P0068 - Caregiving Across Contexts: Siblings of Children With Inherited Metabolic Disorders and Siblings of Typically Developing Children

Background: Siblings of children with chronic diseases may ultimately become their sibling’s primary caregivers, yet research on their caregiving contributions during childhood is limited. Studies on sibling caregiving have largely focused on the roles and needs of adults caring for their siblings. Moreover, research on siblings of children with chronic illnesses or disabilities primarily examines their experiences and psychosocial outcomes. No known research explores the caregiving contributions of siblings of pediatric patients, or how these contributions vary by age. In addition, there are no known studies on the caregiving roles of siblings of children with inherited metabolic disorders.


Methods: Here, we aim to identify associations between the caregiving roles and age of siblings of children with inborn errors of metabolism (IEM) and siblings of typically developing (TD) children, and evaluate whether these associations differ based on disease context. Our data were collected through semi-structured interviews conducted with 50 parents of children with IEM and 30 parents of exclusively TD children. The caregiving and support roles of 55 siblings (age range 1-24 years, mean 9.3 years) of children with IEM and 42 siblings (age range 1-31 years, mean 11.0 years) of TD children were described by participating parents. Semi-structured interviews were transcribed and coded to assess each sibling’s support and direct care contributions.


Results: Loglinear models were fitted to test associations between caregiving role, age, and context (IEM, TD). There was a significant association between ratings of satisfaction with the siblings’ support to the parent and disease context (χ² (1) = 4.09, p < .05). Parents were more likely to report dissatisfaction with received support if they had a child with IEM than those with TD children. Moreover, parents were less satisfied with older (age 9 years and older) siblings’ involvement in direct care, as compared to younger (ages 0-8 years) siblings (χ² (1) = 4.61, p < .05).

Conclusions: These results suggest that siblings of children with IEM may face higher parental expectations than siblings of TD children, and that the perceived quality of direct care contributions may diminish as siblings age, independent of disease context. Further assessment of the specific caregiving and support contributions of siblings during childhood can inform interventions to motivate and prepare siblings for lifelong caregiving roles.