Home‐Based Parenting Strategies and Challenges of Primary Parental Caregivers of Children With Medical Complexity in Japan: A Qualitative Study
Miku Yamaguchi, Yuki SuzukiABSTRACT
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.