Parenting a Child with Down Syndrome: A Phenomenographic Study

In this study, mothers' experiences of parenting a child with Down syndrome are explored. The research employed a phenomenographic methodology. Interviews were conducted with five mothers who had a child with Down syndrome between the ages of three to eight years. The study was conducted in Singapore. Six qualitatively different aspects of the parenting experience are identified. The findings show, despite an immense impact on family life, the mothers did not view their situation in a negative way. Their resilience was evident, although they reported that significant adjustments were made. While the sample size in this exploratory study is small, the findings provide a new understanding about parenting a child with Down syndrome within a particular cultural context. While many quantitative studies have examined the experience of families who have a child with disability (e.g., Ainge, Covin, & Baker, 1998; Benett, DeLuca, & Allen, 1996; Bower, Chant, & Chatwin, 1998; HauserCram, Warfield, Shonkoff, & Krauss, 2001), only a few have employed a qualitative research approach. In this qualitative study, commonalities and the variations of family experiences in parenting a young child with Down syndrome in Singapore are explored. The research extends understanding about the experiences of families who have a child with intellectual disability, within an Asian family context. However, the participation of Asian families does not limit the relevance of the findings to other cultural contexts. The findings provide opportunities to consider personal and professional assumptions made about families and disability across cultural contexts. Within any culture, beliefs and practices are often "unrecognized" because of their "everyday" familiarity. It is only when the beliefs and practices from other cultural groups are considered, that one's personal assumptions about families become more apparent. Research about how ethnicity and culture shape family experiences, provides an opportunity to evaluate assumptions that families also hold on children's development (Parke, 2004; Pumariega, Rogers, & Rothe, 2005). Joosa and Berthelsen 46 Most of the research on the experiences of families who have a child with a disability indicates that, although there may be commonalities in the parenting experiences, the impact differs considerably among families (Bower et al., 1998; Hanson, 2003; Muscott, 2001). In a meta-analysis of studies since 1975, that examined marital strain in families who had a child with a disability, Risdal and Singer (2004) reported that although there was a negative impact, the effect was much smaller than expected. Bower et al. (1998) found in their research that the presence of a child with Down syndrome can no longer be seen as a universal catalyst for family difficulties or family dysfunction. They suggested that the ideas and beliefs of family members, including the extended family, need to be understood in order to appreciate how families cope with the challenges of parenting a child with a disability. Cunningham (1996) noted that the overriding impression of families with a child with Down syndrome is one of normality. The factors influencing the well-being of the family are largely the same as those influencing any family. He cited evidence that pointed to positive effects on the family and their attitudes towards life because the families have strengths and resources to manage the challenges. However, a family may also require different levels of support to manage the demands required by specific health, behavioral and education needs of their child for whom they have little knowledge or experience. Hanson (2003) conducted a long-term follow-up, after 25 years, with families who had a child with Down syndrome and who had participated in an early intervention program. The research explored the parents' parenting experiences across that time span. Significant challenges that were recalled by the families included coping with health and medical problems and events that related to teasing and ostracism of their child by others. Parents also expressed disappointment with the overall lack of support that was available to them through formal services and the poor quality of these services. However, the study also revealed positive outcomes including the joy that the child had brought to the family and the personal growth of family members as a consequence of being a parent or sibling to a child with Down syndrome. In this study, the parenting and family experiences of mothers of young children with Down syndrome, aged three to eight years, are explored. The research sought to identify the commonalities and variations in families' experiences. Key questions for the research were: What is the impact of the birth of a Down syndrome child on family life? What is the experience of parenting a child with Down syndrome in Singapore? a PhenomenograPhic study on Parenting 47