“It’s not what you were expecting, but it’s still a beautiful journey”: the experience of mothers of children with Down syndrome

Abstract

Aim: 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. Method: A homogenous sample of eight mothers of children between 7 and 12 years of age with Down syndrome was recruited through a population-based source of families of children with Down syndrome in Western Australia. In-depth interviews were used to explore the mother’s experience of parenting and to examine the role of spirituality and organized religion in their personal experience of mothering. Results: 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. Conclusion: 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.

Keywords::

• Coping
• Down syndrome
• mothers
• spirituality

Acknowledgments

The authors gratefully acknowledge the participation and ongoing contributions of families in the Down Syndrome NOW Study and in particular the mothers who participated in this qualitative study. They also thank Down Syndrome WA and staff at the Disability Services Commission for their ongoing assistance in the study.

Declaration of Interest: The authors report no conflicts of interest.