Peer-reviewed article
Home-Based Parenting Strategies and Challenges of Primary Parental Caregivers of Children With Medical Complexity in Japan: A Qualitative Study.
Yamaguchi M, Suzuki Y ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study examined how parents in Japan care for children with medical complexity and what challenges they face. Researchers interviewed 13 primary caregivers (mostly mothers) of children with ongoing medical needs to understand their strategies and support needs. Parents were able to use Japan's support policies effectively, but the study found gaps in paediatric nursing services, coordination between sectors, transition support as children become adults, and respite care. The research identifies priority areas for healthcare professionals to improve support for these families.
Key points
- Caregiving was predominantly mother-centred, with 11 of 13 primary caregivers being mothers
- Parents effectively used supportive policies including home-visit physician and nursing services, respite care, and after-school services
- Insufficient paediatric-trained home-visit nursing services were identified as a major challenge
- Weak support for interagency coordination and transition-to-adult care were priority gaps
- Practical strategies for disaster preparedness were identified as important in Japan's unique context
Limitations
This is a small qualitative study with 13 participants, all from Japan, so findings may not generalise to other countries or larger populations. The study identifies challenges through interviews but does not test whether specific interventions improve outcomes.
Abstract
Background In Japan, the number of children with medical complexity (CMC) is increasing. In response, the Act on Support for Children Requiring Constant Medical Care and Their Families mandated prefectural support centre establishment and promoted coordination across health, welfare and education sectors. In addition to services comparable to those in the United States (e.g., public school options and respite care), Japan strengthened publicly funded home-visit physician, nursing, and personal helper and after-school services to support parents. However, it remains unclear how parents adapt to this evolving system. This study aimed to qualitatively examine the strategies and challenges of primary parental caregivers of CMC in Japan to generate insights that can support family-centred services and clinical care practice. Methods We conducted a qualitative study guided by the Consolidated Criteria for Reporting Qualitative Research and included 13 primary parental caregivers. The inclusion criterion was ≥ 1 year as the principal at-home caregiver of CMC (< 18 years). Results Interviews were transcribed verbatim and inductively coded by two experienced researchers to achieve thematic saturation. Caregivers were predominantly mothers (11 mothers [female] and 2 fathers [male]). The median [interquartile range] ages of the parents and children were 47.0 [35.0-50.0] and 10.0 [7.0-13.0] years, respectively. Eight themes were identified. The challenge subthemes highlighted insufficient paediatric-trained home-visit nursing services, weak support for interagency coordination and transition-to-adult care support and inadequate respite care as priority areas for healthcare professionals. Conclusions Parents effectively leveraged supportive policies; however, deficiencies remain in paediatric-trained home-visit nursing services, interagency coordination, transition-to-adult care support and respite care. These challenges mirror international reports indicating global and implementation-level gaps. Additionally, reflecting on the unique context of Japan, caregiving was predominantly mother-centred, and practical strategies for disaster preparedness were identified. Family-centred care should prioritize workforce expansion, stronger cross-sector coordination and practical respite solutions at the point of care.