Parents’ attitudes and experiences related to speech and language therapy among Sinhala-speaking children with down syndrome attending the Ayati Center for children with disabilities.

Abstract

BACKGROUND: Down syndrome is the most common genetic disorder associated with speech and language delay. From the time a child with Down syndrome is born, parents struggle to develop their child's speech as it is one of the most important components that need to be developed in this population. OBJECTIVE/S: This study aims to describe parents’ attitudes and experiences regarding speech and language therapy for their Sinhala-speaking child with Downs Syndrome attending the Ayati Centre. METHODS: This study included fifteen parents of Sinhala-speaking children with Down syndrome between birth to 5 years of age attending Speech and language therapy clinics at the Ayati Centre. Data was collected through 30–45-minute face-to-face semi structured interviews with each parent. The interviews were coded, categorised and key themes were identified. Initially, the data was transcribed into Sinhala. The narratives were analysed in order to understand the parental attitudes and experiences on the topic. RESULTS: According to the analysis, 12 content codes were identified and the following four main themes emerged; parental commitment to improving speech, the disappointment of being a parent with a child with disability, parents moving forward despite challenges, influence of family towards speech development (both positive and negative). CONCLUSION/S: Parents face many challenges when dealing with their children with Down Syndrome, especially due to the speech delay. All parents are keen to improve their child’s speech abilities and pay special attention to achieving it. Social stigma is an important issue that affects parents. Immediate and extended family support can be crucial for parents when dealing with challenges associated with speech development among babies with Down Syndrome.