Knowledge, Attitudes and Beliefs of Caretakers of Children with Down Syndrome

Abstract

Background: Down syndrome is the commonest cause of intellectual impairment but many of the parents and caretakers are not fully aware of the strengths and challenges involved in bringing up a child with this condition. Misconceptions about their ability to live in an inclusive society is very high and hence this study was conducted to have an insight about their knowledge attitude and beliefs. Aim: To study the personal and social impact in the families of persons with Down syndrome. Method: A questionnaire with 28 questions was given to parents/caretakers who attended a meeting for parents of persons with Down syndrome and their reponses were analyzed. Results: The group had a fairly good knowledge of the condition when compared to others as seen from some similar studies. But late counseling and lack of awareness of the various therapies resulted in delayed start of early interventional programmes. The majority still preferred to send their child to a special school but a large number opted for education in a normal school. The society was over sympathetic and over inquisitive and some were harsh to the mothers. The mothers usually responded patiently to the questions by others but made them cry at times. The fact that they can be trained is well understood but there were only few who were actually working. The other aspects are detailed in the discussion. Conclusions: Most families adjusted well to a child with Down syndrome and received good support from spouses and siblings. But improving early diagnosis, counseling and initiating therapies have to be strengthened. The need to help them to get a good vocational training and thereafter a suitable job can go a long way in helping them lead as normal a life as possible.