Caregivers of Children With Medical Complexity: A Qualitative Study of Their Adaptation

Caregivers of children with medical complexity (CMC) modify their lives extensively to care for their children who have chronic conditions and often use medical devices. This study aimed to identify processes through which CMC caregivers adapt to meeting their child's needs and their own.

We conducted semistructured interviews with a group of CMC caregivers at a children's hospital in the Northeastern United States. We virtually interviewed caregivers to identify processes that enhanced their adaptation and coping. Interviews were recorded and transcribed. Following a grounded theory approach, we assigned process, emotion, and in vivo codes using MAXQDA qualitative data analysis software. We identified themes by conducting iterative group discussion. We processed themes through triangulation with our family advisory council. After reaching thematic saturation, we finalized themes through consensus with our study team, including a family partner.

We interviewed 14 caregivers (11 mothers, 3 fathers) from June to August 2021. Participants' children all had developmental delays and used medical devices (eg, feeding tube or tracheostomy). We identified 3 themes describing processes that helped these CMC caregivers adapt: (1) Finding acceptance and meaning in the caregiving experience; (2) organizing a practical system to care for their child; and (3) developing strategies to cope with stress.

This study identified emotional, practical, and social processes that helped our group of CMC caregivers adapt to caregiving. Our findings indicate that interventions likely to enhance caregiver adaptation could involve supporting caregivers to find acceptance and meaning, create caregiving systems, and develop coping strategies.