“I Keep Going Till I Get What She Needs:” A Mixed-Methods Study Investigating the Educational Experiences of Caregivers of Children with Medical Complexities

Abstract

Children with medical complexities (CMC) constitute a distinct population who experience chronic health conditions and require significant health care utilization. Despite modern advancements in medical technology enhancing their survival rates, CMC and their families encounter substantial hurdles in accessing appropriate health care and educational services. This study investigated CMC and caregiver experiences in educational settings and the impact of the COVID-19 pandemic on this population. We used an explanatory sequential mixed method investigation, consisting of online surveys (n = 149) and semi-structured interviews (n = 26). Descriptive and inferential analytic analyses were conducted for the quantitative data, while we utilized thematic and content analysis techniques for the qualitative data. Findings underscore the significance of caregiver advocacy and the need for collaborative care coordination to support students’ educational needs. Our study sheds light on the multifaceted nature of education for CMC, emphasizing the crucial role of caregivers in advocating for inclusive education and collaborative partnerships between educational and medical systems. Insights gleaned from caregiver suggestions offer pathways for enhancing educational outcomes and improving the integration of health care into educational settings. This research contributes to ongoing efforts to address the unique needs of CMC and improve educational equity for this vulnerable population.

Keywords

parent–teacher collaboration and teamwork specialized health care needs health care inclusive education family involvement

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