Cassandra Perry and Dr. Barbara Mandleco, Department of Nursing
In recent decades, the impact of sibling relationships on an individual have been found to be significant1 and for siblings of children with disabilities (CWDs), that impact has carried a negative tint; with struggles related to maladjustment, behavioral problems, and a stressful change in responsibilities2. I have interpreted interviews of 31 siblings of CWDs ages 2 to 17 of several different races growing up in LDS homes in UT using qualitative analysis. The interviews were conducted several years ago by students of Dr. Barbara Mandleco and consist of a series of open-ended questions. I found some common themes among the responses to questioning. The questions I analyzed deal with the feelings and advocacy aspects of the sibling/CWD relationship. Analyzing the interview responses for common themes, I found some trends in the sibling/CWD relationship, and have noted a few differences in the results according to gender and age. Below I have listed questions taken directly from the interview that yielded more interesting data, and stated the conclusions, grouping related questions. Also shown is a table with data from the analysis presented in demographic percentages.
Q3. Do you tell people how you feel about CWD?
Q6. Do you ever feel sorry for CWD?
Q8. Do you ever help other people understand what CWD needs?
Q9. Do you answer questions about CWD’s disability?
Q10. Do you come up with new ideas for how to help CWD?
Q13. Is it ever hard for you to explain what CWD needs?
Most siblings are helpful and take part in assimilating CWD to life in the family and society. In response to Question 10, 20 say they help come up with new ideas for how to help CWD opposed to 15 who do not. Those who do not are younger. All girls above age 13 and most girls above age 9 claim helpfulness. Maybe girls are especially faced with demands for help with chores and child-care as suggested by Lobato because of their natural willingness to help (Lobato, Barbour, Hall, & Miller, 1987). Of those who are helpful 45% assist with managing the CWD in daily life and 25% teach the CWD life skills. 27 responses to Question 8 suggest that the siblings help other people understand what CWD needs and 8 do not… A bit smaller of a proportion (18 yeses to 13 nos) say they answer questions about CWD’s disability in response to Question 9. The decreased proportion of siblings who specifically answer questions about the CWD’s disability versus those who say they help people understand CWD’s needs suggests that many siblings are willing and ready to be helpful, but are hesitant about the details and explanations that are involved when answering questions. Furthermore, responses to a similar question, Question 13, show specifically that many struggle explaining the needs of CWDs. 42% of the 24 who claim that it’s hard for them to explain what the CWD needs, say specifically that they don’t understand the disability or the CWD’s needs well enough. Teaching the siblings more about the disability of the CWD would likely instill more confidence in siblings and give them a greater knowledge reserve with which to explain and facilitate CWDs presence in society. If this process was easier, perhaps the siblings themselves would experience less anxiety and psychological stress from the relationship.
When asked if they ever feel sorry for CWD in Question 6, responses varied. 25 responded yes, that they do feel sorry for CWD and of those 25, 44% suggested their sympathies were because of the CWD’s condition and 28% said they feel sorry seeing the CWD’s treatment because of their behavior. 5 say they don’t feel sorry because CWD is nearly normal, and 5 say they don’t feel sorry because CWD is just different. The five Siblings of children with developmental delay or traumatic brain injury all say they feel sorry for the CWD and most explain that it’s because they often get hurt by teasing or being taken advantage of. So most siblings have an attitude of either sympathy or view CWD as a typical person and the two disabilities that most consistently elicit sympathy are developmental delay and traumatic brain injury.
In Question 3 only 44% of siblings interviewed tell people how they feel about the CWD, but 15 actually advocate for the CWD when they express their feelings. 67% of girls age 10-17 said they tell other people how they feel about the CWD. The only other demographic group which approaches this high of a ratio is the young boys who are only at 50%. While they do express themselves, it’s not necessarily in a positive manner; none of the girls in that age group advocate for the CWD. The older girls, which according to Lobato are faced with greater demands for help with chores and childcare, appear to have a less positive relationship with the CWD than other siblings (Lobato, Barbour, Hall, & Miller, 1987). In Question 9, the 10-17 year old girls again display a flip-flopped ratio of yes to no responses compared to the other demographics. 67% of older girls do not answer questions about the CWD’s disability. Maybe they’re embittered by the extra stress. Responses for Question 10 show they definitely are working hard to come up with new ways for how to help the CWD, with 100% responding that yes, they do come up with new ways opposed to the 100% of 10-17 year old boys who respond that they don’t.
This study has provided details of sibling/CWD relationships for healthcare workers to reference as they advise new parents of CWDs and has offered some evidence of the struggles especially experienced by older female siblings. The data suggests that increasing siblings knowledge and awareness of the CWD’s disability may help relieve some stress in the sibling relationship.