ArticleAcademic pediatrics
A Qualitative Study of Family Caregiver Perceptions of High-Quality Care at a Pediatric Complex Care Center.
Article in Academic pediatrics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 2 of them syntheses that pooled it.
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Who cites it
4 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Qualitative perceptions of child and youth mental health services by caregivers in the WHO European Region: a systematic review of qualitative literature.European journal of public health · 2026Pooled it
- Family Caregivers' Experiences of Services for Children With Medical Complexity: A Systematic Review and Qualitative Evidence Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Qualitative evaluation of a hospital-inpatient service for children with medical complexity.BMJ paediatrics open · 2025Article
- Qualitative feedback from caregivers in a multidisciplinary pediatric neuromuscular clinic.Journal of pediatric rehabilitation medicine · 2024Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
objectivePediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers' perceptions of what constitutes high-quality care at a complex care center.
methodsWe conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children's hospital. In-depth, semistructured interviews focused on caregivers' general experiences at the clinic, positive and negative experiences related to core components of the pediatric medical home, and recommendations for improvements. We thematically analyzed transcripts through a mixed inductive and deductive approach, using constant comparative methodology, with the pediatric medical home model as an organizing framework.
resultsWe conducted interviews with 20 participants (18 [90%] biological parents; 19 [95%] female; mean age 39 years) in outpatient settings. Caregivers described 2 major themes: 1) the value of having a clinician "quarterback" who is in-charge of their child's care and caregivers' go-to for questions and concerns, and 2) wanting clinicians who are personally invested in and willing to "go above and beyond" for their child. Participants discussed how and which components of the medical home model enable CMC clinicians to meet these needs.
conclusionsFamily caregivers of CMC want clinicians who take responsibility for managing their child's overall care and demonstrate personal commitment to ensuring their child's well-being. Multiple aspects of the medical home framework, rather than care coordination alone, help meet caregivers' perceptions of high-quality complex care.
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