Marta Badia

Patterns and determinants of leisure participation of youth and adults with developmental disabilities.

BACKGROUND People with developmental disabilities are at high risk for a limited participation in leisure activities. The aim of this study was to investigate the participation in, preference for and interest in leisure activities of young and adults with developmental disabilities, and to examine the factors associated with leisure activity. METHODS A cross-sectional design was used with a convenience sample of 237 people aged 17 to 65, living in the community. Leisure participation was assessed with the Spanish version of Leisure Assessment Inventory. Percentages were calculated by types of activity, and repeated measures anovas were used to analyse the differences between types of activities, and mixed anovas to analyse the factors that explain differences in leisure activity participation, preference and interest. RESULTS Leisure social activities and recreation activities at home were mostly solitary and passive in nature and were identified as those being most commonly engaged in. Respondents expressed preference for more social and physical activity, and they were interested in trying out a large number of physical activities. Age and type of schooling determine participation in leisure activity. The results underscore the differences in leisure activity participation, preference and interest depending on the severity of the disability. CONCLUSIONS The findings reveal interesting patterns of participation in leisure activities from the viewpoint of youngsters and adults with developmental disabilities. Leisure participation among people with developmental disabilities is likely to be more affected by environmental factors than by personal factors.

Patterns and predictors of participation in leisure activities outside of school in children and adolescents with Cerebral Palsy

This study analyzed the patterns and predictors of participation in leisure activities outside of school of Spanish children and adolescents with Cerebral Palsy (CP). Children and adolescents with CP (n = 199; 113 males and 86 females) participated in this cross-sectional study. Their mean age was 12.11 years (SD = 3.02; range 8-18 years), and they were evaluated using the Spanish version of the Childrens Assessment of Participation and Enjoyment (CAPE). Means, standard deviations and percentages were used to characterize the profile of participation, and linear regression analyses were employed to assess associations between the variables (child, family and environmental factors) and the diversity, intensity and enjoyment of participation. Children and adolescents with CP reported low diversity and intensity of participation and high levels of enjoyment. Participation in leisure activities outside of school was determined more by child and environmental factors than by family ones.

Personal factors and perceived barriers to participation in leisure activities for young and adults with developmental disabilities

Participation in leisure activities has been identified as a factor that favors inclusion in the community and it also contributes to a better quality of life. This study analyzed the influence of certain personal characteristics and environmental factors in the participation in leisure activities of youngsters and adults with developmental disabilities. A cross-sectional design was used with a convenience sample of 237 people, aged 17-65, living in the community. The participants completed the Spanish version of the Leisure Assessment Inventory, and information about the personal and disability-related factors was obtained through a questionnaire. Multiple regression analyses were conducted to determine the personal factors, disability-related factors, and perceived barriers to leisure participation. The results show that participation in leisure activities is determined more by personal factors and perceived barriers than by disability-related factors.

Contributions of an artistic educational program for older people with early dementia: An exploratory qualitative study:

Objective: To describe a contemporary artistic educational program based on photographic cyanotype techniques and to present the results of the program carried out with older people with early dementia. We determined whether these people could participate in the program, their viewpoint about it, and what this program could contribute to their experience. Method: Twenty-one people diagnosed with mild or moderate dementia participated in a series of artistic education workshops. While conducting the workshops, participant observation was carried out, and the participants’ engagement was assessed. Upon completing the series, five focus groups were held with the participants with dementia, and another focus group with their professional caretakers. Results: We observed the participants’ high level of commitment to the activity and their interest in learning new things. We also observed the participants’ satisfaction during the creative process and with their results. The artistic activities not only reinforced the feelings of capacity of the participants with early dementia but also transmitted a positive image of them. Conclusions: Dementia was not an obstacle to participation in the program, which was an opportunity for creativity, learning, enjoyment, and communication for people with dementia. In the authors’ opinion, facilitating access to art and artistic education to people with early dementia can contribute to enforcing their rights and to improving the care system.

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.

Pain, motor function and health-related quality of life in children with cerebral palsy as reported by their physiotherapists

BackgroundChildren and adolescents with cerebral palsy suffer from higher levels of pain than their peers without disability. The aim of this study was to explore the impact of pain on health-related quality of life and motor function in individuals with cerebral palsy as reported by health professionals.MethodsCross-sectional study carried out in Associations for Care of Individuals with Cerebral Palsy and Related Disabilities (ASPACE) in Balearic Islands and Castile Leon (Spain). Thirty-five physiotherapists rated pain, health-related quality of life and motor function in 91 children and adolescents with cerebral palsy [8-19y]. A semi-structured interview was used to collect demographic and clinical data according with the Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE).ResultsPhysiotherapists reported that 51% of individuals with cerebral palsy suffered from pain. Physiotherapists also perceived that pain in individuals with cerebral palsy was responsible for reductions of psychological but not physical domains of health-related quality of life. According with physiotherapists’ estimations, motor impairment scores were not correlated with pain scores in individuals with cerebral palsy, but they were significantly associated with physical and autonomy domains of health-related quality of life.ConclusionsThese findings highlighted the importance of assessing and providing interventions for pain relief in persons with cerebral palsy even at an early age.

The Effect of a Program to Promote Play to Reduce Children's Post-Surgical Pain: With Plush Toys, It Hurts Less

Various nonpharmacological strategies to relieve hospitalized childrens pain propose play as a central element. Play is considered an essential resource to improve the negative psychosocial effects of the disease and the hospitalization itself. However, the empirical research of play in health settings has not received much attention. The goal of this study was to determine the effect of a program to promote play in the hospital on postsurgical pain in pediatric patients. The research hypothesis was that children will manifest less pain if they are distracted through play during the postsurgical period. We carried out a randomized parallel trial with two groups, an experimental group and a control group. The control group did not receive any specific treatment, only the standard attention contemplated in the hospital. The parents of the children from the experimental group received instructions to play with their children in the postsurgical period and specific play material with which to play. The results obtained support the research hypothesis. On average, the children from the experimental group scored lower on a pain scale than the children from the control group. This occurred in the three postsurgical measurements of pain. It is concluded that the program to promote play can decrease childrens perception of pain.

Cross‐cultural validation of the Children's Assessment of Participation and Enjoyment (CAPE) in Spain

BACKGROUND Despite growing interest in the topic of participation, the construct has not yet been assessed in children and adolescents with and without cerebral palsy (CP) in Spain. As there are no available instruments to measure participation in leisure activities which have been adapted in this country, the goal of this study was to validate a Spanish version of the Childrens Assessment of Participation and Enjoyment (CAPE). METHOD The sample comprised 199 children and adolescents with CP and 199 without CP, between 8 and 18 years of age, from seven regions in Spain. The adaptation of the original version of CAPE was carried out through translation and backward translation, and the validity of the instrument was analysed. Construct validity was assessed through the correlation of the diverse CAPE domains and the quality of life domains (KIDSCREEN questionnaire). Discriminant validity was established by comparing children and adolescents with CP and typically developing children and adolescents. For test-retest reliability, the children and adolescents with and without CP completed the CAPE questionnaire twice within 4 weeks. RESULTS The correlations found between the CAPE domains and the quality of life domains show that the CAPE presents construct validity. The CAPE discriminated children and adolescents with CP from those without any disability in the results of participation. According to most CAPE domains, typically developing children and adolescents engage in a greater number of activities than children and adolescents with CP. Test-retest reliability for the Spanish version of CAPE was adequate. CONCLUSION The study provides a valid instrument to assess the participation of children and adolescents with and without CP who live in Spain.

Confirmatory factor analysis of the supports intensity scale for children

Support needs assessment instruments and recent research related to this construct have been more focused on adults with intellectual disability than on children. However, the design and implementation of Individualized Support Plans (ISP) must start at an early age. Currently, a project for the translation, adaptation and validation of the supports intensity scale for children (SIS-C) is being conducted in Spain. In this study, the internal structure of the scale was analyzed to shed light on the nature of this construct when evaluated in childhood. A total of 814 children with intellectual disability between 5 and 16 years of age participated in the study. Their support need level was assessed by the SIS-C, and a confirmatory factor analysis (CFA), including different hypotheses, was carried out to identify the optimal factorial structure of this scale. The CFA results indicated that a unidimensional model is not sufficient to explain our data structure. On the other hand, goodness-of-fit indices showed that both correlated first-order factors and higher-order factor models of the construct could explain the data obtained from the scale. Specifically, a better fit of our data with the correlated first-order factors model was found. These findings are similar to those identified in previous analyses performed with adults. Implications and directions for further research are discussed.

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

Abstract 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.