"I don't care anymore if she wants to cry through the whole conversation, because it needs to be addressed": Adult siblings' experiences of future care planning for brothers and sisters with intellectual disability

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Date
2020-02-25
Authors
Leane, Máire
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John Wiley & Sons, Ltd.
Published Version
10.1111/jar.12716
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Abstract
Background: In families with a member with a developmental disability (DD), future care planning is limited (Brennan et al., Journal of Applied Research in Intellectual Disabilities, 31, 2018, 226; Bowey and McGlaughlin, British Journal of Social Work, 31, 2007, 39; Davys et al., Journal of Intellectual Disability, 14, 2010, 167; Davys et al., British Journal of Learning Disabilities, 43, 2014, 219; Davys et al., Journal of Applied Research in Intellectual Disabilities, 29, 2016, 220). However, most siblings without disabilities (SWD) expect to be involved in the future care of their brother or sister with DD (Benderix and Sivberg, International Paediatric Nursing, 22, 2007, 410; Gomez de la Cuesta and Cos, We exist too: Valuing the contributions of siblings, UK, National Autistic Society, 2012; Heller and Arnold, Journal of Policy and Practice in Intellectual Disabilities, 7, 2010, 16). Materials and Methods: Based on qualitative interviews with 25 SWD in Ireland, this article explores how SWD experience future planning. Results and Discussion: The findings indicate that SWD experience care planning as an ongoing, fluid and emotionally charged process. Parental fears, about future care landscapes they do not control and about passing on intergenerational care responsibilities, emerge as key factors inhibiting planning. Conclusion: Attention to the highly emotive nature of care concerns, and to the tentative pace of planning that is comfortable for families, will help professionals provide optimum planning support.
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Keywords
Developmental disabilities , Experiences of siblings without disabilities , Future care planning , Intellectual disabilities
Citation
Leane, M. (2020) '"I don't care anymore if she wants to cry through the whole conversation, because it needs to be addressed": Adult siblings' experiences of future care planning for brothers and sisters with intellectual disability', Journal of Applied Research in Intellectual Disabilities, 33(5), pp. 950-961. doi: 10.1111/jar.12716
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https://hdl.handle.net/10468/10447
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Applied Social Studies - Journal Articles
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© 2020, John Wiley & Sons, Ltd. This is the peer reviewed version of the following article: Leane, M. (2020) '"I don't care anymore if she wants to cry through the whole conversation, because it needs to be addressed": Adult siblings' experiences of future care planning for brothers and sisters with intellectual disability', Journal of Applied Research in Intellectual Disabilities, 33(5), pp. 950-961, doi: 10.1111/jar.12716, which has been published in final form at https://doi.org/10.1111/jar.12716. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.