Parent-Reported Caregiving Roles of Siblings of Children with Inborn Errors of Metabolism

Abstract

Objectives: Research examining sibling caregiving contributions to medically complex pediatric patients, including those with inborn errors of metabolism (IEMs), is limited. We assess caregiving roles and attributes of siblings and hypothesize that there will be differences in parent-reported contributions among siblings of children with IEMs and siblings of typically developing (TD) children.

Study design: A convergent parallel mixed-methods study design guided analysis of data from parental surveys and semistructured interviews. Interviews were conducted with parents (n = 49) of children with IEMs and parents (n = 28) of exclusively TD children. We used inductive thematic analysis to identify themes related to sibling caregiving. The caregiving and support roles for siblings (n = 55) of children with IEMs and siblings (n = 42) of TD children were coded to assess each sibling's caregiving contributions and personal attributes.

Results: Logistic regressions, using generalized estimating equations, were fitted. Results showed that siblings of children with IEMs were significantly more likely to provide monitoring (odds ratio [OR]: 3.62, confidence interval [CI]: 1.30-10.07) and emotional/social support (OR: 4.02, CI: 1.67-9.67) than siblings of TD children. Themes arising from interviews with parents of children with IEMs focused on sibling attributes, parental expectations regarding sibling caregiving, and challenges to the sibling-sibling and parent-sibling relationships. Themes revealed nuances in the sibling caregiving experience.

Conclusion: Siblings of children with IEMs make meaningful caregiving contributions and may provide care differently than siblings of TD children. Understanding childhood caregiving roles may inform how health care providers and parents encourage sibling caregiving contributions into adulthood.