Perspectives of Siblings of Children with Different Disabilities/Chronic Conditions
Mandleco, Barbara L.
Olsen Roper, Susanne
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Purpose: This qualitative descriptive study investigated perceptions siblings of children with intellectual/physical disabilities/chronic conditions have about their experiences and then compared perceptions across disabilities/conditions. Methods: Participants [twenty three siblings of children with Down syndrome (11 brothers; M age = 16 years); twenty sibling of children with autism (11 brothers; M age = 12.3 years); and thirteen siblings of children with diabetes (7 brothers; M =10.7 years)] responded to open ended questions asking what was easy/difficult about living with a child with an intellectual/physical disability/chronic condition. Interviews were transcribed verbatim and analyzed according to qualitative methodology. Results: Most siblings of children with Down syndrome described positive experiences such as learning to be responsible and becoming more patient, tolerant, and compassionate. However, there were also challenges: it was frustrating, worrisome, and required the sibling assume more family responsibilities. Siblings of children with autism viewed the experience with ambiguity: challenging aspects included receiving less attention from parents, taking on extra family responsibility, and the child's bothersome behaviors. But, these siblings also said the child with autism was sweet, affectionate, and smart; time spent together was valued. On the other hand, most siblings of children with diabetes did not mention particular challenges or positive aspects of living with a child who had diabetes, and did not have a clear understanding of diabetes and its treatment. However, the siblings knew their parents were affected by the child's diabetes; many mentioned parental stresses related to the diagnosis and changes made within the family because of the diabetes. Conclusion: Nurses need to understand sibling perspectives of what is easy/difficult about living with a child who has an intellectual/physical disability/condition so interventions can be improved/individualized according to the type of disability/condition. It is also important to educate parents about the perceptions typically developing siblings have about their experiences.