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Discerning the appropriate role and status of Quality of Life assessment for persons with intellectual disability: a reply to Cummins
- Authors:
- AGER Alastair, HATTON Chris
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 12(4), 1999, pp.335-339.
- Publisher:
- Wiley
Identifies three major issues arising from Cummings' (1997) review of quality of life (QOL) assessment for persons with intellectual disability. First, Cummins' analysis of pre-existing measures relevant to the analysis of QOL is argued to be inadequate. Second, the relationship between 'objective' and 'subjective' measures of life experience is proposed to be more complex than that implied by the earlier review. Third, discussion of the appropriate role and status of attempts to measure QOL indicates such measurement may be more empowering of service providers than service users.
Learning difficulties
- Author:
- WARD Linda
- Journal article citation:
- Research Matters, 1999, pp.28-30.
- Publisher:
- Community Care
Asks how people with learning difficulties can be empowered to live "ordinary lives". Looks at some answers to this question that may be found in the USA, the country that has led the way.
The nature of quality of life: a conceptual model to inform assessment
- Author:
- ALBORZ Alison
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 14(1), 2017, pp.15-30.
- Publisher:
- Wiley
The phenomenon of quality of life (QoL) has been subject to ongoing debate and many models have been proposed. Over the latter half of the 20th century, QoL models have proliferated, particularly in relation to the population with intellectual disabilities (ID) which have arguably improved living conditions and helped to guard against abuse. While this is a complex phenomenon, there is agreement across a wide literature that QoL has two distinct aspects relating to the individual (whether disabled or not) and the resources necessary for a “good” QoL. Considerable support is also provided for a number of diverse but robust domains. However, how the “nature” of QoL is conceptualized is unclear. The article reviews multidisciplinary research on QoL and goes on to present a theoretical model of the nature of QoL that encompasses identified domains. The model is based on Maslow's hierarchy of needs (1987) which defines its scope; Sen's Capability Approach (1985), which elaborates the resource context impacting QoL; and Ryan and Deci's Self-Determination Theory (2000), which describes person-context interactions important to personally valued QoL. This conceptualization was framed within four facets—Foundational well-being; Psychosocial well-being; Status; and Autonomy—each of which have two aspects: “individual,” describing personal needs that, when fulfilled, are associated with better QoL, and “context,” describing resources necessary to enable individual need fulfilment. The proposed QoL model demonstrates an intellectually lucid structure supported by literature. It does not attempt a definitive specification of all QoL constituents but proposes that delineation must be determined within the particular circumstances of a proposed assessment. Once determined, an exploratory approach to assessment is proposed. It is suggested this model represents a useful “atlas” on the nature of QoL to guide development of assessments aiming to inform service developments or interventions. (Publisher abstract)
Caregivers as managers of subjective wellbeing: a homeostatic perspective
- Author:
- CUMMINS Robert A.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 18(4), December 2005, pp.335-344.
- Publisher:
- Wiley
This paper proposes that the adequacy of service delivery and caregiving to people who are disabled should be assessed using two criteria. One is the objective circumstance of living, which should be at a standard acceptable to the community at large. The other is a level of subjective wellbeing (SWB) within the normal range. This latter criterion is based on an understanding that SWB is homeostatically managed to lie normally within a narrow range of values. Results found that people who have a disability are more likely than usual to have a fragile homeostatic system because of the additional life challenges imposed by their disability. It concludes that the role of a caregiver is to provide resources and protection against strong threats to homeostasis, thereby ensuring that the person in their care has a normal-range level of SWB.
Let them speak
- Author:
- BOND Henrietta
- Journal article citation:
- Community Care, 17.8.00, 2000, pp.20-21.
- Publisher:
- Reed Business Information
The quality of life of people with learning difficulties could be improved by extending their right to make choices, says a recent report. This article reports on some projects in which workers use new skills to help clients communicate.
Factor analysis of the Schalock & Keith (1993) Quality of Life questionnaire: a replication
- Authors:
- RAPLEY Mark, LOBLEY John
- Journal article citation:
- Mental Handicap Research, 8(3), 1995, pp.194-202.
- Publisher:
- BIMH Publications
The quality of life of people with learning disabilities has become a topic of much concern to academics, policy makers, human service providers and evaluators. As yet there has been little progress towards the goal of developing an instrument which adequately reflects the subjective quality of life perceptions of people with learning disabilities. To assist in the development of a psychometrically sound and internationally acceptable quality of life measure, factor analyses of the Schalock & Keith (1993) 'Quality of Life' questionnaire were undertaken with a British sample. Discrepancies between the factor solution reported in the questionnaire 'Standardisation Manual' (Schalock, Keith & Hoffman, 1990) and that obtained for the UK sample are reported. Concludes that the 'Quality of Life' questionnaire shows broad cross-cultural comparability.
Personalised technology in practice - how a national charity is using and developing personalised technology to empower people with learning disabilities and to increase their independence
- Author:
- -
- Journal article citation:
- Journal of Assistive Technologies, 4(3), September 2010, pp.64-68.
- Publisher:
- Emerald
This article focuses on how Hft, a national charity for people with learning disabilities, is using and developing personalised technology to empower people with learning disabilities and to increase their independence. It showcases how Hft is using personalised technology in practice and creating awareness of how it can be used to support independence, safety and security. Two individual case studies are provided which illustrate the effective use of technology by people with learning disabilities to increase their independence. The article argues that technology must maintain and enhance quality of life, consistent with the principles of social inclusion, and must also improve efficiencies leading to increased value for money and organisational growth. It highlights the need for investment and development in technology to support the growing number of dependent people and stresses the importance of ethical guidance to ensure that the technology is implemented correctly to enable people with learning disabilities to gain the maximum benefits.
Initial findings on the involvement of people with an intellectual disability in interviewing their peers about quality of life
- Authors:
- P[ERRY Jonathan, FELCE David
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 29(2), June 2004, pp.164-171.
- Publisher:
- Taylor and Francis
There are relatively few examples of emancipatory research in which people with an intellectual disability become co-workers in the research process. The current study examined the feasibility of training someone with an intellectual disability to conduct quality of life interviews with peers. The extent to which response bias in a sample of 21 people with an intellectual disability varied according to whether interviews were conducted by a researcher or a person with an intellectual disability was also investigated. Response bias was found not to be related to the characteristics of the interviewer. Amongst people who responded without bias, responses were not tailored to interviewer characteristics. The study demonstrated that people with an intellectual disability can be trained and supported to be competent data collectors and to hold positions of responsibility in the research process.
Developing new lifestyles with disabled people
- Author:
- JOSEPH ROWNTREE FOUNDATION
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2000
- Pagination:
- 4p.
- Place of publication:
- York
There is growing consensus that daytime opportunities for people with learning difficulties and disabled people need to be improved. People want to work, learn and enjoy a greater variety of leisure interests, spending more time in ordinary community settings with old and new friends. Supporting people to achieve this - in essence, a more ordinary lifestyle - is the challenge for service providers. This project implemented recommendations from the national Changing Days Project about how to improve people's lifestyles. Focusing on people with learning difficulties and disabled people living in four residential homes run by the Joseph Rowntree Housing Trust.
'I always do what they tell me to do': choice-making opportunities in the lives of two older persons with severe learning difficulties living in a community setting
- Authors:
- TREECE Ann, et al
- Journal article citation:
- Disability and Society, 14(6), November 1999, pp.791-804.
- Publisher:
- Taylor and Francis
Presents a case study conducted to document the perceptions of two older adults with severe learning difficulties regarding their quality of life and their experience with choice-making in areas of life they identified as significant to them. Although the participants expressed overall satisfaction with their lives, they were not content with their choice-making opportunities. The findings are discussed in terms of theories proposed in current literature on the subject.