Growing up with a Sibling who has a Developmental Disability: Quality of Life in the Eyes of Parents

Abstract

Living with a sibling who has a developmental disability (DD) like autism spectrum disorder (ASD),
or intellectual disability (ID) can impact the siblings in diverse ways. This study examines the quality
of life for children growing up with a sibling with DD from the perspective of parents. We interviewed
eight parents (6 mothers and 2 fathers). We explored three superordinated themes using interpretive
phenomenological analysis: the life domain of siblings,’ lifespan siblings, and parental involvement.
The findings showed that parents reported both positive and negative experiences, indicating that
having a sibling with a DD influenced siblings’ quality of life. Among these, social support and trust
in well-being are strongly linked with positive outcomes: acceptance, forbearance, mutual
understanding, experience sharing, and dealing with the outside world, reflected in mixed responses.
Age has a greater influence on the lifetime sibling theme; however, achieving a balance in parental
involvement is essential for successful results. In conclusion, having a sibling with DD can impact the
lives of siblings without DD in both positive and negative ways. The negative effects encompass
difficulties in having joint activities and mutual understanding, whereas the beneficial elements entail
heightened trust in well-being and social support. The dynamics of relationships and parental
engagement significantly contribute to improving siblings’ quality of life. Enhancing connection
dynamics and understanding the extent and nature of parental participation elevate the quality of life
for both typical and atypical children during their developmental years.