ORCID Profile
0000-0002-7232-6208
Current Organisation
University of South Australia
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Publisher: Rosemary Bryant AO Research Centre
Date: 2019
DOI: 10.25954/1J5Q-ZB08
Publisher: Australian Nursing and Midwifery Federation
Date: 06-10-2020
Publisher: Australian Nursing and Midwifery Federation
Date: 16-04-2020
Publisher: University of South Australia,
Date: 2021
DOI: 10.25954/6P10-VT32
Publisher: Wiley
Date: 03-02-2023
DOI: 10.1111/JOCN.16632
Abstract: Nurses comprise the largest portion of the healthcare workforce worldwide. However, nurse representation in the leadership of clinical research and research funding is largely unknown. The Australasian Nursing and Midwifery Clinical Trials Network was established to provide a coordinated network, focussed on building research capacity in nursing and midwifery. To support this work, this scoping review of nurse‐led randomised controlled trials was conducted to summarise research activity, as well as highlight future research directions, gaps and resources. Midwife‐led trials will be reported elsewhere. To quantify number, type and quality of nurse‐led randomised controlled trials registered between 2000–2021. A scoping review of RCTs. Medline, Emcare and Scopus were searched from 2000 to August 2021. ANZCTR, NHMRC, MRFF and HRC (NZ) registries were searched from inception to July 2021. This review was informed by the JBI scoping review framework using the PRISMA‐ScR. Our search yielded 188 nurse‐led publications and 279 registered randomised controlled trials. Multiple trials had the same nurse leaders. There were more registrations than publications. Publications were predominantly of high methodological quality however, there was a reliance on active controls and blinding was low. Trial registrations indicate that universities and hospital/healthcare organisations were the major sources of funding, while publications indicate that Governments and the National Health and Medical Research Council were the main funding bodies. A small number of high‐quality, large‐scale, nationally funded randomised controlled trials were identified, with a larger number of locally funded small trials. There was a disparity between the number of registered trials and those published. Additional infrastructure, funding and career frameworks are needed to enable nurses to design, conduct and publish clinical trials that inform the health system and improve health outcomes. Research initiated and led by nurses has the potential to improve the health and well‐being of in iduals and communities, and current nurse‐led research is of high methodological quality however, there were very few nurse‐led RCTs, conducted by a small pool of nurse researchers. This gap highlights the need for support in the design, conduct and publishing of nurse‐led RCTs. This is a scoping review therefore, patient or public contribution is not applicable.
Publisher: Springer Science and Business Media LLC
Date: 04-03-2022
DOI: 10.1007/S11136-022-03112-3
Abstract: There is a recognised need for reported national data that inform health policy, health professions, and consumers about the wellbeing of Australians with cancer and other chronic conditions. International initiatives have demonstrated the viability and benefits of utilising population-based cancer registries to monitor the prevalence and trajectory of health-related quality of life (HRQOL) outcomes among people with cancer. Establishing a similar level of monitoring in Australia would require timely access to health data collected by publicly funded, population-based cancer registries, and the capacity to link this information across jurisdictions. Combining information from different sources via data linkage is an efficient and cost-effective way to maximise how data are used to inform population health and policy development. However, linking health datasets has historically been highly restricted, resource-intensive, and costly in Australia due to complex and outdated legislative requirements, duplicative approval processes, and differing policy frameworks in each state and territory. This has resulted in significant research waste due to underutilisation of existing data, duplication of research efforts and resources, and data not being translated into decision-making. Recognising these challenges, from 2015 to 2017 the Productivity Commission investigated options for improving data availability and use in Australia, considering factors such as privacy, security, and intellectual property. The inquiry report recommended significant reforms for Australian legislation, including the creation of a data sharing and release structure to improve access to data for research and policy development purposes. This paper discusses (1) opportunities in HRQOL research enabled by data linkage, (2) barriers to data access and use in Australia and the implications for waste in HRQOL research, and (3) proposed legislative reforms for improving data availability and use in Australia.
Publisher: Elsevier BV
Date: 09-2021
DOI: 10.1016/J.IJNURSTU.2021.103986
Abstract: Globally, chronic disease is a leading cause of illness, disability and death and an important driver of health system utilization and spending. Continuity of care is a significant component of quality healthcare. However, an association between nurse-led services, interventions, patient outcomes and continuity of care at the primary and secondary interface as an outcome, has not been established for people with chronic disease. To identify the effectiveness of nurse-led services for people with chronic disease in achieving an outcome of continuity of care at the primary-secondary healthcare interface. Quantitative systematic review. Systematic searches of Medline, Cochrane, Embase, Emcare, JBI and Scopus databases were conducted of studies published between 1946 and May 2019 using the search terms "nurse", "continuity of care" and "chronic disease". Quality of the included studies was assessed using the Cochrane risk of bias tool for randomized controlled trials and Joanna Briggs Institute quality appraisal checklists. A second reviewer screened 10% of full text articles and all articles in critical appraisal. Studies were excluded from the review if they were of poor methodological quality or the description of the effect of the nurse-led service was inadequately reported. Fourteen studies were included in the review (n=4,090 participants). All studies incorporated recognized continuity of care interventions. The nurse-led services were associated with fewer hospitalizations, reduced by 2-8.9% and re-admissions reduced by 14.8-51% (n=886). Reporting of positive patient experiences and improvement in symptoms and lifestyle was also evident. An association of nurse-led services with improved continuity of care between primary and secondary health services as an outcome per se could not be concluded. Nurse-led services for adults provide coordinated interventions that support continuity of care for people with chronic disease in both the primary and secondary healthcare settings that are associated with reduced hospitalizations or readmissions and patient satisfaction. However, the limited use of validated continuity of care outcome measurement tools precluded establishing correlations between interventions, patient outcomes and continuity of care as a specific outcome.
Publisher: Wiley
Date: 22-09-2017
DOI: 10.1111/JEP.12640
Abstract: Screening has been found to reduce breast cancer mortality at a population level in Australia, but these studies did not address local settings where numbers of deaths would generally have been too low for evaluation. Clinicians, administrators, and consumer groups are also interested in local service outcomes. We therefore use more common prognostic and treatment measures and survivals to gain evidence of screening effects among patients attending 4 local hospitals for treatment. To compare prognostic, treatment, and survival measures by screening history to determine whether expected screening effects are occurring. Employing routine clinical registry and linked screening data to investigate associations of screening history with these measures, using unadjusted and adjusted analyses. Screened women had a 10-year survival from breast cancer of 92%, compared with 78% for unscreened women and 79% of screened surgical cases had breast conserving surgery compared with 64% in unscreened women. Unadjusted analyses indicated that recently screened cases had earlier tumor node metastasis stages, smaller diameters, less nodal involvement, better tumor differentiation, more oestrogen and progesterone receptor positive lesions, more hormone therapy, and less chemotherapy. Radiotherapy tended to be more common in screening participants. More frequent use of adjunctive radiotherapy applied when breast conserving surgery was used. Results confirm the screening effects expected from the scientific literature and demonstrate the value of opportunistic use of available registry and linked screening data for indicating to local health administrations, practitioners, and consumers whether local screening services are having the effects expected.
Publisher: JMIR Publications Inc.
Date: 09-12-2019
DOI: 10.2196/15006
Abstract: Innovative strategies are required to reduce care fragmentation for people with multimorbidity. Coordinated models of health care delivery need to be adopted to deliver consumer-centered continuity of care. Nurse-led services have emerged over the past 20 years as evidence-based structured models of care delivery, providing a range of positive and coordinated health care outcomes. Although nurse-led services are effective in a range of clinical settings, strategies to improve continuity of care across the secondary and primary health care sectors for people with multimorbidity have not been examined. To implement a nurse-led model of care coordination from a multidisciplinary outpatient setting and provide continuity of care between the secondary and primary health care sectors for people with multimorbidity. This action research mixed methods study will have two phases. Phase 1 includes a systematic review, stakeholder forums, and validation workshop to collaboratively develop a model of care for a nurse-led care coordination service. Phase 2, through a series of iterative action research cycles, will implement a nurse-led model of care coordination in a multidisciplinary outpatient setting. Three to five iterative action research cycles will allow the model to be refined and further developed with multiple data collection points throughout. Pilot implementation of the model of care coordination commenced in October 2018. Formal study recruitment commenced in May 2019 and the intervention and follow-up phases are ongoing. The results of the data analysis are expected to be available by March 2020. Nursing, clinician, and patient outcomes and experiences with the nurse-led model of care coordination will provide a template to improve continuity of care between the secondary and primary health care systems. The model template may provide a future pathway for implementation of nurse-led services both nationally and internationally. DERR1-10.2196/15006
Publisher: Elsevier BV
Date: 08-2018
Abstract: To determine the incidence, multiplicity, geographical variability and service trends of keratinocyte cancers (KC) in South Australia (SA). Medicare Australia data with a unique identifier were used to assess the number of people treated over years 2010-2014. A maximum of one KC service claim per year was used to determine incidence. Age-standardised rates were estimated as were KC service activity trends. There were 497,581 services to 204,183 SA residents for KC, solar keratoses, locally aggressive skin tumours or suspicious skin lesions. Of these, n=159,137 services were for KC (77,502 people). The five-year (2010-2014) age-standardised rate of KC in SA was 1,466.6 (95%CI 1,458.3-1,474.8) per 100,000. Forty per cent of people had more than one KC removed. Men accounted for more incident cases (59.2%). Age-specific rates showed least variability over time in the youngest age group (15-44 years). For 26 geographical areas, higher age-standardised ratios of KC were seen in coastal and agricultural areas. There was a 59% increase in services for KC from 2000 to 2015. Age-standardised rates for KC are relatively stable in SA, but regional variations are evident. Services for KC continue to rise. Implications for public health: This is the first systematic report of KC in SA. We demonstrate the utility of using validated Medicare data for assessing KC incidence and trends.
Publisher: Wiley
Date: 24-04-2018
DOI: 10.1111/HEX.12687
Publisher: Wiley
Date: 31-05-2022
DOI: 10.1111/AJAG.13093
Abstract: Clinical pathways are used to improve the quality of care, reduce variation and maximise health or treatment outcomes in selected populations. The aim of this study was to develop a draft clinical pathway based on the best practice evidence for use in the management of behavioural and psychological symptoms of dementia (BPSD) in residential aged care facilities (RACFs). The pathway was developed using the best practice evidence from clinical practice guidelines, operational guides and a systematic literature review. A multidisciplinary team of health professionals and researchers worked in an iterative process to contextualise the proposed pathway to local needs and context, and improve its clarity and user‐friendliness. The pathway was then re‐assessed for accuracy and adherence to the evidence. The draft pathway outlines processes for BPSD prevention, watchful waiting for mild‐to‐moderate BPSD, and specific interventions for severe BPSD. Ongoing risk assessment is required throughout, and non‐pharmacological options are first‐line interventions. Person‐centred care was found to be an important care component across all three phases. An instruction guide with colour‐coded flow charts was developed to assist staff with determining the best care and treatment for each person living with dementia. Feasibility testing is underway. A draft clinical pathway based on clinical practice guidelines was developed to enhance the translation of evidence into practice for the management of BPSD, by nursing and clinical leaders in RACFs.
Publisher: Elsevier BV
Date: 08-2021
Publisher: MDPI AG
Date: 12-11-2019
DOI: 10.3390/HEALTHCARE7040142
Abstract: Background: Nurses and midwives are central to the implementation and delivery of quality care through evidence-based practice (EBP). However, implementation of EBP in nursing and midwifery is under-researched with few ex les of systematic and sustained change. The Registered Nurses Association of Ontario’s Best-Practice Spotlight Organization (BPSO) Program was adopted in South Australia as a framework to systematically implement EBP in two erse and complex healthcare settings. Methods: The study was a post-implementation, mixed-method evaluation conducted at two healthcare settings in Adelaide, South Australia utilizing qualitative and quantitative data. Proctor’s implementation evaluation framework guided the evaluation design. Information sources included interviews, focus groups, questionnaires, and document review. Results: Clinical and executive staff (n = 109 participants) from a broad range of stakeholder groups participated in the interviews, focus groups, and returned questionnaires. A number of facilitators directly affecting program implementation were identified these pertained to embedding continuity into the program’s implementation and delivery, a robust governance structure, and executive sponsorship. Barriers to implementation were also identified. These barriers pertained to organizational or workforce challenges staff turnover and movement (e.g., secondment), insufficient staff to allow people to attend training, and a lack of organizational commitment to the program, especially at an executive level. As a result of successful implementation, it was observed that over three years, the BPSO program positively influenced the uptake and implementation of EBP by clinicians and the organizations into which they were introduced. Conclusions: The BPSO model can be translocated to new healthcare systems and has the potential to act as a mechanism for establishing and sustaining EBP change. This study was the first to apply an implementation evaluation framework to the BPSO program, which allowed for structured analysis of facilitating or impeding factors that affected implementation success. The findings have important implications for other health systems looking to translocate the same or similar EBP programs, as well as contributing to the growing body of implementation evaluation literature.
Publisher: Rosemary Bryant AO Research Centre
Date: 2017
DOI: 10.25954/4PW5-JQ86
Publisher: Informa UK Limited
Date: 30-06-2020
Publisher: University of South Australia
Date: 2021
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 29-09-2021
Publisher: JMIR Publications Inc.
Date: 12-06-2019
Abstract: nnovative strategies are required to reduce care fragmentation for people with multimorbidity. Coordinated models of health care delivery need to be adopted to deliver consumer-centered continuity of care. Nurse-led services have emerged over the past 20 years as evidence-based structured models of care delivery, providing a range of positive and coordinated health care outcomes. Although nurse-led services are effective in a range of clinical settings, strategies to improve continuity of care across the secondary and primary health care sectors for people with multimorbidity have not been examined. o implement a nurse-led model of care coordination from a multidisciplinary outpatient setting and provide continuity of care between the secondary and primary health care sectors for people with multimorbidity. his action research mixed methods study will have two phases. Phase 1 includes a systematic review, stakeholder forums, and validation workshop to collaboratively develop a model of care for a nurse-led care coordination service. Phase 2, through a series of iterative action research cycles, will implement a nurse-led model of care coordination in a multidisciplinary outpatient setting. Three to five iterative action research cycles will allow the model to be refined and further developed with multiple data collection points throughout. ilot implementation of the model of care coordination commenced in October 2018. Formal study recruitment commenced in May 2019 and the intervention and follow-up phases are ongoing. The results of the data analysis are expected to be available by March 2020. ursing, clinician, and patient outcomes and experiences with the nurse-led model of care coordination will provide a template to improve continuity of care between the secondary and primary health care systems. The model template may provide a future pathway for implementation of nurse-led services both nationally and internationally. ERR1-10.2196/15006
Publisher: Wiley
Date: 04-2015
DOI: 10.1071/HE14066
Publisher: Springer Science and Business Media LLC
Date: 03-04-2017
DOI: 10.1007/S11764-017-0607-2
Abstract: This systematic narrative review describes and compares the development and operational approaches of monitoring systems without a clinical care component that collect patient-reported outcome (PRO) data from cancer survivors. Searches were conducted using Medline, PubMed, PsycINFO, the Cochrane Library, CINAHL, Scopus, Joanna Briggs Institute EBP Database and Google Scholar (Advanced). Sources of grey literature and websites of relevant organisations were also searched for relevant published and unpublished material. Articles were included if they described the development (including piloting) of monitoring systems with ongoing recruitment that collect PRO at more than one time point, from 6 months post-diagnosis onward. The initial searches returned 7290 unique citations. After screening titles and abstracts, 39 full-text articles were retrieved for more detailed examination. Eleven articles were included in the review, representing seven international monitoring systems. Systems varied in their scope, implementation process, governance and administration, recruitment and data collection, consent rates, PRO collection, use of PRO and translation strategies. The most suitable approach for setting-up and implementing a monitoring system for ongoing surveillance will differ depending on the unique requirements, aims and level of resourcing available within a particular context. Better specification and consideration of how PRO data will be used, for what purpose, and by whom, is required to inform effective translational strategies to improve outcomes for cancer survivors. The findings from this review may inform the future development of survivorship monitoring systems in varied environments, which in turn may improve practices that lead to better outcomes for survivors.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 09-04-2020
Abstract: Various indicators of socioeconomic position ( SEP ) may have opposing effects on the risk of hypertension in disadvantaged settings. For ex le, high income may reflect sedentary employment, whereas greater education may promote healthy lifestyle choices. We assessed whether education modifies the association between income and hypertension in 3 regions of South India at different stages of epidemiological transition. Using a cross‐sectional design, we randomly selected villages within each of rural Trivandrum, West Godavari, and Rishi Valley. S ling was stratified by age group and sex. We measured blood pressure and anthropometry and administered a questionnaire to identify lifestyle factors and SEP , including education, literacy, and income. Logistic regression was used to assess associations between various components of SEP and hypertension, and interaction analyses were used to determine whether educational attainment modified the association between income and hypertension. Trivandrum, the region of highest SEP , had the greatest prevalence of hypertension, whereas Rishi Valley, the lowest SEP region, had the least. Overall, greater income was associated with greater risk of hypertension. In interaction analyses, there was no evidence that educational attainment modified the association between income and hypertension. Education is widely considered to ameliorate the risk of hypertension in high‐income countries. Why this effect is absent in rural India merits investigation.
Publisher: Rosemary Bryant AO Research Centre
Date: 2020
DOI: 10.25954/KEXW-A589
Publisher: Springer Science and Business Media LLC
Date: 29-10-2019
DOI: 10.1186/S12913-019-4534-Y
Abstract: Aboriginal and Torres Strait Islander Australians have poorer cancer outcomes than other Australians. Comparatively little is known of the type and amount of cancer treatment provided to Aboriginal and Torres Strait Islander people and the consequences for cancer survival. This study quantifies the influence of surgical, systemic and radiotherapy treatment on risk of cancer death among matched cohorts of cancer cases and, the comparative exposure of cohorts to these treatments. Cancers registered among Aboriginal South Australians in 1990–2010 ( N = 777) were matched with randomly selected non-Indigenous cases by sex, birth and diagnostic year, and primary site, then linked to administrative cancer treatment for the period from 2 months before to 13 months after diagnosis. Competing risk regression summarised associations of Indigenous status, geographic remoteness, comorbidities, cancer stage and treatment exposure with risk of cancer death. Fewer Aboriginal cases had localised disease at diagnosis (37.2% versus 50.2%) and they were less likely to: experience hospitalisation with cancer diagnosis, unadjusted odds ratio (UOR) = 0.76 95%CI = 0.59–0.98 have surgery UOR = 0.65 95%CI = 0.53–0.80 systemic therapies UOR = 0.64 95%CI = 0.52–0.78 or radiotherapy, UOR = 0.76 95%CI = 0.63–0.94. Localised disease carried lower risk of cancer death compared to advanced cases receiving surgery or systemic therapies, SHR = 0.34 95%CI = 0.25–0.47 and SHR = 0.35 95%CI = 0.25–0.48. Advanced disease and no treatment carried higher risk of cancer death, SHR = 1.82 95%CI = 1.26–2.63. The effects of treatment did not differ between Aboriginal and non-Indigenous cohorts. However, comparatively less exposure to surgical and systemic treatments among Aboriginal cancer cases further complicated the disadvantages associated with geographic remoteness, advanced stage of disease and co-morbid conditions at diagnosis and add to disparities in cancer death. System level responses to improving access, utilisation and quality of effective treatments are needed to improve survival after cancer diagnosis.
Publisher: Hindawi Limited
Date: 20-09-2018
DOI: 10.1111/ECC.12760
Abstract: Registry data on invasive cervical cancers (n = 1,274) from four major hospitals (1984-2012) were analysed to determine their value for informing local service delivery in Australia. The methodology comprised disease-specific survival analyses using Kaplan-Meier product-limit estimates and Cox proportional hazards models and treatment analyses using logistic regression. Five- and 10-year survivals were 72% and 68%, respectively, equating with relative survival estimates for Australia and the USA. Most common treatments were surgery and radiotherapy. Systemic therapies increased in recent years, generally with radiotherapy, but were less common for residents from less accessible areas. Surgery was more common for younger women and early-stage disease, and radiotherapy for older women and regional and more advanced disease. The proportion of glandular cancers increased in-step with national trends. Little evidence of variation in risk-adjusted survival presented over time or by Local Health District. The study illustrates the value of local registry data for describing local treatment and outcomes. They show the lower use of systemic therapies among residents of less accessible areas which warrants further investigation. Risk-adjusted treatment and outcomes did not vary by socio-economic status, suggesting equity in service delivery. These data are important for local evaluation and were not available from other sources.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 25-10-2022
Publisher: Elsevier BV
Date: 02-2020
DOI: 10.1016/J.MIDW.2019.102589
Abstract: Shared decision making in pregnancy, labour, and birth is vital to woman-centred care and despite strong evidence for the effectiveness of shared decision making in pregnancy care, practical uptake has been slow. This scoping review aimed to identify and describe effective and appropriate shared decision aids designed to be provided to women in the antenatal period to assist them in making informed decisions for both pregnancy and birth. Two questions guided the enquiry: (i) what shared decision aids for pregnancy and perinatal care are of appropriate quality and feasibility for application in Australia? (ii) which of these decision aids have been shown to be effective and appropriate for Aboriginal and Torres Strait Islander peoples, culturally erse women, or those with low literacy? The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews (PRISMA-ScR) was used to conduct the review. Five key databases and selected grey literature sources were examined. English language evidence from Australia, Europe, Canada, United Kingdom, New Zealand, and United States of America produced from 2009 was eligible for inclusion, checked against apriori inclusion criteria, and assessed for quality and usability using the International Patient Decision Aid Standards. From a total of 5,209 search results, 35 sources of evidence reporting on 27 decision aids were included following title/abstract and full-text review. Most of the decision aids concerned decisions around birth (52%, n = 14) or antenatal screening 37% (n = 10). The quality of the decision aids was moderate to high, with most communicating risks, benefits, and choice pathways via a mix of Likert-style scales, quizzes, and pictures or graphs. Use of decision aids resulted in significant reductions in decisional conflict and increased knowledge. The format of decision aids appeared to have no effect on these outcomes, indicating that paper-based are as effective as video- or audio-based decision aids. Eleven decision aids were suitable for low literacy or low health literacy women, and six were either developed for culturally erse groups or have been translated into other languages. No decision aids found were specific to Aboriginal and Torres Strait Islander peoples. The 27 decision aids are readily adoptable into westernised healthcare settings and can be used by midwives or multidisciplinary teams in conjunction with women. Decision aids are designed to support women, and families to arrive at informed choices and supplement the decision-making process rather than to replace consumer-healthcare professional interaction. If given before an appointment, high quality decision aids can increase a woman's familiarity with medical terminology, options for care, and an insight into personal values, thereby decreasing decisional conflict and increasing knowledge.
Publisher: Elsevier BV
Date: 09-2017
DOI: 10.1016/J.PEC.2017.04.005
Abstract: This rapid review summarizes best available evidence on consumers' needs and preferences for information about healthcare, with a focus on the Australian context. Three questions are addressed: 1) Where do consumers find and what platform do they use to access information about healthcare? 2) How do consumers use the healthcare information that they find? 3) About which topics or subjects do consumers need healthcare information? A hierarchical approach was adopted with evidence first sought from reviews then high quality studies using Medline (via PubMed), CINAHL, Embase, the JBI Database of Systematic Reviews and Implementation Reports, the C bell Collaboration Library of Systematic Reviews, EPPI-Centre, and Epistemonikos. Twenty-eight articles were included four systematic reviews, three literature reviews, thirteen quantitative studies, six qualitative studies, and two mixed methods studies. Consumers seek health information at varying times along the healthcare journey and through various modes of delivery. Complacency with historical health information modes is no longer appropriate and flexibility is essential to suit growing consumer demands. Health information should be readily available in different formats and not exclusive to any single medium.
Publisher: Rosemary Bryant AO Research Centre
Date: 2020
DOI: 10.25954/J6B9-SG84
Publisher: Springer Science and Business Media LLC
Date: 31-08-2020
DOI: 10.1007/S11764-020-00924-5
Abstract: Core outcome sets aim to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. This study aimed to identify a core set of patient-reported outcomes (PROs) representing the most important issues impacting on cancer survivors’ long-term health, functioning, and quality of life, to inform population-based research on cancer survivorship. In phase I, a list of 46 outcomes was generated through focus groups ( n = 5) with cancer survivors ( n = 40) and a review of instruments for assessing quality of life in cancer survivorship. In phase II, 69 national experts in cancer survivorship practice, research, policy, and lived experience participated in a two-round Delphi survey to refine and prioritise the listed outcomes into a core outcome set. A consensus meeting was held with a sub-s le of participants to discuss and finalise the included outcomes. Twelve outcome domains were agreed upon for inclusion in the core outcome set: depression, anxiety, pain, fatigue, cognitive problems, fear of cancer recurrence or progression, functioning in everyday activities and roles, financial toxicity, coping with cancer, overall bother from side effects, overall quality of life, and overall health status. We established a core set of PROs to standardise assessment of cancer survivorship concerns at a population level. Adoption of the core outcome set will ensure that survivorship outcomes considered important by cancer survivors are assessed as a minimum in future studies. Furthermore, its routine use will optimise the comparability, quality, and usefulness of the data cancer survivors provide in population-based research.
Publisher: Wiley
Date: 03-2020
DOI: 10.1111/IMJ.14754
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 12-08-2021
Publisher: JMIR Publications Inc.
Date: 30-04-2019
Abstract: ore outcome sets seek to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. The problems arising from a lack of outcome standardization in population-based cancer survivorship research indicate the need for agreement on a core set of patient-reported outcomes (PROs) to enhance data quality, consistency, and comparability. his study aims to identify a core set of PROs, representing the most important issues impacting on cancer survivors' long-term health, functioning and quality of life, to inform population-based research on cancer survivorship. n Phase I, a list of all potentially important outcomes will be generated through focus group discussions with cancer survivors and a review of measures for assessing quality of life in cancer survivorship. The consolidated list will be advanced to Phase II, where a stakeholder consensus process will be conducted with national experts in cancer survivorship to refine and prioritize the outcomes into a core outcome set. The process will consist of a two-round Delphi survey and a consensus meeting. Cancer survivors, oncology health care professionals, and potential end users of the core outcome set with expertise in cancer survivorship research or policy will be invited to participate. In Phase III, recommended measures for assessment of the core outcome set will be selected with advice from experts on the assessment, analysis, and interpretation of PROs. s of April 2019, data collection for Phase I is complete and data analysis is underway. These data will inform the list of outcomes to be advanced into Phase II. Recruitment for Phase II will commence in June 2019, and it is anticipated that it will take 6 months to complete the three-step consensus process and identify a provisional core outcome set. The study results are expected to be published in early 2020. xpert consensus-driven recommendations on outcome measurement will facilitate the inclusion of survivorship outcomes considered important by cancer survivors and health professionals in future research. Adoption of the core outcome set will enable comparison and synthesis of evidence across studies and enhance the quality of PRO data collected in cancer survivorship research, particularly when applied to address macro-level questions. ERR1-10.2196/14544
Publisher: Elsevier BV
Date: 05-2017
DOI: 10.1016/J.JENVMAN.2017.02.012
Abstract: Exposure to smoke emitted from wildfire and planned burns (i.e., smoke events) has been associated with numerous negative health outcomes, including respiratory symptoms and conditions. This rapid review investigates recent evidence (post-2009) regarding the effectiveness of public health messaging during smoke events. The objectives were to determine the effectiveness of various communication channels used and public health messages disseminated during smoke events, for general and at-risk populations. A search of 12 databases and grey literature yielded 1775 unique articles, of which 10 were included in this review. Principal results were: 1) Smoke-related public health messages are communicated via a variety of channels, but limited evidence is available regarding their effectiveness for the general public or at-risk groups. 2) Messages that use simple language are more commonly recalled, understood, and complied with. Compliance differs according to socio-demographic characteristics. 3) At-risk groups may be advised to stay indoors before the general population, in order to protect the most vulnerable people in a community. The research included in this review was observational and predominantly descriptive, and is therefore unable to sufficiently answer questions regarding effectiveness. Experimental research, as well as evaluations, are required to examine the effectiveness of modern communication channels, channels to reach at-risk groups, and the 'stay indoors' message.
Publisher: Springer Science and Business Media LLC
Date: 15-09-2020
DOI: 10.1186/S41687-020-00244-3
Abstract: Issues arising from a lack of outcome standardisation in health research may be addressed by the use of core outcome sets (COS), which represent agreed-upon recommendations regarding what outcomes should be measured as a minimum in studies of a health condition. This review investigated the scope, outcomes, and development methods of consensus-based COS for cancer, and their approaches and criteria for selecting instruments to assess core patient-reported outcomes (PROs). Studies that used a consensus-driven approach to develop a COS containing PROs, for use in research with cancer populations, were sought via MEDLINE, CINAHL, Embase, Cochrane Library, and grey literature. Seventeen studies met the inclusion criteria. Most COS (82%) were specific to a cancer type (prostate, esophageal, head and neck, pancreatic, breast, ovarian, lung, or colorectal) and not specific to an intervention or treatment (76%). Conducting a systematic review was the most common approach to identifying outcomes (88%) and administering a Delphi survey was the most common approach to prioritising outcomes (71%). The included COS contained 90 PROs, of which the most common were physical function, sexual (dys) function, pain, fatigue, and emotional function. Most studies (59%) did not address how to assess the core PROs included in a set, while 7 studies (41%) recommended specific instruments. Their approaches to instrument appraisal and selection varied. Efforts to standardise outcome assessment via the development of COS may be undermined by a lack of recommendations on how to measure core PROs. To optimise COS usefulness and adoption, valid and reliable instruments for the assessment of core PROs should be recommended with the aid of resources designed to facilitate this process.
Publisher: Wiley
Date: 08-10-2017
DOI: 10.1111/JEP.12819
Abstract: Clinical registry data from major South Australian public hospitals were used to investigate trends in invasive breast‐cancer treatment and survival by age. Disease‐specific survival was calculated for the 1980 to 2013 diagnostic period using Kaplan‐Meier product‐limit estimates, with a censoring of live cases on December 31, 2014. Cox proportional hazards regression was used to examine differences in survival by age and tumour characteristic. First‐round treatments following diagnosis were analysed, using multiple logistic regression to adjust for confounding. Five‐year survival increased from 75% in the 1980s to 87% in 2000 to 2013, consistent with national trends, and with increases occurring irrespective of age. There was an increased use of breast conserving surgery, radiotherapy, chemotherapy, and hormone treatments. Five‐year survival was lower for women aged 80+ years, increasing from 65% in the 1980s to 74% in 2000 to 2013. Lower survival in these older women persisted after adjusting for TNM stage, other clinical variables, and diagnostic year, without evidence of a reduced disparity over time. Older women were less likely to have surgery, radiotherapy, and chemotherapy throughout 1980 to 2013. By comparison, their use of hormone therapy was elevated. The adjusted relative odds of mastectomy (as opposed to breast conserving surgery) were lower for the 80+ year age range. Breast‐cancer survival increases applied to all ages, including 80+ years, but poorer outcomes persisted in this older group and the gap did not reduce. A key question is whether the best trade‐off now exists between optimally therapeutic cancer treatment and accommodations for frailty and co‐morbidity in the aged, or whether opportunities exist for better trade‐offs and better survival. Local registry data are important for describing local service activity and outcomes by age for local service providers, health administrations and consumer groups monitoring disparities and indicating effects of local initiatives.
Publisher: Hindawi Limited
Date: 03-06-2016
DOI: 10.1111/ECC.12515
Abstract: Data from registries at four major public hospitals in South Australia indicate increased 5-year disease-specific survivals for colorectal cancer from 48% to 63% between 1980-1986 and 2005-2010. For 80+ year olds, the increase was smaller, from 47% to 52%. Risk of case fatality halved overall, adjusting for age, gender, stage, differentiation and sub-site. Patients aged 80+ years had a lower risk reduction of about a third (hazards ratio: 0.69 95% confidence limits, 0.52-0.92). Percentages having surgery and other specified treatments were lower for 80+ year olds than younger cases, although increases in treatment intensity occurred in this age range during 1980-2010, as seen in younger ages, in accordance with guidelines. The study illustrates the important feedback clinical registries can provide to clinicians on care patterns and outcomes in their hospital settings. Feedback can be the subject of local deliberations on how to achieve the best outcomes, including in the elderly by considering the best trade-offs between optimal cancer care and accommodations for co-morbidity and frailty. Clinical registry data can be used in comparative effectiveness research in local settings where there are sufficient case numbers.
Publisher: American Physical Society (APS)
Date: 11-04-2017
Publisher: Rosemary Bryant AO research Centre
Date: 2021
DOI: 10.25954/GRV0-GX82
Publisher: Wiley
Date: 06-11-2022
DOI: 10.5694/MJA2.51758
Publisher: Hindawi Limited
Date: 07-03-2017
DOI: 10.1111/ECC.12673
Abstract: Monitoring screening mammography effects in small areas is often limited by small numbers of deaths and delayed effects. We developed a risk score for breast cancer death to circumvent these limitations. Screening, if effective, would increase post-diagnostic survivals through lead-time and related effects, as well as mortality reductions. Linked cancer and BreastScreen data at four hospitals (n = 2,039) were used to investigate whether screened cases had higher recorded survivals in 13 small areas, using breast cancer deaths as the outcome (M1), and a risk of death score derived from TNM stage, grade, histology type, hormone receptor status, and related variables (M2). M1 indicated lower risk of death in screened cases in 12 of the 13 areas, achieving statistical significance (p < .05) in 5. M2 indicated lower risk scores in screened cases in all 13 areas, achieving statistical significance in 12. For cases recently screened at diagnosis (<6 months), statistically significant reductions applied in 8 areas (M1) and all 13 areas (M2). Screening effects are more detectable in small areas using these risk scores than death itself as the outcome variable. An added advantage is the application of risk scores for providing a marker of screening effect soon after diagnosis.
Publisher: Springer Science and Business Media LLC
Date: 07-01-2021
Publisher: Elsevier BV
Date: 02-2021
Publisher: Australian Nursing and Midwifery Federation
Date: 12-02-2020
DOI: 10.37464/2020.371.3
Publisher: Springer Science and Business Media LLC
Date: 21-11-2019
DOI: 10.1007/S11764-019-00813-6
Abstract: The original version of the article contains a mistake in figure 2 labeling.
Publisher: Rosemary Bryant AO Research Centre
Date: 2021
DOI: 10.25954/ZVGD-3984
Publisher: Springer Science and Business Media LLC
Date: 06-09-2019
Publisher: JMIR Publications Inc.
Date: 29-03-2023
Abstract: his co-design research method details the iterative process developed to identify health professional recommendations for the graphical user interface (GUI) of an artificial intelligence (AI)–enabled risk prediction tool. Driving the decision to include a co-design process is the belief that choices regarding the aesthetic and functionality of an intervention are best made by its intended users and that engaging these users in its design will promote the tool’s adoption and use. he aim of this research is to identify health professional design and uptake recommendations for the GUI of an AI-enabled predictive risk tool. e will hold 3 research phases, each consisting of 2 workshops with health professionals, between mid-2023 and mid-2024. A total of 6 health professionals will be sought per workshop, resulting in a total enrollment of 36 health professionals at the conclusion of the research. A total of 7 workshop activities have been scheduled across the 3 workshops these include context of use, notifiers, format, AI survey–Likert, prototype, AI survey–written, and testing. The first 6 of these activities will be repeated in each workshop to enable the iterative development and refinement of GUI. The last activity (testing) will be performed in the final workshop to examine health professionals’ thoughts on the final GUI iteration. Qualitative and quantitative results data will be produced from tasks in each research activity. Qualitative data will be examined through inductive thematic analysis or deductive thematic analysis in accordance with the Nonadoption, Abandonment, and Challenges to the Scale-up, Spread, and Sustainability (NASSS) framework visual data will be examined in accordance with “framework of interactivity ” and quantitative data will be examined using descriptive statistics. roject registration with the Australia and New Zealand Clinical Trial Registry has been requested (#384098). Finalized design recommendations are expected in early to mid-2024, with a results manuscript to be submitted in mid-2024. This research method has human research ethics approval from the South Australian Department of Health and Wellbeing (#2022/HRE00131) as well as from the Human Research Ethics Committee of the University of South Australia (application ID#204143). nderstanding whether an intervention is needed in a particular situation is just the start designing an intervention so that it is used within that situation is paramount. This co-design process engages end users to create a GUI that includes the aesthetic and functional details they need in a manner that aligns with their existing work practices. Indeed, interventions that fail to do this may be disliked, and at worst, they may be dangerous. RR1-10.2196/47717
Publisher: Asian Pacific Organization for Cancer Prevention
Date: 03-04-0011
DOI: 10.7314/APJCP.2015.16.6.2431
Abstract: Registry data from four major public hospitals indicate trends in clinical care and survival from colorectal cancer over three decades, from 1980 to 2010. Kaplan-Meier product- limit estimates and Cox proportional hazards models were used to investigate disease-specific survival and multiple logistic regression analyses to explore first-round treatment trends. Five-year survivals increased from 48% for 1980-1986 to 63% for 2005-2010 diagnoses. Survival increases applied to each ACPS stage (Australian Clinico-Pathological Stage), and particularly stage C (an increase from 38% to 68%). Risk of death from colorectal cancer halved (hazards ratio: 0.50 (0.45, 0.56)) over the study period after adjusting for age, sex, stage, differentiation, primary sub-site, health administrative region, and measures of socioeconomic status and geographic remoteness. Decreases in stage were not observed. Survivals did not vary by sex or place of residence, suggesting reasonable equity in service access and outcomes. Of staged cases, 91% were treated surgically with lower surgical rates for older ages and more advanced stage. Proportions of surgical cases having adjuvant therapy during primary courses of treatment increased for all stages and were highest for stage C (an increase from 5% in 1980-1986 to 63% for 2005-2010). Radiotherapy was more common for rectal than colonic cases. Proportions of rectal cases receiving radiotherapy increased, particularly for stage C where the increase was from 8% in 1980-1986 to 60% in 2005-2010. The percentage of stage C colorectal cases less than 70 years of age having systemic therapy as part of their first treatment round increased from 3% in 1980-1986 to 81% by 1995-2010. Based on survey data on uptake of adjuvant therapy among those offered this care, it is likely that all these younger patients were offered systemic treatment. We conclude that pronounced increases in survivals from colorectal cancer have occurred at major public hospitals in South Australia due to increases in stage-specific survivals. Use of adjuvant therapies has increased and the patterns of change accord with clinical guideline recommendations. Reasons for sub-optimal use of radiotherapy for rectal cases warrant further investigation, including the potential for limited rural access to impede uptake of treatments at metropolitan-based radiotherapy centres.
Publisher: Wiley
Date: 24-11-2022
DOI: 10.1111/JAN.15094
Abstract: To develop evidence‐based recommendations for provision of culturally safe, high‐quality services for breast cancer screening for transgender people. The scoping review will follow the JBI methodological guidance for scoping reviews. A search using MEDLINE (PubMed), Embase (Ovid), Scopus, the Cochrane Library, including the Cochrane Methodology Register, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews and the World Health Organization, Australia Government Department of Health and Google Scholar will be undertaken. The review will include people of any age and ethnicity defined in the source of evidence as transgender. The review will include in iduals who have used gender‐affirming interventions or not and sources of evidence that report information relevant to the provision of culturally safe, high‐quality breast cancer screening services for transgender people. English language sources of evidence published from database inception with information from any country will be eligible for inclusion. Sources will be screened for inclusion by three independent reviewers. Results will be extracted using a purpose‐built tool and presented in relation to the review questions and objective in the final report using tables, figures and corresponding narrative. Project funding was approved by the Australian Government Department of Health in June 2020. There are a range of factors that impact on the equity of health access and outcomes for people who are not cisgender. Transgender people are at risk of breast cancer but there is relatively little evidence about how their risks may or may not differ substantially from cis‐gendered in iduals and little guidance for health providers to ensure inclusive, culturally safe, high‐quality breast cancer screening services for both transgender males, transgender females and gender erse people who may not identify as male or as female. It is important to provide culturally safe, high‐quality services for breast cancer screening for transgender people.
Publisher: Elsevier BV
Date: 06-2017
DOI: 10.1016/J.CANEP.2017.04.013
Abstract: This study tested the utility of retrospectively staging cancer registry data for comparing stage and stage-specific survivals of Aboriginal and non-Aboriginal people. Differences by area level factors were also explored. This test dataset comprised 950 Aboriginal cases and all other cases recorded on the South Australian cancer registry with a 1977-2010 diagnosis. A sub-set of 777 Aboriginal cases diagnosed in 1990-2010 were matched with randomly selected non-Aboriginal cases by year of birth, diagnostic year, sex, and primary site of cancer. Competing risk regression summarised associations of Aboriginal status, stage, and geographic attributes with risk of cancer death. Aboriginal cases were 10 years younger at diagnosis, more likely to present in recent diagnostic years, to be resident of remote areas, and have primary cancer sites of head & neck, lung, liver and cervix. Risk of cancer death was associated in the matched analysis with more advanced stage at diagnosis. More Aboriginal than non-Aboriginal cases had distant metastases at diagnosis (31.3% vs 22.0, p<0.001). After adjusting for stage, remote-living Aboriginal residents had higher risks of cancer death than Aboriginal residents of metropolitan areas. Non-Aboriginal cases had the lowest risk of cancer death. Retrospective staging proved to be feasible using registry data. Results indicated more advanced stages for Aboriginal than matched non-Aboriginal cases. Aboriginal people had higher risks of cancer death, which persisted after adjusting for stage, and applied irrespective of remoteness of residence, with highest risk of death occurring among Aboriginal people from remote areas.
Publisher: Elsevier BV
Date: 10-2022
Publisher: Wiley
Date: 26-10-2023
DOI: 10.1111/IJN.13115
Abstract: This study aimed to investigate the levels of nurses' organizational citizenship behaviour and the associations between job burnout and ethical climate with organizational citizenship behaviour. Organizational citizenship behaviour improves adverse outcomes led by nursing shortage. However, the associations between three dimensions of job burnout and organizational citizenship behaviour are inconsistent, and little is known about whether ethical climate is related to organizational citizenship behaviour in nurses. In this cross‐sectional study, 1157 nurses were selected using convenience s ling from April to October 2019. Self‐report surveys assessed nurses' organizational citizenship behaviour, emotional exhaustion, depersonalization, personal accomplishment and perceptions of ethical climate. Mean organizational citizenship behaviour was high among nurses. The regression model showed that job burnout and ethical climate explained an additional 38.6% of the variance in organizational citizenship behaviour over and above sociodemographic factors, with 44.9% of the total variance. Nurses' organizational citizenship behaviour was at a relatively high level. Depersonalization was negatively associated with organizational citizenship behaviour while personal accomplishment and ethical climate were positively related to organizational citizenship behaviour. Therefore, nurse leaders are encouraged to take measures to help nurses reduce job burnout and create a favourable ethical climate for increasing nurses' organizational citizenship behaviour.
Publisher: Australian Nursing and Midwifery Federation
Date: 16-04-2020
DOI: 10.37464/2020.372.74
Publisher: JMIR Publications Inc.
Date: 28-01-2020
DOI: 10.2196/14544
Abstract: Core outcome sets seek to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. The problems arising from a lack of outcome standardization in population-based cancer survivorship research indicate the need for agreement on a core set of patient-reported outcomes (PROs) to enhance data quality, consistency, and comparability. This study aims to identify a core set of PROs, representing the most important issues impacting on cancer survivors' long-term health, functioning and quality of life, to inform population-based research on cancer survivorship. In Phase I, a list of all potentially important outcomes will be generated through focus group discussions with cancer survivors and a review of measures for assessing quality of life in cancer survivorship. The consolidated list will be advanced to Phase II, where a stakeholder consensus process will be conducted with national experts in cancer survivorship to refine and prioritize the outcomes into a core outcome set. The process will consist of a two-round Delphi survey and a consensus meeting. Cancer survivors, oncology health care professionals, and potential end users of the core outcome set with expertise in cancer survivorship research or policy will be invited to participate. In Phase III, recommended measures for assessment of the core outcome set will be selected with advice from experts on the assessment, analysis, and interpretation of PROs. As of April 2019, data collection for Phase I is complete and data analysis is underway. These data will inform the list of outcomes to be advanced into Phase II. Recruitment for Phase II will commence in June 2019, and it is anticipated that it will take 6 months to complete the three-step consensus process and identify a provisional core outcome set. The study results are expected to be published in early 2020. Expert consensus-driven recommendations on outcome measurement will facilitate the inclusion of survivorship outcomes considered important by cancer survivors and health professionals in future research. Adoption of the core outcome set will enable comparison and synthesis of evidence across studies and enhance the quality of PRO data collected in cancer survivorship research, particularly when applied to address macro-level questions. DERR1-10.2196/14544
Publisher: Rosemary Bryant AO Research Centre
Date: 2020
DOI: 10.25954/NK9G-1A75
Publisher: Maad Rayan Publishing Company
Date: 29-06-2023
DOI: 10.34172/JQR.2023.14
Abstract: Background: Respecting the human dignity of patients is one of the most important ethical requirements of the medical and nursing profession. Respect for dignity in all patients, especially in patients with breast cancer, is important because of the profound and lasting effects of this disease on patients. This study aimed to understand the perspective of patients with breast cancer on the concept of patient dignity from June 2020 to December 2020 in Iran Mehr Hospital (Radiotherapy and Oncology Center) in Birjand. Methods: This study was conducted using a qualitative approach. The data were collected through semi-structured in idual interviews and analyzed using qualitative content analysis. The data were saturated after interviewing 16 patients with breast cancer who were selected using purposive s ling from June 2020 to December 2020. The main interview question was, "What does ‘dignity’ mean to you based on your experiences during your time with cancer?" The data elicited from the interviews were analyzed using content analysis via MAXQDA 2012 software. Results: Analysis of the patients’ statements and experiences of maintaining dignity revealed three main themes. The first main theme was respect for human values, which included the subthemes of personal privacy, avoiding curiosity, confidentiality of information, and use of same-sex caregivers. The second main theme was psychological support, which included the subthemes of spousal and family empathy and support, understanding the patient’s concerns and preoccupations, resentment of pity, and disclosing cancer diagnosis. The third main theme was socioeconomic support, which included the subthemes of spousal and family financial support, financial aid by support organizations, and community awareness. Conclusion: Receiving care by respecting dignity is the right of every patient. Since patients with cancer are more vulnerable, it can be argued that maintaining the dignity of these patients is more important than other patients due to the nature of the disease and the long-term involvement of patients with the disease.
Publisher: Informa UK Limited
Date: 02-01-2023
Publisher: Elsevier BV
Date: 09-2023
Publisher: Informa UK Limited
Date: 13-01-2023
Publisher: Springer Science and Business Media LLC
Date: 14-06-2019
Publisher: JMIR Publications Inc.
Date: 31-08-2023
DOI: 10.2196/47717
Abstract: This co-design research method details the iterative process developed to identify health professional recommendations for the graphical user interface (GUI) of an artificial intelligence (AI)–enabled risk prediction tool. Driving the decision to include a co-design process is the belief that choices regarding the aesthetic and functionality of an intervention are best made by its intended users and that engaging these users in its design will promote the tool’s adoption and use. The aim of this research is to identify health professional design and uptake recommendations for the GUI of an AI-enabled predictive risk tool. We will hold 3 research phases, each consisting of 2 workshops with health professionals, between mid-2023 and mid-2024. A total of 6 health professionals will be sought per workshop, resulting in a total enrollment of 36 health professionals at the conclusion of the research. A total of 7 workshop activities have been scheduled across the 3 workshops these include context of use, notifiers, format, AI survey–Likert, prototype, AI survey–written, and testing. The first 6 of these activities will be repeated in each workshop to enable the iterative development and refinement of GUI. The last activity (testing) will be performed in the final workshop to examine health professionals’ thoughts on the final GUI iteration. Qualitative and quantitative results data will be produced from tasks in each research activity. Qualitative data will be examined through inductive thematic analysis or deductive thematic analysis in accordance with the Nonadoption, Abandonment, and Challenges to the Scale-up, Spread, and Sustainability (NASSS) framework visual data will be examined in accordance with “framework of interactivity ” and quantitative data will be examined using descriptive statistics. Project registration with the Australia and New Zealand Clinical Trial Registry has been requested (#384098). Finalized design recommendations are expected in early to mid-2024, with a results manuscript to be submitted in mid-2024. This research method has human research ethics approval from the South Australian Department of Health and Wellbeing (#2022/HRE00131) as well as from the Human Research Ethics Committee of the University of South Australia (application ID#204143). Understanding whether an intervention is needed in a particular situation is just the start designing an intervention so that it is used within that situation is paramount. This co-design process engages end users to create a GUI that includes the aesthetic and functional details they need in a manner that aligns with their existing work practices. Indeed, interventions that fail to do this may be disliked, and at worst, they may be dangerous. PRR1-10.2196/47717
Publisher: Rosemary Bryant AO Research Centre
Date: 2019
DOI: 10.25954/SPY3-D417
Publisher: Wiley
Date: 27-05-2002
DOI: 10.1046/J.1440-172X.2002.00357.X
Abstract: This study aimed to identify the lived experience of patients with implantable cardioverter defibrillators (ICD) and their families. The methodology used was interpretative phenomenology. Unstructured interviews were conducted with three family members and three ICD recipients. Using a methodological approach outlined by van Manen, the participants transcribed texts were analysed looking for similar concepts and ideas that developed into themes that explicated the meaning of this phenomena. The themes that emerged were: dependence, which encompassed their perceptions about the life-saving device the memory of their first defibrillation experience lifestyle changes, which incorporated modification techniques lack of control, which highlighted feelings such as fear, anxiety and powerlessness mind game, which illustrated psychological challenges and the issue of security, demonstrating how 'being there' and not 'being there' impacted on their everyday lives. The long-term outcomes of living with an ICD are important considerations for all health-care providers. This research highlights the everyday activities of recipients, the lifestyle changes they have made, the emotional significance of the device and the psychological coping strategies that the participants have adopted. The findings of this research will allow health-care professionals to be better prepared to provide education and support for ICD recipients and their families in regards to issues related to insertion of the device during the postinsertion recovery period and for long-term management after hospital discharge.
No related grants have been discovered for Marion Eckert.