Children with Complex Medical Care Needs and Carers
Study on the Care Burden of Family Carers Raising
Ambulatory Children with Complex Medical Care Needs
Project Overview and Background
Changing conditions of children and new challenges arising from mobility
Withthe advancement of medical technology, the conditions of children who require daily medical care evolve in diverse ways as they grow. Along with these changes, the burden on family carers has become a serious issue. Previous research has explored service shortages, economic burdens, and the use of technology; however, the perspective of how a child’s growth and changes in their physical condition affect the family's burden has not been sufficiently clarified.
Notably, a recent study (Maeda et al., 2023) revealed that even when a child's motor functions improve, the burden on the family is not necessarily reduced—it often becomes heavier or remains at a high level. While the improvement of physical function is a positive development, it brings new, unseen difficulties to the caregiving environment.
In this project, we focus on children who have gained the ability to move independently through improved motor functions, collectively referring to them as Ambulatory Children with Complex Medical Care Needs. We are conducting questionnaire and interview-based surveys with their families to better understand these shifting realities.
Toward Realistic Advocacy and the Achievement of Inclusion
For Ambulatory Children with Complex Medical Care Needs—who could be considered a new category of disability—and their families to continue living "ordinary lives" in their communities, it is essential not only to expand public support but also to enrich informal services involving diverse stakeholders.
By identifying the true factors affecting the burden on family carers through this research, we aim to provide more realistic policy recommendations to the government, ensuring that support reaches those currently underserved byexisting systems.
Research Progress and History
Apr 2025
Launched the study on the care burden of family carers raising "Ambulatory Children with Complex Medical Needs" (Ethics Committee Approval Number: OUKS25001).
Aug 2025
Commenced questionnaire surveys for family carers
Oct 2025
Commenced interview-based surveys for family carers.
Apr 2026
Towards a Dynamic Framework of Care Burden: An Interim Analysis of Family Carers Raising Independently Mobile Technology-Dependent Children in Japan/ Ikuko Tomomatsu and Beverley Anne Yamamoto(BSA Annual Conference 2026)
Dissemination
■ Children with Complex Medical Care Needs and Carers
