Perceptions of people with intellectual and developmental disabilities about COVID-19 in Spain: a cross-sectional study.

BACKGROUND: As the world battles COVID-19, there is a need to study the perceptions of people with intellectual and developmental disabilities (IDD) about the effects of the pandemic and associated lockdown on their lives. This work explores the perceptions of Spaniards with IDD during the lockdown with respect to four topics: access to information, emotional experiences, effects on living conditions and access to support. METHODS: The topics were explored using a subset of 16 closed-ended questions from an online survey. In total, 582 participants with IDD completed the survey. The frequencies and percentages of responses to the questions were calculated, and chi-square tests performed to explore the relationship between participants' sociodemographic characteristics and responses. Given that people differed in the way in which they completed the survey, the relationship between participants' responses and completion method was also analysed. RESULTS: Participants reported that the pandemic and subsequent lockdown have had a deleterious effect on their emotional well-being (around 60.0% of participants) and occupations (48.0% of students and 72.7% of workers). Although access to information and support was reportedly good overall, being under the age of 21 years and studying were associated with perceptions reflecting poorer access to information (V = .20 and V = .13, respectively) and well-being support (V = .15 and V = .13, respectively). Being supported by a third party to complete the survey was consistently related to perceptions of worse outcomes. CONCLUSIONS: The study yielded data on the perceptions of people with IDD regarding the effects that COVID-19 and the subsequent lockdown have had on their lives. Suggestions on how to overcome the difficulties reported and future lines of research are discussed.

Advances in the assessment of self-determination: internal structure of a scale for people with intellectual disabilities aged 11 to 40.

BACKGROUND: Advances in theoretical frameworks of self-determination require the development of new assessment instruments. This study examines the dimensional structure of a self-determination scale and analyses the factorial invariance of its measurement across age and gender. METHOD: The AUTODDIS Scale was used to assess the self-determination of 541 people with intellectual disabilities aged from 11 to 40. RESULTS: Different models (correlational and hierarchical structures) of the scale were tested. The correlational model obtained from the exploratory structural equation model approach provided the best fit for the data. The results also supported measurement invariance across youths (aged 11 to 21 years) and adults (aged 21 to 40 years) and across genders. CONCLUSIONS: This study contributes to international research on self-determination and the development of assessment tools in this field, offering a better understanding of this multifaceted and complex construct. The results provide construct validity evidence regarding a new measurement tool tested across people aged 11 to 40, using information from third parties. However, further research is needed to explore the best ways to understand and assess the different factors related to self-determination.

The presence of IFL3/4 rs12979860 C allele influences the in vitro IP-10 production by mononuclear cells from patients with systemic lupus erythematosus.

OBJECTIVE: To explore whether the IFNL3/4 rs12979860 genotype may influence serum levels or production of interferon-inducible protein-10 (IP-10) by peripheral blood mononuclear cells from patients with systemic lupus erythematosus (SLE). METHODS: Sixty-six patients with SLE and 22 healthy blood donors (controls) were included. The IFNL3/4 rs12979860 polymorphism was genotyped by real-time polymerase chain reaction. IP-10 levels in sera supernatants of IFNα stimulated peripheral blood mononuclear cells were measured by enzime-linked immunosorbent assay. RESULTS: Allelic frequencies were CC (29%), CT (52%) and TT (20%) in SLE, and CC (32%), CT (41%) and TT (27%) in healthy controls. Median serum IP-10 levels were higher in SLE patients than in controls (190.8 versus 118.1 pg/ml; p < 0.001), particularly in those with high disease activity (278.5 versus 177.2 pg/ml; p = 0.037). However, serum IP-10 levels were not influenced by IFNL3/4 genotypes. Higher IP-10 production by peripheral blood mononuclear cells was found in both SLE patients (median 519.3 versus 207.6 pg/ml; p = 0.012) and controls (median 454.0 versus 201.7 pg/ml; p = 0.034) carrying the IFNL3/4 C allele compared with carriers of the T allele. CONCLUSIONS: Although IFNL3/4 rs12979860 allele C does not appear to influence serum IP-10 levels in SLE, it plays an important role in the production of IP-10 by peripheral blood mononuclear cells after IFNα stimulation.

Assessing support needs in children with intellectual disability and motor impairments: measurement invariance and group differences.

BACKGROUND: This study assessed the equivalence of the measurement of support needs between children with intellectual disability (ID) and children with intellectual and motor disabilities (IMD) and compared both groups in the different domains of support. METHOD: The Supports Intensity Scale-Children's Version was used to assess the support needs of 713 children with ID and 286 children with IMD, mainly associated with cerebral palsy. RESULTS: The results supported measurement invariance between the group of ID and IMD, which allowed to conduct comparison between them. Children with IMD scored higher on support needs than did children without IMD, suggesting that children with IMD needed more support than their peers without motor impairments. Furthermore, the ID levels interacted with motor impairments: at the highest levels of ID, groups tended to be similar in support needs, with high scores and low variability. The greatest differences were found in the domains of Home and Community activities. CONCLUSIONS: This study points to the across-condition of the construct of support needs in populations with intellectual and developmental disabilities. However, additional mobility impairments should be considered during the evaluation and planning of systems of support. In this regard, the Supports Intensity Scale-Children's Version might have limitations when discriminating between samples with high support needs.

Operationalisation of quality of life for adults with severe disabilities.

BACKGROUND: The operationalisation of quality of life for people with more severe disabilities has been acknowledged in the published research for more than two decades. This study aims to contribute to our knowledge and understanding of the quality of life of adults with severe disabilities by developing a set of quality of life indicators appropriate to this population using a Delphi method and the eight-domain conceptual model proposed by Schalock & Verdugo (2002). METHOD: The participating panel in the Delphi method included 12 experts who evaluated each proposed item according to four criteria: suitability, importance, observability and sensitivity. Descriptive analyses were used to select the best items in each of the four rounds of this Delphi study, as well as examining the coefficients of concordance that were calculated for the final pool of items. RESULTS: The four rounds of the Delphi study resulted in a final pool of 118 items (91 that were considered valid in the first round plus 27 items proposed, reformulated or discussed in the following rounds). Importance and sensitivity were the criteria that received the highest and lowest ratings, respectively, but also the ones that had the highest and lowest mean coefficients of concordance. Experts showed the strongest agreement for items related to material well-being, while the weakest was found for items related to personal development. CONCLUSIONS: This study further contributes to our understanding of how to operationalise and measure quality of life in adults with severe disabilities. The item pool generated may prove helpful in the development of instruments for the measurement of quality of life-related outcomes in this population.

Validity and reliability of the INICO-FEAPS Scale: An assessment of quality of life for people with intellectual and developmental disabilities.

This paper documents the validation of a comprehensive scale designed to assess quality-of-life related personal outcomes for people with intellectual and developmental disabilities who receive support in social organizations. The INICO-FEAPS Scale was administered to 1627 people whose ages ranged between 16 and 72 years old. The instrument comprises 72 parallel items organized around eight quality-of-life domains in each of the two forms: a self-report and a report by others. Several internal consistence indexes showed a good reliability of the scale. CFA was used to compare the goodness-of-fit to the data of alternative models. The eight-correlated first-order factors showed the best fit to the data in comparison to the unidimensional solution and hierarchical models. The instrument serves as a helpful tool for organizations to operate as bridges to the community, develop person-centered planning and individualized support, and implement evidence-based practices for quality improvement.

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 Children's 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.

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.

The concept of quality of life and its role in enhancing human rights in the field of intellectual disability.

BACKGROUND: The changed societal views of persons with disabilities are reflected in the 2006 United Nations Convention on the Rights of Persons with Disabilities. However, what is not specified in the Convention is how to operationalise and measure the Articles composing the Convention, and how to use that information to further enhance the human rights of persons with disabilities. METHOD: The authors analyse the relationships between eight core quality of life domains and the 34 Articles contained in the Convention. RESULTS: There is a close relationship between the core quality of life domains and the 34 Articles contained in the Convention. Furthermore, the current status of these Articles can be evaluated through the assessment of indicators associated with the eight core quality of life domains. CONCLUSIONS: Based on the assessment of these quality of life-related outcomes, three strategies can be used to enhance the human rights of persons with intellectual disability. These three are to employ person-centred planning, publish provider profiles and implement a system of support.

Sheltered Employment Centers: Characteristics and users' perception.

OBJECTIVE: To know the situation of Sheltered Employment Centers (CEE) in the Autonomous Community of Madrid. METHOD: A quantitative approach was developed by using a questionnaire which was sent to all the CEE. With this questionnaire we got information about the performance level of CEE. A qualitative approach was developed too by using an interview applied to a representative sample of users. With the interview we got information about users' perception and satisfaction. PARTICIPANTS: 73 centers from 175 (41.71%) participated in the quantitative approach. For the qualitative approach, 60 workers were selected from 1,899 (3.16%) in a randomized and stratified sample by age and gender. RESULTS: Users of CEE have most of them physical (38.41%) or intellectual (26.88%) disabilities, between 25 and 44 years old (65.44%) with permanent and full-time contract (64.17%). Satisfaction is very high (93.33%), mainly with the task (41.76%) and their coworkers (30.00%), and emphasizing that money is the least attractive feature (35.59%). CONCLUSIONS: CEE need to give careful thought to some of the key aspects of their makeup and practices. We would point out the need to make clear use of the personal and social adaptation services, act as routes for the transition to normalized employment.

Supported employment and job outcomes. Typicalness and other related variables.

The purpose of this study is to improve supported employment programs analyzing the relationships between different variables involved in its development on job outcomes. One important variable is typicalness (understood as the degree to which the job of the person with a disability is similar in its different characteristics to that of co-workers without a disability). It also compares sheltered employment and supported employment in employment outcomes. The results showed more length of service in the job and salary for supported employment workers. As regards the developmental variables, time of external support, type of support, and adaptations are critical to get better outcomes. Finally, the need to finely balance the typicalness of the job and the characteristics of the worker involved is stressed.

Quality of life and its measurement: important principles and guidelines.

BACKGROUND: The importance of the valid assessment of quality of life (QOL) is heightened with the increased use of the QOL construct as a basis for policies and practices in the field of intellectual disability (ID). METHOD: This article discusses the principles that should guide the measurement process, the major interrogatories (i.e. who, what, when, where, why, and how) of QOL measurement, issues and procedures in the cross-cultural measurement of QOL, and the current uses of QOL data. RESULTS: Based on the above methods, the article presents a number of important guidelines regarding QOL measurement. CONCLUSION: From a measurement perspective the use of the QOL construct is changing. Initially it was used as a sensitizing notion, social construct, and unifying theme. Increasingly, it is being used as conceptual framework for assessing quality outcomes, a social construct that guides quality enhancement strategies, and a criterion for assessing the effectiveness of those strategies. This new role places additional emphasis on the valid assessment of one's QOL.

Cross-cultural study of person-centred quality of life domains and indicators: a replication.

BACKGROUND: The increased use of the quality of life (QOL) concept internationally suggests the need to evaluate its etic (universal) and emic (culture-bound) properties. This study replicated and expanded a previous cross-cultural study on QOL. METHOD: The three respondent groups (consumers, parents and professionals; total n = 781) were from four European countries: France, Belgium, Italy and Poland. The Cross Cultural Survey of Quality of Life Indicators was used to assess the importance and use of eight core dimensions of QOL. Two hypotheses were tested: (1) the etic properties would be demonstrated if there were similar profiles for the respondent and geographical groups, and if indicators grouped into the proposed QOL domains; and (2) the emic properties would be demonstrated if there were significant differences on scores across groups. RESULTS: Results supported both hypotheses. CONCLUSION: The present study replicated the findings of a large cross-cultural study that the QOL construct has both etic and emic properties.

The relationship between quality of life and self-determination: an international study.

BACKGROUND: The aim of this study was to evaluate the relationship between self-determination and quality of life (QOL) of persons with intellectual disabilities (ID) living in four countries (Canada, United States, Belgium and France). METHOD: Participants were 182 adults with mild ID living in community settings (with families, living independently or in supported living environments). QOL was measured with the Quality of Life Questionnaire. Self-determination was measured using the Adult version of The Arc's Self-Determination Scale. Discriminant function and correlational analyses were conducted. RESULTS: Discriminant function analysis indicated that essential characteristics of self-determination predicted membership in the high QOL group and that overall self-determination and QOL were significantly correlated, as were sub-scale scores. CONCLUSIONS: The study replicates findings from a previous study with an international sample and confirms the importance of self-determination to enhance QOL. Subsequent research should examine the direction of the relationship between self-determination and QOL and examine the relationship of essential characteristics of self-determined behaviour and core domains of QOL in greater detail.

Factor structure of the Schalock and Keith Quality of Life Questionnaire (QOL-Q): validation on Mexican and Spanish samples.

BACKGROUND: The Quality of Life Questionnaire (QOL-Q) is used widely to evaluate the quality of life of persons with intellectual disability (ID). Its validity for use with Spanish-speaking cultures has been demonstrated for individuals with visual disabilities, but not for those with physical or intellectual disabilities. Such was the purpose of the present study. METHOD: Two samples were administered the QOL-Q under standardized procedures. The first sample was composed of 209 Mexican participants with physical disabilities; the second was composed of 424 Spanish participants with ID. The hypothesis tested was: the applicability (i.e. etic properties) of the measure across countries and respondents would be demonstrated if reliability data and if factor composition were similar to the original measure. Cronbach's alpha was used to test reliability and exploratory factor analyses were used to test validity (i.e. factor structure). RESULTS: Data indicated that the reliability and factor structure was similar to that reported in the questionnaire's standardization manual and consistent with that reported in a number of Anglo-Saxon countries. CONCLUSION: The present study offers additional support for the valid use of the QOL-Q with Spanish-speaking populations.

Spanish adaptation and validation of the Family Quality of Life Survey.

BACKGROUND: Assessing the quality of life (QOL) for families that include a person with a disability have recently become a major emphasis in cross-cultural QOL studies. The present study examined the reliability and validity of the Family Quality of Life Survey (FQOL) on a Spanish sample. METHOD AND RESULTS: The sample comprised 385 families who were administered the FQOL in Cali, Columbia. The FQOL showed adequate temporal stability (r = 0.68 on Importance and r = 0.78 on Satisfaction) and excellent internal consistency: Cronbach's alpha of 0.96 for Importance and 0.95 for Satisfaction. The confirmatory factor analysis yielded high fit indices, thus confirming that the factor structure of the FQOL as adapted for Spanish people fitted the five-factor model proposed by the survey's authors. CONCLUSIONS: The study provides a valid instrument for the research of the QOL of those families that have a child with a disability within Spanish-speaking community.

Seroprevalence of human Trypanosoma cruzi infection in diferent geografic zones of Chiapas, Mexico.

A serologic survey was carried out in four different geographic zones of Chiapas, Mexico. A total of 1,333 samples were collected from residents of thirteen communities located on the Coast, Central Mountain, Lacandon Forest and a zone called Mesochiapas. One hundred and fifty one seropositive individuals (11.3%) were identified. Human Trypanosoma cruzi infection was influenced by geography. In the Lacandon Forest and Central Mountains there was a higher seroprevalence 32.1 and 13.8% respectively, than on the coast (1.2%). In Mesochiapas there were no seropositive individuals among the 137 persons tested. An active transmission is probably continuing because seropositive cases (13.8%) were detected in children under 10 years of age. The vector recognized on the Coast was Triatoma dimidiata while in the Lacandon Forest it was Rhodnius prolixus.

Persistence of Trypanosoma cruzi in chronic chagasic cardiopathy patients.

BACKGROUND: Although patients with chronic chagasic cardiopathy do have a strong immune response against Trypanosoma cruzi, they have transient and low parasitemia as well as tissue amastigote nests. When conventional studies were carried out, demonstration of such abnormalities is minimally achieved. Molecular biology may provide the best tools to demonstrate parasite persistence, which could be pathogenic in this progressive disease. METHODS: We studied 16 patients with chronic chagasic cardiopathy (CCC) at the Instituto Nacional de Cardiología Ignacio Chávez in Mexico City. Patients had undergone a complete clinical evaluation, and had antibodies against Trypanosoma cruzi. They came from different rural areas in Mexico. Blood samples were obtained and processed for hemoculture and PCR technique. A CCC necropsy case was also sought for the presence of parasite antigen or DNA, using immunohistochemistry and PCR methods in archival tissues. RESULTS: Five of 16 (31%) hemocultures demonstrated circulating T. cruzi; 60% occurred in persons between 25 and 40 years old. In contrast, we found a positive PCR amplification in 81%; therefore, molecular biology tools appear to be more sensitive for demonstrating parasite persistence. There were no correlations between parasitemic state and clinical findings or specific antibody titer. The autopsy case had parasite antigens and DNA in heart tissues. CONCLUSIONS: Chronic chagasic cardiopathy patients do have persistence of parasite even when parasitemia is low or absent. The continuous presence of a parasite load could maintain immune stimulus and perhaps enhance a pathogenic immune or autoimmune tissue damage in susceptible hosts.

Research on mental retardation: an agenda for the future.

This article summarizes the results of a study carried out on 12 scientific journals that deal with research on mental retardation. The purpose was to analyze the type of research currently being published. Data shows that, although most of research on mental retardation from 1991 to June, 1999 agrees with the multidimensional system proposed by the AAMR in 1992, research still tends to focus on a psychopathological model when considering people with mental retardation. We conclude by offering several suggestions on the need for a collaborative approach between researchers and professionals and the benefits of developing a supportive culture for research.

The maltreatment of intellectually handicapped children and adolescents.

Eleven and a half percent of intellectually handicapped children in Castilla-León are subjected to maltreatment; in these, physical neglect is the most frequent. These findings come from a questionnaire (CEMND) specifically designed to detect and discover the prevalence of maltreatment in a sample of 445 mentally retarded children. It was discovered that problems between the child's parents, the child's behavior and the interaction between both aspects were significant factors in situations of maltreatment.