Raising a child with a disability: a one-year qualitative investigation of parent distress and personal growth

Abstract

Research investigating the impacts of raising children with various disabilities has predominantly been cross-sectional and deficit focused. This one-year project used a salutogenic framework to investigate how parents may personally grow from raising their child, without ignoring the role that distress plays in the development of growth. Interpretative phenomenological analysis was used to examine the lived experience of 33 parents (five fathers, 28 mothers) raising children with a disability, at two time points across a one-year period. Five superordinate themes and 15 constituent themes were extracted from the data. Parents were positively and negatively impacted by their caregiving experience, reporting ongoing distress and personal growth. Growth was conceptualised as post-traumatic growth, which primarily resulted from coping processes following earlier distress and grief. While decreasing over time, parents continued to intermittently experience grief and distress, using a variety of coping strategies and resources to manage demands and optimise opportunities for growth.

Keywords:

• Salutogenesis
• sense of coherence
• posttraumatic growth
• distress
• qualitative
• phenomenology

Acknowledgments

The authors wish to thank Carers Australia Queensland and the Community Resource Unit, Brisbane, for their continued support via recruitment of participants, which allowed us to conduct psychological research aimed at enhancing the well-being of parents of children with disabilities. The authors are also grateful to the parents who gave their time to make this project possible.

Disclosure statement

No potential conflict of interest was reported by the authors.