A unique and understudied pediatric population, children with medical complexities (CMC) comprise <1 % of all children in the United States of America (US), but account for 56 % of hospitalized child patients, 82 % of child hospital days, and 86 % of hospital charges in children's hospitals (Berry et al., 2013). This population is defined as children who: (a) are diagnosed with at least one chronic condition, (b) have substantial service needs, (c) have functional limitations that often result in technology dependence, and (d) utilize healthcare resources at a high rate (Cohen et al., 2011; Kuo et al., 2016). Developmental differences often experienced by CMC, along with their high utilization rates of medical care, result in unique challenges for these children and their caregivers.

Caregivers of CMC face significant challenges navigating life with their children. One commonly cited challenge relates to finances. Many caregivers reduce their working hours or stop working entirely to provide round-the-clock in-home care for their children (Foster, Shaunfield, Black, Labellarte, and Davis, 2022). This combined with the significant cost of medical care in the United States leads to high financial distress and burden (Allshouse, Comeau, Rodgers, and Wells, 2018; Baddour et al., 2021). Given this additional stress and the high levels of care CMC require, caregivers report poorer mental health and health-related quality of life than caregivers of children without medical complexities (Bayer et al., 2021; Yu, Henderson, Cook, and Ray, 2020). Advancements in medical technologies have extended the lifespans of CMC but have also presented new challenges. The transition from pediatric to adult care can be challenging as most adult healthcare systems are ill-equipped for this population. Caregivers transitioning their children from pediatric to adult care have noted a significant lack of support as well as significant disruption in care for their child during the transition (MacNeill, Doucet, and Luke, 2022).

CMC interact with medical systems frequently, increasing their risk for pediatric medical traumatic stress (PMTS), which is defined as the “psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences” (National Child Traumatic Stress Network, n.d.). The impact of continued medical care on caregivers and their children can be significant, especially when social and mental health support is lacking (Dewan et al., 2023). Research also shows that caregivers of CMC take on a variety of multifaceted roles to support CMC including care coordinator, advocate, healthcare provider, and teacher (Woodgate, Edwards, Ripat, Borton, and Rempel, 2015). This can contribute to role conflict, strain, and overload for caregivers, which can be taxing on the whole family system (Koch, Kozhumam, Seeler, Docherty, and Brandon, 2021). At times these roles can be overwhelming and negatively impact caregiver well-being and functioning (Page, Hinton, Harrop, and Vincent, 2020).

Given this population's high healthcare utilization and the limited mixed-methods research related to the experiences of, and challenges faced by CMC and their caregivers, we conducted a mixed-method study to address the following multifaceted research aims. Quantitative aims included: (a) to assess whether there is a significant difference in the ability to cope before and after the onset of the COVID-19 pandemic for caregivers of CMC, (b) to examine the extent to which insurance type predicts insurance satisfaction and stress for caregivers of CMC, and (c) to explore the relation between reduced working hours and perceived financial impact. Qualitative aims included: (a) to identify the experiences of and challenges faced by caregivers in providing home care for their CMC, and (b) to identify the experiences of and challenges faced by caregivers of CMC in medical and community settings. Mixed methods aims included: (a) to explore the impact of the COVID-19 pandemic on CMC and their caregivers, and (b) to identify suggestions caregivers have to improve medical care for CMC.

Informed by these specific aims as well as Bowen (1966) and the tenants of Patient and Family Centered Care (PFCC; Johnson and Abraham, 2012), the overarching goal of this study was to understand the experiences and challenges faced by CMC and their caregivers, explore the impact of the COVID-19 pandemic on these families, and highlight the suggestions caregivers have to improve medical care for their children.