Megan Cannavina, Heather Z. Lyons, Ph.D., Rachel L. Grover, Ph.D., Penny Hauser-Cram, Ph.D.

Relationship Quality and Caregiving Expectations for Siblings of Individuals with Developmental Disorders

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Abstract

            While siblings of individuals with developmental disabilities (DD) vary in the extent to which they expect to provide future caregiving, the majority expects some level of responsibility (Greenberg, Seltzer, Orsmond & Krauss, 2014).  A review of the literature indicates that factors such as sibling relationship quality, level of concern about the individual with DD's future, and amount of open discussion may be associated with expectations (Cannarella, 2012).  While previous studies (Hall & Rosetti, 2017) have examined relationship quality as a predictor of future caregiving responsibility, this dissertation assesses for changes within the same sibling relationship over a span of approximately five years.

            Data were drawn from the Early Intervention Collaborative Study (EICS), a longitudinal investigation of children with DD and their families that extended from infancy to young adulthood. Data were collected from siblings when the individuals with DD were 15, 18, and 23 years of age.  Quantitative analyses were conducted to examine total scores from the Positive Affect Index (Bengtson & Black, 1973), a measure of relationship quality; as well as Likert-type scales regarding sibling caregiving expectations (e.g., anticipating provision of instrumental care such as legal guardianship), sibling concerns, and amount of discussion about the individual with DD’s future with caregivers.

            Quantitative analysis revealed no significant changes in relationship quality or caregiving expectations over time. Consistent with the hypothesis that higher levels of sibling relationship quality are predictive of caregiving expectations at the same timepoint, a multiple regression model revealed that when controlling for the individual with DD’s adaptive functioning, greater relationship quality is significantly predictive of more sibling caregiving expectations at Age 23, F(2, 30) = 21.93, p < .001, adj. R² = .56, sr² = .02.  Results indicated marginal significant at T18, F(2, 75) = 58.51, p = .051, adj. R² = .60, sr² = .01.  For each, it appears that relationship quality predicts only a small proportion of change in caregiving expectations compared with adaptive functioning.  Contrary to the hypothesis that lower levels of sibling concern would be predicted by more frequent conversations with parents, a multiple regression model at Age 18 significantly predicted higher sibling level of concern from more frequent discussions at T18, F(2, 75) = 4.78, p = .01, adj. R² = .09; results were not significant at Age 23.  This study’s qualitative content analysis of responses to the question, “What worries do you have about your brother or sister’s future?” at Age 23 were compared with Cannarella (2012)’s findings from the same data set at Age 18.  Results indicate the most frequent concern shifted from the individual with DD’s ability to be independent, to uncertainty amid future caregiving changes.  There was less concern than at Age 18 regarding society (e.g., discrimination against the individual with DD), and more concern about the abilities (adaptive skills and intellectual functioning) of the individual with DD.  Overall, results underscore the importance of sibling relationship quality on caregiving expectations, and are a first step toward examining how each progress over time.

References

Cannarella, A.M. (2012). Sibling Relationship Quality and Future Planning among Siblings of Adolescents with Developmental Disabilities: A Mixed Methods Approach (Doctoral dissertation).  Retrieved from Boston College eScholarship.  Boston College, Massachusetts.

Greenberg, J.S., Seltzer, M.M., Orsmond, G.I., & Krauss, M.W. (1999). Siblings of adults with mental illness or mental retardation: Current involvement and expectation of future caregiving. Psychiatric Services, 50, 1214-1219. doi: 10.1176/ps.50.9.1214

Hall, S. A., & Rossetti, Z. (2017). The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 30, 1-12.  doi: 10.1111/j.1365-2788.2007.00954.x