Support needs of Canadian adult siblings of brothers and sisters with intellectual/developmental disabilities

2020 ◽  
Vol 17 (3) ◽  
pp. 239-246
Author(s):  
Brianne K. Redquest ◽  
Ami Tint ◽  
Helen Ries ◽  
Eric Goll ◽  
Becky Rossi ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Support Needs ◽  
Adult Siblings ◽  
Brothers And Sisters

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.

Support Needs of Siblings of People with Developmental Disabilities

2012 ◽  
Vol 50 (5) ◽  
pp. 373-382 ◽  
Author(s):  
Catherine K. Arnold ◽  
Tamar Heller ◽  
John Kramer
Keyword(s):  
Developmental Disabilities ◽  
Qualitative Study ◽  
Comparison Method ◽  
Support Needs ◽  
Theory Approach ◽  
Adult Siblings ◽  
Sibling Support ◽  
Formal Support ◽  
Related Information ◽  
Grounded Theory Approach

Abstract This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis, interpretation of findings, and discussion using the constant comparison method. Eleven core variables and 3 overarching themes emerged. Three overarching themes for sibling support needs include: (a) getting disability-related information, (b) getting support for their caregiving role, and (c) enhancing the formal support system to address sibling needs.

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.

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.

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