An evaluation of By My Side: Peer support in written form is acceptable and useful for parents bereaved by childhood cancer

Abstract Context Cancer is the leading cause of non-accidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalise grief experiences and reduce parents' isolation. It is available free of charge. Aim This project evaluated the acceptability, relevance, emotional impact and usefulness of By My Side. Design Bereaved parents and healthcare professionals provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyse the data. Setting /participants: We mailed a study invitation and evaluation questionnaire to parents and healthcare professionals who ordered a copy of By My Side. Results Twenty-four bereaved parents and seven healthcare professionals provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was ‘just right'. 75% of parents reported that the book made them feel that their reactions to their child's death were normal/appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and healthcare professionals reported that the book provided useful information about grief. 83.4% of parents and 85.7% of healthcare professionals would recommend it to others. Conclusion By My Side was acceptable and useful to bereaved parents and healthcare professionals. Results suggest that peer support in written form may help normalise aspects of grief and comfort parents bereaved by childhood cancer.