Parenting a Child with Down Syndrome: A Phenomenographic Study

作者: Donna Berthelsen , Esther Joosa

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

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