Allison Ash Malnar and Dr. Barbara Mandleco, Nursing
Approximately 350,000 families in the United States are affected by Down syndrome, and the vast majority of these families include one or more nondisabled children (National Down Syndrome Society, 1999). Because of this, many researchers are interested in how this disability affects the family. Marsha Van Riper (1999) writes, “…While the birth of a child with Down syndrome involves a ‘change of plans’ for families, it does not have to be a negative experience. In fact for many families, it is a positive, growth producing experience” (p. 3). While much research in the past concerned interviewing parents of children with Down syndrome, current research is beginning to turn to siblings of children with Down syndrome to try and understand how the disability effects them. “It would be unrealistic, given the importance of the sibling relationship, to presume that having a disabled sibling would not exert a profound effect on the psychological well-being of other siblings in the family” (Wolf, Fisman, Ellison, & Freeman, 1998, p. 1317).
This interdisciplinary research project seeks to better understand the stressors and coping methods of brothers and sisters of children with Down syndrome. More specifically, this project examined the data collected by an ongoing interdisciplinary research team at Brigham Young University, involved in exploring familial adaptation to raising a child with a disability. The emphasis here is on previously collected data collected from guided interviews of the well siblings of children with Down syndrome.
Using data previously gathered through guided interviews with siblings of children with Down syndrome, this project explored (a) the children’s feelings of having a sibling with Down syndrome, (b) the children’s feelings about helping and advocating for their sibling with Down syndrome, (c) how children spend time with their sibling with Down syndrome, and (d) children’s knowledge and understanding of the sibling’s disability (Down syndrome).
I began my research by conducting a series of literature reviews on families of children with Down syndrome. This helped to familiarize myself with different themes emerging in recent research and to compare with themes that emerged as I explored data gathered from the interview sessions of siblings of children with Down syndrome. The implementation of the research data began by grouping all participants’ answers to a specific question together. By arranging all the participants’ answers together, it allowed for common themes to emerge. As the themes emerged, the answers were grouped together according to themes. Themes were reorganized on several occasions and verified through a series of meetings with other researchers on the project. Operational definitions for the different themes were also developed in the process.
Because of the qualitative nature of this research project, and the age group of the participants (7 to 14 years of age), some of the difficulties experienced were in deciphering valid and invalid responses to questions asked. Some participants showed tendencies to wonder off the subject or not answer the specific question. Another difficulty encountered was lack of willingness by the children interviewed to share some of their feelings with the interviewers. This limited the ability of themes to emerge with some questions.
The most enjoyable aspect of the project also deals with the qualitative nature of the project and the age group of the participants. Glimpsing a part of someone’s life is a special privilege, especially when their experiences include unique circumstances. I learned about strength of character as one child responded that he shows people he is proud of his sibling with Down syndrome, “Because I want to make it known that he can do things…because some people think that if they have Down syndrome they just can’t do things…” Another child taught the principle of loyalty as she stated that she shows other people she is proud of her brother with Down syndrome, “To show them that I love him and it doesn’t matter what he looks like or what he does.” Another sibling expressed her deepest concerns about her sister with Down syndrome in response to the question, “What have you and your parents talked about?” She stated, “How life is going to be rough for her.”
The goal of this project is to validate the importance of gathering data directly from siblings of children with Down syndrome in order to better understand a sibling’s perspective and developing interventions to promote healthy development in siblings of children with disabilities. By understanding common themes among siblings of children with siblings with Down syndrome, it is hoped the goal will be recognized.
Overall, I enjoyed working with data collected from children. It amazed and inspired me to read responses to very difficult questions and view the children’s innermost feelings concerning their sibling with Down syndrome. I hope to use findings from this project to guide future research projects.