P478: The relationship between care recipient social behaviors and caregiver feelings of guilt in a rare disease context
Abstract
Children with rare genetic disease face a variety of medical complexities that require support of informal caregivers. Children with these conditions may experience behavioral issues and developmental delays that require external assistance and support from an informal caregiver. Rare disease caregivers report high caregiver burden and lower quality of life, including high levels of depressive symptoms. Guilt is known to be associated with depression, but existing research in this population has focused primarily on transmission guilt of parental caregivers specifically.
Fields of Study & Subjects
Family and Disability Support Research
Nursing care and research
Family Caregiving in Mental Illness
Publication details
- Journal / source
- Genetics in Medicine Open
- Volume
- 4
- Pages
- 103970–103970
- Publication date
- 1 January 2026
- Language
- EN