Sibling Caregivers of People With Intellectual and Developmental Disabilities: Sociodemographic Characteristics and Material Hardship Prevalence

Abstract

In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed.

Correlates of current caregiving among siblings of adults with intellectual and developmental disabilities

“…Specifically, female (vs. male) siblings are more likely to fulfil caregiving roles (Burke et al, 2012;Greenberg et al, 1999;Sonik, Parish, & Rosenthal, 2016). Namely, gender has often been reported as a predictor of sibling caregiving.…”

“…However, in comparison with a national sample of sibling caregivers (Sonik et al, 2016), this sample was representative with the exception of gender and some racial backgrounds. First, the sample was primarily White and female.…”

“…Indeed, Sonik et al (2016) reported that, among working-age adults, African American (vs. White) siblings were more likely to provide caregiving to their brothers or sisters with IDD. Given that our regression model of current sibling caregiving only explained 20.8% of the variance, other correlates of sibling caregiving exist.…”

“…Namely, gender has often been reported as a predictor of sibling caregiving. Specifically, female (vs. male) siblings are more likely to fulfil caregiving roles (Burke et al, 2012;Greenberg et al, 1999;Sonik, Parish, & Rosenthal, 2016).…”

“…Given previous research, the authors hypothesized that siblings who were female (Burke et al, 2012;Sonik et al, 2016) and had positive sibling relationships (Burke et al, 2012;Cuskelly, 2016) would report greater caregiving. The authors also hypothesized positive correlations among advocacy, future planning and caregiving (Burke, Arnold, et al, 2015;Heller & Kramer, 2009).…”