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Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers
  1. Glenys Caswell1,
  2. Beth Hardy2,
  3. Gail Ewing3,
  4. Sheila Kennedy4 and
  5. Jane Seymour5
  1. 1 School of Health Sciences, University of Nottingham, Nottingham, UK
  2. 2 Department of Health Sciences, University of York, York, North Yorkshire, UK
  3. 3 Centre for Family Research, University of Cambridge, Cambridge, UK
  4. 4 School of Health and Related Research, University of Sheffield, Sheffield, UK
  5. 5 School of Nursing and Midwifery, University of Sheffield, Sheffield, UK
  1. Correspondence to Dr Glenys Caswell, NCARE, School of Health Sciences, University of Nottingham, Queen’s MedicalCentre, Nottingham, NG7 2HA, UK; glenys.caswell{at}nottingham.ac.uk

Abstract

Background Family 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.

Objectives To 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.

Conclusion The programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.

  • carer support
  • end of life care
  • family carers
  • participatory action research
  • training programme

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Footnotes

  • Contributors All named authors contributed to the project and to the writing of the paper. All authors approved the final version. GC worked as a researcher on the project, liaising with research partners, developing and piloting the training programme. She took the lead in drafting this paper, approved the version to be published and agreed to be accountable for the work. BH worked as a researcher on the project, liaising with research partners, developing and piloting the training programme. She has revised the paper, approved the version to be published and agreed to be accountable for the work. GE made a substantial contribution to the design of the project and worked on the development and piloting of the programme. She has revised the paper, approved the version to be published and agreed to be accountable for the work. SK made a substantial contribution to the design of the project and worked on the development and piloting of the programme. She has revised the paper, approved the version to be published and agreed to be accountable for the work. JS made a substantial contribution to the design of the project and worked on the development and piloting of the programme. She has revised the paper, approved the version to be published and agreed to be accountable for the work.

  • Funding This work was supported by the Dimbleby Marie Curie Grants Scheme, grant DCMC-RF-12-08.

  • Competing interests None declared.

  • Ethics approval University of Nottingham, Faculty of Medicine and Health Sciences Research Ethics Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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