Date of Completion

12-12-2013

Embargo Period

6-9-2014

Keywords

Sibling support providers, caregiving, individuals with intellectual and developmental disabilities, depression, appraisal of caregiving, empowerment

Major Advisor

Dr. Anne F. Farrell

Associate Advisor

Dr. Edna Brown

Associate Advisor

Dr. Kari Adamsons

Field of Study

Human Development and Family Studies

Degree

Doctor of Philosophy

Open Access

Open Access

Abstract

Today, 72% of individuals with intellectual and developmental disabilities (IDDs) in the United States live with a caregiver (Braddock & Rizzolo, 2013). In many families, siblings of individuals with IDDs are the default long-term care providers (Heller et al., 2008). Despite the fact that research has begun to recognize and explore the roles of family members in care, little is known about sibling support providers (SSPs). Exploration and confirmation of the caregiving processes and outcomes of siblings can have implications for policy, research, and practice. The purpose of this study was to examine a conceptual model of caregiving processes and outcomes for siblings of individuals with IDDs. Specifically, perceived social support, demand, appraisal of caregiving, depression, and empowerment were measured among 327 sibling caregivers recruited through disability organizations and social networking sites to complete a web-based survey. Most participants (35.7%) were 18-25 years old, female (85.4%) and White (83%). More than half (54%) lived within 10 miles of their siblings’ residence. The mean age of brother/sister with IDD was 32 years and 94.1% had co-occurring disabilities. A substantial number of individuals with IDDs (16.6%) did not engage in regular work or related daily activities. Few (2.4-9%) were fully independent on daily routine tasks. The conceptual model consisted of five variables: Demand, perceived social support, appraisal of caregiving, depression, and empowerment. Demand consisted of the employment status of SSPs, functional abilities of the individual with IDDs, and the weekly duration of caregiving provided. Other measures used were the Multidimensional Scale of Perceived Social Support (measured perceived social support; Zimet, Dahlem, Zimet, & Farley, 1988), the Appraisal of Caregiving Scale-Revised (measured appraisal of caregiving; Lawton, Moss, Hoffmann, & Perkinson, 2000), the Center for Epidemiologic Studies Depression Scale (measured depressive symptoms; Radloff, 1977) and Caregiver Empowerment Scale (measured empowerment; Degeneffe et al., 2011). The initial model did not converge and was revised. In the revised model, demand consisted of the summated scores of functional abilities of the individual with IDDs, and the weekly duration of caregiving provided. Employment status of SSPs formed the sixth variable in the model. The analysis of the revised model suggested marginally good model fit [χ2 = 12.2, df= 6, p = .057; RMSEA =.057] and significant associations between perceived social support, appraisal of caregiving, depression, and empowerment. SSP’s employment duration and demand did not significantly impact SSPs appraisal of caregiving. Tests of mediation (Sobel test) revealed appraisal of caregiving mediated perceived social support and depression and perceived social support and empowerment. The mediation findings hints at how sibling caregivers appraise caregiving (meaning they make) is an important factor in determining their depression scores and sense of empowerment.

Download

Share

COinS