Young people’s experiences of sibling cancer treatment

Abstract

The first chapter is a systematic review of qualitative literature that explores the lived experiences of young sibling donors. Five electronic databases were searched (PsycINFO, MEDLINE, CINAHL, Web of Science, and ProQuest) with publication dates spanning from first publication until 2021. Fourteen papers that contained qualitative findings about the experiences of young sibling donors (≤25 years at the time of donation) were eligible for inclusion in this review. Thematic synthesis was used to explore the qualitative findings of these papers and generate novel interpretations from the data. Three themes were generated: perceived choice, perceived value, and “I didn’t feel very prepared”. Young sibling donors commonly felt unprepared for the emotional, psychological, and physical impacts of the donation process. A range of emotions were reported, including fear, anxiety, anger, jealousy, guilt, and pride. Many young sibling donors appeared to feel deprioritised within their families. There was variability in whether young sibling donors felt they could exercise choice in deciding to get tested and donate to their sibling. Recommendations for healthcare professionals include appropriate management of young sibling donor’s expectations of the donation process, through access to psychological support and developmentally appropriate information about getting tested and donating.
The second chapter is an empirical paper that explores young people’s experiences of sibling cancer treatment, with a focus on unmet needs for psychological support. Seven interviews were conducted with young people aged 11-18, whose sibling had been treated for cancer in the UK. Data were analysed using reflexive thematic analysis. Four themes were generated: processing the unthinkable, watching my sibling struggle, distance and closeness, and “it won’t ever go back to the way it was before”. Developmental age and degree of access to cancer-related information may influence how young people of different ages experience and relate to feelings of fear and uncertainty around their sibling’s cancer diagnosis. It was important for young people to have someone to talk to about their experiences throughout their sibling’s cancer treatment. A need was identified for psychological support for young people to continue past their sibling’s discharge from treatment. Young people need more access to developmentally appropriate cancer-related information from a range of sources. As young people may be predisposed to aligning their wellbeing with that of their sibling, there is a role for healthcare professionals to centre young people’s needs and to encourage young people’s regular engagement with psychological support, regardless of their sibling’s health. Psychological support and cancer-related information should be available to young people consistently, from diagnosis until after their sibling is discharged from cancer treatment.

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ORCID for Pete Lawrence: orcid.org/0000-0001-6181-433X

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