Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes

Robertson, Sarah, Cooper, Claudia, Hoe, Juanita ORCID: https://orcid.org/0000-0003-4647-8950, Lord, Kathryn, Rapaport, Penny and Livingston, Gill (2019) Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes. International Journal of Geriatric Psychiatry, 34 (12). pp. 1784-1791. ISSN 0885-6230

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Abstract

Background
Quality of life is important especially in incurable illness. In dementia, we often need proxy reports of quality of life, but we know little about how individuals make their judgements. In care homes, proxies may be staff providing care or relatives, but staff rate quality of life differently to family. To our knowledge, no one has explored this qualitatively, so we used qualitative interviews to explore why staff and family think differently about quality of life.

Methods
We interviewed 12 staff and 12 relatives who had provided proxy ratings of quality of life for people living with dementia in care homes in the Managing Agitation and Raising Quality of life (MARQUE) study. We asked why they had rated the resident's quality of life as “Very Good, Good, Fair, or Poor.” Using thematic analysis, we compared staff and relatives' proxy responses.

Results
For staff, the concept of quality of life was often viewed synonymously with quality of care, influenced by their sense of responsibility and informed by their professional understanding. For relatives, quality of life was often judged in relation to how the person with dementia lived before diagnosis and was influenced by their perception of loss for the person with dementia and their own adjustment.

Conclusions
Proxy reports were influenced by rater's own contexts and experiences. This can enhance our understanding of widely used research tools, aid the evaluation of intervention outcomes, and indicate possible targets for improving perceived and actual quality of life of people with dementia.

Item Type: Article
Additional Information: This is the peer reviewed version of the following article: [Robertson, S, Cooper, C, Hoe, J, Lord, K, Rapaport, P, Livingston, G. Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes. Int J Geriatr Psychiatry. 2019; 34: 1784– 1791. https://doi.org/10.1002/gps.5193], which has been published in final form at [Link to final article using the DOI]. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions. This article may not be enhanced, enriched or otherwise transformed into a derivative work, without express permission from Wiley or by statutory rights under applicable legislation. Copyright notices must not be removed, obscured or modified. The article must be linked to Wiley’s version of record on Wiley Online Library and any embedding, framing or otherwise making available the article or pages thereof by third parties from platforms, services and websites other than Wiley Online Library must be prohibited.
Uncontrolled Keywords: care homes, carer, dementia, quality of life
Subjects: Medicine and health > Health promotion and public health > Care homes
Medicine and health > Clinical medicine > Dementia
Medicine and health > Person centered care
Related URLs:
Depositing User: Juanita Hoe
Date Deposited: 02 Nov 2021 11:21
Last Modified: 23 Nov 2021 20:25
URI: http://repository.uwl.ac.uk/id/eprint/8392

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