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Patient perceptions, experiences and expectations of recovery and prognosis in long-term conditions

Background: Whilst the experience of chronic physical conditions is well documented and has been recognised as relevant for health policy and practice little is known about notions of recovery and prognosis from the point of view of those with long-term physical health conditions. The extent to which people consider the future outcomes of their conditions is relevant to health policy which seeks to engage people in shared decision making, care plans, and self-management. This gap in knowledge about lay perceptions of recovery and prognosis becomes more pronounced when compared with literature from the mental health field in which recovery is one of the dominant foci, is comparatively well researched and in recent years has fed into policy and management approaches.Aims: The aim of the thesis is to explore perceptions of recovery and prognosis with people with long-term physical health conditions and to compare these with perspectives on recovery and prognosis apparent in the mental health field.Methodology: Using qualitative methods, a two phased approach to data collection and analysis was undertaken. Phase 1 used secondary data analysis with two existing datasets to examine whether notions of recovery and prognosis were implicit in narratives about the experience of illness. Phase 2 built on the findings from phase 1 and utilised longitudinal, primary data collection in the form of narrative interviews undertaken at two time points (baseline and 12 month follow-up). The analysis in both phases involved a cross case thematic analysis to look for commonalities and differences across individuals. Data from phase 2 were also subject to a narrative emplotment of individual stories which were used to capture the longitudinal changes in patient perspectives over time.Results: There were similarities with findings from the mental health field (recovery as a complex, nonlinear journey, the input from friends and family, notions of burden and the impact of condition on sense of self). However, there were nuanced differences in relation to physical health conditions which related to expectations about mortality, the experience of time, the extent to which narratives were future oriented and the experience of stigma. The dual focus on mental and physical health recovery proved useful for understanding those experiences of multiple morbidities. The results were used to develop a model of recovery narratives based on two dimensions (expectations and responsibility) which gave rise to four typologies of narratives. The aim of this model was to further highlight and summarise the themes arising from the data analysis.Discussion: The results of this study highlight the importance of understanding notions of recovery and prognosis in order to better understand the experience of illness and self-management. The thesis challenges the blanket use of health promotion strategies for those with and without chronic health conditions and supports a shift in policy focus from improved choice and autonomy to what Mol (2009) refers to as ‘enhanced care’.

Identiferoai:union.ndltd.org:bl.uk/oai:ethos.bl.uk:588163
Date January 2013
CreatorsBrooks, Helen
ContributorsRogers, Anne; Sanders, Caroline
PublisherUniversity of Manchester
Source SetsEthos UK
Detected LanguageEnglish
TypeElectronic Thesis or Dissertation
Sourcehttps://www.research.manchester.ac.uk/portal/en/theses/patient-perceptions-experiences-and-expectations-of-recovery-and-prognosis-in-longterm-conditions(ffd083bc-ad64-4fc3-9d22-9050aef29cb4).html

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