"Predictors of Future Caregiving by Adult Siblings of Individuals With Intellectual and Developmental Disabilities"

Meghan M. Burke

Vanderbilt University

Julie Lounds Taylor

Vanderbilt Kennedy Center, Vanderbilt University; and Vanderbilt University School of Medicine and the Monroe Carell Jr. Children's Hospital at Vanderbilt University

Richard Urbano

Vanderbilt Kennedy Center, Vanderbilt University

Robert M. Hodapp

Vanderbilt Kennedy Center, Vanderbilt University; and Peabody College, Vanderbilt University

Abstract

With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.

Editor-in-Charge: Richard Hastings

We thank Mike Coburn, Sue Swenson, Elise McMillan, and the Board of Directors of The Arc for promoting this study. The members of the National Sibling Research Consortium were particularly helpful in designing this questionnaire; a special thank you goes to Marsha Mailick Seltzer, Gael Orsmond, Laraine Glidden, Carolyn Graff, Ann Kaiser, Ruth Roberts, and Elisabeth Dykens. This study was supported by a grant from The Arc as well as the Eunice Kennedy Shriver National Institute of Child Health and Human Development (Grant P30 HD15052). The views expressed are solely the responsibility of the authors and do not necessarily represent the official views of any of the funding agencies.

Correspondence regarding this article should be sent to Meghan M Burke, Vanderbilt University, Vanderbilt Kennedy Center and Department of Special Education, Nashville, TN 37203, Email: meghan.m.burke@vanderbilt.edu

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