Experiences of mothers of children with Down syndrome

Dokuz Eylül University School of Nursing, Izmir, Turkey.
Paediatric nursing 06/2006; 18(4):29-32. DOI: 10.7748/paed2006.
Source: PubMed


This qualitative study explored the experiences and lifestyles of families in Turkey with children with Down syndrome, including the impact on family members. Twelve mothers with a Down syndrome child (three from each of the age groups 1-3 years, 4-6 years, 7-12 years and 13-18 years of age) participated in the study. The data were collected during in-depth interviews and were evaluated using qualitative data analysis methods. Families were affected socially, physically, economically and emotionally by having a child with Down syndrome.

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    • "Finally, most studies examining siblings of children with disabilities rely on samples that include only one type of chronic condition. For example, some use samples of families raising a child with a physical disability (Hollidge, 2001; Lewin et al., 2005; Pit-ten Cate & Loots, 2000), whereas others focus on sibling relationships in families raising children with intellectual disabilities (Cuskelly & Gunn, 2006; Guralnick, Hammond, Connor, & Neville, 2006; Mikami & Pfiffer, 2008; Sari et al., 2006). Only scant research that compares sibling relationships across groups exists. "
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    ABSTRACT: Purposes/Aims:To discover information about fathers’ and mothers’ perceptions of sibling relationships in families raising a child with a disability (CWD), specifically examining differences in those perceptions according to specific disorders (autism, DS, orthopedic condition (OC), and diabetes), the age and gender of the sibling and CWD, and parent gender. Background: Relationships among siblings are an integral part of child development and greatly influence family processes. However, information regarding sibling relationships in families rearing a CWD yields ambiguous findings, is limited, and much of the research has used mothers’ or siblings’ own ratings of their relationships rather than also including fathers. Another concern about previous work is some studies focus on sibling relationships in families raising a child with a “physical” disability, whereas other studies focus on sibling relationships in families raising a child with an “intellectual” disability, or one that primarily affects mental and intellectual processes. Yet scant research exists on families raising children with specific physical and intellectual disorders and then compares those sibling relationships across groups. In addition, even though some studies compare the effect of living with a CWD on the siblings, the focus has been on sibling outcomes and problems, rather than a focus on the sibling relationship itself. Indeed, more research is needed to identify if sibling relationships determine the effects specific disorders have on Methods: After Institutional Review Board approval, families (n=108), living in the Intermountain West and raising children with autism, Down syndrome (DS), diabetes, or an orthopedic condition (OC) were recruited from camps, clinics, conferences, and intervention programs. After signing the consent letter, both parents independently completed the 28-item Schaefer Sibling Inventory of Behavior, which ranked sibling behaviors in relation to kindness, involvement, empathy, and avoidance. Mothers also completed a demographic questionnaire. Descriptive statistics, t tests, chi-square, correlations, ANOVA, MANOVA, and MANCOVA were used to analyze the data. Results: Mothers and fathers both rated siblings of children with all disabilities as highly empathetic and rarely avoidant. However, mothers ranked all siblings as more empathetic than did fathers, and older siblings as more avoidant than younger siblings. On the other hand, fathers of children with DS and autism ranked siblings kinder and more involved than siblings of children with OC or diabetes; fathers also ranked male siblings kinder than female siblings. Implications: Even though sibling relationships in families raising a CWD appear to be fairly positive, further research is indicated since this study found differences in sibling relationships according to the type of disability and gender and age of the sibling. In addition, since mothers and fathers had different perceptions of sibling relationships, studying those differences would be important so intervention efforts related to sibling relationships may be improved and individualized according to the type of disability. Finally, since older siblings tended to be more avoidant than younger siblings, interventions aimed at understanding older siblings’ tendency to avoid the CWD would be important. Your uploaded file(s): * KRISTA ABSTRACT.doc (25.0KB) - Research paper
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    ABSTRACT: Down syndrome is a cronic condition that can be regarded as a prototype to the complexity of management of children with special needs. This complexity involves medical, emotional, social, economic and educational aspects. The role of the primary physician in preserving continuity, while keeping effective coordination with other providers is an essence. Accessibility and the ability to care for these patients in a family centerd orientation are major strengths of the primary physician. However, these are traded-off with the limited ability of the primary physician in keeping-up with the level of expertise of the sub-specialists. As co-morbidity of children with special needs demands the intervention of many consultants it is essential that the mode of each patient will be tailored based on the local facilities and the values and demands of the families.
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