Examining the Spillover Economic Impacts of Caregiving Among Families of Children With Medical Complexity to Inform Inclusive Economic Models: Qualitative Study

BackgroundChildren with medical complexity represent a heterogeneous group of children with multiple chronic health care conditions. Caregivers of children with medical complexity experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child’s life. The spillover, or indirect, economic impacts of caregiving are understudied in the context the family units of children with medical complexity. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease, because they lack direct caregiver voice and context of caregiving activities, and existing methods have been noted to be ableist. ObjectiveThis study aimed to explore the economic spillover impacts of caregiving among families of children with medical complexity using their own words and perspectives, with the intent of expanding caregiver-centered perspectives when developing economic models. MethodsThis study was a secondary analysis of a qualitative study that was conducted to examine family management practices among caregivers of children with medical complexity and their social networks. Caregivers of children with medical complexity were recruited through a pediatric complex care clinic at an academic medical center in the mid-Atlantic region, United States. This study used inductive qualitative descriptive methods and a template to define features of the person impacted and to define the economic construct as either a direct or indirect (spillover) cost. ResultsA total of 20 caregivers were included in this study. Perspectives from the caregivers of children with medical complexity revealed several key themes: (1) time lost from employment, impacting the primary caregivers; (2) physical and mental health impacts, impacting the child themselves, siblings, and the primary caregivers; (3) impacts to leisure activities and self-care, impacting the child themselves, siblings, and the primary caregivers; and (4) impacts to the social network or social capital. ConclusionsThe themes described can be operationalized into inclusive family-centered models that represent the impacts of caregiving in the context of the family units of children with medical complexity. The use of qualitative methods to expand our development of quantitative economic models can be adapted to other populations where caregivers are involved in care. Caregivers can and should have an active voice in preference-based assessments that are operationalized in economic contexts to make them more inclusive. International Registered Report Identifier (IRRID)RR2-10.2196/14810