Children with medical complexities (CMC) are a population of children who have one or more chronic health conditions and require high utilization of healthcare (estimated 86% of charges in US children’s hospitals; Berry et al., 2013). Recent advancements in medical technology have increased survival rates for CMC, propelling the emergence of the field of complex care. Study 1 in this dissertation investigates caregivers’ experiences with their CMC in medical, home, and community settings within a psychosocial care lens. Study 1 utilized an explanatory sequential mixed method design via surveys (n = 149) and follow-up in-depth interviews (n = 26). Descriptive and inferential quantitative analysis strategies as well as qualitative thematic and content analysis techniques were used to analyze the survey and interview data. Findings from Study 1 included insights into the frequent need to access medical care/specialists; the demand and emotional process of caring for CMC; the risk of pediatric medical trauma and stress; the unique impact of COVID-19 on this population; challenges navigating medical insurance; the impact of the medical provider and system qualities on overall experiences; caregiver coping and advocacy; and suggestions for improving care for CMC. A major theme that emerged from Study 1 regarded how caregivers often felt dismissed, undervalued, or unsupported by medical practitioners and the medical system in general. This theme catalyzed the need for a follow up study investigating the training experiences of medical practitioners. Thus, Study 2 explored the training experiences of pediatric residents in Michigan in regard to working with children with disabilities and medical complexities, their perception of the disability culture at their institutions, and elicited training suggestions. Study 2 also utilized an explanatory sequential mixed method design with surveys (n = 58) and follow up interviews (n = 12). Data analysis mirrored that of Study 1, utilizing descriptive and inferential quantitative analysis strategies in addition to qualitative thematic and content analysis techniques. Findings revealed important insights into the variable nature of medical training on disability and complexity; variations in the disability culture at institutions across Michigan; challenges navigating a fragmented healthcare system; a desire for additional training on disability and complexity; and recognizing the expertise of caregivers of CMC. These two studies together provide a comprehensive view of the healthcare experiences of CMC, their caregivers, and the medical practitioners supporting them, as well as the systemic barriers that inhibit the care of CMC. Several meta-inferences emerged during triangulation of Studies 1 and 2, revealing shared challenges and experiences between caregivers and pediatric residents navigating supporting CMC. These studies emphasize the need to invest in research, practices, and policies that more holistically support children with medical complexities, their caregivers, and the medical practitioners supporting them.
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