Transition to adulthood: Experience of Japanese youth with spina bifida

Background

Emerging adults with spina bifida have complex developmental and health care needs. Improvement in healthcare means there is greater interest in understanding and supporting the transition needs of children with spina bifida to adulthood. However, the experiences during transition for emerging adults with spina bifida in Japan remain unknown. The purpose of this study was to describe the experiences of transition to adulthood for emerging adults with spina bifida in Japan.

Methods

Qualitative descriptive design was used to explore experiences of emerging adults with spina bifida. Eight emerging adults between 20 and 29 years participated in semi-structured interviews.

Results

Six core themes were identified: (a) struggling with employment, (b) finding the meaning of “becoming an adult”, (c) learning to implement self-management, (d) proceeding with and worrying over adult health care, (e) establishing and maintaining relationships with friends, and (f) broadening scope of experiences.

Conclusions

This study contributed to identification of both challenges and positive aspects in experiences of emerging adults with spina bifida in Japan. Participants shared the unique perspective of how to “become an adult” as a person with spina bifida in Japan. Ever-present were participants’ experiences of struggling during transition to adulthood, especially when trying to find a job, establishing relationships with friends, and making the transition to adult health care. The challenges participants in this study faced striving to achieve adulthood-related milestones and transition to adult health care suggest that expansion of support and health care initiatives that reflects the Japanese social context are needed.