Applicability of the post-traumatic stress disorder gate criterion in people with mild to moderate intellectual disabilities: Do additional adverse events impact current symptoms of Post Traumatic Stress Disorder in people with intellectual disabilities?

BACKGROUND: Diagnostic manuals provide a strict definition of the PTSD gate criterion. Research on the adequacy of this definition in people with intellectual disabilities is lacking. This study aims to test the adequacy of the gate criterion for this population. METHOD: Fourty nine adults with mild to moderate intellectual disabilities and 43 caregivers were questioned. Traumatic events included in the gate criterion definition and adverse events going beyond it were assessed. It was tested whether adverse events affect symptoms of PTSD additionally to traumatic events. RESULTS: The current data showed ambiguous findings in self- and informant report. Informant data suggested an additional impact of adverse events on PTSD symptoms. Self-report data suggested the contrary. CONCLUSION: Adverse events seem to have an impact on externalizing behavioural symptoms, such as hyperarousal. Self-report assessment of more specific, intrapsychic PTSD symptoms, such as intrusions and avoidance, should be addressed in future studies.

Trauma exposure and post-traumatic stress disorder in people with intellectual disabilities: A Delphi expert rating.

BACKGROUND: There is a lack of research on trauma in people with intellectual disabilities. This study assessed expert consensus on the traumatic potential of a broader range of adverse life events, and differences in symptom manifestation and behavioural symptom equivalents of post-traumatic stress disorder (PTSD) symptoms. METHOD: The present authors conducted a three-step Delphi survey using a mixed-methods design. Twenty-nine expert raters participated in the survey, and 16 persisted to the final round. Consensus was calculated using the interquartile range. RESULTS: Traumatic potential was attributed to adverse life events, particularly revolving around sexuality and autonomy. DSM-5 symptoms of PTSD were rated as partially adequate, with behavioural symptom expression being the main difference to the general population. CONCLUSION: The range of traumatic events should be broadened for people with intellectual disabilities. A specific subset of events need to be defined in future research. Detection of PTSD depends upon determining specific symptom correlates of challenging behaviour.

Job Satisfaction, Quality of Work Life and Work Motivation in Employees with Intellectual Disability: A Systematic Review.

BACKGROUND: Current research on employment options for people with Intellectual Disability emphasizes the importance of employee needs and satisfaction. The study aims at systematically reviewing the literature on job satisfaction and related constructs. METHODS: A systematic literature search was conducted. Studies were included if (i) they are specific to effects of work, (ii) assessed variables are related to job satisfaction, QoWL, attitudes towards work or work motivation and if (iii) studies reported intellectual disability-specific results. Twenty-three studies met the inclusion criteria. Findings were classified according to the socio-cognitive model of job satisfaction. RESULTS: Current literature suggests high job satisfaction in people with intellectual disability. Predictors of job satisfaction are similar to people without disabilities, albeit the importance of factors differs. CONCLUSIONS: Stronger consideration of well-established theories and measures from organizational psychology would enhance future research. Findings indicate that high satisfaction ratings might result from lack of control over vocational decisions.

Assessment of job satisfaction in people with intellectual disabilities: Towards best-practice recommendations.

BACKGROUND: The current body of research on job satisfaction of people with intellectual disability is based on highly diverse measures, originating both from the general population and people with intellectual disability. This heterogeneity represents a possible confounder. Best-practice approaches for the assessment of job satisfaction are hence needed. METHOD: Using systematic literature review, job satisfaction measures were identified and analyzed with regard to their applicability for people with intellectual disability. Identified best-practice measures (JDI/JIGS as well as RSM-WS) were subsequently applied in the course of a pilot study with 129 employees of sheltered workshops. Comprehension, reliability and validity were assessed. RESULTS: The three identified instruments exhibit high reliability and validity. Comprehension was sufficient for JDI and JIGS but better for RSM-WS. CONCLUSIONS: The JDI/JIGS represent a feasible measures of job satisfaction allowing for comparisons with the general population. In samples with more severe intellectual disabilities, the RSM-WS is preferable.

The Employers' perspective on barriers and facilitators to employment of people with intellectual disability: A differential mixed-method approach.

BACKGROUND: Obtaining employment is among the most important ambitions of people with intellectual disability. Progress towards comprehensive inclusive employment is hampered by numerous barriers. Limited research is available on these barriers and strategies to overcome them. METHOD: A mixed method approach in a sample of 30 HR-managers was used to assess (i) differences in perceived barriers for employment of people with specific disabilities and mental disorders; (ii) barriers specific to employing people with intellectual disability; (iii) strategies to overcome these barriers. RESULTS: Employers perceive more barriers for hiring people with intellectual disability and mental disorders than for physical disabilities. Employment for this population is hampered by a perceived lack of skills and legal issues. Strategies perceived as beneficial are supplying information, changes in organizational strategies and legal changes. CONCLUSIONS: Employers' differentiated expectations and reservations towards hiring individuals with specific disabilities need to be taken into account to increase employment for people with intellectual disability.

Evaluation of an integrated system for classification, assessment and comparison of services for long-term care in Europe: the eDESDE-LTC study.

BACKGROUND: The harmonization of European health systems brings with it a need for tools to allow the standardized collection of information about medical care. A common coding system and standards for the description of services are needed to allow local data to be incorporated into evidence-informed policy, and to permit equity and mobility to be assessed. The aim of this project has been to design such a classification and a related tool for the coding of services for Long Term Care (DESDE-LTC), based on the European Service Mapping Schedule (ESMS). METHODS: The development of DESDE-LTC followed an iterative process using nominal groups in 6 European countries. 54 researchers and stakeholders in health and social services contributed to this process. In order to classify services, we use the minimal organization unit or "Basic Stable Input of Care" (BSIC), coded by its principal function or "Main Type of Care" (MTC). The evaluation of the tool included an analysis of feasibility, consistency, ontology, inter-rater reliability, Boolean Factor Analysis, and a preliminary impact analysis (screening, scoping and appraisal). RESULTS: DESDE-LTC includes an alpha-numerical coding system, a glossary and an assessment instrument for mapping and counting LTC. It shows high feasibility, consistency, inter-rater reliability and face, content and construct validity. DESDE-LTC is ontologically consistent. It is regarded by experts as useful and relevant for evidence-informed decision making. CONCLUSION: DESDE-LTC contributes to establishing a common terminology, taxonomy and coding of LTC services in a European context, and a standard procedure for data collection and international comparison.

The "Sense of Coherence" and the coping capacity of patients with Parkinson disease.

BACKGROUND: Antonovsky's salutogenic model of the "Sense of Coherence" (SOC) is an important resource in dealing with chronic diseases. The aim of this study was to investigate SOC as a psychological factor and its correlation with illness, subjective well-being, and health-related quality of life (QoL) in patients with Parkinson disease (PD) compared to patients with other chronic diseases. METHODS: Fifty-one patients suffering from PD and 59 participants with other chronic non-neurological diseases took part in this study. The PD patients were assessed through medical routine examinations and all participants were asked to complete several questionnaires for psychological assessment. In order to compare controls with the PD group, t-tests, U-tests, and multivariate analysis were conducted. Multiple regression analysis was calculated to identify predictor variables. RESULTS: Patients with PD were characterized by lower SOC and higher scores concerning depression compared to the control group (CG). Furthermore, the PD group showed fewer active coping strategies and lower scores concerning well-being. There were correlations between depression, coping, well-being and QoL, and SOC. The SOC had a particular predictive value with regards to the outcome "quality of life" and coping strategies. CONCLUSIONS: There are a number of differences regarding psychological characteristics of coping mechanisms in neurological and non-neurological patients. The SOC correlated with several psychological factors; however, there was no correlation with medical data. The SOC predicts scores pertaining coping mechanism and health-related QoL.

Social reactions to disclosure of sexual violence in female adults with mild to moderate intellectual disabilities: a qualitative analysis of four cases.

Socio-interpersonal factors have a strong potential to protect individuals against pathological processing of traumatic events. While perceived social support has emerged as an important protective factor, this effect has not been replicated in people with intellectual disabilities (ID). One reason for this might be that the relevance of socio-interpersonal factors differs in people with ID: Social support may be associated with more stress due to a generally high dependency on sometimes unwanted support. An exploration of the role of posttraumatic, socio-interpersonal factors for people with ID is therefore necessary in order to provide adequate support. The current study aims to explore the subjective perception of social reactions to disclosure of sexual violence in four women with mild to moderate ID. The study was conducted in Austria. The women were interviewed about their perception of received social reactions as benevolent or harmful, their emotional response, and whether they perceived being treated differently due to their ID diagnosis. The interviews were analysed using qualitative content analysis. First, the interviews were coded inductively, and social reactions were then deductively assigned to three categories that were derived from general research: positive reactions, unsupportive acknowledgement, turning against. Findings on the perception of social reactions were in line with findings from the general population. Overall, participants reported that they did not feel that they were treated any differently from persons without disabilities. However, the social reactions they received included unjustified social reactions, such as perpetrators not being held accountable. A possible explanation may be a habituation and internalisation of negative societal attitudes towards women with ID. Empowerment programmes and barrier-free structural support for women with ID following trauma exposure should be improved.

The Effects and Costs of Personalized Budgets for People with Disabilities: A Systematic Review.

This article reviews the peer-reviewed and grey literature published from January 1985 to November 2022 that has quantitatively evaluated the effects of personalized budgets for people with disabilities (PwDs), in terms of a range of benefit and cost outcomes. Benefit metrics of interest comprised measures of well-being, service satisfaction and use, quality of life, health, and unmet needs. A search was conducted using the PsycINFO, MEDLINE, CINAHL, ASSIA, and Social Care Online databases. Based on inclusion criteria and a quality assessment using the Downs and Black Checklist, a final count of 23 studies were identified for in-depth review. Given the heterogeneous nature of the studies, a narrative synthesis, rather than a formal meta-analysis, was undertaken. Taking the relatively scarce and often methodologically limited evidence base at face value, the findings suggest that-overall-personalized budget users tend to benefit in terms of well-being and service satisfaction outcomes, with the exception of mixed effects for people with mental health conditions. Only a minority of studies have investigated the cost-effectiveness or costs-only of personalized budgets, finding mixed results. Two out of the three cost-effectiveness studies find personal budgets to be more cost-effective than alternative options, meaning that the possibly higher costs of personalized budgets may be more than outweighed by additional benefits. Some evidence looking at service use and/or costs only also points to significant reductions in certain service use areas, which at least hints at the potential that personalized budgeting may-in some cases-entail reduced costs. Further research is needed to explore the generalizability of these conclusions and to better capture and understand the factors driving the observed heterogeneity in some of the results.

Satisfaction with life in Special Olympic athletes: the role of autonomy support and basic need fulfilment.

Aims: Athletes in the general population report higher satisfaction of basic needs when coaches are providing an autonomy supportive sport climate (ASSC). Our study aims at investigating whether ASSC is associated with satisfaction with life in athletes with intellectual disabilities (ID) and whether this association is mediated by basic need satisfaction. Method: During the Special Olympics World Winter Games 2017, 168 athletes with ID (M = 33.86 years; SD = 10.47) completed questionnaires measuring ASSC, basic need satisfaction (autonomy, competence, and relatedness), and satisfaction with life. Multiple linear regression analyses and mediation analyses were performed. The mediation model was controlled for the potential impact of participating in team vs. individual sports. Additionally, gender effects were explored. Results: ASSC was significantly associated with satisfaction with life (ß = .38, p < .001). This association was mediated by competence (indirect effect: ab1 = .15; CI [.05; .32]) but not by autonomy or relatedness. No effects were found related to participating in team vs. individual sports or gender. Conclusions: Our study provides evidence that an ASSC is associated with athletes perceiving themselves as more competent and reporting more satisfaction with life.

Ageing and health status in adults with intellectual disabilities: results of the European POMONA II study.

BACKGROUND: POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). METHOD: The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. RESULTS: Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. CONCLUSIONS: Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.

Do subjective memory complaints predict senile Alzheimer dementia?

Many elderly complain about their memory and undergo dementia screening by the Mini-Mental State Examination (MMSE). While objective memory impairment always precedes Alzheimer dementia (AD) it is unclear whether subjective memory complaints are predicting AD. We tried to answer this question in a prospective cohort study. The 75-years old non-demented inhabitants of Vienna-Transdanube were investigated for conversion to AD after 30 months. The predictive value of subjective memory complaints was analysed in two groups: subjects with high MMSE-score (28-30) and subjects with low MMSE-score (23-27). Only in subjects with high MMSE univariate analyses showed an association between subjective memory complaints and incident AD. In both groups the verbal memory test was the main predictor of AD in multivariate analyses. We suggest to perform memory testing in subjects complaining about memory irrespective of their performance in a screening procedure like the MMSE.

Reliability and validity of the Older Americans Resources and Services (OARS) social resources scale in six European countries.

OBJECTIVES: The purpose of this article is to examine data quality, reliability, and construct validity of the Older Americans Resources and Services social resources scale in six European countries (The Netherlands, Luxembourg, Italy, Austria, the United Kingdom, and Sweden). METHODS: A questionnaire was administered through face-to-face interviews in five countries, and postal interview in the sixth, to representative populations of adults aged 50 to 90 living independently (N = 12,478). This article examines missing values and distribution of items in the social resources scale, and consistency of skew and kurtosis across countries. We performed item-total correlations and ran confirmatory factor analyses to test a three-factor model obtained in previous U.S. and Spanish analyses. Cronbach's alpha determined the reliability of the factors. RESULTS: We observed a relatively large proportion of missing data for one item (have someone who would help you). All items correlated with a score equal to or greater than 0.20. Although the confirmatory factor analyses generally supported the acceptability of the three-factor structure in the European data, the reliability of two dimensions (dependability and affective) was unacceptably low. DISCUSSION: Differences across countries make it unlikely that researchers can develop a single social resources scale that would have item equivalence in multiple countries.

The Vienna Frailty Questionnaire For Persons with Intellectual Disabilities--Revised.

Frailty is a theoretical concept used to track individual age-related declines. Persons with intellectual disabilities (ID) often present with pre-existing deficits that would be considered frailty markers in the general population. The previously developed Vienna Frailty Questionnaire for Persons with ID (VFQ-ID) was aimed at assessing frailty in this specific population. However, findings of the initial frailty study in 2007 revealed some weaknesses. This paper reports on the development of the Vienna Frailty Questionnaire for Persons with ID - Revised (VFQ-ID-R) as well as its first application and psychometric evaluation. The authors re-administered the VFQ-ID-R to participants with ID who had been assessed with the VFQ-ID in 2007. The goal was to study the factor structure and reliability of the revised test. Internal consistency of the VFQ-ID-R was found to be very good for the entire scale and was moderate for the four domains of the scale. Inter-rater reliability and retest reliability were found to be good. The revisions made to the VFQ-ID will be useful in assessing and supporting ageing individuals with ID.

A systematic review on assessment instruments for dementia in persons with intellectual disabilities.

AIM: This work describes an extensive systematic literature review on assessment instruments for dementia in persons with intellectual disability (ID). Existing instruments for the detection of dementia in persons with ID were collected and described systematically. This allows a direct and quick overview of available tools. Additionally, it contributes to the availability and usability of information about these instruments, thus enhancing further developments in this field. METHODS: A systematic literature search in five databases (CINAHL, PsycInfo, PubMed, Scopus, and Web of Science) was conducted. In order to include gray literature an invisible college approach was used. Relevant studies were identified and selected using defined inclusion and exclusion criteria. After the selection process all instruments were coded and classified. It was determined which concepts they assess, whether they were especially developed or adapted for persons with ID, and whether they were designed to assess dementia. The selection of relevant papers, as well as the coding of instruments was done independently by two researchers. RESULTS: In total, 97 records met the search criteria. Out of these, 114 different instruments were extracted. There were 79 instruments to be completed by the person with ID, and 35 informant-based instruments. Additionally, four test batteries were found. Some of these instruments were neither designed for the assessment of dementia, nor for persons with ID. CONCLUSIONS: There are a variety of different tools used for the assessment of dementia in ID. Nevertheless, an agreed-upon approach or instrument is missing. Establishing this would improve the quality of assessment in clinical practice, and benefit research. Data collected would become comparable and combinable, and allow research to have more informative value.

Psychometric properties and norms of the German ABC-Community and PAS-ADD Checklist.

AIM: The aim of the present study was to standardize and generate psychometric evidence of the German language versions of two well-established English language mental health instruments: the Aberrant Behavior Checklist-Community (ABC-C) and the Psychiatric Assessment Schedule for Adults with Developmental Disabilities (PAS-ADD) Checklist. New methods in this field were introduced: a simulation method for testing the factor structure and an exploration of long-term stability over two years. METHODS: The checklists were both administered to a representative sample of 270 individuals with intellectual disability (ID) and, two years later in a second data collection, to 128 participants of the original sample. Principal component analysis and parallel analysis were performed. Reliability measures, long-term stability, subscale intercorrelations, as well as standardized norms were generated. Prevalence of mental health problems was examined. RESULTS: Psychometric properties were mostly excellent, with long-term stability showing moderate to strong effects. The original factor structure of the ABC-C was replicated. PAS-ADD Checklist produced a similar, but still different structure compared with findings from the English language area. The overall prevalence rate of mental health problems in the sample was about 20%. CONCLUSION: Considering the good results on the measured psychometric properties, the two checklists are recommended for the early detection of mental health problems in persons with ID.

Sampling and ethical issues in a multicenter study on health of people with intellectual disabilities.

OBJECTIVES: To study health inequalities in persons with intellectual disabilities, representative and unbiased samples are needed. Little is known about sample recruitment in this vulnerable group. This study aimed to determine differences in ethical procedures and sample recruitment in a multicenter research on health of persons with intellectual disabilities. Study questions regarded the practical sampling procedure, how ethical consent was obtained in each country, and which person gave informed consent for each study participant. STUDY DESIGN AND SETTING: Exploratory, as part of a multicenter study, in 14 European countries. After developing identical guidelines for all countries, partners collected data on health indicators by orally interviewing 1,269 persons with intellectual disabilities. Subsequently, semistructured interviews were carried out with partners and researchers. RESULTS: Identification of sufficient study participants proved feasible. Sampling frames differed from nationally estimated proportions of persons with intellectual disabilities living with families or in residential settings. Sometimes, people with intellectual disabilities were hard to trace. Consent procedures and legal representation varied broadly. Nonresponse data proved unavailable. CONCLUSION: To build representative unbiased samples of vulnerable groups with limited academic capacities, international consensus on respectful consent procedures and tailored patient information is necessary.

Austria.

In the past two decades, national as well as regional policy agendas for people with disabilities and especially people with intellectual disabilities have followed strategies of inclusion and rights, with the promotion of a community-based approach.

Life satisfaction in 6 European countries: the relationship to health, self-esteem, and social and financial resources among people (Aged 65-89) with reduced functional capacity.

The aim of this study was to investigate how overall health, participation in physical activities, self-esteem, and social and financial resources are related to life satisfaction among people aged 65 and older with reduced activities of daily living (ADL) capacity in 6 European countries. A subsample of the European Study of Adults' Well-Being (ESAW), consisting of 2,195 people with reduced ADL capacity from Sweden, the United Kingdom, the Netherlands, Luxembourg, Austria, and Italy, was included. The Older Americans' Resources Schedule (OARS), the Life Satisfaction Index Z, and the Self-Esteem Scale were used. In all national samples, overall health, self-esteem, and feeling worried, rather than ADL capacity, were significantly associated with life satisfaction. The findings indicate the importance of taking not only the reduction in functional capacity into account but also the individual's perception of health and self-esteem when outlining health care and nursing aimed at improving life satisfaction. The study thus suggests that personal rather than environmental factors are important for life satisfaction among people with reduced ADL capacity living in Europe.