Letting go of control: A qualitative descriptive study exploring parents’ perspectives on their child’s transition from pediatric to adult care for inflammatory bowel disease

Abstract

Parents of young adults with chronic disease are important stakeholders in their child’s transition from pediatric to adult care. There remains a gap in characterizing the parent experience during transition. This study describes the experiences of 13 mothers of young adults with inflammatory bowel disease during their child’s transition. Most parents expressed fear and sadness about their child transitioning. Themes relating to involvement in their child’s adult care included: direct involvement (sub-themes: disease management; logistics of care); and indirect involvement. Reasons for involvement included themes of parent’s feelings and child’s circumstances. Themes of involvement were discussed in terms of previous research on parenting of children with chronic disease. We suggest that future efforts focus on improving empathy and understanding toward parents of transitioning children and providing resources on how they can best support their child during transition and transfer to adult care.