Lurie, P; (2014) Coping with a childhood brain tumour: A qualitative analysis of parents’ experiences. Doctoral thesis (D.Clin.Psy), UCL (University College London).

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Abstract

Pre-existing research on the stress reactions of caregivers of children with brain tumours was reviewed. Four overarching stress reactions were notably present for parents: burden from adjusting to changes in routine, burnout from fatigue and emotional exhaustion, residual stress from diagnosis and treatment, and future-oriented uncertainty. There is evidence to suggest that psychosocial implications for parents are a concern and that they require support from professionals long into the survival period. As part of the empirical research, ten parents of paediatric brain tumour survivors were retrospectively interviewed about their experiences of coping from diagnosis through to the survival period. Interviews were transcribed and four domains were devised from a thematic analysis: Focusing on the here-and-now in which parents concerned themselves with taking one day at a time rather than thinking about what may arise later; Overcoming helplessness reflected the desire to provide care-giving duties; Different needs met across the system included emotional bonding with other parents on the ward, whilst wanting family to offer respite; Finding a new normal featured in the survival period when parents reflected on new values for the family. Coping mechanisms were seen as a process, changing dependant on the time period. The literature review and empirical study are rounded off by a critical appraisal of the research process, which focuses on the clinical utility of working qualitatively with a paediatric brain tumour population, a discussion of homogeneity versus heterogeneity when sampling, and an appraisal of thematic analysis.

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