Improving Environmental Capacities for Health Promotion in Support Settings for People with Intellectual Disabilities: Inclusive Design of the DIHASID Tool

People with intellectual disabilities (ID) have unhealthier lifestyles than the general population. To sustainably improve their lifestyle and health status, a whole-system approach to creating healthy environments is crucial. To gain insight into how support for physical activity and healthy nutrition can be embedded in a setting, asset mapping can be helpful. Asset mapping involves creating a bottom–up overview of promoting and protective factors for health. However, there is no asset mapping tool available for ID support settings. This study aims to develop an asset mapping tool in collaboration with people with ID to gain insight into assets for healthy nutrition and physical activity in such settings. The tool is based on previous research and development continued in an iterative and inclusive process in order to create a clear, comprehensive, and usable tool. Expert interviews (n = 7), interviews with end-users (n = 7), and pilot testing (n = 16) were conducted to refine the tool. Pilot participants perceived the tool as helpful in pinpointing perceived assets and in prompting ideas on how to create inclusive environments with support for physical activity and healthy nutrition. This overview of assets can be helpful for mobilizing assets and building the health-promoting capacities of ID support settings

Depression after low-energy fracture in older women predicts future falls: a prospective observational study

<p>Abstract</p> <p>Background</p> <p>Falls are one of the main causes of fractures in elderly people and after a recent fracture, the risk of another fall is increased, resulting in subsequent fracture. Therefore, risk factors for future falls should be determined. We prospectively investigated the relationship between depression and the incidence of falls in post-menopausal women after a low-energy fracture.</p> <p>Methods</p> <p>At baseline, 181 women aged 60 years and older who presented with a recent low-energy fracture were evaluated at the fracture and osteoporosis outpatient clinics of two hospitals. As well as clinical evaluation and bone mineral density tests, the presence of depression (measured using the Edinburgh Depression Scale, EDS, depression cut-off > 11) and risk factors for falling were assessed. During two years of follow-up, the incidence of falls was registered annually by means of detailed questionnaires and interviews.</p> <p>Results</p> <p>Seventy-nine (44%) of the women sustained at least one fall during follow-up. Of these, 28% (<it>n </it>= 22) suffered from depression at baseline compared to 10% (<it>n </it>= 10) of the 102 women who did not sustain a fall during follow-up (<it>Χ</it>²= 8.76, df = 1, <it>p </it>= .003). Multiple logistic regression showed that the presence of depression and co-morbidity at baseline were independently related to falls (OR = 4.13, 95% CI = 1.58-10.80; OR = 2.25, 95% CI = 1.11-4.56, respectively) during follow-up.</p> <p>Conclusions</p> <p>The presence of depression in women aged 60 years and older with recent low-energy fractures is an important risk factor for future falls. We propose that clinicians treating patients with recent low-energy fractures should anticipate not only on skeletal-related risk factors for fractures, but also on fall-related risk factors including depression.</p

Self-reported measures in health research for people with intellectual disabilities : An inclusive pilot study on suitability and reliability

Background: The lack of suitable and reliable scales to measure self-reported health and health behaviour among people with intellectual disabilities (ID) is an important methodological challenge in health research. This study, which was undertaken together with co-researchers with ID, explores possibilities for self-reported health scales by adjusting, testing, and reflecting on three self-reported health scales. Methods: In an inclusive process, the researchers and co-researchers with ID adjusted the SBQ (sedentary behaviour), SQUASH (physical activity), and SRH (self-reported health) scales, after which a test-retest study among adults with ID was performed. Test outcomes were analysed on suitability and test-retest reliability, and discussed with the co-researchers with ID to reflect on outcomes and to make further recommendations. Results: Main adjustments made to the scales included: use easy words, short sentences, and easy answer formats. Suitability (N = 40) and test-retest reliability (N = 15) was higher for the adjusted SQUASH (SQUASH-ID), in which less precise time-based judgements are sought, than in the adjusted SBQ (SBQ-ID). Suitability and test-retest reliability were fair to moderate for the SRH-ID and CHS-ID. The main outcome from the reflection was the recommendation to use SQUASH-ID answer options, in which less precise time-based judgements were sought, in the SBQ-ID as well. Conclusions: This study served as a pilot of an inclusive process in which people with ID collaborated in adjusting, testing, and reflecting on self-reported health scales. Although the adjusted self-reported measurements may be reliable and suitable to the target group, the adjustments needed may impair measurement precision. This study's results contribute to informed decision making on the adaptation and use of self-reported health scales for people with ID.</p

The concept of health for people with an intellectual disability. A scoping review protocol.

The aim of this scoping review is to provide an overview of current conceptualizations of health for people with intellectual disabilities (ID), to inform the development of a tailored and dynamic health concept for people with ID

Toward Inclusive Approaches in the Design, Development, and Implementation of eHealth in the Intellectual Disability Sector: Scoping Review

BackgroundThe use of eHealth is more challenging for people with intellectual disabilities (IDs) than for the general population because the technologies often do not fit the complex needs and living circumstances of people with IDs. A translational gap exists between the developed technology and users’ needs and capabilities. User involvement approaches have been developed to overcome this mismatch during the design, development, and implementation processes of the technology. The effectiveness and use of eHealth have received much scholarly attention, but little is known about user involvement approaches. ObjectiveIn this scoping review, we aimed to identify the inclusive approaches currently used for the design, development, and implementation of eHealth for people with IDs. We reviewed how and in what phases people with IDs and other stakeholders were included in these processes. We used 9 domains identified from the Centre for eHealth Research and Disease management road map and the Nonadoption, Abandonment, and challenges to the Scale-up, Spread, and Sustainability framework to gain insight into these processes. MethodsWe identified both scientific and gray literature through systematic searches in PubMed, Embase, PsycINFO, CINAHL, Cochrane, Web of Science, Google Scholar, and (websites of) relevant intermediate (health care) organizations. We included studies published since 1995 that showed the design, development, or implementation processes of eHealth for people with IDs. Data were analyzed along 9 domains: participatory development, iterative process, value specification, value proposition, technological development and design, organization, external context, implementation, and evaluation. ResultsThe search strategy resulted in 10,639 studies, of which 17 (0.16%) met the inclusion criteria. Various approaches were used to guide user involvement (eg, human or user-centered design and participatory development), most of which applied an iterative process mainly during technological development. The involvement of stakeholders other than end users was described in less detail. The literature focused on the application of eHealth at an individual level and did not consider the organizational context. Inclusive approaches in the design and development phases were well described; however, the implementation phase remained underexposed. ConclusionsThe participatory development, iterative process, and technological development and design domains showed inclusive approaches applied at the start of and during the development, whereas only a few approaches involved end users and iterative processes at the end of the process and during implementation. The literature focused primarily on the individual use of the technology, and the external, organizational, and financial contextual preconditions received less attention. However, members of this target group rely on their (social) environment for care and support. More attention is needed for these underrepresented domains, and key stakeholders should be included further on in the process to reduce the translational gap that exists between the developed technologies and user needs, capabilities, and context

Gaining actionable knowledge to improve local health-promoting capacities in long-term care support settings for people with intellectual disabilities

Objective: People with intellectual disabilities (ID) are largely dependent on their environment to live healthily and, in this, ID-support organizations play a vital role. An environmental asset mapping tool for ID-support settings has been developed. This study aims to provide insight into whether or not the tool can provide a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings. Methods: Fifty-seven users from four setting completed the tool on availability, user satisfaction, and dreams regarding social, physical, organizational, and financial assets. Results: The findings provide a comprehensive view of available assets. Together with user satisfaction and dreams for improvements, they provide actionable knowledge for improving the health-promoting capacities of the settings, including: (1) how use of available assets can be improved, (2) the type of assets that should be enriched, and (3) the assets that can be added to the system. Conclusion: The asset mapping tool provides a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings. Practice implications: ID-support organizations can use the tool to generate actionable bottom-up knowledge for priority setting and implementing interventions to improve their health-promoting capacities

Health problems of people with intellectual disabilities in Dutch out-of-hours primary care

Background: Little is known about the health needs of people with intellectual disabilities who access out-of-hours primary care services, raising concerns about accessibility and quality of care for this group. This study aims to identify commonly presented health problems of people with intellectual disabilities in this specific setting compared with the general population. Method: Cross-sectional study with routine data at two out-of-hours cooperatives with a total of 41,166 persons aged 20–65 requesting outof-hours primary care in 2014, of which 315 persons were identified as having an intellectual disability. Results: Having an intellectual disability was associated with a higher probability of presenting with epilepsy (OR 45.65) and concerns about, and adverse effects of, medical treatment (OR 23.37, and 8.41, respectively). Conclusions: Given the high rates of epilepsy and medication-related concerns of people with intellectual disabilities, this study suggests that these issues require special attention to improve the accessibility and quality of out-of-hours primary care.</p

Priority-setting and feasibility of health information exchange for primary care patients with intellectual disabilities : A modified Delphi study

Objective: Accurate health information exchange (HIE) is fragile in healthcare for patients with intellectual disabilities (ID), threatening the health outcomes for this patient group. In conjunction with a group of experts, we aimed to identify the principal actions and organisational factors facilitating HIE for primary care patients with ID and to assess their perceived feasibility in daily practice. Methods: We conducted a two-round modified Delphi study with Dutch GPs (n = 22), support workers (n = 18) and ID physicians (n = 20). In an extensive set of 61 items covering actions and organisational factors, experts ranked items in order of importance and rated their feasibility. Results: Agreement was reached on the importance of 22 actions and eight organisational factors, of which 82% were deemed (very) feasible in daily practice. Experts stressed the importance of listed actions and factors being implemented simultaneously and remarked that further priority should be based on contextual demands. Conclusion and practice implications: This study indicates the principal actions and organisational factors for HIE regarding primary care patients with ID. The set can be used as a practical guide to optimise inter-professional cooperation and arrange the distribution of HIE roles and responsibilities in relation to this patient group

Primary mental healthcare for adults with mild intellectual disabilities: a Dutch database study

General practitioners (GPs) are increasingly confronted with people with both mild intellectual disability (MID) and mental health (MH) problems. Little is known about the type of MH problems for which people with MID visit their GP and the care provided. To identify the type and prevalence of MH disorders and MH-related complaints in people with MID in primary care and care provided, compared to people without ID. By linking the Netherlands Institute for Health Services Research’s primary care databases, comprising electronic health records, with Statistic Netherlands’ social services and chronic care databases, we identified 11,887 people with MID. In this four-year retrospective study, MH-related International Classification of Primary Care (ICPC) codes and care characteristics were compared between people with MID and without ID. Of the people with MID, 48.8% had MH problems recorded vs. 30.4% of the people without ID, with significant differences in substance abuse, suicide attempts, and psychosis. Of the MID group, 80.3% were not registered by their GP with the ICPC code mental retardation. GPs provided more care to people with MID and MH problems than people without ID but with MH-problems regarding consultations (median 6.4 vs. 4.0 per year) and variety of prescribed medications (median 2.7 vs. 2.0 per year). In primary care, the prevalence of MH problems and care provided is high in people with MID. To improve primary mental healthcare for this group, it is essential to increase GPs’ awareness and knowledge on the combination of MID and MH.</p