Strengths, Challenges, and Time Constraints: A Phenomenology of Youth Caregiving in Philadelphia

• In Event: Supporting Children, Youth, and Families: The Social Safety Net and Student Experiences

Abstract

Introduction: Approximately 38 million United States (US) family caregivers provide the equivalent of $600 billion in unpaid healthcare labor annually, including emotional support, assistance with activities of daily living (ADLs), medication administration, wound care, bill management, transportation, and coordination of appointments and hospital admissions and discharges (Reinhard et al., 2023). Given these demands, caregivers frequently experience chronic stress, psychological distress, poor physical health, financial distress, job instability, and social isolation (Ringer et al., 2017; Raina et al., 2004). Conservative estimates place the prevalence of caregiving adolescents in the United States aged 15-18 at approximately 10% (Miller et al., 2024; Hendricks et al., 2021). Families relying on adolescent caregivers are disproportionately likely to experience socioeconomic disadvantages and limited access to care (Kavanaugh et al., 2016), but support for this population is limited by a lack of knowledge of adolescent caregivers’ experiences and the academic, emotional, and social impacts of their caregiving (D’Amen et al., 2021). The invisibility of youth caregiving stymies the ability of state and federal policymakers to respond effectively, compounding the challenges these adolescents face.

Purpose: Our objective is to mitigate the negative impacts of health needs on families and children through improved support for caregiving adolescents. To address existing evidence gaps, we aimed to understand adolescents’ caregiving tasks, existing support systems, and unmet needs to provide foundational knowledge from which to design supportive interventions.  

Data: Twenty-five adolescents (N= 25, median age 16 years; 68% female; 68% Black/African American) from Philadelphia participated in interviews with our team.

Research Design & Methods: We conducted a phenomenological qualitative study using semi-structured interviews with adolescent caregivers in Philadelphia. Most participants were recruited through chronically ill relatives at Penn Medicine clinics, and a smaller subset was recruited through a Philadelphia charter school network. One participant was recruited through snowball sampling. Interviews were conducted over the phone, audio-recorded, transcribed, deidentified, and analyzed using a constructivist thematic approach with iterative, team-based analysis. 

Results: Participants reported providing care including medication management, physical assistance, appointment coordination, emotional support, sandwich caregiving (i.e., care also for a younger family member), and family financial contributions. Caregiving strengthened family relationships and fostered pride and maturity while also producing stress, grief, and social isolation. Many participants described difficulties balancing caregiving with academic performance. While some adolescents received support from specific educators, many were reluctant to disclose their caregiving responsibilities to their schools. Adolescents’ experiences varied by illness acuity, household composition, cultural and linguistic identities, and access to school, family, and community support.

Conclusion: This study highlights the unique family roles assumed by adolescents providing care to family members with illness. Adolescents’ caregiving roles may influence their academic and social well-being and physical and mental health, supporting the need for developmentally and contextually tailored policies and interventions at the site, state, and federal level.

Authors

• Katherine Braham Pedersen, University of Pennsylvania
  Presenting Author

• Sarah Mitchell, University of Pennsylvania
  Non-Presenting Co-Author

• Daniel Carter, University of Pennsylvania
  Non-Presenting Co-Author

• Eric Underwood, University of Pennsylvania
  Non-Presenting Co-Author

• Omar Elsakhawy, University of Pennsylvania
  Non-Presenting Co-Author

• Ericka S. Weathers, Stanford University
  Non-Presenting Co-Author

• Joanna Hart, University of Pennsylvania
  Non-Presenting Co-Author