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Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports

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A special issue of Behavioral Sciences (ISSN 2076-328X). This special issue belongs to the section "Health Psychology".

Deadline for manuscript submissions: closed (31 July 2023) | Viewed by 16623

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Special Issue Editors

Dr. Cristina Mumbardó-Adam

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Guest Editor

Department of Cognition, Development and Educational Psychology, Faculty of Psychology, University of Barcelona, 08007 Barcelona, Spain
Interests: self-determination in people with intellectual disability and/or autism spectrum disorder; the role of context in self-determination development; quality of life measurement and operacionalization in people with disabilities; inclusive education

Dr. Eva Vicente Sánchez

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Guest Editor

Department of Psychology and Sociology, Faculty of Education, University of Zaragoza, 50009 Zaragoza, Spain
Interests: quality of life and self-determination of people with and without disabilities (from early childhood to adult life); educational needs identification and personalized supports planning; evaluation of people with intellectual disabilities oriented to the planning of supports and interventions

Dr. Verónica M. Guillén Martín

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Guest Editor

Department of Education, Faculty of Education, University of Cantabria, 39005 Santander, Spain
Interests: support needs in children with intellectual and developmental disabilities; educational needs identification and personalized support plans; evaluation of students oriented to the planning of supports and interventions; inclusion; quality of life and self-determination

Special Issue Information

Dear Colleagues,

When people with intellectual and/or developmental disabilities (IDD) fight for their rights and act with self-determination, they nurture their sense of empowerment and improve their quality of life. To facilitate this quality-of-life enhancement, contexts and environments where people with IDD live and develop must provide for opportunities and deliver individualized support. It is widely known that contexts in which people with IDD live and develop shape their quality of life and self-determination expression. Further research is needed to understand how to build supportive environments in the lives of people with disabilities to improve their quality of life (and its dimensions), or ultimately, to enhance personal goals and results. In light of these premises, this Special Issue aims at advancing the literature on the role of contexts and supports in enhancing people with IDD quality of life. We therefore welcome theoretical and/or empirical contributions that broaden knowledge on those mechanisms leading to an improved quality of life through building positive environments and providing tailored and contextualized support.

Dr. Cristina Mumbardó-Adam
Dr. Eva Vicente Sánchez
Dr. Verónica M. Guillén Martín
Guest Editors

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Keywords

quality of life
self-determination
supports
support needs
disabilities
opportunities
rights

Published Papers (11 papers)

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Research

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11 pages, 309 KiB

Open AccessArticle

Support Needs of Children with Autism Spectrum Disorders: Implications for Their Assessment

by Verónica M. Guillén, Miguel Á. Verdugo, Pedro Jiménez, Virginia Aguayo and Antonio M. Amor

Behav. Sci. 2023, 13(10), 793; https://doi.org/10.3390/bs13100793 - 24 Sep 2023

Viewed by 1034

Abstract

The construct of support needs has become a key aspect for the diagnostics, classification, and interventional management of autism spectrum disorders (ASDs). However, instruments specifically designed to assess support needs in this population are not available. Currently, the Supports Intensity Scale for Children (SIS-C), which could be administered to assess students with any type of intellectual disability (ID), is the only valid tool able to assess support needs in Spain. Our aim was to verify whether the SIS-C is useful for assessing the support needs of students with ASD, regardless of whether or not they present ID. The participants were subdivided into two groups. One group included students with ASD and ID (n = 248), and the other comprised participants with ASD without an ID (n = 44). The results of the two groups were compared with those reported in the original validation sample of the SIS-C, which involved participants with ID without ASD (n = 566). The results showed that this scale could be useful for assessing support needs in the three subgroups, but it appeared that different standardized norms based on the characteristics of each specific population would be appropriate. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

14 pages, 334 KiB

Open AccessArticle

Physical Activity and Quality of Life among People with Intellectual Disabilities: The Role of Gender and the Practice Characteristics

by Evelia Franco, Carmen Ocete, Elena Pérez-Calzado and Ana Berástegui

Behav. Sci. 2023, 13(9), 773; https://doi.org/10.3390/bs13090773 - 15 Sep 2023

Viewed by 1201

Abstract

Staying physically active is synonymous with good health and well-being, and its benefits on the health of people with intellectual disabilities (PWIDs) have been studied. However, there is a lack of information on how it can influence their quality of life (QoL). This study aimed to analyze the relationship between QoL and physical activity in PWIDs according to gender and the characteristics of the practiced activity. A questionnaire was administered to 380 PWIDs (mean age of 28.23 ± 12.53), 54.21% of which were men. The QoL dimensions and second-order factors were studied in relation to practicing physical activity, the practice type, the context, and gender. The results indicate that people who practiced any activity showed better QoL values. Those who engaged in a nonregulated physical activity had better values in self-determination, emotional well-being, social inclusion, and personal development, while those who did sports presented higher scores in interpersonal relationships and physical well-being. In addition, it also appears that the association between physical activity and the QoL dimensions is distinct in inclusive and specific contexts. In conclusion, physical activity is related to a better QoL, although the impact of the practice type and context differs for each QoL dimension. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

23 pages, 343 KiB

Open AccessArticle

Self-Perception of Inclusion in an Inclusive Choir: An Analysis Using the Scale for the Assessment of Inclusion (SAI)

by Borja Juan-Morera, Icíar Nadal-García, Belén López-Casanova and Eva Vicente

Behav. Sci. 2023, 13(9), 758; https://doi.org/10.3390/bs13090758 - 12 Sep 2023

Cited by 1 | Viewed by 981

Abstract

Inclusion promotes equal opportunities, and aims to eliminate discrimination, by ensuring full access, participation, and representation for all individuals in society, with music playing a crucial role in addressing this global challenge, and fostering positive and inclusive change. The aim of this study is to identify perceptions of inclusive culture, policies, values, and practices in one specific inclusive choir in Spain. The sample consisted of 135 members, ranging from 18 to 79 years of age, of which 22.2% have recognised disabilities. All of them filled in the adapted Scale for the Assessment of Inclusion (SAI) form. The results show that, regardless of gender, age, and length of participation in the choir, their members share positive perceptions of the inclusiveness of its values, policies, practices, and culture. However, perceptions vary across the groups surveyed, and are generally more favourable among participants with a disability, those without a university education, or those aged 26 or over. It is found that people who participate in an inclusive choir, in which music is the mediating resource, perceive a high level of inclusion that allows them to feel they belong to a group where diversity, equality, and the promotion of people are respected. The findings are analysed, considering the importance of conducting multidimensional evaluations that include all members of an organisation. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

15 pages, 310 KiB

Open AccessArticle

Reasons and External Factors That Influence Access to University and Job Placement Programs for Individuals with Intellectual Disability

by Ingrid Sala-Bars, Anabel Moriña, Ana Casas and Lucía Van Der Mel

Behav. Sci. 2023, 13(9), 745; https://doi.org/10.3390/bs13090745 - 06 Sep 2023

Viewed by 1085

Abstract

Despite the rapid growth in inclusive university programs, access to inclusive higher education is still limited for students with intellectual disability (ID). This article explores the perspectives of 34 students with ID on their motives for accessing the inclusion and job placement programs at three Spanish universities and the external factors that contributed to their studying at the university. The study used a qualitative methodology based on a phenomenological approach using semi-structured interviews that had previously been validated and piloted. The data were analyzed using an inductive category and code system. The results addressed four questions: What is the participant’s academic pathway? What is their job profile? What are their reasons for studying at the university? What are the external factors that influenced their studying at the university? The study concludes that higher education can be an invaluable tool to foster the workplace inclusion of individuals with ID and promote their independent living. Furthermore, the family, organizations, and third-sector entities, as well as collaboration among them, emerged as key contextual factors for access to higher education and the personal and professional development of individuals with ID. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

13 pages, 318 KiB

Open AccessArticle

Personal Factors, Living Environments, and Specialized Supports: Their Role in the Self-Determination of People with Intellectual Disability

by Eva Vicente, Patricia Pérez-Curiel, Cristina Mumbardó-Adam, Verónica M. Guillén and María-Ángeles Bravo-Álvarez

Behav. Sci. 2023, 13(7), 530; https://doi.org/10.3390/bs13070530 - 24 Jun 2023

Viewed by 1390

Abstract

The self-determination of people with disabilities, and specifically people with intellectual disabilities (ID), is a growing issue due to its relevance in the field of inclusion and human rights. Although research has shown a significant relationship between self-determination and intelligence, other factors also contribute to its development. The purpose of this study was to understand what other variables may be influencing self-determination. Using the scores from 483 adolescents and adults with ID who completed the AUTODDIS scale, we performed inferential and regression analyses to determine the relationships between levels of self-determination, personal variables (sex, age, severity of ID), and contextual variables (living environment, specialized supports). We found that self-determination is affected by the severity of ID, and when this variable is controlled for, greater self-determination is mainly related to receiving occupational support and support for autonomy and independent living. Results also showed that, together with ID severity, occupational and psychoeducational support, as well as support for autonomy and independent living, were also predictors of the level of self-determination. In conclusion, this study confirms the importance of contextual variables in the development of self-determination in people with ID, placing the focus of intervention on social opportunities. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

17 pages, 1102 KiB

Open AccessArticle

Development and Validation of Standardized Quality of Life Measures for Persons with IDD

by Antonio M. Amor, Miguel Á. Verdugo, María Fernández, Alba Aza, Victoria Sánchez-Gómez and Zofia Wolowiec

Behav. Sci. 2023, 13(6), 452; https://doi.org/10.3390/bs13060452 - 30 May 2023

Cited by 1 | Viewed by 1236

Abstract

The implications of the individual quality of life (QoL) model of Schalock and Verdugo have made it the most cited QoL model in the field of disability. The QoL model is understood as a conceptual and applied framework for action that allows the materialization of the rights of persons with disabilities through the multidimensional assessment of these persons using QoL indicators, and the development of actions guided by these values and supported by evidence. The purpose of this work is to present the foundations of this model and offer a step-by-step guide to developing standardized QoL assessment instruments and providing evidence that supports their use to implement the model in practice. This paper explores relevant topics such as: (a) the need to identify critical population groups and contexts; (b) the identification of QoL indicators for said groups and contexts; (c) the development of items focused on the assessment of personal outcomes; (d) provision to the items of validity evidence based on content and pilot measure design and (e) validation process to gather evidence that supports the uses of the instrument. Last, a framework that allows using the evidence on personal outcomes as disaggregated and aggregated data at different levels of the social system is presented, thus highlighting the role of the model as a change agent regarding individuals, organizations and schools, and public policy. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

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12 pages, 1616 KiB

Open AccessArticle

The Quality of Life Supports Model as a Vehicle for Implementing Rights

by Lucía Morán, Laura E. Gómez, Miguel Ángel Verdugo and Robert L. Schalock

Behav. Sci. 2023, 13(5), 365; https://doi.org/10.3390/bs13050365 - 28 Apr 2023

Cited by 6 | Viewed by 2020

Abstract

The Quality of Life Supports Model (QOLSM) is emerging as a new framework that is applicable to people with disabilities in general, but specially to people with intellectual and developmental disabilities (IDD). The aim of this conceptual paper is twofold. Firstly, it aims to show the overlap between the QOLSM and the Convention on the Rights of People with Disabilities (CRPD), highlighting how the former can be used to address many of the goals and rights embedded in the latter. Secondly, the article seeks to illustrate the connection between these two frameworks and highlight the importance of acknowledging and measuring the rights of people with IDD. Therefore, we posit that the new #Rights4MeToo scale is ideal for: (a) providing accessible means and opportunities for people with IDD to identify and communicate their needs regarding their rights; (b) enhancing the supports and services that families and professionals provide to them; and (c) guiding organizations and policies to identify strengths and needs in relation to rights and quality of life. We also discuss future research needs and summarize the main findings of this article, highlighting its implications for practice and research. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

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11 pages, 303 KiB

Open AccessArticle

Differences in Self and Proxy Assessments of Self-Determination in Young People with Intellectual Disability: The Role of Personal and Contextual Variables

by Cristina Mumbardó-Adam, Clara Andrés-Gárriz, Alberto Sánchez-Pedroche and Giulia Balboni

Behav. Sci. 2023, 13(2), 156; https://doi.org/10.3390/bs13020156 - 11 Feb 2023

Cited by 3 | Viewed by 1586

Abstract

Background: Assessing self-determination in students with intellectual disabilities (IDs) is a primary step in facilitating progress monitoring. Researchers have developed both self and proxy assessments to favor a more in-depth evaluation of self-determination expression. However, to date, limited research has explored the congruence between both assessments. Methods: To address this need, the present study analyzes the differences between 219 adolescents with ID; 63% being males with an age range from 13 to 21 years (M = 16.8; SD = 1.72); and their teachers in their assessment of self-determination and explores which factors (students’ age, sex, level of ID and opportunities at school) might explain those differences. The participants were recruited intentionally. Students with IDs completed two questionnaires: the AIR Self-Determination Scale and the Spanish version of the Self-Determination Inventory, which was also completed by their teachers. Results: Significant differences were found in the self-determination assessment, with teachers rating it lower. Further, students’ sex and the opportunities they were provided at school to engage in self-determined actions were found to explain the differences in self-determination assessment. Conclusions: Research and practice initiatives to assess self-determination in young people with IDs must consider that informants’ points of view might be influenced by students’ sex and by contextual opportunities to engage in self-determined actions. Implications for further research and practice are discussed. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

17 pages, 606 KiB

Open AccessArticle

High-Tech Classroom Management: Effects of the Use of an App on Disruptive and On-Task Classroom Behaviours for Students with Emotional and Behavioural Disorder

by Gabriel Cohen and Neil Martin

Behav. Sci. 2023, 13(1), 23; https://doi.org/10.3390/bs13010023 - 26 Dec 2022

Viewed by 1859

Abstract

Students with emotional behavioural disorders may exhibit extremely challenging behaviour that interferes with their academic achievement and social relationships. Failure at school frequently leads to a succession of poor life outcomes including increased rates of unemployment or underemployment. Increasing on-task behaviours and decreasing disruptive classroom behaviours is of crucial importance. If successful, this may promote positive experiences and outcomes in terms of effective learning, and, ultimately, greater opportunities in life. This study evaluated a high-tech approach to classroom management using an App* that offers elements of choice and predictability to students. Teachers were provided with two hours of training on how to upload lesson plans to their smartphone and how to broadcast onto screens in classrooms. A multiple-baseline design across four participants was used and the data suggested that the use of the App resulted in both increases in on-task behaviour and a reduction in disruptive classroom behaviour for all participants. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

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14 pages, 298 KiB

Open AccessArticle

Using the ICF Framework to Assess Communicative Competence in Dyadic Communication among Children and Adolescents Who Use Augmentative and Alternative Communication Devices in Taiwan

by Meng-Ju Tsai

Behav. Sci. 2022, 12(11), 467; https://doi.org/10.3390/bs12110467 - 21 Nov 2022

Cited by 1 | Viewed by 2114

Abstract

Augmentative and alternative communication (AAC) devices enable children and adolescents (CAD) with communication disorders to communicate competently and develop friendships through communicative competence (CC). Existing assessment tools are unable to indicate whether CAD aged 0 to 18 years would competently use the subsidized AAC devices provided by the Ministry of Health and Welfare in Taiwan. This study, thus, aimed to develop an assessment tool by using the International Classification of Functioning, Disability and Health (ICF) to measure CC in dyadic communication among CAD using AAC devices. Five speech-language pathologists (SLPs), five special education teachers, and four AAC experts (14 in total) selected codes relevant to the four domains of CC via the Delphi method. Next, they categorized the selected codes into one of the four domains of CC through a face-to-face expert panel. A total of 112 codes were listed in the tool and fully classified into the four domains of CC. Among these, seven codes were concurrently placed under two domains of CC. Consequently, this study developed an assessment tool by employing the ICF for children and youth core set using universal qualifiers to measure the relative levels of CC in dyadic communication among CAD who use AAC devices in their daily life. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

Other

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16 pages, 860 KiB

Open AccessSystematic Review

Participants’ Bias in Disability Research on Family Quality of Life during the 0–6 Years Stage

by Carmen T. Francisco Mora, Alba Ibáñez-García and Anna Balcells-Balcells

Behav. Sci. 2023, 13(9), 753; https://doi.org/10.3390/bs13090753 - 11 Sep 2023

Viewed by 914

Abstract

Background: Over the past two decades, various research teams have designed and applied instruments to measure the quality of life of families with a member who has a disability. A recent systematic review on the state of the Family Quality of Life in early care identified that many of these studies collected data only from the mothers. The present study aimed to investigate whether there is a bias in participant selection in these types of studies. Method: A systematic review of the scientific literature was conducted in three databases—Scopus, Web of Science, Eric—from 2000 to 2022. A total of 72 empirical studies were identified. Results: The findings indicate that most studies examining the Family Quality of Life were based on the information of a single informant per family unit. The profiles of participants according to the research objective are quite similar. In one-third of studies, the authors reported that family members who participate cannot be represented by only mothers or one participant per household. Conclusions: Given the dynamic and collective nature of the construct, the application of a systemic approach is necessary. Full article

(This article belongs to the Special Issue Quality of Life of People with Intellectual and/or Developmental Disabilities: The Power of Context and Supports)

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