Probing the feelings of parents, family and society to people with Down syndrome: Observational study

The paper presents the results of a qualitative observational study mapping the emotional responses of a focus group of 8 persons with children with Down Syndrome. The respondents also completed a semi-structured questionnaire. The children of the focus group all belong to the DS daycare centre of the city of Cuenca, Ecuador. The group interview and questionnaire addressed respectively the crossculturally stigma and discrimination versus persons with DS, the parent’s feelings, the impact on the whole family, and the communication with the health care sector. The study revealed that in Cuenca city the negative attitude regarding DS persons still persists. Additionally, the survey shed light on the responses and adaption of parents and families. Last but not least it is recognized that improved communication with health care personnel, knowledgeable of the emotional attitude of parents and family functioning, will be beneficial for the acceptance and care-taking of DS persons. Findings leads to the necessity of developing counseling programs for children with DS and their families, and underscores the vital need to increase community awareness and social support.