Skip to main content

Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes

Goodman, Claire M., Mathie, Elspeth, Cowe, Marion, Mendoza, Alex, Westwood, Daphne, Munday, Diane, Wilson, Patricia M., Crang, Clare, Froggatt, Katherine, Iliffe, Steve, and others. (2011) Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes. BMC Palliative Care, 10 (20). ISSN 1472-684X. (doi:10.1186/1472-684X-10-20) (KAR id:39068)

Language: English
Download (192kB) Preview
[thumbnail of 1472-684X-10-20.pdf]
This file may not be suitable for users of assistive technology.
Request an accessible format
Official URL


Background: Public involvement in research on sensitive subjects, such as death and dying, can help to ensure

and moderate the often unequal power relationship between researcher and participant. This paper describes the

and dying in care homes.

and change over one year, of older people resident in participating care homes in the East of England. Residents

semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg) contributed to

research process including the facilitation of discussion groups with residents.

positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration

of similar age to the residents and their involvement provided different and often more reflective insights of the

PIRg participation was not always negotiable, and this raised issues about power relationships within the team.

commitment to continue to support research with this older age group.

rates of other studies in care homes. It safeguarded residents during the conduct of research on a sensitive topic

by the PIRg. There were power differentials that persisted and affected PIRg participation. The study has showed

research may wish to elicit the views of focal participants in such studies about the mediation of research by

public involvement in research.

Item Type: Article
DOI/Identification number: 10.1186/1472-684X-10-20
Subjects: R Medicine > RC Internal medicine > RC952 Geriatrics
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Depositing User: Tony Rees
Date Deposited: 08 Apr 2014 12:09 UTC
Last Modified: 16 Feb 2021 12:52 UTC
Resource URI: (The current URI for this page, for reference purposes)
Wilson, Patricia M.:
  • Depositors only (login required):


Downloads per month over past year