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Developing capacity

Home Care End of Life Care

Purpose

This study explores the experiences of the homecare workforce providing people with dementia living in their own homes care up to the end of life. We know little about this workforce that can work in relatively isolated environments, with limited supervision and support and be dealing with the practical and emotional challenges of providing care to people in potentially difficult or distressing times.

Timescale

2015 – 2017

Research team

Jill Manthorpe (PI), Kritika Samsi, Valerie D’Astous, Ruth Adams (SCWRU), Tushna Vandrevala (Kingston University)

Funding 

Dunhill Medical Trust

Methods

The study has two phases: Phase 1 was a literature review scoping the existing evidence on this topic. Issues identified were included in the Interview Topic Guides. Phase 2 employs a qualitative framework analysis approach in face to face interviews with 40 homecare staff in London and South East England. Interviews topics include staff experiences of, beliefs and attitudes towards, and challenges in, providing end of life care to people with dementia living at home. We also explore staff techniques to cope with stress in order to identify protective and buffering factors.

Findings

The literature review revealed two overarching themes: role preparation and support; and impact of the work on homecare workers. The role of homecare workers supporting a person with dementia up to the end of life remains unclear yet contextual, and a need for informational, technical and emotional support is identified. Analysis of interviews transcripts is not yet complete.

Outputs

Papers for academic journals are being produced and professional press articles and accessible summaries of findings will follow. Stakeholder engagement workshops will be held to debate the relevance of the findings to national training programmes (under the Qualification and Credit Framework, including the Care Certificate).

Impact

Findings will be relevant to a wide range of audiences, including local and national policy makers, workforce and Human Resource specialists, academics, health and social care practitioners, trainers, as well as older people and carers.

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