Holly Willardson and Dr. Barbara Mandleco, College of Nursing
Between 5-31% of children in the United States will experience a chronic condition in their lifetime, a number which can only be expected to climb with the advances of medical technology that allow these children to live longer. Because of this rise in US children with chronic conditions or disabilities, research has examined the effects the condition has on the family unit. In the past, many studies on families raising children with disabilities/chronic conditions have drawn data from parents (mostly mothers), teachers, and clinicians, but little research has been gathered from the perspective of the sibling.
In addition to the lack of sufficient data on how childhood chronic disability affects siblings, there is also controversial data on what the effect is on siblings. For example, one study concluded that the effects of having a sibling with a chronic disability are mainly positive, including increased spirituality and opportunities for maturation. However, another study on siblings of children with a chronic disability concluded that only 5% of siblings felt well-supported by their parents, and these students often misbehaved outside the home or became introverted and expressed loneliness. This combination of insufficient and controversial data requires further research in order to fully understand the experiences of siblings of children with chronic conditions or disabilities.
As a part of an ongoing project that Barbara Mandleco is conducting in BYU’s College of Nursing, I selected fifteen siblings from nine different families to interview as a part of my research. Between the nine families, there were ten children with disabilities that include ADHD, autism, blindness, deafness, speech impariments, developmental delays, and traumatic brain injury. The ages of the children with disabilities ranged from 3-16 and the ages of the fifteen siblings I interviewed ranged from 7-18. To analyze the data from the interviews, I split the siblings into a younger category (ages 7-11) and an older category (ages 12-18). The questions asked the siblings during the interview include the following:
Tell me what it was like growing up with_____(name of child with disability).
What was difficult about the experience?
What was easy about the experience?
If you could change anything about growing up with______(name of child with disability), what would it be?
Tell me how your family members learned about_______(the kind of disability the child has)?
6. Tell me about anything else you would like to talk about.
After analysis of this data according to qualitative methodology, ceratin patterns emerged that may be of significance to what the lived experience is like for a sibling of a child with a chronic disability or illness. While some perceived their experience more positively and others more negatively, half of the children were able to identify positive aspects of their experience that included their interaction with their sibling and the growth they have experienced by living with their sibling. However, most of the children were also able to identify negative aspects of their experience that included their sibling’s pain, disturbing behaviors, and the negative effects that the experience has had on their family function and interaction.
Perhaps the most notable pattern that emerged with the data is the difference of responses between the two age categories. The older siblings were more likely to internalize their experience and analyze how their experience has been a positive influence in their lives. While the younger siblings also identified positive aspects of their experience, they were usually linked to playing and interacting with their sibling. This noticed difference suggests that a child’s age and maturity has an effect on how a child perceives the experience of having a sibling with a disability.
Another pattern noted between the age categories was in response to the question, “What would you change about (sibling with disability)? It was three older children who replied that they would not change anything about their sibling, while six younger children expressed a desire to change their sibling’s disturbing behaviors. However, there were both younger and older siblings (six all together) who said they wished they could change their sibling’s condition or situation. This suggests that while some of the older siblings did not want circumstances to change, age is not the only actor determining how these children perceive their experience. Three of the six children who said they would want to change their sibling’s condition/situation have siblings who had been healthy before getting into serious accidents that left them disabled. Therefore, these children have a recollection of life with their sibling that is much different than their current situation. This suggests that a child’s particular disability may affect the way a sibling perceives the experience of living with that child.
Though several patterns were noticed as this data was analyzed, there are limitations to this study that merit further, more expensive research. The sample size of fifteen children is small and there is a wide variety in the disabilities that the children have. Clearer patterns and more conclusive data could be obtained in the future with a larger sample size that allows for categorizing results into types of child disabilities. However, the results of this research do give a good glimpse into the lived experience of a child who has a sibling with a disability.
The results of this research have been submitted and accepted to be presented at the Utah Conference on Undergraduate Research in February 2007 and the “To the Power of 2: Mentored Learning Symposium” at BYU in March 2007. Through these conferences, I hope to raise more awareness of this issue and to inspire further research to be conducted that will develop a better understanding of what it is like for children to grow up with a sibling who has a disability.