Operationalisation of quality of life for adults with severe disabilities

Gómez, Laura E.; Martínez, Benito Arias; Verdugo, Miguel Á.; Tassé, Marc J.; Brown, Ivan

doi:10.1111/jir.12204

Cited by 29 publications

(24 citation statements)

References 49 publications

(61 reference statements)

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“…Undervaluing these items might lead to a broader discussion of whether the definitions of QoL dimensions and indicators are adequate for the whole spectrum of individuals with ID. A suitable answer to this question has been discussed in previous studies (Ouellette-Kuntz & McCreary 1996;Petry et al 2007;Gómez et al 2015), and we suggest that future studies on QoL scales carefully consider the different levels of severity in the populations examined. The existence of scales for persons with profound ID is well accepted; however, establishing scales for all the levels of ID may be a challenging task.…”

Section: Discussionmentioning

confidence: 83%

“…; Gómez et al . ), and we suggest that future studies on QoL scales carefully consider the different levels of severity in the populations examined. The existence of scales for persons with profound ID is well accepted; however, establishing scales for all the levels of ID may be a challenging task.…”

Section: Discussionmentioning

confidence: 95%

“…Another relevant work is that of Gómez et al . (), who elaborated a series of QoL indicators for persons with severe ID based on the QoL model of Schalock & Verdugo (). Moreover, specific scales and procedures have been developed with a focus on persons with severe or profound ID (Ross & Oliver ; Lyons ; Petry et al .…”

Section: Introductionmentioning

confidence: 99%

“…This shortcoming has been addressed, for example, in the conceptualisation and measurement of QoL for people with severe ID proposed by Ouellette-Kuntz & McCreary (1996) and the work of Petry et al (2007), who showed the utility of the five-domain QoL model by Felce & Perry (1995) for persons with profound ID. Another relevant work is that of Gómez et al (2015), who elaborated a series of QoL indicators for persons with severe ID based on the QoL model of Schalock & Verdugo (2002). Moreover, specific scales and procedures have been developed with a focus on persons with severe or profound ID (Ross & Oliver 2003;Lyons 2005;Petry et al 2009;Vos et al 2010;Verdugo et al 2014).…”

Section: Introductionmentioning

confidence: 99%

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Impact of the intellectual disability severity in the Spanish Personal Outcomes Scale

Carbó‐Carreté

Guàrdia‐Olmos

Peró‐Cebollero

et al. 2019

J intellect Disabil Res

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Background The interest in measuring quality of life (QoL) in persons with intellectual disability (ID) has brought about a number of QoL measurements for this population. These measurements need to address two issues that have contributed to enhancing the current instruments. First, the necessity to develop measures with adequate psychometric properties, which has been discussed in recent studies, and second, the agreement between experts in analysing objective and subjective perspectives, as well as the use of self‐report to include the participation of the person with ID. The question that we set out to investigate in this paper is whether the measurements function properly for the person with ID, independent of their level of severity. We used the Spanish version of the Personal Outcomes Scale, as it is a psychometrically sound instrument and includes three sources of information (the person with ID, a professional and a family member). Method The sample was composed of 529 persons with ID (296 men, representing 55.95% of the total sample, and 233 women, with Mage = 35.03, SD = 10.82) from several regions of Spain, along with their professional of reference and a family member. The severity variable was estimated for each item based on estimations of differential item functioning. Results The results showed that several items were undervalued by the assessments if the severity of the ID was greater. Mainly, this difference was observed in the assessments by professionals and in the dimensions of rights, personal development and self‐determination. Conclusions This paper focuses on the uses and interpretations of the results of the QoL measurements in the Personal Outcomes Scale. The results indicate that, in our sample, when people with high levels of ID are assessed, the functioning of some items are affected by the severity of this disability. For correct use, these items must be interpreted on the basis of the results obtained. Additionally, it is necessary to thoroughly review the QoL indicators for persons with severe or profound ID.

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Section: Discussionmentioning

confidence: 83%

Section: Discussionmentioning

confidence: 95%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Impact of the intellectual disability severity in the Spanish Personal Outcomes Scale

Carbó‐Carreté

Guàrdia‐Olmos

Peró‐Cebollero

et al. 2019

J intellect Disabil Res

View full text Add to dashboard Cite

show abstract

“…For an overview of domains, see Table 2. These several combinations of domains were operationalised in items (Bigby et al, 2014;Gómez, Arias, Verdugo, Tassé, & Brown, 2015;Petry, Maes, & Vlaskamp, 2005, 2007a, and twice a Delphi round was used (Gómez et al, 2015;Petry, Maes, & Vlaskamp, 2007a). In addition, in the article of Petry et al (2005), the basic domains of Felce and Perry (1995) were described as valid and relevant for people with PIMD, which may refer to the third SIRG QoL statement that QoL has the same components for all people.…”

Section: Which Concepts Of Qol Are Used?mentioning

confidence: 99%

Quality of life of persons with profound intellectual and multiple disabilities: A narrative literature review of concepts, assessment methods and assessors

Nieuwenhuijse

Willems

Goudoever

et al. 2017

Journal of Intellectual & Developmental Disability

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Background: The objective of this study was to provide an overview of concepts, methods of assessment and assessors in empirical studies on quality of life (QoL) of persons with Profound Intellectual and Multiple Disabilities (PIMD). Method: A narrative literature review was conducted by searching electronic databases until December 2016, and the included studies were then analysed thematically. Results: Twenty-one articles were included in the analysis. Multidimensional concepts of QoL consisting of both subjective and objective components were found, although the articles used different distinctions for each. QoL was assessed by behavioural observations or interviews/ questionnaires. Family members, primary caregivers and more distant observers (or a combination of these three) determined QoL. Triangulation of assessors and methodological pluralism were used. Conclusions: This review highlighted several components of QoL in persons with PIMD, as well as challenges in researching the QoL of persons who are not able to express themselves verbally. The distinction between objective and subjective QoL was difficult to clarify, with interpretation being both inevitable and necessary. Although triangulation is seen to be good practice in QoL assessment, the role of proxies in assessing the QoL of persons with PIMD needs further investigation.

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