Parental perspectives on family-centered care in pediatric neurology: An explanatory sequential mixed-methods study.
Ege Sarikaya, Courtney B Cook, Kathryn A Selby and 2 others
PMID 40170197WHAT IT FOUND
Parents of children with neurological conditions rated respectful care highly but general information poorly.
They felt responsible for coordinating care across therapists and schools, often seeking answers online due to gaps. Quality of life scores were lower for older children and families facing access barriers.
Key findings
01Parents rated 'respectful and supportive care' highest and 'providing general information' lowest among family-centered care domains.
02There were no significant associations between parents' perceptions of family-centered care and the child's health-related quality of life scores.
03Parents described acting as the communication liaison between healthcare providers, schools, and community services, often feeling burdened by this coordination role.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The study relied on parent proxy-reports for child quality of life, which may not fully reflect the child's own experience. The sample was predominantly female parents and English-speaking, limiting generalizability to fathers and non-English-speaking families. The qualitative phase included only 10 interviews, which may not capture the full diversity of parental experiences. The cross-sectional design cannot establish causality between family-centered care perceptions and quality of life outcomes.
Declared interests
The authors declared no conflicts of interest. The study was funded by grants from the National Society of Genetic Counselors, BC Children's Hospital Research Foundation, Genome Canada, and the Canadian Institutes for Health Research.
The easy way to misread this
Do not assume that improving family-centered care scores will directly improve a child's quality of life. This study found no significant association between the two measures, suggesting that parents' satisfaction with care processes and their child's health outcomes are distinct issues.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →