A difference in a family : how does having a young child with an identifiable disability affect the parents’ sense of wellbeing?

Abstract

The aim of this qualitative study is to gain an in-depth understanding of the effects on the parents’ sense of wellbeing when they have a young child with an identifiable disability - Down syndrome (DS). In this study, which uses criterion sampling, five mothers whose children were seven or younger participated in semi-structured interviews. This study aims at adding further knowledge about parents’ holistic experience and reinforcing local research on this topic. The data was analysed through interpretative phenomenological analysis (IPA). Four super-ordinate themes emerged: (a) The journey; (b) Parenting; (c) Parents’ sense of wellbeing; and (d) Parents’ way of coping. Results were interpreted, discussed and contrasted in light of international and local research. The mothers’ stories largely show that their sense of wellbeing was affected both positively and negatively. Their journey is emotionally challenging but despite the challenges they face, their individual coping skills help them lead a better quality of life. This study can provide further understanding of the circumstances encountered by parents of children with DS and can be useful in raising awareness of the syndrome and helping professionals support these parents.