Experiences of siblings of people with intellectual disabilities: Multiregional perspectives

• Published date: 01 April 2022
• Author: Alicia M. Paul,Meghan M. Hussey,Ashley C. Woodman,Ashlyn L. Smith,Timothy P. Shriver
• Date: 01 April 2022
• DOI: http://doi.org/10.1111/fare.12608

RESEARCH

Experiences of siblings of people with intellectual

disabilities: Multiregional perspectives

Alicia M. Paul

1,2

|Meghan M. Hussey

1

|Ashley C. Woodman

3

|

Ashlyn L. Smith

4

|Timothy P. Shriver

5

1

Department of Global Youth Engagement,

Special Olympics International, Washington,

District of Columbia, USA

2

Department of Global Health, Milken

Institute School of Public Health, George

Washington University, Washington, District

of Columbia, USA

3

Department of Psychological and Brain

Sciences, University of Massachusetts

Amherst, Amherst, Massachusetts, USA

4

Department of Research and Evaluation,

Special Olympics International, Washington,

District of Columbia, USA

5

Board of Directors, Special Olympics

International, Washington, District of

Columbia, USA

Correspondence

Alicia M. Paul, 415 N. Washington Street, 5th

Floor, Baltimore, MD 21231, USA.

Email: apaul5@gwu.edu

Funding information

This work was supported by the Samuel Family

Foundation.

Abstract

Objective: This study described the benefits, challenges,

and support needs of siblings of people with intellectual

disabilities in Latin America, Africa, and Asia-Pacific.

Background: Growing up with a sibling with an intellectual

disability can influence young people in various ways. Pre-

vious research has focused primarily on Western contexts

and the use of parent rather than sibling perceptions.

Method: Twenty-two siblings of people with intellectual

disabilitiesbetweenages8and25 yearsparticipatedin

three semistructured focus groups during Special Olympics

Regional Sibling and Family Workshops. Participants dis-

cussed their personal experiences and perceived support

needs. Transcripts were coded for themes and subthemes

using an iterative process.

Results: Thematic analysis revealed positive themes related

to valuing siblings with intellectual disabilities, close rela-

tionships, and personal growth. Challenging themes found

were related to the self, family, and broader community.

For supports needed, themes included future planning and

services for siblings with intellectual disabilities.

Conclusion: Siblings from these regions described their

experiences as a combination of benefits and challenges,

noting the distinct influence of stigma on their relation-

ships and the need for higher quality services.

Implications: Findings point to a need for a whole-family-

centered approach to support siblings of people with intel-

lectual disabilities in the Global South.

KEYWORDS

cultural diversity, developmental disability, family, sibling relations

Received: 22 October 2020Revised: 3 April 2021Accepted: 17 July 2021

DOI: 10.1111/fare.12608

© 2021 National Council on Family Relations.

Family Relations. 2022;71:671–685.wileyonlinelibrary.com/journal/fare 671