RESUMO
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.
RESUMO
Purpose: Pediatric cancer is a difficult experience for children and their families. It is thus necessary to promote family resilience for the effective treatment and quality of life improvement among children with cancer. The aim of this systematic review was to identify the components of a resilience-promoting program for children with cancer and their families and to synthesize the literature findings on the outcomes of the resilience-promoting program. Method: A systematic search of the literature was conducted using five databases (PubMed, CHIAHL, PsycINFO, Web of Science, and Research Information Sharing Service) up to July 22, 2020. The search was limited to studies published in English and Korean, and to grey literature published in Korea. Studies were critically appraised using the Mixed Methods Appraisal Tool and Cochrane Risk of Bias tool. Extracted data were summarized as tables. Results: Eight studies were selected. The main components of the resilience-promoting program were providing information (on strategies, medical and psychoeducation, and community resources) and emotional coping (expressing feeling, reappraising cognition about adversity, and stress management). The main outcomes of these programs were reinforced outcomes (resilience, benefit finding, coping, positive affect, problem-solving skills, family adaptation, and self-concept) and improved outcomes (in depression, posttraumatic stress, anxiety, impact of illness of the family, and mood). Conclusion: As the components and outcomes of family resilience-promoting programs vary, it is necessary to consistently use valid tools to effectively identify interventions. Additionally, various methodological studies are required to further analyze the effect of these programs.
