[A version of this item appears in: Dementia: the Latest Evidence Newsletter (RWHT), Volume 2 Issue 10, May 2012].
This NIHR review provides an overview of the numerous research methods which have been used in end of life care research and discusses their relevance for social care. The aim is to supply the “context” whereby policy-makers and service providers can better understand end of life care research in social care. Examples from relevant research are reviewed to help the reader consider the advantages and disadvantages of different research methods and tools. Ethical challenges and practical issues likely to occur during such research are discussed. Some proven strategies, and information sources for support, are recommended.
This report recognises that, as the population ages, increasing numbers of people are likely to live and die with long-term conditions such as organ failure and dementia. A number of studies relating to care at the end of life for people with dementia are referenced and discussed.
Some general conclusions are:
- More research is needed on the costs and resource use involved for end of life care in social care settings.
- A robust evidence base is required to support the development of good social care practice in end of life care, to complement palliative care research.
- Research approaches based on narrative and online data sources, about the experience of dying and access to support, might be of value.
- It is important to consider complex interactions between different groups and health and social care professionals, and the wider social context of EoL care.
- Research in end of life of care would benefit from social care-appropriate theoretical frameworks.
Read more: SSCR Methods Review: End of Life Care.
The methodological approaches considered in this review include: qualitative approaches to end of life care research; intervention-based research to test effectiveness in end of life care; cluster randomised controlled trials; complex interventions; observational studies; multi-site evaluations; appreciative inquiries; longitudinal research; cohort research; mixed methods; case studies; interviews and questionnaires; nominal group techniques (NGT); dyads and triads; focus groups; biographical narratives; diaries and letters; arts-based techniques; and case notes reviews. Other sources of data specific to end of life care might involve secondary and official data sources.
Goodman, C. Froggatt, K. [and] Mathie, E. (2012). End of life care: methods review. London: NIHR [and] London School of Economics and Political Science; School for Social Care Research, April 2012. ISBN: 9780853284444. 33p.