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Caregiving Experiences and Outcomes: Wellness of Adult Siblings of People with Intellectual Disabilities

  • Intellectual Disability (Y Lunsky, Section Editor)
  • Published:
Current Developmental Disorders Reports Aims and scope Submit manuscript

Abstract

Purpose of Review

The goal of this paper is to explore the wellness of adult siblings of people with intellectual disabilities (ID) related to caregiving experiences and outcomes, supports for siblings, gaps in the literature, and future directions to advance research in this area.

Recent Findings

Findings are shared from the literature on caregiver experiences of adult siblings of people with ID with a specific focus on outcomes related to wellness. Overall, siblings of people with IDD have positive outcomes in childhood while increased anxiety may happen in adolescence; outcomes for adults are mixed and need greater exploration.

Summary

First five outcome areas are described related to wellness of adult siblings of people with ID: (1) impact on health and well-being, (2) financial impact, (3) cultural context, (4) sibling relationship quality, and (5) future caregiving. Secondly, supports that enhance wellness for siblings of adults with ID are discussed including peer/emotional support and knowledge of services and supports. Thirdly, gaps are identified and critiqued with ideas shared about ways to address the gaps in future studies such as investing in interventions that include and target adult siblings of people with ID to enhance wellness. Finally, future directions are proposed to advance sibling disability research in order to improve the wellness of adult siblings of people with ID and their families, including the value of doing research with a Disability Studies perspective.

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Acknowledgements

The contents of this article were developed under grants from the National Institute on Disability, Independent Living and Rehabilitation Research, Administration for Community Living, grant # 90RT5032-01-00 to the Family Support Research and Training Center and grant # 90RT5012-01-03 to the Rehabilitation Research and Training Center on Developmental Disabilities and Health and University of Illinois at Chicago. The contents of this article do not necessarily represent the policy of the US Federal Government. Please note that the authors are on the Board of the Sibling Leadership Network.

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Authors and Affiliations

  1. Family Support Research and Training Center and Rehabilitation Research and Training Center on Developmental Disabilities and Health, Department of Disability and Human Development, University of Illinois at Chicago, 1640 West Roosevelt Road, MC 626, Chicago, IL, 60608-6904, USA

    Catherine Keiling Arnold & Tamar Heller

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  1. Catherine Keiling Arnold
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  2. Tamar Heller
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Correspondence to Catherine Keiling Arnold.

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Conflict of Interest

Catherine Keiling Arnold is the Executive Director of the Sibling Leadership Network. Tamar Heller serves as board member of the Sibling Leadership Network.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

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This article is part of the Topical Collection on Intellectual Disability

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Arnold, C.K., Heller, T. Caregiving Experiences and Outcomes: Wellness of Adult Siblings of People with Intellectual Disabilities. Curr Dev Disord Rep 5, 143–149 (2018). https://doi.org/10.1007/s40474-018-0143-4

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  • DOI: https://doi.org/10.1007/s40474-018-0143-4

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