Stressful experiences and coping strategies of parents of young children with Down syndrome: A qualitative study

Abstract

Background: Previous studies have focused mostly on the negative experiences of parents of children with Down syndrome. We aimed to explore both the stressful experiences and coping strategies of parents from a non-Western country.Methods: Twenty-six parents of children aged 8-48 months with Down syndrome were included. Semi-structured interviews were conducted, and the data were analysed using thematic analysis. Results:The main themes of the stressful experiences were emotional burdens, caregiving burdens, struggle against stigma and discrimination, concerns about the future, challenges related to health, education, and financial issues. Parents used a variety of coping strategies to overcome the challenges by seeking support and help, searching for information, accepting and adapting, and adopting optimistic attitudes. Conclusion:Although being a parent of a child with Down syndrome has many challenges, most parents effectively used coping strategies and adapted their lives to their new parental roles in their child's early years.children with Down syndrome, coping skills, parental adaptation, stressful experiences | BACKGROUNDHaving a child with Down syndrome can be a stressful journey for most families, beginning with the child's diagnosis (Gupta, 2007;Nelson Goff et al., 2013;Oelofsen & Richardson, 2006). Children with Down syndrome have varying degrees of developmental and behavioural difficulties. Many children also suffer from a wide range of health problems, such as congenital heart disease, gastrointestinal malformations, and respiratory infections. Their greater need for supervision and increased health and education demands can have a profound impact on the functioning and well-being of the family (Nelson Goff et al., 2013;Oelofsen & Richardson, 2006;Skotko et al., 2011). Families with children with Down syndrome report higher levels of stress, greater difficulties with adjustment, and poorer coping compared to families of healthy children (Hodapp et al., 2001;