The psychological burden on families with children with Down syndrome is well known (6), but no Nordic studies have yet investigated the parents' user satisfaction with the healthcare services. Well over one-half of the parents reported to be satisfied with the follow-up of their children by the primary and specialist healthcare services, but the study did reveal some potential for improvement.
Persons with intellectual disability have a preponderance of secondary diagnoses. In line with previous studies, the parents in our study felt it burdensome to have to take responsibility for check-ups themselves (3, 4). Eighteen per cent of the parents reported to have experienced 'treatment failure', most frequently in the specialist healthcare service. It is important for all healthcare professionals that follow up persons with Down syndrome to have knowledge about the follow-up of potentially serious secondary diagnoses (7).
The parents were least satisfied with the follow-up of issues related to sleep, behaviour/psychiatry and puberty. Such issues arise in somewhat older children with Down syndrome, and the appropriate healthcare providers to attend to these issues are less clearly defined. This may be a source of more uncertainty and less satisfaction among parents, and points to a need for more competence among health care providers about behavioural and mental problems in persons with intellectual disability (8).
The primary healthcare service has a key role in the follow-up of persons with Down syndrome. Our study indicates that parents appreciate good local follow-up. It was surprising to learn that some parents had never heard about the child habilitation service or had problems in establishing contact with the service, which is responsible for coordination of service provision and ensuring that there is regular follow-up (1, 8).
Many commented that when they received information about Down syndrome in the maternity ward, it was in a very demanding situation. This is known also from previous studies (9). Good recommendations are available regarding how healthcare professionals should communicate information about genetic disorders such as Down syndrome (10).
This study has some limitations. We do not know how many parents of children with Down syndrome are members of the Facebook group. We received responses from more than 160, but we are uncertain as to whether this sample is representative. Thus, there is a risk of selection bias. The secondary diagnoses were not specified in detail, and some questions may have been interpreted in different ways. However, the prevalence of heart defects, epilepsy and endocrine issues was in line with what is reported for patients with Down syndrome (11). In the youngest children in the study, behavioural and mental problems may not yet have arisen or been diagnosed. More than 90 % of those who responded to the survey were mothers, and the answers might have been different if more fathers had responded.