Illness Experiences of Adults with Spina Bifida: Protecting the Whole Self

Lim, Seoung-Wha; Yi, Myungsun

doi:10.1016/j.anr.2020.12.001

Cited by 4 publications

(7 citation statements)

References 41 publications

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“…Previous research on the social and emotional adjustment of Swedish adolescents with SB showed that adolescents with milder physical disabilities had the most prominent signs of social and emotional problems [ 31 ]. Adolescents without visible disabilities tend to have ambiguous identities, being at the boundary between healthy people and people with disabilities [ 19 , 31 ]. For example, there may be more tension around toilet issues because their peers cannot directly observe the disability [ 31 ].…”

Section: Discussionmentioning

confidence: 99%

“…If bladder or bowel emptying is not properly managed and urinary or fecal incontinence occurs, adolescents are at risk of feeling extreme shame and psychosocial isolation and damage to their interpersonal relationships [ 38 , 39 ]. These experiences can negatively affect their school life and community participation and consequently decrease their quality of life [ 19 , 32 , 34 , 38 , 39 ]. They indicate that interventions to enhance self-management skills should be provided to aid smooth transition.…”

Section: Discussionmentioning

confidence: 99%

“…Consistent with previous studies, the current findings showed that peer relationships and school teachers had both positive and negative influences on their transition [ 31 , 34 , 36 , 38 ]. These influences ranged from supportive relationships to intrusive questions about prolonged toilet use, teasing, or bullying [ 19 , 31 , 34 , 36 , 38 ]. Peer relationships are important not only for transitions to adulthood as a relational factor but also in terms of social facilitation, contributing to health-promoting behaviors [ 37 ].…”

Section: Discussionmentioning

confidence: 99%

“…These experiences hindered the transition to adulthood by lowering their self-concept and hampering self-management. As culture is an important factor that can influence people’s thoughts and behaviors [ 16 , 19 , 34 , 40 ], the sociocultural barriers identified in this study need to be addressed considering the Korean context, in which self-concept develops from an interdependent perspective [ 16 ]. Above all, self-concept, including self-esteem, self-confidence, and self-efficacy, is crucial to improve the self-management and independence of adolescents with SB [ 35 ].…”

Section: Discussionmentioning

confidence: 99%

“…In the collectivist culture, people with disabilities report more difficulties due to the social stigma toward disabilities [ 16 ]. Additionally, adolescents with SB have described experiencing a constant struggle between concealing and disclosing their health conditions to others [ 17 – 19 ]. Considering the cultural impact on the transition to adulthood [ 10 ], it is unknown how collectivist cultural characteristics, such as social stigma related to disabilities or having a different appearance, might have negative influence on the transition of adolescents with SB.…”

Section: Introductionmentioning

confidence: 99%

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Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study

et al. 2023

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Background 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. Methods 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. Results 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. Conclusions 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.

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