Seeking tirelessly for better health and life conditions for the child with myelomeningocele.
Maria Aparecida Bonelli, Amanda Aparecida Borges, Renata Olzon Dionysio de Souza and 3 others
PMID 34037122WHAT IT FOUND
Families caring for children with myelomeningocele described a relentless drive for the child's future independence.
They faced shock, financial strain, and social isolation, but found strength in shared fathering, school adaptations, and faith. Nurses were largely absent from their care journey.
Key findings
01The central experience for families was a constant drive to secure the child's autonomy and future independence, moving beyond curative treatments to include physical activity and self-care training.
02Families reported significant barriers including financial cost, social isolation from friends, and school refusal, while finding support through shared fathering, extended family, and spirituality.
03Nurses were not evidenced in the families' care experience, despite the authors highlighting nursing's potential role in teaching procedures like catheterization and dressing changes.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study was conducted in a single municipality in inland São Paulo, which is not a reference center for myelomeningocele, potentially affecting the availability of specialized services. The sample was limited to thirteen families, and the study focused on a specific age group, which may not capture the full lifespan experience. Data collection and analysis were performed by a single author, which may introduce bias. Qualitative findings cannot be generalized to all families with myelomeningocele.
Declared interests
The authors declared no conflicts of interest. The study was approved by the Ethics and Research Committee with Human Beings.
The easy way to misread this
Do not interpret the absence of nurses in the families' narratives as a lack of need for nursing care. The authors argue that nursing's role in education and family-centered care is underutilized, not that it is irrelevant. Also, do not treat the themes of 'thriving' or 'independence' as outcomes of specific interventions tested in this study; they are subjective experiences reported by the families.