Parents' perspectives on provided health care for adults with Down syndrome: A qualitative interview study

Abstract

Background: A comprehensive multidisciplinary medical guideline for adults with Down syndrome is lacking in the Netherlands. In this study, we aim to explore parents' views on multidisciplinary care and identify which aspects of health care they find most important in the context of developing such a guideline. Method: This qualitative study used semi-structured interviews. Nineteen interviews were conducted with parents of adults with Down syndrome. The main themes and subthemes were identified from the transcripts by using the framework method. Results: Four main themes were identified which should be addressed in the guideline according to the parents: parents' support in medical care, patient-centred care, important medical topics and the organisation of medical care. Conclusions: This study provides insights into parents' opinions about medical care for adults with Down syndrome. These insights are used in the construction of a guideline to improve medical care for adults with Down syndrome.