Understanding the spiritual and emotional needs of siblings of chronically sick children with a rare disease

Abstract

Background Family morbidity is a concern in the treatment of paediatric patients but guidance and research lacks reference to siblings. Siblings of chronically sick children are at risk of adverse outcomes if needs are not recognized and met. Positive outcomes are possible with appropriate support. Objective To identify emotional and spiritual needs of children and young people (CYP) with a sibling with a chronic disease. Method A mixed methods study including: validated, UK normed 52-item Kidscreen questionnaire for siblings, proxy version for parents; interviews of each sibling and focus groups drawn from these siblings were recorded, transcribed and subjected to iterative thematic analysis. The setting was Birmingham Children’s Hospital NHSFT, UK. Participants were 16 siblings and 16 parents of children with a chronic rare disease aged 8–16, one specialist nurse. Results The mean of parents’ scores on the questionnaire rated the sibling below the 50th percentile on all ten areas covered. A mean of 34.9 (median 31) for home life shows a significant impact of having a sick child. Siblings consistently rated themselves higher than parents. From the thematic analysis, largely negative consequences of having a sick sibling appeared in all domains. Coping mechanisms were in two main categories: 1. Creative and leisure activities, 2. Family and friends. Discussion and Conclusion Having a chronically unwell sibling negatively impacts global wellbeing, and, specifically in this study, their emotional and spiritual development. Further research will be needed to determine if this can be ameliorated