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


METHODS
The study, using an interpretive methodology informed by phenomenology, intensively explored the experiences of six parents of children with significant developmental disability.


RESULTS
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.
Kearney
P M
PM
Senior Lecturer, School of Nursing, Family and Community Health, University of Western Sydney, New South Wales, Australia. p.kearney@uws.edu.au
Griffin
T
T
D000223:Adaptation, Psychological; D000328:Adult; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D003717:Denial, Psychological; D002658:Developmental Disabilities / Q000523:psychology*; D005260:Female; D006117:Grief; D006801:Humans; D008149:Love; D008297:Male; D016294:Models, Nursing; D008960:Models, Psychological; D009013:Morale; D015404:Nursing Methodology Research; D010290:Parents / Q000523:psychology*; D011379:Prognosis; D011795:Surveys and Questionnaires