A Qualitative Study of CMC Caregivers' Perspectives about their Emotional Well-Being

To better understand the perspectives of family caregivers' of children with medical complexity (CMC) about their emotional well-being.

We conducted a qualitative study of family caregivers of CMC receiving medical care at an academic children's hospital in western Pennsylvania. Participants completed one-on-one, in-depth, semi-structured interviews examining their perspectives about their emotional well-being in the context of CMC caregiving. We used a constant-comparative and inductive approach to analyze deidentified transcripts and identify emergent themes.

We interviewed 19 participants (17 [90%] female; 14 [74%] White; mean age 43 years) from March to December 2022. Participant's children were 11 years old on average (range 2-20 years), utilized medical technology (19 [100%]), and lived with chronic conditions most commonly affecting the neurologic (19 [100%]), gastrointestinal (19 [100%]), and respiratory (16 [84%]) organ systems. Three emergent themes reflected how CMC caregivers' emotional well-being exists on a dynamic spectrum: 1) deep reward vs. sadness, 2) increased and decreased control of one's emotions, and 3) psychological strength vs. exhaustion and defeat. Participants reported experiencing these seemingly conflicting emotions either concurrently or oscillating between them.

Family caregivers of CMC report both strongly positive and negative changes to their emotional well-being which are often dynamic and in tension. Our findings can be used to inform the development and implementation of future clinical and research efforts aiming to improve the emotional well-being of this critically important caregiver population.