Growing Up Through a Pandemic: A Mixed-Methods Study of How the COVID-19 Pandemic Shaped the Transition to Adulthood for Youth With Special Healthcare Needs and Their Families

Abstract

Background: The COVID-19 pandemic profoundly altered daily life and interrupted key milestones during the transition to adulthood for youth with special healthcare needs (YSHCN). In this patient-oriented study, we investigated the impact of the COVID-19 pandemic on Canadian YSHCN during their transition to adulthood. Methods: We used a sequential, exploratory mixed methods design. In Phase 1 (Interpretive Description), we conducted semi-structured interviews with 21 YSHCN or their caregiver proxies. Rapid qualitative analysis identified key themes that informed Phase 2, a cross-sectional online survey completed by 516 YSHCN or their proxies. Survey results were summarized using descriptive statistics, and heterogeneity in experiences was examined using chi-square and multivariable logistic regression analyses. Mixed methods findings were integrated using joint displays. Results: YSHCN described positive and negative experiences across the domains of healthcare, autonomy, relationships, vocation and lifestyle. Virtual modalities enhanced accessibility for some but deepened exclusion for others, particularly youth requiring hands-on or specialized support. Participants described strengthened family connections and accelerated pathways to autonomy as positive experiences, whereas disrupted access to healthcare, delayed milestones and increased social isolation were common negative experiences. In the survey, family support and positive coping strategies emerged as protective influences, whereas lack of in-person services, distressing news and social distancing were identified as key negative factors. Youth with mental or developmental healthcare needs were more likely to experience positive impacts of virtual services, whereas younger youth and those with mental healthcare needs were more likely to be negatively impacted by the lack of in-person services. Conclusions: The pandemic had mixed impacts on YSHCN, highlighting the need for flexible health, education and community services that accommodate diverse needs. Findings underscore the importance of building inclusive, resilient systems and policies that preserve accessibility gains and meaningfully engage youth and caregivers in post-pandemic recovery and future crisis planning.