ORCID Profile
0000-0002-2611-1900
Current Organisations
Université Paris Descartes
,
Université de Paris
,
INSERM
,
Flinders University
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Publisher: JMIR Publications Inc.
Date: 13-07-2017
DOI: 10.2196/MEDEDU.7825
Publisher: BMJ
Date: 07-01-2022
DOI: 10.1136/BMJSPCARE-2021-003299
Abstract: Family carers are vital in the management and delivery of home-based palliative care. Decision-makers need to know what the most commonly expressed unmet needs of family carers are to target available support services. To identify the most commonly expressed needs of family carers of people with an advanced disease, assess the quality of current evidence, and set an agenda for future research and clinical practice. A systematic review of reviews, prospectively registered on PROSPERO. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklist for systematic reviews and research syntheses. MEDLINE, Embase, Emcare, PsycINFO, CINAHL, Informit and Cochrane Library were searched for reviews about the needs of carers looking after patients with advanced disease from 2010 to 2020. Findings from 21 reviews identified emotional support, disease-specific knowledge, carer role responsibilities, self-care and general practical support as the most commonly expressed needs expressed by family carers. Additionally, access to professional services, formal education opportunities and communication with health professionals were identified as caregivers’ preferred ways of having these needs met. Extraction of carer-specific needs was challenging at times as results were often combined with patient results in reviews. Practical difficulties exist in effectively resourcing services to meet the needs of family carers. Information regarding the most commonly expressed needs shared by caregivers and their preferred delivery source can provide an opportunity to focus available support services to achieve the highest possible impact for carers of patients with advanced disease. CRD42018088678.
Publisher: CSIRO Publishing
Date: 19-01-2021
DOI: 10.1071/PY20164
Abstract: This study assessed Australian clinical practice guidelines for life-limiting index conditions for the extent to which they acknowledged comorbidities and framed management recommendations within the context of older age and reduced life expectancy. A comprehensive search identified current, evidence-based Australian guidelines for chronic life-limiting conditions directed at general practitioners. Guideline content was analysed qualitatively before comorbidity acknowledgements were quantified using a 17-item checklist. Full guidelines were quality appraised using AGREE-II. Ten documents covering chronic obstructive pulmonary disease, heart failure, cancer pain, dementia and palliative care in aged care were identified. Most guidelines addressed one ‘comorbid’ condition and prompted clinicians to consider patient quality of life and personal preferences. Fewer addressed burden of treatment and half suggested modifying treatments to account for limited life expectancy, age or time horizon to benefit. Half warned of potential adverse drug interactions. Guidelines were of moderate to very high quality. Guidelines naturally prioritised their index condition, directing attention to only the most common comorbidities. However, there may be scope to include more condition-agnostic guidance on multimorbidity management. This might be modelled on the ‘guiding principles’ approach now emerging internationally from organisations such as the American Geriatrics Society in response to increasing multimorbidity prevalence and evidence limitations.
Publisher: JMIR Publications Inc.
Date: 30-03-2021
DOI: 10.2196/25698
Abstract: As the use of technology to deliver health services is increasing rapidly and has further intensified during the COVID-19 pandemic, these initiatives may fail if ethical impacts are not fully identified and acted upon by practitioners. Ignoring the ethical impacts of information and communication technology health service delivery creates an unintended risk for patients and can lead to reduced effectiveness, noncompliance, and harm, undermining the best intentions of governments and clinicians. Our aim was to explore how ethical considerations or impacts may be different, greater, or more variable in information and communication technology methods versus face-to-face health care delivery models, and how they may be applied in practice. We undertook a systemic literature review to provide a critical overview of existing research into the incorporation of ethical principles into telehealth practice. Six databases were searched between March 2016 to May 2016 and again in December 2020 to provide the benefit of currency. A combination of broad terms (“ethics,” “ethical,” “health,” and “care”) with the restrictive terms of “telehealth” and “telemedicine” was used in keyword searches. Thematic analysis and synthesis of each paper was conducted, aligned to the framework developed by Beauch and Childress. From the 49 papers reviewed, authors identified or discussed the following ethical principles in relation to telehealth practice: autonomy (69% of authors, 34/49), professional–patient relationship (53% of authors, 26/49), nonmaleficence (41% of authors, 20/49), beneficence (39%, of authors, 19/49), and justice (39% of authors, 19/49). Although a small number of studies identified ethical issues associated with telehealth practice and discussed their potential impact on service quality and effectiveness, there is limited research on how ethical principles are incorporated into clinical practice. Several studies proposed frameworks, codes of conduct, or guidelines, but there was little discussion or evidence of how these recommendations are being used to improve ethical telehealth practice.
Publisher: SAGE Publications
Date: 19-08-2016
Abstract: Telehealth technologies are an emerging resource opening up the possibility of greater support if they have utility for patients, carers and clinicians. They may also help to meet health systems’ imperatives for improved service delivery within current budgets. Clinicians’ experiences and attitudes play a key role in the implementation of any innovation in service delivery. To explore clinicians’ perspectives on and experiences of the utilisation of a pilot telehealth model and its integration into a specialist community palliative care programme. Focus groups and interviews generated data that were analysed through the lens of a realistic evaluation theoretical framework. The study was conducted in a metropolitan specialist palliative care service in South Australia. Participants (n = 10) were clinicians involved in the delivery of community specialist palliative care and the piloting of a telehealth programme. Service providers consider telehealth resources as a means to augment current service provision in a complementary way rather than as a replacement for face-to-face assessments. Introducing this technology, however, challenged the team to critically explore aspects of current service provision. The introduction of technologies also has the potential to alter the dynamic of relationships between patients and families and community palliative care clinicians. Implementation of a pilot telehealth programme in a specialist palliative community team needs to involve clinical staff in service redesign from the outset. Reliable IT infrastructure and technical support is critical for telehealth models to be effective and will aid uptake.
Publisher: JMIR Publications Inc.
Date: 09-04-2017
Publisher: AMPCo
Date: 10-2014
DOI: 10.5694/MJA13.00175
Abstract: To determine the prevalence of completion of advance directives (ADs) and wills by South Australians aged 15 years and over. Statewide population-based survey of a single member (aged 15 years and over) of 3055 South Australian households between 4 September and 12 December 2012. Prevalence and sociodemographic determinants of completion of the four recognised legal ADs in South Australia (enduring power of attorney [EPA] for finance, enduring power of guardianship [EPG] for health care/lifestyle, medical power of attorney [MPA] for medical treatment and anticipatory direction for end-of-life care) and wills. Nearly half the 3055 survey participants had not completed any AD document or will. Financial documents were more likely to be completed than health care documents. In multivariate analysis, the odds of not having completed any AD was higher among those aged 15-24 years compared with those aged over 65 years (odds ratio [OR], 55.3 95% CI, 31.3-97.7) and 25-44 years (OR, 24.9 95% CI, 17.3-36.1). Similarly, the odds were higher for those born in another country (OR, 2.0 95% CI, 1.6-2.4) those never married (OR, 3.1 95% CI, 2.3-4.2) or in de facto relationships (OR, 2.8 95% CI, 2.1-3.8) or separated/ orced (OR, 1.8 85% CI, 1.3-2.4) compared with those married those who left school in Year 12 or before (OR, 1.5 95% CI, 1.1-1.9) or with a bachelor degree (OR, 1.5 95% CI, 1.1-2.0) compared with those who had completed a trade/apprenticeship, certificate/diploma and those in blue collar occupations (OR 1.6 95% CI, 1.3-2.2) or not employed (OR, 2.2 95% CI, 1.4-3.6) versus professionals. The odds of not having completed any AD were lower for those living in rural or regional areas (OR, 0.8, 95% CI, 0.6-1.0) compared with the metropolitan area, and for those in the highest income bracket earning more than $80 000 (OR, 0.6 95% CI, 0.5-0.8) compared with those in the middle bracket earning $40 000-$80 000. Completion rates of ADs among South Australians remain low, with financial instruments more likely to be completed than health care and lifestyle instruments. The odds of not completing ADs were associated with age and socioeconomic characteristics. General practitioners are in a good position to target advance care planning towards relevant patient groups, which would likely improve rates of decision making in future health care.
Publisher: Springer Science and Business Media LLC
Date: 29-08-2017
Publisher: CSIRO Publishing
Date: 22-11-2021
DOI: 10.1071/PY21019
Abstract: Carers of people with a life-limiting illness report unmet information, practical, and emotional support needs, and are often unaware of services available to help improve preparedness, wellbeing, and reduce strain. CarerHelp is the first e-health toolkit that focuses on the information and support needs of carers of people with a life-limiting illness at the end-of-life, using a pathway approach. This study investigated the usefulness of CarerHelp, from the perspective of health professionals who care for these people. Through a 10-min online survey, health professionals provided feedback about their user experience and perceived usefulness of the website. Their expert opinion was sought to ascertain whether CarerHelp could increase carers’ preparedness and confidence to support the person for whom they are caring and thereby improve carers’ own psychological wellbeing. Health professionals also evaluated whether CarerHelp adequately raised awareness of support services available. CarerHelp was perceived as a useful resource for increasing preparedness for the caring role, including physical tasks and emotional support. Health professionals reported that CarerHelp would increase carers’ knowledge of services, confidence to care and ability for self-care. Health professionals endorsed CarerHelp as a useful information source, guide for support, and would promote CarerHelp to clients and their families.
Publisher: Mark Allen Group
Date: 02-11-2015
DOI: 10.12968/IJPN.2015.21.11.557
Abstract: Southern Adelaide Palliative Care Services introduced a nurse-led early introduction to a palliative care clinic in 2011. The clinic offers a thorough psychosocial assessment and the provision of information and an introduction to future care planning. The patients and their caregivers are seen together by the nurse practitioner initially for a physical assessment. They are then seen by a social worker to focus on advanced care planning and assessment of social and emotional factors. After the social work visit, the patient and caregiver are separated, and the patient sees the psychosocial nurse for coping and adjustment to illness and the carer sees the caregiver network facilitator to assess their informal supports to assist in the role of community-based caregiving. The pilot study looks at the nature of communication in the clinic where patient and carer are together and compares that to when they are separated. A total of 33 patients and their caregivers agreed for their coversations to be tape recorded between May and November of 2013. All tape recordings were transcribed verbatim. Ten patient transcripts (n=40) have been coded for quantitative analysis. The codes identify content and function of speech, cues for information and emotion and whether they are responded to by clinicians. Pilot results reveal that caregivers contribute little in the combined clinics and dominate the conversation in the private clinic. Patients, when seen alone, predominantly express emotion related cues, opposed to cues for information. The clinicians focus on their area of specialty, which results in little duplication in this clinic setting. An earlier evaluation of this clinic found that patients and their caregivers appreciate being separated in the clinic setting to have time and privacy to reveal fears and feelings related to end-of-life care. This current study quantifies the patient and caregiver experience and confirms those earlier findings.
Publisher: Mark Allen Group
Date: 02-03-2015
DOI: 10.12968/IJPN.2015.21.3.117
Abstract: Reports from patients on seeing or hearing a dead relative or dreaming a highly significant dream at the end of life can be perplexing for health professionals who may wonder how best to respond. The aim of this study was to systematically review the literature on deathbed phenomena (DBP), and provide suggestions for a clinical response to dying patients’ recounts of these hard-to-explain phenomena. The authors searched for relevant studies which reported on DBP within a palliative care context. Eligibility criteria were established, a review process was employed and a narrative synthesis approach was used to interpret the data. In total, eight papers met the inclusion criteria. Reported prevalence of DBP ranged from 24–51% with common themes described. Distinguishing between DBP and hallucinations was discussed, requiring very different clinical responses. Phenomena were timed most often in the last hours or days before death. Experiencing a DBP was, in most cases, deeply meaningful, bringing comfort, peace and reassurance. Health professionals were not surprised to hear of a DBP, but were not always well prepared to respond appropriately. Rather than simply dismissing DBP as medication related or the physiological effects of dying, the significance of these events and the comfort afforded by them to patients and carers should be recognised. Disclosure of DBP may enable health professionals to discuss more spiritual and existential concerns, which have the potential to offer hope, meaning and connection. We propose strategies and approaches for strengthening compassionate clinical practice in this area.
Publisher: Hawaii International Conference on System Sciences
Date: 2020
Publisher: Wiley
Date: 18-10-2013
DOI: 10.1111/AJAG.12083
Abstract: This study aimed to obtain perspectives from key stakeholders to inform the development of Australian national guidelines for a palliative approach to aged care in the community setting. A descriptive, exploratory qualitative design was used. S ling was purposive. Data were collected during audiotaped, semistructured, in idual and focus group interviews that addressed the need for the guidelines and aimed to identify practice areas for inclusion. Thematic analysis was undertaken. Interviews were conducted across Australia and included 172 participants: health-care providers, consumers, volunteers and researchers/educators. Themes emerging from the data were: Provision of a Palliative Approach in Community Aged Care, Carer Support, Advance Care Planning, Physical and Psychological Symptom Assessment and Management, Psychosocial Support, Spiritual Support, Issues for Aboriginal or Torres Strait Islander People, Older People from Diverse Cultural and Language Groups, and Clients with Special Needs. Findings underpinned development of new guideline documents.
Publisher: MDPI AG
Date: 31-08-2017
Publisher: SAGE Publications
Date: 26-03-2018
Abstract: A Massive Open Online Course, Dying2Learn, was designed to foster community death conversations and strengthen community awareness of palliative care and death as a normal process. This exploratory study used a pre–post prospective design to determine if participation in Dying2Learn and exposure to online conversations about death and dying resulted in any significant influence on death competence in 134 participants who completed the Coping-with-Death-Scale both at the beginning and end of the course in 2016. Death competence refers to a range of attitudes and capabilities people have for dealing with death. Results at the end of the course indicated that engagement in Dying2Learn led to significant improvements in death competence scores over time (medium-to-large effect size). The positive impact was greater for those who completed more of the course, and effectiveness did not depend on sociodemographic characteristics. In conclusion, this study found that an online learning platform in the form of a Massive Open Online Course could engage community members in meaningful social discussion about death and dying, and that exposure to these conversations was beneficial for all participants regardless of previous exposure to death. Further exploration is required to determine whether this change in death competence will have an impact on participant’s behavior in the community regarding death conversations and preparedness.
Publisher: SAGE Publications
Date: 24-02-2022
DOI: 10.1177/00302228221075283
Abstract: A Massive-Open-Online-Course (MOOC) on death and dying (Dying2Learn) was offered in 2020, designed to build conversations about death as a natural part of life. In week 1, the content focused on how today’s society engages with death through the language we use, humour, public mourning and funerals. This study investigated 2020 MOOC participants’ responses to an online activity reflecting on funerals and memorials during the time of COVID-19. From this activity, n = 204 responses were analysed qualitatively. Themes included the positives and negatives of virtual funeral attendance (e.g. opportunity to have a way to participate when travel barriers existed, versus a sense of impersonal voyeurism) and the challenges related to the inability to physically comfort the bereaved due to physical distancing requirements. Comments made as part of this MOOC activity provide a unique insight into the community’s experience of funeral changes necessitated by COVID-19, with important implications for the grieving process.
Publisher: CSIRO Publishing
Date: 06-02-2023
DOI: 10.1071/PY22178
Abstract: Background The Australian population is aging, and the proportion of older Australians will continue to grow over the coming decades. However, there is a lack of research published on the specific roles and responsibilities of allied health professionals (AHPs) providing palliative care within an aged care context. Understanding the roles and needs of AHPs providing care during the last months of life in the community and aged care facilities could contribute to workforce planning, targeted information and improved care. Methods In total, 108 eSurveys were collected between November 2019 to May 2020 from three allied health professions working in government-funded aged care the majority of these being in residential aged care. Descriptive data are reported on the provision of care in key palliative care domains, care settings and practice activity. Results Nearly all respondents reported they had worked with older Australians who had palliative care needs. However, over one-third of respondents reported low levels of confidence in supporting clients or residents with palliative care needs. The majority indicated they would benefit from additional education and training and support in palliative care. Conclusions This study investigated the role of the allied health workforce in contributing to the care of older Australians at the end of life. It has also demonstrated that there are gaps in practice activity and work role that must be addressed to ensure this workforce can support older people with palliative care needs in receipt of aged care services.
Publisher: AME Publishing Company
Date: 09-2019
Abstract: Complex social and ethical debates about voluntary assisted dying (euthanasia), palliative care, and advance care planning are presently being worked through in many developed countries, and the policy implications of these discussions for palliative care are potentially very significant. However, community attitudes to death and dying are complex, multilayered, and contain many mixed messages. Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn. This provided an opportunity to explore societal and personal attitudes to wishes and beliefs around death and dying. For one activity in the MOOC, participants responded to a question asking them about "the best way to go". Responses were subjected to thematic analysis, during which they were coded for conceptual categories. This analysis showed how acceptance of death as a natural and normal process, and as a shared event that affects a whole social network, may nonetheless be accompanied by deep reluctance to address the physical process of dying (i.e., "avoidant acceptance"). Our findings highlighted a desire for choice and control in relation to dying, which is a common element in discussions of both advance care planning and palliative care. This same focus may contribute to a perception that voluntary assisted dying/euthanasia is a necessary strategy for ensuring that people have control over their dying process. We discuss the paradox of in iduals wanting to have control whilst preferring not to know that they are dying.
Publisher: Flinders University
Date: 2022
DOI: 10.25957/8X3K-0588
Publisher: Springer Science and Business Media LLC
Date: 28-02-2017
Publisher: Ubiquity Press, Ltd.
Date: 2018
DOI: 10.5334/IJIC.3975
Publisher: Springer Science and Business Media LLC
Date: 11-03-2010
DOI: 10.1007/S00134-010-1821-9
Abstract: To establish the incidence and long-term prognosis of iatrogenic gas embolism. This was a prospective inception cohort. We included all consecutive adults with proven iatrogenic gas embolism admitted to the sole referral academic hyperbaric center in Paris. Treatment was standardized as one hyperbaric session at 4 ATA for 15 min followed by two 45-min plateaus at 2.5 then 2 ATA. Inspired fraction of oxygen was set at 100% during the entire e. Primary endpoint was 1-year mortality. All patients had evaluation by a neurologist, visual field tested by Goldman kinetic perimetry and brain MRI or CT scan at 6 months and 1 year. From January 1993 to August 2004, 125 of 4,727,496 hospitalizations had proven iatrogenic gas embolism. The crude mortality was 25/119 (21%) at 1 year. Cardiac arrest at time of accident and ICU admission, and SAPS II of 33 or more were independent prognostic factors of 1-year mortality (OR = 4.39, 95% CI 1.46-12.20 and OR = 6.30, 1.71-23.21, respectively). Among ICU survivors, independent predictors of 1-year mortality were age (OR = 1.07, 1.01-1.14), Babinski sign (OR = 6.58, 1.14-38.20) and acute kidney failure (OR = 8.09, 1.28-51.21). Focal motor deficits (OR = 12.78, 3.98-41.09) and Babinski sign (OR = 6.76, 2.24-20.33) on ICU admission, and duration of mechanical ventilation of 5 days or more (OR = 15.14, 2.92-78.52) were independent predictors of long-term sequels. Gas embolism complicates 2.65 per 100,000 hospitalizations, and is associated with high mortality and morbidity. Babinski sign on ICU admission is associated with poor prognosis.
Publisher: Sociedade Portuguesa de Medicina Interna
Date: 18-06-2021
DOI: 10.24950/PV/128/20/2/2021
Abstract: .
Publisher: SAGE Publications
Date: 08-07-2016
Abstract: Telehealth approaches to health care delivery can potentially improve quality of care and clinical outcomes, reduce mortality and hospital utilisation, and complement conventional treatments. However, substantial research into the potential for integrating telehealth within health care in Australia, particularly in the provision of services relevant to older people, including palliative care, aged care and rehabilitation, is lacking. Furthermore, to date, no discrete choice experiment (DCE) studies internationally have sought the views and preferences of older people about the basic features that should make up a telehealth approach to these services. Using a DCE, we investigated the relative importance of six salient features of telehealth (what aspects of care are to be pursued during telehealth sessions, distance to the nearest hospital or clinic, clinicians’ attitude to telehealth, patients’ experience of using technology, what types of assessments should be conducted face-to-face versus via telehealth sessions and the costs associated with receiving telehealth). Data were obtained from an online panel of older people aged 65 years and above, drawn from the Australian general population. The mean age for 330 study participants was 69 years. In general, in iduals expressed strong preferences for telehealth services that offered all aspects of care, were relatively inexpensive and targeted specifically at in iduals living in remote regions without easy access to a hospital or clinic. Participants also preferred telehealth services to be offered to in iduals with some prior experience of using technology, provided by clinicians who were positive about telehealth but wanted all or some pre-telehealth health assessments to take place in a hospital or clinic. Preferences only differed by gender. Additionally, respondents did not feel that telehealth led to loss of privacy and confidentiality. Our findings indicate a preference amongst respondents for face-to-face pre-telehealth health assessments and, thereafter, a comprehensive telehealth model (in terms of services offered) targeted at those with some technological know-how as a substitute for attendance at hospitals and clinics, especially where these health facilities were far away from older people’s homes. The findings may be usefully incorporated into the design of future telehealth models of service delivery for older people.
Publisher: BMJ
Date: 03-06-2022
DOI: 10.1136/BMJSPCARE-2022-003580
Abstract: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers’ confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role (2) the importance of a layered approach to support and (3) avoiding perceived unnecessary contact with nurses. The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.
Publisher: MDPI AG
Date: 21-04-2021
DOI: 10.3390/HEALTHCARE9050489
Abstract: As the population ages, the number of older populations globally requiring palliative care is rapidly growing, requiring services of multidisciplinary teams—including community pharmacists. The aim of this study is to describe the community pharmacists’ perceived role in providing services to community dwelling older Australians receiving palliative care. Utilising an eight-domain End of Life Directions for Aged Care (ELDAC) care model, a national cross-sectional questionnaire was designed and undertaken online with Australian community pharmacists. Respondents were asked questions relating to socio-demographic characteristics, practice characteristics, and scope of services provided. Of the 62 pharmacists who responded to the questionnaire, 51 were included in the final data analysis and reporting. Pharmacists working in dispensing roles made up about half of the respondents, while the remainder worked in settings such as general practice, residential aged care, or providing medication review services. Pharmacists can identify patients with indicators of poor life expectancy and mostly work with older Australians daily. Dispensing and non-dispensing pharmacists offer a range of services that complement each other. Organisations caring for the aged should consider the role of the pharmacist, in caring for people with palliative care needs, along with their carers.
Publisher: Wiley
Date: 02-2015
DOI: 10.1111/AJR.12168
Abstract: To examine and compare urban and rural palliative care service availability and patterns of care from randomised, population-based surveys of caregivers of people at the end of life. Survey responses on the death of 'someone close' from 23,588 interviews of South Australians conducted between 2001 and 2007 are analysed. A randomised population survey. Explored palliative care service availability, caregiving provided, and characteristics of the deceased and their caregivers. There was no difference in reported rates of accessing specialist palliative care services between rural and urban respondents (in unadjusted and adjusted analyses) nor did the proportion of people for whom cancer was their life-limiting illness. There was greater reliance on friends than first degree relatives in hands-on care provided at the end of life in rural settings. The rates of reported need for more support did not differ between urban and rural respondents for caregivers of people at the end of life. Use of palliative care services was similar for rural and urban caregivers for someone close at the end of life with similar levels of met and unmet needs.
Publisher: JMIR Publications Inc.
Date: 04-09-2014
DOI: 10.2196/RESPROT.3266
Publisher: SAGE Publications
Date: 27-03-2019
Abstract: Understanding current patterns of functional decline will inform patient care and has health service and resource implications. This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex. In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included. Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts. Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.
Publisher: OMICS Publishing Group
Date: 30-11-2012
Publisher: BMJ
Date: 06-2013
Publisher: Frontiers Media SA
Date: 06-09-2022
DOI: 10.3389/PHRS.2022.1604856
Abstract: Objectives: This scoping review identifies and details the scope of practice of health professionals who provide palliative care within the primary health setting in Australia. Methods: A scoping review approach was conducted on the Cinahl (Ebsco), Scopus, Medline (Ovid) and PubMed databases to extract articles from 1 December 2015 to 1 December 2020. Broad text words and MeSH headings were used with relevance to palliative care, general practice, primary health, and community setting. Extracted journal articles were limited to those based on the Australian population or Australian health system. Results: Eighty-four papers met the inclusion criteria and were included in the review. The review identified the following health professional roles within the Primary Health Care setting undertaking palliative care: General Practitioner, Nurse, Pharmacist, Paramedics, Carers, and Allied Health professionals. Conclusion: This review offers a first understanding of the in idual health professional roles and multidisciplinary team approach to actively providing palliative care within the Primary Health Care setting in Australia.
Publisher: Wiley
Date: 05-2019
DOI: 10.1111/AJAG.12661
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: Mary Ann Liebert Inc
Date: 07-2019
Publisher: CSIRO Publishing
Date: 20-05-2022
DOI: 10.1071/PY21084
Abstract: Background The impact of Australia’s erse population on the aged care sector has been acknowledged, with the Royal Commission into Aged Care Quality and Safety findings providing evidence of the importance of population ersity for consumer-directed and person-centred care. Similarly, the Aged Care Quality Standards and Aged Care Diversity Framework acknowledge the ersity of Australia’s ageing population and potential implications for equitable access to care and the ensuing importance of culturally appropriate and culturally safe care. This paper reports on the development of informational web pages and utilisation findings for use by the aged care workforce supporting erse populations. Methods Content was created for the End of Life Directions for Aged Care website, based on rapid review findings relating to barriers and limitations for people accessing equitable care in the aged care and palliative care sectors. Results Website pages containing embedded links to useful content and resources for health professionals and care workers who work with older erse adults are shown to be well received among users. Conclusions As Australia’s future population will age with increasing ersity markers, with implications for aged care and palliative care service provision, workforce access to up-to-date, relevant and evidence-informed information on best practice non-clinical support for in iduals from erse backgrounds towards the end of life promotes a person-centred care approach. Access data shows that the website content is being utilised increasingly over time and suggests that it is filling a gap in comprehensive and accessible end of life resources that have been missing from the Australian aged care and palliative care workforce.
Publisher: MDPI AG
Date: 16-04-2020
Abstract: The Dying2Learn massive open online course (MOOC) was a five-week course designed for the general community covering various topics related to death and dying, developed with a sociocultural focus that encouraged personal reflection and open discussion, rather than a medical or clinical focus. Yet, the majority of the participants identified as health care workers. Their motivations to enrolling in the course as well as their learning goals were examined. Responses to questions relating to their motivations for enrolment and learning goals were assigned codes and grouped into themes. We then made comparisons between the different demographic and occupational groups. The most commonly mentioned responses related to general interest in the topic of death and dying. HCWs were more likely to mention work-related motivations and improving communication skills than non-HCWs. We found that HCWs hoped to be better at talking about death and dying, which might indicate a possible gap in their formal education in this area.
Publisher: Elsevier BV
Date: 04-2015
DOI: 10.1016/J.JPAINSYMMAN.2014.09.018
Abstract: The challenges of palliative care clinical trial recruitment are well documented. The aim of the study was to review tested strategies to improve recruitment to trials of people with a range of conditions who may access palliative care services but are not explicitly stated to be "palliative." This was a systematic review with narrative description. The Cochrane, Embase, PubMed, PsycINFO, and CINAHL electronic databases were searched (English January 2002 to February 2014) for quasi-experimental and randomized controlled trials (RCTs) testing the effect of recruitment strategies on accrual to clinical trials of people with organ failure and cancer. Titles, abstracts, and retrieved articles were screened by two researchers and categorized by recruitment challenge: 1) patients with reduced cognition, 2) those requiring emergency treatment, and 3) willingness of patients and clinical staff to contribute to trials. Of 549 articles identified, 15 were included. Thirteen reported RCTs and two papers reported three quasi-experimental studies. Five were cluster RCTs of recruiting sites/institutions. One was a randomized cluster, crossover, feasibility study. Seven studies recruited patients with cancer. Others included patients with dementia, stroke, cardiovascular disease, diabetes, frail elderly, and bereaved carers. Some interventions improved recruitment: memory aid, contact before arrival, cluster consent, "opt out" consent. Others either reduced recruitment (formal mental capacity assessment) or made no difference (advance research directive a variety of educational, supportive, and advertising interventions). Successful strategies from other disciplines could be considered by palliative care researchers. Tailored, efficient, evidence-based strategies must be developed, acknowledging that strategies with face validity are not necessarily the most effective.
Publisher: SAGE Publications
Date: 2022
DOI: 10.1177/26323524221123344
Abstract: Death Doulas are working globally to provide non-medical end-of-life care. They have different training experiences and views on the role and whether it should be standardised. To seek the views of organisations responsible for training Death Doulas in order to determine what the drivers are behind this emerging role. We conducted an online survey with Death Doula training organisations in five countries utilising both a targeted and snowball approach. Qualitative analysis was undertaken with themes pre-determined (apriori) due to the nature of the survey categories. In total, representatives from 13 organisations in Australia, New Zealand, Sweden, Canada, United Kingdom, and United States responded. The organisations had provided training for 0 to 20 years, with one just starting and another training birth doulas and now expanding. Owners and trainers hold an array of qualifications such as academic, medical, non-medical, and life experience. Curricula have usually been developed locally, and not always included pedagogical consideration, a strategic business model, nor mapping processes such as gap analysis. The organisations are run similarly, and curricula have several consistent topics but with distinctly different approaches. Trainers’ views are also mixed about the way to proceed with registration of the Death Doula role. The contrasting views of training organisations explain much of the ambiguity of Death Doulas themselves regarding standardisation of registration, education and role enactment. If heading towards the ultimate goal of professionalisation of the role then a challenging path lies ahead with little in the way of agreement in what this would require.
Publisher: Mark Allen Group
Date: 02-07-2017
DOI: 10.12968/IJPN.2017.23.7.324
Abstract: A Massive Open Online Course (MOOC) on death and dying was conducted to open the dialogue around death and dying. In one activity, participants were asked to engage with language and to think of alternative words (or euphemisms) that are used to describe death. To reflect from a nursing perspective how language enables and sometimes disguises important messages and conversations. Four hundred and seventy one participants provided 3053 euphemisms. Euphemisms were varied, with many providing commentary on their purpose and use. As a society we have become quite creative in the use of euphemisms, but need to be mindful of misunderstandings and misinterpretations which can cause embarrassment and distress in clinical situations. This paper describes some of the euphemisms that were provided, examining why they are used and how their use can be easily misconstrued in daily life and in clinical practice.
Publisher: Public Library of Science (PLoS)
Date: 06-01-2021
DOI: 10.1371/JOURNAL.PONE.0242848
Abstract: Understanding public attitudes towards death is needed to inform health policies to foster community death awareness and preparedness. Linguistic sentiment analysis of how people describe their feelings about death can add to knowledge gained from traditional self-reports. This study provided the first description of emotive attitudes expressed towards death utilising textual sentiment analysis for the dimensions of valence, arousal and dominance. A linguistic lexicon of sentiment norms was applied to activities conducted in an online course for the general-public designed to generate discussion about death. We analysed the sentiment of words people chose to describe feelings about death, for themselves, for perceptions of the feelings of ‘others’, and for longitudinal changes over the time-period of exposure to a course about death ( n = 1491). The results demonstrated that sadness pervades affective responses to death, and that inevitability, peace, and fear were also frequent reactions. However, words chosen to represent perceptions of others’ feelings towards death suggested that participants perceived others as feeling more negative about death than they do themselves. Analysis of valence, arousal and dominance dimensions of sentiment pre-to-post course participation demonstrated that participants chose significantly happier (more positive) valence words, less arousing (calmer) words, and more dominant (in-control) words to express their feelings about death by the course end. This suggests that the course may have been helpful in participants becoming more emotionally accepting in their feelings and attitude towards death. Furthermore, the change over time appeared greater for younger participants, who showed more increase in the dominance (power/control) and pleasantness (valence) in words chosen at course completion. Sentiment analysis of words to describe death usefully extended our understanding of community death attitudes and emotions. Future application of sentiment analysis to other related areas of health policy interest such as attitudes towards Advance Care Planning and palliative care may prove fruitful.
Publisher: Springer Science and Business Media LLC
Date: 05-08-2008
Publisher: Elsevier BV
Date: 05-2014
DOI: 10.1053/J.AJKD.2013.12.007
Abstract: Recent clinical practice guidelines have highlighted the importance of advance care planning (ACP) for improving end-of-life care for people with chronic kidney disease (CKD). We conducted a systematic integrative review of the literature to inform future ACP practice and research in CKD, searching electronic databases in April 2013. Synthesis used narrative methods. We focused on adults with a primary diagnosis of CKD in any setting. We included studies of any design, quantitative or qualitative. ACP was defined as any formal means taken to ensure that health professionals and family members are aware of patients' wishes for care in the event they become too unwell to speak for themselves. Measures of all kinds were considered of interest. 55 articles met criteria reporting on 51 discrete s les. All patient s les included people with CKD stage 5 2 also included patients with stage 4. Seven interventions were tested all were narrowly focused and none was evaluated by comparing wishes for end-of-life care with care received. One intervention demonstrated effects on patient and family outcomes in the form of improved well-being and anxiety following sessions with a peer mentor. Insights from qualitative studies that have not been used to inform interventions include the importance of instilling patient confidence that their advance directives will be enacted and discussing decisions about (dis)continuing dialysis therapy separately from "aggressive" life-sustaining treatments (eg, ventilation). Although quantitative and qualitative findings were integrated according to best practice, methods for this are in their infancy. Research on ACP in patients with CKD is limited, especially intervention studies. Interventions in CKD should attend to barriers and facilitators at the levels of patient, caregiver, health professional, and system. Intervention studies should measure impact on compliance with patient wishes for end-of-life care.
Publisher: SAGE Publications
Date: 26-10-2016
Publisher: Springer Science and Business Media LLC
Date: 23-06-2023
DOI: 10.1186/S12904-023-01200-W
Abstract: The role of death doula has emerged in recent years, arguably as a result of overwhelming demands on carers, healthcare professionals and service providers in end-of-life care. Death doulas work independently without governing oversight and enact the role in various ways. The main driver of this evolving role is the organisations that train them. The aim of this study was to examine death doula training organisations’ views with regard to DD business models, incorporating the death doula role into other existing models of care, and role enactment. An electronic survey was administered to 15 death doula training organisations in 5 countries asking additionally that they disseminate the survey. Responses were received from 13 organisations, based in Australia (n = 4), the US (n = 4), Canada (n = 2), the UK (n = 1), Sweden (n = 1) and New Zealand (n = 1). This paper provides the qualitative findings from four open-text questions posed within the survey related to models of care. Qualitative data analysis was inductive, themes were determined in relation to: (1) standardised business model for death doulas, (2) death doulas incorporated into existing models of care or existing funding options, (3) death doulas who volunteer their services rather than charge money, and (4) role specialisation such as has occurred with birth doulas. The death doula role has the potential to be formally recognised in the future under national registration schemes, accompanied by death doula training required via certification. Until such time the death doula role will continue to evolve much as the birth doula role has, organically and unstructured. How and if death doulas are incorporated into existing models of health or social care remains to be seen as the organisations that train them push for independence, flexibility and fiscal independence.
Publisher: MDPI AG
Date: 13-12-2016
Publisher: JMIR Publications Inc.
Date: 25-05-2020
Abstract: ccess to evidence and practice knowledge is an important precursor to best practice health care. However, while availability is a requirement it is not necessarily sufficient to ensure reach into and uptake by intended audiences. Planning, implementing and evaluating engagement with intended audience’s offers one mechanism to identify ways that increased interaction and integration could be achieved. Since 2008, the CareSearch website has provided online palliative care evidence and information nationally in Australia to support health and aged care professionals, patients, carers and families to make informed decisions about care at the end of life. Having become an established presence in the palliative care sector, CareSearch is seeking to extend its reach, and ensure that the utility of the website is maximised for all target groups. As part of its deliverables cycle, CareSearch is undertaking a project to design, implement and evaluate a structured engagement activity in three different target groups (Aged care Allied health and Patients, carers and families). his paper describes the development of an evidence-based approach to understanding context to support a targeted engagement approach to influence reach and uptake of online resources. A mixed methods formative and summative evaluation study design for assessing the potential value of the approach has been developed. he project commenced with a design meeting between the CareSearch Director and an evaluation researcher about the purpose of the project, rationale for the intended audiences, and required outcomes specified in the grant application. A literature review of approaches used in knowledge translation, implementation science, politics and social marketing, was undertaken. The evaluation researcher then met to finalise the Engagement Framework and to formalise a template for documenting context based on relevant elements identified in the literature review. The proposed approach was then formally reviewed by the national CareSearch Advisory Group to determine face validity. n Engagement Framework comprising eight steps was developed. This outlines a series of tasks to be undertaken by the CareSearch Project staff working with the three target groups. A process/formative evaluation schedule was designed to collect data using qualitative methods to explore the experiences of participants, including staff implementing the engagement activities. Further details of the impact/summative evaluation will be formulated alongside the sector specific Action Plans and will include web metrics and qualitative feedback from stakeholders. The three target groups will enable a cross-case comparison approach. he use and impact of online resources often stops at web visits and page views. A structured approach to engagement with intended user groups may provide insights into how different groups find, use and value resources. >
Publisher: BMJ
Date: 03-2022
DOI: 10.1136/BMJOPEN-2021-057184
Abstract: Initiation of advance care planning (ACP) and palliative care (PC) assessments in general practice is key to quality end-of-life care. The Advance Project promotes a team-based approach to initiating ACP and PC needs assessment in general practices through training, resources and practical support for implementation from local primary health networks (PHNs). This paper aims to understand: (1) general practice participants’ experiences of undertaking Advance Project training and implementing the Advance Project resources in their practices (2) barriers and facilitators to implementation of Advance Project resources and (3) PHN staff experiences of supporting general practices through training and practical support for implementation of the Advance Project resources. Qualitative study using semistructured interviews and thematic analysis. Twenty-one general practices and four PHNs from three Australian states were recruited between June 2019 and May 2020. General practitioners (GPs), general practice nurses, practice managers (PMs) and PHN staff. 45 participants comprising 13 GPs, 13 general practice nurses, 9 PMs, 3 allied health staff and 7 PHN staff were interviewed. The general practice participants generally agreed that the Advance Project training/resources led to changes in their own behaviour and increased their awareness of the importance of ACP/PC discussion with their patients. Participants reported the following benefits for patients: increased awareness of ACP engagement with families/carers and peace of mind. Key facilitators for successful implementation were a team-based approach, the role of the PHN, the role of practice ch ions, training facilitators’ ability to influence peers and facilitate change, and mentoring support. Barriers to implementation included issues related to workplace culture, cost, time/workload, patients and health system. Findings suggest that the Advance Project approach facilitated successful implementation of ACP and PC needs assessment into usual care in general practices that encouraged teamwork among GPs and general practice nurses. The ability of the practice to make the best use of practical support and guidance available to them through their local PHN both before and during implementation was a key factor in integration of Advance Project resources into routine practice.
Publisher: Springer Science and Business Media LLC
Date: 20-02-2018
Publisher: Flinders University
Date: 2022
DOI: 10.25957/4JEV-SM25
Publisher: Hindawi Limited
Date: 25-08-2019
DOI: 10.1111/HSC.12833
Abstract: 'Death Doulas' have emerged as a relatively new role supporting dying people and their family members however there is a lack of clarity around how the role is enacted, and around the death doula role within health and social care systems. This study aimed to explore the ambiguity of the role of death doulas in end-of-life care including the skills, training and experience of death doulas how the role is communicated to the community and the relationships to palliative care providers and other health professionals. People identifying as death doulas were invited to participate in an online survey between April and June 2018. Ethical approval was obtained. A descriptive cross-sectional study was conducted, and purposive s ling was used to survey death doulas registered with death doula training organisations, newsletters and email distribution lists. Questions were based on the researchers' previous findings about the role. One hundred and ninety completed or partially completed surveys were received. Results showed ersity within, and some commonalities across the s le in terms of: training, experience and skills Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on health care professionals (including palliative care) at the end-of-life. They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don't have responsibility for. However, the roles and scope of practice of death doulas is not clear-cut even within their cohort, which can then make it hard for patients and families when choosing a death doula, especially as a lack of regulation and standardised training means that doulas are working without oversight, and often in isolation.
Publisher: SAGE Publications
Date: 19-09-2012
Abstract: Although the unit of care in palliative care is defined as the patient and their family, there are few rigorous studies on how to improve support for family and friends as they take on the role of caregiver for someone at the end of life. Separate to patient evaluation and care, this pilot study aimed to define the feasibility and possible outcome measures to evaluate routine assessments and supports specifically for caregivers. In a quasi-experimental design, two communities were included: one received standard specialist palliative care support and one additionally was allocated to a community network facilitator who assessed caregivers’ needs and helped mobilize the caregiver’s own support network or initiated contact with other community supports in three planned visits. Data were collected at baseline, 4 and 8 weeks using three caregiver assessment tools. Within group comparisons were made using Wilcoxon signed rank test and between group using the Mann–Whitney U-test. Sixty-six caregivers participated. At 8 weeks, participants in the intervention arm showed significant within-group improvement in caregiver fatigue, sufficient support from others, decreased resentment in the role, greater confidence in asking for assistance and were better able to find resources and support. No between-group changes were seen in this pilot study. There were objective measures of improved support within the intervention group over time for caregivers through the active engagement of the community network facilitator. This pilot supports the case for an adequately powered study.
Publisher: Flinders University
Date: 2022
DOI: 10.25957/96X6-MK19
Publisher: SAGE Publications
Date: 28-04-2009
Publisher: Mark Allen Group
Date: 02-10-2019
DOI: 10.12968/IJPN.2019.25.10.482
Abstract: CaseSearch ‘My Learning’ e-learning modules were designed to remind clinicians and practitioners about the role of evidence in practice and demonstrate how to find relevant evidence to make a difference in clinical care. This study aims to describe the role of the modules and their uptake, and determine whether the modules influenced the learners' palliative care practice and whether the modules were easy to use. Two sets of questions were designed to capture data to evaluate the modules. The modules supported the awareness and use of evidence by health professionals. The modules contribute to ongoing professional development for practitioners and can improve palliative care practice. It is possible to collect meaningful data that contributes to understanding who uses e-learning resources and how useful healthcare professionals find them.
Publisher: Springer Science and Business Media LLC
Date: 21-01-2020
DOI: 10.1186/S12874-020-0901-Y
Abstract: Integrated care is an increasingly important principle for organising healthcare. Integrated care models show promise in reducing resource wastage and service fragmentation whilst improving the accessibility, patient-centredness and quality of care for patients. Those needing reliable access to the growing research evidence base for integrated care can be frustrated by search challenges reflective of the topic’s complexity. The aim of this study is to report the empirical development and validation of two search filters for rapid and effective retrieval of integrated care evidence in PubMed. One filter is optimised for recall and the other for precision. An Expert Advisory Group comprising international integrated care experts guided the study. A gold standard test set of citations was formed from screening Handbook Integrated Care chapter references for relevance. This set was ided into a Term Identification Set (20%) for determining candidate terms using frequency analysis a Filter Development Set (40%) for testing performance of term combinations and a Filter Validation Set (40%) reserved for confirming final filter performance. In developing the high recall filter, recall was steadily increased while maintaining precision at ≥50%. Similarly, the high precision filter sought to maximise precision while keeping recall ≥50%. For each term combination tested, an approximation of precision was obtained by reviewing the first 100 citations retrieved in Medline for relevance. The gold standard set comprised 534 citations. The search filter optimised for recall (‘Broad Integrated Care Search’) achieved 86.0–88.3% recall with corresponding low precision (47–53%). The search filter optimised for precise searching (‘Narrow Integrated Care Search’) demonstrated precision of 73–95% with recall reduced to between 55.9 and 59.8%. These filters are now available as one-click URL hyperlinks in the website of International Foundation for Integrated Care. The Broad and Narrow Integrated Care Search filters provide potential users, such as policy makers and researchers, seamless, reliable and ongoing access to integrated care evidence for decision making. These filters were developed according to a rigorous and transparent methodology designed to circumvent the challenges of information retrieval posed by this complex, multifaceted topic.
Publisher: ACM
Date: 23-03-2020
Publisher: CSIRO Publishing
Date: 2013
DOI: 10.1071/PY13030
Abstract: The aim of this systematic review was to identify types of approaches and methods used to evaluate the effectiveness of healthcare information websites. Simple usage data may not be sufficient to assess whether desired healthcare outcomes were achieved or to determine the relative effectiveness of different web resources on the same health topic. To establish the state of the knowledge base on assessment methods used to determine the effectiveness of healthcare websites, a structured search of the literature was conducted in Ovid Medline, resulting in the retrieval of 1611 articles, of which 240 met the inclusion criteria for the present review. The present review found that erse evaluation methods were used to measure the effectiveness of healthcare websites. These evaluation methods were used during development, before release and after release. Economic assessment was rare and most evaluations looked at content issues, such as readability scores. Several studies did try to assess the usefulness of websites, but few studies looked at behaviour change or knowledge transfer following engagement with the designated health website. To assess the effectiveness of the knowledge transfer of healthcare information through the online environment, multiple methods may need to be used to evaluate healthcare websites and may need to be undertaken at all stages of the website development process.
Publisher: JMIR Publications Inc.
Date: 11-11-2020
Abstract: s the use of technology to deliver health services is increasing rapidly and has further intensified during the COVID-19 pandemic, these initiatives may fail if ethical impacts are not fully identified and acted upon by practitioners. Ignoring the ethical impacts of information and communication technology health service delivery creates an unintended risk for patients and can lead to reduced effectiveness, noncompliance, and harm, undermining the best intentions of governments and clinicians. ur aim was to explore how ethical considerations or impacts may be different, greater, or more variable in information and communication technology methods versus face-to-face health care delivery models, and how they may be applied in practice. e undertook a systemic literature review to provide a critical overview of existing research into the incorporation of ethical principles into telehealth practice. Six databases were searched between March 2016 to May 2016 and again in December 2020 to provide the benefit of currency. A combination of broad terms (“ethics,” “ethical,” “health,” and “care”) with the restrictive terms of “telehealth” and “telemedicine” was used in keyword searches. Thematic analysis and synthesis of each paper was conducted, aligned to the framework developed by Beauch and Childress. rom the 49 papers reviewed, authors identified or discussed the following ethical principles in relation to telehealth practice: autonomy (69% of authors, 34/49), professional–patient relationship (53% of authors, 26/49), nonmaleficence (41% of authors, 20/49), beneficence (39%, of authors, 19/49), and justice (39% of authors, 19/49). lthough a small number of studies identified ethical issues associated with telehealth practice and discussed their potential impact on service quality and effectiveness, there is limited research on how ethical principles are incorporated into clinical practice. Several studies proposed frameworks, codes of conduct, or guidelines, but there was little discussion or evidence of how these recommendations are being used to improve ethical telehealth practice.
Publisher: SAGE Publications
Date: 2022
DOI: 10.1177/20552076211070394
Abstract: We undertook a qualitative study to examine and compare the experience of ethical principles by telehealth practitioners and patients in relation to service delivery theory. The study was conducted prior to and during the recent global increase in the use of telehealth services due to the COVID-19 pandemic, We conducted semi-structured interviews with 20 telehealth practitioners and patients using constructionist grounded theory methods to collect and analyse data. Twenty-five axial coded data categories were then unified and aligned through selective coding with the Beauch and Childress (2013) framework of biomedical ethics. The groups were then compared. Thirteen categories aligned to the ethical framework were identified for practitioners and 12 for patients. Variance existed between the groups. Practitioner results were non-maleficence 4/13 or (31%), beneficence 4/13 (31%), professional–patient relationships 3/12 (22%), autonomy 1/13 (8%) and justice 1/13 (8%). Patient data results were non-maleficence 4/12 (33%), professional–patient relationships 3/12 (33%), autonomy 2/12 (18%), beneficence 1/12 (8%) and justice 1/12 (8%). Ethical principles are experienced differently between telehealth practitioners and patients. These differences can impact the quality and safety of care. Practitioners feel telehealth provides better care overall than patients do. Patients felt telehealth may force a greater share of costs and burdens onto them and reduce equity. Both patients and practitioners felt telehealth can be more harmful than face-to-face service delivery when it creates new or increased risk of harms. Building sufficient trust and mutual understanding are equally important to patients as privacy and confidentiality.
Publisher: MDPI AG
Date: 30-11-2018
DOI: 10.3390/BS8120111
Abstract: Few previous studies have formally examined people’s wishes regarding what they want to do before they die. This study aimed to describe responses to an activity within a Massive Open Online Course (MOOC) where people considered what was important when faced with their own mortality. We asked participants to complete the following: “Before I Die, I want to…”. The content of participants’ responses (n = 633) was analysed qualitatively with a coding schema developed and then applied. All authors independently coded the first 100 “Before I Die” statements, followed by a second round of coding where themes were verified and confirmed. Following this, two independent raters coded all 633 responses, obtaining 95.24% agreement (Cohen’s Kappa = 0.789, p 0.0005). Twelve themes emerged from the data: family do an activity personal aspiration live life fully, happiness love the greater good peace legacy gratitude religion and health. Responses could also be distinguished as being inward-facing (about the self), and outward-facing (about others). Reflecting on what is important and on what a person wishes to achieve or address before they die can be seen as a companion process to advance care planning which addresses what an in idual wants to plan to manage their actual death.
Publisher: Mark Allen Group
Date: 02-07-2014
DOI: 10.12968/IJPN.2014.20.7.349
Abstract: Palliative care services are increasingly identifying areas for improvement, then trying to create appropriate changes in response. Nurses in particular are often expected to take leading roles in quality improvement (QI) but are not necessarily trained or supported in these processes. A framework approach to change was developed to guide services through a change cycle and delivered via workshops by representatives of three Australian national projects. Participants were predominantly nurses (80%), with the majority (63.7%) over the age of 50. The workshops and the framework were positively evaluated, with participants feeling confident in a number of QI-related activities following workshop training. Recognising and addressing problems in clinical practice and service delivery is an important way for nurses to ensure quality care for patients however, they need support in developing the skills and knowledge that are essential to successful QI activities.
Publisher: Cambridge University Press (CUP)
Date: 22-01-2019
DOI: 10.1017/S1478951518000937
Abstract: Understanding factors that are associated with more adaptive death attitudes and competencies can inspire future health-promoting palliative care strategies and inform approaches to training and development for health professionals. The potential importance of meaning, purpose, quality, and values in life for promoting adaptive death attitudes has been highlighted, but there is limited research in this area, particularly in relation to death competence. The purpose of this cross-sectional study was to develop an understanding of demographic and life-related factors associated with perceived death competence, such as meaning in life and quality of life. During the course enrollment period of a Massive-Online-Open-Course about death and dying, 277 participants completed questionnaires on death competence, meaning in life, quality of life, and sociodemographic background. Findings indicated that greater presence of meaning in life, quality of life, age, death experience, and carer experience were each statistically significant unique predictors of death competence scores. Life-related variables were more strongly associated with death competence than demographic variables. Bereavement experience and experience caring for the dying was associated with greater death competence, but there were no differences on death competence between health professionals and the general community. Above all other factors, the presence of meaning in life was the strongest predictor of higher perceived competence in coping with death. The findings demonstrate important interconnections between our attitudes about life and death. Knowledge of factors associated with poorer death competence may help identify those at risk of greater distress when facing death, and might prove useful additions to bereavement risk assessments. Understanding factors associated with greater death competence in health professionals and volunteers may help predict or prevent burnout and compassion fatigue, and help identify who would benefit from additional training and support. Future longitudinal studies including both health professionals and the general community are needed to determine the effect adaptive attitudes toward meaning in life can potentially have on bolstering subsequent adaptive coping and competence regarding death and dying.
Publisher: Springer Science and Business Media LLC
Date: 16-06-2022
DOI: 10.1186/S12904-022-00997-2
Abstract: Inequity in access to palliative care and symptom relief is one of the greatest disparities in global health care. A public health approach to palliative care is underpinned by the social view of health that puts an emphasis on equity, community engagement and empowerment, a supportive policy environment, and social determinants of health. Consideration of equity in policy is critical so that it can be translated into equitable services. However, the extent to which Australian palliative care policies incorporate equity, and their translation into actual actions have not been extensively examined. This exploratory study aimed to examine the extent to which Australian federal and South Australian palliative care policies and initiatives incorporate equity, and to identify evidence gaps and research priorities that can inform equity-oriented policies and practices. We reviewed 25 federal and South Australian documents relating to palliative care published over the past five years. Documents were publicly available from the Australian Government Department of Health website. We used search filter ‘Palliative care and end of life’ in the Department’s resource webpage to narrow down documents to those with palliative care and end of life in the document title and/or content. The initial list was discussed in the research team to ensure key documents are included. Supplementary to document review, we conducted five key informant interviews in South Australia. Interview participants were people from the policy sector, not-for-profit organisations, a funding body and a community advocacy group in South Australia who had knowledge and experience in palliative care policy, practice and research. Documents and interview transcripts were imported into the NVivo 12 software for coding. Content analysis looked at the frequencies of relevant terms, and then more detailed inductive and deductive thematic analysis was undertaken which was guided by an equity action framework. Overall, we found incremental steps forward over the past few years in considering equity in Australian palliative care policies. Key themes that emerged from the study were: identifying population groups experiencing poor access to palliative care, strategies to improve access including increased awareness of palliative care, flexible models of care, building workforce capacity, and the need for greater investment in palliative care research and evaluation. Strategies to address systemic barriers as well as social, political and cultural determinants of inequity was less evident in policy documents. There was little evidence of actions to engage and empower communities. Interviews provided insight on key areas of priority for future palliative care research. Achieving the goal of equity in palliative care for all is complex and multifaceted. It requires strong commitment and actions at policy and government level but also in clinical practice, workforce planning and capacity building, community engagement and research investment to implement and evaluate public health approaches to palliative care.
Publisher: Hindawi Limited
Date: 26-09-2018
DOI: 10.1111/HSC.12660
Abstract: Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been working with women during pregnancy and after birth for many years, and we are now seeing a new role, that of a Death Doula emerging in the end-of-life care space. How Death Doulas work within health and social care systems is not understood and we conducted a systematic review to explore the published literature to explore the role and potential implications for models of care delivery. Following the PRISMA recommendations, we searched the literature in January 2018 via bibliographic databases and the grey literature without search date parameters to capture all published literature. We looked for articles that describe the role/work of a death doula or a death midwife in the context of end-of-life care, or death and dying. Our search retrieved 162 unique records of which five papers were included. We analysed the papers in relation to relationship to health service, funding source, number and demand for services, training, licensing and ongoing support, and tasks undertaken. Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of "an eldest daughter" or to a role that has similarities to specialist palliative care nurses. Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight.
Publisher: American Medical Association (AMA)
Date: 27-01-2010
DOI: 10.1001/JAMA.2010.2
Abstract: Corticosteroid therapy induces potentially detrimental hyperglycemia in septic shock. In addition, the benefit of adding fludrocortisone in this setting is unclear. To test the efficacy of intensive insulin therapy in patients whose septic shock was treated with hydrocortisone and to assess, as a secondary objective, the benefit of fludrocortisone. A multicenter, 2 x 2 factorial, randomized trial, involving 509 adults with septic shock who presented with multiple organ dysfunction, as defined by a Sequential Organ Failure Assessment score of 8 or more, and who had received hydrocortisone treatment was conducted from January 2006 to January 2009 in 11 intensive care units in France. Patients were randomly assigned to 1 of 4 groups: continuous intravenous insulin infusion with hydrocortisone alone, continuous intravenous insulin infusion with hydrocortisone plus fludrocortisone, conventional insulin therapy with hydrocortisone alone, or conventional insulin therapy with intravenous hydrocortisone plus fludrocortisone. Hydrocortisone was administered in a 50-mg bolus every 6 hours, and fludrocortisone was administered orally in 50-microg tablets once a day, each for 7 days. In-hospital mortality. Of the 255 patients treated with intensive insulin, 117 (45.9%), and 109 of 254 (42.9%) treated with conventional insulin therapy died (relative risk [RR], 1.07 95% confidence interval [CI], 0.88-1.30 P = .50). Patients treated with intensive insulin experienced significantly more episodes of severe hypoglycemia (<40 mg/dL) than those in the conventional-treatment group, with a difference in mean number of episodes per patient of 0.15 (95% CI, 0.02-0.28 P = .003). At hospital discharge, 105 of 245 patients treated with fludrocortisone (42.9%) died and 121 of 264 (45.8%) in the control group died (RR, 0.94 95% CI, 0.77-1.14 P = .50). Compared with conventional insulin therapy, intensive insulin therapy did not improve in-hospital mortality among patients who were treated with hydrocortisone for septic shock. The addition of oral fludrocortisone did not result in a statistically significant improvement in in-hospital mortality. clinicaltrials.gov Identifier: NCT00320099.
Publisher: Springer Science and Business Media LLC
Date: 17-11-2016
Publisher: MDPI AG
Date: 18-05-2021
DOI: 10.3390/HEALTHCARE9050600
Abstract: Access to evidence and practice knowledge precedes use, but availability does not guarantee reach and uptake by intended audiences. The CareSearch project provides online palliative care evidence and information to support health and aged care professionals as well as patients, carers and families to make informed decisions about care at the end of life. Already established in the palliative care sector, CareSearch commenced planning to extend its reach, and ensure website use is maximised for different audiences. This paper reports on the development of the Engagement Framework which will be used to guide and deliver an Engagement Project which will actively seek feedback and insights from intended users in a structured process. The process for developing the Engagement Framework commenced with a literature review of approaches used in knowledge translation, implementation science, and social marketing. The Engagement Framework comprising eight steps was then developed. The Engagement Framework outlines the series of tasks to be undertaken by team members when working with three target groups (Aged Care Allied Health and Patients, Carers and Families). A process/formative evaluation collecting data using qualitative methods is also described for use in the subsequent Engagement Project. The evaluation will explore the experiences of project participants as well as staff implementing the engagement activities. The three target groups will enable a cross-case comparison of the strengths and weaknesses of the approach. Planning, implementing and evaluating engagement with intended audiences, offers one mechanism to identify ways to increase interaction and integration with knowledge users.
Publisher: MDPI AG
Date: 28-09-2019
DOI: 10.3390/HEALTHCARE7040112
Abstract: CareSearch is an Australian Government Department of Health funded repository of evidence-based palliative care information and resources. The CareSearch Allied Health Hub was developed in 2013 to support all allied health professionals working with palliative care clients in all clinical settings. This cross-sectional online survey sought to elicit allied health professionals palliative care experiences and subsequent considerations for educational and clinical practice needs. The survey was disseminated nationally via a range of organisations. Data was collected about palliative care knowledge, experience working with palliative care clients and professional development needs. Data were evaluated by profession, experience and practice setting. In total, 217 respondents answered one or more survey questions (94%). Respondents (65%) reported seeing palliative care clients per month with 84% seen in hospital and community settings. Undergraduate education underprepared or partially prepared allied health professionals to work with these clients (96%) and 67% identified the need for further education. Access to postgraduate professional development was limited by available backfill and funding. Study findings support the importance of free, accessible, relevant educational and professional development resources to support clinical practice. This is particularly relevant for allied health professionals who have limited opportunities to attend formal professional development sessions.
Publisher: Elsevier BV
Date: 05-2021
Publisher: Wiley
Date: 20-11-2014
DOI: 10.1111/HIR.12087
Abstract: The evidence base developed by, and relevant to, primary health care (PHC) is rapidly increasing. With the wealth of literature available, searchers trying to find PHC-specific citations can feel overwhelmed. Flinders Filters and the Primary Health Care Research & Information Service collaborated to develop a search filter enabling efficient and effective retrieval of relevant PHC literature. Stage 1 involved developing a PHC Search Filter in the OvidSP Medline platform using a rigorous experimental methodology. The search filter was then translated for Web-based 'one-click searching' in PubMed during Stage 2. Stage 3 involved planning and implementing a mixed-methods evaluation. The search filter sensitivity was 77.0% with a post hoc relevance assessment of 78.3%. Four months after its launch, a mixed-methods study evaluated the PHC Search Filter. With 90 respondents, analysis of data from the online survey demonstrated overarching benefits, a positive response to the tool and directions for further refinement of the PHC Search Filter. Designing the PHC Search Filter followed an established method that ensures the tool offers a validated search strategy. Evaluation results suggest that the PHC Search Filter is a useful tool that is easy to navigate. Challenges for the Filter relate to access to full text articles, while challenges for the evaluation relate to the small s le size. The PHC Search Filter reduces the burden associated with literature searching, increases the value of the results that are received and provides a useful resource to improve the likelihood of incorporating relevant evidence into policy and practice.
Publisher: Wiley
Date: 21-08-2015
DOI: 10.1111/HIR.12120
Abstract: Health professionals must be able to search competently for evidence to support practice. We sought to understand how palliative care clinicians construct searches for palliative care literature in PubMed, to quantify search efficacy in retrieving a set of relevant articles and to compare performance against a Palliative CareSearch Filter (PCSF). Included studies from palliative care systematic reviews formed a test set. Palliative care clinicians (n = 37) completed a search task using PubMed. In idual clinician searches were reconstructed in PubMed and combined with the test set to calculate retrieval sensitivity. PCSF performance in the test set was also determined. Many clinicians struggled to create useful searches. Twelve used a single search term, 17 narrowed the search inappropriately and 8 confused Boolean operators. The mean number of test set citations (n = 663) retrieved was 166 (SD = 188), or 25% although 76% of clinicians believed they would find more than 50% of the articles. Only 8 participants (22%) achieved this. Correlations between retrieval and PubMed confidence (r = 0.13) or frequency of use (r = -0.18) were weak. Many palliative care clinicians search PubMed ineffectively. Targeted skills training and PCSF promotion may improve evidence retrieval.
Publisher: CSIRO Publishing
Date: 06-08-2021
DOI: 10.1071/PY20164_CO
Abstract: This study assessed Australian clinical practice guidelines for life-limiting index conditions for the extent to which they acknowledged comorbidities and framed management recommendations within the context of older age and reduced life expectancy. A comprehensive search identified current, evidence-based Australian guidelines for chronic life-limiting conditions directed at general practitioners. Guideline content was analysed qualitatively before comorbidity acknowledgements were quantified using a 17-item checklist. Full guidelines were quality appraised using AGREE-II. Ten documents covering chronic obstructive pulmonary disease, heart failure, cancer pain, dementia and palliative care in aged care were identified. Most guidelines addressed one & #x2018 comorbid& #x2019 condition and prompted clinicians to consider patient quality of life and personal preferences. Fewer addressed burden of treatment and half suggested modifying treatments to account for limited life expectancy, age or time horizon to benefit. Half warned of potential adverse drug interactions. Guidelines were of moderate to very high quality. Guidelines naturally prioritised their index condition, directing attention to only the most common comorbidities. However, there may be scope to include more condition-agnostic guidance on multimorbidity management. This might be modelled on the & #x2018 guiding principles& #x2019 approach now emerging internationally from organisations such as the American Geriatrics Society in response to increasing multimorbidity prevalence and evidence limitations.
Publisher: Wiley
Date: 21-12-2019
DOI: 10.1111/HIR.12244
Abstract: Searching for topics within large biomedical databases can be challenging, especially when topics are complex, diffuse, emerging or lack definitional clarity. Experimentally derived topic search filters offer a reliable solution to effective retrieval however, their number and range of subject foci remain unknown. This systematic scoping review aims to identify and describe available experimentally developed topic search filters. Reports on topic search filter development (1990-) were sought using grey literature sources and 15 databases. Reports describing the conception and prospective development of a database-specific topic search and including an objectively measured estimate of its performance ('sensitivity') were included. Fifty-four reports met inclusion criteria. Data were extracted and thematically synthesised to describe the characteristics of 58 topic search filters. Topic search filters are proliferating and cover a wide range of subjects. Filter reports, however, often lack clear definitions of concepts and topic scope to guide users. Without standardised terminology, filters are challenging to find. Information specialists may benefit from a centralised topic filter repository and appraisal checklists to facilitate quality assessment. Findings will help information specialists identify existing topic search filters and assist filter developers to build on current knowledge in the field.
Publisher: CSIRO Publishing
Date: 12-09-2023
DOI: 10.1071/AH23166
Publisher: Elsevier BV
Date: 02-2015
Publisher: Flinders University
Date: 2022
DOI: 10.25957/2VSZ-MW59
Publisher: Center for Open Science
Date: 27-12-2019
Abstract: The mission of learning analytics (LA) is to improve learner experiences using the insights from digitally collected learner data. While some areas of LA are maturing, this is not consistent across all LA specialisations. For instance, LA for social learning lack validated approaches to account for the effects of cross-course variability in learner behavior. Although the associations between network structure and learning outcomes have been examined in the context of online forums, it remains unclear whether such associations represent bona fide social effects, or merely reflect heterogeneity in in idual posting behavior, leading to seemingly complex but artefactual social network structures. We argue that to start addressing this issue, posting activity should be explicitly included and modelled in forum network representations. To gain insight to what extent learner degree and edge weight are merely derivatives of learner activity, we construct random models that control for the level of posting and post properties, such as popularity and thread hierarchy level. Analysis of forum networks in twenty online courses presented in this paper demonstrates that in idual posting behavior is highly predictive of both the breadth (degree) and frequency (strength) in forum communication networks. This implies that, in the context of forum-based modelling, degree and frequency may not reflect the social dynamics. However, results suggest that clustering of the network structure is not a derivative of in idual posting behaviour. Hence, weighted local clustering coefficient may be a better proxy for social relationships. The empirical results are relevant to scientists interested in social interactions and learner networks in digital learning, and more generally to researchers interested in deriving informative social network models from online forums.
Publisher: MDPI AG
Date: 05-03-2023
Abstract: User-based evaluation by end users is an essential step in designing useful interfaces. Inspection methods can offer an alternate approach when end-user recruitment is problematic. A Learning Designers’ usability scholarship could offer usability evaluation expertise adjunct to multidisciplinary teams in academic settings. The feasibility of Learning Designers as ‘expert evaluators’ is assessed within this study. Two groups, healthcare professionals and Learning Designers, applied a hybrid evaluation method to generate usability feedback from a palliative care toolkit prototype. Expert data were compared to end-user errors detected from usability testing. Interface errors were categorised, meta-aggregated and severity calculated. The analysis found that reviewers detected N = 333 errors, with N = 167 uniquely occurring within the interface. Learning Designers identified errors at greater frequencies (60.66% total interface errors, mean (M) = 28.86 per expert) than other evaluator groups (healthcare professionals 23.12%, M = 19.25 and end users 16.22%, M = 9.0). Patterns in severity and error types were also observed between reviewer groups. The findings suggest that Learning Designers are skilled in detecting interface errors, which benefits developers assessing usability when access to end users is limited. Whilst not offering rich narrative feedback generated by user-based evaluations, Learning Designers complement healthcare professionals’ content-specific knowledge as a ‘composite expert reviewer’ with the ability to generate meaningful feedback to shape digital health interfaces.
Publisher: CSIRO Publishing
Date: 2017
DOI: 10.1071/PY16001
Abstract: Benefits of case conferencing for people with palliative care needs between a general practitioner, the person and other key participants include improving communication, advance care planning, coordination of care, clarifying goals of care and support for patient, families and carers. Despite a growing evidence base for the benefits, the uptake of case conferencing has been limited in South Australia. The aim of this study is to explore the beliefs and practice of South Australian general practitioners towards case conferencing for people with palliative care needs. Using an online survey, participants were asked about demographics, attitudes towards case conferencing and details about their most recent case conference for a person with palliative care needs. Responses were received from 134 general practitioners (response rate 11%). In total, 80% valued case conferencing for people with palliative care needs however, % had been involved in case conferencing in the previous 2years. The major barrier was time to organise and coordinate case conferences. Enablers included general practitioner willingness or interest, strong relationship with patient, specialist palliative care involvement and assistance with organisation. Despite GPs’ beliefs of the benefits of case conferencing, the barriers remain significant. Enabling case conferencing will require support for organisation of case conferences and review of Medicare Benefits Schedule criteria for reimbursement.
Publisher: Scientific Research Publishing, Inc.
Date: 2015
Publisher: SAGE Publications
Date: 2008
Publisher: CSIRO Publishing
Date: 2012
DOI: 10.1071/PY11103
Abstract: Palliative care is an integral part of the care provided by GPs and other primary health care providers, and as Australia’s population ages and the palliative care needs of patients with end stage organ failure are recognised, this area of care is likely to increase. Using a knowledge translation framework, two strategies have been used to develop resources to support those providing palliative care in the community. PubMed searches on a range of common palliative care topics and incorporating a palliative care filter provide an easy and validated mechanism to retrieve relevant literature. A ‘GP Hub’ offers knowledge, skills and practical advice for GPs who provide palliative care in the community. Both resources are freely available within the CareSearch website, ensuring immediate access to palliative care information and evidence when it is needed.
Publisher: Informa UK Limited
Date: 20-01-2022
Publisher: MDPI AG
Date: 06-08-2020
DOI: 10.3390/HEALTHCARE8030254
Abstract: Providing quality care for those dying in hospital is challenging for health professionals who receive little training in this. “End of Life Essentials” (EOLE) was developed to address gaps in health professionals’ knowledge, skills and confidence in end-of-life care via the provision of online learning modules and practice resources. This study aimed to determine whether respondents could describe clinical practice change as a result of module completion. Deidentified data were collected between October and November 2018 from learners registered for the online learning modules. Both quantitative and qualitative data were extracted and analysed. The survey design and conduct were reviewed, and ethical approval was obtained. Although the response rate was very low, results from n = 122 learners show improvements in knowledge, skills, awareness and confidence as a result of the undertaking of the learning modules. Two thirds self-reported practice changes (71%, n = 59) following the education, with “communication” cited most commonly (n = 19). The findings suggest that the EOLE education modules can help to improve end-of-life care by increasing health professionals’ awareness of good practice as well as their knowledge, skills and confidence. Online learning has also been reinforced as an appropriate forum for end-of-life education. Following education, implementing what has been learned occurs more easily at a personal level rather than at a team and organisational level. Barriers to and enablers of clinical practice change in hospital are described, including the fact that the organisation may not be responsive to changes or have the relevant resources to support change.
Publisher: SAGE Publications
Date: 06-2010
Publisher: Springer Science and Business Media LLC
Date: 20-07-2023
DOI: 10.1186/S12904-023-01225-1
Abstract: Most people living with a terminal illness and approaching death will need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional, and practical caring supports. A significant portion of these carers can feel overwhelmed, isolated and experience psychological and/or financial distress. Carers can have unmet information needs and information needs can change across the caring period. Guided by an Australian National Reference Group, this project undertook a multiphase set of activities to enable the development of an online carer resource. These activities included a literature review of key issues and considerations for family carers supporting someone with a terminal illness, a scoping scan of existing online resources, and interviews and focus groups with eighteen carers to understand their needs and context of caring. This information formed the basis for potential digital content. A web project team was established to create the information architecture and content pathways. User testing survey and usability assessment of the CarerHelp Website was undertaken to assess/optimise functionality prior to release. An evaluation process was also devised. The literature review identified carer needs for practical and psychological support along with better education and strategies to improve communication. The scoping scan of available online resources suggested that while information available to carers is plentiful, much of that which is provided is general, disparately located, inadequately detailed, and disease specific. The eighteen carers who were interviewed highlighted the need for helpful information on: services, symptom management, relationships, preparation for death, managing the emotional and psychological burden that often accompanies caring, and support during bereavement. User testing and usability assessment of the prototype resource led to changes to enhance the user experience and effectiveness of navigation. It also highlighted a lack of awareness of existing resources and the needs of marketing and communication to address this problem. The project led to the development of an open access online resource, CarerHelp ( www.carerhelp.com.au ), for use by carers and families caring for a person who has palliative care needs. The web metrics demonstrate substantial use of the resources.
Publisher: Springer Science and Business Media LLC
Date: 07-08-2021
DOI: 10.1186/S12904-021-00822-2
Abstract: While the need for digital health capability and technological innovation in palliative care services is growing rapidly, relatively little is known about the current uptake and views of in idual palliative care practitioners. This study aims to explore palliative care practitioners’ current use of and perspectives on digital health innovation in palliative care. A descriptive cross-sectional survey with a web-based questionnaire was used. Participants were multidisciplinary palliative care practitioners in Australia. Surveys were returned by 170 medical, nursing, and allied health practitioners working in palliative care. Most respondents reported using a variety of digital health technology associated with clinical information systems, mobile devices, SMS text messaging, teleconferencing, and Wi-Fi. These technologies were used for the purpose of communicating with other health professionals, accessing web-based or mobile health palliative care resources, collecting or managing patient data, and providing information or education. However, few reported electronic access to patients’ advance care planning documentation or could update these data. Respondents were moderately confident in their ability to use digital health, held positive beliefs that palliative care could be enhanced through digital health, and were generally supportive of ongoing innovation through digitally-enable models of care. Palliative care providers would most like to see digital health innovations in the areas of client health records, telehealth, and personal health tracking. This is the first national study of digital health in Australian palliative care providers. It contributes new knowledge in this important area of palliative care practice to guide policy and education, whilst informing future directions for research.
Publisher: Oxford University Press (OUP)
Date: 05-09-2023
Abstract: Multimorbidity is prevalent in general practice and general practitioners internationally report challenges in its management. Understanding the perspectives of general practitioners at the frontline of care is important for system sustainability and accessibility as populations age. To explore Australian general practitioner perspectives on managing multimorbidity, the factors supporting their work, and those impeding their ability to meet their own standards of care provision. A qualitative study conducted with Australian general practitioners using semistructured, in-depth interviews and inductive thematic data analysis. Twelve interviews with general practitioners were conducted. Three main themes were constructed from the data: Multimorbidity as an encounter with complexity and contingency Evidence constraints in multimorbidity care and Concerns for patient safety. System structure and the Australian general practice model restrict general practitioners’ ability to provide care to their level of satisfaction by linking short consultation times to practice remuneration. Attitudes toward the applicability of guideline evidence were mixed despite most general practitioners questioning its generalizability. Patient safety concerns pervaded most interviews and largely centered on system fragmentation and insufficient intersectoral communication. General practitioners rely on multiple sources of information to provide patient-centered care but chiefly the accumulated knowledge of their patients. Australian general practitioners share many multimorbidity concerns with international colleagues. While multimorbidity-specific evidence may be unrealistic to expect in the immediate term, system investment and adaptation is needed to support general practice sustainability and clinician ability to provide adequate multimorbidity care, suitably remunerated, into the future.
Publisher: Elsevier BV
Date: 05-2012
DOI: 10.1016/J.JPAINSYMMAN.2011.05.015
Abstract: In specialist hospice and palliative care services, variations occur in diagnoses and prognoses of subpopulations referred, service configuration, and the health systems delivering care. These three levels of variation limit the ability to generalize study findings. This article reports on coding one year of palliative care research using a previously developed checklist. The aims were to 1) quantify current reporting of factors related to generalizability in specialist palliative care research 2) review and potentially refine the checklist in light of the first aim 3) demonstrate the feasibility of collecting these data and 4) set out simple processes to aid researchers in reporting, and clinicians in applying, new research evidence in hospice and palliative care. A previously published checklist (five domains, 14 core subdomains, and 24 noncore subdomains) was used to code all research articles (n=189) published in 2007 in the three leading palliative care research journals. The most frequently reported subdomains were patient age, gender, and diagnosis model of service delivery and patient performance status. Data in subdomains, including time from referral to death, socioeconomic indices, and ethnicity, were rarely reported none reported whole-of-service or whole-of-population data. In total, 2646 (189×14) core subdomains could have been reported. Data were provided in 28% (746/2646). Checklists such as the Consolidated Standards of Reporting Trials evaluate study design, focusing mainly on internal validity. The proposed checklist deals with specific content of hospice and palliative care, focusing on external validity.
Publisher: Scientific Research Publishing, Inc.
Date: 2016
Publisher: Springer Science and Business Media LLC
Date: 08-08-2005
Abstract: Palliative care is an evolving specialty with a growing evidence base. However, evidence is less accessible than it could be with a lower than average conversion of conference abstracts to articles in peer-reviewed journals and the need for more accessible tools to support evidence-based practice (EBP) in palliative care. The CareSearch project involved identifying, collecting and evaluating Australia's "grey" palliative care literature and identifying international published literature missing from the electronic indexing systems. The literature was then catalogued and made publicly available through the CareSearch website. To date over 2,500 items have been included in the CareSearch database and can be accessed and searched through a publicly available website. Nearly 2,000 items are conference abstracts and 178 are theses or government, organisational and planning documents. A further 410 items relate to articles from palliative journals that are not indexed on a major bibliographic database. The website also provides tools and facilities to support palliative care practice and research. CareSearch is a new evidence resource for palliative practitioners, educators and researchers. The palliative community now has access to a more comprehensive literature base as well as a resource that supports the integration of knowledge into practice. This specialised data repository enables users to access information on the body of work that has shaped palliative care development and prevents the potential loss or duplication of research work. It also provides a template for other emerging disciplines to use in capturing their literature and evidence.
Publisher: BMJ
Date: 11-2018
DOI: 10.1136/BMJOQ-2017-000286
Abstract: The study aimed to determine the effectiveness of an action-orientated toolkit in supporting behaviour change in relation to quality end-of-life care in acute hospital settings. The toolkit was developed to complement a programme of online end-of-life care education. A toolkit was developed from an international review of peer-reviewed literature on end of life. Toolkits were distributed (n=428) to Australian healthcare professionals over a 4-week period. An online survey was sent to all recipients 65 responses were received (16% response rate, excluding emails returned as undeliverable). Semistructured interviews (n=10) were conducted using purposeful s ling to ensure a range of views were captured. The focus of the evaluation was on investigating (1) users’ responses to the toolkit and (2) in iduals’ reported behaviour change. The toolkit was well received by users who reported increased confidence in communication around end-of-life matters. 59.3% of users reported making a behaviour change over the previous 4 weeks 70.8% of those who had not made a change reported they intended to in the near future. Against expectation, the toolkit’s appeal went beyond its intended audience in acute hospital settings, for ex le, personal care workers in aged care settings. Despite study limitations (self-report of a small, self-selected s le), these early findings suggest that the toolkit has potential to positively impact on end-of-life care practices. However, additional evaluation is needed to determine whether such a toolkit can positively impact on practice and on patient experience at the end of life.
Publisher: SAGE Publications
Date: 11-04-2023
DOI: 10.1177/00302228211008771
Abstract: The study aimed to describe views on Voluntary Assisted Dying (VAD), gleaned through qualitative analysis of participant responses to a set activity, run during the 2018 ‘Dying2Learn’ Massive Open Online Course (MOOC). Data from 508 participants, most of whom identified as health professionals, were analysed using thematic content analysis, and themes generated. A large proportion of participants discussed their personal views related to VAD, specifically around choice, control, dignity, palliative care and dying at home, medical intervention, societal factors, the impact on those left behind, laws and regulations, dying ‘naturally’, advance care directives, and being in pain. In this study, participants had many different views on the act itself, often isive, but also with common concepts such as respecting the choices and decisions of others.
Publisher: MDPI AG
Date: 29-06-2017
Publisher: MDPI AG
Date: 11-12-2020
DOI: 10.3390/HEALTHCARE8040553
Abstract: General practitioners (GPs) are increasingly expected to provide palliative care as ageing populations put pressure on specialist services. Some GPs, however, cite barriers to providing this care including prognostication challenges and lack of confidence. Palliative care content within clinical practice guidelines might serve as an opportunistic source of informational support to GPs. This review analysed palliative care content within Australian guidelines for life-limiting conditions to determine the extent to which it might satisfy GPs’ stated information needs and support them to provide quality end-of-life care. Six databases and guideline repositories were searched (2011–2018). Eligible guidelines were those for a GP audience and explicitly based on an appraisal of all available evidence. Content was mapped against an established palliative care domain framework (PEPSI-COLA) and quality was assessed using AGREE-II. The nine guidelines meeting inclusion criteria were heterogenous in scope and depth of palliative care domain coverage. The ‘communication’ needs domain was best addressed while patient physical and emotional needs were variably covered. Spiritual, out-of-hours, terminal care and aftercare content was scant. Few guidelines addressed areas GPs are known to find challenging or acknowledged useful decision-support tools. A template covering important domains might reduce content variability across guidelines.
Publisher: SAGE Publications
Date: 31-03-2021
Publisher: SAGE Publications
Date: 07-2019
Publisher: Mark Allen Group
Date: 02-06-2014
DOI: 10.12968/IJPN.2014.20.6.301
Abstract: As differing patient and carer information needs have been reported, and in light of changing health-system priorities and issues identified in a self-assessment study, a specialist palliative care service established an interdisciplinary psychosocial assessment clinic to separately assess patient and carer needs. To determine the acceptability of the separate assessment to patients and carers. Patients with a high functional score and who were deemed well enough to manage an appointment were invited to attend the clinic. Consent to follow-up was obtained. Patient and carer satisfaction surveys were developed based on existing tools. Questionnaires were posted out with a pre-paid reply envelope to patients and carers. Data from completed surveys was entered into a data management system and frequency analysis completed. A secondary analysis of the comments was undertaken. The clinic was attended by 41 patients and 37 carers between September 2011 and the end of February 2012. There was a 46% response rate, with 24 questionnaires returned from both the patient and their carer, 6 from patients only, and 6 from carers only (2 of whom were bereaved). The opportunity for privacy to discuss their own fears and concerns related to the illness was appreciated by 94% of the patients and 83% of the carers. This initial pilot data shows patient and carer satisfaction with this clinic model. Further qualitative data would provide more information on the patient and carer experiences of the clinic.
Publisher: Hawaii International Conference on System Sciences
Date: 2021
Publisher: Springer Science and Business Media LLC
Date: 07-2020
DOI: 10.1186/S12875-020-01197-8
Abstract: General practitioners (GPs) increasingly manage patients with multimorbidity but report challenges in doing so. Patients describe poor experiences with health care systems that treat each of their health conditions separately, resulting in fragmented, uncoordinated care. For GPs to provide the patient-centred, coordinated care patients need and want, research agendas and health system structures and policies will need to adapt to address this epidemiologic transition. This systematic review seeks to understand if and how multimorbidity impacts on the work of GPs, the strategies they employ to manage challenges, and what they believe still needs addressing to ensure quality patient care. Systematic review and thematic synthesis of qualitative studies reporting GP experiences of managing patients with multimorbidity. The search included nine major databases, grey literature sources, Google and Google Scholar, a hand search of Journal of Comorbidity , and the reference lists of included studies. Thirty-three studies from fourteen countries were included. Three major challenges were identified: practising without supportive evidence working within a fragmented health care system whose policies and structures remain organised around single condition care and specialisation and the clinical uncertainty associated with multimorbidity complexity and general practitioner perceptions of decisional risk. GPs revealed three approaches to mitigating these challenges: prioritising patient-centredness and relational continuity relying on knowledge of patient preferences and unique circumstances to in idualise care and structuring the consultation to create a sense of time and minimise patient risk. GPs described an ongoing tension between applying single condition guidelines to patients with multimorbidity as security against uncertainty or penalty, and potentially causing patients harm. Above all, they chose to prioritise their long-term relationships for the numerous gains this brought such as mutual trust, deeper insight into a patient’s unique circumstances, and useable knowledge of each in idual’s capacity for the work of illness and goals for life. GPs described a need for better multimorbidity management guidance. Perhaps more than this, they require policies and models of practice that provide remunerated time and space for nurturing trustful therapeutic partnerships.
Publisher: MDPI AG
Date: 12-08-2020
Abstract: Globally, the number of older people requiring appropriate and safe management of medicines is growing. This review aimed to identify the roles and responsibilities of pharmacists supporting older people living in a community setting with their palliative care needs and to synthesise key themes emerging from the data, as well as any gaps in knowledge. The literature search included Medline (Ovid), Scopus, and Cinahl (Ebsco) databases. An English language limit was applied. The search included all international articles and any date of publication. Data were synthesised utilizing a systematic text condensation technique and presented according to Theme, Domain, and Meaning Units. Fourteen studies met the inclusion criteria. Selected papers predominantly focused on care provided by the pharmacists supporting people receiving residential aged care services. Clinical review, supply of medicines, and clinical governance were identified as key pharmacist roles. Pharmacists’ communication skills, personal behavioural approach, and positive attitude emerged as supportive characteristics for effective person-centered care. Minimal, or no information, were available related to pharmacists located in general medical practices and in Aboriginal health services sector, respectively. The multifaceted role of pharmacists presents an opportunity to provide comprehensive health care for older populations at the end of their life.
Publisher: Elsevier BV
Date: 06-2012
DOI: 10.1016/J.JPAINSYMMAN.2011.07.012
Abstract: Although research activity in palliative care is rapidly increasing, the composition of published studies--in terms of significant research characteristics--has not yet been well described. To describe the topics of and funding for palliative care studies reported in the three hospice and palliative care journals with the highest impact factors (Journal of Pain and Symptom Management, Palliative Medicine, and Journal of Palliative Medicine). This was a substudy of a larger bibliographic study. The targeted journals were searched for 2007 using a previously validated Ovid MEDLINE filter for palliative care. All empirical palliative care studies were included. Articles were classified according to topics (palliative care patient, caregiver/family, health professional, service provision, tool development, healthy volunteer, medication compatibility, community), study type (intervention, nonintervention), country of origin, and funding source (pharmaceutical company, other funder, unfunded). Of 409 citations identified, the search yielded 189 eligible articles. Most articles were descriptive/observational. Approximately half were unfunded. Caregivers, healthy volunteers, and health service research were the least frequent topics for research. Only five randomized controlled trials were reported. Although there is a broad range of research undertaken in palliative care, few studies generate high-level evidence, with data showing a relative lack of funding for hospice and palliative care studies.
Publisher: Mary Ann Liebert Inc
Date: 06-2010
Abstract: Accessing new knowledge as the evidence base for hospice and palliative care grows has specific challenges for the discipline. This study aimed to describe conversion rates of palliative and hospice care conference abstracts to journal articles and to highlight that some palliative care literature may not be retrievable because it is not indexed on bibliographic databases. Substudy A tracked the journal publication of conference abstracts selected for inclusion in a gray literature database on www.caresearch.com.au . Abstracts were included in the gray literature database following handsearching of proceedings of over 100 Australian conferences likely to have some hospice or palliative care content that were held between 1980 and 1999. Substudy B looked at indexing from first publication until 2001 of three international hospice and palliative care journals in four widely available bibliographic databases through systematic tracing of all original papers in the journals. Substudy A showed that for the 1338 abstracts identified only 15.9% were published (compared to an average in health of 45%). Published abstracts were found in 78 different journals. Multiauthor abstracts and oral presentations had higher rates of conversion. Substudy B demonstrated lag time between first publication and bibliographic indexing. Even after listing, idiosyncratic noninclusions were identified. There are limitations to retrieval of all possible literature through electronic searching of bibliographic databases. Encouraging publication in indexed journals of studies presented at conferences, promoting selection of palliative care journals for database indexing, and searching more than one bibliographic database will improve the accessibility of existing and new knowledge in hospice and palliative care.
No related grants have been discovered for Jennifer Tieman.