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Research Project: Preventing the Development of Childhood Obesity

Location: Children's Nutrition Research Center

Title: Characterizing experiences of caregiver support among parents of children and adolescents with type 1 diabetes: A qualitative study

Author
item ESHTEHARDI, SAHAR - Baylor College Of Medicine
item BAUDINO, MARISSA - Baylor College 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: Journal of Pediatric Psychology
Publication Type: Abstract Only
Publication Acceptance Date: 11/29/2023
Publication Date: 4/1/2024
Citation: Eshtehardi, S.S., Baudino, M.N., Anderson, B.J., Thompson, D.J., Marrero, D.G., Hilliard, M.E. 2024. Characterizing experiences of caregiver support among parents of children and adolescents with type 1 diabetes: A qualitative study. Journal of Pediatric Psychology. 49(Suppl_1):62-63. https://doi.org/10.1093/jpepsy/jsae010.
DOI: https://doi.org/10.1093/jpepsy/jsae010

Interpretive Summary:

Technical Abstract: Caring for a child with type 1 diabetes (T1D) can be relentless and taxing. Diabetes distress is common among parents with implications for parent and child well-being. Emotional support may help parents of youth with T1D manage disease-specific distress. Little is known, however, about parents' lived experiences with emotional support in relation to caring for a child with diabetes. This research characterized how parents of youth with T1D experience and perceive emotional support. As part of a larger qualitative study on diabetes health-related quality of life, 23 parents (96% mothers) of T1D youth aged 5-17 years (M=10.9+/-3.8 years; 35% female; 40% non-Hispanic White, 30% non-Hispanic Black, 30% Hispanic; 40% publicly insured) completed semi-structured interviews about their experiences with various domains of health-related quality of life, including emotional support. Interviews were transcribed verbatim, coded using NVivo software, and interpreted using thematic analysis to generate major and minor themes. Using the social-ecological model as a guiding framework, three themes were constructed, each with three subthemes. The "Individual" theme included parent-specific factors, including their openness to receiving diabetes-related emotional support and their satisfaction with the support they receive from others. The "Inter-personal" theme included central networks (e.g., family, healthcare professionals, school personnel) who provide support or from whom parents want to receive support. The "Community" theme included parents' extended support networks (e.g., community members, T1D organizations, other families). Individual and environmental considerations impact how parents of youth with T1D seek and receive emotional support. All three themes revealed that parents valued emotional support that was non-judgmental, validating, and demonstrated accurate knowledge of T1D management. These observations suggest that it may be helpful to ask parents about diabetes emotional support they receive or want, and suggest resources across these three contexts - individual, interpersonal, and community.