Proxy- and self-report evaluation of quality of life in cerebral palsy: Using Spanish version of CPQOL for Children and adolescents.

Background: Promoting quality of life (QoL) is one of the main goals in interventions carried out with children and adolescents with cerebral palsy (CP).

Aims: The aim of this study was to analyze the determinants of QoL in children with CP, including evaluations by the children themselves and their parents, and to identify discrepancies between evaluators.

Methods And Procedures: The adapted Spanish version of the Cerebral Palsy Quality of Life (CP-QOL) for children and adolescents (self-report and primary caregiver-reports versions) was applied to a sample of 74 children with CP and their respective parents (totaling 222 participants), as well as instruments to measure functioning (i.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.