Parents' Needs Concerning Their Children with Spina Bifida in South Korea: A Mixed Method Study

Choi, Eun Kyoung; Ji, Yoonhye; Bae, Eunjeong; Jang, Mina

doi:10.1016/j.pedn.2019.04.018

Cited by 10 publications

(5 citation statements)

References 30 publications

(8 reference statements)

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“…Despite existing research, the transition experiences of adolescents with clinically mild SB and their influencing factors have not been fully explored; thus, the present findings can serve as a foundation to support their transition to adulthood. In Korea, there are few studies on the transition to adulthood among adolescents with SB, and there is no healthcare system, institutional, or policy support to develop clinical practices for their transition to adulthood [ 14 , 15 , 23 ]. Therefore, we suggest that, similar to Health People 2030 in the United States, supporting the transition of adolescents with chronic conditions into adulthood should be set as a public health goal in Korea and policies, healthcare systems, and practices are needed to support the same.…”

Section: Discussionmentioning

confidence: 99%

“…On the contrary, in Korea, there are few transition support programs for adolescents and young adults with SB [ 14 ]. However, the findings from the previous study regarding needs of parents who have adolescents with SB in Korea suggest developing supportive programs to enable adolescents with SB to prepare for the future regardless of the disability [ 15 ].…”

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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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2023

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“…This finding is in line with a previous integrative review of transition of AYAs with chronic disabilities, where all selected studies were conducted in developed Western countries (Zhou et al., 2016). Although difficulties experienced by AYAs with SB and their families are universal, the degrees of difficulty and types of intervention differ between Western and Eastern countries owing to cultural differences (Choi et al., 2019). Therefore, it is also necessary to develop a transition program that takes into account the cultural characteristics of Eastern and developing countries.…”

Section: Discussionmentioning

confidence: 99%

“…AYAs with SB and their families are universal, the degrees of difficulty and types of intervention differ between Western and Eastern countries owing to cultural differences (Choi et al, 2019). Therefore, it is also necessary to develop a transition program that takes into account the cultural characteristics of Eastern and developing countries.…”

Section: Lindsay Et Al (2016)mentioning

confidence: 99%

Transition programs for adolescents and young adults with spina bifida: A mixed‐methods systematic review

Choi

Bae

Jang

2020

Journal of Advanced Nursing

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Spina bifida (SB) is one of the most common congenital malformations. It is caused by a failed closure of one or more vertebrae during the early weeks of gestation and results in significant neurological impairment at or below the lesion site (Copp et al., 2015). SB is the most complex of the congenital disorders that infants are expected to survive (Phillips et al., 2017); approximately 85% of individuals with SB are expected to survive to adulthood owing to medical advances (Spina Bifida Association, 2018). However, despite the advances in medical care and treatment, patients with SB continue to experience a range of functional impairments in areas such as walking and voluntary bowel and bladder control (Şahiṅ et al., 2014).

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“…The parents who work with their children with SB to manage bladder and bowel care have been found to structure their lives around bladder and bowel management for everyday management and unexpected incontinence [ 11 ]. They tend to cooperate to hide bladder and bowel disorders from people around the children with SB [ 7 ].…”

Section: Introductionmentioning

confidence: 99%

Changes in Correlates of Health-Related Quality of Life Between Children with Spina Bifida and Their Parents as Influenced by Their Level of Independence in Toileting Self-Management: A Cross-Sectional Study

Kawahara,

Yamazaki

2024

Cureus

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Background Spina bifida (SB) leads to various complications, such as bladder and bowel disorders, which can significantly impact quality of life (QOL). Parents of children with SB are often heavily involved in bladder and bowel management, which can affect their own QOL. Therefore, transitioning to independent bladder and bowel management is pivotal because it influences the QOL of both children with SB and their parents. In this study, we investigated changes in health-related quality of life (HRQOL) among children with SB and their parents in the process of attaining independence in bladder and bowel self-management. Methods Children with SB aged 8-17 years and their parents completed the Japanese version of the QOL assessment in SB for children/teenagers (QUALAS-C/T-J) and the Short Form-8 (SF-8). Independence in bladder and bowel management was assessed using a visual analogue scale (VAS). We calculated the correlation between children’s or parents’ HRQOL and the children’s level of independence in bladder and bowel management. Additionally, we conducted a Mann-Whitney U test on the scores of the higher and lower independence groups. The correlation between parent and child HRQOL was analyzed by dividing children’s independence into two groups. Results This study consisted of 83 parent-child pairs. Parents’ and children’s HRQOL and levels of self-management independence were not significantly correlated, either overall or by level of independence. The parent-child group with less independence, especially in bowel management, showed moderate to strong HRQOL correlations, whereas the group with more independence showed weaker correlations. Conclusions The strength of the correlation for parent-child HRQOL was found to change based on the level of independence in bladder and bowel self-management. These results suggest that the strength of parent-child cohesion tends to be pronounced in regard to the children’s degree of independence in bowel management.

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Parents' Needs Concerning Their Children with Spina Bifida in South Korea: A Mixed Method Study

Cited by 10 publications

References 30 publications

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

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

Transition programs for adolescents and young adults with spina bifida: A mixed‐methods systematic review

Changes in Correlates of Health-Related Quality of Life Between Children with Spina Bifida and Their Parents as Influenced by Their Level of Independence in Toileting Self-Management: A Cross-Sectional Study

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