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A systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours
- Authors:
- TOWNSEND-WHITE C., PHAM A.N.T., VASSOS M.V.
- Journal article citation:
- Journal of Intellectual Disability Research, 56(3), March 2012, pp.270-284.
- Publisher:
- Wiley
Six of the twenty-four quality of life instruments identified, were considered to be psychometrically sound and were assessed against 24 criteria developed from the consumer outcome measurement literature. None of the instruments were specifically developed for use with people with intellectual disability. One scale, the Multifaceted Lifestyle Satisfaction Scale, performed well in most respects but suffered from a lack of replication; a criticism applied to all of the instruments studied in detail. The need for further development and validation of quality of life measures for use with people who display challenging behaviour, or have intellectual disabilities, is emphasised.
Application of the Rasch rating scale model to the assessment of quality of life of persons with intellectual disability
- Authors:
- GOMEZ Laura E., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 37(2), June 2012, pp.141-150.
- Publisher:
- Taylor and Francis
Individual quality of life is a concept referring to core domains influenced by personal characteristics and environmental factors, and has received increasing attention in the field of intellectual disability. This study aimed to test and improve the psychometric properties of the INTEGRAL quality of life scale (a questionnaire to measure quality of life for adults with intellectual disability), including the observed fit of data to the Rasch model. The research involved a sample of 271 adults from provinces across Spain who had intellectual disability and used social services, and questionnaires were completed by qualified interviewers. The article describes and discusses the methodology, data analysis and results.
Relationship between self-report and proxy ratings on assessed personal quality of life-related outcomes
- Authors:
- CLAES Claudia, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(3), September 2012, pp.159-165.
- Publisher:
- Wiley
Assessing the quality of life (QoL) of a person with intellectual disabilities is often complicated by their limited verbal abilities. Assessment processes often have to rely on informants such as a family member or support worker. This article reports on 2 studies which aimed to evaluate the impact of self-report vs. proxy ratings in the assessment of QoL scores. Study 1 aimed to evaluate the consistency between self-report and direct observation data by support staff. The participants were 161 individuals with mild or moderate levels of intellectual functioning. Study 2 aimed to evaluate the difference between self-report and proxy ratings using direct observation interviews with family and support staff. The participants were 42 individuals with a mild level of intellectual disability. Both studies involved the use of the self-report and the direct observation forms of the Personal Outcomes Scale. Study 1 found significant differences between the 2 respondent groups in 3 QoL domains and an acceptable level of internal consistency for both self-report and direct observation strategies. Study 2 found some differences between client and staff ratings but no significant differences between client and family ratings. The article concludes with noting the need for methodological pluralism in QoL assessment, the importance of self-report by persons with intellectual disability, and the need to develop better strategies to evaluate QoL outcomes for those individuals who cannot respond for themselves.
A skill for the people – a service for the community – good for the environment
- Author:
- WARNER Karen
- Journal article citation:
- Llais, 103, Summer 2012, pp.16-18.
- Publisher:
- Learning Disability Wales
DRIVE is a voluntary organisation in Rhondda Cynon Taf providing supported living and day service opportunities for people with a learning disability in a social enterprise setting. Having run a horticultural project for 25 years at Pontyclun, they have recently been creative and innovative in getting funding to provide a new food composting service for local primary schools in the area. This article talks to the project manager and members of DRIVE’s Future Skills Project to explore how the food composting service is progressing, and what clients views of the service are.
Healthy lifestyles for adults with intellectual disability: Knowledge, barriers, and facilitators
- Authors:
- CATON Sue, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 37(3), September 2012, pp.248-259.
- Publisher:
- Taylor and Francis
People with intellectual disability (ID) are more likely to have health problems than people without. However, little research has investigated health from the perspective of the people with ID themselves. This qualitative study investigated what people with ID understand being healthy to mean, and what their experiences are of healthy lifestyles. Interviews were conducted with 13 adults in Wales to ask them about their health and healthy lifestyles. Findings revealed that interviewees had an understanding of what it meant to be healthy, have a healthy diet, the dangers of substance misuse, and the benefits of exercise. They also demonstrated some knowledge about rationales for engaging in healthy behaviours. Findings suggested that people with ID demonstrate some understanding of the consequences of unhealthy behaviours, and of the need for moderation.
Learning disability today
- Author:
- CARNABY Steven
- Publisher:
- Pavilion
- Publication year:
- 2012
- Pagination:
- 220p.
- Place of publication:
- Eynsham
- Edition:
- 3rd ed.
This book examines the current issues of those using and delivering services and support for people with a learning disability. The book strives to renew and extend the enthusiasm of the previous editions in the face of an ever-changing landscape of policy and provision. Many of the chapter themes reflect the learning outcomes of the QCF learning disability qualifications introduced in 2011. Personalised services, quality of life and inclusion for all and key issues are covered in this new edition. Topics include: legislative frameworks person-centred thinking: implementing person-centred approaches in health and social care self-directed support and personalisation intimate lives: sexuality and people with learning disabilities family matters: working with parents with learning disabilities.
Life support: the difference between a daily existence and a fulfilling life
- Author:
- UNITED RESPONSE
- Publisher:
- United Response
- Publication year:
- 2012
- Pagination:
- 15p.
- Place of publication:
- London
The Campaigns Panel is an informal network of people with disabilities or mental health needs who are supported by United Response as well as their relatives. This report has been produced by members of the Campaign Panel who have a learning disability and support need, or are relatives to someone who has. The report explores what good support means to people with learning disabilities and why it is crucial that any reforms to social care lead to better quality support. The participants were asked about what support meant to them, what they liked to do in life, what their views were, and what their thoughts were on the future. The report is illustrated throughout with quotes and visual images.
Developing wellbeing as a critical tool in social work education: an example from the field of learning disability
- Author:
- SIMPSON Graeme
- Journal article citation:
- Social Work Education (The International Journal), 31(5), 2012, pp.622-636.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
The paper explores the use of ‘wellbeing’ in social work education, focusing on the personalisation agenda in relation to people with moderate to severe learning disabilities. First, the policy framework for people with a learning disability in England is analysed through a discussion of ‘normalisation’ and the ‘social model of disability’. There follows a brief thematic analysis of these policies and also those of social work education, identifying the relative absence of wellbeing. The paper develops arguments for including wellbeing in social work education. It proposes a teaching model developed around 3 themes: relationships and friendships; community engagement (including education, work and health); and structural context. The importance for social workers of exploring aspects of community, in its widest sense, is emphasised, contrasting with a narrower view presented in policy implementation. It argues that, through a focus upon wellbeing, practitioners and students can develop a more critical engagement with the current narrow focus of the personalisation agenda, whilst promoting the needs of this service user group. The application of wellbeing as a practice and analytical concept therefore provides a framework for a critically reflective and engaged practice.
In celebration: living a life through Positive Behaviour Support
- Author:
- SHEPHARD John
- Journal article citation:
- Tizard Learning Disability Review, 17(2), 2012, pp.69-75.
- Publisher:
- Emerald
Positive Behaviour Support (PBS) has become an established model of intervention for people with learning disabilities and challenging needs. This paper provides a narrative account of one person's experience of PBS. The individual, David, is on the autistic spectrum, has severe learning disabilities, major communication deficits, and some long-established challenging needs. Following a move to residential care at the age of 19, David experienced a series of re-locations, from one service to another, under different regimes of care, and of variable quality. The impact of this was that David became increasingly distressed and his behaviour became more extreme. In November 2009, David’s care was enlisted to a service provider committed to the principals of PBS. The decision was made for David to live alone, and a property was found available to lease. Responsibility for founding the new service was given to a skilled manager who was committed to PBS and well-versed in person-centred approaches. The paper describes the improvements to David’s quality of life following these changes to his care. The purpose of this paper is celebratory, rather than analytic. It presents a human story of a life being lived and attempts to capture the virtues of its ordinariness.
How personalised technology can be used to benefit quality of life for people with learning disabilities who have multiple and complex needs
- Author:
- FRY Suzanne
- Journal article citation:
- Journal of Assistive Technologies, 6(1), 2012, pp.81-85.
- Publisher:
- Emerald
People with profound and multiple disabilities require higher levels of support in all aspects of daily life due to the complexity of their conditions. However, the uniqueness of each individual presents service providers with the challenge of how best to support them. This paper demonstrates how personalised technology can be adapted and used as a tool to benefit the quality of life for people with learning disabilities who have multiple and complex needs. Specifically, it describes the work at Clementi Court, a residential care home dedicated to supporting people with profound and multiple disabilities, run by the charity Hft. Three case studies are described to illustrate how the introduction of personalised technologies was able to make of positive impact on each individual’s life by enabling them to take more control over their environment.