Siblings of children with Down Syndrome: Voices heard

Abstract

The purpose of this study was to explore the meanings of the relationship of school-age siblings of brothers or sisters with Down syndrome in order to gain a greater understanding of the lived experience from the view point of the school-age sibling. Sibling spend more time together than any other family subsystem and siblings actively shape one another’s lives and prepare each other for future experiences. With children with Down syndrome living into their 60’s, the question regarding the sibling relationship is becoming an important focus due to the possible demands on the sibling to care for the individual with Down syndrome. Therefore, it is important to understand the sibling relationship at an early stage of their lives and what the lived experience is for the sibling.

The framework for this study was developed from the author’s worldview of reciprocal interaction and epistemology of constructionism. The influences of the environment and other individuals on the sibling supported the use of the theoretical framework of Bronfenbrenner’s Bioecological System Theory. The notion that children are continually evolving holistic individuals who are developing through task achievements and, with the influences of family members, supported the use of Erikson’s psychosocial developmental theory. These two theories were combined to frame this study.

Interpretive phenomenology was used as the method of research in this study. The sample consisted of seven school-age siblings, between the ages of eight to eleven years of age, of children with Down syndrome. Data analysis involved the use of the hermeneutic circle. From the analysis emerged seven themes: always together, tolerance, intense love, responsibility for my brother or sister, things will change when child with Down syndrome gets better, no difference from other families, and impact on other relationships. Two themes provided new information about the meaning of the lived experience of being a sibling, always together and things will change when child with Down syndrome gets better.

The knowledge gained from this study will allow us to begin to hear sibling’s voices so that we can see what we need to do in the future to help with support and future research.