Experiences of mothers of children with Down syndrome

Abstract

Background. Down syndrome is a genetically occurring chromosomal abnormality, characterized by mild to moderate intellectual impairment, difficulties in verbal and non-verbal communication, as well as disruption in social interactions. In addition, mothers of affected children possess various emotional experiences and must have strategies to provide optimal care in the face some physical and social challenges. Objectives. The aim of this study was to describe the experiences of mothers of children with Down syndrome. Material and methods. This was a qualitative research with a phenomenological approach, and the participants consisted of 10 mothers selected through purposive sampling. In addition, the study was conducted in Binjai, Indonesia, from April to May 2018. Data collection was performed using in-depth interviews with voice recording. Content analysis was adopted using the Collaizi method, and the principle of trustworthiness was subsequently applied. Results. A total of 5 themes were recognized, including 1) having an emotional experience, 2) accepting the child's situation, 3) meeting the needs of children, 4) experiencing obstacles in caring for children and 5) expectation of the mother. Conclusions. The study, based on the experiences of mothers of children with Down syndrome, provides important information for families, health workers and the health service system to enhance understanding of the condition, as well as the appropriate handling techniques. Furthermore, it is also necessary to further investigate the experiences of positive emotions in affected mothers.