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End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities
- Authors:
- D'HAENE I., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 54(12), December 2010, pp.1067-1077.
- Publisher:
- Wiley
This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities accommodating persons with intellectual disabilities, and to describe training, education and quality assessments of end-of-life care. A cross-sectional mail survey was conducted among general directors of all 140 residential care facilities accommodating persons with intellectual disabilities in Flanders, Belgium. The institutions were also asked to provide a copy of their end-of-life care policy documents for content analysis. Of the 140 institutions, 84 completed the questionnaire and 25 provided 45 policy documents. Presence of policies on specific end-of-life decisions with a possible life-shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life-prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end-of-life decisions with a possible life-shortening effect are mentioned but rarely elaborated on. Few documents incorporate the distinctive features and needs of persons with intellectual disabilities regarding end-of-life care. Half of the institutions trained and educated their professional care providers in some aspects of end-of-life care while one-third assessed the satisfaction of residents and families on several of these aspects. The article concludes that the presence of end-of-life care policies is low in Flemish residential care facilities and their content is not very specific for persons with intellectual disabilities.
Living 'a life like ours': support workers' accounts of substitute decision-making in residential care homes for adults with intellectual disabilities
- Authors:
- DUNN M. C., CLARE I.C.H., HOLLAND A. J.
- Journal article citation:
- Journal of Intellectual Disability Research, 54(2), February 2010, pp.144-160.
- Publisher:
- Wiley
In England and Wales, the Mental Capacity Act 2005 (MCA) provides a new legal framework to regulate substitute decision-making relating to the health and personal welfare of adults who lack the capacity to make one or more autonomous decisions. Substitute decisions must be made in the 'best interests' of the person lacking capacity. This study explored how statutory legal regulation under the MCA interfaces with the practical and ethical dynamics of care and support in the context of community-based support of adults with intellectual disabilities living in residential care homes in England. The data are drawn from 21 qualitative interviews with support workers in this setting and observations of care practices. 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'. They described how they draw on their own values and life experiences to shape the substitute decisions they make on behalf of residents. Support workers' accounts revealed discrepancies between the legal regulation of substitute decision-making and the ways that they made sense of their work. It is suggested that 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.
21st century asylums?: essays about low secure hospital care for people with learning disabilities
- Authors:
- PIACHAUD Jack, et al
- Publisher:
- Premium
- Publication year:
- 2004
- Pagination:
- 66p.
- Place of publication:
- London
In a new booklet, provocatively entitled 21st Century Asylums?, the St Luke's Hospital Group calls for "open and honest" discussion of how best to care for people who have both learning disabilities and mental health needs. "Institutional care is essential for many people with learning disabilities and troubled minds. We have to bring it back, but to bring it back in a form consistent with the values of our age," the group says. St Luke's has a range of low-security hospitals. Those for "clients who are likely to live their entire life with us", it says, have large grounds with facilities such as swimming pools and cycle and running tracks. Values of choice, decision making and empowerment are anchored in the care culture, it claims, and quality of life is higher, and dependence on medication lower, than in community settings. The booklet has provoked controversy.
Parental involvement in the residential care of persons with intellectual disability: the impact of parents' and residents' characteristics and the process of relocation
- Authors:
- SCHWARTZ Chaya, TSUMI Ayelet
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 16(4), December 2003, pp.285-293.
- Publisher:
- Wiley
This study addresses three goals: (i) to describe the extent of parental involvement in residential care (post-placement); (ii) to describe the extent of parental involvement in the relocation process (pre-placement); and (iii) to examine the impact of residents' characteristics, parents' characteristics and pre-placement parental involvement on post-placement parental involvement. Ninety-seven parents of residents living in residential care facilities for people with intellectual disability completed the Parental Involvement in Residential Care Questionnaire that was constructed for this study. Post-placement involvement was expressed by parents' high level of visiting to the residence, close direct contact with the resident and the staff, and low level of participation in decision making concerning their son/daughter and the operation of the residence. Most parents were not actively involved in the relocation process, did not participate in selecting the current residence and did not visit the residence prior to the move. However, the majority participated in a preparation programme for parents whose son/daughter were candidates for out-of-home placement. Participants whose sons/daughters lived in the residence for fewer years or whose son's/daughter's level of intellectual disability was less severe reported a higher level of post-placement involvement. These parents had fewer children at home and had participated in a longer preparation pre-relocation programme.
Benefit groups and resource groups for adults with intellectual disabilities in residential accommodation
- Authors:
- COMAS-HERRERA Adelina, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 14(2), 2001, pp.120-140.
- Publisher:
- Wiley
Examines whether 'benefit groups' and 'resource groups' can be developed so as to assist decision-making processes in service commissioning by using a survey of the characteristics of 2093 adults with intellectual disabilities (IDs) in residential accommodation (mainly National Health Service trusts), and a supplementary collection of data on service utilization and costs (for a subsample of 930 clients). The clients were classified, according to their needs into benefit groups (BGs), and the services which they used were classified in terms of coherence as likely packages of care and similar consumption of resources as resource groups (RGs). It proved possible to construct nine BGs and 96 possible RGs which had both intuitive meaning and explanatory power. Statistical analysis showed that the resulting BGs and RGs are meaningful ways of classifying ID and challenging behaviour needs and costs.
Learning support for people with learning disabilities in community residential projects
- Author:
- DAVIES Sheila
- Journal article citation:
- Mental Health Care, 2(9), May 1999, pp.303-307.
- Publisher:
- Pavilion
Community care should in theory result in greater independence and autonomy for people with learning disabilities. Traditionally, work with people with learning disabilities has been dominated by the behaviourist approach. The author reports the findings of a qualitative study of residential care projects which suggest that such approaches to learning may in fact constrain potential for independent living.
A long road to travel: the impact of the Mental Capacity Act on adults with complex needs in residential settings
- Author:
- BADGER Janet
- Publisher:
- SCOPE
- Publication year:
- 2009
- Pagination:
- 53p.
- Place of publication:
- London
This research, funded by the Department of Health, investigated the impact the Mental Capacity Act 2005 (MCA) has had, since its implementation, on a small number of individuals with limited mental capacity who use Scope’s residential services. The 12 month study looked at the decision-making process in six different situations to identify the role of different stakeholders in that process, especially the service user. Stakeholders included managers of services, care staff, other professionals , families, advocates and the service user. Six people, representing a range of abilities and a mix of gender and age, from three different Scope residential services across England were included. Four subjects had family or an advocate involved in their care. Stakeholders were asked to complete workbooks based on their own perception of the quality of life outcomes for the service user. Unstructured interviews were also conducted. From the findings it is concluded that, at this early stage in implementation of the MCA there was no evidence to show that the Act was having an impact on the lives of the service users. However, there were examples where the Act could have had considerable influence if it had been implemented. Recommendations are made for service providers, supporting service users, family and carers, and the Commission for Social Care Inspectorate.
Rooting it out
- Author:
- GEORGE Mike
- Journal article citation:
- Community Care, 14.10.99, 1999, pp.32-33.
- Publisher:
- Reed Business Information
Social worker talks about how she tackled the problem of what to do about a residential care resident with learning difficulties whose aggressive behaviour posed a risk to staff and himself.
Using research as a tool for change in a residential setting
- Authors:
- HOGG Bryan, SCHUR Helen
- Journal article citation:
- Care the Journal of Practice and Development, 6(4), September 1998, pp.17-35.
- Publisher:
- Pepar
Discusses the use of a participatory research project in a residential home for people with learning difficulties. The main aims were to gather the views of staff, residents and relatives on how best to increase the level of choice and to perceived blocks to increasing choice. Summarises the recommendations and shortcomings of the project.
Pathways to success
- Author:
- GEORGE Mike
- Journal article citation:
- Community Care, 19.2.98, 1998, p.25.
- Publisher:
- Reed Business Information
Reports on a group of people with learning difficulties who assessed the residential homes in their area in preparation for moving out of long stay institutions.