Decision-making when a child with haematological malignancy relapses following haematopoietic stem cell transplantation: A meta-ethnographic review.

Purpose: Lived experience and decision-making processes for families, following relapse after haematopoietic stem cell transplant (HSCT) in children, are under-reported. This meta-ethnographic review aims to synthesize qualitative studies that investigate how families conceptualize and cope with difficult decision-making situations, which can include treatment following relapse or refractory disease, decision for HSCT, and clinical trial enrolment.

Methods: Qualitative synthesis was conducted using meta-ethnography. The search was executed across seven bibliographic databases. Initial screening did not identify any eligible studies addressing decision-making following relapse after HSCT. Qualitative studies that reported on parental, child, and healthcare professionals' decision-making in difficult situations were included. Potentially eligible studies, which included families of a child < 18 years of age, were retrieved in full for further review. Data abstraction and analysis involved considering and identifying constructs from included studies. Data were organized to show descriptions and patterns of content, which was then summarized to show key patterns in content and concepts.

Results: Of 4355 unique references identified, 23 were included from 67 retrieved in full. Synthesis led to the emergence of two concepts: (1) precision in adapting to family needs and (2) communication and information to help prevent decision regret.

Conclusion: As treatment for relapse following HSCT becomes more complex, families will have greater choices with unclear outcomes for their child. Future research should focus on investigating their lived experience. Greater understanding of the experience when a child with haematological malignancy relapses following HSCT will assist in improving care for these families, both in the short-term and in the psychological well-being of those involved in making these difficult decisions.