Literature DB >> 20015161

Living 'a life like ours': support workers' accounts of substitute decision-making in residential care homes for adults with intellectual disabilities.

M C Dunn1, I C H Clare, A J Holland.   

Abstract

In England and Wales, the Mental Capacity Act 2005 (MCA) provides a new legal framework to regulate substitute decision-making relating to the welfare of adults who lack the capacity to make one or more autonomous decisions about their care and support. Any substitute decision made on behalf of an adult lacking capacity must be in his/her 'best interests'. However, the value of adopting established principles and procedures for substitute decision-making in practice is uncertain, and little is known about the legal or ethical dynamics of social care support, including the day-to-day residential support provided to adults with intellectual disabilities (ID). Methods This paper reports a qualitative, grounded theory analysis of 21 interviews with support workers working in residential care homes for adults with ID, and observations of care practices. Results In contrast to the narrow legal responsibilities placed upon them, it is argued that support workers interpret substitute decision-making within a broad moral account of their care role, orientating their support towards helping residents to live 'a life like ours'. In so doing, support workers describe how they draw on their own values and life experiences to shape the substitute decisions that they make on behalf of residents. Conclusions Support workers' accounts reveal clear discrepancies between the legal regulation of substitute decision-making and the ways that these support workers make sense of their work. Such discrepancies have implications both for the implementation of the MCA, and for the role of support workers' values in the conceptualisation and delivery of 'good' care.

Mesh:

Year:  2009        PMID: 20015161     DOI: 10.1111/j.1365-2788.2009.01228.x

Source DB:  PubMed          Journal:  J Intellect Disabil Res        ISSN: 0964-2633


  7 in total

1.  Assessment of objectively measured physical activity levels in individuals with intellectual disabilities with and without Down's syndrome.

Authors:  Alexander C Phillips; Anthony J Holland
Journal:  PLoS One       Date:  2011-12-21       Impact factor: 3.240

2.  'It's my home and your work': the views of a filmed vignette describing a challenging everyday situation from the perspective of people with intellectual disabilities.

Authors:  Ove Hellzen; Marit Haugenes; May Østby
Journal:  Int J Qual Stud Health Well-being       Date:  2018-12

3.  Bridging the gap between policy and practice: a qualitative analysis of providers' field experiences tinkering with directly observed therapy in patients with drug-resistant tuberculosis in Addis Ababa, Ethiopia.

Authors:  Kirubel Manyazewal Mussie; Christoph Gradmann; Tsegahun Manyazewal
Journal:  BMJ Open       Date:  2020-06-16       Impact factor: 2.692

Review 4.  Making healthcare decisions in a person's best interests when they lack capacity: clinical guidance based on a review of evidence.

Authors:  Derick T Wade; Celia Kitzinger
Journal:  Clin Rehabil       Date:  2019-06-06       Impact factor: 3.477

5.  Managing relational autonomy in interactions: People with intellectual disabilities.

Authors:  Sandra Dowling; Val Williams; Joe Webb; Marina Gall; Deborah Worrall
Journal:  J Appl Res Intellect Disabil       Date:  2019-04-12

6.  Taking Wishes and Feelings Seriously: The Views of People Lacking Capacity in Court of Protection Decision-Making.

Authors:  Nell Munro
Journal:  J Soc Welf Fam Law       Date:  2014-03

7.  Adjusting a mainstream weight management intervention for people with intellectual disabilities: a user centred approach.

Authors:  Liz Croot; Melanie Rimmer; Sarah Salway; Chris Hatton; Emma Dowse; Jacquie Lavin; Sarah E Bennett; Janet Harris; Alicia O'Cathain
Journal:  Int J Equity Health       Date:  2018-10-22
  7 in total

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