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

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 qualityof life for children growing up with a sibling with DD from the perspective of parents. We interviewedeight parents (6 mothers and 2 fathers). We explored three superordinated themes using interpretivephenomenological analysis: the life domain of siblings,’ lifespan siblings, and parental involvement.The findings showed that parents reported both positive and negative experiences, indicating thathaving a sibling with a DD influenced siblings’ quality of life. Among these, social support and trustin well-being are strongly linked with positive outcomes: acceptance, forbearance, mutualunderstanding, 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 parentalinvolvement is essential for successful results. In conclusion, having a sibling with DD can impact thelives of siblings without DD in both positive and negative ways. The negative effects encompassdifficulties in having joint activities and mutual understanding, whereas the beneficial elements entailheightened trust in well-being and social support. The dynamics of relationships and parentalengagement significantly contribute to improving siblings’ quality of life. Enhancing connectiondynamics and understanding the extent and nature of parental participation elevate the quality of lifefor both typical and atypical children during their developmental years.