Laura E. Gómez

The concept of quality of life and its role in enhancing human rights in the field of intellectual disability.

BACKGROUNDnThe changed societal views of persons with disabilities are reflected in the 2006 United Nations Convention on the Rights of Persons with Disabilities. However, what is not specified in the Convention is how to operationalise and measure the Articles composing the Convention, and how to use that information to further enhance the human rights of persons with disabilities.nnnMETHODnThe authors analyse the relationships between eight core quality of life domains and the 34 Articles contained in the Convention.nnnRESULTSnThere is a close relationship between the core quality of life domains and the 34 Articles contained in the Convention. Furthermore, the current status of these Articles can be evaluated through the assessment of indicators associated with the eight core quality of life domains.nnnCONCLUSIONSnBased on the assessment of these quality of life-related outcomes, three strategies can be used to enhance the human rights of persons with intellectual disability. These three are to employ person-centred planning, publish provider profiles and implement a system of support.

Evidence-based practices in the field of intellectual and developmental disabilities: An international consensus approach §

As evidence-based practices become increasingly advocated for and used in the human services field it is important to integrate issues raised by three perspectives on evidence: empirical-analytical, phenomenological-existential, and post-structural. This article presents and discusses an evidence-based conceptual model and measurement framework that integrates these three perspectives and results in: multiple perspectives on evidence-based practices that involve the individual, the organization, and society; and multiple interpretation guidelines related to the quality, robustness, and relevance of the evidence. The article concludes with a discussion of five issues that need to be addressed in the future conceptualization, measurement and application of evidence-based practices. These five are the need to: expand the concepts of internal and external validity, approach evidence-based practices from a systems perspective, integrate the various perspectives regarding evidence-based practices, develop and evaluate evidence-based practices within the context of best practices, and develop a set of guidelines related to the translation of evidence into practice.

Measuring quality of life in people with intellectual and multiple disabilities: validation of the San Martín scale.

Although there are numerous quality of life instruments in the, field of intellectual disability, most of them are addressed to those, people with the highest levels of functioning, while only a few are, suitable for people with the lowest levels (i.e., people with profound, and severe intellectual disabilities, or people with intellectual and, developmental disabilities and other significant medical conditions or, disabilities). This study provides reliability and validity evidence of, the San Martín Scale, a 95-item Likert scale questionnaire that is, completed by a third-party respondent. The validation sample was composed, of 1770 people from Spain with intellectual and developmental, disabilities that showed extensive or pervasive support needs (8.7% had, mild intellectual disability, 28.25% moderate, 41.6% severe, and 21.4%, profound). The age of the participants ranged between 16 and 77 years old, (M=7.78; SD=12.32). The results suggested that the eight quality of, life domains assessed on the scale are reliable (Cronbachs alpha ranging, from .821 to .933). Confirmatory Factor Analyses provided construct, validity evidences related to the internal structure of the San Martín, Scale, and indicated that the eight first-order factor solution provided, the best fit to the data over unidimensional and hierarchical solutions. Implications of these findings and guidelines for further research are, discussed.

Factor structure of the construct of adaptive behavior in children with and without intellectual disability

Although the presence of significant limitations in adaptive behavior constitutes one of the three necessary criteria for diagnosing intellectual disability, adaptive behavior structure has always been the subject of considerable controversy among researchers. The main goal of this study is to extend previous research results that provide further support to a multidimensional structure of conceptual, social, and practical skills compared to the unidimensional structure. One-factor and 3-correlated factors models as measured by 15 observable indicators were analyzed by means of confirmatory factor analysis (CFA), as well as their relationships with one second-order factor (i.e., adaptive behavior). To that end, 388 children with and without intellectual disabilities were assessed with the Diagnostic Adaptive Behavior Scale (DABS). Results of CFA indicated that the 3 first-order factors solution provides the best fit to the data. Reliability and validity of the multidimensional model were also analyzed through different methods such as the composite reliability and the average variance extracted. Finally, implications of these findings and possible directions for future research are discussed.

Moving Us Toward a Theory of Individual Quality of Life

This article discusses three steps involved in moving us toward a theory of individual quality of life: developing a conceptual model, integrating theory components, and applying and evaluating the theory. Each of the proposed steps is guided by established standards regarding theory development and use. The article concludes with a discussion of criteria that can be used to evaluate the theory and the contribution that a theory of individual quality of life would make to the field of disability.

The development and use of Provider Profiles at the organizational and systems level

While the use of quality of life-related personal outcomes has been broadly reported during the last decade, little attention has been paid to the use of such data as a basis for developing and using Provider Profiles at the organizational and systems level. This article illustrates a way in which these evidence-based outcomes may be used not only to improve clinical decisions, but also managerial and policy strategies. To that end, the quality of life of 11,624 social service recipients was assessed by means of the application of the GENCAT Scale, a questionnaire to assess quality of life according to the eight-domain model (Schalock & Verdugo, 2002). Data were analyzed at organizational and the systems level in order to develop Provider Profiles. Once implemented, these profiles can be used to compare individuals in different diagnostic groups, develop province-level performance standards, encourage continuous program improvement, and guide the development of evidence-based policies.

Validity and reliability of the INICO-FEAPS Scale: An assessment of quality of life for people with intellectual and developmental disabilities.

This paper documents the validation of a comprehensive scale designed to assess quality-of-life related personal outcomes for people with intellectual and developmental disabilities who receive support in social organizations. The INICO-FEAPS Scale was administered to 1627 people whose ages ranged between 16 and 72 years old. The instrument comprises 72 parallel items organized around eight quality-of-life domains in each of the two forms: a self-report and a report by others. Several internal consistence indexes showed a good reliability of the scale. CFA was used to compare the goodness-of-fit to the data of alternative models. The eight-correlated first-order factors showed the best fit to the data in comparison to the unidimensional solution and hierarchical models. The instrument serves as a helpful tool for organizations to operate as bridges to the community, develop person-centered planning and individualized support, and implement evidence-based practices for quality improvement.

Diagnóstico y clasificación en discapacidad intelectual

El diagnostico de la discapacidad intelectual asi como los sistemas de clasificacion de la misma han constituido un tema de interes principal para todos aquellos que intentan comprender este fenomeno y acercarse un poco mas al complejo entramado de intervencion en este campo. El objetivo de este articulo consiste en realizar un pequeno recorrido sobre las implicaciones, peligros y beneficios de los sistemas de clasificacion en el campo de la discapacidad intelectual para finalmente abordar el enfoque multidimensional con el que los profesionales de la salud y los servicios se acercan actualmente a la misma.

Application of the Rasch rating scale model to the assessment of quality of life of persons with intellectual disability

Abstract Background Most instruments that assess quality of life have been validated by means of the classical test theory (CTT). However, CTT limitations have resulted in the development of alternative models, such as the Rasch rating scale model (RSM). The main goal of this paper is testing and improving the psychometric properties of the INTEGRAL Quality of Life Scale (i.e., fit statistics, person and item reliability coefficients) with RSM. Method The sample comprised 271 Spanish adults with intellectual disability. Results The results showed that the data fitted the model, point-biserial correlations were adequate, items showed precision, reliability of items (.98) and persons (.89) were adequate, and the response categories were suitable (thresholds were ordered). However, one item (“I feel excluded from society”) did not fit the model and a few items were too easy for participants to achieve. Conclusions Although it seems necessary to include more difficult items and to delete one, the INTEGRAL Scale is a useful instrument with evidence of validity.

Operationalisation of quality of life for adults with severe disabilities

BACKGROUNDnThe operationalisation of quality of life for people with more severe disabilities has been acknowledged in the published research for more than two decades. This study aims to contribute to our knowledge and understanding of the quality of life of adults with severe disabilities by developing a set of quality of life indicators appropriate to this population using a Delphi method and the eight-domain conceptual model proposed by Schalock & Verdugo (2002).nnnMETHODnThe participating panel in the Delphi method included 12 experts who evaluated each proposed item according to four criteria: suitability, importance, observability and sensitivity. Descriptive analyses were used to select the best items in each of the four rounds of this Delphi study, as well as examining the coefficients of concordance that were calculated for the final pool of items.nnnRESULTSnThe four rounds of the Delphi study resulted in a final pool of 118 items (91 that were considered valid in the first round plus 27 items proposed, reformulated or discussed in the following rounds). Importance and sensitivity were the criteria that received the highest and lowest ratings, respectively, but also the ones that had the highest and lowest mean coefficients of concordance. Experts showed the strongest agreement for items related to material well-being, while the weakest was found for items related to personal development.nnnCONCLUSIONSnThis study further contributes to our understanding of how to operationalise and measure quality of life in adults with severe disabilities. The item pool generated may prove helpful in the development of instruments for the measurement of quality of life-related outcomes in this population.