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The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability

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A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601).

Deadline for manuscript submissions: closed (31 December 2020) | Viewed by 54459

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Dr. Laura Elisabet Gomez Sanchez

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Faculty of Psychology, University of Oviedo, 33003 Oviedo, Spain
Interests: Intellectual and developmental disabilities; quality of life; supports; adaptive behavior; test development and validation

Special Issue Information

Dear Colleagues,

We are arranging a Special Issue entitled “The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability”, which will be published in the International Journal of Environmental Research and Public Health, a multidisciplinary open access journal by MDPI with extraordinary visibility, fast peer review/publication process, and high impact factor (JCR 2018 IF=2.468; Q1 in ‘Public, Environmental & Occupational Health’ [SSCI]).

Societal views on the human rights of persons with disabilities have significantly changed over the last four decades. However, while achieving equality, autonomy, nondiscrimination, participation, and inclusion should be a priority, abuses and violations of rights often occur in the most immediate environments of people with intellectual disability. We would like to invite researchers to contribute innovative work to be considered for publication in this Special Issue, intended to provide greater visibility to people with intellectual disability as full subjects of rights and improve their quality of life from a perspective of human rights, citizenship, and contextual analysis.

This Special Issue is intended to discuss the role of context, the provision of inclusive environments, and the improved health status and quality of life of people with intellectual disability. Therefore, we call for manuscripts addressed at promoting quality of life-related personal outcomes and enhancing quality of life and equality for people with intellectual disability. Potential topics include but are not limited to research on rehabilitation, health (physical, social, and emotional), education, employment, inclusion, supports, leisure, and other personal (e.g., age, gender, intellectual functioning, adaptive behavior, diagnostic group) or environmental variables (normative expectations, attitudes, opportunities, accessibility, type of services, culture, rights). The keywords listed below provide an outline of some of the possible areas of interest.

Original, high-quality contributions from all over the world that have not yet been published or that are not currently under consideration for publication by other journals are welcomed. Submissions can include original research articles, systematic reviews, meta-analyses, and theoretical contributions. Priority will be given to papers presenting the results of data collection and statistical analysis, as well as theoretical reviews framed within a systematic methodology or meta-analysis, which are outstanding because of the relevance of their results. We also encourage study findings that can be translated to policy or practice suggestions, and thus, research that can be applied to improving quality of life of people with intellectual disability.

All manuscripts must be received no later than end of August 2020. All submitted manuscripts will be reviewed by experts in the intellectual disability field and will be processed through a fast peer review process.

Dr. Laura Elisabet Gomez Sanchez
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

intellectual disability
quality of life
valued outcomes
convention on the rights of persons with disabilities
contextual analysis
context-based interventions
supports paradigm
healthcare and social services
inclusion
empowerment
self-determination
accessibility
abuse

Published Papers (12 papers)

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Research

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19 pages, 368 KiB

Open AccessArticle

The Spanish Family Quality of Life Scales under and over 18 Years Old: Psychometric Properties and Families’ Perceptions

by Anna Balcells-Balcells, Joana M. Mas, Natasha Baqués, Cecilia Simón and Simón García-Ventura

Int. J. Environ. Res. Public Health 2020, 17(21), 7808; https://doi.org/10.3390/ijerph17217808 - 25 Oct 2020

Cited by 12 | Viewed by 2273

Abstract

Background: Family quality of life (FQoL), just like individual quality of life, has become a priority outcome in the policies and services received by persons with intellectual and developmental disabilities (IDD) and their families. Conceptualizing, measuring, and theorizing FQoL has been the object of investigation in recent decades. The goal of this paper is to present a revision of the Spanish Family Quality of Life Scales, the CdVF-E < 18 and the CdVF-E >18, and describe the FQoL of Spanish families with a member with IDD. Methods: The sample included a total of 548 families with a member under 18 years old and 657 families with a member over 18. Based on an Exploratory Factor Analysis (EFA) firstly and a Confirmatory Factor Analysis (CFA) secondly, the two scales’ psychometric properties were explored. Results: The CdVF-ER < 18 and the CdVF-ER > 18 comprise 5 dimensions, containing 35 and 32 items, respectively, and they show good validity and reliability. The families obtained a high FQoL score, although some differences exist between the dimensions on which families with children under and over 18 score highest and lowest. Conclusion: The characteristics of the revised scales facilitate their use by professionals, administrations, and services. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

16 pages, 1252 KiB

Open AccessArticle

Communication Support Needs in Adults with Intellectual Disabilities and Its Relation to Quality of Life

by Juan Carlos García, Emiliano Díez, Dominika Z. Wojcik and Mónica Santamaría

Int. J. Environ. Res. Public Health 2020, 17(20), 7370; https://doi.org/10.3390/ijerph17207370 - 09 Oct 2020

Cited by 15 | Viewed by 8129

Abstract

Research suggests that individuals with intellectual disabilities (ID) experience difficulties in communication, ranging from intelligibility issues to more severe problems in the use and comprehension of spoken, written or sign language. Despite the negative effects that the inability to communicate have on quality of life (QoL), not much research has explored the relationship between communicative competence and QoL in the adult population with ID. The aim of this study was to describe the global communication profile of a sample of 281 adults with ID recruited from Grupo AMÁS Social Foundation, who differed in their level of communication support needs (CSN). The relationships between communicative competence and CSN with QoL were further examined. The results showed lower QoL indices for those participants characterized by their limited use of discourse and inability to exhibit certain communicative purposes, with the largest differences in the dimensions of self-determination, social inclusion, interpersonal relationships, emotional wellbeing and personal development. Overall, low levels of QoL were found for all participants, with even lower scores for the group identified as having CSN. A multiple regression model revealed that having speech/discourse competence is a powerful predictor of QoL, along with the level of disability and having the communicative competences to express likes and preferences or to establish new relationships. This clear relationship between communication and QoL is an important argument for disability support services when it comes to setting communication supports as a priority and as an important preventive step towards the protection of those at risk of exclusion. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

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21 pages, 407 KiB

Open AccessArticle

Attitudes of Mainstream and Special-Education Teachers toward Intellectual Disability in Italy: The Relevance of Being Teachers

by Laura Arcangeli, Alice Bacherini, Cristina Gaggioli, Moira Sannipoli and Giulia Balboni

Int. J. Environ. Res. Public Health 2020, 17(19), 7325; https://doi.org/10.3390/ijerph17197325 - 07 Oct 2020

Cited by 11 | Viewed by 4674

Abstract

The attitudes of teachers toward intellectual disability (ID) contribute to an effective school inclusion of students with ID, thereby enhancing their quality of life. The present study was aimed at investigating the attitude differences toward ID of mainstream and special-education teachers in Italy and the general and specific teachers’ characteristics most related to these attitudes. An online version of the Attitudes toward Intellectual Disability (ATTID) questionnaire was filled by 307 mainstream teachers and 237 special-education teachers. The findings show that special-education teachers held more positive attitudes. Specific ATTID dimensions were positively affected for both types of teachers by previous training in special education/ID, perceived support, and promotion of positive attitudes toward ID, in addition to the quality of relationships with individuals with ID, while they were positively affected for special-education teachers by perceived efficacy of ID knowledge. No or very limited effects were observed for previous experience in teaching students with typical development or ID (even with severe/profound ID). Fostering resources to provide teachers with high-quality training, support, and resources and strategies to promote positive attitudes toward ID seems a relevant approach leading to favorable attitudes, thereby improving the quality of life of students with ID. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

14 pages, 1491 KiB

Open AccessArticle

Relationship between Quality of Life and the Complexity of Default Mode Network in Resting State Functional Magnetic Resonance Image in Down Syndrome

by Maria Carbó-Carreté, Cristina Cañete-Massé, María D. Figueroa-Jiménez, Maribel Peró-Cebollero and Joan Guàrdia-Olmos

Int. J. Environ. Res. Public Health 2020, 17(19), 7127; https://doi.org/10.3390/ijerph17197127 - 29 Sep 2020

Cited by 6 | Viewed by 2482

Abstract

Background: The study of the Default Mode Network (DMN) has been shown to be sensitive for the recognition of connectivity patterns between the brain areas involved in this network. It has been hypothesized that the connectivity patterns in this network are related to different cognitive states. Purpose: In this study, we explored the relationship that can be estimated between these functional connectivity patterns of the DMN with the Quality-of-Life levels in people with Down syndrome, since no relevant data has been provided for this population. Methods: 22 young people with Down syndrome were evaluated; they were given a large evaluation battery that included the Spanish adaptation of the Personal Outcome Scale (POS). Likewise, fMRI sequences were obtained on a 3T resonator. For each subject, the DMN functional connectivity network was studied by estimating the indicators of complexity networks. The variability obtained in the Down syndrome group was studied by taking into account the Quality-of-Life distribution. Results: There is a negative correlation between the complexity of the connectivity networks and the Quality-of-Life values. Conclusions: The results are interpreted as evidence that, even at rest, connectivity levels are detected as already shown in the community population and that less intense connectivity levels correlate with higher levels of Quality of Life in people with Down syndrome. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

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15 pages, 1136 KiB

Open AccessArticle

Self-Determination in People with Intellectual Disability: The Mediating Role of Opportunities

by Eva Vicente, Cristina Mumbardó-Adam, Verónica M. Guillén, Teresa Coma-Roselló, María-Ángeles Bravo-Álvarez and Sergio Sánchez

Int. J. Environ. Res. Public Health 2020, 17(17), 6201; https://doi.org/10.3390/ijerph17176201 - 26 Aug 2020

Cited by 29 | Viewed by 5421

Abstract

The Convention on the Rights of Persons with Disabilities have proclaimed the basic right of people to make one’s own choices, have an effective participation and inclusion. Research in the field of disability have stressed self-determination as a key construct because of its impact on their quality of life and the achievement of desired educational and adulthood related outcomes. Self-determination development must be promoted through specific strategies and especially, by providing tailored opportunities to practice those skills. Providing these opportunities across environments could be especially relevant as a facilitator of self-determination development. This manuscript aims to ascertain if opportunities at home and in the community to engage in self-determined actions are mediating the relationship between people intellectual disability level and their self-determination. Results have confirmed direct effects of intellectual disability level on self-determination scores. Indirect effects also predicted self-determination and almost all its related components (self-initiation, self-direction, self-regulation, self-realization, and empowerment) through opportunities in the community and at home. Autonomy was predicted by the intellectual disability level through an indirect effect of opportunities at home, but not in the community. These results highlight the need for further research to better operationalize and promote contextually rooted opportunities for people with intellectual disability to become more self-determined. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

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24 pages, 903 KiB

Open AccessFeature PaperArticle

Measurable Indicators of CRPD for People with Intellectual and Developmental Disabilities within the Quality of Life Framework

by Laura E. Gómez, Asunción Monsalve, Mª Lucía Morán, Mª Ángeles Alcedo, Marco Lombardi and Robert L. Schalock

Int. J. Environ. Res. Public Health 2020, 17(14), 5123; https://doi.org/10.3390/ijerph17145123 - 15 Jul 2020

Cited by 25 | Viewed by 5425

Abstract

This article proposes the quality of life (QOL) construct as a framework from which to develop useful indicators to operationalize, measure, and implement the Articles of the Convention on the Rights of Persons with Disabilities (CRPD). A systematic review of the scientific literature on people with intellectual and developmental disabilities (IDD) was carried out, with the aim of identifying personal outcomes that can be translated into specific and measurable items for each of the CRPD Articles aligned to the eight QOL domains. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, the systematic review was conducted across the Web of Science Core Collection, Current Contents Connect (CCC), MEDLINE, KCI-Korean Journal Database, Russian Science Citation Index and SciELO Citation Index, for articles published between 2008 and 2020. A total of 65 articles focusing on people with IDD were selected. The results were grouped into four broad categories: conceptual frameworks used to monitor the CRPD; instruments used to assess the rights set out in the CRPD; recommendations on the use of inclusive research; and indicators or personal outcomes associated with specific rights contained in the CRPD. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

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17 pages, 821 KiB

Open AccessArticle

Toward a Better “Person–Environment Fit” through Items Calibration of the SIS-C

by Víctor B. Arias, Antonio M. Amor, Miguel A. Verdugo, María Fernández, Benito Arias and Alba Aza

Int. J. Environ. Res. Public Health 2020, 17(10), 3471; https://doi.org/10.3390/ijerph17103471 - 15 May 2020

Cited by 5 | Viewed by 2698

Abstract

The Supports Intensity Scale–Children’s Version (SIS-C) is the only available tool to assess extraordinary support needs for children and adolescents with intellectual disability. In past years, several works have proclaimed the need for its ongoing improvement as a measurement instrument. To contribute to this line of research, the goal of this work is to analyze the reliability of the SIS-C and its usefulness to distinguish between different levels of intensity of support needs. To address this, 814 children and adolescents with intellectual disability (M = 11.13 years; SD = 3.41) were assessed using the SIS-C Spanish version. Item response theory analyses were conducted to estimate latent scores and assess measurement quality along the support needs continuum. The SIS-C items showed good overall discrimination and information values, and none showed problems that required their removal or modification. However, all the scales composing the SIS-C showed problems in discerning high levels of intensity of support needs, especially for children and adolescents with severe/profound intellectual disability. This ceiling effect may be an obstacle for both research and practice involving the SIS-C. Implications for research and practice are discussed, and future lines of research for improving the SIS-C are provided. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

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12 pages, 348 KiB

Open AccessArticle

Chronic Health Conditions in Aging Individuals with Intellectual Disabilities

by Laura García-Domínguez, Patricia Navas, Miguel Ángel Verdugo and Víctor B. Arias

Int. J. Environ. Res. Public Health 2020, 17(9), 3126; https://doi.org/10.3390/ijerph17093126 - 30 Apr 2020

Cited by 19 | Viewed by 3687

Abstract

Life expectancy of people with intellectual disability (ID) has increased in recent decades. However, there is little evidence of whether these extra years of life are spent in good health. The aim of this study, conducted in Spain, is to obtain information about the prevalence of chronic health conditions in people with ID over the age of 44 and compare it with that of their peers without disability. Twenty health conditions were analyzed in 1040 people with ID and 12,172 people without ID through a study of their prevalence. The findings show that chronic constipation, urinary incontinence, thyroid disorders and obesity are the most prevalent chronic diseases among individuals with ID. In addition, this population group suffers these health conditions more frequently than older adults without ID. Detection and early intervention in these health conditions will improve adequate access to social health services and subsequent treatment of aging adults with ID. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

14 pages, 762 KiB

Open AccessArticle

Going beyond Environment to Context: Leveraging the Power of Context to Produce Change

by Robert L. Schalock, Ruth Luckasson and Karrie A. Shogren

Int. J. Environ. Res. Public Health 2020, 17(6), 1885; https://doi.org/10.3390/ijerph17061885 - 13 Mar 2020

Cited by 17 | Viewed by 3170

Abstract

This article discusses the processes and implications of going beyond environment to context. The article (a) provides an operational definition of context; (b) describes a multidimensional model of context that views context as being multilevel, multifactorial, and interactive; (c) describes how conceptual models of quality of life, human rights, and human functioning can be used in conjunction with the multidimensional model of context to identify opportunities and develop context-based change strategies that improve quality of life, human rights, and human functioning outcomes; and (d) describes a four-step approach to leveraging an understanding of context to produce change. The article concludes with a discussion of the advantages of and barriers to moving beyond environment to context. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

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13 pages, 338 KiB

Open AccessArticle

Improving Environmental Capacities for Health Promotion in Support Settings for People with Intellectual Disabilities: Inclusive Design of the DIHASID Tool

by Kristel Vlot-van Anrooij, Thessa I.M. Hilgenkamp, Geraline L. Leusink, Anneke van der Cruijsen, Henk Jansen, Jenneken Naaldenberg and Koos van der Velden

Int. J. Environ. Res. Public Health 2020, 17(3), 794; https://doi.org/10.3390/ijerph17030794 - 28 Jan 2020

Cited by 9 | Viewed by 3222

Abstract

People with intellectual disabilities (ID) have unhealthier lifestyles than the general population. To sustainably improve their lifestyle and health status, a whole-system approach to creating healthy environments is crucial. To gain insight into how support for physical activity and healthy nutrition can be embedded in a setting, asset mapping can be helpful. Asset mapping involves creating a bottom–up overview of promoting and protective factors for health. However, there is no asset mapping tool available for ID support settings. This study aims to develop an asset mapping tool in collaboration with people with ID to gain insight into assets for healthy nutrition and physical activity in such settings. The tool is based on previous research and development continued in an iterative and inclusive process in order to create a clear, comprehensive, and usable tool. Expert interviews (n = 7), interviews with end-users (n = 7), and pilot testing (n = 16) were conducted to refine the tool. Pilot participants perceived the tool as helpful in pinpointing perceived assets and in prompting ideas on how to create inclusive environments with support for physical activity and healthy nutrition. This overview of assets can be helpful for mobilizing assets and building the health-promoting capacities of ID support settings. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

Review

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16 pages, 1319 KiB

Open AccessReview

State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

by Carmen Francisco Mora, Alba Ibáñez and Anna Balcells-Balcells

Int. J. Environ. Res. Public Health 2020, 17(19), 7220; https://doi.org/10.3390/ijerph17197220 - 02 Oct 2020

Cited by 15 | Viewed by 3471

Abstract

Background: In recent years, there has been a growing international interest in family quality of life The objective of this systematic review is to understand and analyze the conceptualization of the quality of life of families with children with disabilities between 0 and 6 years of age, the instruments for their measurement and the most relevant research results. Method: A bibliographic search was conducted in the Web of Science, Scopus and Eric databases of studies published in English and Spanish from 2000 to July 2019 focused on “family quality of life” or “quality of family life” in the disability field. A total of 63 studies were selected from a total of 1119 and analyzed for their theoretical and applied contributions to the field of early care. Results: The functional conceptualization of family quality of life predominates in this area, and a nascent and enriching holistic conceptualization is appreciated. There are three instruments that measure family quality of life in early care, although none of them is based on unified theory of FQoL; none of them focus exclusively on the age range 0–6 nor do they cover all disabilities. Conclusions: The need to deepen the dynamic interaction of family relationships and to understand the ethical requirement that the methods used to approach family quality of life respect the holistic nature of the research is noted. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

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Other

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7 pages, 254 KiB

Open AccessPerspective

The Importance of Self-Determination to the Quality of Life of People with Intellectual Disability: A Perspective

by Michael L. Wehmeyer

Int. J. Environ. Res. Public Health 2020, 17(19), 7121; https://doi.org/10.3390/ijerph17197121 - 29 Sep 2020

Cited by 53 | Viewed by 7912

Abstract

There is both an intuitive and theoretical link between self-determination and quality of life for people with intellectual and developmental disabilities. Theoretically, definitions of self-determination have framed the construct with regard to its contribution to a person’s overall quality of life, while theoretical frameworks of quality of life have included self-determination among the core dimensions contributing to enhanced quality of life. These theoretical linkages have been supported by research on the quality of life and self-determination of people with intellectual and developmental disabilities and the relationships between these constructs. This article provides an overview of theoretical frameworks of self-determination, their relationship with theoretical frameworks of quality of life, and research pertaining to these constructs with people with intellectual and developmental disabilities. It is concluded that self-determination and quality of life are important constructs in designing supports that enable people with intellectual and developmental disabilities and that an important means to enhance the quality of life of people with intellectual and developmental disabilities is to promote and enable people to be self-determined. Full article

(This article belongs to the Special Issue The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability)

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The Environmental, Public Health, and Human Rights Impacts on Enhancing the Quality of Life of People with Intellectual Disability

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