"Rolling the Boulder Up the Hill": A Qualitative Study of Parents' Experiences Providing Ongoing Care at Home for Their Child with Complex Medical Needs.
Joanne Tay, Adam Rapoport, Jamie Crawley and 2 others
PMID 41100874WHAT IT FOUND
Parents caring for medically complex children at home described doing nursing tasks, advocacy, and round-the-clock care, often without enough support, with strain on sleep, identity, and finances.
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Key findings
01Parents described taking on nurse, therapist, coordinator, and medical decision-maker roles, including suctioning, medication, and vital sign monitoring, because home care was inconsistent.
02Parents described advocacy as necessary to secure services, and they often used peer networks to gather information and validate claims.
03Parents reported months or years without uninterrupted sleep and financial strain from reduced work or leaving employment.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study included 15 English-speaking parents, mostly mothers, and excluded families in active end-of-life care, so it may not represent fathers, kinship caregivers, families with language barriers, or families less connected to services. Data were collected once, so the accounts may reflect a particular moment of distress, adaptation, or resilience rather than a stable pattern. The researchers were nurse researchers and healthcare providers with insider knowledge of pediatric complex care, which may shape themes. The study describes experiences and does not test whether home care nursing, respite, mental health screening, or advocacy training improves outcomes. Participants had received or previously received home care services, so families with no formal support may not be represented.
The easy way to misread this
Do not read these themes as proof that home care nursing, respite, or caregiver mental health screening will reduce family strain. The study describes the experiences of 15 parents and does not test any intervention.