Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
J Intellect Disabil Res. 2011 Sep;55(9):873-84. doi: 10.1111/j.1365-2788.2011.01445.x. Epub 2011 Jul 5.
In the UK those paid to support adults with intellectual disabilities must manage two potentially conflicting duties that are set out in policy documents as being vital to their role: protecting service users (their duty of care) and recognising service users' autonomy. This study focuses specifically on the support of people with the genetically determined condition, Prader-Willi syndrome (PWS). Due to the behaviours associated with PWS, the support of this group of people vividly illustrates the tension between respect for autonomy and duty of care. This article explores how support workers working in a residential group home managed their competing duties of managing risk and promoting independence in practice.
An ethnographic study, comprising of qualitative observations, semi-structured interviews and documentary analysis, was undertaken to investigate the work of support workers in a UK residential group home specialising in the support of adults diagnosed with PWS. The study focused on how support workers attempted to reconcile the tension between protecting service users from the risks associated with the syndrome and acknowledging service users' autonomy by enabling independence.
Findings demonstrate that risk was central to the structure of care delivery at the group home and support workers often adhered to standardised risk management procedures. The organisation also required support workers to promote service users' independence and many thought acknowledging service users' autonomy through the promotion of their independence was important. To manage tensions between their differing duties, some support workers deviated from standardised risk management procedures to allow service users a degree of independence.
There is a tension between the duty of care and the duty to recognise autonomy at the level of service delivery in residential homes. Support workers attempt to manage this tension; however, further work needs to be done by both residential services and policy makers to facilitate the reconciliation of the duty of care with the duty to recognise service users' autonomy in practice.
在英国，受薪照顾智障成年人的人士，必须履行政策文件中规定的两项对其工作至关重要的潜在冲突职责：保护服务使用者（关怀责任）和承认服务使用者的自主权。这项研究特别关注的是患有遗传性普拉德-威利综合征（PWS）的人的支持。由于与 PWS 相关的行为，对这组人的支持生动地说明了尊重自主权和关怀责任之间的紧张关系。本文探讨了在居住集体之家工作的支持人员如何在实践中管理管理风险和促进独立性的相互竞争的职责。
进行了一项民族志研究，包括定性观察、半结构化访谈和文献分析，以调查英国居住集体之家的支持人员的工作，该集体之家专门为被诊断患有 PWS 的成年人提供支持。该研究的重点是支持人员如何试图调和保护服务使用者免受与该综合征相关的风险与承认服务使用者自主权以实现独立之间的紧张关系。
研究结果表明，风险是集体之家护理服务提供结构的核心，支持人员通常遵守标准化的风险管理程序。该组织还要求支持人员促进服务使用者的独立性，许多人认为通过促进服务使用者的独立性承认服务使用者的自主权很重要。为了管理他们不同职责之间的紧张关系，一些支持人员偏离了标准化的风险管理程序，允许服务使用者一定程度的独立性。
在居住型家庭中，服务提供层面存在关怀责任和承认自主权的责任之间的紧张关系。支持人员试图管理这种紧张关系；然而，居住服务和政策制定者都需要进一步努力，以促进关怀责任与实践中承认服务使用者自主权的责任的协调。
