Between joy and sorrow : being a parent of a child with developmental disability

Aim: This study explored the experiences of parents who have children with significant developmental disability. Background: Prevailing societal and professional assumptions of parental crisis and maladjustment in response to the 'tragedy' of having a disabled child did not accord with the authors' practice experience. Whilst parents confronted numerous difficulties, most of them appeared to manage with optimism and remarkable resourcefulness. Research design: The study, using an interpretive methodology informed by phenomenology, intensively explored the experiences of six parents of children with significant developmental disability. Findings: Although they experienced much anguish and sorrow, the parents also spoke of hope, love, strength and joy. Interpretation of the parents' experiences revealed the themes of 'joy and sorrow', 'hope and no hope' and 'defiance and despair', mediated by 'the tensions'. Conclusions: This phenomenological interpretation provides insight and understanding into the parents' experiences and has implications for practice, education and research in nursing.