Abstract
Background: Little is known about the care experiences of young people living with multiple long term conditions (MLTCs) or of the care features that support them to live well. Applying Due-Christensen’s early adaptation framework and Bronfenbrenner’s ecological systems theory (EST), this thesis explores young people’s care experiences with the aim of identifying features that supported them to live well.Methods: A qualitative study involved a two phased telephone interview process with a purposive sample of 18-24 year-olds (n=19) living with at least two long-term conditions recruited from four GP practice patient lists across Brighton and Hove; in total 38 interviews were conducted typically lasting 40–85 minutes. Narrative data generated from audio interviews was inductively and deductively thematically analysed and counts of LTCs and time to diagnosis described.
Results: Participants were living with a combination of between two to seven comorbidities and morbidities; many (n=12) were living with complex multimorbidity. Anxiety and depression were the most prevalent morbidities (n=13) and comorbidities (n=9). For a number (n=9), the onset of their first symptoms started in childhood (<10 years of age) and most (n=13) were living with symptoms of ill health for several years before diagnosis. Thematic analysis generated nine subthemes and three overarching themes. They suggested the nature of the health condition and/or its symptom(s) presentation were associated with young people’s stigma experiences which were key to their reconstruction of identities, view of illness, learning, and behaviour adaptations.
Discussion: Delays in diagnosis, arguably the result of societal structures and processes (i.e. the macrosystem), contribute to the conditions for stigma to unfold in young people’s interactions with and between care professionals and their relational networks (i.e. the microsystem and mesosystem). Outgroup derogation and othering may explain experiences in the microsystem and mesosystem that give rise to the enacted stigma of stigmatisers and bystanders, and the felt, anticipated, and internalised stigma of those stigmatised. Young people’s access to similar others, validation of their sick role identities, and alleviation of the burden of illness seemingly moderated their stigma experiences by minimising the differences to their peers.
Conclusion: The onset of ill health symptoms prior to a formal diagnosis may initiate the early adaptation process for some young people. To moderate stigma experiences, the care management of children and young people should start early after symptom onset, be holistic in approach, and focus on strengthening similarities in peer role and social identities.
| Date of Award | Feb 2024 |
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| Original language | English |
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| Supervisor | Nigel Sherriff (Supervisor), Jorg Huber (Supervisor) & Anna Zoli (Supervisor) |