"We are a family with diabetes": Parent perspectives on siblings of youth with type 1 diabetes

Authors: CAO, VIENA - Baylor College Of Medicine; ANDERSON, BARBARA - Baylor College Of Medicine; ESHTEHARDI, SAHAR - University Of Houston; MCKINNEY, BRETT - Indiana University School Of Medicine; Thompson, Deborah; MARRERO, DAVID - University Of Arizona; HILLIARD, MARISA - Baylor College Of Medicine

Submitted to: Families, Systems, & Health
Publication Type: Peer Reviewed Journal
Publication Acceptance Date: 3/1/2021
Publication Date: 8/20/2021
Citation: Cao, V.T., Anderson, B.J., Eshtehardi, S.S., McKinney, B.M., Thompson, D.J., Marrero, D.G., Hilliard, M.E. 2021. "We are a family with diabetes": Parent perspectives on siblings of youth with type 1 diabetes. Families, Systems, & Health. 39(2):306–315. https://doi.org/10.1037/fsh0000612.
DOI: https://doi.org/10.1037/fsh0000612

Interpretive Summary: Having a child with type 1 diabetes (T1D) impacts the entire family system. Parental distress and burden have been well studied, but other family members, including siblings, have received little attention. This research revealed that siblings of children with T1D are impacted and have an important role in T1D management and family functioning. Enhancing family-focused interventions focused on T1D management should recognize and support the needs of siblings, which may ultimately improve family T1D-related quality of life.

Technical Abstract: Having a child with type 1 diabetes (T1D) impacts the entire family system. Parental distress and burden have been well studied, but other family members, including siblings, have received little attention. Based on research about family life and sibling experiences in other chronic condition populations (e.g., autism, cancer), we expected parents of youth with T1D would report that siblings participated in T1D management and that T1D had a psychological impact on siblings. As part of a larger qualitative study, parents of youth with T1D age 5-17 (M=10.8+/-3.6 years) participated in semi-structured interviews about T1D-specific health-related quality of life. For this study, we conducted secondary analyses on transcripts from 20 parents (95% mothers) from households with at least one sibling of the child with T1D. Three themes emerged: (a) siblings share the workload and help with T1D management, (b) T1D takes an emotional toll on siblings, and (c) parents feel guilty about prioritizing T1D over siblings' needs and desires. Parents recognized siblings have impactful roles in T1D management and family functioning. Future research into these themes can guide clinical and research efforts to develop sibling-inclusive resources and interventions for families with T1D. Enhancing family-focused interventions to recognize and support the needs of siblings may ultimately improve family T1D-related quality of life.