"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. Purposive sampling was used to recruit parents. Data were analyzed using Braun and Clarke's thematic analysis approach.ResultsTwo overarching themes emerged from parents' accounts: (1) The Layered and Relentless Nature of Caregiving; and (2) The Transformation of Self Through Caregiving, with effects spanning social life, identity loss, mental and physical health decline, and financial strain. Parents reported role overload, identity loss, chronic fatigue, emotional isolation, and ongoing pressure to advocate within unresponsive systems. The lack of consistent and reliable home care and financial support intensified challenges.ConclusionCaring for a CMC impacts parental well-being and reshapes their identity. Sustainable caregiving requires policies and services that support more than just childcare. Integrated mental health services, equitable access to respite, income protections, and caregiver-informed systems are needed to relieve families of unsupported responsibilities and ensure the long-term sustainability of home-based complex care.