Department of Psychology, Stellenbosch University, Stellenbosch, South Africa.
Disabil Rehabil. 2021 Apr;43(7):920-928. doi: 10.1080/09638288.2019.1647293. Epub 2019 Aug 1.
Spina bifida myelomeningocele is a major cause of disability among adolescents. However, little research is available in low-income nations such as South Africa. Investigating the contributors and hindrances to well-being in adolescents with spina bifida myelomeningocele may yield novel insights. In this study we included both adolescents and their primary caregivers to examine their perspectives on caring for and facilitating improvements in the life of the adolescents living with spina bifida myelomeningocele.
To identify and document the perceptions of adolescents with spina bifida myelomeningocele and their primary caregivers on the factors that contribute to and hinder the well-being of adolescents living with spina bifida myelomeningocele in South Africa.
An explorative qualitative research design was utilized, guided by a positive psychology theoretical framework. Fourteen participants, consisting of seven adolescent-primary caregiver dyads, were interviewed. Data were analyzed using thematic analysis and coded inductively using ATLAS.ti software.
We identified eight themes describing participants' perceptions on contributors and hindrances to the well-being of adolescents with spina bifida myelomeningocele. Contributing factors included: family support, social groups, special needs education, sport participation, striving for independence, and finding meaning in life. Hindrances included: structural (lack of resources, medical care and mobility challenges) and social (bullying and harmful friendships, secrecy about the condition, social isolation and unhappiness) hindrances to well-being.
Acknowledging the contributors and hindrances to the well-being of adolescents with spina bifida myelomeningocele is crucial for guiding informed positive interventions and preventing blind spots. Given the limited number of positive contexts, concentrated effort is required to facilitate opportunities for growth in a range of environments. Primary caregivers lack insight into the positive and negative aspects of the adolescents' lives. We suggest families prioritize bonding time and open communication.Implications for rehabilitationExploring the perspectives of adolescents living with spina bifida and their parents regarding well-being is important to develop appropriate interventions.Adolescents living with spina bifida value social support and social interaction as ways to maintain well-being.Special needs education institutions with curriculums tailored to adolescents with spina bifida promote comfort, acceptance, and personal excellence.Sport contributes to the mental, social and physical well-being of adolescents with spina bifida. Sport inspires and offers opportunities for success, it improves school attendance, increases positive affect, and provides opportunities for close relationships with friends and family.Finding ways to mitigate the stigma around spina bifida is necessary to improve adolescents' well-being within South Africa.
脊柱裂伴脊髓脊膜膨出是青少年残疾的主要原因。然而，在南非等低收入国家，相关研究很少。研究脊柱裂伴脊髓脊膜膨出青少年的幸福感的促成因素和障碍因素，可能会产生新的见解。本研究纳入了青少年及其主要照顾者，以检查他们对照顾和促进脊柱裂伴脊髓脊膜膨出青少年生活的看法。
确定并记录脊柱裂伴脊髓脊膜膨出青少年及其主要照顾者对以下因素的看法，这些因素有助于和阻碍生活在南非的脊柱裂伴脊髓脊膜膨出青少年的幸福感。
采用探索性定性研究设计，以积极心理学理论框架为指导。共有 14 名参与者，包括 7 对青少年-主要照顾者，接受了访谈。使用主题分析和 ATLAS.ti 软件进行归纳编码对数据进行分析。
我们确定了八个主题，描述了参与者对有助于和阻碍脊柱裂伴脊髓脊膜膨出青少年幸福感的因素的看法。促成因素包括：家庭支持、社会团体、特殊需要教育、参与体育运动、争取独立以及在生活中找到意义。阻碍因素包括：结构（资源匮乏、医疗保健和行动障碍）和社会（欺凌和有害友谊、对病情保密、社会孤立和不快乐）方面对幸福感的阻碍。
认识到脊柱裂伴脊髓脊膜膨出青少年幸福感的促成因素和障碍因素对于指导知情的积极干预和防止盲点至关重要。鉴于积极环境的数量有限，需要集中精力为青少年在各种环境中成长创造机会。主要照顾者对青少年生活的积极和消极方面缺乏了解。我们建议家庭优先考虑亲子时间和开放沟通。
探索生活在脊柱裂伴脊髓脊膜膨出中的青少年及其父母对幸福感的看法，对于制定适当的干预措施非常重要。生活在脊柱裂伴脊髓脊膜膨出中的青少年重视社会支持和社交互动，以此来维持幸福感。有针对脊柱裂伴脊髓脊膜膨出青少年的课程的特殊需要教育机构可以促进舒适、接受和个人卓越。体育运动有助于脊柱裂伴脊髓脊膜膨出青少年的身心健康。体育运动激发和提供成功的机会，提高出勤率，增加积极情绪，并提供与朋友和家人建立亲密关系的机会。找到减轻脊柱裂污名的方法对于改善南非青少年的幸福感是必要的。
