The Experience of Parental Caregiving for Children With Medical Complexity

The Experience of Parental Caregiving for Children With Medical Complexity

Teicher J; Moore C; Esser K; Weiser N; Arje D; Cohen E; Orkin J

Clinical Pediatrics

2023

Parents/psychology; Quality of Life; caregivers; Caregivers/psychology; Child; children with medical complexity; Chronic Disease; Humans; Mental Health; parenting; qualitative research; Qualitative Research; quality of life

Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others' support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population.

2024 SE2 - Parent Perspectives