A new scale for measuring quality of life in acquired brain injury.

PURPOSE: A common and frequent consequence of an acquired brain injury (ABI) is the diminished quality of life (QoL) of affected people. Because the majority of existing QoL instruments assess health-related domains, new instruments that allow for the evaluation of the QoL from an integral perspective that considers the context and personal factors of the individual are warranted. Hence, the purpose of this study is to develop and validate an instrument with these characteristics. METHODS: The CAVIDACE scale is a new 64-item specific instrument to assess QoL in people with ABI based on a third-person perspective. The validation sample comprises 421 adults with ABI, with ages ranging from 17 to 90 years (M = 53.12; SD = 14.87). The scale was completed by 97 professionals and 58 family members. Validity evidence based on the internal structure of the scale was provided through confirmatory factor analyses. Reliability was analyzed in terms of internal consistency and inter-rater reliability. RESULTS: The results supported the internal structure of the scale, based on the theoretical and assessment framework in which QoL is composed of eight intercorrelated first-order domains (CFI = 0.890, RMSEA = 0.065, SRMR = 0.071). The internal consistency was good or excellent for the eight domains (ordinal alpha ranging from 0.77 to 0.93). The inter-rater reliability was very high (0.97). CONCLUSIONS: The CAVIDACE scale is found to be a specific instrument with excellent psychometric properties that is helpful for the assessment of QoL in people with ABI, both in clinical practice and for research purposes.

Examining measurement invariance and differences across groups in the support needs of children with and without intellectual disability.

BACKGROUND: The purposes of this study were to empirically determine whether the support needs construct is generalizable across children with and without intellectual disability and to conduct cross-group comparisons to explore how extraordinary and non-extraordinary support needs differ in children. METHOD: One thousand thirty-six children (814 with intellectual disability 222 without intellectual disability) were assessed using the SIS-C. RESULTS: The SIS-C achieved scalar invariance between children with and without intellectual disability. Cross-group comparisons revealed differences in variances, in correlations between factors and significant latent mean differences for all factors. CONCLUSION: Results show that the support needs construct is generalizable to children with and without intellectual disability and that there are no qualitative differences in how they show their support needs, so typically developing children can be used as a reference group to explore differences between extraordinary and non-extraordinary support needs. Conceptual and practical implications are discussed, and future lines of research are provided.

Relationships between leisure participation and quality of life of people with developmental disabilities.

BACKGROUND: Studies of people with developmental disabilities suggest that participation in leisure activities might be a key factor for good quality of life. This study explores the relationships between objective and subjective quality of life and leisure participation of adults with developmental disabilities. MATERIALS AND METHODS: A cross-sectional design was used with a convenience sample of 125 people, aged 17-65, living in the community. Participants completed the subjective scale of Integral Quality Scale and the Leisure Assessment Inventory in the form of an individual interview. Staff completed the GENCAT Scale. RESULTS: No relationship was found between objective quality of life and leisure participation. However, correlations between some leisure participation dimensions and specific subjective quality of life domains were observed. The results establish a predictive relationship between leisure participation and material, emotional, and physical well-being. Personal and environmental variables analyzed were not found to have a moderating effect on the relationship between leisure participation and quality of life. CONCLUSIONS: These findings indicate that some aspects of leisure participation may significantly contribute to enhancing the quality of life of young people and adults with developmental disabilities living in the community.

Organizational change and evidence-based practices in support services for people with intellectual and developmental disabilities.

The impact on support services for persons with intellectual and developmental disabilities of the socioeconomic movements and theoretical reformulations of the last decades has generated the necessity, in order to guarantee their sustainability, to carry out processes of profound change in their organizational culture, intervening in the elements that compose it. Among them are professional practices as the best way to intervene in culture, with the use of comparative analysis between an organization's current practices and those expected with culture change. In this line, the organizational self-assessment tool "Organizational Effectiveness and Efficiency Scale" (OEES) is applied in a study with 24 organizations, which uses a collaborative assessment approach in the service of a set of evidence-based practices identified as standards in key aspects that guide culture change, specifically, a person-centered approach, participative structures, use of information systems and data management, implementation of quality systems and participative and transformational leadership. The results obtained show that a large majority of organizations have significant discrepancies between their current practices and evidence-based practices. The descriptive analysis allows affirming the usefulness of the scale for an organizational diagnosis and identification of strategies to guide transformational change.

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

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.

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

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.

Quality of Life and the International Convention on the Rights of Persons With Disabilities: Consensus Indicators for Assessment.

BACKGROUND: The quality of life construct provides an ideal conceptual framework for translating such abstract concepts as self-determination, equity, accessibility, and inclusion. Through consultation with expert raters, we sought to develop and validate a bank of indicators and items, based on the quality of life conceptual framework, to be used as a means of evaluating and implementing the Articles of the Convention on the Rights of Persons with Disabilities (CRPD). METHOD: Thirty-two experts in the field of intellectual and developmental disabilities participated, rating the suitability, importance, and clarity of a bank of 296 items, as well as the relevance of controlling for 70 sociodemographic variables. RESULTS: After qualitative and quantitative analysis of the data, the final selection comprised 60 sociodemographic variables and 153 items that scored highly on all criteria and produced an excellent level of agreement between the experts. CONCLUSIONS: This bank of items and set of sociodemographic variables constitute the pilot version of a CRPD assessment and monitoring instrument with sufficient evidence of content validity, which may be useful in developing evidence-based practices and in detecting rights violations.

A New Paradigm in the Field of Intellectual and Developmental Disabilities: Characteristics and Evaluation.

BACKGROUND: A new paradigm, which we refer to as The Quality of Life Supports Paradigm, is emerging internationally in the field of intellectual and developmental disabilities. The new paradigm integrates the key concepts of "quality of life" and "supports". This article addresses the question of how one evaluates a new paradigm. METHOD: This is a conceptual work that describes five characteristics of a paradigm. The characteristics are based on the groundbreaking work of relevant authors in the field of intellectual and developmental disabilities, quality of life, supports, and evaluation. RESULTS: The five characteristics are that a paradigm is theory driven, ethical, flexible, adaptable, and measurable. The article especially delves into the fifth characteristic and provides specific examples of how to evaluate the new paradigm. CONCLUSIONS: The new paradigm encompasses core values, accommodates contextual factors, and can be used for multiple purposes to positively impact the development and implementation of value-based policies and practices that enhance the quality of life and personal well-being of people with intellectual and developmental disabilities.

Predictive Factors of Self-Reported Quality of Life in Acquired Brain Injury: One-Year Follow-Up.

Background: The sequelae and disabilities that follow an acquired brain injury (ABI) may negatively affect quality of life (QoL). The main objective of the study is to describe the QoL after an ABI and identify the predictors of a better QoL. Methods: Prospective cohort study with follow-up measurement after one-year. The sample comprised 203 adults with ABIs (64% male) aged 18-86 years (M = 53.01, SD = 14.44). Stroke was the main etiology of the injury (55.7%), followed by a TBI (32.8%), and the average time since injury was 8 years (M = 8.25, SD = 7.83, range = 0.5-47.5). Patients assessed their QoL through the scale Calidad de Vida en Daño Cerebral (CAVIDACE self-reported version; "quality of life in brain injury" in English), an ABI-specific tool based on the eight-domain QoL model. Other variables measured were: depression, self-awareness, community integration, resilience, and social support at baseline and one-year follow-up. Results: The studied factors showed few significant changes over time. The analyses showed statistically significant differences in QoL scores in several sociodemographic (age, civil status, education, legal capacity, and dependency), injury-related (time, location, and comorbidity), rehabilitation, and personal-social variables (self-awareness, depression, social support, resilience, and community integration). The levels of dependency, depression, and satisfaction with social support were independent predictors of the total QoL score one-year follow-up. Conclusions: QoL after ABI depends on multiple elements that must be considered. There are factors such as satisfaction with social support, depression, community integration, and resilience that must be monitored throughout the rehabilitation process.

Examining the Suitability of the List of Indicators Describing Age-Related Typical Support Needs.

The list of indicators is a form of training material used for the Supports Intensity Scale-Children's version (SIS-C). It is aimed at helping interviewers distinguishing between extraordinary and age-related typical support needs in children with intellectual and developmental disabilities (IDD) when implementing the SIS-C, and thus improve supports planning. The aim of this study is to adapt and test the list of indicators' content validity and rating scale's functioning in Spain. A total of 222 general education teachers reported their agreement with each indicator description using a 5-point rating scale. A total of 353 of 366 indicators showed evidence of content validity, whereas analyses on the rating scale highlighted the necessity of subsuming one of the scale categories within another. The need for developing research-based training materials to develop training programs on the use of the SIS-C to support decision-making concerning supports planning with students with IDD, the relevance of using the latest methodological approaches available when required, and future lines of research are discussed.

Longitudinal study of quality of life in acquired brain injury: A self- and proxy-report evaluation.

After an acquired brain injury (ABI), the person remains with several impairments and disabilities that cause a decrease in his/her quality of life (QoL), which could change over time. The objective of the study was to analyse the evolution patterns of QoL in a sample of persons with ABI for one-year as well as the differences in proxy- and self-report versions of a QoL instrument. METHOD: The sample comprised 402 persons with ABI with ages ranging between 18 and 91 years, whom 36.20% had had the accident recently (i.e., three years or less). Patients, professionals and relatives responded at three evaluation points to the CAVIDACE scale, an ABI-specific QoL tool. RESULTS: ANOVAs showed an improvement in QoL in the two follow-ups; the improvement was especially significant in the period between baseline and six months. The respondent factor did not interact with the evaluation time, but significant differences were found between respondents, with scores of patients higher than that for proxies. Finally, the QoL's evolution interacts with the time elapsed since injury, showing significant improvements in the most recent group (i.e., three years or less). CONCLUSIONS: QoL must be considered from the earliest moments after ABI to obtain more significant improvements.

Después del daño cerebral adquirido (DCA), la persona permanece con secuelas y discapacidades severas que pueden causar una disminución de su calidad de vida (CV) variable a lo largo del tiempo. El objetivo de este estudio es analizar los cambios en la CV a lo largo de un año, así como las diferencias entre las versiones autoinforme y heteroinforme de un instrumento de CV. Método: La muestra estuvo compuesta por 402 personas con DCA, con edades entre 18 y 91 años, de quiénes el 36,20% había tenido el accidente recientemente (tres años o menos). Pacientes, profesionales y familiares respondieron en los tres momentos de evaluación a la escala CAVIDACE, un instrumento específico para DCA. Resultados: Los ANOVAs mostraron una mejoría en muchas de las dimensiones de CV en ambos seguimientos, especialmente significativa entre la línea base y los seis meses. Los pacientes puntuaron más alto que el resto de evaluadores, pero este factor no mostró interacción con el momento de evaluación. Finalmente, la evolución de la CV interactuó con el tiempo transcurrido desde el DCA, encontrándose mejorías en el grupo con menor recorrido. Conclusiones: La CV debe ser tenida en cuenta desde los primeros momentos tras el DCA para obtener mejorías más significativas.

Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective.

BACKGROUND: Individuals with intellectual and developmental disabilities (IDD) represent a particularly vulnerable group to the threats posed by COVID-19. However, they have not yet been given a voice on how their living conditions have been affected by COVID-19. AIMS: This study aims to report the impact on people with IDD of COVID-19 and the response measures applied in Spain during the lockdown. METHOD: Data on 582 individuals with IDD were collected through a survey. Seven open questions were included to capture the perspectives of people with IDD on COVID-19 and its consequences. Content analysis was performed to identify themes and categories across participant responses. Chi-square tests were used to analyze the relationship between reporting a specific category and participants' characteristics. RESULTS: Supports have been conditioned by the living context. People living in specific settings had fewer natural supports, while those living with their family relied heavily on it. Participants also lacked supports considered necessary. It is worth stressing that persons with IDD have also provided support to others. CONCLUSIONS: Although people with IDD have generally received the assistance they need during the lockdown, it must be ensured that appropriate supports are provided regardless of the context in which they live.

Differences in the support needs of children with developmental disabilities among groups of medical and behavioral needs.

BACKGROUND/AIMS: Medical and behavioral needs are relevant in organizing and providing support strategies that improve the quality of life for children, along with their families. The present study aims to examine the impact of medical and behavioral needs on the need for support of children with disabilities. METHODS: Health and education professionals were interviewed using the Supports Intensity Scale-Children's version to estimate the support needs of 911 children and adolescents (5-16 years) with an intellectual disability, including 55.32% with an additional disability. For data analysis, a model for measuring support needs was specified, consisting of seven support needs factors and three method factors. In estimating the model, four groups of medical and behavioral needs were considered. The factor scores' means of the groups were compared through t-tests. RESULTS: Medical and behavioral needs had an impact on overall support needs. Differences were found in all support domains for medical needs. The greatest influence of behavioral needs was found in the Social and School participation areas but was indistinguishable between the mild and moderate levels of needs. CONCLUSIONS: Medical and behavioral needs greatly affect the need for support in a child's daily life, so they need to be considered a priority for support services. The importance of standardized assessments is emphasized to help develop support strategies.

A Systematic Review of the Assessment of Support Needs in People with Intellectual and Developmental Disabilities.

An evaluation of support needs is fundamental to the provision of services to people with intellectual and developmental disabilities. Services should be organized by considering the support that people need to improve their quality of life and enforce their rights as citizens. This systematic review is conducted to analyze the rigor and usefulness of the available standardized tools for assessing support needs, as well as the uses of their results. Several databases were consulted, including Web of Sciences, Scopus, PubMed, ProQuest Central, PsycInfo, ERIC, and CINAHL, and the 86 documents that met the review criteria were organized into four sections: (a) measurement tools, (b) descriptive/correlational studies, (c) predictive studies, and (d) interventions. The results showed that age, level of intellectual disability, adaptive behavior skills, the number and type of associated disabilities, and medical and behavioral needs affected the support needs of people with disabilities. Quality of life outcomes have been predicted by the individual's support needs, explaining a significant percentage of their variability. The findings are useful in guiding assessments and planning interventions. Further research should address the effectiveness of specific support strategies and the development of social policies and indicators for inclusion that involve assessing support needs.

Toward a Better "Person-Environment Fit" through Items Calibration of the SIS-C.

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.

Are Type, Frequency, and Daily Time Equally Valid Estimators of Support Needs in Children With Intellectual Disability? A Multitrait-Multimethod Analysis of the Supports Intensity Scale for Children (SIS-C).

Support needs represent the intensity of support required by a person with a disability in order to take part in the activities related to normative human functioning. The Supports Intensity Scale for Children (SIS-C) is possibly the most promising tool for assessing and designing individualized support programs in children with intellectual disability. The SIS-C measures support needs across 61 activities, each one assessed along three methods: type of support, frequency, and daily time during which support is to be given. We investigated the impact of method effects in the SIS-C through a bifactor approach to the analysis of multitrait-multimethod matrices. The results suggest that neither intensity nor frequency scales produced method effects that significantly distorted the measurement of support needs. However, the daily support time method had substantial undesirable effects on five of the seven subscales of support needs. Considerations about support needs assessment and future modifications of the scale are discussed.

Predictive factors of quality of life in acquired brain injury.

The sequelae and the disability and dependence that follow an acquired brain injury (ABI) may result in a significant reduction in the quality of life (QoL) of those affected. The objective was to assess the QoL of a sample of Spanish patients with an ABI and analyze the influence of certain sociodemographic and injury-related variables on their QoL. METHOD: The sample comprised 421 adults (60% male; M age = 53.12; SD = 14.87). Professionals and relatives assessed the patients' QoL through the CAVIDACE scale, an ABI-specific tool based on the eight-domain QoL model. RESULTS: Univariate analyses showed statistically significant differences in the QoL scores in several sociodemographic (age, civil status, education level, prior employment status, type of home, level of supports, loss of legal capacity, recognized dependence, and degree of dependence) and injury-related (time since the injury, location of the injury, and presence of post-traumatic amnesia) variables. The multiple linear regression showed that loss of legal capacity, time since the injury, prior employment status, location of the injury, and degree of dependence were significant QoL predictors. CONCLUSIONS: These findings provide knowledge for the development of programs aimed at reducing the negative impact of ABI on QoL.

ANTECEDENTES/OBJETIVO: Las secuelas, discapacidad y dependencia que siguen al daño cerebral adquirido (DCA) pueden resultar en una reducción significativa en la calidad de vida (CV) de los afectados. El objetivo fue evaluar la CV de una muestra española con DCA y analizar la influencia de variables sociodemográficas y relacionadas con la lesión en su CV. Método: La muestra comprendió 421 adultos (60% hombre; M edad = 53,12; DT = 14,87). Profesionales y familiares evaluaron la CV de los pacientes a través de la escala CAVIDACE, una herramienta específica para DCA basada en el modelo de CV de ocho dimensiones. Resultados: Los análisis univariantes mostraron diferencias estadísticamente significativas en las puntuaciones de CV en variables sociodemográficas (edad, estado civil, nivel educativo, situación de empleo previa, tipo de hogar, nivel de apoyos, incapacidad legal, situación de dependencia reconocida y su nivel) y relacionadas con la lesión (tiempo desde la lesión, localización de la lesión y presencia de amnesia postraumática). El análisis de regresión múltiple mostró la incapacidad legal, el tiempo desde la lesión, la situación de empleo previa, la localización de la lesión y el nivel de dependencia como predictores significativos de CV. Conclusiones: Estos hallazgos proporcionan conocimiento para el desarrollo de programas dirigidos a reducir el impacto negativo del DCA en la CV.

Disability Policy Implementation From a Cross-Cultural Perspective.

Implementation of disability policy is influenced by social, political, and cultural factors. Based on published work, this article discusses four guidelines considered critical for successful policy implementation from a cross-cultural perspective. These guidelines are to: (a) base policy implementation on a contextual analysis, (b) employ a value-based approach, (c) align the service delivery system both vertically and horizontally, and (d) engage in a partnership in policy implementation. Public policy should be understood from a systems perspective that includes cross-cultural issues, such as how different stakeholders are acting and the way they plan and implement policy.

Evidence and Evidence-Based Practices: Are We There Yet?

The purpose of this article is to move the field of intellectual and closely related developmental disabilities (IDD) towards a better understanding of evidence and evidence-based practices. To that end, we discuss (a) different perspectives on and levels of evidence, (b) commonly used evidence-gathering strategies, (c) standards to evaluate evidence, (d) the distinction between internal and external validity, and (e) guidelines for establishing evidence-based practices. We also describe how the conceptualization and use of evidence and evidence-based practices are changing to accommodate recent trends in the field.

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.