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Journal article

Architects of reform

Author:
KAEHNE Axel
Journal article citation:
Learning Disability Today, 9(5), July 2009, pp.34-36.
Publisher:
Pavilion
Place of publication:
Hove

Highlights the key themes from a series of research papers delivered at a round table summit involving academics and practitioners from the US, UK, Netherlands, Germany and Australia looking at what really improves lives for people with learning disabilities.

Book

Making connections: reflecting on the lives and experiences of people with learning difficulties; a reader

Editors:
BRECHIN Ann, WALMSLEY Jan
Publisher:
Hodder & Stoughton
Publication year:
1989
Pagination:
289p., bibliog.
Place of publication:
London

A collection of readings exploring the experiences of people with learning difficulties, reflecting a variety of approaches from an individual to a social level.

Book

An ordinary day

Author:
DOWSON Steve
Publisher:
Campaign for Mental Health
Publication year:
1988
Pagination:
44p., bibliog.
Place of publication:
London

A report based on accounts sent in to CMH of what people with learning difficulties did on the 20th April 1988.

BookDigital Media

Effective systems to support people with learning disabilities: strategic briefing

Author:
GREIG Rob
Publisher:
Research in Practice for Adults
Publication year:
2017
Place of publication:
Totnes

People with learning disabilities or autism have consistently poorer outcomes in areas such as health, life expectancy and quality of life. This includes their access to paid employment, housing, friendship and social networks. Social care support can help to enable people to address the inequalities they face as a result of learning disabilities. This Strategic Briefing talks through policy, evidence and practice to help leaders' plan social care systems to even out these inequalities so that people with learning disabilities can live good lives. It is aimed at senior decision-makers working across Adults’ Services. (Edited publisher abstract)

Journal article

The close relationships of people with intellectual disabilities: a qualitative study

Authors:
SULLIVAN Faye, et al
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 29(2), 2016, p.172–184.
Publisher:
Wiley-Blackwell

Background: Positive interpersonal relationships have been found to enhance an individual's quality of life. However, people with intellectual disabilities (PWID) often have restricted social networks, and little is known about their views on close social relationships. The study aimed to explore how this group perceives and experiences close relationships. Materials and Methods: Ten (6 = men 4 = women) PWID participated. Data were collected using semi-structured interviews, and analysed using interpretive phenomenological analysis. Results: The results report on three of five themes drawn from a larger qualitative study: ‘Relationships feeling safe and being useful’; ‘Who's in charge?’ and ‘Struggling for an ordinary life’. Conclusions: Close relationships are valued and desired by PWID, but a variety of barriers inhibit their development and maintenance. This includes the failure of others to value, accept and appropriately support the independence and relationships of PWID. Potential ways of addressing these issues are discussed. (Publisher abstract)

Journal article

‘Everybody just thinks I'm weird’: a qualitative exploration of the psychosocial experiences of adolescents with Tourette syndrome

Authors:
WADMAN R., TISCHLER Victoria, JACKSON G.M.
Journal article citation:
Child: Care, Health and Development, 39(6), 2013, pp.880-886.
Publisher:
Wiley-Blackwell

Background: Research suggests Tourette syndrome (TS) can have a negative impact on quality of life. To date, little research has examined the perspectives of young people with this condition in depth. Methods: Six 14- to 16-year-olds with TS took part in semi-structured interviews to explore the perceived impact of this condition on self and on relationships with others. The transcripts were analysed using interpretative phenomenological analysis. Results: The young people felt that TS was a constant presence in their lives, but one they have learnt to cope with well. Most had developed supportive friendships but encountered problems when interacting with the wider peer network. Specific concerns around meeting new people and future employment were voiced. Conclusions: The adolescents described specific ways in which TS affects quality of life and social interactions, and the effort it can take to cope effectively with this condition. (Publisher abstract)

Journal article

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.

Journal article

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:
Informa Healthcare

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.

Journal article

Deinstitutionalization and quality of life of individuals with intellectual disability: a review of the international literature

Authors:
CHOWDHURY Monali, BENSON Betsey A.
Journal article citation:
Journal of Policy and Practice in Intellectual Disabilities, 8(4), December 2011, pp.256-265.
Publisher:
Wiley-Blackwell

Deinstitutionalisation of individuals with intellectual disabilities is based on the idea that quality of life (QOL) will improve after being moved from institutions to community-based care settings. This international review investigated whether this assumption has become a reality now that the policy of deinstitutionalisation has progressed in many countries. Fifteen studies were examined that assessed QOL as an outcome of community living following deinstitutionalisation. Findings suggested that relocation had a general positive impact on life quality of participants. However, many of the studies found that improvements were most prominent shortly after the move. Participants continued to have low levels of community integration, and there was evidence that healthcare needs were not adequately met in the community. The role of service providers was indicated as vital in the continued development of participants' life quality. The authors concluded that additional research is required to identify the factors that are critical in improving QOL in community-based care.

Journal article

Initial validation of the Chinese Quality of Life Questionnaire – Intellectual Disabilities (CQOL-ID): a cultural perspective

Authors:
WONG P. K. S., et al
Journal article citation:
Journal of Intellectual Disability Research, 55(6), June 2011, pp.572-580.
Publisher:
Wiley

There is a lack of locally validated appropriate instruments to measure the quality of life of Chinese people with ID. This study reports an attempt to validate the Chinese Quality of Life Questionnaire – Intellectual Disabilities which was adapted from the Quality of Life Questionnaire developed by Schalock & Keith. A total of 359 participants with mild/moderate ID aged 15 years or more were recruited from special schools, skills centres, community service units and residential units in different regions of Hong Kong. Factor analysis was conducted according to the rotated component matrix method, in which 23 items were extracted from the original 40-item version of the Quality of Life Questionnaire and three domains (renamed satisfaction, competence and daily choice making/interpersonal relations) were observed. Construct validity tests indicated a positive relationship with earnings, and self-determination and social interaction increased with more independent living and less segregated work environments. The scale achieved a good degree of reliability. These findings suggest that the Chinese Quality of Life Questionnaire – Intellectual Disabilities instrument may be of value for measuring the quality of life of Chinese people with ID. Cultural issues are discussed and recommendations for future research and service development are made.

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