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Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability
- Authors:
- TAGGART Laurence, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 16(3), September 2012, pp.217-234.
- Publisher:
- Sage
- Place of publication:
- London
Due to the increased life expectancy of people with intellectual disability, they are now more likely to be living with an ageing family carer. The aim of this study was to examine the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. A mixed methods design was employed. In stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers aged 60–94 years. In stage 2, 19 in-depth semi-structured interviews were undertaken with a sample of carers to explore a range of issues around future planning. Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. The main preference was for the person to remain in the family home, with either the family or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. Four main themes were identified around future planning: unremitting apprehension; the extent of planning; obstacles encountered; and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking about the future.
Policy and learning disabilities: a Scottish perspective
- Author:
- BROWN Michael
- Journal article citation:
- Advances in Mental Health and Learning Disabilities, 1(1), March 2007, pp.22-25.
- Publisher:
- Emerald
This article outlines the development of legislative and policy frameworks in Scotland with a particular focus following political devolution. The impact of these changes and developments on the lives of people with learning disabilities are discussed.
A systematic review of interventions to promote social support and parenting skills in parents with an intellectual disability
- Authors:
- WILSON S., et al
- Journal article citation:
- Child: Care, Health and Development, 40(1), 2014, pp.7-19.
- Publisher:
- Wiley
The family support needs of parents with an intellectual disability (ID) are relatively unknown. This paper reviewed two types of intervention for parents with ID: those designed to strengthen social relationships and those teaching parenting skills. A literature search was conducted using electronic databases and a limited number of evaluative studies were found. The evidence for interventions aimed at strengthening social relationships was inconclusive; although positive changes were observed, there were limitations in study design which restricted the generalizability of the results. The evidence for parental skills teaching suggested that behavioural based interventions are more effective than less intensive forms such as lesson booklets and the provision of normal services, although these studies also had limitations. There is a need for further large scale controlled studies in this area to provide clearer evidence and to explore additional factors relating to child, parent and family which may impact on outcomes. (Publisher abstract)
For the record: the lived experience of parents with a learning disability – a pilot study examining the Scottish perspective
- Authors:
- MACINTYRE Gillian, STEWART Ailsa
- Journal article citation:
- British Journal of Learning Disabilities, 40(1), March 2012, pp.5-14.
- Publisher:
- Wiley
There are increasing numbers of parents with a learning disability living in the community. Research suggests that this group of parents faces disadvantage on multiple levels relating to poverty, social exclusion and discrimination. This small pilot study aimed to examine the lived experiences of 5 parents with a learning disability, to identify the needs of these parents, and to explore the potential role of advocacy in assisting these parents. The 5 parents had all been referred for advocacy support following the instigation of child protection proceedings. The study adopted a mixed methods approach including: a survey of relevant local organisations; interviews with the 5 parents; interviews with their 5 advocates; and interviews with 4 stakeholders. The findings showed that the parents faced a number of challenges not only in relation to their parenting role but also in the circumstances characterising their lives more generally. Parents were likely to be socially isolated and had limited support networks. Support services did not always meet the needs of parents with a learning disability, and joint working between agencies appeared to be particularly problematic. The study concludes that there is a clear role for advocacy in enabling these parents to have their voices heard.
Respecting diversity: a report from the Mental Welfare Commission's race and culture themed visit programme 2003/04
- Author:
- MENTAL WELFARE COMMISSION FOR SCOTLAND
- Publisher:
- Mental Welfare Commission for Scotland
- Publication year:
- 2004
- Pagination:
- 12p.
- Place of publication:
- Edinburgh
This report comes out of a programme by the Mental Health Commission for Scotland which aimed to find better ways of communicating with service users from black and minority ethnic (BME) communities and to develop awareness of BME issues. During 2003-04 the Commission visited 5 national and 15 local organisations across Scotland with a specific focus on BME issues. This document is based on issues emerging from these visits. The aim of the report is to contribute to awareness and debate of issues affecting BME service users, leading to more culturally appropriate services for individuals. A number of key areas for service development are identified within the report, including: the need for more pro-active mainstreaming of services for BME people with mental disorder; improved access to interpreting services for patients; and more appropriate care settings, especially in relation to single sex accommodation. The report provides examples of good practice, and recommendations for actions for the Commission itself and for the range of providers, inspectorates and other agencies involved in ensuring the quality of mental health and learning disability services.
Supporting parents with learning disabilities and difficulties: stories of positive practice
- Author:
- WORKING TOGETHER WITH PARENTS NETWORK
- Publisher:
- Norah Fry Research Centre
- Publication year:
- 2009
- Pagination:
- 20p.
- Place of publication:
- Bristol
This booklet tells the stories of 6 families headed by a parent or parents with learning disabilities or difficulties who have been enabled, with the right support from professionals, to look after their children and safeguard their welfare. The stories aim to give an insight into the complexities of the real lives of parents with learning disabilities and difficulties, and illustrate the positive impact of professionals who provide appropriate, positive, flexible and coordinated support. The stories show that if parents are given support tailored to their particular learning styles and their family’s needs, they can parent effectively, despite the negative expectations and difficulties they face. The work of the services and staff described in these stories illustrates how the aims and provisions of the Children Act 1989 (for England and Wales ) and the Children Act ( Scotland ) 1995 can be put into practice.
Improving the mental health of people with learning disabilities in Scotland: putting policy into practice
- Authors:
- SIMPSON Neill, WHORISKEY Margaret, McCUE Michael
- Journal article citation:
- Advances in Mental Health and Learning Disabilities, 1(1), March 2007, pp.26-32.
- Publisher:
- Emerald
Service systems for people with learning disabilities in Scotland have developed in the context of the Scottish legal system and devolved policy for health. Scottish organisations are responding to the spectrum of mental health needs by working in partnership to improve quality. This article describes this system and the key organisations, and presents some findings of the National Overview Report of services undertaken by NHS Quality Improvement Scotland.
Learning disability and advocacy: obstacles to client empowerment
- Author:
- JACKSON R.
- Journal article citation:
- Journal of Learning Disabilities for Nursing Health and Social Care, 3(1), March 1999, pp.50-55.
Citizen Advocacy, with its aim to empower, has the potential to transform the lives of people with learning disabilities, but an inevitable consequence of client empowerment is professional disempowerment. Professional workers are unlikely to relinquish power, control and influence without some resistance. This article seeks to show there are a number of ways for statutory agencies to neutralise the effect of citizen advocacy.
Their face to the wind: service developments for older people with learning disabilities in Grampian region
- Authors:
- LAMBE Loretto, HOGG James
- Publisher:
- ENABLE
- Publication year:
- 1995
- Pagination:
- 87p.
- Place of publication:
- Glasgow
Research study based on user and carer views. Looks at residential and day care and at present and future needs.
The visit of the Scottish Health Advisory Service and the Social Work Services Inspectorate to services in East Lothian for adults with learning disabilities: 17 - 21 October 1994
- Author:
- SCOTTISH HEALTH ADVISORY SERVICE
- Publisher:
- Scottish Health Advisory Service
- Publication year:
- 1995
- Pagination:
- 24p.
- Place of publication:
- Edinburgh
Report of an inspection of services for people with learning difficulties which had been transferred from NHS to voluntary sector management.