Parents of children with Down syndrome and their experiences with the healthcare services

Abstract

Background: Children and adolescents with Down syndrome have a comprehensive need for follow-up in the primary and specialist healthcare services.

Material and method: In June 2019, we published a questionnaire on the Facebook group of the Norwegian Network for Down syndrome. The purpose was to investigate user experiences among parents of children and adolescents with Down syndrome in the age group 0-20 years, in their encounter with the healthcare services.

Results: We received 174 responses. Those most satisfied were parents of children who received follow-up for secondary diagnoses such as vision problems, heart defects and endocrine disorders. Those least satisfied were parents of children with problems associated with behaviour, sleep and puberty. Approximately 6 out of 10 parents reported no negative experiences in their encounter with the healthcare services, but 29/161 (18 %) reported that the diagnosis of Down syndrome had contributed to treatment failure by the paediatrician or in the child rehabilitation service.

Interpretation: The study indicates a need for improved follow-up of children and adolescents with Down syndrome, both in the primary and specialist healthcare services.