"Rolling the Boulder Up the Hill": A Qualitative Study of Parents' Experiences Providing Ongoing Care at Home for Their Child with Complex Medical Needs.

ABSTRACT: Background & PurposeParents of children with medical complexity (CMC) provide continuous, intensive care that encompasses a range of technical tasks, emotional support, advocacy, and coordination within fragmented healthcare systems. Existing research often treats caregiving as a discrete phenomenon, overlooking how parents make meaning of their roles amid uncertainty and moral distress. This study aimed to explore the lived experiences of parents caring for children with medical complexity at home, examining how caregiving is experienced, sustained, and made meaningful in everyday life.Methods & ProceduresAn exploratory qualitative design was used to conduct in-depth, semi-structured interviews with 15 parents (13 mothers, two fathers) of CMC receiving home care in Ontario, Canada. Purpos

SUBMITTER: Tay J 

PROVIDER: S-EPMC12789259 | biostudies-literature | 2026 Mar

REPOSITORIES: biostudies-literature