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

2012 ◽  
Vol 117 (1) ◽  
pp. 33-47 ◽  
Author(s):  
Meghan M Burke ◽  
Julie Lounds Taylor ◽  
Richard Urbano ◽  
Robert M Hodapp
Keyword(s):  
Developmental Disabilities ◽  
Life Expectancy ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
Caregiving Roles ◽  
Caregiving Responsibility

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.

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

2016 ◽  
Vol 54 (5) ◽  
pp. 332-341 ◽  
Author(s):  
Rajan A. Sonik ◽  
Susan L. Parish ◽  
Eliana S. Rosenthal
Keyword(s):  
Developmental Disabilities ◽  
Adult Population ◽  
Social Characteristics ◽  
Service Needs ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
Material Hardship ◽  
Working Age ◽  
Nationally Representative ◽  
Sibling Caregivers

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.

Family Caregivers of Adults With Intellectual and Developmental Disabilities: Outcomes Associated With U.S. Services and Supports

2014 ◽  
Vol 52 (2) ◽  
pp. 147-159 ◽  
Author(s):  
Heather J. Williamson ◽  
Elizabeth A. Perkins
Keyword(s):  
Developmental Disabilities ◽  
Family Caregivers ◽  
Service System ◽  
Care Delivery ◽  
Intellectual And Developmental Disabilities ◽  
Physical Health Outcomes ◽  
Services And Supports ◽  
Caregiving Roles ◽  
Mental And Physical Health ◽  
The U.S

Abstract Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services.

A Comparative Analysis of Adult Siblings' Perceptions Toward Caregiving

2015 ◽  
Vol 53 (2) ◽  
pp. 143-157 ◽  
Author(s):  
Meghan M. Burke ◽  
Thomas Fish ◽  
Kathy Lawton
Keyword(s):  
Comparative Analysis ◽  
Developmental Disabilities ◽  
Focus Groups ◽  
Service System ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
The Future ◽  
Brothers And Sisters

Abstract Siblings of individuals with intellectual and developmental disabilities (IDD) are likely to become caregivers for their brothers and sisters. The expectations of and experiences with caregiving, however, may be different. In this study, using focus groups, we compared the perspectives of siblings who were current caregivers (n  =  25) to siblings who anticipated being caregivers (n  =  17). Responses were compared and contrasted across four areas: caregiving responsibilities, rewards, challenges, and opinions toward being paid as a caregiver. Both caregiver groups were knowledgeable about and invested in their brothers and sisters. Also, they both reported that they enjoyed bonding with their brothers and sisters. Challenges, for current caregivers, related to understanding and navigating the service system. In contrast, anticipated caregivers were concerned about planning for the future. Mixed viewpoints were expressed about receiving pay for providing care although a greater number of current caregivers were receptive to it as a means to supporting their own families.

Self-Reported Guilt Among Adult Siblings of People With Intellectual and Developmental Disabilities

2019 ◽  
Vol 124 (5) ◽  
pp. 470-477
Author(s):  
Carolyn M. Shivers
Keyword(s):  
Depressive Symptoms ◽  
Developmental Disabilities ◽  
Behavioral Problems ◽  
Sibling Relationships ◽  
Well Being ◽  
Intellectual And Developmental Disabilities ◽  
Adult Health ◽  
Adult Siblings ◽  
Emotional Needs ◽  
Adult Sibling

Abstract As more siblings become responsible for their aging brothers and sisters with intellectual and developmental disabilities, it becomes increasingly important to understand these siblings' emotional needs, including potential negative emotions such as guilt. This study examined the presence and correlates of self-reported guilt among 1,021 adult siblings of people with intellectual and developmental disabilities. Respondents completed the Adult Sibling Questionnaire, a national survey examining characteristics of adult health, depression, and feelings of guilt. Over 50% of siblings reported feeling increased guilt. Siblings who experienced increased guilt (versus those who did not) experienced less close sibling relationships, more depressive symptoms, and lower levels of well-being. Siblings experiencing more guilt also had brothers/sisters with more severe emotional/behavioral problems.

Who Helps? Characteristics and Correlates of Informal Supporters to Adults With Disabilities

2017 ◽  
Vol 122 (6) ◽  
pp. 492-510 ◽  
Author(s):  
Kelli A. Sanderson ◽  
Meghan M. Burke ◽  
Richard C. Urbano ◽  
Catherine K. Arnold ◽  
Robert M. Hodapp
Keyword(s):  
Developmental Disabilities ◽  
National Survey ◽  
People With Disabilities ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
Adults With Disabilities ◽  
Functioning Level ◽  
The Individual ◽  
Informal Supports

Abstract This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.

Involvement of Adult Siblings of Persons With Developmental Disabilities in Future Planning

2009 ◽  
Vol 47 (3) ◽  
pp. 208-219 ◽  
Author(s):  
Tamar Heller ◽  
John Kramer
Keyword(s):  
Developmental Disabilities ◽  
Support Groups ◽  
Financial Support ◽  
Primary Caregivers ◽  
Support Needs ◽  
Adult Siblings ◽  
Future Planning ◽  
Factors Influencing ◽  
Caregiving Responsibility ◽  
Future Plans

Abstract This study examined factors influencing involvement of siblings of individuals with developmental disabilities in future planning and their expectation of future caregiving. The sample consisted of 139 adult siblings recruited from an online sibling list and a sibling conference. Results indicated that few families made plans or involved siblings in the planning. Siblings who were most involved in future planning were older, more involved in disability activities, and provided more support to their sibling with disabilities. About 38% of siblings expected to be primary caregivers and were more likely to expect this role if the sibling with a disability lived closer and was female, had more sibling contact, provided them with more support, and felt greater caregiving satisfaction. Major support needs of siblings were for support groups, workshops–training on how to assume caregiving responsibility, financial support, and printed material on making future plans.

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