Study Shows Caregivers Willing to Discuss Social Determinants of Health in Pediatric Multidisciplinary Clinics

A qualitative study presented at the 44th National Society of Genetic Counseling (NSGC) Annual Conference, held November 6-10, in Seattle, Washington, revealed caregivers' willingness and perspectives behind discussing social determinants of health (SDoH) with pediatric multidisciplinary providers during their child’s appointment. Findings showed that while most caregivers were open to discussing various SDoH in person, the majority preferred disclosing this information through a twice-yearly survey.

The study enrolled parents or guardians aged18 years or older who had attended at least one of their child’s pediatric multidisciplinary clinic (MDC) visit with a genetics provider in the United States. Participants were recruited through flyers posted at Arkansas Children’s Hospital and Children’s of Mississippi and through social media. Caregiver interviews were conducted virtually and lasted an average of 82 minutes (range: 58 – 123 minutes). Researchers used reflexive thematic analysis to retrospectively identify the main themes that emerged from these conversations.

Led by Madison Elise Land, MS, CGC, a pediatric genetic counselor at Arkansas Children’s Hospital, the study found that all caregivers (n = 14) were most willing to discuss employment, transportation, social support system, and quality of healthcare. Furthermore, researchers analyzed the interview transcriptions and identified 3 main themes: the influence of medical diagnoses influence SDoH; vulnerability experienced when discussing SDoH; and context and communication as main themes.

Caregivers were least willing to discuss topics such as stress levels, income and unemployment, with at least 5 respondents indicating they were either unwilling, or their willingness depended on the situation. Additionally, findings indicate that the majority of the participants (n = 10; 71%) would prefer to answer these questions through an anonymous survey so they could spend more time discussing their child's medical condition during appointments. The study noted the respondents were not currently experiencing unmet SDoH, so the responses given were often about hypothetical situations.

For context, SDoH are the non-medical factors in someone’s life that influence health outcomes and can create health disparities when SDoH inhibit an individual’s ability to access the same level of care as others in a society.² It’s estimated that 68% of people in the United States have challenges in at least one SDoH risk categories.³ MDC offers a way to consolidate medical appointments by offering coordinated, comprehensive care to patients in one location.

Read More: Social Determinants of Health and Clinical Burden in Narcolepsy: A Retrospective Cohort Analysis

SDoH has also been evaluated by clinicians in a multi-part interview series on NeurologyLive®. In a previously conducted Roundtable Discussion, leading sleep medicine experts Eric Olson, MD, and Anita Shelgikar, MD—president-elect of the American Academy of Sleep Medicine—offered their perspectives on presentations from the 2025 SLEEP Annual Meeting in Seattle, Washington, including conversations around SDoH.

This portion of the interview centers on a large retrospective analysis from the All of Us Research Program evaluating the real-world social and medical burdens of narcolepsy. In this clip below, Olson and Shelgikar explore disparities in employment, access to care, and social well-being, highlighting how these factors intersect with clinical outcomes and comorbidities. Overall, the findings underscore the need for holistic patient care that accounts for quality of life, mental health, and socioeconomic barriers.

REFERENCE
1. Land M, Beaver E, Dean L, Lepard T. Discussing social determinants of health in pediatric multidisciplinary clinics: Caregiver’s perspectives. Presented at National Society of Genetic Counselors Annual Conference: November 6-10, 2025; Seattle, WA.
2. Singh, G. K., Daus, G. P., Allender M., et al. Social determinants of health in the United States: Addressing major health inequality trends for the nation, 1935-2016. International Journal of MCH and AIDS, 6(2), 139-164. https://doi.org/10.21106/ijma.236by
3. Bundy J. D., Mills K. T., He H., et al. Social determinants of health and premature death among adults in the USA from 1999 to 2018: A national cohort study. The Lancet. Public Health, 8(6), e422–e431. https://doi.org/10.1016/S2468-2667(23)00081