The role of 'familiarity' and 'normality' in supporting transition to end of life care in paediatric oncology: A qualitative study.

ABSTRACT

AIM: The aim of this study was to explore factors that helped when a child with cancer transitioned to end of life care in a hospital setting. DESIGN: Qualitative exploratory design using reflexive thematic analysis. METHODS: In-depth, semi-structured interviews were carried out with 7 sets of bereaved parents and 10 health professionals from one specialist paediatric oncology centre. Results were shared with professionals to help shape services in a new children's hospital. RESULTS: Three themes were identified 'change and facing the unknown', 'the comfort of feeling normal' and 'knowing and being known'. Bereaved parents described a gradual awareness of the deterioration of their child's condition and the need for trust in health professionals. Professionals described the process as challenging but were guided by the needs of children and parents. Supportive and trusting relationships with professionals helped parents to cope with the transition. CONCLUSION: We identified practices that helped create a culture that supported parents and professionals involved in caring for children facing death from cancer. These were rooted in feeling supported and working to provide the best end of life care for children. SUMMARY STATEMENT Given that the death of a child is a uniquely challenging event, this study indicates that the clinical setting can assist via the promotion of familiarity (supporting families over time) and normality (allowing family-focused activities). These were helpful to parents and to professionals. However, professionals need emotional support when working with these families. REPORTING METHOD: The study adhered to the Consolidated Criteria for Reporting Qualitative Research. PATIENT OR PUBLIC CONTRIBUTION The project steering group included one bereaved parent (who was not involved in the study), one consultant paediatric oncologist and one hospital chaplain.