Listening to the voices of mothers in Indonesia: Qualitative content analysis of experiences in parenting children with down syndrome.

ABSTRACT

INTRODUCTION: Generally, mothers provide the majority of caring for children who have Down syndrome. They pose challenges not only with regard to the acceptability of the child situation but also with regard to the provision of care for children with DS. AIM: To explore the experiences of mothers parenting children with DS in Indonesia, to give a better understanding of their needs, which is necessary for the delivery of treatment. METHODS: A descriptive qualitative research with content analysis was used. Study participants (15 mothers) were purposively sampled from attendees of a State Special School for students with disabilities. Data was collected via semi-structure interviews and were audio recorded. Participant's statements underwent content analysis, and the principle of trustworthiness was subsequently applied. RESULTS: Five main themes describing participants' experiences were identified (1) parenting experiences - the impacts, (2) special needs, (3) parenting barriers, (4) parenting facilitators, and (5) mothers' expectations. CONCLUSIONS: The study findings showed that the mothers viewed their situation in both positive and negative ways. Despite the limited sample size in this exploratory study, the results offer new insights into raising a child with DS in a particular cultural setting. IMPLICATIONS FOR PRACTICE This study offers important information to families and healthcare providers to improve awareness of the disorder and its appropriate management methods. It is important that an exploration of the experiences of mothers will provide healthcare professionals and families with an understanding of the situation. This understanding is essential for the effective management and delivery of treatment.