The Experiences of Omani Mothers Caring for Children with Cerebral Palsy (CP): A Grounded Theory Study

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Abstract

Background: Cerebral palsy is the most common type of childhood neurological and developmental disability (Dababneh, 2013; Rosenbaum et al., 2006; Shikako-Thomas et al., 2009; Waters et al., 2005). It is estimated that a total of 2 to 2.5 of every 1000 live births are of children who have CP (Rosenbaum, 2003; Schiariti et al., 20014), resulting in a considerable number of parents and families who are raising a child with CP (Reid et al., 2011). The review of the literature identified that globally mothers were most often the primary caregivers of these children and as a result they experienced several physical, social and emotional challenges. It was also identified that culture played an important role in shaping mothers' experiences. However, there is an absence of qualitative studies that explore the experiences of mothers caring for children with CP in Arabic countries in general and none in Oman in particular. Aim: The aim of this study was to develop a theory that explains the experience of mothering a child with CP in the Omani culture. Methodology: Charmaz's (2014) approach to grounded theory research informed sampling, data collection and the analysis process. The study was conducted in the two largest governorates in Oman (Muscat and North Batinah). 23 Omani mothers caring for children (5 to 18 years) diagnosed with CP were recruited through purposive and theoretical sampling from a hospital and five community-based rehabilitation centres. Semi-structured interviews including 23 face-to-face interviews and six follow-up telephone interviews were used for data collection. Findings: The findings of the study suggest that the beliefs of Islam and the Omani culture influenced the mothers' daily experiences in caring for their children with CP. "Being a patient (sabir) mother" is the theory that was developed from the data and explains the mothersâ€Â™ perceptions and beliefs about being a mother of a child with CP and their actions and roles in caring for their child with CP. This theory links the two subcategories: "patience (sabr) as faith" and "practising patience (sabr)". "Patience (sabr) as faith" presents the mothers' religious beliefs and how these beliefs encouraged them to accept with patience (sabr) being a mother of a child with CP. "Practising patience (sabr)" explains how the mothers were patient (sabir) in performing their actions and roles in caring for their children with CP. Discussion: The study revealed a unique cultural experience of caring for a child with CP for mothers. Religious beliefs and social values appeared to play an important role in the mothers' experiences of caring for their child with CP. Islamic religious beliefs were a major source of emotional support that transformed the mothers' experiences of caring for a child with CP from one of hardship to one of value. In addition, the Omani culture was an important source of support that resulted in the mothers appearing to have a more positive experience of caring for a child with CP when compared to the literature describing the experiences of mothers caring for a disabled child in other cultures. Conclusion: The findings of this study suggest that Omani mothers cared for their disabled child with patience (sabr) despite limited resources and lack of support from services. Although there are cultural differences between Oman and other Arabic cultures, the findings added to the knowledge on how Arab-Muslim mothers perceive and act with patience (sabr) while caring for their child with CP.

Keyword(s)

Cerebral Palsy; Experiences; Mothers

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