT) care in lung cancer is widely practiced, there are few guidelines for MDT on best data collection strategies. MDT meetings need ready access to information for the provision of optimal treatment recommendations (the primary purpose of the meeting), audit of team performance and benchmarking. This study aimed to develop a practical data set designed for these goals through a recognized consensus process with health professionals who participate in formal MDT settings. A modified Delphi process with three iterations (two surveys and one consensus conference) was carried out involving over 100 Australian lung cancer MDT health professionals. In total, 122 lung cancer MDT health professionals responded to the Round 1 survey from over 350 invitees. Of the 122, 98 were available for invitation to Round 2. Of 98, 52 (53%) invitees responded to the Round 2 survey. After two rounds, 51 data elements across 8 domains (patient demographics, risk factors, biopsy data, staging, timeliness, treatment, follow-up and patient selection) achieved consensus, defined as 80% agreement. For Round 3, 33 MDT lead clinicians were invited to participate in a consensus conference. Of 33, 14 (42%) invitees distilled the 47 data elements into 23 elements across 8 domains to address the study objectives. A practical data set for lung cancer MDT to use for optimal treatment recommendations and to evaluate team performance was developed through recognized consensus methodology. Access to streamlined, relevant and feasible data collection strategies may improve MDT decision-making, audit of team performance and facilitate benchmarking.
Publisher: SAGE Publications
Date: 06-06-2021
DOI: 10.1177/02692163211022183
Abstract: Recent studies cast doubt on the net effect of antipsychotics for delirium. To investigate the influence of these studies and other factors on clinicians’ delirium treatment practice and practice change in palliative care and other specialties using the Theoretical Domains Framework. Australia-wide online survey of relevant clinicians. Registered nurses (72%), doctors (16%), nurse practitioners (6%) and pharmacists (5%) who cared for patients with delirium in erse settings, recruited through health professionals’ organisations. Most of the s le ( n = 475): worked in geriatrics/aged (31%) or palliative care (30%) in hospitals (64%) and saw a new patient with delirium at least weekly (61%). More (59%) reported delirium practice change since 2016, mostly by increased non-pharmacological interventions (53%). Fifty-five percent reported current antipsychotic use for delirium, primarily for patient distress (79%) and unsafe behaviour (67%). Common Theoretical Domains Framework categories of influences on respondents’ delirium practice were: emotion (54%) knowledge (53%) and physical (43%) and social (21%) opportunities. Palliative care respondents more often reported: awareness of any named key study of antipsychotics for delirium (73% vs 39%, p 0.001) changed delirium treatment (73% vs 53%, p = 0.017) decreased pharmacological interventions (60% vs 15%, p 0.001) off-label medication use (86% vs 51%, p 0.001: antipsychotics 79% vs 44%, p 0.001 benzodiazepines 61% vs 26%, p 0.001) and emotion as an influence (82% vs 39%, p 0.001). Clinicians’ use of antipsychotic during delirium remains common and is primarily motivated by distress and safety concerns for the patient and others nearby. Supporting clinicians to achieve evidence-based delirium practice requires further work.
Publisher: Elsevier BV
Date: 04-2010
Publisher: Elsevier BV
Date: 07-2020
Publisher: Informa UK Limited
Date: 29-09-2019
Publisher: MDPI AG
Date: 03-02-2019
DOI: 10.3390/MIN9020091
Abstract: In this study, the oxygen isotope (δ18O) composition of pink to red gem-quality rubies from Paranesti, Greece was investigated using in-situ secondary ionization mass spectrometry (SIMS) and laser-fluorination techniques. Paranesti rubies have a narrow range of δ18O values between ~0 and +1‰ and represent one of only a few cases worldwide where δ18O signatures can be used to distinguish them from other localities. SIMS analyses from this study and previous work by the authors suggests that the rubies formed under metamorphic/metasomatic conditions involving deeply penetrating meteoric waters along major crustal structures associated with the Nestos Shear Zone. SIMS analyses also revealed slight variations in δ18O composition for two outcrops located just ~500 m apart: PAR-1 with a mean value of 1.0‰ ± 0.42‰ and PAR-5 with a mean value of 0.14‰ ± 0.24‰. This work adds to the growing use of in-situ methods to determine the origin of gem-quality corundum and re-confirms its usefulness in geographic “fingerprinting”.
Publisher: Wiley
Date: 13-10-2014
DOI: 10.1111/JOCN.12680
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 12-2017
Publisher: SAGE Publications
Date: 28-07-2020
Abstract: Chronic obstructive pulmonary disease and lung cancer are both life-limiting diseases that confer burden in the form of symptoms and affect functioning and quality of life. Comparing burden between these diseases is of interest to determine whether people with chronic obstructive pulmonary disease require improved access to Specialist Palliative Care. Access should be based on needs rather than diagnosis or prognosis but is limited for people with chronic obstructive pulmonary disease compared to lung cancer. The aim of this study was to synthesise research comparing burden from chronic obstructive pulmonary disease and lung cancer to estimate relative need for Specialist Palliative Care. A systematic review was conducted of observational quantitative studies published in English peer-reviewed journals comparing burden from chronic obstructive pulmonary disease and lung cancer (PROSPERO CRD42018108819). No limits were placed on disease stage. Meta-analyses were performed where studies used the same measure otherwise, synthesis used a narrative approach. Risk of bias was assessed using the Agency for Healthcare Research and Quality tool. Electronic databases were searched in September 2019. Of 790 articles returned, 13 were included, reporting 11 studies. Risk of bias was generally moderate. Except for pain, burden tended to be at least as substantial from chronic obstructive pulmonary disease as from lung cancer, with breathlessness and impacts on functioning being significantly worse. Longitudinal studies suggest that people with chronic obstructive pulmonary disease live with burden for longer. Efforts should be made to ensure that access to Specialist Palliative Care is commensurate with chronic obstructive pulmonary disease’s substantial and long-lasting burden. Future research should clarify whether managing burden in chronic obstructive pulmonary disease and lung cancer requires different approaches.
Publisher: Elsevier BV
Date: 08-2022
DOI: 10.1016/J.IJROBP.2022.04.030
Abstract: The management of older adults with cancer is rapidly becoming a significant challenge in radiation oncology (RO) practice. The education of future radiation oncologists in geriatric oncology is fundamental to ensuring that older adults receive high-quality care. Currently RO trainees receive little training and education in geriatric oncology. The objective of this study was to define core geriatric RO curriculum learning outcomes relevant to RO trainees worldwide. A 2-stage modified Delphi consensus was conducted. Stage 1 involved the formation of an expert reference panel (ERP) of multiprofessional experts in geriatric oncology and/or RO and the compilation of a potential geriatric RO learning outcomes set. Stage 2 involved 3 iterative rounds: round 1 and round 2 (both online surveys), and an intervening ERP round. These aimed at identifying and refining ideal geriatric RO learning outcomes. Invited participants for round 1 and 2 included oncology health care professionals with expertise across RO, geriatric oncology, and/or education and consumers. Predefined Delphi consensus definitions were applied to the results of rounds 1 and 2. An ERP of 11 experts in geriatric oncology and/or RO was formed. Seventy potential knowledge- and skill-based learning outcomes were identified. In round 1, 103 of 179 invited eligible Delphi participants completed the survey (58% response rate). The ERP round was conducted, resulting in the exclusion of 28 learning outcomes. In round 2, 54 of 103 completed the survey (52% response rate). This identified a final total of 33 geriatric RO learning outcomes. The geriatric RO learning outcomes described in this study form an international consensus that can inform RO training bodies worldwide. This represents the first fundamental step in developing a global educational framework aimed at improving RO trainee knowledge and skills in geriatric oncology.
Publisher: Mark Allen Group
Date: 02-10-2016
Publisher: AME Publishing Company
Date: 08-2020
Publisher: Mark Allen Group
Date: 02-10-2016
Publisher: Mark Allen Group
Date: 02-06-2017
DOI: 10.12968/IJPN.2017.23.6.298
Abstract: Depression is an important condition to consider if we are to optimise the care outcomes for patients with palliative care needs. Depression has a high incidence in palliative patients, with up to 15% diagnosed with major depression and 37% expressing some form of depressive symptoms ( O'Connor et al, 2010 ). The challenge is to ensure that palliative care patients with depression are identified in a timely manner and that their depression is effectively managed. To examine how Australian specialist inpatient palliative care nurses perceive, assess and respond to depression in a patient case study. This descriptive pilot study is a replication of a United States study by Little et al (2005) , exploring contemporary Australian specialist palliative care nurses' screening, assessment and management of depression in people with a progressive life-limiting illness. A survey titled ‘Specialist palliative care nurses managing patients with complex care needs’ questioned the nursing assessment, knowledge and clinical care priorities related to a case vignette of a patient demonstrating signs of depression. A total of 33 nurses completed this survey. Less than half (39.4%) of the participants identified depression as a major issue arising from the case vignette. Depression screening tools were not widely known. Functionality assessments measuring activities of daily living were the most recognised and widely used tools by participants. This small s le pilot study demonstrated that specialist palliative care nurses are still not confident in their screening and responding to a patient with depression. The available evidenced based depression screening tools were unfamiliar to these nurses and not widely used which can result in depression remaining undetected and undermanaged. The connections between physical health and mental health need stronger recognition and response within nursing care of palliative patients.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 03-2023
Publisher: Wiley
Date: 23-11-2010
DOI: 10.1002/JQS.1429
Publisher: Informa UK Limited
Date: 11-07-2023
Publisher: Wiley
Date: 12-11-2019
DOI: 10.1111/AJCO.13278
Abstract: Multidisciplinary team (MDT) meetings can facilitate optimal lung cancer care, yet details of structured data collection and feedback remain sparse. This study aimed to investigate data collection and the impact of feedback to lung cancer MDTs. A mixed-methods study using pre and post-test surveys, semistructured interviews, and observation to evaluate data collection and response to modeled data feedback in three Australian lung cancer MDTs at different locations and development stage (site A: outer metropolitan, established site B, outer metropolitan, new and site C, inner metropolitan, established). MDT attendees (range 13-25) discussed 5-8 cases per meeting. All sites collected data prospectively (80% prepopulated) into local oncology medical information systems. The pretest survey had 17 respondents in total (88% clinicians). At sites A and C, 100% of respondents noted regular data audits, occasional at site B. Regular audit data included number of cases, stage, final diagnosis, and time to diagnosis and treatment. The post-test survey had 25 respondents in total, all clinicians. The majority (88-96%) of respondents found modeled data easy to interpret, relevant to clinical practice and the MDT, and welcomed future regular data presentations (as rated on a 5-point Likert scale mean weighted average 4.5 where > 4 demonstrates agreement). Semistructured interviews identified five major themes for MDTs: current practice, attitudes, enablers, barriers, and benefits for the MDT. MDT teams exhibited positive responses to modeled data feedback. Key characteristics of MDT data were identified and may assist with future team research and development.
Publisher: Elsevier BV
Date: 2017
Publisher: British Medical Journal Publishing Group
Date: 10-2019
Publisher: MDPI AG
Date: 19-10-2019
DOI: 10.3390/SU11205812
Abstract: Increasing the share of renewable energy in the energy mix is of crucial importance for climate change mitigation. However, as renewable energy development often changes the visual appearance of landscapes and might affect other industries relying on them, such as nature-based tourism, it therefore requires careful planning. This is especially true in Iceland, a country rich in renewable energy resources and a popular nature-based tourism destination. The present study investigated the potential impacts on tourism of the proposed Hverfisfljót hydropower plant by identifying the main attractions of the area as well as by analyzing visitors’ perceptions, preferences and attitudes, and the place meanings they assign to the landscape of the area. The data for the study were collected using onsite questionnaire surveys, interviews with visitors to the area, open-ended diaries, and participant observation. The results reveal that the area of the proposed power plant is perceived as wilderness by its visitors, who seek environmental settings related to the components of a wilderness experience. Visitors were highly satisfied with the present settings and preferred to protect the area from development to ensure the provision of currently available recreational opportunities. The results further show that the proposed Hverfisfljót hydropower plant would reduce the attractiveness of the area to its visitors, degrade their wilderness experience, and therefore strongly reduce their interest in visiting the area. Moreover, the participants perceived the already developed lowlands of the country as more suitable for renewable energy development than the undeveloped highland areas, which is in line with the principles of smart practices for renewable energy development.
Publisher: Informa UK Limited
Date: 12-2014
Publisher: SAGE Publications
Date: 31-03-2014
Abstract: Pain is a complex multidimensional phenomenon moderated by consumer, provider and health system factors. Effective pain management cuts across professional boundaries, with failure to screen and assess contributing to the burden of unrelieved pain. To test the impact of an online pain assessment learning module on specialist palliative care nurses’ pain assessment competencies, and to determine whether this education impacted positively on palliative care patients’ reported pain ratings. A quasi-experimental pain assessment education pilot study utilising ‘Qstream © ’, an online methodology to deliver 11 case-based pain assessment learning scenarios, developed by an interdisciplinary expert panel and delivered to participants’ work emails over a 28-day period in mid-2012. The ‘Self-Perceived Pain Assessment Competencies’ survey and chart audit data, including patient-reported pain intensity ratings, were collected pre-intervention (T1) and post-intervention (T2) and analysed using inferential statistics to determine key outcomes. Nurses working at two Australian inpatient specialist palliative care services in 2012. The results reported conform to the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Guidelines. Participants who completed the education intervention ( n = 34) increased their pain assessment knowledge, assessment tool knowledge and confidence to undertake a pain assessment ( p 0.001). Participants were more likely to document pain intensity scores in patients’ medical records than non-participants (95% confidence interval = 7.3%–22.7%, p = 0.021). There was also a significant reduction in the mean patient-reported pain ratings between the admission and audit date at post-test of 1.5 (95% confidence interval = 0.7–2.3) units in pain score. This pilot confers confidence of the education interventions capacity to improve specialist palliative care nurses’ pain assessment practices and to reduce patient-rated pain intensity scores.
Publisher: Mark Allen Group
Date: 02-08-2021
Publisher: Mary Ann Liebert Inc
Date: 11-2016
Abstract: Delirium has a high mortality rate. Understanding predictors of prognosis in patients with delirium will aid treatment decisions and communication. This study aimed to explore variables associated with death during an established episode of delirium in palliative care when haloperidol treatment had been commenced. A consecutive cohort of palliative care patients, from 14 centers across four countries, is reported. The outcome of interest was death within 14 days from commencement of haloperidol treatment for delirium. Clinicodemographic variables explored were delirium severity, age, gender, primary life limiting illness, body mass index (BMI), total daily haloperidol dose at baseline (mg), functional status, and comorbidities. One hundred and sixteen palliative care patients where vital status was known were included in the analysis 45% (n = 52) died within 10 days, and 56% (n = 65) died within 14 days. In multivariate analyses no clinical or demographic variables predicted death, apart from lower BMI in noncancer patients. This study has shown a very high mortality rate within two weeks of commencing haloperidol for delirium in palliative care, with no clear clinical predictors for those with a higher chance of dying. Having a higher BMI offered some benefit in survival, but only in noncancer patients. When delirium occurs in advanced illness, discussion should be initiated about the gravity of the clinical situation.
Publisher: Springer Science and Business Media LLC
Date: 16-07-2018
Publisher: Springer Science and Business Media LLC
Date: 21-07-2009
DOI: 10.1007/S00737-009-0091-4
Abstract: Emerging evidence suggests that many women in the postnatal period experience clinically significant levels of anxiety but do not meet full diagnostic criteria for an existing anxiety disorder. In this study, 167 women with infants aged 2 weeks to 12 months were interviewed for current and lifetime history of depression and anxiety disorders using the SCID-I and completed a range of self-report measures measuring psychological risk factors and current depressive and anxiety symptomatology. Qualitative comments provided by women diagnosed with ADNOS (maternally focused worry) were analyzed and themes identified, and independent t-tests and chi-square tests were conducted to compare differences between these women and women with GAD. Results showed (1) there to be almost as many women who met criteria for ADNOS (maternally focused worry) as met criteria for GAD, and (2) that women with maternally focused worry were indistinguishable from women with GAD in terms of anxiety and depressive symptom severity, functional impairment and a range of risk factors. These results highlight the status of maternally focused worry as an under-recognized phenomenon and one in need of further clinical and research attention.
Publisher: BMJ
Date: 08-05-2019
DOI: 10.1136/BMJSPCARE-2018-001749
Abstract: To examine whether use of a hand-held fan (‘fan’) improves breathlessness and increases physical activity. A secondary exploratory analysis using pooled data from the fan arms of two feasibility randomised controlled trials in people with chronic breathlessness: (1) fan and activity advice vs activity advice, (2) activity advice alone or with the addition or the ‘calming hand’, or the fan, or both. Descriptive statistics and regression analysis to explore patient characteristics associated with benefit (eg age, sex, diagnosis, general self-efficacy). Forty-one participants were allocated the fan (73 years (IQR 65–76, range 46–88), 59% male, 20 (49%) chronic obstructive pulmonary disease (COPD), three (7%) heart failure, three (7%) cancer). Thirty-five (85%) reported that the fan helped breathing, and 22 (54%) reported increased physical activity. Breathlessness benefit was more likely in older people, those with COPD and those with a carer. However, due to the small s le size none of these findings were statistically significant. Those with COPD were more likely to use the fan than people with other diagnoses (OR 5.94 (95% CI 0.63 to 56.21, p=0.120)). These exploratory data support that the fan helps chronic breathlessness in most people and adds new data to indicate that the fan is perceived to increase people’s physical activity. There is also a signal of possible particular benefits in people with COPD which is worthy of further study.
Publisher: Springer International Publishing
Date: 2018
Publisher: Informa UK Limited
Date: 05-12-2014
Publisher: BMJ
Date: 06-2015
Publisher: Springer Science and Business Media LLC
Date: 20-02-2018
Publisher: Mark Allen Group
Date: 02-02-2015
Publisher: Informa UK Limited
Date: 10-09-2020
Publisher: Mary Ann Liebert Inc
Date: 11-2013
Publisher: Elsevier BV
Date: 11-2014
DOI: 10.1016/J.JPAINSYMMAN.2014.01.008
Abstract: Delirium is underrecognized by nurses, including those working in palliative care settings where the syndrome occurs frequently. Identifying contextual factors that support and/or hinder palliative care nurses' delirium recognition and assessment capabilities is crucial, to inform development of clinical practice and systems aimed at improving patients' delirium outcomes. The aim of the study was to identify nurses' perceptions of the barriers and enablers to recognizing and assessing delirium symptoms in palliative care inpatient settings. A series of semistructured interviews, guided by critical incident technique, were conducted with nurses working in Australian palliative care inpatient settings. A hypoactive delirium vignette prompted participants' recall of delirium and identification of the perceived factors (barriers and enablers) that impacted on their delirium recognition and assessment capabilities. Thematic content analysis was used to analyze the qualitative data. Thirty participants from nine palliative care services provided insights into the barriers and enablers of delirium recognition and assessment in the inpatient setting that were categorized as patient and family, health professional, and system level factors. Analysis revealed five themes, each reflecting both identified barriers and current and/or potential enablers: 1) value in listening to patients and engaging families, 2) assessment is integrated with care delivery, 3) respecting and integrating nurses' observations, 4) addressing nurses' delirium knowledge needs, and 5) integrating delirium recognition and assessment processes. Supporting the development of palliative care nursing delirium recognition and assessment practice requires attending to a range of barriers and enablers at the patient and family, health professional, and system levels.
Publisher: Elsevier BV
Date: 11-2012
DOI: 10.1016/J.IJNURSTU.2012.02.004
Abstract: End-stage chronic obstructive pulmonary disease (COPD) is a debilitating, life-limiting condition. A palliative approach is appropriate for in iduals with end-stage COPD, yet currently few interventions embrace this holistic, multidisciplinary and inclusive perspective. To describe interventions to support a palliative care approach in patients with end-stage COPD. Integrative review. DATA SOURCES AND REVIEW METHOD: Peer reviewed articles meeting the search criteria were accessed from Medline, PsychINFO, CINAHL and Google Scholar databases as well as Caresearch online resource. The domains of quality palliative care developed by Steinhauser were used as the conceptual framework to synthesise information. This review has shown that a range of palliative interventions are used to address the needs of in iduals with end-stage COPD. Although evidence exists for discrete elements of palliative management in this patient group, there is limited evidence for health service coordination and models that integrate the multiple domains of palliative care with active management. Further investigation is required to address the complex personal, provider and system elements associated with managing end-stage COPD. A comprehensive and collaborative approach is required to address the complex and varied needs of in iduals with end-stage COPD and their families.
Publisher: Elsevier BV
Date: 10-2014
DOI: 10.1016/J.JAMDA.2014.06.006
Abstract: To describe Chinese nursing home residents' knowledge of advance directive (AD) and end-of-life care preferences and to explore the predictors of their preference for AD. Population-based cross-sectional survey. Nursing homes (n = 31) in Wuhan, Mainland Southern China. Cognitively intact nursing home residents (n = 467) older than 60 years. Face-to-face questionnaire interviews were used to collect information on demographics, chronic diseases, life-sustaining treatment, AD, and other end-of-life care preferences. Most (95.3%) had never heard of AD, and fewer than one-third (31.5%) preferred to make an AD. More than half (52.5%) would receive life-sustaining treatment if they sustained a life-threatening condition. Fewer than one-half (43.3%) chose doctors as the surrogate decision maker about life-sustaining treatment, whereas most (78.8%) nominated their eldest son or daughter as their proxy. More than half (58.2%) wanted to live and die in their present nursing homes. The significant independent predictors of AD preference included having heard of AD before (odds ratio [OR] 9.323), having definite answers of receiving (OR 3.433) or rejecting (OR 2.530) life-sustaining treatment, and higher Cumulative Illness Rating Scale score (OR 1.098). Most nursing home residents did not know about AD, and nearly one-third showed positive attitudes toward it. AD should be promoted in mainland China. Education of residents, the proxy decision maker, and nursing home staff on AD is very important. Necessary policy support, legislation, or practice guidelines about AD should be made with flexibility to respect nursing home residents' rights in mainland China.
Publisher: Public Library of Science (PLoS)
Date: 07-08-2017
Publisher: SAGE Publications
Date: 30-05-2022
DOI: 10.1177/02692163221100108
Abstract: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. An exploratory qualitative study, using semi-structured interviews. Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia and snowballing. Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and in idualised (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.
Publisher: Informa UK Limited
Date: 06-05-2016
Publisher: Springer Science and Business Media LLC
Date: 07-07-2023
Publisher: SAGE Publications
Date: 24-03-2015
Abstract: While ‘home’ is cited most frequently as being the preferred place of death, most people will die in institutions. Yet, the meaning and significance of home for people nearing the end of life has not been fully explored. The aim of this article is to critically examine the meaning of home for dying patients and their families. The qualitative study used video-reflexive ethnography methods. Data were collected and analysed over an 18-month period. Participants were recruited from two Australian sites: a palliative care day hospital and an acute hospital. Participants included patients with a prognosis of 6 months or less ( n = 29), their nominated family member(s) ( n = 5) and clinicians ( n = 36) caring for them. Patients and families were ‘followed’ through care settings including the palliative care unit and into their own homes. Whether or not participants deemed space(s) safe or unsafe was closely related to the notion of home. Six themes emerged concerning this relationship: ‘No place like home’ ‘Safety, home and the hospital’ ‘Hospital “becomes” home’ ‘Home “becomes” hospital’ ‘Hospital and “connections with home”’ and ‘The built environment’. Home is a dynamic concept for people nearing the end of life and is concerned with expression of social and cultural identity including symbolic and affective connections, as opposed to being merely a physical dwelling place or street address. Clinicians caring for people nearing the end of life can foster linkages with home by facilitating connections with loved ones and meaningful artefacts.
Publisher: Springer Science and Business Media LLC
Date: 08-06-2023
DOI: 10.1186/S12904-023-01150-3
Abstract: Palliative care is increasingly important in the prison setting, but information about the quality and accessibility of this care is extremely limited. Developing and implementing standardised quality indicators will provide transparency, accountability, and a platform for quality improvement at both local and national levels.
Publisher: Elsevier BV
Date: 12-2019
Publisher: Oxford University Press (OUP)
Date: 08-2019
Abstract: There is a need to improve cardiovascular nurses’ knowledge and practices related to stroke prevention, atrial fibrillation and anticoagulation therapy. The aim of this study was to evaluate the efficacy of EVICOAG – a novel mHealth, smartphone-based, spaced-learning intervention on nurses’ knowledge of atrial fibrillation and anticoagulation. Nurses employed in four clinical specialties (neuroscience, stroke, rehabilitation, cardiology) across three hospitals were invited to participate. In this quasi-experimental study, 12 case-based atrial fibrillation and anticoagulation learning scenarios (hosted by an mHealth platform) were delivered to participants’ smartphones over a 6-week period (July–December 2016) using a spaced timing algorithm. Electronic surveys to assess awareness and knowledge were administered pre (T1) and post (T2) intervention. From 74 participants recruited to T1, 40 completed T2. There was a 54% mean improvement in knowledge levels post-intervention. The largest improvement was achieved in domains related to medication interaction and stroke and bleeding risk assessment. Post-intervention, those who completed T2 were significantly more likely to use CHA 2 DS 2 -VASc (2.5% vs. 37.5%) and HAS-BLED (2.5% vs. 35%) tools to assess stroke and bleeding risk, respectively ( P .01). The EVICOAG intervention improved nurses’ knowledge of atrial fibrillation and anticoagulation, and influenced their uptake and use of stroke and bleeding risk assessment tools in clinical practice. Future research should focus on whether a similar intervention might improve patient-centred outcomes such as patients’ knowledge of their condition and therapies, medication adherence, time in the therapeutic range and quality of life.
Publisher: Elsevier BV
Date: 12-2018
DOI: 10.1016/J.PMN.2018.07.008
Abstract: Pain is highly prevalent in all health care settings, and frequently poorly managed. Effective pain management is predicated on a continuous cycle of screening, assessing, intervening and evaluating. Identifying gaps in nurses' self-perceived pain assessment competencies is an essential first step in the design of tailored interventions to embed effective pain assessment into routine clinical practice, and improve patient reported pain outcomes. Yet, few validated instruments focus on the competencies required for undertaking a comprehensive pain assessment, with most focusing on clinician's pain management competencies. To examine the validity of the 'Self-Perceived Pain Assessment Knowledge and Confidence' (Self-PAC) Scale. Preliminary instrument validation. Two Australian cancer and palliative care services. 186 cancer and palliative care nurses. The Self-PAC Scale was administered to participants online. Factor Analyses, including Exploratory and Confirmatory, were applied to examine the structural validity, Cronbach's alpha was calculated for internal consistency. Criterion validity was investigated by comparing responses from experienced and non-experienced nurses. Two components resulted with a single factor structure for pain assessment confidence and a two-factor structure for the knowledge of pain assessment. The factor loading for the subscales ranged from 0.653 to 0.969, with large proportions of the variances explained by the factors. Cronbach's alpha of the subscales ranged from 0.87-0.92 and significant difference in responses were found between experienced and non-experienced nurses. Preliminary validation of the Self-PAC Scale suggests that it is a helpful instrument for assessing cancer and palliative care nurse' pain assessment competencies.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 05-2015
Publisher: Elsevier BV
Date: 06-2020
Publisher: Springer Science and Business Media LLC
Date: 20-04-2021
DOI: 10.1007/S40271-021-00517-Z
Abstract: Most health care systems are facing the challenge of providing health services to support the increasing numbers of older people with chronic life-limiting conditions at the end of life. Many policies focus primarily on increasing the proportion of deaths at home. This study aims to investigate preferences for care throughout the latter stages of a life-limiting illness, particularly the importance of location of care, location of death, and the use of life-sustaining measures. It focuses on preferences for the care of an older person with advanced cancer in the last 3 weeks of life. A survey using discrete choice experiment (DCE) methods was completed online by a general population s le of 1548 Australians aged 45 years and over. The experiment included 12 attributes, and each respondent completed 11 choice sets. Analysis was by a mixed logit model and latent class analysis (LCA). The most important attributes influencing care preferences were cost, patient anxiety, pain control, and carer stress (relative importance scores 0.21, 0.19, 0.14, and 0.14, respectively), with less importance given to place of care and place of death (relative importance scores 0.03 and 0.01). The model predicted that 42% would consider receiving most care in hospital better than at home (58%) holding the levels of other attributes constant across the alternatives, while 42% would consider death in hospital better than at home (58%). Three population segments with different preferences were identified by the LCA, the largest (46.5%) prioritised how the patient and carer felt as well as the pain control achieved, the next largest (28.1%) prioritised cost, and the smallest segment (25.4%) prioritised a single room when an inpatient. This study shows that investment in services to support people at the end of life would be better targeted toward programmes that improve patient and carer wellbeing irrespective of the location of care and death.
Publisher: Springer Berlin Heidelberg
Date: 2014
Publisher: Springer Science and Business Media LLC
Date: 25-04-2019
Publisher: Elsevier BV
Date: 12-2019
Publisher: SAGE Publications
Date: 04-02-2020
Abstract: People with dementia requiring palliative care have multiple needs, which are lified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs. The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care. Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649). Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records – July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and ⩾1 other domain. Fifty-one papers were included, reporting on 32 studies. For each domain (1–10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management n = 19), 6 (avoiding overly aggressive treatment n = 18) and 10 (education n = 17) were the most commonly addressed Domain 5 (prognostication n = 7) and 4 (continuity of care n = 2) were the least addressed. Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population.
Publisher: Springer Science and Business Media LLC
Date: 08-07-2023
DOI: 10.1186/S12913-023-09786-W
Abstract: Lymphoedema is a common, distressing, and debilitating condition affecting more than 200 million people globally. There is a small body of evidence to guide lymphoedema care which underpins several lymphoedema clinical practice guidelines developed for high-income countries (HIC). Some of these recommendations are unlikely to be feasible in low-resource settings. To develop practice points for healthcare workers that optimise lymphoedema care in low- and middle-income countries (LMIC). A nominal group technique (NGT) was undertaken to gain consensus on which content from HIC guidelines was important and feasible to include in practice points for LMIC, and other important advice or recommendations. Participants included experts, clinicians, and volunteers involved in lymphoedema care in LMIC. The NGT followed five key stages: silent ‘ideas’ generation, round-robin rationale, clarification, refinement and verification. The first, fourth and fifth stages were completed via email, and the second and third during a video meeting in order to generate a series of consensus based prevention, assessment, diagnosis, and management of lymphoedema in LMIC practice points. Of sixteen participants invited, ten members completed stage 1 of the NGT (ideas generation), of whom six contributed to stages 2 (round-robin) and 3 (clarification). All those who completed stage 1 also completed stages 4 (refinement) and 5 (verification). Practice points unanimously agreed on included Complex Decongestive Therapy (CDT) and good skin care, with management to be determined by lymphoedema stage. For podoconiosis-endemic areas, the use of socks and shoes was identified as very important in the prevention of non-filarial lymphoedema and other lymphoedema-causing conditions. Participants indicated that diagnosing lymphoedema using the lymphoscintigraphy and Indocyanine green (ICG) fluorescent lymphography was not possible due to unavailability and cost in LMIC. Surgical procedures for lymphoedema management were unanimously eliminated due to the unavailability of technology, limited workforce, and expensive cost in LMIC. The consensus-based practice points generated by this project provide healthcare workers with guidance on caring for people with lymphoedema in LMIC. Further development of workforce capacity is needed.
Publisher: Elsevier BV
Date: 11-2016
DOI: 10.1016/J.CTCP.2016.07.003
Abstract: Emerging evidence suggests that some people living with non-communicable diseases (NCDs) have integrated energy healing into their self-management strategy, however little is known about its efficacy. To identify energy healing interventions that impacted positively on the symptom management outcomes for patients living in the community with various NCDs. A systematic review of energy healing interventions for the management of non-communicable disease related symptoms, conducted between 01 January 2000 and 21 April 2015, published in an English peer-reviewed journal. This review conforms to the PRISMA statement. Twenty seven studies were identified that evaluated various energy healing interventions involving 3159 participants. Thirteen of the energy healing trials generated statistically significant outcomes. Energy healing has demonstrated some improvement in illness symptoms, however high level evidence consistently demonstrating efficacy is lacking. Further more robust trials are required to better understand which elements of energy healing interventions are associated with positive outcomes.
Publisher: American Medical Association (AMA)
Date: 04-2021
DOI: 10.1001/JAMAONCOL.2020.6736
Abstract: Older adults with cancer are at risk of overtreatment or undertreatment when decision-making is based solely on chronological age. Although a geriatric assessment is recommended to inform care, the time and expertise required limit its feasibility for all patients. Screening tools offer the potential to identify those who will benefit most from a geriatric assessment. Consensus about the optimal tool to use is lacking. To appraise the evidence on screening tools used for older adults with cancer and identify an optimal screening tool for older adults with cancer who may benefit from geriatric assessment. Systematic review of 4 databases (MEDLINE, Embase, CINAHL [Cumulative Index to Nursing and Allied Health Literature], and PubMed) with narrative synthesis from January 1, 2000, to March 14, 2019. Studies reporting on the diagnostic accuracy and use of validated screening tools to identify older adults with cancer who need a geriatric assessment were eligible for inclusion. Data were analyzed from March 14, 2019, to March 23, 2020. Seventeen unique studies were included, reporting on the use of 12 screening tools. Most studies were prospective cohort studies (n = 11) with only 1 randomized clinical trial. Not all studies reported time taken to administer the screening tools. The Geriatric-8 (G8) (n = 12) and the Vulnerable Elders Survey-13 (VES-13) (n = 9) were the most frequently evaluated screening tools. The G8 scored better in sensitivity and the VES-13 in specificity. Other screening tools evaluated include the Groningen Frailty Index, abbreviated comprehensive geriatric assessment, and Physical Performance Test in 2 studies each. All other screening tools were evaluated in 1 study each. To date, the G8 and VES-13 have the most evidence to recommend their use to inform the need for geriatric assessment. When choosing a screening tool, clinicians will need to weigh the tradeoffs between sensitivity and specificity. Future research needs to further validate or improve current screening tools and explore other factors that can influence their use, such as ease of use and resourcing.
Publisher: Wiley
Date: 11-2016
DOI: 10.1111/IMJ.13224
Abstract: Australian clinical trials are planned to evaluate medicinal cannabis in a range of clinical contexts. To explore the preferences, attitudes and beliefs of patients eligible and willing to consider participation in a clinical trial of medicinal cannabis for poor appetite and appetite-related symptoms from advanced cancer. A cross-sectional anonymous survey was administered from July to December 2015 online and in eight adult outpatient palliative care and/or cancer services. Respondents were eligible if they were ≥18 years, had advanced cancer and poor appetite/taste problems/weight loss and might consider participating in a medicinal cannabis trial. Survey items focused on medicinal rather than recreational cannabis use and did not specify botanical or pharmaceutical products. Items asked about previous medicinal cannabis use and preferences for delivery route and invited comments and concerns. There were 204 survey respondents, of whom 26 (13%) reported prior medicinal cannabis use. Tablets/capsules were the preferred delivery mode (n = 144, 71%), followed by mouth spray (n = 84, 42%) and vaporiser (n = 83, 41%). Explanations for preferences (n = 134) most commonly cited convenience (n = 66 49%). A total of 82% (n = 168) of respondents indicated that they had no trial-related concerns, but a small number volunteered concerns about adverse effects (n = 14) or wanted more information/advice (n = 8). Six respondents volunteered a belief that cannabis might cure cancer, while two wanted assurance of efficacy before participating in a trial. Justification of modes other than tablets/capsules and variable understanding about cannabis and trials will need addressing in trial-related information to optimise recruitment and ensure that consent is properly informed.
Publisher: Elsevier BV
Date: 06-2020
Publisher: CSIRO Publishing
Date: 2019
DOI: 10.1071/AH17289
Abstract: Objective The aim of the present study was to compare the health status of South Australians with recent experience of caring for an adult with chronic disease with non-carers drawn from the same population. Methods Data were collected via the South Australian Health Omnibus, an annual population-based, cross-sectional survey. Respondents were asked whether they had provided care or support in the last 5 years to someone with cancer, heart disease, respiratory disease, mental illness, neurological disease or dementia. Health status was measured using the Short Form-12 version 1 (SF-12) physical and mental component scale summary scores (PCS and MCS respectively), with poor health status defined as ≥0.5 standard deviation below the normative mean. Logistic regression explored characteristics associated with poor health status. Results Of 3033 respondents analysed, 987 (32.5%) reported caring experience. Poor PCS and MCS were associated with carer status, lower-than-degree-level education, employment status other than employed and annual household income less than A$60000. Being Australian born was a protective factor for PCS, whereas factors protective for MCS were being married or in a de facto relationship and age ≥65 years. Conclusions Providing care or support in the last 5 years is independently associated with poorer health status, but not with the magnitude found in studies of current carers. Future research should explore health status recovery after completion of the caring role, and investigate whether relationships between health and socioeconomic status differ for carers versus non-carers. What is known about the topic? Population-based survey studies in Australia and overseas have consistently found that informal carers have worse health status than non-carers. What does this paper add? Including recent as well as current carers in a population-based s le was associated with less effect on health status compared with studies focused on current carers only. This finding is consistent with the possibility that health status recovers during the 5 years after caring. What are the implications for practitioners? Support for Australian carers is warranted to ensure their continuing contributions to society and return to productivity after their caring role is completed.
Publisher: Oxford University Press (OUP)
Date: 08-07-2016
Abstract: Anxiety is a serious affective mood disorder that affects many chronic heart failure patients. While there is le evidence that depression increases hospitalisations and mortality in chronic heart failure patients, it is unclear whether this association also exists for anxiety. The purpose of this study was to report on prospective cohort studies investigating anxiety in chronic heart failure patients and its association with hospitalisations and mortality rates. This systematic review aims to improve the current knowledge of anxiety as a potential prognostic predictor in chronic heart failure populations. This systematic review adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Studies were identified by accessing electronic databases Embase, Medline, Cumulative Index to Nursing and Allied Health Literature and PsycINFO. Studies were included if they: employed a prospective cohort study design, included chronic heart failure participants with a confirmed clinical diagnosis plus anxiety confirmed by a validated anxiety assessment tool and/or clinical diagnosis and reported longitudinal hospitalisation rates and mortality data in chronic heart failure. Six studies were identified for inclusion. A study investigating hospitalisations and mortality rates found a significant (p<0.05) association solely between hospitalisation and anxiety. Of four studies reporting on hospitalisations alone, only two reported significant associations with anxiety. One study reported rates of mortality alone and identified no significant associations between mortality and anxiety. There was some variation in quality of the studies in regards to their methodology, analysis and reported measures/outcomes, which may have affected the results reported. It is possible that anxiety does predict hospitalisations in chronic heart failure populations, however further research is required to confirm this observation.
Publisher: Springer Science and Business Media LLC
Date: 18-04-2013
Publisher: Wiley
Date: 09-06-2021
DOI: 10.1111/JOCN.15885
Abstract: Older adults living with dementia frequently transition between healthcare settings. Care transitions increase vulnerability and risk of iatrogenic harm. To examine the quality of transitional care arrangements within discharge documentation for older people living with dementia. Secondary analysis of cohort study data. A secondary analysis of the IDEAL Study [ACTRN12612001164886] discharge documents, following the STROBE guidelines. Participants had a confirmed diagnosis of dementia and were discharged from hospital to a nursing home. An audit tool was used to extract the data. This was developed through a synthesis of existing tools and finalised by an expert panel. The analysis assessed the quality of discharge documentation, in the context of transitional care needs, and presented results using descriptive statistics. Functional ability physical health cognition and mental health medications and socio environmental factors were assessed. Sixty participants were included in analyses, and half were male (52%), with a total participant mean age of 83 (SD 8.7) years. There was wide variability in the quality of core discharge information, ranging from excellent (37%), adequate (43%) to poor (20%). A sub‐group of these core discharge documentation elements that detailed the participants transitional care needs were rated as follows: excellent (17%), adequate (46%) and poor (37%). Discharge documentation fails to meet needs of people living with dementia. Improving the quality of discharge documentation for people living with dementia transitioning from hospital to nursing home is critical to provide safe and quality care. There is a need for safe, timely, accurate and comprehensive discharge information to ensure the safety of people living with dementia and prevent adverse harm.
Publisher: Springer Science and Business Media LLC
Date: 06-04-2022
DOI: 10.1186/S12890-022-01925-Z
Abstract: The battery-operated hand-held fan (‘fan’) is an inexpensive and portable non-pharmacological intervention for chronic breathlessness. Evidence from randomised controlled trials suggests the fan reduces breathlessness intensity and improves physical activity in patients with a range of advanced chronic conditions. Qualitative data from these trials suggests the fan may also reduce anxiety and improve daily functioning for many patients. This study aimed to explore barriers and facilitators to the fan’s implementation in specialist respiratory care as a non-pharmacological intervention for chronic breathlessness in patients with chronic obstructive pulmonary disease (COPD). A qualitative approach was taken, using focus groups. Participants were clinicians from any discipline working in specialist respiratory care at two hospitals. Questions asked about current fan-related practice and perceptions regarding benefits, harms and mechanisms, and factors influencing its implementation. Analysis used a mixed inductive/deductive approach. Forty-nine participants from nursing (n = 30), medical (n = 13) and allied health (n = 6) disciplines participated across 9 focus groups. The most influential facilitator was a belief that the fan’s benefits outweighed disadvantages. Clinicians’ beliefs about the fan’s mechanisms determined which patient sub-groups they targeted, for ex le anxious or palliative/end-stage patients. Barriers to implementation included a lack of clarity about whose role it was to implement the fan, what advice to provide patients, and limited access to fans in hospitals. Few clinicians implemented the fan for acute-on-chronic breathlessness or in combination with other interventions. Implementation of the fan in specialist respiratory care may require service- and clinician-level interventions to ensure it is routinely recommended as a first-line intervention for chronic breathlessness in patients for whom this symptom is of concern, regardless of COPD stage.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 10-09-2013
DOI: 10.1200/JCO.2013.31.26_SUPPL.136
Abstract: 136 Background: Women with metastatic breast cancer may survive for many years after disease onset, and there is little published evidence on their habitual levels of physical activity. The aim of this study was to investigate differences in physical activity levels and physical fitness between women with and without metastatic breast cancer. Methods: Seventy-one women with metastatic breast cancer (METS) aged 57.7 ± 9.5 y and 2.9 ± 3.1 y after disease onset, and 71 healthy controls (CONTROLS) aged 55.0 ± 9.4 y participated. Of those with metastatic disease, 27% had metastases in bone only, 35% in viscera only and 38% in both bone and viscera. Strength was measured using hand and leg dynamometry, aerobic fitness using the Modified Canadian Aerobic Fitness Test, and fatigue with the FACT-Fatigue questionnaire. Participants wore a SenseWear physical activity armband over 6 days, and the average steps taken per day over 5 of these days, where there was a minimum wear time of 8 hours per day, was derived. Results: METS possessed lower aerobic fitness than CONTROLS (25.3 ± 5.4 versus 31.9 ± 6.1 ml·kg·min -1 respectively p .01). METS were significantly weaker than CONTROLS. Lower limb strength for the METS and CONTROLS was 53.8 ± 23.7 versus 76.0 ± 27.4 kg and handgrip strength was 26.6 ± 6.0 versus 30.2 ± 6.4 kg. METS were also significantly less active, attaining only 57% of the daily step counts of CONTROLS. Fatigue was significantly higher in women with metastatic cancer compared to their healthy counterparts (38.0 ± 9.8 versus 46.3 ± 4.6 p .01). Correlation between fatigue with average steps per day (r=0.46), handgrip strength (r=0.29) and leg strength (r=0.26) was low in the METS group. Conclusions: Women living in the community with metastatic breast cancer are weaker, have lower aerobic fitness, and are relatively inactive compared to their healthy counterparts. Increased fatigue in these women is poorly associated with their decreased physical activity levels, hand and lower limb strength. Women with metastatic breast cancer may benefit from a program directed at improving their strength and fitness. Acknowledgements: Funded by National Breast Cancer Foundation, Australia.
Publisher: Elsevier BV
Date: 12-2019
Publisher: Elsevier BV
Date: 12-2019
Publisher: Elsevier BV
Date: 04-2018
DOI: 10.1016/J.NEDT.2018.01.015
Abstract: The nursing profession has a significant evidence to practice gap in an increasingly complex and dynamic health care environment. To evaluate effectiveness of teaching and learning strategies related to a capstone project within a Masters of Nursing program that encourage the development of evidence based practice capabilities. Systematic review that conforms to the PRISMA statement. Master's Nursing programs that include elements of a capstone project within a university setting. MEDLINE, CINAHL, Cochrane Database of Systematic Reviews, ERIC and PsycInfo were used to search for RCT's or quasi experimental studies conducted between 1979 and 9 June 2017, published in a peer reviewed journal in English. Of 1592 studies, no RCT's specifically addressed the development of evidence based practice capabilities within the university teaching environment. Five quasi-experimental studies integrated blended learning, guided design processes, small group work, role play and structured debate into Masters of Nursing research courses. All five studies demonstrated some improvements in evidence based practice skills and/or research knowledge translation, with three out of five studies demonstrating significant improvements. There is a paucity of empirical evidence supporting the best strategies to use in developing evidence based practice skills and/or research knowledge translation skills for Master's Nursing students. As a profession, nursing requires methodologically robust studies that are discipline specific to identify the best approaches for developing evidence-based practice skills and/or research knowledge translation skills within the university teaching environment. Provision of these strategies will enable the nursing profession to integrate the best empirical evidence into nursing practice.
Publisher: Springer Science and Business Media LLC
Date: 13-04-2019
Publisher: Cambridge University Press (CUP)
Date: 27-06-2017
DOI: 10.1017/S1041610217000977
Abstract: Palliative care for nursing home residents with advanced dementia is often sub-optimal due to poor communication and limited care planning. In a cluster randomized controlled trial, registered nurses (RNs) from 10 nursing homes were trained and funded to work as Palliative Care Planning Coordinators (PCPCs) to organize family case conferences and mentor staff. This qualitative sub-study aimed to explore PCPC and health professional perceptions of the benefits of facilitated case conferencing and identify factors influencing implementation. Semi-structured interviews were conducted with the RNs in the PCPC role, other members of nursing home staff, and physicians who participated in case conferences. Analysis was conducted by two researchers using a thematic framework approach. Interviews were conducted with 11 PCPCs, 18 other nurses, eight allied health workers, and three physicians. Perceived benefits of facilitated case conferencing included better communication between staff and families, greater multi-disciplinary involvement in case conferences and care planning, and improved staff attitudes and capabilities for dementia palliative care. Key factors influencing implementation included: staffing levels and time support from management, staff and physicians and positive family feedback. The facilitated approach explored in this study addressed known barriers to case conferencing. However, current business models in the sector make it difficult for case conferencing to receive the required levels of nursing qualification, training, and time. A collaborative nursing home culture and ongoing relationships with health professionals are also prerequisites for success. Further studies should document resident and family perceptions to harness consumer advocacy.
Publisher: SAGE Publications
Date: 28-06-2019
Abstract: Delirium is common, distressing, serious and under-researched in specialist palliative care settings. To examine whether people requiring palliative care were included in non-pharmacological delirium intervention studies in inpatient settings, how they were characterised and what their outcomes were. Systematic review (PROSPERO 2017 CRD42017062178). Systematic search in March 2017 for non-pharmacological delirium intervention studies in adult inpatients. Database search terms were ‘delirium’, ‘hospitalisation’, ‘inpatient’, ‘palliative care’, ‘hospice’, ‘critical care’ and ‘geriatrics’. Scottish Intercollegiate Guidelines Network methodological checklists guided risk of bias assessment. The 29 included studies were conducted between 1994 and 2015 in erse settings in 15 countries (9136 participants, mean age = 76.5 years ( SD = 8.1), 56% women). Most studies tested multicomponent interventions ( n = 26) to prevent delirium ( n = 19). Three-quarters of the 29 included studies ( n = 22) excluded various groups of people requiring palliative care however, inclusion criteria, participant diagnoses, illness severity and mortality indicated their presence in almost all studies ( n = 26). Of these, 21 studies did not characterise participants requiring palliative care or report their specific outcomes (72%), four reported outcomes for older people with frailty, dementia, cancer and comorbidities, and one was explicitly focused on people receiving palliative care. Study heterogeneity and limitations precluded definitive determination of intervention effectiveness and only allowed interpretations of feasibility for people requiring palliative care. Acceptability outcomes (intervention adverse events and patients’ subjective experience) were rarely reported overall. Non-pharmacological delirium interventions have frequently excluded and under-characterised people requiring palliative care and infrequently reported their outcomes.
Publisher: Elsevier BV
Date: 02-2022
Publisher: Wiley
Date: 05-2016
DOI: 10.5694/MJA16.00066
Abstract: Chronic non-cancer pain (lasting more than 3 months) is highly prevalent in Australia (17% of males and 20% of females) and its optimal management is crucial to the health and wellbeing of the community. For 5% of the population, such pain interferes markedly with daily function. Part of the treatment for acute non-cancer pain for many people will include opioid analgesics at least for days to weeks. However, as pain becomes chronic, evidence to support ongoing prescription of opioids is lacking. There is increasing pressure to ensure that prescribing opioid analgesics is minimised to reduce not only the risk of dependence and illicit ersion but also the potential harms associated with tolerance, side effects and complications. Frameworks for considering opioid prescribing include assessing suitability of the patient for opioids initiating a trial of therapy and monitoring long term use. There is limited evidence of the long term efficacy of opioids for chronic non-cancer pain, and documented clinical consequences beyond addiction include acceleration of loss of bone mineral density, hypogonadism and an association with increased risk of acute myocardial infarction. Careful clinical selection of patients can help optimise the evidence-based use of opioids for chronic non-cancer pain: only treat pain that has been as well defined as possible when non-opioid therapies have not been effective consider referral to specialist services for assessment if doses are above 100 mg oral morphine equivalent per 24 hours or the duration of therapy is longer than 4 weeks limit prescribing to only one practitioner seek an agreement with the patient for the initiation and potential withdrawal of opioids if the therapeutic trial is not effective.
Publisher: BMJ
Date: 04-01-2018
DOI: 10.1136/BMJSPCARE-2017-001432
Abstract: The importance of measuring the quality of end-of-life care provision is undisputed, but determining how best to achieve this is yet to be confirmed. This study sought to identify and describe national end-of-life care quality indicators and supporting policies used by countries leading in their end-of-life care provision. A systematic environmental scan that included a web search to identify relevant national policies and indicators hand searching for additional materials information from experts listed for the top 10 (n=15) countries ranked in the ‘quality of care’ category of the 2015 Quality of Death Index study and snowballing from Index experts. Ten countries (66%) have national policy support for end-of-life care measurement, five have national indicator sets, with two indicator sets suitable for all service providers. No countries mandate indicator use, and there is limited evidence of consumer engagement in development of indicators. Two thirds of the 128 identified indicators are outcomes measures (62%), and 38% are process measures. Most indicators pertain to symptom management (38%), social care (32%) or care delivery (27%). Measurement of end-of-life care quality varies globally and rarely covers all care domains or service providers. There is a need to reduce duplication of indicator development, involve consumers, consider all care providers and ensure measurable and relevant indicators to improve end-of-life care experiences for patients and families.
Publisher: Springer Science and Business Media LLC
Date: 21-11-2015
Publisher: European Respiratory Society (ERS)
Date: 08-2017
DOI: 10.1183/13993003.00262-2017
Abstract: This study explored the benefits of a hand-held fan as perceived by patients with chronic breathlessness and their carers.A secondary multimethod analysis was conducted of interview data collected in three clinical trials. Two researchers independently coded level of benefit qualitatively reported by each patient. Univariate and multivariate statistics were used to explore perceived benefit as a factor of sex, age and diagnosis. Qualitative analysis used an integrative method.133 patients commented on the fan, of whom 72 had a carer. Diagnoses included nonmalignant (n=91, 68.4%) and malignant (n=21, 15.8%) conditions. Of 111 patients who provided codable data, four (3.6%) perceived no benefit, 16 (14.4%) were uncertain, 80 (72.0%) perceived some benefit and 11 (10.0%) perceived very substantial benefit. Multivariate analysis was inconclusive. Benefit was described in terms of shorter recovery time, especially after activity. 10 (7.5%) patients said the fan reduced their need for home oxygen or inhaled β-agonist medications. Negative perceptions of a few included dislike of the cooling sensation and embarrassment in public.Findings suggest that a hand-held fan is a portable intervention with few disadvantages from which most patients with chronic breathlessness will derive benefit alongside other nonpharmacological and pharmacological strategies. Research is needed to optimise guidance on fan administration.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 03-2016
Publisher: Elsevier BV
Date: 2017
DOI: 10.1016/J.ARCHGER.2016.08.008
Abstract: Pain is one of the most distressing and debilitating health issues faced by older people. The burden of unrelieved pain experienced by older people and its associated high symptom and economic costs demands consideration of new strategies to better this condition. As the global uptake of digital technology increases, exploring its potential to impact positively on older peoples' pain self-management practices warrants investigation. This integrative review aimed to evaluate the use of digital health technology for management of older people's pain across care-settings. Searches were conducted to identify relevant English language studies published in CINHAL, Medline, Academic Search Complete, EMBASE, Cochrane library databases, and Google and Google Scholar websites. A total of 1003 papers were identified, 9 met the inclusion criteria. The highest level of evidence (Level II) was generated by three Phase II randomized controlled trials. These trials demonstrated the feasibility of computer based interactive or instructive video interventions however there was limited evidence to support their use for reduction of pain intensity and interference. Qualitative evidence demonstrated older people's willingness to use mobile technologies (iPhone or digital pen) to help manage their pain, however, the need of device-use training and connectedness with clinicians were highlighted. In conclusion, there is some evidence that integrating digital health technology into older peoples' pain self-management plan is feasible and acceptable. However, the provision of high-quality technological interventions informed by a thorough understanding of older people's digital technology pain management needs is required to ensure greater integration of this technology in clinical practice.
Publisher: Mary Ann Liebert Inc
Date: 11-2021
Publisher: ACM
Date: 19-04-2023
Publisher: Springer Science and Business Media LLC
Date: 21-06-2023
DOI: 10.1038/S41431-023-01409-6
Abstract: Genetic counselling and testing have utility for people with palliative care needs and their families. However, genetic and palliative care health professionals have described difficulties initiating palliative-genetic discussions. Between March and July 2022, we received n = 73 surveys (6% response rate) from genetic and palliative care health professionals in Australia and New Zealand that assessed and compared barriers and facilitators. The main perceived barrier to both groups was palliative care health professionals’ lack of genetic knowledge (44%). Most palliative care health professionals were ‘not at all confident’ performing several activities, including discussing DNA banking (52%) and knowing their legal responsibilities when sharing genetic information (58%). The most frequently selected facilitator for genetic health professionals was fostering close relationships with palliative care health professionals (52%), while palliative care health professionals indicated a genetic referral template (51%) would be of assistance. Almost all participants agreed genetic discussions do not undermine the central ethos of palliative care (87%). Fewer palliative care health professionals considered themselves well situated to have genetic discussions with a palliative patient’s family compared to genetic health professionals ( p = 0.014). Our results suggest that genetic and palliative care health professionals support integrating genetics into palliative care, although refinement of the palliative care health professionals’ role in this process is required. We have identified intervention targets to overcome barriers related to knowledge and confidence, which ought to be integrated into future interventions designed to support health professionals deliver the benefits of genetic information to people with palliative care needs and their families.
Publisher: Springer Science and Business Media LLC
Date: 12-2018
Publisher: Wiley
Date: 07-08-2015
DOI: 10.1111/JOCN.12925
Abstract: To explore nurse perceptions of the feasibility of integrating the Nursing Delirium Screening Scale into practice within the inpatient palliative care setting. Delirium occurs frequently in palliative care inpatient populations, yet is under-recognised. Exploring feasibility of delirium screening tools in this setting can provide insights into how recognition can be improved. This was a qualitative study using a focus group methodology. Four semi-structured focus groups were conducted with 21 nurses working in two Australian palliative care units. Focus groups were digitally recorded and transcribed verbatim. Thematic content analysis was used to analyse the data. Three major themes were identified: (1) Delirium screening using the Nursing Delirium Screening Scale is feasible, but then what? (2) Nuances, ambiguity and clinical complexity and (3) Implementing structured processes requires firmer foundations. Themes describe how nurses perceived the Nursing Delirium Screening Scale to be an easy and brief screening tool which raised their awareness of delirium. They were largely willing to adopt it into practice, yet had uncertainty and misunderstandings of the tool specifically and delirium screening generally, application in a palliative care context, interventions for delirium and impact of screening on medical practice. The Nursing Delirium Screening Scale is feasible for use in a palliative care inpatient setting, but requires investigation of its psychometric properties before routine use in this patient population. Nurses require understanding of delirium, tailored guidance and a united approach with doctors to support their effective use of a delirium screening tool in the palliative care unit. Delirium practice change in this setting will also require nurses to become more active leaders and collaborators within their interdisciplinary teams.
Publisher: Oxford University Press
Date: 05-2015
Publisher: SAGE Publications
Date: 31-03-2021
Publisher: Springer Science and Business Media LLC
Date: 06-05-2020
DOI: 10.1186/S12904-020-00572-7
Abstract: Chronic breathlessness is a recognized clinical syndrome that severely impacts patients and carers, who become increasingly restricted in their daily activities. Often, patients become reliant on their carers, who are required to provide constant support. Although in idual experiences of breathlessness have been previously investigated, there are few studies exploring contemporaneous experiences of breathlessness of the patient and their carer. This study aimed to understand the experience of severe chronic breathlessness in people with chronic obstructive pulmonary disease (COPD) from the perspective of the patient and carer unit. A qualitative study embedded in a randomised, placebo-controlled effectiveness study (RCT) of regular, low-dose (≤32 mg/day), sustained-release morphine for chronic breathlessness associated with COPD. Recruitment occurred between July 2017 and November 2018 in one respiratory and palliative care services, in South Australia. Participants were community-dwelling patients with COPD and severe breathlessness (modified Medical Research Council scale 3 or 4) and their carers. Separate semi-structured interviews were conducted with patients and carers, recorded and transcribed verbatim. Analysis was informed by grounded theory using a constant comparative approach. From the 26 patients with a carer recruited for the RCT in South Australia, nine were interviewed in their homes. Six patients were men, median age 77 years. Carers were mostly women, who were their wives ( n = 6), median age 70. Five themes emerged from the data: (1) shrinking world (2) mutual adaptation (3) co-management (4) emotional coping and (5) meaning in the face of death. Chronic breathlessness is a systemic condition that permeates all aspects of the patient’s and carer’s lives. Working as a team, patients and carers manage chronic breathlessness to achieve maximal function and well-being. Patients and carers share many aspects of the experience of breathlessness, but the carer seems particularly susceptible to emotional distress. Future chronic breathlessness interventions should target the patient and the carer, both together and separately to address their common and in idual needs. The main trial is registered (registration no. NCT02720822 posted March 28, 2016).
Publisher: SAGE Publications
Date: 10-2007
DOI: 10.1080/00048670701579108
Abstract: Objective: Depression and anxiety are known to be common among women presenting to residential mother–infant programmes for unsettled infant behaviour but most studies have used self-report measures of psychological symptomatology rather than diagnostic interviews to determine psychiatric diagnoses. The aim of the present study was to determine rates of depressive and anxiety disorders and rates of comorbidity among clients of the Karitane residential mother–infant programme for unsettled infant behaviour. Method: One hundred and sixty women with infants aged 2 weeks–12 months completed the Edinburgh Postnatal Depression Scale and were interviewed for current and lifetime history of depressive and anxiety disorders using the Structured Clinical Interview for DSM-IV diagnosis (Research version). Results: A total of 25.1% of the s le met criteria for a current diagnosis of major depression, 31.7% had met criteria for major depression since the start of the pregnancy, and 30.5% of clients met criteria for a current anxiety disorder. Of note were the 21.6% who met criteria for generalized anxiety disorder or anxiety disorder not otherwise specified (worry confined to the topics of the baby or being a mother). High levels of comorbidity were confirmed in the finding that 60.8% of those with an anxiety disorder had experienced major or minor depression since the start of their pregnancy and 46.3% of those who had experienced depression since the start of their pregnancy also met criteria for a current anxiety disorder. Conclusions: There are high levels of psychiatric morbidity among clients attending residential mother–infant units for unsettled infant behaviour, highlighting the importance of providing multifaceted interventions in order to address both infant and maternal psychological issues.
Publisher: SAGE Publications
Date: 03-2019
Abstract: Opioid errors are a leading cause of patient harm and adversely impact palliative care inpatients’ pain and symptom management. Yet, the factors contributing to opioid errors in palliative care are poorly understood. Identifying and better understanding the in idual and system factors contributing to these errors is required to inform targeted strategies. To explore palliative care clinicians’ perceptions of the factors contributing to opioid errors in Australian inpatient palliative care services. A qualitative study using focus groups or semi-structured interviews. Three specialist palliative care inpatient services in New South Wales, Australia. Inpatient palliative care clinicians who are involved with, and/or have oversight of, the services’ opioid delivery or quality and safety processes. Deductive thematic content analysis of the qualitative data. The Yorkshire Contributory Factors Framework was applied to identify error-contributing factors. A total of 58 clinicians participated in eight focus groups and 20 semi-structured interviews. Nine key error contributory factor domains were identified, including: active failures task characteristics of opioid preparation clinician inexperience sub-optimal skill mix gaps in support from central functions the drug preparation environment and sub-optimal clinical communication. This study identified multiple system-level factors contributing to opioid errors in inpatient palliative care services. Any quality and safety initiatives targeting safe opioid delivery in specialist palliative care services needs to consider the full range of contributing factors, from in idual to systems/latent factors, which promote error-causing conditions.
Publisher: Cambridge University Press (CUP)
Date: 12-07-2023
DOI: 10.1017/S1478951523000676
Abstract: Despite there being many models for how spiritual care should be provided, the way nurses actually provide spiritual care often differs from these models. Based on the premise that the way a person enacts their work role is related to how they understand that role, this study aims to describe the qualitatively different ways that nurses understand their spiritual care role. A convenience s le of 66 American nurses completed an anonymous, online questionnaire about what spiritual care means for them and what they generally do to provide spiritual care. Their responses were analyzed phenomenographically. Four qualitatively different ways of understanding emerged: active management of the patient’s experience, responsive facilitation of patient’s wishes, accompaniment on the patient’s dying journey, and empowering co-action with the patient. Each understanding was found to demonstrate a specific combination of 5 attributes that described the spiritual care role: nurse directivity, the cues used for spiritual assessment, and the nurse’s perception of intimacy, the patient, and the task. The findings of this study may explain why nurses vary in their spiritual care role and can be used to assess and develop competence in spiritual care.
Publisher: Springer Science and Business Media LLC
Date: 18-01-2019
Publisher: Cambridge University Press (CUP)
Date: 23-04-2019
DOI: 10.1017/S1478951518000792
Abstract: The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as “catalysts” for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system. The project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice two systematic reviews of cancer pain needs and education a desktop review of online patient pain diaries and other related resources consultation with stakeholders and interviews with patients regarding acceptability and usefulness of a draft resource. Findings suggested that an optimal self-management resource should encourage pain reporting, build patients’ sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support. Self-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.
Publisher: Mary Ann Liebert Inc
Date: 10-2020
Publisher: Public Library of Science (PLoS)
Date: 28-02-2023
DOI: 10.1371/JOURNAL.PONE.0282465
Abstract: About 70% of patients with advanced cancer experience pain. Few studies have investigated the use of healthcare in this population and the relationship between pain intensity and costs. Adults with advanced cancer and scored worst pain ≥ 2/10 on a numeric rating scale (NRS) were recruited from 6 Australian oncology alliative care outpatient services to the Stop Cancer PAIN trial (08/15-06/19). Out-of-hospital, publicly funded services, prescriptions and costs were estimated for the three months before pain screening. Descriptive statistics summarize the clinico-demographic variables, health services and costs, treatments and pain scores. Relationships with costs were explored using Spearman correlations, Mann-Whitney U and Kruskal-Wallis tests, and a gamma log-link generalized linear model. Overall, 212 participants had median worst pain scores of five (inter-quartile range 4). The most frequently prescribed medications were opioids (60.1%) and peptic ulcer/gastro-oesophageal reflux disease (GORD) drugs (51.6%). The total average healthcare cost in the three months before the census date was A$6,742 (95% CI $5,637, $7,847), approximately $27,000 annually. Men had higher mean healthcare costs than women, adjusting for age, cancer type and pain levels (men $7,872, women $4,493, p .01) and higher expenditure on prescriptions (men $5,559, women $2,034, p .01). In this population with pain and cancer, there was no clear relationship between healthcare costs and pain severity. These treatment patterns requiring further exploration including the prevalence of peptic ulcer/GORD drugs, and lipid lowering agents and the higher healthcare costs for men. ACTRN12615000064505 . World Health Organisation unique trial number U1111–1164–4649 . Registered 23 January 2015.
Publisher: Elsevier BV
Date: 2010
DOI: 10.1016/J.JAD.2009.04.011
Abstract: It has been suggested that there may be two groups of women with postnatal depression (PND) - one who have a history of depression and whose depression is etiologically similar to depression experienced at other times of life, and another who develop depression de novo in the postnatal period and whose depression is uniquely 'postnatal'. The primary aim of this study was to clarify the role of negative attitudes (general and maternal-specific) for these proposed subtypes, whilst also considering the role of a range of other potentially relevant etiological factors. 157 postnatal women were classified into four groups: (i) 'recurrent depression', (ii) 'de novo PND', (iii) 'prior (but not current) depression', (iv) 'healthy control'. Groups were compared on known vulnerability and situational risk factors for depression including negative attitudes (general and maternal-specific), personality style vulnerability, relationship insecurity, low social support, stressful life events and difficult infant behaviour. Hierarchical regressions were conducted to examine the role of general and maternal-specific negative attitudes in mediating the relationship between previous depression and PND. Women with recurrent depression had more personality vulnerability and maternal-specific negative attitudes than women with de novo PND, but there were no differences in general negative attitudes or relationship insecurity. Non-depressed women with a history of prior depression were characterized by elevated general depression vulnerability but lower maternal-specific negative attitudes. General negative attitudes mediated the relationship between previous depression and PND. All participants had unsettled infants and the generalizability of results to general postpartum s les is not known. Although these results do not provide support for the proposed subtypes of PND, they highlight encouraging new avenues for cognitively based preventative interventions.
Publisher: Hindawi Limited
Date: 2016
DOI: 10.1111/JONM.12353
Publisher: Elsevier BV
Date: 09-2019
DOI: 10.1016/J.JPAINSYMMAN.2019.05.020
Abstract: Pain and delirium are highly prevalent in the same patient groups. Disturbances in attention, awareness, and cognition are characteristics for delirium and can compromise pain assessment. The aim of this review was to examine and map models and understandings of pain and delirium as well as pain assessment instruments and strategies for adult patients with delirium. A scoping review of all publications that reported on pain assessment in adult patients with delirium was conducted with no time and language constraints, searching Medline, CINAHL, Scopus, Embase, and PsycINFO and systematically assessing for inclusion. Standardized data extraction and a narrative synthesis followed. A total of 90 publications were included in the final analysis. Despite being recommended for practice, no evidence for the use of self-report or behavioral pain assessment instruments in patients with delirium was identified, with the exception of limited evidence for the validity of the Critical Care Pain Observation Tool and Behavioral Pain Scale in delirious intensive care patients. Proxy ratings of pain and comprehensive pain assessment hierarchies were also recommended, but not supported by evidence. Current models and/or understandings of pain and delirium were not applied in most publications. The current literature is insufficient to guide clinical practice in pain assessment in patients with delirium. Future research will be needed to address the validity of existing pain assessment instruments, apply theoretical and conceptual understandings of pain and delirium, and build on prior studies to close evidence gaps.
Publisher: Elsevier BV
Date: 11-2021
Publisher: Springer Science and Business Media LLC
Date: 19-01-2023
DOI: 10.1007/S11060-023-04239-0
Abstract: High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress. We conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients’ combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs (2) tailored hard-copy resource folder (3) home visit and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain. We randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model β = 2.85, 95% CI 0.76–4.93) and all follow-up timepoints including 12 months (model β = 4.35, 95% CI 2.08–6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes. This intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating rogressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.
Publisher: Springer Science and Business Media LLC
Date: 22-09-2023
Publisher: Elsevier BV
Date: 02-2018
Publisher: Springer Science and Business Media LLC
Date: 26-05-2016
Abstract: Chronic breathlessness is a common, burdensome and distressing symptom in many advanced chronic illnesses. Self-management strategies are essential to optimise treatment, daily functioning and emotional coping. People with chronic illness commonly search the internet for advice on self-management. A review was undertaken in June 2015 to describe the content and quality of online advice on breathlessness self-management, to highlight under-served areas and to identify any unsafe content. Google was searched from Sydney, Australia, using the five most common search terms for breathlessness identified by Google Trends. We also hand-searched the websites of national associations. Websites were included if they were freely available in English and provided practical advice on self-management. Website quality was assessed using the American Medical Association Benchmarks. Readability was assessed using the Flesch–Kincaid grades, with grade 8 considered the maximum acceptable for enabling access. Ninety-one web pages from 44 websites met the inclusion criteria, including 14 national association websites not returned by Google searches. Most websites were generated in the USA ( n =28, 64%) and focused on breathing techniques ( n =38, 86%) and chronic obstructive pulmonary disease ( n =27, 61%). No websites were found to offer unsafe advice. Adherence to quality benchmarks ranged from 9% for disclosure to 77% for currency. Fifteen (54%) of 28 written websites required grade ⩾9 reading level. Future development should focus on advice and tools to support goal setting, problem solving and monitoring of breathlessness. National associations are encouraged to improve website visibility and comply with standards for quality and readability.
Publisher: Elsevier BV
Date: 04-2017
DOI: 10.1016/J.PMN.2017.01.003
Abstract: Unrelieved cancer pain has an adverse impact on quality of life. While routine screening and assessment forms the basis of effective cancer pain management, it is often poorly done, thus contributing to the burden of unrelieved cancer pain. The aim of this study was to test the impact of an online, complex, evidence-based educational intervention on cancer nurses' pain assessment capabilities and adherence to cancer pain screening and assessment guidelines. Specialist inpatient cancer nurses in five Australian acute care settings participated in an intervention combining an online spaced learning cancer pain assessment module with audit and feedback of pain assessment practices. Participants' self-perceived pain assessment competencies were measured at three time points. Prospective, consecutive chart audits were undertaken to appraise nurses' adherence with pain screening and assessment guidelines. The differences in documented pre-post pain assessment practices were benchmarked and fed back to all sites post intervention. Data were analyzed using inferential statistics. Participants who completed the intervention (n = 44) increased their pain assessment knowledge, assessment tool knowledge, and confidence undertaking a pain assessment (p < .001). The positive changes in nurses' pain assessment capabilities translated into a significant increasing linear trend in the proportion of documented pain assessments in patients' charts at the three time points (χ
Publisher: Elsevier BV
Date: 08-2013
DOI: 10.1016/J.IJNURSTU.2012.11.001
Abstract: This integrative review aimed to appraise the evidence for case conferencing as an intervention to improve palliative care outcomes for older people living with advanced dementia in nursing homes. An integrative review of English language citations from CINHAL, MEDLINE, PSYCHINFO and CareSearch using a palliative care filter was undertaken. Two reviewers screened 238 titles to find 77 relevant articles which were reviewed in detail to identify nine studies that addressed the specific review questions. The analysis process allowed study characteristics, process and outcome measures along with implementation barriers and facilitators to be identified and the results synthesised. The highest level of evidence (Level II) was generated by two randomised controlled case conferencing trials which demonstrated enhance medication management for people with dementia living in a nursing home. Several pre-post test studies suggest that case conferencing enhances palliative symptom management and care outcomes in nursing homes. Qualitative evidence suggests that case conferencing is feasible and worthwhile if the identified barriers are addressed and the facilitators optimised. Case conferencing provides opportunities to improve care palliative care outcomes for older people with dementia by engaging family and all relevant internal and external health providers in prospective care planning. More evidence is needed to determine the efficacy and cost-effectiveness of case conferencing as a strategy for improving care outcomes for older people living with advanced dementia in nursing homes. The evidence generated by this integrative review will be of interest to policy makers, aged care organisations and clinicians alike, especially as services endeavour to meet the increasingly complex care needs of older people admitted to nursing homes with advanced dementia, and the needs of their families.
Publisher: MDPI AG
Date: 08-10-2021
DOI: 10.3390/CURRONCOL28050339
Abstract: Cognitive assessment is a cornerstone of geriatric care. Cognitive impairment has the potential to significantly impact multiple phases of a person’s cancer care experience. Accurately identifying this vulnerability is a challenge for many cancer care clinicians, thus the use of validated cognitive assessment tools are recommended. As international cancer guidelines for older adults recommend Geriatric Assessment (GA) which includes an evaluation of cognition, clinicians need to be familiar with the overall interpretation of the commonly used cognitive assessment tools. This rapid review investigated the cognitive assessment tools that were most frequently recommended by Geriatric Oncology guidelines: Blessed Orientation-Memory-Concentration test (BOMC), Clock Drawing Test (CDT), Mini-Cog, Mini-Mental State Examination (MMSE), Montreal Cognitive Assessment (MoCA), and Short Portable Mental Status Questionnaire (SPMSQ). A detailed appraisal of the strengths and limitations of each tool was conducted, with a focus on practical aspects of implementing cognitive assessment tools into real-world clinical settings. Finally, recommendations on choosing an assessment tool and the additional considerations beyond screening are discussed.
Publisher: SAGE Publications
Date: 05-2022
DOI: 10.1177/02692163221082245
Abstract: Palliative populations are at risk for dehydration which can cause discomfort, distress and cognitive symptoms. Subcutaneous hydration (‘hypodermoclysis’) has been used as an alternative administration route to the more invasive intravenous route, but research is lacking on its net clinical effects (harms and benefits) for palliative populations, particularly in real world settings. To quantify prospectively the net clinical effects of hypodermoclysis in palliative patients with advanced disease who required supplementary fluids. Multisite, multinational consecutive cohort study. Patients receiving hypodermoclysis in an inpatient palliative care setting. Twenty sites contributed data for 99 patients, of which 88 had complete benefits and harms data. The most common primary target symptom for infusion was generalised weakness (18.2%), and the most common non-symptom indication was supplemental hydration (31.8%). Benefits were experienced in 33% of patients in their primary target symptom, and in any symptom in 56.8%. Harms were experienced in 38.7% of patients (42% at Grade 1). Benefits increased with higher performance status, while harms were more frequent in patients with lower performance status (Australia-modified Karnofsky performance status ⩽40). Patients in the terminal phase of their illness experienced the least benefit (15.4% in any indication only) and had more frequent harms (38%). Hypodermoclysis may improve certain symptoms in patients in palliative care but frequency of harms and benefits may differ at certain timepoints in the illness trajectory. Further research is needed to better delineate which patients will derive the most net clinical benefit from hypodermoclysis.
Publisher: Rural and Remote Health
Date: 06-05-2022
DOI: 10.22605/RRH7000
Publisher: Mary Ann Liebert Inc
Date: 06-2015
Abstract: Many people in our communities live with symptoms for years or decades, something of relevance to hospice alliative care clinicians and researchers. The proportion of people in the community at large who have a chronic symptom is likely to approximate the proportion of people referred to hospice alliative care services with that same chronic symptom that pre-dates their life-limiting illness. Such patients may have different responsiveness to, and expectations from, symptomatic therapies, thus requiring more advanced approaches to symptom control. For researchers evaluating the impact of hospice alliative care services, failing to account for people with long-term refractory symptoms pre-dating their life-limiting illness may systematically underestimate services' benefits. Observational symptom prevalence studies reported in hospice alliative care to date have not accounted for people with long-term refractory symptoms, potentially systematically overestimating symptoms attributed to life-limiting illnesses. Cross-sectional community prevalence rates of key chronic refractory symptoms largely unrelated to their life-limiting illness reflect the likely prevalence on referral to hospice alliative care: fatigue (up to 35%) pain (12%-31%) pain with neuropathic characteristics (9%) constipation (2%-29%) dyspnea (4%-9%) cognitive impairment (>10% of people >65 years old >30% of people >85 years old) anxiety (4%) and depression (lifetime incidence 2%-15% one year prevalence 3%). Prospective research is needed to establish (1) the prevalence and severity of chronic symptoms that pre-date the diagnosis of a life-limiting illness in people referred to hospice alliative care services, comparing this to whole-of-population estimates and (2) whether this group is disproportionately represented in people with refractory symptoms.
Publisher: SAGE Publications
Date: 08-12-2017
Abstract: Despite most expected deaths occurring in hospital, optimal end-of-life care is not available for all in this setting. To gain a richer and deeper understanding of elements of end-of-life care that consumers consider most important within the hospital setting. A meta-synthesis. A systematic search of Academic Search Complete, AMED, CINAHL, MEDLINE, EMBASE, PsycINFO, PubMed, Google, Google Scholar and CareSearch for qualitative studies published between 1990 and April 2015 reporting statements by consumers regarding important elements of end-of-life hospital care. Study quality was appraised by two independent researchers using an established checklist. A three-stage synthesis approach focusing on consumer quotes, rather than primary author themes, was adopted for this review. Of 1922 articles, 16 met the inclusion criteria providing patient and family data for analysis. Synthesis yielded 7 patient and 10 family themes including 6 common themes: (1) expert care, (2) effective communication and shared decision-making, (3) respectful and compassionate care, (4) adequate environment for care, (5) family involvement and (6) financial affairs. Maintenance of sense of self was the additional patient theme, while the four additional family themes were as follows: (1) maintenance of patient safety, (2) preparation for death, (3) care extending to the family after patient death and (4) enabling patient choice at the end of life. Consumer narratives help to provide a clearer direction as to what is important for hospital end-of-life care. Systems are needed to enable optimal end-of-life care, in accordance with consumer priorities, and embedded into routine hospital care.
Publisher: Elsevier BV
Date: 03-2015
DOI: 10.1016/J.COLEGN.2013.11.002
Abstract: Cancer pain remains a major public health concern. Despite effective treatments being available to manage the majority of cancer pain, this debilitating symptom is frequently under treated. As cancer has becomes a chronic disease a range of health professionals, including community nurses in Australia are increasingly caring for people living with cancer related pain. Yet, little is known about community nurses capacity to assess and manage cancer pain in accordance with best available evidence. This study aimed to: identify the barriers and facilitators to adult cancer pain assessment and management as perceived by Australian health professionals identify if cancer pain guidelines are currently used identify barriers and facilitators to guideline use and establish the need for Australian cancer pain guidelines. This article reports on community nurses' perceptions of managing cancer pain in the community setting. A cross-sectional survey was administered online. Invitations were circulated via peak bodies and clinical leaders seeking the views and experiences of health professionals involved in caring for people living with cancer pain. Descriptive statistics were used to summarise the quantitative data, and thematic content analysis were used to describe the qualitative data. Sixty-two community nurses responded to the survey, representing 29% of the total s le. These participants reported high levels of adherence to accepted cancer pain management practices in their workplace, with 71% nominating the Palliative Care Therapeutic Guideline V.3 as being most frequently used to manage community patients' cancer related pain. Key barriers to effective cancer pain management in the community were: difficulties accessing non-pharmacological interventions (89%), lack of coordination by multiple providers (89%), and impact of distance on ability to access pain-related services for patients (86%). A range of system, health professional and consumer barriers limit access to best available treatment in the community setting for people with cancer pain. A clinical pathway that gives step-by-step guidance on evidence-based practice along with an evaluation framework may be the best way of enabling community nurses to ensure their patients with cancer related pain have access to best available care.
Publisher: Elsevier BV
Date: 03-2018
Publisher: AACN Publishing
Date: 11-2020
DOI: 10.4037/AJCC2020561
Abstract: Critical care nurses caring for patients with a tracheostomy are at high risk because of the predilection of SARS-CoV-2 for respiratory and mucosal surfaces. This review identifies patient-centered practices that ensure safety and reduce risk of infection transmission to health care workers during the coronavirus disease 2019 (COVID-19) pandemic. Consensus statements, guidelines, institutional recommendations, and scientific literature on COVID-19 and previous outbreaks were reviewed. A global interdisciplinary team analyzed and prioritized findings via electronic communications and video conferences to develop consensus recommendations. Aerosol-generating procedures are commonly performed by nurses and other health care workers, most notably during suctioning, tracheostomy tube changes, and stoma care. Patient repositioning, readjusting circuits, administering nebulized medications, and patient transport also present risks. Standard personal protective equipment includes an N95/FFP3 mask with or without surgical masks, gloves, goggles, and gown when performing aerosol-generating procedures for patients with known or suspected COVID-19. Viral testing of bronchial aspirate via tracheostomy may inform care providers when determining the protective equipment required. The need for protocols to reduce risk of transmission of infection to nurses and other health care workers is evident. Critical care nurses and multidisciplinary teams often care for patients with a tracheostomy who are known or suspected to have COVID-19. Appropriate care of these patients relies on safeguarding the health care team. The practices described in this review may greatly reduce risk of infectious transmission.
Publisher: Maad Rayan Publishing Company
Date: 2017
Publisher: Wiley
Date: 30-08-2019
DOI: 10.1002/PON.5200
Abstract: To compare physical and mental health status between cancer carers versus non-carers in a population-based s le and explore sociodemographic and caring characteristics associated with poor carer health status. The South Australian Health Omnibus is a population-based cross-sectional survey. Carer status was self-defined by participants as having cared for someone with cancer in the last 5 years. Health status was considered poor if it was 0.5 standard deviation lower than Australian norms on the Medical Outcomes Study 12-Item Short-Form (SF-12) physical and mental component summary scores (PCS and MCS). Regression analyses compared mean PCS/MCS between carers versus non-carers, controlling for sociodemographic variables, and explored associations between poor health status and caring and support among carers. The weighted s le included 2962 people, of whom 374 (12.6%) were cancer carers and 1993 (67.3%) non-carers. Carers had significantly worse PCS/MCS, controlling for sociodemographic variables, but did not differ significantly regarding proportions with poor health status. Carer characteristics associated with poor PCS and MCS included socio-economic indicators and involvement in medication management. Assisting with household tasks was protective. This population-based study followed those previous ones in finding cancer carers to have poorer mean health status than non-carers. However, differences were less pronounced than previously reported, likely because of the s le being drawn from a general rather than cancer service population and including past as well as current carers, as well as all cancer types and stages. Future longitudinal research is needed to identify factors that predict recovery post caring.
Publisher: AMPCo
Date: 10-2016
DOI: 10.5694/MJA16.00618
Publisher: Wiley
Date: 21-03-2015
DOI: 10.1111/JOCN.12704
Publisher: Elsevier BV
Date: 07-2008
DOI: 10.1016/J.JPAINSYMMAN.2007.08.017
Abstract: Twenty-four hour access is accepted as a gold standard for palliative care service delivery, yet minimal data exist to justify the cost of this initiative to health care planners and policy makers. Further, there is scant information concerning optimal and efficient methods for delivering after-hours palliative care advice and support, particularly in regional and rural settings. This article reports on an evaluation of a local after-hours telephone support service in regional Australia. A centralized after-hours telephone support service was provided by generalist nurses at a Multipurpose Service in a rural community. A mixed-method evaluation, including semistructured interviews, was undertaken after 20 months of operation. During the period March 31, 2005 until November 15, 2006, 357 patients were registered as part of the Mid North Coast Rural Palliative Care Program. Ten percent of patients or their caregivers accessed the After-Hours Telephone Support Service, representing 55 occasions of service. The most common reason for contacting the service was for reassurance surrounding medication usage, symptom management, and anxiety. This experience demonstrates proof of concept that acceptable palliative care advice can be provided by generalist nurses in a cost-efficient manner. Common patterns emerged in utilization that can assist in service planning and staffing formulae. There is also a need to investigate mechanisms of interfacing with larger scale call centers, to explore the differences within generic and disease-specific approaches, and assess the appropriateness of after-hours telephone support with different cultural groups.
Publisher: SAGE Publications
Date: 08-08-2017
Abstract: Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment. We compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age. The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care. Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years. Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to ‘move on’ with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to ‘move on’. Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.
Publisher: Mary Ann Liebert Inc
Date: 10-2020
Publisher: Springer Science and Business Media LLC
Date: 05-09-2019
DOI: 10.1007/S11136-018-1987-0
Abstract: Assessing health-related quality of life (HRQOL) in people with advanced dementia is challenging but important for informed decision-making. Proxy measurement of this construct is difficult and is often rated lower than self-report. Accurate proxy rating of quality of life in dementia is related to identification of concepts important to the person themselves, as well as the sensitivity of the measures used. The main aim of this study was to compare the performance of two instruments-QUALID and EQ-5D-5L-on measuring HRQOL in people with advanced dementia. In a sub-study nested within a cluster-RCT we collected proxy(nurse)-completed EQ-5D-5L and QUALID measures at baseline, 3, 6, 9 and 12 months' follow-up for people with advanced dementia, residing in 20 nursing homes across Australia. Spearman's rank correlations, partial correlations and linear regressions were used to assess the relationship between the HRQOL instrument scores and their changes over time. The mean weight from 284 people for the EQ-5D-5L and QUALID at baseline were 0.004 (95% CI - 0.026, 0.033) and 24.98 (95% CI 24.13, 25.82), respectively. At 12 months' follow-up, 115 participants remained alive. EQ-5D-5L weights and QUALID scores at baseline and at follow-up were moderately correlated (r = - 0.437 p < 0.001 at 12 months). Changes within QUALID and EQ-5D-5L across the same follow-up periods were also correlated (r = - 0.266 p = 0.005). The regression analyses support these findings. Whilst these quality of life instruments demonstrated moderate correlation, the EQ-5D-5L does not appear to capture all aspects of quality of life that are relevant to people with advanced dementia and we cannot recommend the use of this instrument for use within this population. The QUALID appears to be a more suitable instrument for measuring HRQOL in people with severe dementia, but is not preference-based, which limits its application in economic evaluations of dementia care.
Publisher: Springer Science and Business Media LLC
Date: 26-08-2016
Publisher: Elsevier BV
Date: 07-2020
Publisher: BMJ
Date: 02-2020
DOI: 10.1136/BMJOPEN-2019-034363
Abstract: To explore the perspectives of general practitioners (GPs) concerning the risk of opioid misuse in people with cancer and pain and related clinical considerations. A qualitative approach using semistructured telephone interviews. Analysis used an integrative approach. Primary care. Australian GPs with experience of prescribing opioids for people with cancer and pain. Twenty-two GPs participated, and three themes emerged. Theme 1 ( Misuse is not the main problem ) contextualised misuse as a relatively minor concern compared with pain control and toxicity, and highlighted underlying systemic factors, including limitations in continuity of care and doctor expertise. Theme 2 ( ‘A different mindset’ for cancer pain ) captured participants’ relative comfort in prescribing opioids for pain in cancer versus non-cancer contexts, and acknowledgement that compassion and greater perceived community acceptance were driving factors, in addition to scientific support for mechanisms and clinical efficacy. Participant attitudes towards prescribing for people with cancer versus non-cancer pain differed most when cancer was in the palliative phase, when they were unconcerned by misuse. Participants were equivocal about the risk–benefit ratio of long-term opioid therapy in the chronic phase of cancer, and were reluctant to prescribe for disease-free survivors. Theme 3 ( ‘The question is always, ‘how lazy have you been?’ ) captured participants’ acknowledgement that they sometimes prescribed opioids for cancer pain as a default, easier option compared with more holistic pain management. Findings highlight the role of specific clinical considerations in distinguishing risk of opioid misuse in the cancer versus non-cancer population, rather than diagnosis per se. Further efforts are needed to ensure continuity of care where opioid prescribing is shared. Greater evidence is needed to guide opioid prescribing in disease-free survivors and the chronic phase of cancer, especially in the context of new treatments for metastatic disease.
Publisher: Wiley
Date: 12-10-2021
DOI: 10.1002/PDS.5081
Publisher: SAGE Publications
Date: 19-08-2017
Abstract: Structured family meeting procedures and guidelines suggest that these forums enhance family–patient–team communication in the palliative care inpatient setting. However, the vulnerability of palliative patients and the resources required to implement family meetings in accordance with recommended guidelines make better understanding about the effectiveness of this type of intervention an important priority. This systematic review examines the evidence supporting family meetings as a strategy to address the needs of palliative patients and their families. The review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. Six medical and psychosocial databases and “CareSearch,” a palliative care–specific database, were used to identify studies reporting empirical data, published in English in peer-reviewed journals from 1980 to March 2015. Book chapters, expert opinion, and gray literature were excluded. The Cochrane Collaboration Tool assessed risk of bias. Of the 5051 articles identified, 13 met the inclusion criteria: 10 quantitative and 3 qualitative studies. There was low-level evidence to support family meetings. Only two quantitative pre- and post-studies used a validated palliative care family outcome measure with both studies reporting significant results post-family meetings. Four other quantitative studies reported significant results using non-validated measures. Despite the existence of consensus-based family meeting guidelines, there is a paucity of evidence to support family meetings in the inpatient palliative care setting. Further research using more robust designs, validated outcome measures, and an economic analysis are required to build the family meeting evidence before they are routinely adopted into clinical practice.
Publisher: Springer International Publishing
Date: 2018
Publisher: Elsevier BV
Date: 08-2022
Publisher: Oxford University Press
Date: 04-2015
DOI: 10.1093/MED/9780199656097.003.0163
Abstract: Palliative care in the older person occurs in the context of chronic disease and multimorbidity. Coexisting conditions include musculoskeletal, psychiatric, cognitive, and chronic pain-related problems, each associated with substantive symptomatology and disability. Most crucial is to avoid management within disease ‘silos’ and the risks associated with polypharmacy, which both contribute to adverse outcomes. The complexity of older people’s care demands the formation of a collaborative partnership between primary care, geriatric, and palliative care services, together with other health-care providers in accordance with need. The caregiver of the older person warrants specific mention, often an older spouse with their own medical problems or an adult child juggling other life and work commitments. Planning for care in advance is crucial to avoid decisions being made in crisis, and is particularly crucial if cognitive decline is predicted. Physiological changes, and the frequency of falls, frailty, depression, and delirium are important when planning care and prescribing.
Publisher: Elsevier BV
Date: 07-2022
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 20-03-2020
DOI: 10.1097/J.PAIN.0000000000001876
Abstract: No large-cohort studies that examine potential racial effects on placebo hypoalgesic effects exist. To fill this void, we studied placebo effects in healthy and chronic pain participants self-identified as either African American/black (AA/black) or white. We enrolled 372 study participants, 186 with a diagnosis of temporomandibular disorder (TMD) and 186 race-, sex-, and age-matched healthy participants to participate in a placebo experiment. Using a well-established paradigm of classical conditioning with verbal suggestions, each in idual pain sensitivity was measured to calibrate the temperatures for high- and low-pain stimuli in the conditioning protocol. These 2 temperatures were then paired with a red and green screen, respectively, and participants were told that the analgesic intervention would activate during the green screens to reduce pain. Participants then rated the painfulness of each stimulus on a visual analog scale ranging from 0 to 100. Racial influences were tested on conditioning strength, reinforced expectations, and placebo hypoalgesia. We found that white participants reported greater conditioning effects, reinforced relief expectations, and placebo effects when compared with their AA/black counterparts. Racial effects on placebo were observed in TMD, although negligible, short-lasting, and mediated by conditioning strength. Secondary analyses on the effect of experimenter-participant race and sex concordance indicated that same experimenter-participant race induced greater placebo hypoalgesia in TMDs while different sex induced greater placebo hypoalgesia in healthy participants. This is the first and largest study to analyze racial effects on placebo hypoalgesia and has implications for both clinical research and treatment outcomes.
Publisher: Mark Allen Group
Date: 02-09-2019
Publisher: CSIRO Publishing
Date: 08-02-2022
DOI: 10.1071/PY21081
Abstract: Primary care settings are ideal for initiating advance care planning (ACP) conversations and assessing palliative and supportive care needs. However, time constraints and a lack of confidence to sensitively and efficiently initiate such discussions are noted barriers. The Advance Project implemented a national multicomponent training package to support Australian general practice nurses (GPNs) to work with GPs to initiate ACP and palliative care conversations in their practice. This paper reports on semistructured interviews conducted with 20 GPNs to explore barriers and facilitators to implementing the Advance Project model. Participants identified a range of factors that affected implementation, including lack of time, limited support from colleagues, lack of knowledge about systems and funding processes in general practice and a need for better alignment of the Advance Project resources and practices with general practice information management platforms. Barriers related to professional roles, particularly the lack of clarity and/or limitations in the scope of practice of GPNs, highlighted the importance of defining and supporting the roles that different primary health practice staff could play to support implementation of the model. The findings underline the need for complementary training in the Advance Project model for GPs and practice managers to enable a team-based approach to implementation.
Publisher: Elsevier BV
Date: 05-2011
DOI: 10.1016/J.JPAINSYMMAN.2010.07.020
Abstract: Over the past decade, there has been widespread adoption of end-of-life care pathways as a tool to better manage care of the dying in a variety of care settings. The adoption of various end-of-life care pathways has occurred despite lack of robust evidence for their use. This integrative review identified published studies evaluating the impact of an end-of-life care pathway in the acute and hospice care setting from January 1996 to April 2010. A search of the electronic databases Scopus and Cumulative Index of Nursing and Allied Health Literature as well as Medline and the World Wide Web were undertaken. This search used Medical Subject Headings key words including "end-of-life care," "dying," "palliative care," "pathways," "acute care," and "evaluation." Articles were reviewed by two authors using a critical appraisal tool. The search revealed 638 articles. Of these, 26 articles met the inclusion criteria for this integrative review. No randomized controlled trials were reported. The majority of these articles reported baseline and post implementation pathway chart audit data, whereas a smaller number were local, national, or international benchmarking studies. Most of the studies emerged from the United Kingdom, with a smaller number from the United States, The Netherlands, and Australia. Existing data demonstrate the utility of the end-of-life pathway in improving care of the dying. The absence of randomized controlled trial data, however, precludes definitive recommendations and underscores the importance of ongoing research.
Publisher: SAGE Publications
Date: 09-09-2012
Abstract: Delirium has a significant impact on nursing practice from diagnosis and management, with under-detection and variable management of delirium being international problems. This study aimed to explore nurses’ assessment and management of delirium when caring for people with cancer, the elderly or older people requiring psychiatric care in the inpatient setting. Participants in this qualitative study were nurses working in Australian public hospital inpatient dedicated units in palliative care, aged care (geriatrics), aged care (geriatric) psychiatry and oncology. Semi-structured interviews were used to explore nurses’ views about specific areas of delirium assessment and management. Purposive s ling was used and interviews conducted until thematic saturation reached. A thematic content analysis was performed from a grounded theory perspective. A total of 40 participants were included in the study. The analysis revealed four broad analytical themes: (1) superficial recognition and understanding of the operational definition of delirium or recognition of delirium as a syndrome (2) nursing assessment: investigative versus a problem solving approach (3) management: maintaining dignity and minimizing chaos and (4) distress and the effect on others. Nurses have limited knowledge of the features of delirium regardless of their specialty discipline. Delirium was uniformly identified as a highly distressing experience for patients, families and staff alike. The majority of nurses had a superficial understanding of delirium management, and adopted a task-orientated approach aimed at addressing the more noticeable problems. These findings have implications for both education and knowledge translation. Innovative approaches are needed to align health professional behaviours with best evidence delirium care.
Publisher: CSIRO Publishing
Date: 2006
DOI: 10.1071/AH060370
Abstract: Although access to palliative care is a fundamental right for people in Australia and is endorsed by government policy, there is often limited access to specialist palliative care services in regional, rural and remote areas. This article appraises the evidence pertaining to palliative care service delivery to inform a sustainable model of palliative care that meets the needs of a regional population on the mid-north coast of New South Wales. Expert consultation and an eclectic literature review were undertaken to develop a model of palliative care service delivery appropriate to the needs of the target population and resources of the local community. On the basis of this review, a local palliative care system that is based on a population-based approach to service planning and delivery, with formalised integrated network agreements and role delineation between specialist and generalist providers, has the greatest potential to meet the palliative care needs of this regional coastal community.
Publisher: CSIRO Publishing
Date: 2014
DOI: 10.1071/AH13174
Abstract: The Australian Commission for Quality and Safety in Health Care (ACQSHC) has articulated 10 clinical standards with the aim of improving the consistency of quality healthcare delivery. Currently, the majority of Australians die in acute hospitals. But despite this, no agreed standard of care exists to define the minimum standard of care that people should accept in the final hours to days of life. As a result, there is limited capacity to conduct audits that focus on the gap between current care and recommended care. There is, however, accumulating evidence in the end of life literature to define which aspects of care are likely to be considered most important to those people facing imminent death. These themes offer standards against which to conduct audits. This is very apt given the national recommendation that healthcare should be delivered in the context of considering people’s wishes while always treating people with dignity and respect. This work describes a gap analysis undertaken to explore if issues defined as important by people facing imminent death would have been addressed by usual care of the dying in general hospital wards. The specific issues examined included the documentation that was available to define that this person was likely to die soon and how engaged the person dying seemed to be in discussions, how the person was monitored to ensure distressing symptoms were addressed when necessary and what investigations were considered necessary after the time the person was identified as dying. Although retrospective, the review highlights that usual care would not meet people’s wishes, suggesting that care of the dying would not meet the ACQSHC standard entitled ‘Partnering with consumers’. An alternative model is needed. What is known about the topic? The majority of Australians die in acute hospitals. Despite this, there is no agreed Australian evidence-based, clinical standard to define best practice as to what constitutes quality care for these people. What does this paper add? This paper explores whether particular specific patient-centred needs defined in the end of life literature would have been meet by usual care delivered to people dying in general medical and surgical wards. What are the implications for practitioners? Although many Australians would prefer a home death, the majority of deaths still occur in hospital. In this context, this work articulates that there is a need to consider the wishes and needs of patients when considering care at the end of life in line with Australian standards. However, this is only one aspect of care and further work is needed to consider other aspects of care including the quality of prescribing for dying people.
Publisher: Elsevier BV
Date: 10-2016
DOI: 10.1016/J.NEDT.2016.08.010
Abstract: To optimise the career development in early career academic nurses by providing an overview of the attributes necessary for success. Evidence of early prospective career planning is necessary to optimise success in the tertiary sector. This is particularly important for nurse academics given the profession's later entry into academia, the ageing nursing workforce and the continuing global shortage of nurses. A qualitative systematic review. Academic Search Complete, CINAHL, Medline, ERIC, Professional Development Collection and Google Scholar databases were searched resulting in the inclusion of nine qualitative nurse-only focussed studies published between 2004 and 2014. The studies were critically appraised and the data thematically analysed. Three abilities were identified as important to the early career academic nurse: a willingness to adapt to change, an intention to pursue support and embodying resilience. These abilities give rise to attributes that are recommended as key to successful academic career development for those employed on a continuing academic basis. The capacity to rely on one's own capabilities is becoming seen as increasingly important. It is proposed that recognition of these attributes, their skilful application and monitoring outlined in the review are recommended for a successful career in academia.
Publisher: Oxford University Press (OUP)
Date: 10-09-2019
DOI: 10.1093/PM/PNZ218
Abstract: Chronic arthritic pain is one of the major causes of physical suffering and disability among older people. Primary care and allied health clinicians use various approaches to help their older clients better manage their arthritic pain. The growing uptake of technology among older people offers the potential for clinicians to integrate an arthritic pain app into their patients’ self-management plans. This study explored the perspectives of Australian primary care and allied health clinicians regarding the use of pain self-management apps to help their older patients/clients better manage their arthritic pain. Qualitative design using a semistructured interview approach. Interviews were conducted via telephone with primary and allied health clinicians (N = 17) across Australia. The overarching theme underlying participants’ views on integration of apps into older people’s pain self-management strategy was that this approach is an idealistic but uniquely challenging endeavor. Four subthemes emerged, namely: 1) self-management apps are a potentially useful tool but require careful consideration 2) clinicians’ involvement is crucial yet potentially onerous 3) no single app is right for every older person with arthritic pain and 4) patient data access is beneficial, but caution is needed for real-time data access. The predominant clinician perspective of integrating apps into their older patients/clients’ pain self-management strategies was that this approach is an idealistic but uniquely challenging endeavor. Apps were seen as having potential to support various aspects of patients’ self-management behaviors however, there were notable concerns with regards to the challenges inherent in this approach for both clinicians and older users (patients/clients).
Publisher: Mary Ann Liebert Inc
Date: 05-2017
Abstract: The aim of this work was to investigate whether variables identified as likely to impact the experience of constipation in other clinical settings similarly affected the experiences of constipated palliative care patients. The majority of palliative care patients with cancer are likely to be bothered by constipation symptoms at some point in their disease trajectory. Despite this, it remains unclear as to which factors predict more severe problems. This study was conducted in a s le of 94 constipated palliative care patients who were asked to voluntarily complete a series of questions regarding their demographic and other characteristics, including whether they had chronic constipation symptoms, that is, constipation symptoms for 12 months. Other variables included age, body mass index, sex, performance status, and regular opioids and their doses. At the same time, they were asked to complete the Patient Assessment of Constipation Symptoms (PAC-SYM) and Patient Assessment of Constipation Quality of Life (PAC-QOL) questionnaires. Descriptive statistics summarized baseline data. Unadjusted associations between the selected variables on PAC-SYM were examined by using bi-variate analyses. Significant variables identified on bi-variate analyses were included in a multivariate analysis. The final results identified that only the chronicity of constipation symptoms predicted more severe symptoms. This relationship persisted when this single variable was retained in the final model, illustrating that PAC-SYM scores are 0.41 higher in patients with chronic constipation compared with those without it (p = 0.02). In contrast, regular opioid use was not identified as a significant factor (p = 0.56). This study suggests that the factor most likely to predict worse constipation symptoms was the duration that people had experienced problems. Further, those who perceived their constipation symptoms to be more severe had a poorer quality of life. More work is required to better define constipation risk factors and ways to best modify a patient's experiences.
Publisher: SAGE Publications
Date: 03-2010
DOI: 10.3109/00048670903487225
Abstract: Objective: Residential mother-infant intervention programmes for unsettled infant behaviour have been shown to be associated with positive child and maternal outcomes. Despite evidence of elevated rates of maternal psychopathology among residential unit populations, little is known about whether psychological disorders interfere with the effectiveness of such interventions. Method: Two cohorts (n = 104 and 147, respectively) were recruited from a residential mother-infant intervention programme for unsettled infant behaviour. In study 1, mothers completed self-report questionnaires measuring depression, anxiety and parenting stress at three time points (admission, 1 month after discharge and 3 months after discharge). In study 2, mothers were interviewed using a structured clinical interview for depressive and anxiety disorders. In both studies, nurses recorded infant behaviours over the duration of the 5 day admission using 24 h behaviour charts. Results: Study 1 showed the intervention to be associated with significant improvements in child behaviours and in levels of maternal depression, anxiety and parenting stress. These improvements were evident for women who scored above the Edinburgh Postnatal Depression Scale threshold for major depression during the admission, as well as for women in the normal range. Study 2 confirmed that the intervention was associated with significant improvements in infant behaviours. Infants of mothers with a depressive or anxiety disorder were less unsettled on admission, but improvements over the course of the admission were comparable for infants of women who had, or had not, experienced an anxiety or depressive disorder during the admission. Conclusions: These results show positive infant and maternal outcomes associated with a residential mother-infant intervention for unsettled infant behaviour, regardless of the women's psychiatric status on admission. This suggests that women with depression or anxiety disorders who also report unsettled infant behaviour, will benefit from referral to residential programmes.
Publisher: Wiley
Date: 08-12-2018
DOI: 10.1111/DME.13547
Abstract: To identify family behaviours that adults with Type 2 diabetes' perceive as having an impact on their diabetes self-management. Research suggests that adults with Type 2 diabetes perceive that family members have an important impact on their self-management however, it is unclear which family behaviours are perceived to influence self-management practices. This meta-synthesis identified and synthesized qualitative studies from the databases EMBASE, Medline and CINAHL published between the year 2000 and October 2016. Studies were eligible if they provided direct quotations from adults with Type 2 diabetes, describing the influence of families on their self-management. This meta-synthesis adheres to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. Of the 2606 studies screened, 40 were included. This meta-synthesis identified that adults with Type 2 diabetes perceive family behaviours to be either: 1) facilitators of diabetes self-management 2) barriers to diabetes self-management or 3) equivocal behaviours with the potential to both support and/or impede diabetes self-management. Seven sub-themes were identified within these themes, including: four facilitator sub-themes ('positive care partnerships' 'family watchfulness' 'families as extrinsic motivator' and 'independence from family') two barrier sub-themes ('obstructive behaviours' and 'limited capacity for family support') and one equivocal behaviours subtheme ('regular reminders and/or nagging'). While most family behaviours are unambiguously perceived by adults with Type 2 diabetes to act as facilitators of or barriers to self-management, some behaviours were perceived as being neither clear facilitators nor barriers these were termed 'equivocal behaviours'. If the concept of 'equivocal behaviours' is confirmed, it may be possible to encourage the adult living with Type 2 diabetes to reframe these behaviours so that they are perceived as enabling their diabetes self-management.
Publisher: Mark Allen Group
Date: 02-02-2018
Publisher: Springer Science and Business Media LLC
Date: 26-03-2014
Publisher: Springer Science and Business Media LLC
Date: 23-01-2021
DOI: 10.1186/S12904-021-00715-4
Abstract: A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families (‘carers’). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease. A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults ( 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum 2) self-management domains (PRISMS taxonomy) 3) basic information disclosure (Silberg criteria) 4) independent quality verification (HonCode) 5) reliability of disease and treatment information (DISCERN Sections 1 and 2) and readability (Flesch-Kincaid reading grade). A total of 119 online resources were identified, most originating in England ( n = 49) Australia ( n = 27) or the USA ( n = 27). The majority of resources related to active treatment ( n = 76), without addressing recurrence ( n = 3), survivorship ( n = 1) or palliative care needs ( n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth ( n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified ( n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources. More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty recurrence and transition to palliative care. Developing online resources that don’t require a high level of literacy and/or cognition are also required.
Publisher: SAGE Publications
Date: 02-2020
Publisher: Springer Science and Business Media LLC
Date: 27-05-2011
DOI: 10.1007/S00520-011-1176-Y
Abstract: The purpose of this study is to review the literature examining how the beliefs and behaviours of physicians and patients influence clinical communication, doctor-patient interaction and treatment decisions for lung cancer treatment. Literature was obtained via electronic database searches and hand searching of journals from 1990 to 2011. Wide variability in perceptions of the value of chemotherapy in lung cancer is present among both physicians and patients. There is a mismatch in the degree patients and physicians weigh survival, such that patients value survival benefits highly whilst physicians strongly emphasize toxicity and associated symptoms. This lack of congruence between patients and clinicians is influenced by a range of factors and has implications for treatment decisions, long-term survival and quality of life in people affected by lung cancer. The ergence of treatment priorities indicates a need for improved communication strategies addressing the needs and concerns of both patients and clinicians. Patients should understand the benefits and risks of treatment options, while clinicians can gain a greater awareness of factors influencing patients' decisions on treatments. Reflecting these perspectives and patient preferences for lung cancer treatment in clinical guidelines may improve clinician awareness.
Publisher: IWA Publishing
Date: 05-12-2014
DOI: 10.2166/WH.2014.215
Abstract: In this study, we determined the frequency of antibiotic resistance genes (ARGs) in the Upper Mississippi River using a high-throughput, functional, metagenomic screening procedure. Fosmid libraries containing ∼10,000 clones were screened for resistance to icillin, cephalothin, kanamycin, and tetracycline. We hypothesized that nutrient concentrations, land cover type, and taxonomic community composition may select for ARGs. Resistance to icillin, cephalothin, and kanamycin was low (& .00%), and no resistance to tetracycline was detected. Ammonium and total dissolved solids (TDS) concentrations were correlated with kanamycin and cephalothin resistances (r = 0.617 and −0.449, P = 0.002 and 0.036, respectively). Cephalothin resistance was also positively correlated with the percentage of forested land cover (r = 0.444, P = 0.039). Only the candidate ision OD1, among 35 phyla identified, was correlated with icillin resistance (r = 0.456, P = 0.033), suggesting that minority members of the community may be responsible for dissemination of ARGs in this ecosystem. Results of this study suggest that ammonium and TDS may be involved in a complex selection process for ARGs. Furthermore, we suggest that minority species, potentially contributed in low numbers from sediment and biofilm reservoirs, may be the primary carriers of ARGs in this riverine system.
Publisher: JMIR Publications Inc.
Date: 08-08-2016
DOI: 10.2196/RESPROT.5547
Publisher: Elsevier BV
Date: 05-2012
DOI: 10.1016/J.NEDT.2011.05.005
Abstract: To review published studies evaluating the impact of continuing professional development (CPD) programmes on rural nurses palliative care capabilities in order to inform the development of targeted learning activities for this population. An integrative review. Searches of key electronic databases and the World Wide Web was undertaken using key words, followed by hand searching for relevant articles. All studies were reviewed by two authors using a critical appraisal tool and level of evidence hierarchy. The search strategies generated 74 articles, with 10 studies meeting the inclusion criteria. All of these studies evaluated palliative care CPD programmes involving rural nurses which focused on increasing palliative care capabilities. The evidence generated by this review was limited by the absence of randomised controlled trials. A level III-1 study, with a small s le size provided the highest level of evidence, but the lack of control negated the investigators' capacity to confirm causality. Few studies measured the impact of CPD on the quality of care or utilised novel technology to address the tyranny of distance. Despite, these limitations valuable insights into the barriers and facilitators to engaging rural nurses in palliative care learning opportunities were identified. Evidence that CPD impacts positively on patient and families outcomes is necessary to sustain an on-going investment in learning activities. In order to optimise the opportunities afforded by emerging web-based technology rural nurses' need to develop and maintain their computer competencies. Further investigation of the impact of specialist clinical placements on rural nurses' palliative care capabilities is also indicated.
Publisher: Hindawi Limited
Date: 2012
DOI: 10.1155/2012/279431
Abstract: Aims and Objectives . This paper provides an overview of the applicability of the PRECEDE-PROCEED Model to the development of targeted nursing led chronic illness interventions. Background . Changing health care practice is a complex and dynamic process that requires consideration of social, political, economic, and organisational factors. An understanding of the characteristics of the target population, health professionals, and organizations plus identification of the determinants for change are also required. Synthesizing this data to guide the development of an effective intervention is a challenging process. The PRECEDE-PROCEED Model has been used in global health care settings to guide the identification, planning, implementation, and evaluation of various health improvement initiatives. Design . Using a reflective case study approach, this paper examines the applicability of the PRECEDE-PROCEED Model to the development of targeted chronic care improvement interventions for two distinct Australian populations: a rapidly expanding and aging rural population with unmet palliative care needs and a disadvantaged urban community at higher risk of cardiovascular disease. Results . The PRECEDE-PROCEED Model approach demonstrated utility across erse health settings in a systematic planning process. In environments characterized by increasing health care needs, limited resources, and growing community expectations, adopting planning tools such as PRECEDE-PROCEED Model at a local level can facilitate the development of the most effective interventions. Relevance to Clinical Practice . The PRECEDE-PROCEED Model is a strong theoretical model that guides the development of realistic nursing led interventions with the best chance of being successful in existing health care environments.
Publisher: Elsevier BV
Date: 07-2010
DOI: 10.1016/J.COLEGN.2010.04.009
Abstract: The majority of society's deaths occur in a health care environment. Regardless of whether a death occurs in acute care, hospice, residential aged care or community settings, nurses are the health professionals that will spend the largest proportion of time with the patient who has a terminal condition and their families. As few nurses have specialist palliative care qualifications it is essential that nursing education prepares graduates to achieve the core capabilities required for the delivery of best evidenced based palliative care. This reality makes the integration of palliative care content into the undergraduate nursing curricula an important priority. This paper aims to describe how palliative care content has been embedded throughout the three-year University of Notre Dame Australia, Sydney (UNDA) undergraduate nursing degree. The School of Nursing at the University of Notre Dame Australia, Sydney c us is committed to ensuring that students graduate with the capabilities to deliver appropriate care to people with requiring end-of-life care. The establishment of this new School of Nursing coincided with the release of the 'The Palliative Care Curricula for Undergraduates Program' (PCC4U) learning resources. These resources have been integrated into relevant units across the three-year nursing curricula. The nursing curriculum has been design to supports the integration of palliative care knowledge into clinical practice. The Palliative Care Curricula for Undergraduates Program Learning resources offer engaging palliative care case studies and scenarios for academics to utilise. Adopting an iterative approach where palliative care content is spiralled across multiple units provides opportunities for undergraduate nursing students to sequentially build and consolidate their palliative care capabilities. Developing a new curricular provided an ideal opportunity to integrate and embed palliative care content into the undergraduate nursing degree. The next stage of the curriculum development is to explore inter-professional palliative care education opportunities. Evaluating the palliative care capabilities of our nursing graduates is also an important consideration. This paper provides practical suggestions for integrating palliative care education into an undergraduate nursing curriculum.
Publisher: Wiley
Date: 07-02-2020
DOI: 10.1111/AJCO.13310
Publisher: Cambridge University Press (CUP)
Date: 21-12-2018
DOI: 10.1017/S1478951517000979
Abstract: The working ages (25–65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families. A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children. Fifteen quantitative and 12 qualitative studies were included. Two-thirds ( n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease. Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.
Publisher: Elsevier BV
Date: 07-2010
DOI: 10.1016/J.COLEGN.2010.04.007
Abstract: Over the past two decades the number of people Living with cancer has increased. Many cancer survivors end up with long term disabilities requiring ongoing care and support. For many people, cancer survival now means Living with a chronic and complex condition. The purpose of this paper is to provide an overview of the long term management issues for cancer survivors and strategies to enhance their care. Cancer survivors require ongoing support in four key areas: prevention surveillance intervention for consequences of cancer and its treatment and coordination between specialist and generalist providers. Cancer survivors experience significant physical and psychological morbidity which makes minimising their burden of disability and distress an important priority. Survivors require ongoing care that is well co-ordinated, focuses on prevention, provides going surveillance whilst minimising and managing the long term effects of treatment and other co-morbidities.
Publisher: Oxford University Press (OUP)
Date: 27-10-2023
Abstract: To compare the frailty prevalence and predictive performance of six frailty instruments in adults with heart failure and determine the feasibility of study methods. Prospective cohort pilot study. Adults aged 18 years or older with a confirmed diagnosis of heart failure in Sydney, New South Wales, Australia. The Frailty Phenotype the Survey of Health, Ageing, and Retirement in Europe Frailty Instrument (SHARE-FI) St Vincent’s Frailty instrument St Vincent’s Frailty instrument plus cognition and mood The Fatigue, Resistance, Ambulation, Illnesses, and Loss of Weight (FRAIL) scale and the Deficit Accumulation Index (DAI) were compared. Multiple logistic regression was used to develop six frailty instrument models to evaluate the association between each frailty instrument and composite all-cause rehospitalization and mortality at 12 months. One hundred and thirty-one patients were included with a mean age of 54 [± 14(SD)]. Frailty prevalence ranged from 33 to 81%. All instruments except one (the FRAIL scale) appeared to signal an increased odds of rehospitalization and/or mortality, yet these results were non-significant. The six frailty instrument models displayed sensitivity between 88–92% and C-statistic values of 0.71–0.73, suggesting satisfactory discrimination. The prevalence of frailty varied across six frailty instruments yet was in the higher range despite a ‘younger’ heart failure cohort. Further research is required to confirm the psychometric properties of these instruments for routine clinical use in an adequately powered and more erse heart failure cohort.
Publisher: Wiley
Date: 06-2007
DOI: 10.1111/J.0889-7204.2007.05743.X
Abstract: Successful treatment of hypertension in patients with type 2 diabetes mellitus increases life expectancy and reduces the risk of many of the complications associated with diabetes, such as heart disease, stroke, and retinopathy. Controlling blood pressure also protects against advancing renal disease, with several recent studies having clearly shown the advantage of angiotensin-converting enzyme inhibitors and angiotensin receptor blockers in slowing the progression of renal disease. Here, the authors review current guidelines for the management of hypertension in patients with type 2 diabetes mellitus and explore ways in which nurse practitioners can improve care for these patients.
Publisher: Elsevier BV
Date: 05-2016
DOI: 10.1016/J.JPAINSYMMAN.2015.11.026
Abstract: The handheld fan is an inexpensive and safe way to provide facial airflow, which may reduce the sensation of chronic refractory breathlessness, a frequently encountered symptom. To test the feasibility of developing an adequately powered, multicenter, multinational randomized controlled trial comparing the efficacy of a handheld fan and exercise advice with advice alone in increasing activity in people with chronic refractory breathlessness from a variety of medical conditions, measuring recruitment rates data quality and potential primary outcome measures. This was a Phase II, multisite, international, parallel, nonblinded, mixed-methods randomized controlled trial. Participants were centrally randomized to fan or control. All received breathlessness self-management/exercise advice and were followed up weekly for four weeks. Participants/carers were invited to participate in a semistructured interview at the study's conclusion. Ninety-seven people were screened, 49 randomized (mean age 68 years 49% men), and 43 completed the study. Site recruitment varied from 0.25 to 3.3/month and screening:randomization from 1.1:1 to 8.5:1. There were few missing data except for the Chronic Obstructive Pulmonary Disease Self-Efficacy Scale (two-thirds of data missing). No harms were observed. Three interview themes included 1) a fan is a helpful self-management strategy, 2) a fan aids recovery, and 3) a symptom control trial was welcome. A definitive, multisite trial to study the use of the handheld fan as part of self-management of chronic refractory breathlessness is feasible. Participants found the fan useful. However, the value of information for changing practice or policy is unlikely to justify the expense of such a trial, given perceived benefits, the minimal costs, and an absence of harms demonstrated in this study.
Publisher: Elsevier BV
Date: 10-2014
DOI: 10.1016/J.IJNURSTU.2014.02.005
Abstract: Delirium is prevalent in palliative care inpatient settings and management is often challenging. Despite nurses' integral patient care role, little is known about palliative care nurses' capacity to recognise, assess and respond to patients' delirium symptoms. To explore the experiences, views and practices of inpatient palliative care nurses in delirium recognition and assessment. 30 nurses from nine Australian specialist palliative care inpatient services. Critical incident technique (CIT) guided a series of semi-structured interviews. Prior to interviews participants were given a vignette of a palliative care inpatient with an unrecognised hypoactive delirium, to prompt their recollection and recounting of a similar clinical incident. Clearly recalled and described incidents were analysed using thematic content analysis. 20 of 30 participants recalled and described 28 relevant delirium incidents. Two themes and six sub-themes provide a general description of participants' experiences, views and practice in delirium recognition and assessment. Participants experience distress related to caring for patients with delirium and express compassion and empathy for delirious patients. Enhancing their delirium knowledge, strengthening collaborative multidisciplinary team relationships and better communication are important supports. Some participants, usually those in advance practice roles, describe more comprehensive assessment capabilities that incorporate clinical expertise with whole person awareness, yet systematic and structured delirium screening and assessment processes and application of the delirium diagnosis criteria are largely missing. Use of ambiguous terminology to describe delirium symptoms contributes to ineffective practice. The findings of this study expands our understanding of how palliative care nurses' capacity to recognise and assess patients' delirium symptoms in the inpatient setting could be strengthened.
Publisher: SAGE Publications
Date: 10-06-2020
Abstract: Chronic breathlessness is a disabling syndrome that profoundly impacts patients’ and caregivers’ lives. Driving is important for most people, including those with advanced disease. Regular, low-dose, sustained-release morphine safely reduces breathlessness, but little is known about its impact on driving. To understand patients’ and caregivers’ (1) perspectives and experiences of driving with chronic breathlessness and (2) perceived impact of regular, low-dose, sustained-release morphine on driving. A qualitative study embedded in a pragmatic, phase III, randomised, placebo-controlled trial of low-dose, sustained-release morphine (⩽32 mg/24 h) for chronic breathlessness. Semi-structured interviews were conducted immediately after participants withdrew or completed the randomised, placebo-controlled trial. Informed by grounded theory, a constant comparative approach to analysis was adopted. Participants were recruited from an outpatients palliative care service in Adelaide, Australia. Participants included patients ( n = 13) with severe breathlessness associated with chronic obstructive pulmonary disease and their caregivers ( n = 9). Participants were interviewed at home. Eleven received morphine 8–32 mg. Three themes emerged: (1) independence (2) breathlessness’ impact on driving and (3) driving while taking regular, low-dose, sustained-release morphine. Driving contributed to a sense of identity and independence. Being able to drive increased the physical and social space available to patients and caregivers, their social engagement and well-being. Patients reported breathlessness at rest may impair driving skills, while the introduction of sustained-release morphine seemed to have no self-reported impact on driving. Investigating this last perception objectively, especially in terms of safety, is the subject of ongoing work.
Publisher: Elsevier BV
Date: 2021
Publisher: Springer Science and Business Media LLC
Date: 22-01-2019
Publisher: Mark Allen Group
Date: 02-05-2019
DOI: 10.12968/IJPN.2019.25.5.212
Abstract: People with an inherited condition who receive palliative care may be missing out on the opportunity to store a DNA s le for future use by their families and offspring. A DNA s le from a family member affected with an inherited condition can help at-risk relatives to access accurate risk assessment and, where relevant, enhanced surveillance and risk-reducing measures. As genetic and genomic testing becomes increasingly important in all aspects of healthcare, health professionals specialising in palliative care will be asked to communicate about family history risk and testing. This article highlights the importance of discussing genetics and genomics issues for people receiving palliative care, their families and the health professionals caring for them.
Publisher: European Respiratory Society (ERS)
Date: 31-12-2015
Publisher: Oxford University Press (OUP)
Date: 25-05-2018
DOI: 10.1093/PM/PNX090
Abstract: To appraise the quality and usability of currently available pain applications that could be used by community-dwelling older adults to self-manage their arthritic pain. A systematic review. Searches were conducted in App Store and Google Play to identify pain self-management apps relevant to arthritic pain management. English language pain management apps providing pain assessment and documentation function and pain management education were considered for inclusion. A quality evaluation audit tool based on the Stanford Arthritis Self-Management Program was developed a priori to evaluate app content quality. The usability of included apps was assessed using an established usability evaluation tool. Out of the 373 apps that were identified, four met the inclusion criteria. The included apps all included a pain assessment and documentation function and instructions on medication use, communication with health professionals, cognitive behavioral therapy-based pain management, and physical exercise. Management of mood, depression, anxiety, and sleep were featured in most apps (N = 3). Three-quarters (N = 3) of the apps fell below the acceptable moderate usability score (≥3), while one app obtained a moderate score (3.2). Few of the currently available pain apps offer a comprehensive pain self-management approach incorporating evidence-based strategies in accordance with the Stanford Arthritis Self-Management Program. The moderate-level usability across the included apps indicates a need to consider the usability needs of the older population in future pain self-management app development endeavors.
Publisher: Elsevier BV
Date: 12-2021
Publisher: Springer Science and Business Media LLC
Date: 04-05-2018
DOI: 10.1007/S00520-018-4231-0
Abstract: This paper reports the findings of a priority setting process, undertaken with cancer and palliative care clinicians, to better understand the characteristics of medication errors with opioids within their services. Participants representing six public hospitals in one Australian state took part in a series of priority setting workshops and, drawing on actual incidents occurring in their services, sought to identify where in the opioid medication process errors were most frequently occurring. Opioid error types and perceived contributing factors were explored, and strategies to reduce revent opioid errors were proposed. The priority setting process provided valuable insights into the types of opioid errors that occur in cancer and palliative care services and the complexity of addressing opioid errors from the clinician's perspective. The findings from this priority setting process will inform future targeted quality improvement initiatives to support safe opioid medication practices in cancer and palliative care services.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 17-08-2020
Publisher: Springer Science and Business Media LLC
Date: 05-09-2023
DOI: 10.1038/S41431-022-01179-7
Abstract: Genetic information can provide clinical benefits to families of palliative patients. However, integration of genetics into mainstream medicine has not focused on palliative populations. We explored the views and experiences of genetic health professionals in addressing genetics with palliative patients, and their families. We conducted an interpretive descriptive qualitative study with genetic counsellors and clinical geneticists using interviews and focus groups. Findings were generated using reflexive thematic analysis. Three themes were identified: (1) Focusing on the benefit to the family, (2) The discomfort of addressing genetics near end-of-life and (3) “It’s always on the back-burner”: Challenges to getting genetics on the palliative care agenda. Participants discussed the familial benefit of genetics in palliative care alongside the challenges when patients are near end-of-life. They perceived genetics as low priority for palliative care due to misunderstandings related to the value of genetic information. Acknowledging the challenges in the palliative care context, genetic health professionals want improved service leadership and awareness of the familial benefits of palliative genetic testing. Strong leadership to support genetic health professionals in addressing these barriers is needed for the benefits of genetic information to be realised.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 20-03-2020
DOI: 10.1200/JCO.18.02235
Abstract: Patient-defined factors that are important at the end of life include being physically independent for as long as possible, good symptom control, and spending quality time with friends and family. Hospice care adds to the quality of care and these patient-centered priorities for people with cancer and their families in the last weeks and days of life. Evidence from large observational studies demonstrate that hospice care can improve outcomes directly and support better and more appropriate health care use for people in the last stages of cancer. Team-based community hospice care has measurable benefits for patients, their family caregivers, and health services. In addition to improved symptom control for patients and a greater likelihood of time spent at home, caregiver outcomes are better when hospice care is accessed: informational needs are better met, and caregivers have an improved ability to move on with life after the patient’s death compared with people who did not have access to these services. Hospice care continues to evolve as its reach expands and the needs of patients continue to broaden. This is reflected in the transition from hospice being based on excellence in nursing to teams with a broad range of health professionals to meet the complex and changing needs of patients and their families. Additional integration of cancer services with hospice care will help to provide more seamless care for patients and supporting family caregivers during their caregiving and after the death of the patient.
Publisher: SAGE Publications
Date: 04-11-2016
Abstract: Opioids are the primary pharmacological treatment for cancer pain and, in the palliative care setting, are routinely used to manage symptoms at the end of life. Opioids are one of the most frequently reported drug classes in medication errors causing patient harm. Despite their widespread use, little is known about the incidence and impact of opioid medication errors in oncology and palliative care settings. To determine the incidence, types and impact of reported opioid medication errors in adult oncology and palliative care patient settings. A systematic review. Five electronic databases and the grey literature were searched from 1980 to August 2014. Empirical studies published in English, reporting data on opioid medication error incidence, types or patient impact, within adult oncology and/or palliative care services, were included. Popay’s narrative synthesis approach was used to analyse data. Five empirical studies were included in this review. Opioid error incidence rate was difficult to ascertain as each study focussed on a single narrow area of error. The predominant error type related to deviation from opioid prescribing guidelines, such as incorrect dosing intervals. None of the included studies reported the degree of patient harm resulting from opioid errors. This review has highlighted the paucity of the literature examining opioid error incidence, types and patient impact in adult oncology and palliative care settings. Defining, identifying and quantifying error reporting practices for these populations should be an essential component of future oncology and palliative care quality and safety initiatives.
Publisher: Informa UK Limited
Date: 06-05-2016
DOI: 10.1080/10376178.2016.1175311
Abstract: Globally, heart failure (HF) is one of the major health issues faced by many older people. It causes significant symptom burden that requires ongoing management. This paper reports on a descriptive-observational study undertaken to: (1) describe the prevalence of pain and analgesic prescription usage in hospitalized older HF patients (2) determine the degree to which these patients are provided with a pain self-management strategy prior to discharge and (3) determine if the patients' pain self-management strategy has been detailed in the discharge summary. A total of 122 older HF patients were included in this study. Results indicated that moderate to severe pain (Numeric Rating Scale score ≥4) is experienced by a substantial number of older people hospitalized with HF. There is little documented evidence that older people are provided with adequate analgesic prescriptions and the instructions required to effectively manage their pain on discharge to the community.
Publisher: Oxford University Press (OUP)
Date: 29-11-2022
Abstract: Internationally there is urgency to implement guidelines supporting integration of palliative care into stroke clinical practice. Despite considerable advances in acute stroke management approximately 20% of all acute stroke patients die within the first 30 days. Palliative care is well established in diseases such as cancer or advanced heart failure, but evidence base interventions of high quality are limited in stroke populations. This systematic review aims to identify and evaluate quantitative studies that describe palliative care interventions and end of life care as reported by patient's post-stroke and their families. A systematic review following PRISMA guidelines was conducted in CINAHL, PubMed, Cochrane, Embase, Ovid, Proquest and Scopus from 1990 - April 2021. The National Heart, Lung and Blood Institute (NHLBI) standardised quality rating tools for quality assessment was used. The protocol was registered in PROSPERO. Seven studies were identified and all used descriptive quantitative designs. There were no interventional studies. Results were synthesised narratively according to the elements of palliative care interventions and end of life care: symptom burden and satisfaction, loss of autonomy and end of life and acknowledging uncertainty. This review highlights the limited empirical evidence that describe palliative care interventions and end of life care as reported by patient's post-stroke and their families. Most of the current evidence focuses on the provision of care during the final days and hours of life, or end-of-life care, with little evidence to guide the integration of palliative care into post-stroke clinical care, especially for patients with an uncertain prognosis. Acute stroke is sudden, unexpected and life-changing, and patients and families would benefit from well-designed targeted interventions to determine strategies that address the erse palliative needs of this patient population. PROSPERO CRD42021254536.
Publisher: European Respiratory Society
Date: 09-2016
Publisher: Informa UK Limited
Date: 14-02-2023
Publisher: Springer Singapore
Date: 2016
Publisher: SAGE Publications
Date: 11-08-2022
DOI: 10.1177/02692163221113163
Abstract: Theory-based and qualitative evaluations in pilot trials of complex clinical interventions help to understand quantitative results, as well as inform the feasibility and design of subsequent effectiveness and implementation trials. To explore patient, family, clinician and volunteer ('stakeholder') perspectives of the feasibility and acceptability of a multicomponent non-pharmacological delirium prevention intervention for adult patients with advanced cancer in four Australian palliative care units that participated in a phase II trial, the 'PRESERVE pilot study'. A trial-embedded qualitative study via semi-structured interviews and directed content analysis using Michie's Behaviour Change Wheel and the Theoretical Domains Framework. Thirty-nine people involved in the trial: nurses ( Participants' perspectives aligned with the 'capability', 'opportunity' and 'motivation' domains of the applied frameworks. Of seven themes, three were around the alignment of the delirium prevention intervention with palliative care (intervention was considered routine care intervention aligned with the compassionate and collaborative culture of palliative care and differing views of palliative care priorities influenced perspectives of the intervention) and four were about study processes more directly related to adherence to the intervention (shared knowledge increased engagement with the intervention impact of the intervention checklist on attention, delivery and documentation of the delirium prevention strategies clinical roles and responsibilities and addressing environmental barriers to delirium prevention). This theory-informed qualitative study identified multiple influences on the delivery and documentation of a pilot multicomponent non-pharmacological delirium prevention intervention in four palliative care units. Findings inform future definitive studies of delirium prevention in palliative care.
Publisher: Elsevier BV
Date: 06-2022
Publisher: American Society of Clinical Oncology (ASCO)
Date: 06-2014
Abstract: Multiple systematic reviews and meta-analyses have identified the effectiveness of patient education in improving cancer pain management. However, the mechanisms by which patient education improves pain outcomes are uncertain, as are the optimal delivery, content, timing, frequency, and duration. This review provides best-bet recommendations based on available evidence to guide service managers and clinicians in developing a patient education program. We used patient-centered care, self-management, coaching, and a behavior change wheel as lenses through which to consider the evidence for elements of patient education most likely to be effective within the context of other strategies for overcoming barriers to cancer pain assessment and management. The evidence suggests that optimal strategies include those that are patient-centered and tailored to in idual needs, are embedded within health professional–patient communication and therapeutic relationships, empower patients to self-manage and coordinate their care, and are routinely integrated into standard cancer care. An approach that integrates patient education with processes and systems to ensure implementation of key standards for pain assessment and management and education of health professionals has been shown to be most effective. Patient education is effective in reducing cancer pain and should be standard practice in all settings. For optimal results, patient education should be integrated with other strategies for implementing evidence-based, person-centered care and overcoming barriers at the levels of patient, provider, and health system.
Publisher: Public Library of Science (PLoS)
Date: 23-04-2015
Publisher: BMJ
Date: 02-2023
DOI: 10.1136/BMJOPEN-2022-066125
Abstract: Many patients experience unrelieved neuropathic cancer-related pain. Most current analgesic therapies have psychoactive side effects, lack efficacy data for this indication and have potential medication-related harms. The local anaesthetic lidocaine (lignocaine) has the potential to help manage neuropathic cancer-related pain when administered as an extended, continuous subcutaneous infusion. Data support lidocaine as a promising, safe agent in this setting, warranting further evaluation in robust, randomised controlled trials. This protocol describes the design of a pilot study to evaluate this intervention and explains the pharmacokinetic, efficacy and adverse effects evidence informing the design. A mixed-methods pilot study will determine the feasibility of an international first, definitive phase III trial to evaluate the efficacy and safety of an extended continuous subcutaneous infusion of lidocaine for neuropathic cancer-related pain. This study will comprise: a phase II double-blind randomised controlled parallel-group pilot of subcutaneous infusion of lidocaine hydrochloride 10% w/v (3000 mg/30 mL) or placebo (sodium chloride 0.9%) over 72 hours for neuropathic cancer-related pain, a pharmacokinetic substudy and a qualitative substudy of patients’ and carers’ experiences. The pilot study will provide important safety data and help inform the methodology of a definitive trial, including testing proposed recruitment strategy, randomisation, outcome measures and patients’ acceptability of the methodology, as well as providing a signal of whether this area should be further investigated. Participant safety is paramount and standardised assessments for adverse effects are built into the trial protocol. Findings will be published in a peer-reviewed journal and presented at conferences. This study will be considered suitable to progress to a phase III study if there is a completion rate where the CI includes 80% and excludes 60%. The protocol and Patient Information and Consent Form have been approved by Sydney Local Health District (Concord) Human Research Ethics Committee 2019/ETH07984 and University of Technology Sydney ETH17-1820. ANZCTR ACTRN12617000747325.
Publisher: Wiley
Date: 18-05-2007
DOI: 10.1111/J.1365-2702.2006.01760.X
Abstract: This integrated literature review seeks to identify the key considerations in conducting focus groups and discusses the specific considerations for focus group research with culturally and linguistically erse groups. The focus group method is a technique of group interview that generates data through the opinions expressed by participants. Focus groups have become an increasingly popular method of data collection in health care research. Although focus groups have been used extensively with Western populations, they are a particularly useful tool for engaging culturally and linguistically erse populations. The success of focus groups in this context is dependent upon the cultural competence of the research team and the research questions. The electronic databases Medline, CINAHL, Embase, Psychlit and the Internet using the Google Scholar search engine were explored using the search terms 'focus group', 'cultural sensitivity', 'transcultural nursing', 'transcultural care', 'cultural ersity' and 'ethnic groups'. Hand searching of reference lists and relevant journals was also undertaken. English language articles were selected for the review if they discussed the following issues: (i) methodological implications of the focus group method (ii) strengths and limitations of the focus group method (iii) recommendations for researchers and (iv) use of the focus group in culturally and linguistically erse groups. Conclusions were drawn from each of the articles and consensus regarding a summary of recommendations was derived from a minimum of two authors. Findings from this review revealed several key issues involving focus group implementation including recruitment, s le size, data collection, data analysis and use within multicultural populations. Strengths and limitations of the focus group method were also identified. Focus groups are a useful tool to expand existing knowledge about service provision and identify consumer needs that will assist in the development of future intervention programmes, particularly within multicultural populations. Careful planning related to methodological and pragmatic issues are critical in deriving effective data and protecting participants. Focus groups can facilitate increased understanding of perspectives of culturally and linguistically erse groups and thereby shape clinical practice to better meet the needs of these groups.
Publisher: Elsevier BV
Date: 11-2009
DOI: 10.1016/J.JAD.2009.02.004
Abstract: The Edinburgh Postnatal Depression Scale (EPDS) was developed as a uni-dimensional measure of depression, however there is evidence that it also measures anxiety. This study examined the factor structure of the EPDS and validity of the identified subscales. 309 women with infants aged up to 12 months completed the EPDS, BDI-II, BAI and the SCID-I. Exploratory factor analysis revealed distinct anxiety and depression factors. Confirmatory factor analyses showed the identified two-factor model to be an adequate fit to the data and superior to a uni-dimensional model. An anxiety subscale score of 4 or more detected the presence of an anxiety disorder with sensitivity of 63%, specificity 70%, positive predictive value of 45% and negative predictive value of 81%. All participants were mothers with unsettled infants, a group that is known to have higher than average rates of depression and anxiety. The factor structure of the EPDS may have unique features in this group and so these results may not be generalizable to general postnatal s les. Also, participants in this study ranged from 1 week to 12 months postpartum and there may be variations in the factor structure of the EPDS over this time. The 7-item depression subscale could be used in place of the total scale to identify women with major depression and the 3-item anxiety subscale could be used to identify women with anxiety disorders (occurring co-morbidly with depression or occurring alone). Future research should seek to replicate these findings in a general postnatal s le and to develop anxiety-specific screening tools for use in the postnatal period.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 28-05-2023
Publisher: Mark Allen Group
Date: 02-04-2016
Publisher: SAGE Publications
Date: 04-01-2018
Abstract: Driving cessation is associated with poor health-related outcomes. People with chronic diseases are often prescribed long-term opioid agonists that have the potential to impair driving. Studies evaluating the impact of opioids on driving-related psychomotor skills report contradictory results likely due to heterogeneous designs, assessment tools and study populations. A better understanding of the effects of regular therapeutic opioid agonists on driving can help to inform the balance between in idual’s independence and community safety. To identify the literature assessing the impact of regular therapeutic opioid agonists on driving-related psychomotor skills for people with chronic pain or chronic breathlessness. Systematic review reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-analysis statement PROSPERO Registration CRD42017055909. Six electronic databases and grey literature were systematically searched up to January, 2017. Inclusion criteria were as follows: (1) empirical studies reporting data on driving simulation, on-the-road driving tasks or driving outcomes (2) people with chronic pain or chronic breathlessness and (3) taking regular therapeutic opioid agonists. Critical appraisal used the National Institutes of Health’s quality assessment tools. From 3809 records screened, three studies matched the inclusion criteria. All reported data on people with chronic non-malignant pain. No significant impact of regular therapeutic opioid agonists on people’s driving-related psychomotor skills was reported. One study reported more intense pain significantly worsened driving performance. This systematic review does not identify impaired simulated driving performance when people take regular therapeutic opioid agonists for symptom control, although more prospective studies are needed.
Publisher: Cambridge University Press (CUP)
Date: 07-12-2022
DOI: 10.1017/S1478951521001851
Abstract: The aim was to identify determinants of nurse spiritual/existential care practices toward end-of-life patients. Nurses can play a significant role in providing spiritual/existential care, but they actually provide this care less frequently than desired by patients. A systematic search was performed for peer-reviewed articles that reported factors that influenced nurses’ spiritual/existential care practices toward adult end-of-life patients. The review identified 42 studies and included the views of 4,712 nurses across a range of hospital and community settings. The most frequently reported factors/domains that influenced nurse practice were patient-related social influence, skills, social rofessional role and identity, intentions and goals, and environmental context and resources. A range of personal, organizational, and patient-related factors influence nurse provision of spiritual/existential care to end-of-life patients. This complete list of factors can be used to gauge a unit's conduciveness to nurse provision of spiritual/existential care and can be used as inputs to nurse competency frameworks.
Publisher: European Respiratory Society
Date: 07-09-2020
Publisher: Elsevier BV
Date: 12-2013
Publisher: Elsevier BV
Date: 11-2016
DOI: 10.1016/J.NEPR.2016.09.007
Abstract: Clinical learning experiences are an essential part of nurse education programs. Numerous approaches to clinical education and student supervision exist. The aim of this integrative review was to explore how studies have compared or contrasted different models of undergraduate nurse clinical education. A search of eight databases was undertaken to identify peer-reviewed literature published between 2006 and 2015. Eighteen studies met the inclusion criteria. A erse range of methodologies and data collection methods were represented, which primarily explored student experiences or perceptions. The main models of undergraduate nurse clinical education identified were: traditional or clinical facilitator model the preceptorship or mentoring model and the collaborative education unit model in addition to several novel alternatives. Various limitations and strengths were identified for each model with no single optimal model evident. Thematic synthesis identified four common elements across the models: the centrality of relationships the need for consistency and continuity the potential for variety of models and the viability/sustainability of the model. The results indicate that effective implementation and key elements within a model may be more important than the overarching concept of any given model. Further research is warranted to achieve an agreed taxonomy and relate model elements to professional competence.
Publisher: Springer Science and Business Media LLC
Date: 21-03-2020
Publisher: SAGE Publications
Date: 09-02-2009
Abstract: Managing the complex care needs of older people is a global concern. General practitioners (GPs) play a pivotal role in aged care, yet little is known about their capacity to provide palliative care in nursing homes. This study aimed to investigate GPs' perceptions and understanding of a palliative approach. A convenience s le of rural GPs ( n = 13) participated in a series of three focus groups undertaken in August, 2005. These focus groups were all audio-taped, transcribed, and analyzed using thematic content analysis. Four key themes emerged: uncertainty about a palliative approach, a need to reorientate providers, the challenges of managing third parties, and making it work and moving forward. These preliminary findings suggest that integrating a palliative approach in aged care requires GPs to have a greater awareness of this paradigm and to be more effectively engaged in multidisciplinary care planning.
Publisher: BMJ
Date: 02-2022
DOI: 10.1136/BMJOPEN-2021-050182
Abstract: Management of neuropathic cancer pain (NCP) refractory to regular opioids remains an important challenge. The efficacy of pregabalin for NCP except chemotherapy-induced peripheral neuropathy (CIPN) has already been confirmed in two randomised controlled trials (RCTs) compared with placebo. Duloxetine offers the potential of analgesia in opioid refractory NCP. However, there are no RCT of duloxetine for the management of opioid-refractory NCP as a first line treatment. Both classes of drugs have the potential to reduce NCP, but there has been no head-to-head comparison for the efficacy and safety, especially given differing side effect profiles. An international, multicentre, double-blind, dose increment, parallel-arm, RCT is planned. Inclusion criteria include: adults with cancer experiencing NCP refractory to opioids Brief Pain Inventory (BPI)-item 3 (worst pain) of ≥4 Neuropathic Pain on the Leeds Assessment of Neuropathic Symptoms and Signs Pain Scale of ≥12 despite of an adequate trial of regular opioid medication (≥60 mg/day oral morphine equivalent dose). Patients with CIPN are excluded. The study will recruit from palliative care teams (both inpatients and outpatients) in Japan and Australia. Participants will be randomised (1:1 allocation ratio) to duloxetine or pregabalin arm. Dose escalation is until day 14 and from day 14 to 21 is a dose de-escalation period to avoid withdrawal effects. The primary endpoint is defined as the mean difference in BPI item 3 for worst pain intensity over the previous 24 hours at day 14 between groups. A s le size of 160 patients will be enrolled between February 2020 and March 2023. Ethics approval was obtained at Osaka City University Hospital Certified Review Board and South Western Sydney Local Health District Human Research Ethics Committee. The results of this study will be submitted for publication in international journals and the key findings presented at international conferences. jRCTs051190097, ACTRN12620000656932.
Publisher: Mary Ann Liebert Inc
Date: 2023
Publisher: SAGE Publications
Date: 11-06-2019
Abstract: We show that tourism to a World Heritage Area generates economic opportunities in nearby rural communities, sufficient to reverse migration to the city. To carry out this test, we used an isolated region with a simple economic structure and a newly declared WHA, and analyzed economic constraints, opportunities, and decision processes at the micro scale of in idual households, through qualitative analysis of interviews and on-site audits. Tourism triggered a switch from accelerating decline of rural villages, with closing schools and abandoned buildings and farmland, to accelerating recovery and reinvigoration, with new ecolodges and adventure tours employing household members and other local residents. The switch was assisted by low-interest ecotourism loans. It has also generated new economic opportunities for women specifically, and these have created much greater social freedom and self-determination, now also accepted by men.
Publisher: Springer Science and Business Media LLC
Date: 07-05-2018
DOI: 10.1007/S00520-018-4238-6
Abstract: The assessment of constipation symptoms is based on history and physical examination. However, the experience is highly subjective perhaps explaining why palliative medicine doctors continue to use plain abdominal radiographs as part of routine assessment of constipation. Previous studies have demonstrated poor agreement between clinicians with this work in palliative care, limited further by disparity of clinicians' experience and training. The aim of this work was to explore whether there was less variation in the assessments of faecal shadowing made by more experienced clinicians compared to their less experienced colleagues. This pragmatic study was conducted across six palliative care services in Sydney (NSW, Australia). Doctors of varying clinical experience were asked to independently report their opinions of the amount of shadowing seen on 10 plain abdominal radiographs all taken from cancer patients who self-identified themselves as constipated. There were 46 doctors of varying clinical experience who participated including qualified specialists, doctors in specialist training and lastly, doctors in their second- and third post-graduate years. Poor agreement was seen between the faecal shadowing scores allocated by doctors of similar experience and training (Fleiss's kappa (FK): RMO 0.05 registrar 0.06 specialist 0.11). Further, when the levels of agreement between groups were considered, no statistically significant differences were observed. Although the doctors did not agree on the appearance of the film, the majority felt they were able to extrapolate patients' experiences from the radiograph's appearance. As it remains challenging in palliative care to objectively assess and diagnose constipation by history and imaging, uniform and objective assessment and diagnostic criteria are required. It is likely that any agreed criteria will include a combination of imaging and history. The results suggest the use of radiographs alone to diagnose and assess constipation in palliative care represents low value care.
Publisher: Elsevier BV
Date: 08-2023
Publisher: Hindawi Limited
Date: 25-05-2022
DOI: 10.1111/HSC.13849
Abstract: Preliminary research suggests that meditation may provide benefits in psychological health and well-being in people with cardiovascular disease (CVD). However, little is known about health professionals' perceptions of the barriers and facilitators to integrating meditation into CVD. A descriptive qualitative study design with semi-structured interviews was used to explore the acceptability of integrating meditation into outpatient CVD programs and the organisational factors that may affect its integration. Clinicians were recruited through purposive and snowball s ling. E-mail addresses were obtained from publicly listed profiles of cardiovascular and relevant health organisations. Interview questions included perspectives of organising or delivering meditation within a health setting, format of meditation delivery, organisational or other factors that facilitate or present barriers to integrating meditation into clinical practice, and perceived risks associated with integrating meditation in clinical settings. Verbatim transcripts were thematically analysed using an inductive approach and the Braun and Clarke (2006) method to identify themes within barriers and facilitators to implementation. Eighteen predominately female (61%) senior nursing and medical professionals (61%), as well as health managers (17%), psychologists (11%) and allied health professionals (11%), aged 40-60 years were interviewed between 18 May 2017 and 29 March 2018 in Australia via telephone, or face-to-face at a university or the participants' workplace. Three key themes were identified including: enhancing awareness of meditation within a biomedical model of care, building the evidence for meditation in CVD and finding an organisational fit for meditation in cardiovascular care. Meditation was perceived to sit outside the existing health service structure, which prioritised the delivery of medical care. Health professionals perceived that some physicians did not recognise the potential for meditation to improve cardiovascular outcomes while others acknowledged meditation's positive benefits as a safe, low-cost strategy. The benefits of meditation were perceived as subjective, based on preliminary evidence. Health professionals perceived that aligning meditation with health organisational objectives and integrating meditation into outpatient cardiac rehabilitation and community-based secondary prevention pathways is needed. A fully powered clinical trial is required to strengthen the evidence regarding the role of meditation for psychological health in CVD. Generating clinician engagement and support is necessary to enhance awareness of meditation's use in cardiovascular secondary prevention.
Publisher: Elsevier BV
Date: 09-2011
DOI: 10.1016/J.IJNURSTU.2011.02.015
Abstract: This study investigated the psychometric properties of the 'Palliative care self-efficacy scale', an instrument designed to assess clinicians' degree of confidence in engaging in patient and family interactions at the end-of-life. The instrument was administered to 405 aged care professionals employed in nine aged care facilities. Exploratory factor analysis and internal consistency statistics were undertaken. A two-factor solution of the 'Palliative care self-efficacy scale' was extracted with factor loadings above the 0.4 cutoff. Cronbach's alpha of the scale and subscales ranged from 0.87 to 0.92. The 'Palliative care self-efficacy scale' demonstrates good validity and reliability. The 'Palliative care self-efficacy scale' can be a useful tool in assessing and monitoring clinicians' perceived capacity to provide a palliative approach. Further evaluation in other s les and settings is required.
Publisher: Springer Science and Business Media LLC
Date: 06-2015
Publisher: Oxford University Press (OUP)
Date: 02-2022
Abstract: Prognostic uncertainty and the need for proxy decision-making owing to cognitive impairment in advanced dementia, adds complexity to end-of-life care planning within the long-term care setting. Case conferences provide a structure to facilitate difficult conversations and an opportunity for family and clinicians to engage in prospective planning, and reach agreement on goals of end-of-life care. To explore interactions between multidisciplinary healthcare clinicians and families during facilitated case conferences on end-of-life care for residents with advanced dementia. A qualitative approach was used. Transcripts of audio-recorded case conferences facilitated by a trained registered nurse were coded by two independent researchers and analysed inductively. Transcripts were selected from an available pool until thematic saturation was reached. Emerging themes were confirmed with the wider research group. Thematic saturation was reached after 25 transcripts. An overarching theme concerned the ways in which clinicians and families bridged medical and person-centred perspectives. Subthemes included: details of day-to-day care versus establishing overall goals of care expression of emotion versus retreat from emotion and missed opportunities versus expressed cues. Successful facilitation served to ‘bridge the gap’ between family and clinicians. Facilitation of case conferences for residents with advanced dementia should focus on ensuring that: clinicians do not miss opportunities to discuss end-of-life care discussions on the minutiae of care regularly return to the resident’s broader goals of care and information on dementia and treatments provided by clinicians is integrated with advice by family members regarding the resident’s premorbid values and likely preferences.
Publisher: Springer Science and Business Media LLC
Date: 29-11-2019
DOI: 10.1038/S41533-019-0152-8
Abstract: Chronic breathlessness is debilitating and frightening, often resulting in emergency department presentations with acute-on-chronic breathlessness. Self-management is complex, involving 14 components as identified by the Practical Systematic Review in Self-Management Support (PRISMS). Low-intensity educational interventions that support breathlessness self-management through written/visual educational materials, alongside limited health professional support, are available. Our aim was to describe components of low-intensity educational interventions that support and improve self-management for adults with chronic breathlessness and evaluate their efficacy for improving breathlessness-related outcomes. A systematic review was conducted, including RCTs that compared these interventions with usual care in adults with chronic disease. Synthesis took a narrative approach utilizing the PRISMS taxonomy and Template for Intervention Description and Replication (TIDieR) checklist. Of the 1948 articles identified, 7 met criteria reporting 7 RCTs using 6 interventions. Studies utilized 12 out of 14 PRISMS components, the most frequent being training/rehearsal for psychological strategies. Evidence for effectiveness was inconsistent and attempts to identify beneficial components were confounded by intervention complexity and heterogeneity. The optimal content and delivery of low-intensity educational interventions that support self-management to improve chronic breathlessness-related outcomes in adults cannot be defined from current published literature. Future research should incorporate more detailed, standardized reporting to enable comparison and meta-analysis.
Publisher: Elsevier BV
Date: 03-2019
DOI: 10.1016/J.JGO.2018.07.004
Abstract: Geriatric assessment (GA) is a multidimensional health assessment of the older person to evaluate their physical and cognitive function, comorbidities, nutrition, medications, psychological state, and social supports. GA may help oncologists optimise care for older patients with cancer. The aim of this study was to explore the views of Australian medical oncologists regarding the incorporation of geriatric screening tools, GA and collaboration with geriatricians into routine clinical practice. Members of the Medical Oncology Group of Australia were invited to complete an online survey that evaluated respondent demographics, practice characteristics, treatment decision-making factors, use of GA, and access to geriatricians. Sixty-nine respondents identified comorbidities, polypharmacy, and poor functional status as the most frequent challenges in caring for older patients with cancer. Physical function, social supports and nutrition were the most frequent factors influencing treatment decision-making. The majority of respondents perceived value in GA and geriatrician review, although access was a barrier for referral. Such services would need to be responsive, providing reports within two weeks for the majority of respondents. Despite an emerging evidence base for the potential benefits of GA and collaboration with geriatricians, medical oncologists reported a lack of access but a desire to engage with these services.
Publisher: Wiley
Date: 11-2009
Publisher: Springer Science and Business Media LLC
Date: 19-06-2020
DOI: 10.1007/S10741-019-09814-0
Abstract: To appraise published studies on the use of supplemental oxygen in chronic heart failure. Chronic breathlessness is a characterizing symptom of symptomatic heart failure resulting in substantial disability and healthcare utilization and is the primary reason for emergency room visits and hospitalizations. In spite of the variable evidence, oxygen therapy is commonly administered both acutely and chronically. Moreover, the role of oxygen therapy to relieve chronic breathlessness in heart failure is not well described, particularly in normoxemic or mild or intermittent hypoxemic states. In fact, several studies have shown the detrimental effects of oxygen therapy with normal oxygen saturation levels. A systematic review using PRISMA guidelines. Four databases PubMed, Embase, CINAHL, and Web of Science were systematically searched from January 2001 to January 2019 investigating the use of oxygen in heart failure. Duplicate articles were removed from the review. Titles and abstracts were screened for inclusion and exclusion criteria. The remaining full-text articles were reviewed and hand-searched for additional references. The quality of the full-text articles was assessed using standardized critical appraisal instruments by the Joanna Briggs Institute. A total of 11 studies, including three intervention and eight non-interventions studies, were included in this review from 1072 non-duplicated records retrieved. S le size ranged from 4 to 5862. In spite of common usage, this review suggests that there are scant data available to justify the use of oxygen in in iduals with non-hypoxemic chronic heart failure and chronic breathlessness.
Publisher: SAGE Publications
Date: 25-06-2021
DOI: 10.1177/02692163211024451
Abstract: Access to palliative care in the community enables people to live in their preferred place of care, which is often home. Community palliative care services struggle to provide timely 24-h services to patients and family. This has resulted in calls for ‘accessible and flexible’ models of care that are ‘responsive’ to peoples’ changing palliative care needs. Digital health technologies provide opportunities to meet these requirements 24-h a day. To identify digital health technologies that have been evaluated for supporting timely assessment and management of people living at home with palliative care needs and/or their carer(s), and the evidence-base for each. A systematic review of systematic reviews (‘meta-review’). Systematic reviews evaluating evidence for virtual models of palliative or end-of-life care using one or more digital health technologies were included. Systematic reviews were evaluated using the Risk of Bias Tool for Systematic Reviews. A narrative approach was used to synthesise results. Medline, Embase, Web of Science, CINAHL and Cochrane Database of systematic reviews were searched for English-language reviews published between 2015 and 2020. The search yielded 2266 articles, of which 12 systematic reviews met criteria. Sixteen reviews were included in total, after four reviews were found via handsearching. Other than scheduled telehealth, video-conferencing, or after-hours telephone support, little evidence was found for digital health technologies used to deliver virtual models of palliative care. There are opportunities to test new models of virtual care, beyond telehealth and/or video conferencing, such as 24-h command centres, and rapid response teams. Prospero CRD42020200266
Publisher: AMPCo
Date: 06-2014
DOI: 10.5694/MJA13.10998
Publisher: SAGE Publications
Date: 17-09-2013
Abstract: Delirium is a serious neuropsychiatric syndrome frequently experienced by palliative care inpatients. This syndrome is under-recognized by clinicians. While screening increases recognition, it is not a routine practice. This systematic review aims to examine methods, quality, and results of delirium prevalence and incidence studies in palliative care inpatient populations and discuss implications for delirium screening. A systematic search of the literature identified prospective studies reporting on delirium prevalence and/or incidence in inpatient palliative care adult populations from 1980 to 2012. Papers not in English or those reporting the occurrence of symptoms not specifically identified as delirium were excluded. Of the eight included studies, the majority (98.9%) involved participants (1079) with advanced cancer. Eight different screening and assessment tools were used. Delirium incidence ranged from 3% to 45%, while delirium prevalence varied, with a range of: 13.3%–42.3% at admission, 26%–62% during admission, and increasing to 58.8%–88% in the weeks or hours preceding death. Studies that used the Diagnostic and Statistical Manual–Fourth Edition reported higher prevalence (42%–88%) and incidence (40.2%–45%), while incidence rates were higher in studies that screened participants at least daily (32.8%–45%). Hypoactive delirium was the most prevalent delirium subtype (68%–86% of cases). The prevalence and incidence of delirium in palliative care inpatient settings supports the need for screening. However, there is limited consensus on assessment measures or knowledge of implications of delirium screening for inpatients and families. Further research is required to develop standardized methods of delirium screening, assessment, and management that are acceptable to inpatients and families.
Publisher: BMJ
Date: 12-2017
DOI: 10.1136/BMJOPEN-2017-017536
Abstract: Breathlessness ‘crises’ in people with chronic respiratory conditions are a common precipitant for emergency department (ED) presentations, many of which might be avoided through improved self-management and support. This study sought insights from people with experience of ED ‘near misses’ where they considered going to the ED but successfully self-managed instead. A qualitative approach was used with a phenomenological orientation. Participants were eligible if they reported breathlessness on most days from a diagnosed respiratory condition and experience of ≥1 ED near miss. Recruitment was through respiratory support groups and pulmonary rehabilitation clinics. Semistructured interviews were conducted with each participant via telephone or face-to-face. Questions focused on ED-related decision-making, information finding, breathlessness management and support. This analysis used an integrative approach and independent coding by two researchers. Lazarus and Cohen’s Transactional Model of Stress and Coping informed interpretive themes. Interviews were conducted with 20 participants, 15 of whom had chronic obstructive pulmonary disease. Nineteen interviews were conducted via telephone. Analysis identified important factors in avoiding ED presentation to include perceived control over breathlessness, self-efficacy in coping with a crisis and desire not to be hospitalised. Effective coping strategies included: taking a project management approach that involved goal setting, monitoring and risk management managing the affective dimension of breathlessness separately from the sensory perceptual and building three-way partnerships with primary care and respiratory services. In addition to teaching non-pharmacological and pharmacological management of breathlessness, interventions should aim to develop patients’ generic self-management skills. Interventions to improve self-efficacy should ensure this is substantiated by transfer of skills and support, including knowledge about when ED presentation is necessary. Complementary initiatives are needed to improve coordinated, person-centred care. Future research should seek ways to break the cyclical relationship between affective and sensory-perceptual dimensions of breathlessness.
Publisher: Elsevier BV
Date: 2020
Publisher: Future Medicine Ltd
Date: 03-2022
Abstract: Genetic and genomic data are increasingly guiding clinical care for cancer patients. To meet the growing demand for precision medicine, patient-facing oncology staff will be a part of leading the provision of genomic testing. A scoping review was undertaken to identify the range of genetic and genomic learning needs of oncologists and oncology nurses. Learning needs were reported relating to interpretation of genomic data, clinical decision-making, patient communication and counseling, and fundamentals of genetics and genomics. There was a lack of empirical research specific to oncology nurses and their learning needs in tumor sequencing. Our findings suggest that oncologists and oncology nurses need tailored support, education and training to improve their confidence and skills in adopting genomic testing into clinical practice.
Publisher: Wiley
Date: 29-05-2019
DOI: 10.1111/MEDU.13895
Abstract: Ensuring clinical practice reflects current evidence is challenging given the rapid proliferation of new knowledge. Changing entrenched clinical behaviours and facilitating the adoption of best practice evidence requires a range of strategies, including affordable, scalable and effective continuing professional development (CPD). Yet, identifying the CPD delivery method most likely to effectively change and improve patient outcomes is difficult given the variability in the evidence for different learning approaches. Although there is moderate level evidence for outreach education, audit and feedback, and face-to-face or online learning, little is known about the capacity of spaced education to change ineffective clinical practice(s). Spaced education harnesses the power of spacing, repetition and testing learning content to increase topic-specific knowledge. Although spaced education is widely used in undergraduate and postgraduate medical programmes, its effectiveness as a CPD delivery method that improves patient outcomes is less certain. To determine the effectiveness of the spaced education CPD programmes to change targeted clinical knowledge and practice(s) to improve patient outcomes. A systematic review, appraising the spaced education CPD evidence generated from searching six specialist medical and psychosocial databases. Studies published in English peer-reviewed journals from 1 January, 2000 to 31 August, 2018 were eligible for inclusion. A modified Kirkpatrick four levels of evaluation framework assisted with appraising the effect of spaced education CPD interventions on clinicians and patients. Of the 2396 studies identified, 17 met the inclusion criteria, involving 2701 practising clinicians from multiple disciplines and specialties. Five randomised controlled trials generated level II evidence, with the remaining 12 studies generating lower levels of evidence. The majority of studies (n = 14) involved the delivery of online spaced education. All studies were evaluated using the modified Kirkpatrick four levels of evaluation framework with: 10 studies demonstrating significant increases in participants' knowledge seven studies reporting significant changes in clinician behaviour four studies showing significant increases in clinician confidence and three studies identifying significant and sustained increases in participants' clinical skills. Only two studies reported positive improvements in patient outcomes. Spaced education via an online platform offers a scalable CPD format that can increase clinical knowledge and change practice. However, further adequately powered randomised controlled trials are required to confirm that spaced education CPD can impact positively on patients' reported outcomes.
Publisher: Elsevier BV
Date: 11-2014
DOI: 10.1016/J.NEPR.2014.05.013
Abstract: EVITEACH aimed to increase undergraduate nursing student's engagement with evidence-based practice and enhance their knowledge utilisation and translation capabilities. Building students capabilities to apply evidence in professional practice is a fundamental university role. Undergraduate nursing students need to actively engage with knowledge utilisation and translational skill development to narrow the evidence practice gap in the clinical setting. A two phase mixed methods study was undertaken over a three year period (2008-2010, inclusive) utilizing a Plan-Do-Study-Act (PDSA) approach. Three undergraduate nursing cohorts (N = 188) enrolled in a compulsory knowledge translation and utilisation subject at one Australian university participated. Data collection comprised of subject evaluation data and reflective statements. Preliminary investigations identified priority areas related to subject: materials, resources, teaching and workload. These priority areas became the focus of action for two PDSA cycles. PDSA cycle 1 demonstrated significant improvement of the subject overall (p > 0.05), evaluation of the materials used (p > 0.001) and teaching sub-groups (p > 0.05). PDSA cycle 2 continued to sustain improvement of the subject overall (p > 0.05). Furthermore reflective statements collected during PDSA cycle 2 identified four themes: (1) What engages undergraduate nurses in the learning process (2) The undergraduate nurses learning trajectory (3) Undergraduate nurses' preconceptions of research and evidenced-based practice and (4) Appreciating the importance of research and evidence-based practice to nursing. There is little robust evidence to guide the most effective way to build knowledge utilisation and translational skills. Effectively engaging undergraduate nursing students in knowledge translation and utilisation subjects could have immediate and long term benefits for nursing as a profession and patient outcomes. Developing evidence-based practice capabilities is important in terms of improving patient outcomes, organisational efficiencies and creating satisfying work environments.
Publisher: Elsevier BV
Date: 12-2019
DOI: 10.1016/J.JPAINSYMMAN.2019.07.022
Abstract: Physical activity for women with early-stage breast cancer is well recognized for managing cancer-related symptoms and improving quality of life. While typically excluded from interventions, women with metastatic breast cancer may also benefit from physical activity. To 1) determine the safety and feasibility of a physical activity program for women with metastatic breast cancer and 2) explore the efficacy of the program. Fourteen women with metastatic breast cancer were randomized to either a control group or an 8-week home-based physical activity intervention comprising twice weekly supervised resistance training and an unsupervized walking program. The recruitment rate was 93%. Adherence to the resistance and walking components of the program was 100% and 25%, respectively. No adverse events were reported. When mean change scores from baseline to postintervention were compared, trends in favor of the exercise group over the control group were observed for the Functional Assessment of Chronic Illness Therapy-Fatigue score (+5.6 ± 3.2 vs. -1.8 ± 3.9, respectively), VO A partially supervised home-based physical activity program for women with metastatic breast cancer is feasible and safe. The dose of the resistance training component was well tolerated and achievable in this population. In contrast, adherence and compliance to the walking program were poor. Preliminary data suggest a physical activity program, comprising predominantly resistance training, may lead to improvements in physical capacity and may help women to live well with their disease.
Publisher: Elsevier BV
Date: 12-2015
DOI: 10.1016/J.COLEGN.2014.07.001
Abstract: Models of palliative care need to address the unmet needs of children, young people and families. To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of children and young people with palliative care needs and their parents. Electronic databases including CINAHL, Medline, PsycINFO and AMED searched using combined terms for palliative care, service models and children along with reference lists of included studies. Peer reviewed empirical studies reporting on evaluation of paediatric palliative care by children and young people with palliative care needs (0-19 years), or their families, published in English, between 2000 and 2013. The views of health professionals and grey literature were excluded. Quality appraisal completed by two researchers, consensus reached following discussion. Data extracted by two researchers, entered into an electronic proforma and synthesised using a narrative approach. Seven studies were identified of which two were quantitative, one was qualitative and four were mixed methods. Synthesis highlighted the need for tailored support enabling flexibility in care, with specific reference to location of care and access to psychosocial support, 24h specialist support, respite care and sibling support. Paediatric palliative care should be flexible, responsive and tailored to the needs of children and their families. Robust evaluation of models of care that incorporate these elements is required to inform optimal care.
Publisher: Springer International Publishing
Date: 2018
Publisher: Elsevier BV
Date: 2018
Publisher: Elsevier BV
Date: 2019
Publisher: Elsevier BV
Date: 02-2020
Publisher: Elsevier BV
Date: 11-2011
Publisher: Mark Allen Group
Date: 05-2011
DOI: 10.12968/IJPN.2011.17.5.224
Abstract: The aim of this paper is to describe the emerging role of the palliative care clinical trials nurse in an era of evidence-based practice and increasing clinical trial activity in palliative care settings across Australia. An overview of the current clinical trials work is provided, with a focus on three aspects of clinical trials nursing practice that have significant implications for patients: managing the consent process, integrating clinical trials into multidisciplinary care, and establishing and building the evidence base to inform practice in palliative care settings. Clinical trials roles provide palliative care nurses with an opportunity to contribute to clinical research, help expand palliative care's evidence base, and develop their own research capabilities.
Publisher: Wiley
Date: 03-11-2019
DOI: 10.1111/AJAG.12739
Abstract: To identify caregiving characteristics that are associated with financial stress in Australian carers of people with a chronic disease. Data were collected via the South Australian Health Omnibus, an annual population-based, cross-sectional survey. In iduals who provided care to someone with prevalent chronic conditions were asked about financial stress and caregiving characteristics. Of 32.4% (988/3047) who were carers, 13.4% (132/988) experienced financial stress. Adjusting for age and household income, providing more than 20 hours of care per week (AOR = 2.39, 95% CI = 1.48-3.86), transport assistance (AOR = 1.89, 95% CI = 1.15-3.09) and assistance with household tasks (AOR = 1.92, 95% CI = 1.14-3.26) and caring for a person with a mental illness (AOR = 2.01, 95% CI = 1.24-3.28) were associated with a significant increase in odds of experiencing financial stress. Caring for a person with cancer (AOR = 0.49, 95% CI = 0.30-0.81) or dementia (AOR = 0.40, 95% CI = 0.21-0.76) was associated with decrease in odds. Financial stress was reported by more than 13% of carers, and factors other than household income were implicated.
Publisher: BMJ
Date: 11-07-2019
DOI: 10.1136/BMJSPCARE-2019-001869
Abstract: Patient-relevant measures of functional status are required in chronic obstructive pulmonary disease (COPD) and lung cancer in clinical practice and research. We explored the relationship between the Australia-modified Karnofsky Performance Scale (AKPS) and measures of functional capacity and physical activity in these patient groups. Pooled clinical trial data were analysed to explore the relationship between AKPS and average daily steps (ADS), 6 min walk distance (6MWD), and body mass index, airflow obstruction, dyspnoea and exercise score (COPD group). Receiver operator characteristic curves were produced to compare sensitivity and specificity of cut-offs (no dependency , high dependency ) and area under the curve (AUC). Seven clinical trials included people with COPD (n=79) and lung cancer (n=150). To detect an AKPS of , the optimal ADS cut-points were COPD, 3342 steps (AUC 0.88, 95% CI 0.79 to 0.97, sensitivity 82%, specificity 76%), and lung cancer, 3380 steps (AUC 0.72, 95% CI 0.64 to 0.81, sensitivity 61%, specificity 74%), and for 6MWD (COPD only) 242 m (AUC 0.72, 95% CI 0.63 to 0.81, sensitivity 73%, specificity 34%). An AKPS score is strongly related to ADS in people with COPD and lung cancer. The AKPS may be useful in clinical practice and research to indicate levels of physical activity where ADS and 6 min walk test are not possible. Longitudinal data are needed to confirm these findings.
Publisher: Wiley
Date: 06-06-2022
DOI: 10.1002/GPS.5764
Abstract: The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta‐review aimed to (1) synthesis evidence on the self‐reported needs of care partners supporting people living with neurodegenerative disorders (2) compare the needs according to care partner and care recipient characteristics and (3) determine the face validity of existing care partner needs assessment tools. We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross‐matching them with the needs derived from the thematic synthesis. Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self‐care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The ‘captured needs’ range between 8% and 66% across all the included needs assessment tools. Current tools do not fully or adequately capture the self‐identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID‐19 (SARS CoV‐2) pandemic, the needs assessment tools should align with the self‐reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.
Publisher: Wiley
Date: 14-04-2015
DOI: 10.1111/AJCO.12352
Abstract: To develop clinical practice guidelines for screening, assessing and managing cancer pain in Australian adults. This three-phase project utilized the ADAPTE approach to adapt international cancer pain guidelines for the Australian setting. A Working Party was established to define scope, screen guidelines for adaptation and develop recommendations to support better cancer pain control through screening, assessment, pharmacological and non-pharmacological management, and patient education. Recommendations with limited evidence were referred to Expert Panels for advice before the draft guidelines were opened for public consultation via the Cancer Council Australia Cancer Guidelines Wiki platform in late 2012. All comments were reviewed by the Working Party and the guidelines were revised accordingly. Screening resulted in six international guidelines being included for adaptation - those developed by the Scottish Intercollegiate Guidelines Network (2008), National Health Service Quality Improvement Scotland (2009), National Comprehensive Cancer Network (2012), European Society of Medical Oncology (2011), European Association for Palliative Care (2011, 2012) and National Institute of Clinical Excellence (2012). Guideline adaptation resulted in 55 final recommendations. The guidelines were officially launched in November 2013. International guidelines can be efficiently reconfigured for local contexts using the ADAPTE approach. Availability of the guidelines via the Cancer Council Australia Wiki is intended to promote uptake and enable recommendations to be kept up to date. Resources to support implementation will also be made available via the Wiki if found to be effective by a randomized controlled trial commencing in 2015.
Publisher: Cambridge University Press (CUP)
Date: 18-01-2017
DOI: 10.1017/S1478951516001024
Abstract: Sleep disturbances are a common issue for those who provide informal care to someone with a life-limiting condition. The negative consequences of poor sleep are well documented. The purpose of the present study was to determine the sleep patterns of caregivers of patients with advanced cancer. An extensive systematic review of studies reporting empirical sleep data was undertaken in 2015 in accordance with the PRISMA Statement. A total of eight electronic databases were searched, with no date restrictions imposed. Additionally, a search of the bibliographies of the studies identified during the electronic search was conducted. Search terms included: “sleep,” “insomnia,” “sleep disturbance,” “circadian rhythm,” “caregiver,” “carer,” “advanced cancer,” “palliative cancer,” and MESH suggestions. The inclusion criteria required studies to be in English and to report primary qualitative and/or quantitative research that examined sleep in caregivers of patients with advanced cancer. Unpublished studies, conference papers, and dissertations were excluded. Overall, 10 studies met the inclusion criteria and were included in the review. Two major findings emerged from the data synthesis. First, at least 72% of caregivers reported moderate to severe sleep disturbance as measured by the Pittsburgh Sleep Quality Index. Second, objective measurement of caregivers' sleep identified that some caregivers experienced up to a 44% reduction in their total sleep time compared to the recommended eight hours. Reduction in total sleep time appears to be the biggest issue facing caregivers' sleep. Future studies need to explore the specific factors that cause these sleep disturbances and thus help to identify interventions to optimize sleep.
Publisher: CSIRO Publishing
Date: 2015
DOI: 10.1071/AH14187
Abstract: Objectives A drive to promote advance care planning at a population level has led to a proliferation of online advance care directive (ACD) templates but little information to guide consumer choice. The current study aimed to appraise the quality of online ACD templates promoted for use in Australia. Methods A systematic review of online Australian ACD templates was conducted in February 2014. ACD templates were identified via Google searches, and quality was independently appraised by two reviewers against criteria from the 2011 report A National Framework for Advance Care Directives. Bias either towards or against future medical treatment was assessed using criteria designed to limit subjectivity. Results Fourteen online ACD templates were included, all of which were available only in English. Templates developed by Southern Cross University best met the framework criteria. One ACD template was found to be biased against medical treatment – the Dying with Dignity Victoria Advance Healthcare Directive. Conclusions More research is needed to understand how online resources can optimally elicit and record consumers’ in idual preferences for future care. Future iterations of the framework should address online availability and provide a simple rating system to inform choice and drive quality improvement. What is known about the topic? Online availability of ACD templates provides consumers with an opportunity for advance care planning outside of formal healthcare settings. While online availability has advantages, there is a risk that templates may be biased either for or against medical treatment and may not elicit directives that are appropriately informed by reflection on personal values and discussion with family and health professionals. What does this paper add? This is the first attempt at monitoring the quality and bias of online ACD templates designed for use in Australia. What are the implications for practitioners? The results of this review provide a description and quality index to assist consumers and clinicians in deciding which online ACD template to use or recommend.
Publisher: Springer International Publishing
Date: 30-10-2021
Publisher: BMJ
Date: 05-2022
DOI: 10.1136/BMJRESP-2022-001210
Abstract: Regular, low-dose, sustained-release morphine is effective in reducing chronic breathlessness in people with advanced disease, particularly in patients with chronic obstructive pulmonary disease (COPD). Despite experiencing a reduction in breathlessness, some patients choose not to continue long-term treatment. This study aimed to explore patients’ and caregivers’ experiences with regular, low-dose, sustained-release morphine for chronic breathlessness associated with COPD. A qualitative study embedded in a randomised controlled trial (RCT) of regular low-dose, sustained-release morphine for chronic breathlessness for people with COPD and modified Medical Research Council breathlessness scale 3–4. After completing the RCT or withdrawing, patients and their caregivers were invited to participate in interviews in their homes focused on their experiences with the trial medication while still blinded to the arm to which they had been allocated. Data analysis used a constant comparative method informed by the principles of grounded theory. Thirteen patients and nine caregivers participated. Four themes were identified: (1) Receptivity and knowledge (2) Function as a priority (3) Harmful and helpful side effects and (4) Therapy-centred aspects. The concept of ‘net effect’ emerged from the interplay between themes, subthemes and the decision to continue taking sustained-release morphine during the trial and after trial completion. Clinicians’ support and preconceived ideas about morphine influence the decision to commence sustained-release morphine. The hope for functional improvement is the great driver influencing positively the decision to take sustained-release morphine in the long term. The degree of symptom reduction, improved function, side-effects’ severity and caregivers’ availability creates a net effect driving patients’ decisions to continue or discontinue the medication.
Publisher: Mark Allen Group
Date: 06-2007
DOI: 10.12968/IJPN.2007.13.6.23743
Abstract: Aim: To assess the views and attitudes of aged care staff providing direct care towards palliative care and to identify their learning needs. Design: Survey design using purposive s ling methods. Findings: Nurses and care assistants (n=222) employed within nine residential aged care facilities in regional Australia completed the survey. The majority had received ‘on the job training’ and were committed to providing end-of-life care. Differences in the level of confidence to deal with patient/family interactions and manage complex palliative care scenarios were evident between nurses and care assistants (p .05). Both nurses and care assistants perceived a need for further education in symptom management and communication, yet their content need differed significantly between groups. Conclusions: Nurses and care assistants in residential aged care facilities demonstrate commitment to the delivery of palliative care and express a need for increased palliative care competencies. The heterogeneity of roles and educational preparation within the aged care workforce indicate that tailored palliative care education initiatives are required to meet the learning needs of aged care nurses and care assistants, particularly in relation to end-of-life care. These data have implications for skill-mix and model of care development.
Publisher: Springer International Publishing
Date: 2019
Publisher: Elsevier BV
Date: 06-2014
DOI: 10.1016/J.JPAINSYMMAN.2013.06.017
Abstract: The spatial environments that palliative care patients frequent for business and leisure constrict as their disease progresses and their physical functioning deteriorates. Measuring a person's movement within his or her own environment is a clinically relevant and patient-centered outcome because it measures function in a way that reflects actual and not theoretical participation. This exploratory study set out to test whether the Life-Space Assessment (LSA) would correlate with other commonly used palliative care outcome measures of function and quality of life. The baseline LSA, Australia-modified Karnofsky Performance Status Scale (AKPS), and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative (EORTC QLQ-C15-PAL) scores from two large clinical trials were used to calculate correlation coefficients between the measures. Convergent validity analysis was undertaken by comparing LSA scores between participants with higher (≥70) and lower (≤60) AKPS scores. The LSA was correlated significantly and positively with the AKPS, with a moderate correlation coefficient of 0.54 (P<0.001). There was a significant weak negative correlation between the LSA and the EORTC QLQ-C15-PAL, with a small coefficient of -0.22 (P=0.027), but a strong correlation between the LSA and the EORTC QLQ-C15-PAL item related to independent activities of daily living (r=-0.654, P<0.01). A significant difference in the LSA score between participants with higher (≥70) and lower (≤60) AKPS scores t(97)=-4.35, P<0.001) was found. The LSA appears applicable to palliative care populations given the convergent validity and capacity of this instrument to differentiate a person's ability to move through life-space zones by performance status. Further research is required to validate and apply the LSA within community palliative care populations.
Publisher: Elsevier BV
Date: 12-2013
DOI: 10.1016/J.JPAINSYMMAN.2013.01.005
Abstract: Older women commonly assume a caregiving role for their husbands at the end of life and are more vulnerable to poorer health, well-being, and social and economic challenges. The aim of this study was to ascertain older women's experiences of spousal caregiving at the end of life and the ways in which this experience impacts on the transition to widowhood. Longitudinal, in-depth, semistructured interviews were conducted with older women three times over a one-year period after the death of their husbands. This report focuses on the initial interviews that examined the transition from caregiving to widowhood. Transcripts were analyzed using interpretive phenomenological analysis methods. Participants were community-dwelling women older than 65 years who had recently been caregivers for their husbands who died within the past two years. Older women caregivers described their caregiver role as taxing, particularly in light of their own chronic conditions that they failed to prioritize and address. They did not ask for help in managing their roles and health problems, but quietly endured. Hence, they did not communicate their needs or strains explicitly. The degree of perceived adequacy of communication and interaction with health professionals were important factors impacting on their bereavement. It is imperative for health professionals to appreciate that older women caregivers may need more supportive interaction and information during the end-of-life caregiving, they may have expectations of communication, and they may deny or fail to focus on their own health issues. A patient/family/carer-centered approach could negate this oversight and improve the outcomes for these women as they transition into widowhood.
Publisher: Mary Ann Liebert Inc
Date: 03-2021
Publisher: Wiley
Date: 17-07-2006
DOI: 10.1111/J.1365-2648.2006.03945.X
Abstract: This paper is a report of an explorative study describing the perceptions and beliefs about palliative care among nurses and care assistants working in residential aged care facilities in Australia. Internationally, the number of people dying in residential aged care facilities is growing. In Australia, aged care providers are being encouraged and supported by a positive policy platform to deliver a palliative approach to care, which has generated significant interest from clinicians, academics and researchers. However, a little is known about the ability and capacity of residential aged care services to adopt and provide a palliative approach to care. Focus groups were used to investigate the collective perceptions and beliefs about palliative care in a convenience s le of nurses and care assistants working in residential aged care facilities in Australia. Thematic content analysis was used to analyse the data, which were collected during 2004. Four major themes emerged: (1) being like family (2) advocacy as a key role (3) challenges in communicating with other healthcare providers (4) battling and striving to succeed against the odds. Although participants described involvement and commitment to quality palliative care, they also expressed a need for additional education and support about symptom control, language and access to specialist services and resources. The residential aged care sector is in need of support for providing palliative care, yet there are significant professional and system barriers to care delivery. The provision of enhanced palliative care educational and networking opportunities for nurses and care assistants in residential aged care, augmented by a supportive organizational culture, would assist in the adoption of a palliative approach to service delivery and requires systematic investigation.
Publisher: American Medical Association (AMA)
Date: 21-02-2022
Publisher: Oxford University Press
Date: 10-05-2015
Publisher: Elsevier BV
Date: 06-2022
Start Date: 2016
End Date: 2018
Funder: Cancer Council Western Australia
View Funded ActivityStart Date: 2016
End Date: 2018
Funder: Cancer Australia
View Funded ActivityStart Date: 2016
End Date: 2021
Funder: Cancer Institute NSW
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End Date: 2016
Funder: University of Technology Sydney
View Funded ActivityStart Date: 2016
End Date: 2019
Funder: Cancer Australia
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End Date: 2019
Funder: NSW Health
View Funded ActivityStart Date: 2017
End Date: 2019
Funder: Cancer Australia Priority Driven Collaborative Cancer Research Scheme
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End Date: 2018
Funder: University of Technology Sydney - Health Futures
View Funded ActivityStart Date: 2018
End Date: 2019
Funder: Cancer Australia
View Funded ActivityStart Date: 2018
End Date: 2018
Funder: University of Technology Sydney - School Health Seed Grant
View Funded ActivityStart Date: 2018
End Date: 2020
Funder: Sydney West Translational Cancer Research Centre
View Funded ActivityStart Date: 2019
End Date: 2022
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2019
End Date: 2020
Funder: Cancer Australia
View Funded ActivityStart Date: 2018
End Date: 2021
Funder: Sydney Partnership for Health Education, Research and Enterprise
View Funded ActivityStart Date: 2020
End Date: 2020
Funder: National Palliative Care Research Center
View Funded ActivityStart Date: 2020
End Date: 2025
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2011
End Date: 2015
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2005
End Date: 2005
Funder: Department of Health and Ageing, Australian Government
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End Date: 2010
Funder: Clinical Oncology Society of Australia
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End Date: 2010
Funder: St. Vincent's Clinic Foundation
View Funded ActivityStart Date: 2010
End Date: 2013
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2010
End Date: 2010
Funder: Department of Health and Ageing Mid North Coast Integrated Network Palliative Care Project
View Funded ActivityStart Date: 2010
End Date: 2012
Funder: National Breast Cancer Foundation
View Funded ActivityStart Date: 2011
End Date: 2012
Funder: University of Technology Sydney - Partnership Grant
View Funded ActivityStart Date: 2011
End Date: 2014
Funder: Cancer Institute NSW
View Funded ActivityStart Date: 2011
End Date: 2012
Funder: Cancer Institute NSW
View Funded ActivityStart Date: 2012
End Date: 2012
Funder: University of New South Wales
View Funded ActivityStart Date: 2012
End Date: 2014
Funder: Department of Health and Ageing, Aged Care service Improvement and Health Aging Grants Flexible Fund
View Funded ActivityStart Date: 2012
End Date: 2013
Funder: Flinders University Researcher Award
View Funded ActivityStart Date: 2014
End Date: 2018
Funder: National Breast Cancer Foundation
View Funded ActivityStart Date: 2016
End Date: 2016
Funder: Cancer Council NSW
View Funded ActivityStart Date: 2015
End Date: 2015
Funder: Flinders University - Establishment Grant
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