Deavin, Toni and Greasley, Pete and Dixon, Clare and Davies, Jenny and Smith, Ian (2017) A qualitative exploration of family members’ experiences of paediatric chronic illness. PhD thesis, Lancaster University.
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Abstract
This thesis comprises of two parts aiming to explore family members’ experiences of living with a child who has a paediatric chronic illness (PCI) and one part that also reflects on the research process. The systematic review utilised a thematic meta-synthesis approach to analyse 12 studies, consulting 373 healthy siblings regarding their experiences of living with a PCI. The synthesis resulted in two themes. The first theme was ‘Changing relationships’ which had two sub-themes: ‘Changing family relationships’ and ‘Changing relationship to self’. The second theme was ‘Managing changes’ which had three sub-themes: ‘Coping and acceptance’, ‘Support from friends peers and support groups’ and ‘Negative reactions from others’. Siblings were found to adopt new roles, new skills and eventually develop a new ‘prosocial’ identity in order to find more socially acceptable ways to meet their needs and the needs of the family. The research paper explored parents’ stories of adjustment to having a son with Duchenne Muscular Dystrophy. Narrative analysis was applied to seven semi-structured interviews of five women and two men. The analysis identified key narrative elements from their stories that were then collated into demographics and contextual data, individual summary stories and three common chapters: ‘Investigating and fighting: “Something’s not right”’; ‘Making meaning of the diagnosis’; and ‘Living a normal life’. Parents explored narratives relating to acute and chronic illness, altering their identity from parent to carer and providing a normal and happy life for their son. Finally, a critical appraisal of the research reflected on the use of qualitative research in health settings and how the associated issues applied to this thesis. Epistemology was used as the lens to view how decisions in the research were made, in particular highlighting the importance of quality, the debate regarding validity and identifying relevant future research.