Introduction

There is increasing interest in end of life care in social care settings and the contribution of social care practitioners and others, particularly those supporting very old people. However, the majority of end of life care research takes place in health care settings, such as hospitals, and/or is led by health professionals or health-based researchers looking at health-related issues.

Objectives

The aim of this review was to develop a resource and reference point for researchers who are about to undertake social care research with adults who are living with life-limiting illnesses or are dying, and with carers, family members and practitioners that support them in a range of settings.

It aimed to provide an overview of the range of research methods that have commonly been used in end of life care research and their relative advantages and disadvantages, and a discussion of the particular ethical challenges and practical issues that may arise when undertaking research in this area, along with some solutions to these challenges.

Methods

This review draws on the authors’ experiences of researching sensitive subjects in social care environments, specifically care homes.

It is informed by a scoping of journal and web published materials related to social care and health, using databases. To manage the size and diversity of the literature the focus was on seminal research papers and those that discussed methodological issues as part of their findings and reviews of evidence.

Findings

This review provides an overview of the range of research methods that have been commonly used in end of life care research and their relevance for social care. It provides a policy and service context for understanding end of life care research in social care and, using examples from relevant research, considers the advantages and disadvantages of different research methods and tools. The particular ethical challenges and practical issues that may arise are discussed along with some strategies and sources of support to address them.

End of life care research methods
( https://www.sscr.nihr.ac.uk/wp-content/uploads/SSCR-methods-review_MR012.pdf )
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