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Setting research priorities for palliative and end-of-life care: a James Lind Alliance Priority Setting Partnership Refresh

Por: Hudson · B. F. · Ashcroft · P. · Bedford · J. · Bush · J. · Bowers · B. · Dawson · A. · Hussain · J. · Holmes · S. · Kumar · R. · Minton · O. · McCullagh · A. · Nicoll · L. · Penny · A. · Rabbitte · M. · Reece · A. · Robinson · D. · Simpson-Greene · C. · Taylor · M. · Best · S. L.
Background

Palliative care supports the physical, emotional, social and spiritual needs of people with serious life-limiting illness. Future research must align with the priorities of people approaching the end of their lives, and those close to them.

Aims

To undertake a refresh of the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership, to identify and prioritise areas for future research.

Design

The James Lind Alliance process was applied, between May 2023 and February 2025. An initial online survey collected areas for future research from participants. These were synthesised into a long list of questions and shortlisted through a second online survey. Final ranking of priorities was achieved using an adapted Nominal Group Technique within a prioritisation workshop.

Participants

People living with serious life-limiting illnesses, carers, friends and family members supporting them, bereaved people, health and social care professionals, volunteers working in palliative and end-of-life care and members of the public.

Results

1032 and 626 responses were received to survey 1 and 2, respectively. 20 people with lived and professional experience attended the prioritisation workshop. An updated list of 24 priorities for palliative and end-of-life care research was produced.

Conclusion

The priorities reflect the range of issues shaping end-of-life experiences and serve as a call to action for researchers and funders.

What are the Aboriginal worldviews of disability in the Fitzroy Valley? Aboriginal Participatory Action Research to develop strategies for decolonising disability services

Por: Stubbs · T. · Bedford · M. · Bear · E. · Carter · E. · Pickard · A. · Davies · J. · Thomas · S. · Martiniuk · A. L. C. · Elliott · E. J. · Rice · L. J.
Objectives

Aboriginal and Torres Strait Islander people living with disability have unequal access to health and disability support services. The impacts of colonialism and the deficit-based, Western medical model of disability have been identified as barriers to services in remote Aboriginal communities. This study explored different perceptions of disability and identified strategies to help bridge the gap between Aboriginal community members in the Fitzroy Valley and Western health and disability support services.

Design

Aboriginal Participatory Action Research approach with in-depth interviews. Transcripts were analysed using reflexive thematic analysis. Preliminary results were presented to community representatives for contextualisation, validation and to co-design recommendations.

Setting

Fitzroy Valley in the Kimberley region, Western Australia.

Participants

Aboriginal community members with lived experience of disability (n=7) and health and disability support service providers (n=12).

Results

Eight themes were identified: (1) Aboriginal kinship systems are a community strength and support for people living with disability; (2) Aboriginal people from the Fitzroy Valley perceive disability as a social construct; (3) Western medical model of disability differs from Aboriginal perceptions of disability; (4) Aboriginal people from the Fitzroy Valley perceive different types of disabilities in various ways; (5) good awareness of fetal alcohol spectrum disorder in the Fitzroy Valley, but more education is wanted; (6) focus on functional needs and supports for disability; (7) barriers to disability services and (8) decolonise disability services. Community co-designed recommendations focus on centring the Aboriginal worldviews of disability in the Fitzroy Valley.

Conclusions

Decolonising disability services is needed to improve access for Aboriginal and Torres Strait Islander communities. This should involve adapting the current Western medical model of services to enable strengths-based diagnostic and support services that align with Aboriginal and Torres Strait Islander kinship systems, cultures and ways of being. Community leadership must play a central role in this shift.

Effects of interventional public health laws and regulations intended to reduce gambling-related harms: a realist review study protocol

Por: Fisher · M. · Piper · T. · Mavi · S. · Nambiar · J. · Sharma · P. K. · Kirby · J. · Melendez-Torres · G. J. · Montgomery · P. · Fewell · G. · Chandan · J. S. · Bedford · K.
Introduction

Gambling is now widely acknowledged to be a major public health (PH) issue. The Office for Health Improvement and Disparities conservatively estimated that gambling harm is associated with an annual cost of £1.05–£1.77 billion in England alone. Marionneau et al have categorised gambling harms into seven themes: (1) financial, (2) relationship/conflict, (3) emotional and psychological (mental health), (4) health decrements (physical health), (5) employment/education, (6) cultural and (7) criminal activity. In this understanding, gambling harms are not restricted to individual experiences: they also impact families, the wider community and society, and hence they require a whole systems, PH approach, anchored in population-level interventions to reduce harms. We aim to identify the effects of interventional PH laws and regulations on the harms associated with gambling.

Methods and analysis

We limit our focus to interventional PH laws and regulations within a comprehensive search of scientific and legal databases, grey literature and books. Following Population, Intervention, Comparator, Outcome, Study, Timing inclusion criteria, evidence will be screened and appraised in Covidence by two reviewers (MF and TP). Included evidence will be analysed and synthesised using a narrative synthesis approach. Methodological quality will be appraised using the relevant risk of bias tool. Randomised controlled trials will be assessed using the Cochrane risk of bias tool (RoB2), Risk Of Bias In Non-randomised Studies - of Interventions (ROBINS-I) will be used for other non-randomised studies. Qualitative studies will be appraised using the EPPI reviewer software for systematic reviewing.

Ethics and dissemination

The review protocol is registered with PROSPERO (International prospective register of systematic reviews) at the National Institute for Health Research and the Centre for Reviews and Dissemination (CRD) at the University of York (CRD42024574502). We aim to define a theory of change and produce a context-mechanism-outcome framework with relevant experts using the findings. We plan to disseminate the findings through peer-reviewed publications, meetings with relevant experts and international conference presentations.

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