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Title: Pediatric type 1 diabetes and family quality of life: The role of siblings

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

Submitted to: Meeting Abstract
Publication Type: Abstract Only
Publication Acceptance Date: 11/16/2018
Publication Date: 4/5/2019
Citation: Cao, V.T., Eshtehardi, S.S., McKinney, B.M., Anderson, B.J., Thompson, D.J., Marrero, D.G., Hilliard, M.E. 2019. Pediatric type 1 diabetes and family quality of life: The role of siblings [abstract]. Society of Pediatric Psychology Annual Conference (SPPAC). April 4-6, 2019; New Orleans, LA. Poster Session 3, Poster 10.

Interpretive Summary:

Technical Abstract: Having a child with type 1 diabetes (T1D) impacts the entire family system, yet little has been researched regarding the quality of life of family members. Parental distress and burden have been well-studied, but other family members including siblings have not received much attention. The experiences of siblings have been studied in other pediatric chronic conditions (e.g., autism, cancer), focusing on parental capacity to tend to their other children, psychological adjustment of siblings, and interventions targeted at the psychological well-being of the sibling. Despite the pervasive nature of T1D and its management in family life (e.g., meals, family activities, overnight), little is known about siblings of youth with T1D and their role in family quality of life. Similar to other conditions, we expected that parents would report difficulty attending to the needs of siblings and emotional distress related to T1D (e.g., worry, resentment) in siblings. Based on clinical anecdotes, we also expected siblings to participate in T1D management. As part of a larger qualitative study of diabetes-specific health-related quality of life, parents of youth with T1D age 5-17 (M=10.8+/-3.6 years, 35% female) participated in semi-structured interviews about T1D management and family quality of life. Interviews were audio-recorded, transcribed, and coded using content analysis to derive central themes. Data from 20 parents (95% mothers) from households with at least one sibling were analyzed for this study. When asked about family management of T1D, parents' responses reflected three common themes related to siblings: (1) Siblings share the diabetes workload and help with T1D management tasks. Parents described siblings' roles in T1D management such as noticing low and high blood glucoses and helping administer insulin (2) T1D takes an emotional toll on siblings. Parents noticed their children without T1D experienced worry about their sibling with T1D and felt sad about diabetes. (3) Parents feel guilty about siblings having to compromise or forgo activities and sibling needs being neglected. Parents identified siblings as significant contributors to family management of T1D and recognized the impact that T1D has on siblings, which at times can result in parental feelings of guilt. These findings can help inform future research into sibling experiences, which may help pediatric psychologists and diabetes care teams offer sibling-inclusive resources for families with T1D. Enhancing family-focused interventions to more effectively recognize and support the needs of siblings may ultimately improve family diabetes-related quality of life.