An Initial Evaluation of the Comprehensive Quality of Life Scale‐‐Intellectual Disability

Cummins, Robert A.; McCabe, Marita P.; Romeo, Yolanda; Reid, Shelley B.; Waters, Lea

doi:10.1080/0156655970440102

Cited by 133 publications

(180 citation statements)

References 20 publications

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“…In Vreeke et al [10], Resnick et al [33] and in Janssen et al [6] as well as in the present study this so-called measurement by proxy occurred in 90% of the cases. In this population proxy responding is inevitable and consonant with other studies measuring QOL [6,14,32,34,35]. The 90% rate might be higher than in other studies because of the lower level of functioning of the samples.…”

Section: The Proxy Problemsupporting

confidence: 65%

Perspectives on quality of life of people with intellectual disabilities: The interpretation of discrepancies between clients and caregivers

2005

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Large discrepancies have sometimes been found between the quality of life (QOL) experienced by clients with intellectual disabilities and their QOL as described by their caregivers. Olsen and Schober (Soc Indi Res 1993; 28: 173-193) may have provided a framework useful to conceptualize such discrepancies. They suggested that lack of concordance between objective circumstances (i.e. poverty) and perceived QOL must not be treated as measurement noise, but as a source of information. They speculated on the psychological processes that underly and explain this lack of concordance; particularly processes that try to deal with the stress induced by cognitive dissonance and learned helplessness.In this study low to moderate agreement was found between caregivers judgement of QOL of individual clients and clients' own perception of QOL. In some areas and for some clients the discrepancies indicated dissonance (caregivers are satisfied, clients are not) and in other areas and for other clients adaptation (clients are satisfied, caregivers are not). There were systematic differences between clients falling in these groups with respect to their personal characteristics and with respect to factual conditions of care. These outcomes are interpreted with respect to Olson and Schober's contentions regarding the psychological processes that underly a person's experience of QOL. The Olson and Schober framework appears to be a fruitful way to combine different sources of information regarding QOL.

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Section: The Proxy Problemsupporting

confidence: 65%

Perspectives on quality of life of people with intellectual disabilities: The interpretation of discrepancies between clients and caregivers

2005

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“…The mean scores for objective QoL of the parents and the adolescents were significantly lower than the mean (71.8) found in a norm group of adults from all major geographic regions (Cummins, 1997;1998).…”

Section: Resultsmentioning

confidence: 77%

“…QoL were compared with the "gold-standard" population averages in Western societies (Cummins, 1997;1998). The mean score for Quality of Life 17 the subjective QoL of the parents was within the normal range between 70 and 80.…”

Section: Resultsmentioning

confidence: 99%

“…Therefore we chose to use quality of life as the outcome measure in this study. In international literature, consensus prevails that quality of life is a universal, multidimensional concept containing both an objective and a subjective component (Cummins, 1997;Schalock et al, 2002;Schalock & Felce, 2004 In sum, the purpose of this study is to test whether the effect of the pile-up of demands associated with a disability on quality of life is mediated by resilience, quantity and quality of social support for adolescents with a disability and their parents. Based on previous research we expect the quality of life of adolescents with a disability and their parents to be lower than the population average, especially on the objective dimension (Cummins, 2005;Sands & Kozleski, 1994).…”

Section: Parents: the Mediating Role Of Social Support And Resiliencementioning

confidence: 99%

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Quality of Life in Adolescents with a Disability and Their Parents: The Mediating Role of Social Support and Resilience

et al. 2012

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The aim of this study was to test whether the effect of the pile-up of demands associated with a disability on quality of One of the core notions in the systemic approach is that families form an interactive and interdependent system where what happens to one family member will also affect all the other members of the system (Goldenberg & Goldenberg, 2003;Turnbull & Turnbull, 2001). The disability of a child is such an event that will affect the whole family. Compared to families with typically developing children, a child with a disability poses specific challenges. A multitude of adverse effects of a disability on the family have been found, including higher levels of stress, lower well-being, more negative feelings on parenting, less marital satisfaction, a financial and a caretaker burden (Baker, Blacher, & Olsson, 2005;Blacher & McIntyre, 2006;Hatton & Emerson, 2003;Hunfeld et al., 2001;Maes, Broekman, Dosen, & Nauts, 2003;McIntyre, Blacher, & Baker, 2002;Wilkinson et al., 2001).However, research in families with a child with a disability is inconclusive regarding the impact of the disability on the family. Other studies in families of children with a disability recognize the positive effects these children can have on their family members, including better parent-child interactions, more family cohesion and a stronger life purpose Quality of Life 4 (Flaherty & Glidden, 2000;Glidden, Bamberger, Turek, & Hill, 2010;Green, 2007; Hastings & Taunt, 2002;Kearney & Griffin, 2001;Taanila, Jarvelin, & Kokkonen, 1999). Thus some families seem to do well despite the extra stressor of the disability of their child, while others struggle and succumb.There is a large body of literature suggesting several individual and family characteristics that are positively related to the family's adaptation to a child with a disability. Social support, resilience, good family cohesion, effective coping skills and positive cognitive appraisals might all influence the potential negative impact of the disability on the family (Lavee, Hamilton, & Patterson, 1985;Saloviita, Itälinna, & Leinonen, 2003;Taanila et al., 1999;Tak & McCubbin, 2002).It has become apparent that individual and family outcomes due to the impact of a pile-up of demands associated with living with a disability are the result of multiple factors interacting with each other. Therefore a multivariate model incorporating both psychological and social variables that could intervene between the stressor and the outcome is needed. The double ABCX model of McCubbin and Patterson (1983) is one of the most influential theoretical frameworks in this field. The model provides a theoretical basis for examining the effect of a stressor and pile-up of demands (factor aA) on the family adaptation (factor XX) through the Quality of Life 5 mediation of the existing and expanding family recourses (factor bB), the meaning the family assigns to their situation (factor cC), and the coping strategies employed by the family (factor BC) (Jacques, 2006;McCubbin & Patterson, 1983), w...

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“…77 This instrument assesses quality of life via ratings of the importance of and satisfaction with different life domains. However, these ratings are preceded by a set of exercises to assess the respondent's ability to use simple rating scales and the ability to order quantities using a Likert-type scale.…”

Section: Baseline Measuresmentioning

confidence: 99%

A cluster randomised controlled trial of a manualised cognitive behavioural anger management intervention delivered by supervised lay therapists to people with intellectual disabilities

Willner

Rose²,

Jahoda³

et al. 2013

Health Technol Assess

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This report should be referenced as follows:Willner P, Rose J, Jahoda A, Stenfert Kroese B, Felce D, MacMahon P, et al. A cluster randomised controlled trial of a manualised cognitive-behavioural anger management intervention delivered by supervised lay therapists to people with intellectual disabilities. Health Technol Assess 2013;17(21). This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/). Health Technology Assessment is indexed and abstracted inEditorial contact: nihredit@southampton.ac.ukThe full HTA archive is freely available to view online at www.journalslibrary.nihr.ac.uk/hta. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Health Technology Assessment journalReports are published in Health Technology Assessment (HTA) if (1) they have resulted from work for the HTA programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors.Reviews in Health Technology Assessment are termed 'systematic' when the account of the search appraisal and synthesis methods (to minimise biases and random errors) would, in theory, permit the replication of the review by others. HTA programmeThe HTA programme, part of the National Institute for Health Research (NIHR), was set up in 1993. It produces high-quality research information on the effectiveness, costs and broader impact of health technologies for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined as all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care.The journal is indexed in NHS Evidence via its abstracts included in MEDLINE and its Technology Assessment Reports inform National Institute for Health and Care Excellence (NICE) guidance. HTA research is also an important source of evidence for National Screening Committee (NSC) policy decisions.For more information about the HTA programme please visit the website: www.hta.ac.uk/ This reportThe research reported in this issue of the journal was funded by the HTA programme as project number 08/53/34. The contractual start date was in May 2009. The draft report began editorial review in May 2012 and was accepted for publication in August 2012. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HTA editors and publisher have tried to ensure the accuracy of the authors' report and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this report.This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the ...

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An Initial Evaluation of the Comprehensive Quality of Life Scale‐‐Intellectual Disability

Cited by 133 publications

References 20 publications

Perspectives on quality of life of people with intellectual disabilities: The interpretation of discrepancies between clients and caregivers

Perspectives on quality of life of people with intellectual disabilities: The interpretation of discrepancies between clients and caregivers

Quality of Life in Adolescents with a Disability and Their Parents: The Mediating Role of Social Support and Resilience

A cluster randomised controlled trial of a manualised cognitive behavioural anger management intervention delivered by supervised lay therapists to people with intellectual disabilities

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