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It's not what you were expecting, but it's still a beautiful journey: The experience of mothers of children with Down syndrome

The purpose of this study was to describe qualitatively the experience of parenting for mothers of a child with Down syndrome.

Authors:

Pillay D; Girdler S; Collins M; Leonard H

Authors notes:

Disability and Rehabilitation. 2012;34(18):1501-1510

Keywords:

Coping, Down syndrome, Mothers, Spirituality

Abstract

The purpose of this study was to describe qualitatively the experience of parenting for mothers of a child with Down syndrome and to explore what if any was the role of spirituality and organized religion in this experience.

In this study, stressful life events recounted by the mothers included initial acceptance, developmental behaviour of the child, functionality of the child, health conditions and financial stress.

Overall spirituality was described as a stronger and more dynamic source of support than organized religion in coping with stressors and life's challenges associated with raising a child with Down syndrome.

Findings from this study revealed that being a mother to a child with Down syndrome can best be described as a mosaic of experiences, emotions and a journey of self growth.

Both spirituality and organized religion to a greater or lesser extent were useful in mediating stress and supporting mothers particularly during challenging life events in the course of their journey with their child with Down syndrome.

Implications for Rehabilitation Being a mother to a child with Down syndrome has been described as a mosaic of experiences and emotions including a journey of self growth.

The birth and diagnosis of a child with Down syndrome are most difficult and stressful experience for a mother.

Supports such as family, friends, spirituality and religion can play a key role in helping mothers of children with Down syndrome cope.

Health care providers need to understand the significance of holistic support systems for families with a child with Down syndrome.