Murayama Shiho, Doering Jennifer J, Sawin Kathleen J
School of Nursing, University of Wisconsin-Milwaukee, 1921 E. Hartford Avenue, Milwaukee, WI 53211, USA.
Graduate School of Health and Welfare Science, International University of Health and Welfare, 4-1-26 Akasaka, Minato-ku, Tokyo 107-8402, Japan.
Health Care Transit. 2024 Nov 14;2:100080. doi: 10.1016/j.hctj.2024.100080. eCollection 2024.
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.
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.
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.
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.
患有脊柱裂的青少年有着复杂的发育和医疗保健需求。医疗保健的改善意味着人们对了解和支持脊柱裂儿童向成年期过渡的需求有了更大的兴趣。然而，在日本，患有脊柱裂的青少年在过渡期间的经历仍然未知。本研究的目的是描述日本患有脊柱裂的青少年向成年期过渡的经历。
采用定性描述性设计来探索患有脊柱裂的青少年的经历。8名年龄在20至29岁之间的青少年参与了半结构化访谈。
确定了六个核心主题：(a) 就业困难；(b) 寻找“成年”的意义；(c) 学习进行自我管理；(d) 推进并担忧成人医疗保健；(e) 建立并维持与朋友的关系；(f) 拓宽经历范围。
本研究有助于识别日本患有脊柱裂的青少年经历中的挑战和积极方面，并分享了作为日本脊柱裂患者如何“成年”的独特观点。在向成年期过渡的过程中，尤其是在找工作、与朋友建立关系以及向成人医疗保健过渡时，参与者一直在经历挣扎。本研究中的参与者在努力实现与成年相关的里程碑以及向成人医疗保健过渡时所面临的挑战表明，需要扩大反映日本社会背景的支持和医疗保健举措。
