PERCEPTIONS: SIBLINGS OF YOUTH WITH DISABILITIES/CHRONIC CONDITIONS
Background: Research examining siblings living with a CWD from the sibling’s perspectives is limited; most research examining these siblings uses parents and or teachers as informants instead of siblings themselves. In addition, most studies yield conflicting results. Some studies suggest these siblings are affected negatively and tend to have more problems at home, school, and with friends; whereas other research suggests these siblings seem to cope better with family stress and demonstrate increased maturation, sensitivity, and empathy. Indeed, it is critical to obtain additional research about these siblings, especially from their own perspectives.
Method: 15 siblings (8 sisters; 7 brothers; mean age: 11.2; SD: 2.66; range 7-18) from nine families living in the western United States participated in audio recorded semi structured interviews discussing experiences living with a CWD (mean age: 9.51; SD: 4.27; range 3-16). Nine siblings were younger; six were older than the CWD. Three CWD had disabilities/chronic conditions affecting speech and hearing; seven had disabilities/chronic conditions affecting behavior (traumatic brain injury, ADHD, autism, blindness, developmental delay). IRB approved questions included what it was like living with the CWD; what was difficult/easy about the experience; what would you change about the situation; how did you learn about the disabilities/chronic condition; anything else you would like to talk about. Interviews were transcribed verbatim and analyzed using appropriate qualitative methods. Direct quotations representing the themes and subthemes were identified through selective coding.
Results: Some siblings perceived their experience more positively whereas others perceived the experience more negatively. However, half identified both positive and negative aspects of the experience: “kind of hard and at the same time kind of fun”. Positive aspects included interactions with the CWD and personal growth experienced by living with the CWD (“very exciting....we’re always learning how to sign and help him”). Negative aspects included pain the CWD endured, disturbing/upsetting behaviors, and the effect the experience had on family interactions/functions (“always starts to yell and it embarrasses me”). Older siblings viewed the experience as having a positive influence in their lives (“this has helped me to develop into the person I am today”), and did not want to change anything about their sibling. Younger siblings discussed current interactions and wanted to change the CWD’s disturbing/upsetting behaviors. Interestingly, three of the six siblings who wanted to change the CWD’s condition/situation noted the CWD were typically developing before being injured in serious accidents; suggesting they remembered what the CWD was like before becoming disabled. Siblings learned about the CWD’s condition from parents/physicians or from observing/interacting with the CWD.
Implications: Many siblings spoke of both positive and negative experiences living with a CWD; younger siblings focused on current behaviors while older siblings focused on how the experience influenced them positively, and did not want to change the situation. Therefore, practitioners should be aware of siblings’ experiences and make sure they are afforded time and attention needed to positively cope with living with a CWD.