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
    42nd Annual Communicating Nursing Research Conference Western Institute of Nursing; 04/2009
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    ABSTRACT: This phenomenological study explored Iranian mothers’ lived experiences of having a child with mental retardation (MR). Six mothers parenting a child with MR who attended a School for Exceptional Children were interviewed. Semi-structured interviews which encouraged the mothers to describe their experiences were audiotaped, transcribed and analyzed in accordance with Colaizzi’s (Existential phenomenological alternatives for psychology, New York, Oxford University Press, 1978) procedural steps. Six major themes were found in the data: Challenging the process of acceptance, painful emotional reactions, the inter-relatedness of the mother’s health and the child’s well being, struggles to deal with oneself or the child, inadequate support from the family and community, and anxiety related to the child’s uncertain future. Findings from this study contribute to a preliminary understanding of Iranian mothers’ experiences and needs. The results suggest introductory changes in nursing practice, staff education and program development to best serve mothers and their children with MR.
    Journal of Developmental and Physical Disabilities 07/2008; 20(4):317-326. DOI:10.1007/s10882-008-9099-3 · 1.56 Impact Factor
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