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

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.

A Comparative Analysis of Adult Siblings' Perceptions Toward Caregiving

“…Still further, only ''current'' caregivers were legal guardians of their brothers and sisters. A similar method has previously been used to classify varying levels of caregiving (Burke et al, 2012).…”

“…In addition, Burke, Taylor, Urbano, and Hodapp (2012) identified characteristics that predicted adult sibling expectations for caregiving in their national survey of 757 adult siblings. Siblings who expected to be caregivers had parents who were currently providing excellent care to the family member with IDD.…”

“…Unfortunately, most extant research about sibling caregiving equates anticipating and current caregiving siblings (Burke et al, 2012;Greenberg, Seltzer, Orsmond, & Krauss, 1999;Krauss et al, 1996). In one sense, treating anticipating and current caregiving siblings interchangeably is not problematic because both anticipated and current caregivers most likely are involved siblings.…”

Introduction to the special issue: Family Support of Persons with Disabilities Across the Life Course

“…For example, siblings play important roles in the lives of many individuals with disabilities across the life span and frequently assume greater family caregiving roles when aging parents pass away or are no longer able to provide supports (Arnold, Heller, & Kramer, 2012;Heller & Arnold, 2010;Heller & Kramer, 2009). Recent research has addressed expectations for future caregiving for siblings of adults with IDDs, highlighting the relationship between anticipated caregiving and current parental caregiving and sibling closeness (Burke, Taylor, Urbano, & Hodapp, 2012). However, in general, the perspectives and needs of siblings have been often overlooked and siblings have rarely been included in interventions.…”

Perceptions des frères et des soeurs adultes d’une personne présentant une déficience intellectuelle sur leurs relations mutuelles dans la famille, leurs projets de vie et le soutien souhaité

“…Toutefois, Taylor, Greenberg, Seltzer et Floyd (2008) soulignent que ces relations s'établissent surtout lorsque la fratrie apporte une aide fonctionnelle (exemples : soutien financier, préparation des repas, transport) à la personne ayant une DI. Plusieurs auteurs notent que les soeurs s'impliquent généralement plus que les frères (Burke, Taylor, Urbano et Hodapp, 2012;Coniglio et Meldrum, 2011;Krauss, Seltzer, Gordon et Friedman, 1996;Orsmond et Seltzer, 2000). À partir d'une étude par entrevue auprès de 12 soeurs de femmes ayant une déficience intellectuelle, Wilson (2011) note que les projets de vie de ces soeurs sont influencés par la perspective des responsabilités futures.…”