"Fitting the Pieces Together": The Experiences of Caregivers of Children With Medical Complexity.

BACKGROUND AND OBJECTIVES: Families of children with medical complexity manage a multitude of care responsibilities that must be carefully coordinated alongside typical family roles and activities. Currently, little is known about this experience from the perspectives of caregivers; therefore, the purpose of this study was to explore the experience of caregiving for a child with medical complexity while identifying unmet medical and psychosocial needs.

METHODS: Nineteen caregivers were recruited from the pediatric complex care clinic at an academic medical center in the United States. Each participant completed an in-depth, narrative interview that was audio-recorded and transcribed; transcripts were analyzed using an inductive coding approach.

RESULTS: Participants described their caregiving experiences along 4 themes: (1) the many responsibilities of caregiving, (2) insufficient respite care and skilled support, (3) financial limitations and costs of care, and (4) challenges with mental health and wellbeing. Participants identified unmet needs in 6 dimensions: (1) transition stress, (2) communication across teams, (3) learning to be an advocate, (4) purposefully inclusive environments, (5) finding connections and community, and (6) the challenges of coronavirus disease 2019.

CONCLUSIONS: Caregivers of children with medical complexity identify a host of experiences and unmet needs that challenge the physical, emotional, and psychosocial wellbeing of themselves and their families. With more attention to the holistic experience of caregiving for this population, providers and teams can better anticipate needs and provide services and programs that enhance caregiver and family wellbeing simultaneously.