Home-Based Parenting Strategies and Challenges of Primary Parental Caregivers of Children With Medical Complexity in Japan: A Qualitative Study.
Despite access to public home-visit services, parents of medically complex children in Japan report poor interagency coordination, no real respite, and inadequate transition-to-adult support.
They cope by stacking every available service, spreading care across the family, and leaning on peer networks.
Key findings
1Several parents reported that discharge teaching was inadequate and that the scarcity of paediatric-trained home-visit nurses left them anxious about managing care at home.
2Despite Japan's 2021 CMC support law, core challenges — coordination gaps between agencies, limited respite, and inadequate transition-to-adult care support — persist in practice.
3Parents' main strategies were maximizing every available public service, distributing caregiving tasks across family members to protect the primary caregiver, and sharing practical information through peer networks.
Still to come
How it was doneWhat they found
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What it does not show
Single region of Japan (Kyoto and Shiga Prefectures); findings are not representative of the national situation. All 11 primary caregivers were mothers; the two fathers who attended were not the primary caregivers, so fathers' perspectives are absent. Qualitative method with 11 participants; the authors themselves note limited generalizability and call for prospective cohort studies. Recruitment through visiting nurse agencies may bias toward families already connected to home-visit services. Thematic saturation was the stopping rule rather than a fixed sample, so the number of participants is not pre-determined.
Declared interests
No conflicts of interest declared. Funded by a Grant-in-Aid for Scientific Research (Grant No. 22K17506) from the Japan Society for the Promotion of Science, Ministry of Education, Culture, Sports, Science and Technology.
The easy way to misread this
This is a qualitative description of 11 parents' experiences in one region of Japan. It does not evaluate any intervention or show that any strategy (rooming-in, peer support, service stacking) produces better outcomes. The themes reflect what these particular families found helpful or difficult within Japan's specific service system; they are not evidence that a given approach works, and the findings cannot be transferred to a different country's service landscape without further study.
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