Leisure education in youth with developmental disabilities: Effects on individual quality of life, adaptive behavior, and family quality of life.

Leisure participation enhances the learning of adaptive skills and the quality of life in youth with developmental disabilities. The goal of this study was to evaluate the effects of a leisure education program in individuals with developmental disabilities in terms of adaptive behavior and quality of life. Nine participants divided into two small groups and their families were included. A quasi-experimental design was employed to determine whether there was a program effect. The Adaptive Behavior Assessment System, the KIDSCREEN-27, and the Family Quality of Life Scale were administered before and after the intervention. There was a significant increase in social, home, and school skills as well as a better perception of quality of life in relationships with parents, social support, and school. In addition, the program affected the family's perception of practical and emotional support. Findings provide support for the application of this leisure program to enhance quality of life outcomes.

What Factors Explain Family Quality of Life in Neurodegenerative Diseases?

Neurodegenerative diseases (NDs) are a major cause of dependency among elderly and affect the entire family unit. However, the literature has paid little attention to Family Quality of Life (FQOL) and focused on the patient and the main caregiver. The aim was to analyze the FQOL of people with NDs from a systemic perspective and to identify associated factors. A sample of 300 family caregivers from the cross-border region of Spain-Portugal completed the FQOLS - ND, which collected FQOL global and domain-level scores in terms of attainment and satisfaction. The highest rates of FQOL were obtained for the domain Family relations and the lowest for Support from services. The level of perceived barriers to social-health services emerged as the strongest predictor of global FQOL in all models. It is essential to reduce the obstacles to access social-health services and provide the family with resources according to their needs, especially in rural areas.

Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches.

BACKGROUND: The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using limited approaches. Thus, the main objective of this research is to achieve a deeper understanding of the quality of family life of people with a neurodegenerative disease, following a mixed-method approach that combines quantitative and qualitative methodology. METHODS: The quantitative instrument was the Spanish version of the Family Quality of Life Survey-Neurodegenerative Disease (FQOLS-ND), which was completed by 300 participating families. The qualitative methodology was used in two focus groups with family caregivers, with a total of 21 participants. RESULTS: On the one hand, confirmation of the dimensional structure of the scale in the focus groups was obtained and, on the other hand, the results of family quality of life in attainment and satisfaction were shown to be high for Family Relations and Careers and Planning for Careers and low for Support from Services and Leisure and Recreation. CONCLUSIONS: The results of this study, through the combination of quantitative and qualitative information, helps to identify key issues to optimize services that respond to the priority needs of families.

Transcultural adaptation and psychometric properties of Family Quality of Life Survey for caregivers of people with neurodegenerative disease: a study of Spanish families who live in the rural Spain-Portugal cross-border.

BACKGROUND: Neurodegenerative diseases (NDs) are one of the main causes of disability and dependence that have a great impact both on the quality of life of people with disabilities and their families. A majority of people with NDs receive care and support from the family, but there is no tool in Spain with which to measure whole-family QOL. The aim of this study was the translation, cultural adaptation, and validation of the FQOLS-Dementia into Spanish to assess FQOL among family members of individuals with NDs who live in the Spain-Portugal cross-border area. METHOD: The Spanish version was translated and adapted following the international guidelines for cross-cultural adaptation tests. A sample of 300 family caregivers was interviewed, applying an adapted version of the Family Quality Survey (FQOLS-Dementia). Confirmatory factor analysis was performed to validate the factor structure, and convergent validity was examined with Pearson's correlation coefficients of the global FQOL with the domains. Internal consistency reliability was determined using Cronbach's alpha. RESULTS: The domain structure of the FQOLS-ND showed a good fit. In the convergent validity, it was found that the total score and the subscale domain scores were associated with the global FQOL score, except for the Values domain. Internal consistency of nine domain subscales was strong (α = 0.80 to 0.91), and excellent for the total FQOL (α = 0.85) and the global FQOL (α = 0.87). CONCLUSION: The FQOLS-ND presented good validity and reliability in caregiver families with individuals with ND, so its application shows its usefulness in detecting areas of improvement and intervention strategies for FQOL in the Spain-Portugal cross-border area.

Comparing parent and child reports of health-related quality of life and their relationship with leisure participation in children and adolescents with Cerebral Palsy.

The aim of this study was to examine the level of agreement between reports of health-related quality of life (HR-QoL) obtained from children and adolescents with cerebral palsy (CP) and their parents. We also examined the relationships between child and parent perception of the different domains of HR-QoL and participation dimensions. Sixty-nine children and adolescents with CP and their parents separately completed parallel forms of the KIDSCREEN questionnaire. The Spanish version of the Children's Assessment of Participation and Enjoyment (CAPE) was completed by the child/adolescent. Concordance between the children's and the parents' HR-QoL scores was analyzed via Pearson and intraclass correlations. Differences in means were tested using paired Student's t-tests. Chi-square tests were using to assess the incidence of personal variables in the agreement and disagreement of children-parents' responses. The relationships between HR-QoL and leisure participation was confirmed with Pearson's correlation coefficients. Correlations between child and parent HR-QoL scores were small in 7 domains, medium in 2 and large in the Social Support & Peers domain. Children reported significantly better HR-QoL than their parents did. Participation was positively associated with specific domains of HR-QoL, but only weakly, and there were discrepancies between parent and child reports of HR-QoL. These findings provide interesting information about the importance of hearing the voices of children and adolescents with CP to promote HR-QoL and leisure participation.

Do environmental barriers affect the parent-reported quality of life of children and adolescents with cerebral palsy?

Physical, social, and attitudinal environment may affect the quality of life (QoL) of children and adolescents with cerebral palsy (CP). Participants in this study included parents of 206 children and adolescents with CP (55.8% males) aged 8-18 years (M=11.96, SD=3). Distribution according to the Gross Motor Function Classification System (GMFCS) was 24.3% level I, 18% level II, 18% level III, 12.6% level IV, and 27.2 level V. Environmental barriers were assessed with the Spanish version of the European Child Environment Questionnaire (ECEQ), and QoL was assessed with the KIDSCREEN parents' version. The results of the correlation analysis revealed that GMFCS level, IQ, and type of schooling are significantly correlated with QoL. Barriers were also associated with QoL. A series of hierarchical regression analyses indicated that, after controlling for the effect of child and parent's variables, barriers at home and at school significantly contribute to QoL. These findings underscore the importance of providing interventions to produce environmental changes that contribute to the improvement of QoL.

A psychometric evaluation of the ARC-INICO Self-Determination Scale for adolescents with intellectual disabilities / Evaluación psicométrica de la Escala ARC-INICO de Autodeterminación para adolescentes con discapacidad intelectual

The independence to decide and act as the causal agent in one's life are unchanging demands by empowerment movements focused on people with disabilities and by people with disabilities themselves. International efforts have been devoted to defining the concept of self-determination, analyzing its importance and relationship with the quality of life of people with disabilities and creating evaluation and promotion materials based on empirical evidences. The aim of this study is to present the process for developing and validating a new self-determination evaluation instrument for young people with intellectual disabilities: the ARC-INICO Scale. The sample for validating the Scale comprised 279 young people with intellectual disabilities, limited intellectual capacities and learning difficulties. The participants were aged between 11 and 19 years (M = 15.59, SD = 1.89). The results indicate that both the Scale and the four sections into which it is divided were reliable. The confirmatory factor analysis shows proof of validity based on the internal structure of the Scale, and confirms the correct fit of the proposed hierarchical structure. Practical implications and future directions of research are also discussed (AU)

La independencia para decidir y actuar como agente causal de la propia vida son constantes demandas realizadas por los movimientos en defensa de las personas con discapacidad y por las propias personas con discapacidad. La investigación internacional ha dedicado esfuerzos focalizados en delimitar el concepto de autodeterminación, analizar su importancia y relación con la calidad de vida de las personas con discapacidad, y elaborar materiales de evaluación y promoción basados en la evidencia. El objetivo de este estudio es presentar el proceso de desarrollo y validación de un nuevo instrumento de evaluación de la autodeterminación para jóvenes con discapacidad intelectual: Escala ARC-INICO. La escala se aplicó a una muestra de 279 jóvenes con discapacidad intelectual, capacidad intelectual límite y dificultades de aprendizaje cuya edad osciló entre 11 y 19 años (M = 15.59; SD = 1.89). Los resultados indican que tanto la escala como las secciones en las que se divide fueron fiables. El análisis factorial confirmatorio proporciona evidencias de validez basadas en la estructura interna de la escala y confirma el buen ajuste de los datos a la estructura jerárquica propuesta. Las implicaciones prácticas y las líneas de investigación futuras son también discutidas en este trabajo (AU)

A psychometric evaluation of the ARC-INICO Self-Determination Scale for adolescents with intellectual disabilities.

The independence to decide and act as the causal agent in one's life are unchanging demands by empowerment movements focused on people with disabilities and by people with disabilities themselves. International efforts have been devoted to defining the concept of self-determination, analyzing its importance and relationship with the quality of life of people with disabilities and creating evaluation and promotion materials based on empirical evidences. The aim of this study is to present the process for developing and validating a new self-determination evaluation instrument for young people with intellectual disabilities: the ARC-INICO Scale. The sample for validating the Scale comprised 279 young people with intellectual disabilities, limited intellectual capacities and learning difficulties. The participants were aged between 11 and 19 years (M = 15.59, SD = 1.89). The results indicate that both the Scale and the four sections into which it is divided were reliable. The confirmatory factor analysis shows proof of validity based on the internal structure of the Scale, and confirms the correct fit of the proposed hierarchical structure. Practical implications and future directions of research are also discussed.

La independencia para decidir y actuar como agente causal de la propia vida son constantes demandas realizadas por los movimientos en defensa de las personas con discapacidad y por las propias personas con discapacidad. La investigación internacional ha dedicado esfuerzos focalizados en delimitar el concepto de autodeterminación, analizar su importancia y relación con la calidad de vida de las personas con discapacidad, y elaborar materiales de evaluación y promoción basados en la evidencia. El objetivo de este estudio es presentar el proceso de desarrollo y validación de un nuevo instrumento de evaluación de la autodeterminación para jóvenes con discapacidad intelectual: Escala ARC-INICO. La escala se aplicó a una muestra de 279 jóvenes con discapacidad intelectual, capacidad intelectual límite y dificultades de aprendizaje cuya edad osciló entre 11 y 19 años (M = 15.59; SD = 1.89). Los resultados indican que tanto la escala como las secciones en las que se divide fueron fiables. El análisis factorial confirmatorio proporciona evidencias de validez basadas en la estructura interna de la escala y confirma el buen ajuste de los datos a la estructura jerárquica propuesta. Las implicaciones prácticas y las líneas de investigación futuras son también discutidas en este trabajo.

Environmental needs and facilitators available for children and adolescents with cerebral palsy: adaptation and validation of the European Child Environment Questionnaire (ECEQ) Spanish version.

PURPOSE: The objective of this study is to present the process of translating, adapting and validating the European Child Environment Questionnaire (ECEQ) in the Spanish context. METHOD: The participants were 200 parents of children and adolescents with cerebral palsy (CP) aged 8-18 years, from seven regions in Spain. The adaptation of the ECEQ original version was carried out through the translation and back translation into Spanish. Construct validity was assessed by Factor analysis, Rasch model, and analysing group differences in need and availability of environmental features (EFs) according to level GMFCS. RESULTS: We obtained a high rate of parental response. The ECEQ Spanish version contains 59 items and we identified four domains: Products and technology - home, school and community - services, systems and policies, support and relations, and Attitudes. Seventeen items were dropped as they did not fit well into plausible domains. Construct validity in terms of distinguishing between groups with expected for both need and availability. CONCLUSION: The ECEQ Spanish version was more appropriate to assess the needs of and access to EFs in the following domains: Products and technology and services, systems and policies, and it proved less appropriate for the support and relations, and attitudes domains. Implications for Rehabilitation Identification of barriers and environmental facilitators are key aspects to ensure the participation of children and adolescents with CP. The ECEQ is a useful tool for identifying needs and availability of the environmental features for children and adolescents with CP in Spain. This tool contains 59 items that are consistent with ICF framework. The Spanish version of ECEQ provides valuable information, which could be helpful to guide public services and organization services in order to optimize participation of children and adolescents with CP.

The influence of participation in leisure activities on quality of life in Spanish children and adolescents with Cerebral Palsy.

Participation is an important modifiable quality of life (QOL) determinant and a key outcome measure. The aim of this study was to confirm if participation in leisure activities affects the QOL domains in children and adolescents with Cerebral Palsy (CP) in Spain. A total of 206 children and adolescents with CP (and their parents), 115 boys and 91 girls, mean age of 11.96 years (SD=3.00; range 8-18 years) participated in the study. Distribution according to the Gross Motor Function Classification System (GMFCS) was 24.3% Level I, 18% Level II, 18% Level III, 12.6% Level IV, and 27.2% Level V. Participation in leisure activities was assessed using the Spanish version of Children's Assessment of Participation and Enjoyment (CAPE) and QOL using the KIDSCREEN parents' version. Diversity, intensity and enjoyment of participation explained the levels of QOL in the Physical well-being, Psychological well-being, Autonomy, Parent relation & home life and Social support & peers domains, independently of gender, age and level of impairment (motor and intellectual). We also found that intensity and enjoyment of participation in informal activities had more influence on the different QOL domains. The most influenced domain by the enjoyment of participation in all domains and types of CAPE activities was Psychological well-being. The participation in leisure activities had a positive effect on the QOL of the Spanish children and adolescents with CP.

Assessment of the Self-Determination of Spanish Students with Intellectual Disabilities and other Educational Needs.

The purpose of this study was to assess the self-determination of Spanish high school students with Intellectual Disability and other Special Educational Needs (SEN). A total of 371 students between 11 and 17 years of age participated in the study. Of these, 46.4% (n=171) presented SEN, specifically learning disabilities (n=97; 26.2%), borderline and intellectual disability with higher IQ scores (n=43; 11.6%) and mild intellectual disability (n=32; 8.6%). The remaining students without SEN made up the control group. The assessment was carried out using a translated and validated Spanish version of The Arc's Self-Determination Scale (Wehmeyer, 1995). This measure had appropriate psychometric properties. Students with SEN obtained significantly lower scores than their peers without SEN. However, no differences were found in relation to the type of SEN or, more specifically, in relation to the presence of intellectual disability. The educational implications of the results are discussed.