Parents’ experience of receiving their child’s diagnosis of Down’s syndrome

Abstract

Objectives: The objectives of the study were to study the parents’ satisfaction with the experience of receiving the diagnosis of Down’s syndrome (DS) for their child. Materials and Methods: Children studying in special schools in the city with DS were identified and a retrospective study of their parents’ experience on receiving their child’s diagnosis was done using a semi-structured, questionnaire, developed, and validated by us. Results: Forty-two parents participated. In 7 (16.6%), diagnosis was made in the neonatal period, in 15 (35.7%) between 1 month and 1 year, and in 20 (47.6%) after the 1st year of life. Forty (95.2%) had been given printed information, 32 (76.2%) were provided with contacts numbers of resource centers. Thirty-eight (90.5%) were referred to support groups. Only 9 (21.4%) were provided a timetable of care. Twenty (47.6%) felt that all the positive aspects had been clarified, 15 (35%) felt that all the negative aspects were completely explained, and 29 (69%) felt that the doctor had shown compassion. Overall satisfaction 9.5% were very satisfied with the experience, 45.2% were quite satisfied,11.9% were neutral, 19.1% were quite dissatisfied, and 14.3% were very dissatisfied. The factors significantly associated with satisfaction included having a time table of care, having both positive and negative aspects completely explained and the health-care professional showing compassion at the time of breaking the diagnosis. Conclusion: Only 54.8% of parents of children with DS were satisfied with the way the diagnosis of their child’s condition was broken to them. Efforts to include the factors associated with satisfaction and avoidance of factors causing dissatisfaction will help improve the experience of these parents.