From Feeling Broken to Looking Beyond Broken: Palestinian Mothers’ Experiences of Having a Child With Spina Bifida

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.

Challenges and Determination: The Case of Palestinian Parents of Children With Disabilities

“…At the mezzo level, our results are similar to other studies conducted in different Arab and non-Arab countries (Manor-Binyamini & Abu-Ajaj, 2017) and the United States (Ambikile & Outwater, 2012; Azaiza et al, 2006; Daire et al, 2011; Green, 2004; Nahal et al, 2017), particularly, late and inaccurate diagnosis of children with autism spectrum disorder. Williams and Brayne (2006) argue that based on current research and existing measures, early screening for autism spectrum disorders before 2 years is still not conceivable.…”

“…Furthermore, they were confused and frustrated and recognized that the lack of information delayed their ability to address their children’s special needs in a timely manner. These findings were mirrored in Nahal et al’s (2017) study of mothers with children with spina bifida in the West Bank. Some mothers reported that medical providers were not empathetic and too direct when sharing the child’s diagnosis, which in turn, intensified their fears and worries.…”

“…At the mezzo level other factors include social and community resources and network support (Azaiza et al, 2006; Daire et al, 2011; Green, 2004), family structure, cultural attitudes and belief systems, and the overall stigmas toward children with disabilities (Spratt, Saylor, & Macias, 2007). In addition, macro issues, including poverty (Bannink, Irdro, & van Hove, 2016), negative social attitudes, political conflict, and instability could further affect parents’ psychological well-being (Abu-Ras & Abu-Bader, 2009; Nahal, Wigert, Imam, & Axelsson, 2017).…”

Arab-Israeli Mothers’ Attribution, Affective, and Behavioral Responses Toward Their Child With a Learning Disability: Examining an Attribution Model of Reactions to Stigma

“…Although, to date, there are no studies on LD stigma in the Israeli Arab society, research shows that people with disabilities are generally stigmatized in Arab societies in Israel and elsewhere (e.g., see Abu-Ras et al, 2018; Al-Aoufi et al, 2012; Al-Thani, 2006; Bazna & Hatab, 2005; Dolev et al, 2016; Gharaibeh, 2009; Nahal et al, 2017). Research shows that Arab families who have a child with a disability tend to experience social embarrassment and shame, and to fear—and experience—social exclusion (Al-Aoufi et al, 2012; Alsayyari, 2017; Dolev et al, 2016; Sandler-Loeff & Shahak, 2006).…”

“…Arab women are expected to fulfill traditional roles associated with femininity, that is, being a wife and a mother (Alsayyari, 2017; Haj-Yahia, 2003). This also entails being the primary caregiver for children with disabilities (Nahal et al, 2017). Research has shown that, compared with Western societies, in Arab societies children are entrusted entirely to the mother in the first 7 to 9 years of their lives.…”