Parental perspective in children with Down syndrome from a tertiary care center of foothills Himalayan region of India.

Abstract

Down syndrome (DS) is a genetic condition caused by the presence of an extra chromosome 21, resulting in developmental delays and intellectual disabilities. In northern India, like in many other parts of the world, parents of children with DS face unique challenges and opportunities. Therefore, it is essential to understand the parental perspective to gain insight into the experiences and needs of families in northern India. A descriptive cross-sectional study was conducted among 51 parents attending the Pediatric OPD and IPD at All India Institute of Medical Sciences, Rishikesh, Uttarakhand. The sample was selected using enumerative sampling methods. Data were collected from May 1, 2021 to October 1, 2022 using an interview schedule. The study revealed that 41.2% of respondents had low knowledge; 31.5% and 27.5% had average knowledge and good knowledge, respectively. In addition, there is a statistically significant association between respondents' knowledge about DS and educational status (<i>P</i> = 0.01). Based on the study findings, it can be concluded that parents had significantly low awareness regarding DS. This highlights the need for increased awareness and education about DS in the region. Hence, there is a need for providing accessible and accurate information about DS to individuals across different educational backgrounds.