Abstract
Background: The older population is rapidly growing; alongside this, frailty and chronic illness are increasing in prevalence. Frailty and related syndromes are associated with a complex illness trajectory, episodes of acute illness, higher healthcare utilisation, and poorer outcomes. As a result palliative care need is increasing in older populations, with projections conducted in this thesis (background paper 1) indicating a 42% growth in need by 2040 in England and Wales. Person-centred models of care are required to meet the needs of the growing frail older population. Delivery of person-centred care in line with care preferences requires an understanding of how preferences are influenced. The systematic literature review conducted in this thesis (background paper 2) found that factors related to the illness, individual, and family and care context influence care preferences in older people with advanced illness. However the influences on care preferences in the context of recent acute illness, and the stability of care preferences following acute illness, are important evidence gaps.Methods: Prospective cohort study using a convergent mixed-methods design comprising concurrent questionnaires and interviews, with six-month follow-up. People aged ≥65, scoring ≥5 on the Rockwood Clinical Frailty Scale, and who had experienced one unplanned hospitalisation or two acute care attendances in the last six months were recruited. Nominated informal carers were included. Participants answered questionnaires regarding their preferences at baseline, 12 weeks and 24 weeks. Specifically they were asked to rate the importance of six preferences for the purpose of care: ‘to extend life’, ‘improve quality of life’, ‘remain independent’, ‘be comfortable’, ‘support “those close to me”’, and ‘to stay out of hospital’, and were then asked to rank which was most important. Serial in-depth qualitative interviews were undertaken with a purposively selected maximum-variation sub-sample of participants and carers. The interview topic guide explored illness and care experiences, care preferences, and future concerns. The mixed methods design included descriptive quantitative analysis and thematic qualitative analysis. Findings were integrated during analysis by exploring in the qualitative interviews possible influences on the preference stability patterns identified in quantitative analysis. Models of influences on preferences and preference stability were developed from the integrated findings. NHS ethical approval was granted (ref: 16/LO/2048).
Date of Award | 2019 |
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Original language | English |
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Supervisor | Fliss Murtagh (Supervisor) & Irene Higginson (Supervisor) |