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Modern times: an ethnographic study on the quality of life of people with a high support need in a Flemish residential facility
- Authors:
- de WAELE Isabel, Van HOVE Geert
- Journal article citation:
- Disability and Society, 20(6), October 2005, pp.625-639.
- Publisher:
- Taylor and Francis
This ethnographic study shows the impact of the care system on clients’ and staff’s life experiences, with the clear distance between these two groups as one of the core issues. Together with a dominant care approach and a well established but subtile system of control, it makes them function in systems that are characterized by an oppressing care culture. Learned helplessness prevents both groups of acting upon quality of life outcomes. The idea of supporting a life of good quality through merely improving these traditional care systems should therefore be considered with caution, and real alternatives should be considered to open this barrier of the oppressing care culture.
Paid carers' understanding and experiences of meaningful involvement in bereavement for people with intellectual disability when a significant other is dying
- Authors:
- HEDAYIOGLU Julie, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 35(1), 2022, pp.143-149.
- Publisher:
- Wiley
Background: Wider communication about death and dying for those with intellectual disabilities has been highlighted as being of key importance. Objective: To gain the perspective of paid carers based in residential homes about meaningfully supporting individuals with intellectual disabilities in the bereavement process. Methods: Semi-structured interviews were conducted with paid carers working across two residential homes. Results: Four themes were identified: (a) challenges in having conversations about death and dying; (b) meaningful involvement of residents in the bereavement process; (c) the relationship between paid carers and residents (including the impact of a resident's death on paid carers); and (d) the support needs of paid carers. Conclusions: The recommendations from previous research of meaningfully involving people with intellectual disabilities in the bereavement process have not filtered fully into practice. Paid carers still highlight the need for specialist support and advice to help them discuss and increase involvement in death and dying. (Edited publisher abstract)
National inspection of care and support for people with learning disabilities: overview
- Authors:
- CARE AND SOCIAL SERVICES INSPECTORATE WALES, HEALTHCARE INSPECTORATE WALES
- Publishers:
- Care and Social Services Inspectorate Wales, Healthcare Inspectorate Wales
- Publication year:
- 2016
- Pagination:
- 51
- Place of publication:
- Cardiff
Sets out the findings of the national inspection of quality and safety of care and support for adults with learning disabilities. The inspection includes fieldwork in six local authorities and corresponding health boards; the results of a thematic enquiry into services for people with learning disabilities regulated by CSSIW; and the results of a national data and self-assessment survey undertaken in all 22 local authorities in Wales. Inspectors focused on a number areas including: support for carers; whether local authorities provide information, advice and assistance; and whether or not local authorities have good leadership and governance arrangements. Inspectors from Healthcare Inspectorate Wales (HIW) also looked at the efficacy of the partnership between social services and health. Findings of the report looks at what is working well and areas for improvement under the following themes: understanding need, providing effective care and support, and leading in partnership. The report found that the quality of care and support for many people with learning disabilities depended on the effectiveness of the front line social services and health staff and the assertiveness of relatives. The report makes a number of recommendations, including: that local authorities review their quality assurance arrangements for care and support planning with individuals; for local authorities and health boards to share best practice; and for local authorities and health boards to ensure that the lines of accountability and responsibility in relation to adult safeguarding are clear and understood by staff. (Edited publisher abstract)
Public attitudes and personal concerns: opinion research to inform public policy and identify issues and opportunities in engaging civil society on caring for people with learning disabilities and related mental health issues
- Author:
- PIELLE CONSULTING GROUP
- Publisher:
- Pielle Consulting Group
- Publication year:
- 2007
- Pagination:
- 9p.
- Place of publication:
- London
Presents basic statistical results of market surveys into caring for people with learning disabilities and related mental health issues. Topics include public opinion of carers, care homes and access to information
People with intellectual disabilities living in generic residential services for older people in the UK
- Authors:
- THOMPSON D.J., RYRIE I., WRIGHT S.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 17(1), June 2004, pp.101-108.
- Publisher:
- Wiley
As part of a UK programme of work focusing on older people with intellectual disabilities, the circumstance of those who reside in generic services for older people were investigated. Questionnaires were sent to 2570 residential and nursing homes in 53 local authorities across the UK. Five hundred and thirty returned questionnaires identified 215 people with intellectual disabilities currently living in 150 homes. They were significantly younger than the other residents, and were placed in these homes more often because of organizational change or the ageing/death of a family carer, rather than any changes in their own needs. Several potential indicators of a low quality of life were identified, including limited opportunities to get out, to access day services, to have contact with family or friends and to receive input from professionals outside the home. Attention needs to be given both to people with intellectual disabilities already residing in older people's services and to the prevention of further inappropriate placements.
Effects of emotion-oriented care on elderly people with cognitive impairment and behavioral problems
- Authors:
- SCHRIJNEMAEKERS Vernon, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 17(10), October 2002, pp.926-937.
- Publisher:
- Wiley
This article investigates the effects of emotion-oriented care on the behavior of elderly people with cognitive impairment and behavioral problems. 16 Homes for the aged with structured day care units were randomly allocated to an intervention or control group. 151 Residents with cognitive impairment and behavioral problems were included in the study. The eight intervention homes received a training program with regard to emotion-oriented care. In the eight control homes usual care was continued. Measurements were performed at baseline and after 3, 6 and 12 months of follow-up (assessment by caregivers and relatives). The primary outcome measure was the change in behaviour of the residents. The article concludes that there is insufficient evidence yet to justify the implementation of emotion-oriented care on a large scale.
Working with older people with communication difficulties: an evaluation of care worker training
- Authors:
- BRYAN K., et al
- Journal article citation:
- Aging and Mental Health, 6(3), August 2002, pp.248-252.
- Publisher:
- Taylor and Francis
Research suggests that a high proportion of older people in residential and nursing care have communication difficulties and there is some awareness of the need for staff training to allow effective communication to be achieved. This article describes part of the evaluation of a one-day training package aimed at enabling care staff to communicate with older people who have a variety of communication difficulties. Care staff from four partner agencies completed questionnaires pre- and posttraining, addressing contact with people with communication disorders, previous training on communication, knowledge about communication, attitudes towards communication problems and strategies to help communication with people who have communication difficulties. Positive gains were found in attitudes and self-perceptions of knowledge and competence, as well as in appropriate citations of strategies to enhance communication. The findings are discussed with reference to the need for enhanced communication skills in care workers engendered by current developments in care policy.
The keys to life: report of the Care Inspectorate's inspection focus area 2014-2016
- Author:
- CARE INSPECTORATE
- Publisher:
- Care Inspectorate
- Publication year:
- 2017
- Pagination:
- 53
- Place of publication:
- Edinburgh
This report presents the results of thematic inspections of services for adults with learning disabilities in Scotland, which were carried out to examine the quality of services and the extent to which the key principles of The Keys to Life policy were being met. It also looks at the extent to which the learning from the Department of Health review into Winterbourne View Hospital in Gloucestershire is informing practice in Scotland. The inspection included care homes, care at home services, housing support services and d combined care at home/housing support services for people with a learning disability. The report examines the findings in relation to outcomes for people who use these services, and their carers, aligning these to the four overarching strategic outcomes of The Keys to Life: a healthy life; choice and control; independence; and active citizenship. The inspections found that over 93 per cent of the services were providing good, very good, or excellent care. They also identified a high-level awareness about The Keys to Life strategy. Where services were good, this related to the implementation of person-led care practices which promoted choice and protected the rights of those using services. Areas for improvement identified included: some care managers reporting difficulties in accessing the right healthcare for the people they support; improvements in the way care was planned and delivered; and providing activities that were better focused on people’s individual choices. Examples of good practice are also included throughout the report. (Edited publisher abstract)
Planning and decision making about the future care of older group home residents and transition to residential aged care
- Authors:
- BIGBY C., BOWERS B., WEBBER R.
- Journal article citation:
- Journal of Intellectual Disability Research, 55(8), August 2011, pp.777-789.
- Publisher:
- Wiley
Significant increases in life expectancy have led to a growing number of ageing people with intellectual disability. Planning for future care after the death of parental caregivers and adapting support systems to achieve the best possible quality of life for ageing people with intellectual disability are becoming increasingly important. This study examined perceptions held by family members, group home staff and organisational managers about the future of older residents and the decisions about moving to residential aged care. Three sets of interviews over a period of 18 months were conducted with a family member, house supervisor and the programme manager for each of seventeen older group home residents in Victoria, Australia. For the eight people for whom it was decided a move was necessary, and the six who eventually moved, questions focussed on the decision-making process. While plans for lifelong accommodation in a group home proved unfounded, key person succession plans were effective. However, decisions to move on to residential aged care were often made in haste and seen as a fait accompli by involved family members. The authors conclude that although family members take seriously their mandate to oversee well-being of their older relative, they have little knowledge about their rights or avenues to safeguard untimely or inappropriate decisions being made by professionals.
Learning disability and dementia: a training guide for staff
- Authors:
- KERR Diane, WILSON Claire
- Publisher:
- University of Stirling. Dementia Services Development Centre
- Publication year:
- 2002
- Pagination:
- 103p.,bibliogs.
- Place of publication:
- Stirling
This guide is intended for direct care staff who are caring for adults with a learning disability and dementia. Some of these people will be over sixty five but some, mainly with Down's Syndrome will be in their fifties. Staff may be working in a variety of settings where there may have been an emphasis on self determination and independence.