Medical technologies, e-health and personalised medicine are rapidly changing the healthcare landscape. Successful implementation depends on interactions between the technology, the actors and the ...context. More traditional reductionistic approaches aim to understand isolated factors and linear cause–effect relations and have difficulties in addressing inter-relatedness and interaction. Complexity theory offers a myriad of approaches that focus specifically on behaviour and mechanisms that emerge from interactions between involved actors and the environment. These approaches work from the assumption that change does not take place in isolation and that interaction and inter-relatedness are central concepts to study. However, developments are proceeding fast and along different lines. This can easily lead to confusion about differences and usefulness in clinical and healthcare research and practice. Next to this, reductionistic and complexity approaches have their own merits and much is to be gained from using both approaches complementary. To this end, we propose three lines in complexity research related to health innovation and discuss ways in which complexity approaches and reductionistic approaches can act compatibly and thereby strengthen research designs for developing, implementing and evaluating health innovations.
People with intellectual disability have a poorer health status than the general population. In The Netherlands, support workers play a key role in meeting health support needs of people with ...intellectual disability. Research on how people with intellectual disability and their support workers experience the support worker's role in preventing, identifying, and following up health needs of people with intellectual disability is scarce. To enhance health support of people with intellectual disability it is crucial that we understand how health support is delivered in everyday practice. Therefore, this study investigated experiences of people with intellectual disability and support workers with the health support of people with intellectual disability.
Data collection consisted of six focus group (FG) discussions with between four and six participants (N = 27). The FGs consisted of three groups with support workers (n = 15), two groups with participants with mild to moderate intellectual disability (n = 8), and one group with family members as proxy informants who represented their relative with severe to profound intellectual disability (n = 4). The data was analysed thematically on aspects relating to health support.
We identified three main themes relevant to the health support of people with intellectual disability: 1) dependence on health support, 2) communication practices in health support, and 3) organizational context of health support. Dependence on health support adresses the way in which support workers meet a need that people with intellectual disability cannot meet themselves, and communication practices and organizational context are identified as systems in which health support takes place.
This study investigated experiences with the health support of people with intellectual disability from the perspectives of people with intellectual disability and support workers. We discuss the dependence of people with intellectual disability and the complexity of health support in everyday practice. We provide practical implications that can strengthen support workers in the provision of health support for people with intellectual disability in everyday practice. The findings of this study emphasize the need for intellectual disability care-provider organizations to establish policies around consistency in support staff to make it easier to identify and follow up health needs, and an environment where support staff can develop their expertise concerning communication practices, lifestyle choices, and identifying and following up health needs.
Celotno besedilo
Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
The COVID-19 pandemic has disproportionately affected persons in long-term care, who often experience health disparities. To delineate the COVID-19 disease burden among persons with intellectual ...disabilities, we prospectively collected data from 36 care facilities for 3 pandemic waves during March 2020-May 2021. We included outcomes for 2,586 clients with PCR-confirmed SARS-CoV-2 infection, among whom 161 had severe illness and 99 died. During the first 2 pandemic waves, infection among persons with intellectual disabilities reflected patterns observed in the general population, but case-fatality rates for persons with intellectual disabilities were 3.5 times higher and were elevated among those >40 years of age. Severe outcomes were associated with older age, having Down syndrome, and having >1 concurrent condition. Our study highlights the disproportionate COVID-19 disease burden among persons with intellectual disabilities and the need for disability-inclusive research and policymaking to inform disease surveillance and public health policies for this population.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, ODKLJ, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
The 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.
In 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.
We 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.
The 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.
The 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.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Background
People with intellectual disabilities (ID) face barriers in cancer care contributing to poorer oncological outcomes. Yet, understanding cancer risks in the ID population remains ...incomplete.
Aim
To provide an overview of cancer incidence and cancer risk assessments in the entire ID population as well as within ID‐related disorders.
Methods
This systematic review examined cancer risk in the entire ID population and ID‐related disorders. We systematically searched PubMed (MEDLINE) and EMBASE for literature from January 1, 2000 to July 15, 2022 using a search strategy combining terms related to cancer, incidence, and ID.
Results
We found 55 articles assessing cancer risks in the ID population at large groups or in subgroups with ID‐related syndromes, indicating that overall cancer risk in the ID population is lower or comparable with that of the general population, while specific disorders (e.g., Down's syndrome) and certain genetic mutations may elevate the risk for particular cancers.
Discussion
The heterogeneity within the ID population challenges precise cancer risk assessment at the population level. Nonetheless, within certain subgroups, such as individuals with specific ID‐related disorders or certain genetic mutations, a more distinct pattern of varying cancer risks compared to the general population becomes apparent.
Conclusion
More awareness, and personalized approach in cancer screening within the ID population is necessary.
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.
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.
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.
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.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Medical care for people with intellectual and developmental disabilities (IDD) is organized differently across the globe and interpretation of the concept of medical care for people with IDD may vary ...across countries. Existing models of medical care are not tailored to the specific medical care needs of people with IDD. This study aims to provide an improved understanding of which aspects constitute medical care for people with IDD by exploring how international researchers and practitioners describe this care, using concept mapping. Twenty-five experts (researchers and practitioners) on medical care for people with IDD from 17 countries submitted statements on medical care in their country in a brainstorming session, using an online concept mapping tool. Next, they sorted all collected statements and rated them on importance. The themes, clusters and statements identified through this explorative study provide additional content and context for the specific patient group of people with IDD to the dimensions of previous models of medical care.
Background
Concerns have been raised about the accessibility and quality of cancer‐related care for people with intellectual disabilities (ID). However, there is limited insight into cancer incidence ...and the utilization of cancer care at the ID population level to inform targeted cancer control strategies. Therefore, we aimed to examine differences in the utilization of cancer‐related care between people with and without ID, identified through diagnostic codes on health insurance claims.
Methods
In a population‐based cohort study, Dutch individuals of all ages who received residential care through the Chronic Care Act due to an ID (n = 65 183) and an age and sex‐matched sample of persons without ID (1:2 ratio), who were cancer‐free at enrollment in 2013 were followed through 2015. Incidence rates (IRs) of newly started cancer care and IR ratios (IRRs) with 95% CIs were used to compare groups. Separate analyses were performed per cancer type.
Results
Individuals with ID received less cancer‐related care than individuals without (IRR = 0.64, 95% CI 0.62‐0.66). Differences increased with age and were larger for females than for males. Utilization of care for cancers within the national screening program (female breast, cervical, and colon cancer) was lower for people with ID compared to people without ID.
Conclusion
Cancer may be underdiagnosed and/or undertreated in people with ID, or cancer is truly less prevalent in this population. In particular, the differences detected between males and females with ID, and the potential underutilization of national screening programs, require urgent follow‐up investigations.
Individuals with an intellectual disability (ID) were given less cancer‐related health care than people without ID. This could indicate cancer is under‐diagnosed and/or under‐treated in people with ID.
With the ongoing demographic shift, the quality of life and health promotion among older individuals are becoming increasingly important. Recent research suggests that Sense of Coherence positively ...affects quality of life. Hence, a valid and reliable measurement of Sense of Coherence is pivotal. The 13-item Orientation to Life Questionnaire (OLQ-13) can be used to measure Sense of Coherence. The purpose of the present study is to assess the psychometric properties, validity, and reliability, of the OLQ-13 in community-dwelling individuals, aged 65 and older.
The OLQ-13 scale was administered as part of a healthy aging project for non-institutionalized people aged 65 years and older. Internal consistency and reliability were assessed by means of inter-item and test-halves correlations and Cronbach's alpha. Construct validity was explored using cluster analysis and exploratory factor analysis (n = 703) and tested using confirmatory factor analysis on a separate subset of individuals (n = 658). Item face validity was investigated by means of 12 semi-structured interviews.
The reliability and the validity of the OLQ-13 in this population of non-institutionalized individuals aged 65 years and older was ambiguous, at least partly due to the poor performance of two items (b and d), which was confirmed by results from the qualitative part of this study. The psychometric properties of the proposed OLQ-11, obtained by deleting the two items, were better. In particular, the interpretation of exploratory factor solution improved. Whereas the underlying theoretical constructs could not be linked to the exploratory analyses of OLQ-13, this was to some extent possible in OLQ-11. The superior validity of OLQ-11 over OLQ-13 was supported by the better model fit in the confirmatory factor analysis.
The present mixed-method study suggests the proposed OLQ-11 as a more suitable instrument for measuring Sense of Coherence than the OLQ-13 in a population of ageing individuals. This study confirms that the validity and reliability of OLQ-13 may differ substantially in different populations.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Individuals with intellectual disabilities (ID) depend on public services for daily support and medical care; however, this group of individuals can be difficult to identify within population data. ...This therefore limits the opportunities to accurately estimate the size of the population with ID, monitor trends and tailor public health interventions according to the needs and characteristics of this group. By linking relevant databases, this study sought to identify individuals with ID in national data, to estimate the prevalence of ID based on public service use and to explore how this method can be used to better monitor the population with ID.
Explorative data linkage study using the Dutch population register and databases from public services accessible with an ID diagnosis.
The overall prevalence of ID in the Dutch adult population was estimated, specified by age group and sex, and the identified ID groups were also characterised by their support needs. Participants included the entire adult Dutch population who were alive on 1 January 2015.
After linking databases, 187,149 adults with ID were identified within a population of almost 12.7 million Dutch adults, giving an ID prevalence estimate of 1.45%. Prevalence of ID was higher among males (1.7%) than females (1.2%). Most individuals with ID were identified through the use of residential care services (n = 91,064; 0.7%). Non-residential ID-related care was used by 27,007 individuals (0.2%). Social, employment or income support due to a (mild) ID was received by 69,078 individuals (0.5%); the mean age in these ID groups was between 8 and 10 years which is younger than that in the general Dutch population. ID prevalence declined with increasing age across all ID subgroups.
The ID prevalence in The Netherlands, as determined by ID-related public service usage, aligns with international estimates. This suggests that national supportive services are accessible and used by individuals with ID. Moreover, this demonstrated that databases from national supportive services can be a useful resource to identify individuals with ID at the population level and can enable structural monitoring of the ID population through linking national databases.
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