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

Disabil Rehabil. 2012;34(18):1501-10. doi: 10.3109/09638288.2011.650313. Epub 2012 Feb 11.


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.

MeSH terms

  • Adaptation, Psychological*
  • Adult
  • Child
  • Down Syndrome / psychology*
  • Emotions
  • Female
  • Humans
  • Interviews as Topic
  • Life Change Events
  • Male
  • Mothers / psychology*
  • Parenting / psychology*
  • Physician-Patient Relations
  • Qualitative Research
  • Social Support
  • Socioeconomic Factors
  • Spirituality
  • Stress, Psychological / etiology
  • Stress, Psychological / psychology
  • Surveys and Questionnaires
  • Western Australia