From Feeling Broken to Looking Beyond Broken: Palestinian Mothers’ Experiences of Having a Child With Spina Bifida
Date
2017-03-15
Authors
Nahal, Maha Sudki Hmeidan
Wigert, Helena
Imam, Asma
Axelsson, Åsa B.
Journal Title
Journal ISSN
Volume Title
Publisher
SAGE Publications
Abstract
Spina bifida (SB) is the second most common birth defect worldwide. Mothers
of children with SB face extraordinary challenges due to the complicated
conditions and disability of their children. Little is known about the impact
of these challenges on the mothers’ well-being, particularly in Middle Eastern
culture, where chronic illness and disability are perceived as a stigma, and
care of disabled children has traditionally been the responsibility of the
mother. The aim of this study was to illuminate mothers’ lived experience
of having a child with SB in Palestine. Twenty Arab-Muslim mothers living
in Palestine were purposefully recruited from several rehabilitation centers
in Palestine and were interviewed in 2014. The transcribed interviews
were analyzed according to phenomenological hermeneutics. The mothers’
experiences were described in the main theme: From feeling broken to looking beyond broken. Four themes were interwoven: living with constant
anxiety, living with uncertainty, living with a burden, and living with a difficult
life situation. These findings highlight the burden and resilience of the Arab-
Muslim Palestinian mothers while striving to maintain the well-being of the
whole family as well as facilitating the child’s welfare.
Description
Keywords
mothers , spina bifida , phenomenological hermeneutics , Arab-Muslim mothers , qualitative , Palestine