Sustainable Employability of People with Limited Capability for Work: The Participatory Development and Validation of a Questionnaire.

PURPOSE: Understanding sustainable employability (SE) of people with limited capability for work (LCW) due to physical or mental disability is crucial for the sustainable participation of this target group. Therefore, adequate measurement instruments for SE are needed. This study aims to validate a questionnaire to measure SE among people with LCW using a participatory approach, including person-job fit (PJ fit) and work-related sense of coherence (Work-SoC). METHODS: Existing scales for the main concepts were tested and adapted for face validity via cognitive interviews (n = 6), with the involvement of a co-researcher with LCW in the research team. Next, the questionnaire was administered among people with LCW (n = 248) to assess its factor structure (Confirmatory Factor Analysis) and reliability (Cronbach's alpha). RESULTS: Analysis of the cognitive interviews identified problems with clarity and readability of items, instructions and response categories of used (existing) scales. The main adjustments concerned the shortening of text length, the usage of familiar language and examples, and the addition of an introduction game. Most of the adapted SE indicator scales showed an overall good fit and acceptable-to-good internal reliability. The overall SE model had an overall good fit, and excluding 'internal employability' further improved this fit. PJ fit and Work-SoC had an acceptable/good model fit and internal consistency. CONCLUSION: The participatory validation process resulted in a validated and comprehensive questionnaire to measure SE, PJ fit and Work-SoC among people with LCW, which enables research into the development of their SE. This questionnaire can be utilised to contribute to a more inclusive labour market.

Mortality of people with intellectual disabilities during the 2017/2018 influenza epidemic in the Netherlands: potential implications for the COVID-19 pandemic.

BACKGROUND: Data on the development of Covid-19 among people with intellectual disabilities (IDs) are scarce and it is uncertain to what extent general population data applies to people with ID. To give an indication of possible implications, this study investigated excess mortality patterns during a previous influenza epidemic. METHODS: Using Dutch population and mortality registers, a historical cohort study was designed to compare mortality during the 2017-2018 influenza epidemic with mortality in the same period in the three previous years. People with ID were identified by entitlements to residential ID-care services as retrieved from a national database. RESULTS: Data covered the entire adult Dutch population (12.6 million; GenPop), of which 91 064 individuals were identified with an ID. During the influenza epidemic, mortality among people with ID increased almost three times as much than in the GenPop (15.2% vs. 5.4%), and more among male individuals with ID (+19.5%) than among female individuals with ID (+10.6%), as compared with baseline. In both cohorts, comparable increases in mortality within older age groups and due to respiratory causes were seen. Particularly in the ID-cohort, excess deaths also occurred in younger age groups, due to endocrine diseases and ID-specific causes. CONCLUSIONS: During the 2017-2018 influenza epidemic, excess mortality among people with ID was three times higher than in the general Dutch population, appeared more often at young age and with a broader range of underlying causes. These findings suggest that a pandemic may disproportionally affect people with ID while population data may not immediately raise warnings. Early detection of diverging patterns and faster implementation of tailored strategies therefore require collection of good quality data.

Towards healthy settings for people with intellectual disabilities.

People with intellectual disabilities (ID) depend on their environment for support to live healthily. The characteristics of healthy settings for people with ID are unknown. This study aims to conceptualize healthy settings for people with ID by conducting an international and multidisciplinary concept mapping study. As theoretical framework the settings approach, an ecological model with a whole system focus toward health promotion, was used. The integrative mixed-methods approach of this study involved concept mapping with researchers specialized in healthcare for people with ID and researchers specialized in healthy settings. The 41 participants generated statements that were later sorted and rated. Findings encompass 13 clusters relating to the social environment, the physical environment and societal preconditions. Specific factors of healthy settings for people with ID include: (i) universal design of the physical environment, (ii) the role of care professionals in the social environment to empower people with ID, (iii) possibilities for care providers to contribute to a health-promoting setting and (iv) preconditions that allow people to engage in society. These factors can be used in strategies to apply the approach in practice and give directions to put in place policies on developing enabling environments and decreasing health inequities.

A consensus statement on how to conduct inclusive health research.

BACKGROUND: The active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research. METHOD: A total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round. RESULTS: This consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research. CONCLUSIONS: Consensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

Stakeholder expectations, roles and responsibilities in Dutch health promotion for people with intellectual disabilities.

This two-phase, qualitative study aims to obtain an overview of stakeholders in the network of people with intellectual disabilities (ID) and their perceived facilitating and hindering factors, expectations, and perceived roles and responsibilities with regard to health promotion. In phase 1, four workshops were conducted to provide insight into involved stakeholders. In phase 2, 29 semi-structured interviews were conducted with stakeholders regarding their views on health promotion. Data were analysed using stakeholder matrices and a combination of domain and thematic analysis. Daily caregivers were identified as the most important and influential stakeholders. Interviewed stakeholders perceived barriers to a healthy lifestyle as relating mainly to the person with ID and, although they stated that people with ID need support to be able to live healthily, there was ambiguity about roles and responsibilities for providing this support. Daily caregivers are not properly facilitated to support a healthy lifestyle. Stakeholders expressed the need for a culture change towards a greater health promotion ethos in care for people with ID. A facilitating context is needed in which the social network supports autonomy and offers opportunities to adapt to physical, social and emotional challenges. Stakeholders see the importance of, and are willing to support, healthy behaviour. They are hindered by a lack of a shared vision and united system in which all stakeholders know their roles and responsibilities. Promotion of a healthy lifestyle should be part of every service provider employee's job and propagated throughout the organization as part of its mission and vision.

Exploring academics' views on designs, methods, characteristics and outcomes of inclusive health research with people with intellectual disabilities: a modified Delphi study.

BACKGROUND: The British Medical Journal's (BMJ's) patient revolution strives for collaboration with patients in healthcare and health research. This paper studies collaboration with people with intellectual disabilities (ID) in health research, also known as inclusive health research. Currently, transparency and agreement among academics is lacking regarding its main aspects, preventing upscaling of the patient revolution. OBJECTIVE: This study aims to gain agreement among academics on 3 aspects of inclusive health research for people with ID: (1) designs and methods, (2) most important characteristics and (3) outcomes. DESIGN: A Delphi study was conducted with academics with experience in inclusive (health) research and on people with ID. The study consisted of 2 sequential questionnaire rounds (n=24; n=17), followed by in-depth interviews (n=10). RESULTS: Academics agreed on (1) a collaborative approach to be most suitable to inclusive health research, (2) characteristics regarding the accessibility and facilitation of inclusive health research, and (3) several outcomes of inclusive health research for people with ID and healthcare. Other characteristics agreed on included: atmosphere, relationship, engagement, partnership and power. It was stressed that these characteristics ensure meaningful inclusion. Interviewed academics voiced the need for a tool supporting the facilitation and evaluation of inclusive health research. There was ambiguity as to what this tool should comprise and the extent to which it was possible to capture the complex process of inclusive health research. DISCUSSION AND CONCLUSIONS: This study underlines the need for transparency, facilitation and evaluation of inclusive health research. The need for in-depth interviews after 2 Delphi rounds underlines its complexity and context dependence. To increase process transparency, future research should focus on gaining insight into inclusive health research in its context. A tool could be developed to facilitate and evaluate inclusive health research. This tool will be partially applicable to participatory research in general and thereby upscale the patient revolution.

Healthy living according to adults with intellectual disabilities: towards tailoring health promotion initiatives.

BACKGROUND: A healthy lifestyle can prevent several health problems experienced by adults with intellectual disabilities (ID). For the development of effective and usable health promoting interventions for people with ID, the perspective of the intended audience should be taken into account. The aim of this qualitative study was to gain insight into the perspectives of people with mild to moderate ID on healthy living. METHOD: Qualitative study. Five semi-structured focus groups were conducted with a total of 21 adults with mild to moderate ID in the Netherlands. Discussions focused on three main themes: (1) perceptions of own health, (2) what participants consider as healthy living and (3) factors experienced to be related to the ability to live healthily. Interviews were analysed thematically resulting in two main domains: (1) perceptions of what is healthy and unhealthy and (2) factors that participants experience to be related to their ability to live healthily. RESULTS: For participants, healthy living entails more than healthy food and exercising: feeling healthy, happiness and level of independence are perceived as important as well. Factors experienced to relate to their ability to live healthily were (a lack of) motivation, support from others and environmental factors such as available health education, (a lack of) facilities and a(n) (dis)advantageous location of work or residence. CONCLUSIONS: This qualitative study shows that adults with mild to moderate ID have a good understanding of what being healthy and living healthily constitute. As they face several difficulties in their attempts to live healthily, existing health promotion programmes for people with ID must be tailored to individual preferences and motivations and adapted for individual physical disabilities. Moreover, because of their dependency on others, tailoring should also be focused on the resources and hindering factors in their physical and social environment.

Health information exchange in general practice care for people with intellectual disabilities--a qualitative review of the literature.

Many barriers to the provision of general practice (GP) care for people with intellectual disabilities (ID) relate to problems in exchanging health information. Deficits in the exchange of health information may have an adverse impact on healthcare access and health outcomes in individuals with ID. The aim of this paper is to report how health information exchange (HIE) in GP care for people with ID is being described in the ID healthcare literature. Thematic analysis of 19 included articles resulted in six major themes: (1) communication skills; (2) organisational factors; (3) record keeping and sharing; (4) health literacy and self-advocacy; (5) carers and health professionals' knowledge; and (6) third parties. The results indicate that HIE takes place in a chain of events happening before, during, and after a medical consultation, depending on specific contextual care factors. The included papers lack a broad focus on the entire HIE process, and causes and effects of gaps in health information are described only marginally or on a very general level. However, a study of the HIE process in its entirety is imperative in order to identify weak links and gaps in information pathways. The themes presented here provide a starting point for an in-depth study on the HIE process in GP care for individuals with ID that may facilitate future research on health interventions in this setting.