Palestinian children's narratives about living with spina bifida: Stigma, vulnerability, and social exclusion
Palestinian children's narratives about living with spina bifida: Stigma, vulnerability, and social exclusion
Date
2018-10-07
Authors
Nahal, Maha Sudki
Axelsson, Åsa B.
Imam, Asma
Wigert, Helena
Journal Title
Journal ISSN
Volume Title
Publisher
John Wiley & Sons Ltd
Abstract
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.
Description
Keywords
Arab Muslim, children narratives, Palestine, phenomenological hermeneutical, spina bifida, stigma
Citation
Nahal MS, Axelsson ÅB, Imam A, Wigert H. Palestinian children's narratives about living with spina bifida: Stigma, vulnerability, and social exclusion. Child Care Health Dev. 2019;45:54–62. https://doi.org/10.1111/ cch.12625