Robertson, S;
Cooper, C;
Hoe, J;
Lord, K;
Rapaport, P;
Livingston, G;
(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.
10.1002/gps.5193.
Preview |
Text
Cooper_Why do staff and family think differently about quality of life in dementia_AAM.pdf - Accepted Version Download (615kB) | Preview |
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.
| Type: | Article |
|---|---|
| Title: | Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1002/gps.5193 |
| Publisher version: | https://doi.org/10.1002/gps.5193 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| Keywords: | Care Homes, Carer, Dementia, Quality of Life |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10079972 |
Archive Staff Only
 |
View Item |
