Palestinian children's narratives about living with spina bifida: Stigma, vulnerability, and social exclusion

摘要

Background Living with spina bifida in Palestine is a critical issue that might influence various aspects of the individual's life. It is a challenge for children, their families, and health care providers because it requires lifelong treatment and follow-up of care provision. However, little focus has been placed on these children's perceptions about their daily life experiences with spina bifida. Purpose To illuminate the lived experience of children with spina bifida in the West Bank, Palestine. Methods A qualitative study was conducted using the phenomenological hermeneutical method to interpret the meaning of being a child with spina bifida in Palestine. Ten children with spina bifida, aged 7-18 years, were interviewed. The two local authors independently analyzed the Arabic transcriptions, whereas the two Swedish authors analyzed the transcriptions after translation to English. Finally, the four authors discussed their analysis and reached agreement about the themes. Results Studying the children's experience with spina bifida helped us highlight their feelings, needs, and challenges. The findings were formulated into one main theme, Vulnerability and suffering due to social exclusion and stigma, which was grounded in three themes: Experiencing negative self-concept, Experiencing vulnerability, and Obtaining a sense of security. These three themes were in turn derived from subthemes. Conclusion The Palestinian children in this study faced physical, emotional, and psychosocial challenges, which negatively influenced their health and development. They were vulnerable and stigmatized, and they lived with a negative self-concept. The findings could help health professionals, families, and caregivers to achieve a deeper understanding of what being a child with disabilities entails, and the findings may also serve as a platform for interventions that seek to promote these children's development and to enable them to experience childhood as a meaningful and positive process.