Siblings caring for siblings with Intellectual Disabilities: naming and negotiating emotional tensions

Show simple item record

dc.contributor.author Leane, Máire
dc.date.accessioned 2019-08-27T15:12:28Z
dc.date.available 2019-08-27T15:12:28Z
dc.date.issued 2019-04-19
dc.identifier.citation Leane, M. (2019) 'Siblings caring for siblings with Intellectual Disabilities: Naming and negotiating emotional tensions', Social Science & Medicine, 230, pp. 264-270. doi: 10.1016/j.socscimed.2019.04.022 en
dc.identifier.volume 230 en
dc.identifier.startpage 264 en
dc.identifier.endpage 270 en
dc.identifier.issn 0277-9536
dc.identifier.uri http://hdl.handle.net/10468/8400
dc.identifier.doi 10.1016/j.socscimed.2019.04.022 en
dc.description.abstract Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings. Drawing on literature on moral emotions and the ethics of care, and on narratives collected from 25 ND siblings in Ireland in 2015/6, this paper explores the emotional dynamics entwined in the care and support roles ND siblings engage in. Findings indicate that relationships forged in childhood underpinned the moral ethic to care exhibited by many participants and that their caregiving was experienced as moral practice and emotional engagement, shaped by and constitutive of biography and moral identity. When making care choices, siblings undertook evaluative judgement of their own behaviours, which was informed by perceptions about obligations to care and about what constitutes good care. Decisions about care had emotional resonance, with guilt, other-oriented empathy and righteous-anger emerging as the key emotions in the narratives. Dilemmas between autonomy and relatedness caused siblings to grapple with feelings of resentment and guilt, and many struggled to exercise self-compassion in the face of perceived moral failings. Others experienced conflict characterised by a struggle to reconcile competing care and nurturing expectations within their intimate relationships. Through ongoing self-evaluation of their care behaviours siblings’ moral identities were continually reconstituted. It is imperative that service providers and professionals understand and acknowledge such moral and emotional dynamics when working with people with ID/ASD and their families. en
dc.description.sponsorship National Disability Authority, Ireland (Research Promotion Scheme) en
dc.format.mimetype application/pdf en
dc.language.iso en en
dc.publisher Elsevier en
dc.relation.uri http://www.sciencedirect.com/science/article/pii/S0277953619302229
dc.rights © 2019 Elsevier Ltd. All rights reserved. This manuscript version is made available under the CC-BY-NC-ND 4.0 license en
dc.rights.uri http://creativecommons.org/licenses/by-nc-nd/4.0/ en
dc.subject Sibling care for siblings en
dc.subject Intellectual disability en
dc.subject Autism spectrum disorder en
dc.subject Emotions en
dc.subject Ethics of care en
dc.subject Adult siblings en
dc.subject Down syndrome en
dc.subject Older people en
dc.subject Autism en
dc.subject Care en
dc.subject Individuals en
dc.subject Experiences en
dc.subject Children en
dc.subject Life en
dc.title Siblings caring for siblings with Intellectual Disabilities: naming and negotiating emotional tensions en
dc.type Article (peer-reviewed) en
dc.internal.authorcontactother Máire Leane, Applied Social Studies, University College Cork, Cork, Ireland. +353-21-490-3000 Email: m.leane@ucc.ie en
dc.internal.availability Full text available en
dc.check.info Access to this article is restricted until 36 months after publication by request of the publisher. en
dc.check.date 2022-04-19
dc.date.updated 2019-08-27T15:04:44Z
dc.description.version Accepted Version en
dc.internal.rssid 490085881
dc.internal.wokid WOS:000470342400028
dc.contributor.funder National Disability Authority, Ireland en
dc.description.status Peer reviewed en
dc.identifier.journaltitle Social Science & Medicine en
dc.internal.copyrightchecked No
dc.internal.licenseacceptance Yes en
dc.internal.IRISemailaddress m.leane@ucc.ie en


Files in this item

Files Size Format View

There are no files associated with this item.

This item appears in the following Collection(s)

Show simple item record

© 2019 Elsevier Ltd. All rights reserved. This manuscript version is made available under the CC-BY-NC-ND 4.0 license Except where otherwise noted, this item's license is described as © 2019 Elsevier Ltd. All rights reserved. This manuscript version is made available under the CC-BY-NC-ND 4.0 license
This website uses cookies. By using this website, you consent to the use of cookies in accordance with the UCC Privacy and Cookies Statement. For more information about cookies and how you can disable them, visit our Privacy and Cookies statement