Abstract
OBJECTIVES: Chronic intestinal failure (CIF) is a rare and complex disease, requiring home parenteral nutrition (HPN) to sustain growth and development. The impact on parents taking care for children with HPN remains underexplored. This qualitative study aimed to elucidate the experiences and challenges faced by parents in caring for HPN-dependent children. METHODS: Parents of children aged 0-18 years, diagnosed with CIF receiving HPN in the Emma Children's Hospital-Amsterdam UMC, were eligible. One-to-one semistructured interviews were conducted with parents at their home with open-ended questions regarding experiences around diagnosis, experiences with healthcare (both home care and at the hospital), mental health, holidays, social functioning and leisure time, work, relationship with the partner and family, fear for the future, and overall impact. RESULTS: Parents of 24 children were invited. Thirteen parents (four fathers and nine mothers) of 10 children (four females, median age 9 years) with HPN agreed to participate and were interviewed. Most important recurring themes among all parents, emerging from open-ended questions, were as follows: control in caregiving and reluctance to trust others to provide care over their child, social isolation due to limited time and flexibility, and importance of maintaining their own identity by self-fulfillment activities such as work, and physical or social activities. CONCLUSIONS: This qualitative study underlines the profound impact of managing a child with HPN on daily life, relationships and well-being. There is need for tailored support and interventions to help families face the burden of having a child with HPN.