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.

Sibling Advocacy: Perspectives About Advocacy FromSiblings of Individuals With Intellectual and Developmental Disabilities

Inclusion ◽  
2015 ◽  
Vol 3 (3) ◽  
pp. 162-175 ◽  
Author(s):  
Meghan M. Burke ◽  
Catherine K. Arnold ◽  
Aleksa L. Owen
Keyword(s):  
Developmental Disabilities ◽  
Focus Groups ◽  
Peer Support ◽  
Research Policy ◽  
Intellectual And Developmental Disabilities ◽  
Policy And Practice ◽  
Brothers And Sisters

Abstract As individuals with intellectual and developmental disabilities (IDD) live longer and begin to outlive their parents, siblings take on greater supportive roles including advocacy. Yet, little is known about the ways in which siblings advocate with and for their brothers and sisters with IDD as well as for broad, systemic changes. In this study, we conducted four focus groups (N = 18) with siblings of individuals with IDD. We found that siblings defined and engaged in case advocacy (i.e., advocacy on behalf of their brothers and sisters with IDD) and cause advocacy (i.e., advocacy for larger systemic changes). Regarding case advocacy, siblings were motivated to advocate to secure appropriate services for their brothers and sisters. For cause advocacy, siblings attempted to create sweeping changes for individuals with IDD by educating others and participating in collective advocacy methods. Regardless of the type of advocacy, all siblings felt they needed more information and peer support to effectively advocate. Implications for research, policy, and practice are discussed.

Participatory, art-based appreciative inquiry with artists labelled/with intellectual and developmental disabilities

2021 ◽  
Vol 00 (00) ◽  
pp. 1-17
Author(s):  
Sara Miller
Keyword(s):  
Developmental Disabilities ◽  
Appreciative Inquiry ◽  
The United States ◽  
Intellectual And Developmental Disabilities ◽  
Community Based ◽  
Participatory Art ◽  
The Future ◽  
Online Methods ◽  
And Control ◽  
Community Access

People labelled/with intellectual and developmental disabilities (IDD) participate in community-based studio programming across the United States, yet their experiences and preferences for studio programming are not well known. The goal of this research was to learn what artists in a community-based studio think is important about their studio and what they want to change in the future. Using art-based appreciative inquiry and online methods, the artists were prompted to talk and create artwork about ‘what is most important’ in the studio and ‘what we want for the future’. The artists reported that the most important aspects of the studio are the staff and their friends at the studio and the opportunity to make art that is motivated by their interests. The wishes expressed by the artists included increased opportunities to be social, to make more money, to have more community access and more choice and control in the studio.

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.

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

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.

Falling Through the Cracks: Caregivers’ Experiences With Choice of Providers

2016 ◽  
Vol 30 (4) ◽  
pp. 338-352
Author(s):  
Susan Neely-Barnes ◽  
Stephen Zanskas ◽  
Daniel Lustig ◽  
Rachel Duerr ◽  
Minna Zhao
Keyword(s):  
Developmental Disabilities ◽  
Focus Groups ◽  
Independent Living ◽  
Direct Care ◽  
Care Staff ◽  
Intellectual And Developmental Disabilities ◽  
Direct Care Staff ◽  
Lack Of Information ◽  
Caregiver Needs ◽  
Interpretive Method

Purpose:We sought to understand the experiences of family members and direct care staff of adults with intellectual and developmental disabilities in a private pay day program focused on socialization and recreational skills.Method:Two focus groups were held with parents/caregivers and one with staff. Using an interpretive method, two investigators independently coded the transcripts and arrived at themes.Results:Themes identified included transition, lack of information, lack of resources, caregiver needs, independence, employment, and education.Conclusion:Families and staff experienced frustration with service fragmentation/access to alternative programming. Families and staff wanted opportunities for employment and independent living programming but lacked resources. Implications for practice and policy are discussed.

National Goals for the Education of Children and Youth With Intellectual and Developmental Disabilities: Honoring the Past While Moving Forward

Inclusion ◽  
2015 ◽  
Vol 3 (4) ◽  
pp. 219-226 ◽  
Author(s):  
Colleen A. Thoma ◽  
Irina Cain ◽  
Christine Walther-Thomas
Keyword(s):  
Developmental Disabilities ◽  
Children And Youth ◽  
Intellectual And Developmental Disabilities ◽  
Research And Practice ◽  
The Past ◽  
The Future ◽  
Practice Knowledge

Abstract This article describes the process by which members of the Education Strand of the National Goals 2015 Conference identified recommendations for goals for the next 10 years designed to build on the best of our field's current research and practice knowledge. We describe the Education Strand's five research goals, developed to help the field meet the challenges of the future, and discuss the process that the group of experts who participated in the Education Strand used to reach consensus on these goals.

How COVID-19 May Change the World of Services to People With Intellectual and Developmental Disabilities

2020 ◽  
Vol 58 (5) ◽  
pp. 355-360
Author(s):  
Valerie J. Bradley
Keyword(s):  
Developmental Disabilities ◽  
Service System ◽  
People With Disabilities ◽  
Intellectual And Developmental Disabilities ◽  
The World

Abstract The COVID-19 epidemic caused disruption and dislocation in the lives of people with disabilities, their families, and providers. What we have learned during this period regarding the strengths and weaknesses of the service system for people with disabilities should provide a roadmap for building a more robust and agile system going forward. Based on a canvas of leaders in our field, I propose a way of outlining a reimagined system.

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