Investigating Parental Health-Related Quality of Life in Pediatric Type 1 Diabetes: A Social Determinants Framework

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Background: Caring for a child with type 1 diabetes (T1D) is complex and taxing. For parents of youth with T1D, health-related quality of life (HRQOL) is an important construct to consider, representing the impact of their child’s medical condition on their own physical, emotional, mental, and social functioning. Supporting parents’ HRQOL is critical as poor parental well-being is consistently linked to poorer youth behavioral and glycemic outcomes. Social determinants of health (SDOH) – or non-medical factors closely related to health – play a vital role in an individual’s perceived HRQOL. SDOH are organized into five key domains: (1) economic stability, (2) education, (3) health and health care, (4) neighborhood and built environment, and (5) social and community context. To date, limited literature has examined how SDOH relate to experiences of parenting a child with T1D. Understanding the potential social determinants of HRQOL in parents is needed to assess the appropriateness of current supportive interventions, support the development of future interventions, and ultimately improve youth diabetes outcomes. Purpose: The three-part dissertation aimed to investigate the associations of SDOH with parental HRQOL by: (1) exploring diabetes-specific financial experiences in parents; (2) assessing potential sociodemographic differences in parents’ HRQOL; and (3) characterizing parents’ experiences with and perceptions of diabetes-specific social support. Together, these studies explored three domains of SDOH: economic stability (studies 1 & 2), health/health care (studies 1, 2, & 3), and social and community context (study 3). Methods & Results: All studies were secondary analyses of data from a larger mixed-methods study about HRQOL in people with T1D and their families. Study 1, which was previously published (Eshtehardi et al., 2020), used qualitative methods to explore perspectives on diabetes-related expenses in parents of youth with T1D (n=23). Following the principles of hybrid thematic analysis, two primary themes were generated: “Sacrifices & Hardships” and “Gratitude.” Study 2 used quantitative methods to evaluate whether there are differences in HRQOL in parents of youth with T1D (N=369, Mage=43.3±8.7, 80% female) across demographic, medical, and socioeconomic groups. Multivariate regression analyses revealed that a model inclusive of demographic (youth age), medical (HbA1c, diabetes duration, continuous glucose monitoring (CGM) use, insulin regimen), and SDOH (race/ethnicity, marital status, youth health insurance) variables significantly predicted parental HRQOL, though CGM use and HbA1c were the only variables independently associated with HRQOL in the final model. Study 3 characterized how parents (n=23) feel about and seek emotional support related to their role as a parent of someone with T1D using qualitative research methods. Data generated three major themes and nine subthemes, suggesting parents receive emotional support of different types and from various sources based on preferences at the individual, interpersonal, and community levels. Discussion: Findings suggest individual needs, experiences, and SDOH relate to parental HRQOL. Considering the intersectionality of SDOH, medical outcomes, and HRQOL, clinical approaches should emphasize universal parental HRQOL screening and tailored interdisciplinary interventional approaches. Future research is needed to advance opportunities for HRQOL equity in parents, including collecting qualitative and quantitative data on housing, environmental safety, transportation, and socioeconomic status across a larger time frame.

pediatric, type 1 diabetes, health-related quality of life, parents, social determinants
Portions of this document appear in: Eshtehardi, Sahar S., Barbara J. Anderson, Viena T. Cao, Brett M. McKinney, Deborah I. Thompson, David G. Marrero, and Marisa E. Hilliard. "On the money: Parental perspectives about finances and type 1 diabetes in youth." Clinical Practice in Pediatric Psychology 9, no. 4 (2021): 340.