Caregiver Experiences of Caring for a Down Syndrome Child in Saudi Arabia

Abstract

Background: Down Syndrome (DS) is a genetic disorder that causes various intellectual and physical developmental problems.Despite the high incidence of DS in Saudi Arabia (SA), there is a dearth of research on the experience of families—especially of the primary caregiver (mother)—with a child with DS in SA. Additionally, the effect on a caregiver’s life of caring for a child with DS in SA is not clear. Objectives:To present the findings of interpretive research which identified and described the qualitatively different ways Saudi Arabian (SA) women as primary caregivers’ understood the experience of caring for a child with Down syndrome (DS). Methods: We conduct a qualitative study as an innovative research designduring November 2011 to January 2012 on 18 mothers caring for children with DS in Riyadh, Jeddah and Dammam in SA. Methods were guided by accepted phenomenograpic approaches to data collection and analysis. Semi- structured interviews were undertaken with 18Saudi mothers caring for children with DS from centers in three regions of SA (Jeddah, Riyadh and Dammam. Results: Five categories of description were identified and revealed unique awareness of the group and provide insight into their personal, social and collective understanding (being excluded, being isolated, being disappointed, having difficulty accessing services and needing support). The findings contribute to knowledge needed to support mothers caring for children with DS in SA. The research is useful to inform strategies for supporting families of children with DS, women in similar contexts, and healthcare disability policy and implementation. Conclusions: Mothers caring for children with DS In SA have qualitatively different understanding of their experiences in caring for their children with DS. In this article Implication are discussed Disclosure: I certify that this paper does not incorporate without acknowledgement any material previously submitted in any Journals; and that to the best of my knowledge and belief it does not contain any material previously published or written by another person except where due reference is made in the Keywords: Down syndrome; Saudi Arabia; women; family; middle eastern culture; disability; carers; phenomenography; qualitative research