Why do we need a diagnosis? A qualitative study of parents' experiences, coping and needs, when the newborn child is severely disabled

Background Communication with parents who are realizing their child is severely disabled is a difficult task for professionals. Parents are experiencing great emotional stress during the diagnostic process and dissatisfaction with disclosure is widespread. The aim of this study was to investigate parents' reactions when realizing their child's disability, the impact of the diagnosis and parents' ways of coping. Methods This was a qualitative, longitudinal study, using in-depth interviews with 16 parents of a physically and mentally disabled child who had recently been diagnosed as such. Children's age at inclusion ranged from 1 to 27 months. Half of the children had an unknown diagnosis. Data were analysed using the Grounded Theory method. Results were validated and approved by the interviewed parents. Results The certainty of the diagnosis was central for parents' experiences. First, the emotional reaction of the parents is highly influenced by the diagnostic process. Second, parents needed possibilities for taking action, and third they found difficulty in coping with an uncertain future. These three themes all related to the meaning that parents ascribed to the stating of a diagnosis. Parents' needs in relation to communication were identified as equality in co-operation with doctors, an empathic professional approach, and the child being seen with possibilities despite his or her disabilities. Conclusions Parents' process of realization was related to the diagnostic process, and information and communication should be individualized accordingly. Parents wanted to co-operate and they needed possibilities for active coping with their situation.