ArticleBMJ supportive & palliative care2019
Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers.
Article in BMJ supportive & palliative care, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
6 citing papers in PubMed, 20 citations in OpenAlex.
- Ethical challenges in sensitive research: a reflective narrative on managing the clinician-researcher dual role.BMC palliative care · 2025Article
- Ambitions for palliative and end of life care: mapping examples of use of the framework across England.BMC palliative care · 2023Article
- Using participatory research to co-produce an education and training e-resource to support care home staff to meet the sexuality, intimacy and relationship needs of care home residents with and without dementia.Frontiers in dementia · 2023Article
- Factors influencing adult carer support planning for unpaid caregiving at the end of life in Scotland: Qualitative insights from triangulated interviews and focus groups.Health & social care in the community · 2022Article
- Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review.Palliative medicine · 2019Review
- Development of an eHealth information resource for family carers supporting a person receiving palliative care on the island of Ireland.BMC palliative care · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 4 institutions in 1 country.
Funding
Abstract
backgroundFamily carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers.
objectivesTo produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers. PROCESS OF DEVELOPMENT: Participatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers. FINAL TRAINING PROGRAMME: The outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers.The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator's notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable.
conclusionThe programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.