Choi Eun Kyoung, Park Jisu, Kim Kyua, Bae Eunjeong, Ji Yoonhye, Yang Seung Hyeon, Chinbayar Altantuya, Yun Hyeseon
College of Nursing, Mo-Im Kim Nursing Research Institute, Yonsei University, Seoul, Republic of Korea.
Department of Nursing, Yonsei University Graduate School, Seoul, Republic of Korea.
BMC Nurs. 2023 Feb 20;22(1):46. doi: 10.1186/s12912-023-01194-z.
Transition to adulthood to live independently while self-managing health and daily life without parental help is crucial for young adults with chronic conditions. Despite its importance as a precursor to effectively managing lifelong conditions, little is known about the experiences of young adults with spina bifida (SB) in transition to adulthood in Asian countries. This study aimed to explore the experiences of Korean young adults with SB to identify the facilitators or barriers to the transition from adolescence to adulthood from their perspectives.
This study used a qualitative descriptive design. The data were collected in South Korea through three focus group interviews with 16 young adults with SB, aged 19-26, from August to November 2020. We conducted a qualitative content analysis using a conventional approach to identify the factors that facilitated and hindered the participants' transition to adulthood.
Two themes emerged as facilitators and barriers to the transition to adulthood. a) Facilitators: understanding and acceptance of SB, acquiring self-management skills, parenting styles encouraging autonomy, parents' emotional support, school teachers' thoughtful consideration, and participation in self-help groups. b) Barriers: overprotective parenting style, experience of being bullied by peers, damaged self-concept, concealing one's chronic condition from others, and the lack of privacy in school restrooms.
Korean young adults with SB shared their experiences of struggling to properly manage their chronic conditions on their own, particularly concerning regular bladder emptying, during the transition from adolescence to adulthood. To facilitate the transition to adulthood, education on the SB and self-management for adolescents with SB and on parenting styles for their parents are important. To eliminate barriers to the transition to adulthood, improving negative perceptions of disability among students and teachers and making school restrooms CIC-friendly are needed.
对于患有慢性病的年轻人来说，在没有父母帮助的情况下过渡到成年并独立生活，同时自我管理健康和日常生活至关重要。尽管这作为有效管理终身疾病的前提很重要，但在亚洲国家，关于患有脊柱裂（SB）的年轻人向成年期过渡的经历知之甚少。本研究旨在探讨韩国患有SB的年轻人的经历，从他们的角度确定从青少年过渡到成年的促进因素或障碍。
本研究采用定性描述性设计。2020年8月至11月，在韩国通过对16名年龄在19 - 26岁的患有SB的年轻人进行三次焦点小组访谈收集数据。我们采用传统方法进行定性内容分析，以确定促进和阻碍参与者向成年期过渡的因素。
出现了两个作为向成年期过渡的促进因素和障碍的主题。a）促进因素：对SB的理解和接受、获得自我管理技能、鼓励自主的养育方式、父母的情感支持、学校教师的体贴关怀以及参与自助小组。b）障碍：过度保护的养育方式、被同龄人欺负的经历、受损的自我概念、向他人隐瞒自己的慢性病以及学校卫生间缺乏隐私。
韩国患有SB的年轻人分享了他们在从青少年过渡到成年期间努力自行妥善管理慢性病的经历，特别是在定期排空膀胱方面。为了促进向成年期的过渡，对患有SB的青少年进行关于SB和自我管理的教育以及对其父母进行养育方式教育很重要。为了消除向成年期过渡的障碍，需要改善学生和教师对残疾的负面看法，并使学校卫生间对大小便失禁者友好。
