Jesse A. Bingham and Melinda Buchanan and Drs. Susanne F. Olsen and Elaine S. Sorensen, Family Science
When a family includes one or more children with special needs every family member is affected by the challenges related to that chronic disability. In the past, research has focused on the child and his or her disability as pathological, whereas today it is acknowledged that many families are able to function positively and adapt well to daily life with a child with special needs. 1
In order to assess adaptation in families with a child with a disability, researchers have most often relied on the parents’ perspective. This perspective, 2 while informative, misses a wide body of information that could be obtained from other members of the family. Siblings voices often remain unheard.
In this study we examined the daily challenges, positive aspects, stressors, coping responses, and uplifts of siblings of children with special needs. Our data were obtained directly from the siblings without parental or interviewer influence.
We employed a qualitative/descriptive design in which we generated hypotheses from the data. The overall objective of this study was to describe the coping, stressors, and uplifts of siblings of children with special needs. Our research questions asked: (a) What are the daily challenges, positive aspects, stressors, coping responses, and uplifts of siblings living with a brother/sister with special needs? (b) What themes and categories will emerge from the sibling responses that will help us understand their perspective of family life?
Participants were siblings in families who had one or more children with special needs. Special needs was defined as any chronic disability that qualifies the child for services in federally mandated educational programs. Fifty-three families were recruited using purposive sampling from three special educational programs. The 24 siblings that were involved in this study ranged in age from 7 to 15 years (mean age = 8.25 years).
Siblings completed daily semi-structured journals, consisting of five questions seeking short written statements relating to their daily experiences with their brother or sister with special needs. Siblings were asked to keep these journals for a period of two to three weeks, without the help of their parents. Data collected included 5 to 21 journal entries per child, for a total of 177 journal entries. A qualitative research method was used to analyze the date, The journals were first transcribed verbatim. Themes and categories were identified in the transcripts through content analysis. Open, axial, and selective coding were employed.
Analyses indicated that these siblings have experiences similar to children in other families. When asked what was the best thing about living with their brother or sister that day, many siblings responded with entries involving playing or watching TV. Other typical family activities were also described (e.g., “We made and ate popcorn together”).
Further analyses uncovered unique challenges to the siblings. One category that emerged dealt with the child with special needs inappropriate behaviors 1 (“… she kept on asking for cookies, from a neighbor”) and physical aggression (“when my brother almost broke my arm wrestling with me;” “he did not kick or hit me all day”). Another prevalent category that emerged dealt with the sibling’s life being interrupted by the brother or sister with special needs (“When we were shopping and they were running around so we had to leave”). Other evidence of this was seen in response to the question what was positive about living with their sibling, “He did not wake me up at 2:00 AM.”
Coping responses varied with each situation. Many siblings reported avoidance techniques to the stressor (“Went to the mall.” “I was quiet for the rest of the day.” “Nothing”). Some exhibited strong emotional responses (“I kicked him where he had surgery.” “I cryed and talked to my mommy mean”). Others took the initiative and assumed responsibility for their brother or sister (“Made them pick up their own toys.” “Made deals with them so they’d mind when I’m babysitting”). Some used others to help them cope (“I let my parents worry about it.” “Told on them”).
As stated previously, many of the siblings had very normal experiences. Yet many of the siblings experienced physically aggressive or embarrassing situations and interruptions in their own lives. One suggestion for interventionists or family life educators could be to teach children ways to handle sibling aggression. Other possible curriculum could address ways to cope with daily life interruptions.
References
- Hodapp, R.M. (1995). Parenting children with Down’s Syndrome and other types of mental retardation. In M.H. Bornstein (Ed.),
Handbook of parenting, VoL 2, Children and parenting (pp 233-253). Mahwah, NJ: Lawrence Ertbaum. - Powell, T.H., & Gallagher, P.A. (1993). Brothers & sisters: A special part Of exceptional families. Baltimore: Brookes.