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Frontline direct care workers experiences of providing domiciliary care towards the end of life: a systematic literature review and narrative synthesis

Research output: Contribution to conference Poster

Published
Publication date19/05/2017
<mark>Original language</mark>English

Abstract

Background

An ageing population heralds a greater demand for palliative and end of life care. Many people approaching the end of life rely on domiciliary care services provided by a para-professional workforce. Despite low pay and status, these workers provide personal and social care to people at a difficult time in their lives. Little is known about the impact of this work on the workers themselves or how they are trained, supervised and supported.

Methods

A systematic search was conducted in six databases. All study designs were included. Titles and abstracts of retrieved papers were screened by two researchers working independently. Findings were analysed using a narrative synthesis approach.

Results

Of 747 retrieved references, 12 papers from six countries in four continents were selected for inclusion in the review. Few studies dealt directly with the experiences of direct care workers themselves. Most considered them as part of multi-professional care networks with many focusing on issues relating to the professionals involved in the teams under consideration. Internationally and within nations, workers job titles varied and in some cases obscured job role. Where this role was clear, there was much overlap between domestic, personal, social and health related tasks. There was little evidence of a consistent approach to training and supporting staff involved in care towards the end of life and a paucity of ‘voice’ for these workers in published studies.

Conclusion

The experiences of direct care workers in palliative homecare is poorly studied. There is considerable variability in how workers are named, the work they do, and who they report to. More research that privileges the voice of these workers and identifies the impact on them of caring for those approaching the end of life is required so that employing agencies may consider how to improve the training, supervision and support of this essential frontline workforce.