Transition to Adulthood: Experience of Youth with Spina Bifida in Japan

Abstract

Purpose: The purpose of this dissertation was to describe the experiences of transition to adulthood for emerging adults with spina bifida (SB) in Japan.Background: Spina bifida is one of the most common congenital conditions that affect functions of multiple body systems, including orthopedic, urologic, gastrointestinal, neurological, and cognitive. The prevalence of SB in Japan was 5.18 cases per 10,000 in 2012 and the long-term trends of the prevalence did not decline despite the recommendation of folic acid intake by the Japanese Government in 2000. Over 70% of individuals with this condition can survive into adulthood today because of the advancement of neurological management. As a result, transition to adulthood became one of the most significant issues for individuals with SB and their families in Japan. However, experiences during transition for emerging adults with SB in Japan remains unknown. Methods: Qualitative descriptive design was used to explore experiences of the emerging adults with SB during transition to adulthood. Semi-structured telephone or Skype interviews were conducted with eight emerging adults with SB aged between 20 and 29 years living in Japan. Results: Six core themes were identified: (a) struggling, (b) finding the meaning of “being an adult”, (c) learning to implement self-management, (d) health care, (e) processes and challenges in establishing and retaining relationship with friends, and (f) broadening scope of experiences. The findings highlighted participants’ experiences of struggling during transition to adulthood. In particular, participants had shared experiences of struggling to find a job and with working. Some participants also described their experiences of transferring to adult health care without planning or preparation. Discussion: Three manuscripts were generated in this dissertation: two syntheses of literature written in English and published in Japanese journals, respectively, and a qualitative descriptive study. In the qualitative findings, participants’ experiences of struggling during transition to adulthood were persistent and sustained, especially when trying to find a job and making the transition to adult health care. Health and social programs assisting emerging adults with SB in achieving milestones for adulthood and transitioning to adult health care in Japanese social and health care context are needed.