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Primary care health checks, screenings and GP consultations are often the gateway for people with intellectual disabilities to access their physical and mental healthcare. For a population who experience greater levels of health difficulties alongside significant health inequality, improving care quality and access is of major importance. This meta-ethnographic, qualitative review aims to explore people with intellectual disabilities experiences of health checks, screenings and GP visits, while assessing the quality of the current literature and synthesising findings to consider clinical and research recommendations based on third order constructs. A systematic search identified 20 studies that met inclusion criteria. Quality assessment of each paper was conducted. Meta-ethnography methods were used to analyse and synthesis findings. One overarching concept was identified: Include Me, along with seven core concepts; Empowerment and Disempowerment, Communication and Interpersonal Factors, Access and Adaptations and Biased Narratives and Shifting Perspectives. Implications for practice and future direction are discussed.

Background: Although the current preventive measures relating to COVID-19 can lead to challenges in the daily work of direct support workers (e.g. keeping 1.5 m distance), it remains vital to uphold the principles of person-centred care when working with older people with intellectual disabilities. The current study explores the extent to which direct support workers have been able to apply a specific form of person-centred care (i.e. integrated emotion-oriented care, or IEOC) when working with older people with intellectual disabilities during the COVID-19 pandemic. Method: Six direct support workers from five facilities serving older people with intellectual disabilities in the Netherlands participated in this qualitative study. They participated in a two-hour focus group, which was transcribed verbatim, and the transcript was analysed thematically. Results: Three themes emerged: (i) the negative impact of changes due to the COVID-19 measures on service users; (ii) the adaptation of direct support workers to changes due to the COVID-19 measures; and (iii) putting the needs and wishes of service users first. Conclusion: This study provides first impressions into the experiences of direct support workers providing person-centred care to older people with intellectual disabilities during the COVID-19 pandemic.

Background: Acceptance of health care professionals is of paramount importance for the uptake and implementation of eHealth. The Unified Theory of Acceptance and Use of Technology (UTAUT) model is a widely used framework for studying health care professionals' acceptance and actual use of eHealth among general client populations. However, there is limited understanding of the eHealth acceptance of health care professionals working with people with intellectual disabilities (ID)., Objective: This study aimed to explore the applicability of the UTAUT model toward understanding the acceptance, intention to use, and actual use of eHealth among support staff and therapists working with people with ID., Methods: A total of 2 cross-sectional survey studies were conducted among health care professionals from 5 health care organizations for people with ID in the Netherlands in 2018 (n=311) and in 2021 during the COVID-19 pandemic (n=326). In addition to confirmatory and exploratory factor analyses to evaluate both the original UTAUT model and an extended version, descriptive analysis was used to explore participants' characteristics, acceptance levels, and eHealth usage. Moderator analysis and multiple regression analysis were also used., Results: A confirmatory factor analysis indicated a poor fit for both the original 4-factor UTAUT model and the extended version. An exploratory factor analysis was then conducted, resulting in a more satisfactory 5-factor model after removing 1 item with a factor loading <.40. Internal consistency of the 5 factors ranged from acceptable to good (Cronbach α=.76-.85). Collectively, all factors predicted the intention to use eHealth in 2018 (R 2 =0.47; F 5,305 =54.885; P<.001) and in 2021 (R 2 =0.43; F 5,320 =49.32; P<.001). Participants scored moderately on all 5 acceptance factors in both 2018 and 2021. Moderator analysis indicated that age and voluntariness influence the relationship between factors that determined acceptance and intention to use eHealth., Conclusions: The findings from 2 cross-sectional studies conducted in 2018 and 2021, using an extended UTAUT model, gave a deeper understanding of eHealth acceptance among health care professionals who work with people with ID., (©Cathelijn Oudshoorn, Noud Frielink, Heleen Riper, Petri Embregts. Originally published in JMIR Formative Research (https://formative.jmir.org), 12.11.2024.)

Background: User involvement and participation in the supervision of the quality of care is an important topic for many healthcare inspectorates. It offers regulators an additional view on quality, increases the legitimacy and accountability of the inspectorate, empowers users and enhancing the public's trust in the inspectorate. To assess the accessibility of the local governmental social domain services the Joint Inspectorate Social Domain in the Netherlands worked together with people with intellectual disabilities performing as 'mystery guests' in an innovative project. This paper describes the findings of the evaluation of this project. Methods: People with intellectual disabilities living at home on their own may need some help with daily activities such as administrative tasks, raising children, household tasks, managing debts or finding work. In the Netherlands they have to arrange this help at their municipality. The goal of this project was to find out how easily people with intellectual disabilities could get help from their municipality. The participants were equal partners with the JISD inspectors from the beginning: in constructing an inspection framework, in acting as mystery guest with a fictive support request, reported back the results by storytelling. Results: The evaluation of the project showed that the JISD succeeded in their key aspect of the project: the goal to involve people with intellectual disabilities in a leading role from the beginning until the end. Their perspectives and preferences were the starting point of supervision. Pain points in accessibility became clear straight away and gave important insights for both inspectors as municipality professionals. Municipalities started to improve their services and evaluated the improvements with the clients. Furthermore, the impact on the participants themselves was also huge: they felt being taken seriously, valued and empowered. Conclusion: Involving people with intellectual disabilities as participants in all phases of supervision processes contributes to more relevant and useful outcomes, creates mutual understanding of perspectives, as affirmed by both municipalities and inspectors, and creates empowerment of the participants. Furthermore, it fits perfectly within the United Nation Convention on the rights of persons with disabilities and the current development of 'value driven regulation'. [ABSTRACT FROM AUTHOR]

Introduction: Experience‐based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long‐term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations. Methods: Through a participatory research approach, EBCD was adjusted to long‐term care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. Results: The participatory research resulted in the development of 'Ask us!'—a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long‐term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo‐voice and involving experts‐by‐experiences as co‐ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo‐elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts‐by‐experience as proxies to share experiences of clients for whom participation in the 'Ask us' method remains inaccessible. Conclusion: The result of a robust participatory process, 'Ask us!' is a promising method for participatory quality improvement in long‐term care. The research furthermore generated lessons for involving vulnerable populations in participatory research and codesign. Patient or Public Contribution: Clients were involved as informants, sharing their experiences with the care relationship in interviews, photovoice and observations. They were also involved as consultants, helping to analyse input for the film scripts during data validation sessions. [ABSTRACT FROM AUTHOR]

Background: 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. Method: 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. Results: 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. Conclusion: 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. [ABSTRACT FROM AUTHOR]

Objectives: To explore characteristics of sexual abuse within residential settings for people with an intellectual disability and to map out measures undertaken and improvement plans made by healthcare organisations after sexual abuse., Design: Descriptive analysis of reports about sexual violence against persons with an intellectual disability submitted to the Dutch Health and Youth Care Inspectorate by healthcare organisations., Setting: Residential settings for people with an intellectual disability in The Netherlands., Selection: 186 incident reports submitted to the Inspectorate between January 2017 and December 2019 were included., Results: 125 incident reports concerned sexual abuse by fellow clients and 61 reports concerned sexual abuse by professionals. Client perpetrators were predominantly male whereas almost 30% of the abusing professionals were female. The majority of the perpetrating professionals were unlicensed professionals. Clients who committed sexual abuse were mostly relocated to another residential setting. Most healthcare organisations invested in education and training for employees instead of improving the sexual education programme for clients after an incident of sexual abuse. If there was a strong suspicion of sexual abuse by a professional, resignation followed in most cases. In just two cases, the perpetrating professional was reported to a warning registry., Conclusions: A small amount of the perpetrating professionals held a licensed profession, which makes it challenging to address this form of sexual abuse through healthcare regulation. It raises the question why warning registries are not engaged more often after alleged sexual abuse. Constantly relocating abusing clients might endanger the (sexual) safety of clients in these new environments. Previous literature suggests that adequate sexual education regarding social skills and sexual behaviour is very effective for the majority of clients who commit sexual abuse. Healthcare organisations could take up a more prominent role in this to ensure safety for their own clients and for clients residing elsewhere., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Hospitals and long-term care facilities, which are key institutions to serve health and well-being, have an important exemplary role in providing supportive food environments to encourage healthy and sustainable food choices. The objective of this study is to characterize the physical, socio-cultural, political and economic dimensions of the food environment for health care receivers, health workforce and visitors in healthcare settings, and make comparisons between the food environment of hospitals and long-term care facilities. Methods: To characterize the food environment in healthcare settings, two sub-studies were conducted. In sub-study 1, semi-structured interviews were held with staff members (n = 46) representing 11 hospitals and 26 long-term care facilities (rehabilitation centres, nursing homes, institutions for people with intellectual disabilities and mental healthcare institutions). In sub-study 2, staff members audited the food environment in hospitals (n = 28) and long-term care facilities (n = 36) using a predefined checklist. Results: The food environment in Dutch healthcare settings varies substantially between locations although noticeable differences between hospitals and long-term care facilities were identified. Hospitals and larger long-term care facilities featured more often restaurants and utilized central spaces for preparation of meals, while smaller long-term care facilities often operated as household-like settings. Type of healthcare shaped the socio-cultural food environment, with hospitals primarily emphasizing nutrition for fast recovery, while long-term care facilities more often as an instrument (i.e., to structure the day). Participants highlighted the importance of food policies and broad organizational support for realizing and regulating improvement of the food environment. Yet, long-term care facilities were less familiar with national guidelines for food environments compared to hospitals. Several economical aspects, like profit motives, strict budgets and contracts with external parties affected and shaped the food available within all healthcare settings. Conclusions: This study characterized the food environment in Dutch healthcare settings. Disclosed differences between hospitals and long-term care facilities should be incorporated in strategies for a transition of the food environment. Future research should investigate the underlying mechanisms of the healthcare food environment attaining all healthcare stakeholders - health care receivers, staff and visitors - while prioritizing sustainability alongside healthiness. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (IDs) experience health inequalities. Applying health assessments is one way of diminishing these inequalities. A health assessment instrument can support general practitioners (GPs) in providing better medical care to people with ID.Objectives: The aim of this study was to determine which items should be part of a health assessment instrument for people with ID to be used in primary care.Methods: This Delphi consensus study was conducted among 24 GP experts and 21 ID physicians. We performed three anonymous sequential online questionnaire rounds. We started with 82 'general' items and 14 items concerning physical and additional examinations derived from the international literature and a focus group study among Dutch GPs. We definitely included items if more than 75% of the GP experts agreed on their inclusion.Results: The participation rate in all rounds was above 88%. The expert groups proposed 10 new items. Consensus was reached on 64 'general' items related to highly prevalent diseases, public health and health promotion. Consensus was also reached on 18 physical and additional examination items.Conclusions: For the first time, experts in a Delphi study were able to arrive at a selection of items for a health assessment instrument for people with ID. The overall agreement among the GPs and ID physicians was good. Because the experts prefer that patients complete the health assessment questionnaire at home, questions that cover these items must be formulated clearly. [ABSTRACT FROM AUTHOR]

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., (© 2020 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Background: Validated instruments are needed to assess the delivery of patient-centred care (PCC) to people with intellectual disabilities (PWIDs) needing 24-h care in residential settings. Eight dimensions of PCC have been identified: taking patients' preferences into account; access to care; emotional support; physical comfort; information and education; involvement of family and friends; coordination of care; and continuity and secure transition. Objective of this study is to validate an instrument to assess these eight PCC dimensions among informal caregivers of PWIDs in residential settings (institutional settings as well as group homes in the community). The original 24-item instrument was developed and validated among professionals providing care to PWIDs., Methods: This study was conducted in a disability care centre in the Netherlands. All informal caregivers of PWIDs living in institutional settings or group homes in the community in need of 24-h care were invited to participate (n = 941). The response rate was 31% (n = 289). We tested the instrument using structural equation modelling, and examined its validity and reliability., Results: Confirmatory factor analyses revealed good indices of fit and overall internal consistency, as represented by Cronbach's alpha values. All eight dimensions of PCC were related positively to satisfaction with care (all p ≤ 0.001). As expected, informal caregivers were less critical of PCC and its underlying dimensions, except for information and education, than were professionals working in the same disability care centre., Conclusions: The psychometric properties of the 24-item PCC instrument for informal caregivers (PCC-IC) were satisfactory, indicating that the PCC-IC is valid and reliable for the assessment of the eight dimensions of PCC among informal caregivers of PWIDs in residential settings.

Purpose: Little is known about the associations between mild intellectual disability (MID), borderline intellectual functioning (BIF) and aggressive behaviour in general mental health care. The study aims to establish the association between aggressive behaviour and MID/BIF, analysing patient characteristics and diagnoses. Method: 1174 out of 1565 consecutive in-and outpatients were screened for MID/BIF with the Screener for Intelligence and Learning Disabilities (SCIL) in general mental health care in The Netherlands. During treatment, aggressive behaviour was assessed with the Staff Observation Aggression Scale-Revised (SOAS-R). We calculated odds ratios and performed a logistic and poisson regression to calculate the associations of MID/ BIF, patient characteristics and diagnoses with the probability of aggression. Results: Forty-one percent of participating patients were screened positive for MID/BIF. Patients with assumed MID/BIF showed significantly more aggression at the patient and sample level (odds ratio (OR) of 2.50 for aggression and 2.52 for engaging in outwardly directed physical aggression). The proportion of patients engaging in 2–5 repeated aggression incidents was higher in assumed MID (OR = 3.01, 95% CI 1.82–4.95) and MID/BIF (OR = 4.20, 95% CI 2.45–7.22). Logistic regression showed that patients who screened positive for BIF (OR 2,0 95% CL 1.26–3.17), MID (OR 2.89, 95% CI 1.87–4.46), had a bipolar disorder (OR 3.07, 95% CI 1.79–5.28), schizophrenia (OR 2.75, 95% CI 1.80–4.19), and younger age (OR 1.69, 95% CI 1.15–2.50), were more likely to have engaged in any aggression. Poisson regression underlined these findings, showing a SCIL of 15 and below (β = 0.61, p<0.001) was related to more incidents. Conclusions: We found an increased risk for aggression and physical aggression in patients with assumed MID/BIF. We recommend screening for intellectual functioning at the start of treatment and using measures to prevent and manage aggressive behaviour that fits patients with MID/BIF. [ABSTRACT FROM AUTHOR]

Background: Patient/Person Centred Care (PCC) has achieved widespread attention which resulted in the identification of eight dimensions of PCC: Respect for the patients' values, preferences and expressed needs; information and education; access to care; emotional support to relieve fear and anxiety; involvement of family and friends; continuity and secure transition between healthcare settings; physical comfort; coordination of care. An instrument to assess patient centeredness of care delivery according to these eight dimensions among professionals is however lacking. The main objective of this study is therefore to develop and validate an instrument to assess the eight PCC dimensions among professionals providing care to institutionalized People With Intellectual Disabilities (PWIDs).Methods: This cross-sectional survey study was conducted in a disability care centre in the region Twente in the Netherlands, the Twentse Zorgcentra. All professionals delivering care to institutionalized PWIDs (n = 1146) were invited to participate. An instrument was developed to assess the eight dimensions of PCC, which was tested among 464 professionals (response rate = 40%). We tested the instrument by means of structural equation modelling, and examined its validity and reliability.Results: Indices of the 35-item PCC version are satisfactory but showed that the model left room for improvement and shortening of the instrument (RMSEA >0.06 and CFI < 0.95). Confirmatory factor analyses revealed good indices of fit with the 24-item PCC-instrument among professionals. Internal consistency of the overall instrument was also good.Conclusions: The psychometric properties of the 24-item PCC-instrument were satisfactory, rendering it a valid and reliable instrument for assessing the eight dimensions of PCC among professionals providing care to institutionalized PWIDs. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (IDs) experience health inequalities. Applying health assessments is one way of diminishing these inequalities. A health assessment instrument can support general practitioners (GPs) in providing better medical care to people with ID., Objectives: The aim of this study was to determine which items should be part of a health assessment instrument for people with ID to be used in primary care., Methods: This Delphi consensus study was conducted among 24 GP experts and 21 ID physicians. We performed three anonymous sequential online questionnaire rounds. We started with 82 'general' items and 14 items concerning physical and additional examinations derived from the international literature and a focus group study among Dutch GPs. We definitely included items if more than 75% of the GP experts agreed on their inclusion., Results: The participation rate in all rounds was above 88%. The expert groups proposed 10 new items. Consensus was reached on 64 'general' items related to highly prevalent diseases, public health and health promotion. Consensus was also reached on 18 physical and additional examination items., Conclusions: For the first time, experts in a Delphi study were able to arrive at a selection of items for a health assessment instrument for people with ID. The overall agreement among the GPs and ID physicians was good. Because the experts prefer that patients complete the health assessment questionnaire at home, questions that cover these items must be formulated clearly.

Background: GPs provide health care to people with intellectual disabilities (ID). People with ID find it difficult to express themselves concerning health-related matters. Applying health assessments is an effective method to reveal health needs, and can play a role in prevention and health promotion.Aim: The aim of this qualitative study was to explore GPs' considerations about applying a health assessment for people with ID.Design and Setting: This focus group study was conducted among a selection of Dutch GPs.Method: An interview guide was developed. All discussions were audiorecorded and transcribed. Analysis was performed using the framework analysis approach. Two researchers independently applied open coding and identified a thematic framework. This framework and the summaries of views per theme were discussed in the research team.Results: After four focus groups, with 23 GPs, saturation was reached. Three main themes evolved: health assessments in relation to GPs' responsibility; the usefulness and necessity of health assessments; and barriers to using health assessments on people with ID. A health assessment instrument for people with ID can help GPs to focus on certain issues that are not so common in the general population. GPs are motivated to use such a tool if it is scientifically tested, and results in significant health gains. However, GPs identify barriers at the level of GP, patient, and organisation.Conclusion: Most GPs in the focus groups consider providing medical care to people with ID their responsibility and indicate that a health assessment instrument could be a valuable tool. In order to deliver good care, they need education and support. Many barriers need to be overcome before a health assessment instrument can be implemented. [ABSTRACT FROM AUTHOR]

Background: Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID. This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts. Methods: A qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis. Results: Five shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between ‘two families': relatives and care staff. Six relational values were behind these shifts: ‘being there’ for the person with ID, ‘being responsive’ to the person's needs, ‘reflection' on their own emotions and caring relationships, ‘attentiveness' to the ID person's wishes and expressions of distress, ‘responsibility' for taking joint decisions in the best interests of the person, and ‘openness to cooperation and sharing' the care with others. Conclusions: End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals. [ABSTRACT FROM AUTHOR]

Introduction: People with intellectual disabilities (ID) are earlier frail than people in the general population. Although this may be explained by lifelong unfavourable social, psychological and clinical causes, underlying physiological pathways might be considered too. Biological measures can help identify pathophysiological pathways. Therefore, we examined the association between frailty and a range of serum markers on inflammation, anaemia, the metabolic system, micronutrients and renal functioning. Methods: Participants (n = 757) with borderline to severe ID (50+) were recruited from three Dutch ID care and support services. Results: Frailty was measured with a frailty index, a measure based on the accumulation of deficits. Linear regression analyses were performed to identify associations between frailty and biochemical measures independent of age, gender, level of ID and the presence of Down syndrome. Frailty appears associated with inflammation (IL-6 and CRP), anaemia, metabolic markers (glucose, cholesterol and albumin) and renal functioning (cystatin-C and creatinine). Discussion: These results are in line with results observed in the general population. Future research needs to investigate the causal relation between biochemical measures and frailty, with a special focus on inflammation and nutrition. Furthermore, the possibility to screen for frailty using biochemical measures needs to be used. [ABSTRACT FROM AUTHOR]

This study aims to examine chronic chronic disease prevalence in people with ID compared to those without ID in primary care settings and comorbidity patterns accompanying chronic diseases, by focusing on age and sex differences. With a focus on the four highest-impact chronic diseases worldwide and individually, ischemic heart disease, cerebrovascular disease, diabetes mellitus, and chronic obstructive pulmonary disease (COPD), it is assessed to what extent these diseases affect people with ID. Two databases are linked, that of Nivel Primary Care Database, a large representative sample of Dutch citizens registered in general practices, and non-public microdata from Statistics Netherlands, containing information on indication of long-term care or supportive services for people with ID. With prevalence rates and odds ratios chronic disease prevalence and comorbidity patterns were established by total groups of people with and without ID and by sex and age groups. Results displayed differences in chronic disease prevalence in people with and without ID: cardiovascular diseases were less prevalent, and diabetes mellitus more prevalent in people with ID. At relatively young age (<50 years), people with ID not only had more chronic diseases, but also more often had multiple comorbidities compared to those without ID. The most common comorbidity in all chronic diseases was hypertension, while diabetes mellitus as comorbidity also occurred often. This study is the first to present chronic disease prevalence and comorbidity patterns across the groups of people with and without ID and by sex and age groups. It can therefore be used as source of accurate information on the health prevalence and patterns of people with ID compared to the general populations, and provides a novel insight into differences in the group of people with ID. [ABSTRACT FROM AUTHOR]

Background: The fulfilment of basic psychological needs (BPNs) is seen as an integral part of human self-determination, subjective wellbeing, and overall quality of life. However, the meaning of these psychological constructs for individuals with the most extensive support needs remains elusive. Methods: Primary relatives of nine people diagnosed with severe or profound intellectual and multiple disabilities were interviewed about their perceptions of autonomy, competence, and relatedness regarding their family member with complex care needs, and about the ways in which they tried to support their family member in fulfilling specific BPNs. The interview analysis followed a grounded theory with the sensitizing concepts approach. Results: The relatives assigned important meaning to the BPNs, providing insights into their subtle nature, their implicit drivers, and how they were experienced. The relatives also identified serious challenges in detecting, clarifying, and creating opportunities for BPNs. Conclusions: The themes in the relatives' perspectives can be summarized into a conceptual framework that may contribute to better mutual understanding between people with complex care needs, their relatives, and healthcare providers. [ABSTRACT FROM AUTHOR]

Background: In the Netherlands, many people with an intellectual disability and challenging behavior are still prescribed antipsychotic medication, often for many years and in high doses. According to the new draft law on care and coercion, prescribing antipsychotics, without a valid indication, for people with an intellectual disability, will be regarded as coercion. The effect for clinical practice will be that such antipsychotic medication will have to be re-assessed and, in many cases, reduced and stopped., Aim: To comment on the effectiveness, the side effects and futility of prescribing antipsychotics to people with an intellectual disability and challenging behavior in order to arrive at recommendations about the evaluation of antipsychotics and, if possible, about the reduction of antipsychotics for intellectually challenged people who do not really require such medication., Method: Practical recommendations are made based on recent literature and clinical experience., Results: Thorough evaluation and - when possible - the reduction of antipsychotics for people with an intellectual disability requires psychiatrists to invest time and energy in diagnosis and stability of patients, to invest in the patient's environment and to opt for a controlled reduction of antipsychotics., Conclusion: The new draft law on care and coercion highlights the urgent need for guidelines concerning the reduction of antipsychotics for people with an intellectual disability when there is no clear indication that such a step will benefit the patient.

This study aims to present a nationwide registration of COVID-19 in people with ID living in residential settings, in order to provide insight in COVID-19 epidemiology in this vulnerable group. In a health crisis as the current worldwide COVID-19 pandemic, it is crucial to gain knowledge about the new infectious disease and its effects on health. Identifying risk groups is important for adequate preventative measures and policy-making. People with ID generally have poorer health than others in the general population, with higher prevalence of co-morbidities, risk factors such as obesity, and higher excess mortality rates for infectious diseases. However, there is little reliable knowledge about specific risks and consequences of COVID-19 in the ID population as compared with the general population. To increase this knowledge a nationwide registration system for data on people with ID was set up in Dutch long term care facilities. The registration covered more than 6500 patients with (suspected) Covid-19 infection observed in 2020 and registration is still ongoing. Organizations registered data of their patients with either suspected or confirmed COVID-19 infection, regarding socio-demographics, medical history and COVID-19 infection characteristics. People with ID are vulnerable to COVID-19 at a younger age compared to people in the general population. Case fatality rate was 3-4 times higher among people with ID compared to the general population, and mortality was already higher in younger age groups (40 years and older). Their living circumstances matter: in group home living circumstances more infected people with ID were observed. The etiology of the ID, especially Down syndrome, is an unfavorable predictor. According to these findings, people with ID proved to be vulnerable for COVID-19. Policy makers and care providers should adequately account for this increased vulnerability of the ID population. [ABSTRACT FROM AUTHOR]

The article discusses five basic criteria for adequate health care of people with intellectual disabilities, prepared by an organising committee which included the Dutch Ministry of Health, the Federation of Parent Associations, and the Dutch Organisation of Service Providers . The criteria included provisions for access to health services, requirements for health professionals, and the application of multidisciplinary and pro-active approaches. An overview of health issues affecting individuals with intellectual disabilities is also presented.

This study aimed to analyse the health problems and prescriptions of people with intellectual disabilities registered with GPs. Within the Second Dutch National Survey of General Practice evidence was gathered on the differences in health problems between people with intellectual disabilities and control persons (without intellectual disabilities). In a 1:5 matched sample, people with intellectual disabilities paid 1.7 times more visits to GPs. They presented a different morbidity pattern, and received four times as many repeat prescriptions. People with intellectual disabilities increase a GP's workload.

Large discrepancies have sometimes been found between the quality of life (QOL) experienced by clients with intellectual disabilities and their QOL as described by their caregivers. Olsen and Schober (Soc Indi Res 1993; 28: 173-193) may have provided a framework useful to conceptualize such discrepancies. They suggested that lack of concordance between objective circumstances (i.e. poverty) and perceived QOL must not be treated as measurement noise, but as a source of information. They speculated on the psychological processes that underly and explain this lack of concordance; particularly processes that try to deal with the stress induced by cognitive dissonance and learned helplessness. In this study low to moderate agreement was found between caregivers judgement of QOL of individual clients and clients' own perception of QOL. In some areas and for some clients the discrepancies indicated dissonance (caregivers are satisfied, clients are not) and in other areas and for other clients adaptation (clients are satisfied, caregivers are not). There were systematic differences between clients falling in these groups with respect to their personal characteristics and with respect to factual conditions of care. These outcomes are interpreted with respect to Olson and Schober's contentions regarding the psychological processes that underly a person's experience of QOL. The Olson and Schober framework appears to be a fruitful way to combine different sources of information regarding QOL.

Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They 'sensed' QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers. [ABSTRACT FROM AUTHOR]

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Objective: In the Netherlands, patients with borderline intellectual functioning are eligible for specialized mental health care. This offers the unique possibility to examine the mix of psychiatric disorders in patients who, in other countries, are treated in regular outpatient mental health care clinics. Our study sought to examine the rates of all main Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision, Axis I psychiatric diagnoses in outpatients with borderline intellectual functioning of 2 specialized regional psychiatric outpatient departments and to compare these with rates of the same disorders In outpatients from regular mental health care (RMHC) and outpatients with mild intellectual disabilities (IDs). Method: Our study was a cross-sectional, anonymized medical chart review. Ail participants were patients from the Dutch regional mental health care provider Rivierduinen. Diagnoses of patients with borderline intellectual functioning (borderline intellectual functioning group; n = 235) were compared with diagnoses of patients from RMHC (RMHC group; n = 1026) and patients with mild ID (mild ID group; n = 152). Results: Compared with the RMHC group, psychotic and major depressive disorders were less common in the borderline intellectual functioning group, while posttraumatic stress disorder and V codes were more common. Compared with the mild ID group, psychotic disorders were significantly less common. Conclusion: Mental health problems In people with borderline intellectual functioning may not be well addressed in general psychiatry, or by standard psychiatry for patients with ID. Specific attention to this group in clinical practice and research may be warranted lest they fall between 2 stools. [ABSTRACT FROM AUTHOR]

Background: Antimicrobial resistance (AMR) has become one of the major public health threats worldwide, emphasizing the necessity of preventing the development and transmission of drug resistant microorganisms. This is particularly important for people with vulnerable health conditions, such as people with intellectual disabilities (ID) and long-term care residents. This study aimed to assess the current status of AMR, antimicrobial stewardship (AMS) and infection prevention and control (IPC) in Dutch long-term care facilities for people with intellectual disabilities (ID-LTCFs). Methods: A web-based cross-sectional survey distributed between July and November 2023, targeting (both nonmedically and medically trained) healthcare professionals working in ID-LTCFs in The Netherlands, to study knowledge, attitudes and perceptions regarding AMR, AMS and IPC. Results: In total, 109 participants working in 37 long-term care organizations for people with intellectual disabilities throughout the Netherlands completed the questionnaire. The knowledge levels of AMR and IPC among nonmedically trained professionals (e.g., social care professionals) were lower than those among medically trained professionals (p = 0.026). In particular regarding the perceived protective value of glove use, insufficient knowledge levels were found. Furthermore, there was a lack of easy-read resources and useful information regarding IPC and AMR, for both healthcare professionals as well as people with disabilities. The majority of the participants (> 90%) reported that AMR and IPC need more attention within the disability care sector, but paradoxically, only 38.5% mentioned that they would like to receive additional information and training about IPC, and 72.5% would like to receive additional information and training about AMR. Conclusion: Although the importance of AMR and IPC is acknowledged by professionals working in ID-LTCFs, there is room for improvement in regards to appropriate glove use and setting-specific IPC and hygiene policies. As nonmedically trained professionals comprise most of the workforce within ID-LTCFs, it is also important to evaluate their needs. This can have a substantial impact on developing and implementing AMR, AMS and/or IPC guidelines and policies in ID-LTCFs. [ABSTRACT FROM AUTHOR]

Background: Accurate health information exchange (HIE) is pivotal for good quality of care. However, patients with intellectual disabilities (ID) face challenges in processing and exchanging health information around GP consultations. Knowledge of HIE barriers and facilitators, including the roles of carers, may help to improve GP care for people with ID.Objective: To gain more insight into HIE barriers and facilitators for ID patients in GP care.Methods: A qualitative study exploring GP consultation experiences of people with ID (n = 35), professional carers (n = 20) and relatives (n = 15). Transcripts from interviews and focus groups were analyzed using a framework analysis approach.Results: Analyses resulted in four themes: (i) Recognizing patient health needs; (ii) Impaired doctor-patient communication; (iii) Carers' mediating roles during consultations; and (iv) Patients' autonomy and self-determination. Barriers related to communication skills, lack of time, continuity of carers and physicians, information alignment between relative or professional carer and the GP, and information transfer and recording within the patient network. Facilitating factors related mainly to carer interventions, personal connections with patients and GP communication with patients and carers outside the consultation.Conclusion: There is considerable HIE potential in patients themselves, as well as in their network, although many barriers have to be overcome to profit from this. GP practices are recommended to adjust consultations and communication practices and to facilitate deployment of the patient's network, while still considering patient autonomy. [ABSTRACT FROM AUTHOR]

Background: The quality of the care relationship between a client and a professional is important in long-term care, as most clients depend on support for a lengthy period. The three largest client groups who receive long-term care in the Netherlands are older adults who are physically or mentally frail, people with mental health problems and people with intellectual disabilities. There is little clarity about how generic and variable the determinants of the quality of care relationships are across these client groups. The aim of this study is to explore and compare the determinants of the quality of care relationships in these three client groups in long-term care.Methods: This participatory study involving clients as co-researchers was held in three healthcare organizations, each providing long-term care to one client group. The research was conducted by three teams consisting of researchers and co-researchers. We interviewed clients individually and professionals in focus groups. The focus was on care relationships with professionals where there is weekly recurring contact for at least 3 months. Clients and professionals were selected using a convenience sample. The interviews were coded in open, axial and selective coding. The outcomes were compared between the client groups.Results: The study sample consisted of 30 clients and 29 professionals. Determinants were categorized into four levels: client, professional, between client and professional, and context. The findings show that the majority of the determinants apply to the care relationships within all three client groups. At the professional level, eleven generic determinants were found. Eight determinants emerged at the client level of which two were found in two client groups only. At the level between a client and a professional, six determinants were found of which one applied to mental healthcare and disability care only. Five determinants were found at the contextual level of which two were specific for two client groups.Conclusions: The study yielded a variety of determinants that came to the fore in all three client groups in long-term care. This suggests that including a homogenous client group from a single care setting is not necessary when studying the quality of long-term care relationships. [ABSTRACT FROM AUTHOR]

While people with ID depend on public (health) services more than others, they are difficult to identify within population data. This limits the opportunities to accurately estimate ID prevalence, monitor trends, or to tailor public health interventions according to the needs and characteristics of this groups. By linking relevant databases, this study estimated the prevalence of ID based on public service use, and explored methods to monitor other developments in the ID population. Starting point was the Dutch population register, containing all Dutch adults alive at January 1, 2015. From databases of public services (long-term care, and social benefits) we retrieved information of those individuals who accessed these services with an ID as primary reason. Through this method, 187,149 unique Dutch adults with an 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 among females (1.2%). Most individuals with ID were identified through use of residential care services (n = 91,064; 0.7%). Non-residential ID-related care was utilized by 27,007 individuals (0.2%). Social, employment, or income support due to a (mild) ID was received by 69,078 individuals (0.5%). Mean age in these ID-groups was between 8 and 10 years younger than in the general Dutch population. ID prevalence declined with increasing age across all ID-groups. The ID prevalence in The Netherlands as determined in this study aligned with international estimates. This suggests that national supportive services are well accessible for people with ID. Moreover, it demonstrated that databases from national supportive services can be a useful source to identify individuals with ID at the population level, and it enables structural monitoring of the ID population through linking national databases. [ABSTRACT FROM AUTHOR]

Background: The Dutch healthcare system and the roles of the government and citizens are changing. The government will be limiting its role in care and assistance, while citizens will be expected to increasingly care for themselves and each other. An important instrument to support this transformation involves utilizing people's social network, in the form of the Family Group Conference. Studies on the use of these Family Group Conferences within various sectors are promising. Whether the Family Group Conference is also effective within the integrated care system for young people with intellectual disability (ID) is not yet known.Methods: In this study, anonymized file data were collected from 71 clients who had taken part in a Family Group Conference and a comparable group of 53 clients who had not. Information about the present areas of concern in the family was retrospectively collected and scored by means of a standardized protocol. In addition, information about received care and support from the integrated care system for young people with ID was collected. The areas of concern were assessed at two moments in time, with a 12-month interval. Resource use was assessed for the entire research period of 12 months.Results: The problems in the group of clients who had taken part in a Family Group Conference greatly decreased over a period of twelve months. There was a much smaller decrease in the number of problems in the group that had not taken part in a Family Group Conference. Resource use did not significantly differ between conditions.Conclusions: Our findings reveal that people with ID can also benefit from this approach, something which had been previously doubted. Support from the social network, however, does not substitute formal care. [ABSTRACT FROM AUTHOR]

Objective: Feasibility and reliability of the Mini Nutritional Assessment (MNA) in older adults with intellectual disabilities (ID). Design: Instrument development. Setting: Three care providers for people with ID. Participants: 48 persons aged 50 years and over with borderline to profound ID and their professional caregivers. Measurements: The MNA was performed by means of interviews with participants (N = 12) and caregivers (N = 48) and physical assessments of participants (N = 47). Aspects of feasibility: completion of interview, difficulty of answering interview items, duration of interview and completion of physical assessment. Aspects of reliability: inter-observer reliability between caregivers and between participants and caregivers, test-retest reliability and internal consistency. For inter-observer and test-retest reliability, intraclass correlation coefficients (ICC) were calculated, and for internal consistency Chronbach's alpha. Results: All participants and caregivers completed the interview part. For 7 out of 12 personally interviewed participants and none of the caregivers, at least 3 out of 15 questions were difficult to answer. Mean duration of the interview was 7 minutes in participants and 4 minutes in caregivers. Physical assessment was successfully performed in 40 participants (85.1%). In the remaining 7 participants (14.9%) missing values were retrieved from the medical records. ICCs (95% confidence interval) for test-retest and inter-observer reliability between caregivers were good, 0.85 (0.72-0.92) and 0.86 (0.74-0.92) respectively, but ICC for inter-observer reliability between caregivers and persons with ID was low, 0.03 (−0.51 −0.59). Internal consistency was 0.61. Conclusion: The MNA is feasible and reliable for older people with ID. Interview data can be reliably obtained through caregivers, but not through people with ID. [ABSTRACT FROM AUTHOR]

Objective: This study compared the effectiveness of treating common mental disorders in a collaborative care program in a primary care setting and the effectiveness of treating such disorders through traditional referral of patients to mental health services. Methods: In a cluster randomized controlled trial, 27 general practitioner practices in the Netherlands were designated to provide either collaborative care or usual care. In the collaborative care condition, a mental health care professional worked on site at the primary care practice and was available to provide patients a maximum of five appointments if they were referred by the general practitioner. If indicated, referral to specialized mental health services followed. In the usual care condition, if indicated, general practitioners would refer patients to off-site specialized mental health services. The study included 165 patients. At baseline and at three, six, and 12 months, the study assessed patients' psychopathology, patients' quality of life, and patients' and general practitioners' satisfaction with the treatment provided. Delay in seeing a mental health provider, duration of treatment, number of appointments, and related treatment costs were assessed at 12 months. The data were analyzed with hierarchical linear models. Results: Level of patients' psychopathology and quality of life significantly improved over time, and there were no significant differences between models of care. There was no significant difference in patients' satisfaction with care in either condition. The collaborative care condition resulted in significantly higher satisfaction with services among general practitioners, shorter referral delay, reduced time in treatment, fewer appointments, and consequently lower treatment costs. Conclusions: Collaborative care for a heterogeneous group of persons with common mental disorders seems to be as effective as the usual practice of referral to mental health services for reducing psychopathology, but it is significantly more efficient regarding referral delay, duration of treatment, number of appointments, and related treatment costs. (Psychiatric Services 60:74-79, [ABSTRACT FROM AUTHOR]

The article presents a study that examines mental health service utilization with differing health care systems in Ontario, U.S., and Netherlands. Data came from three similar population-based surveys of adults that assessed DSM-III-R nonpsychotic mental disorders with the Composite International Diagnostic Interview. It is noted that the most striking reported cross-national difference was structural, with many more U.S. respondents reporting financial barriers.

Integrated dual disorder treatment (IDDT), an evidence-based practice for people with severe mental illness and co-occurring substance dependence, is based on several key principles. This article compares implementation facilitators and challenges between IDDT teams in Ohio and the Netherlands for several items: stage-wise group interventions, participation in alcohol and drug self-help groups, the role of the psychiatrist, and the provision of supervision. Implementation efforts for IDDT have been moving ahead in Ohio since its introduction in 1999. The Netherlands introduced IDDT in 2004. Researchers from the Trimbos Institute in Utrecht have been working with consultants from the Ohio Substance Abuse Mental Illness Coordinating Center of Excellence at Case Western Reserve University, Cleveland, Ohio, to learn about facilitators and challenges related to implementing IDDT. [ABSTRACT FROM AUTHOR]

Discusses the rates of use of mental health services from 1979 to 1995 in the Netherlands. Probability of sociodemographic groups to use the services; Growth rate of the usage of health care programs; Present condition of the mental health services of region.

Background: Euthanasia and assisted suicide (EAS) have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: (a) voluntary and well-considered request; (b) unbearable suffering without prospect of improvement; (c) informing the patient; (d) lack of a reasonable alternative; (e) independent second physician's opinion. 'Unbearable suffering' must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees (RTE). The purpose of this study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder.Methods: The 416 case summaries available on the RTE website (2012-2016) were searched for intellectual disability (6) and autism spectrum disorder (3). Direct content analysis was used on these nine cases.Results: Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient's perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis.Conclusions: Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards. [ABSTRACT FROM AUTHOR]

Presents information on the 2000 Special Olympics European Games for mentally handicapped to be held in Groningen, Netherlands, sponsored by Special Olympics Inc. Estimated number of participants; Purpose of the games; Sports included in the Olympics.

Objective: To describe the characteristics of psychogenic non-epileptic (functional) seizures (PNES) in adults with epilepsy and intellectual disability (ID) and to establish differences and risk factors regarding psychosocial functioning between individuals with and without PNES., Methods: Adults with ID and epilepsy living in epilepsy care facilities in The Netherlands were screened for PNES by a neurologist. A control group consisting of people with epilepsy and ID, without PNES, was matched according to age, sex, and level of ID. Objective data were retrieved retrospectively from clinical notes of the resident. Standardized questionnaires and tests, adjusted for people with ID, were obtained from participants and their nursing staff. Differences were analyzed using paired t tests, Wilcoxon signed-rank tests, or McNemar's tests, appropriate for matched case-control studies. Conditional logistic regression identified PNES risk factors., Results: Five hundred forty individuals were screened, of which 42 had PNES (point prevalence 7.8%). In total, 35 cases and 35 controls gave consent. Proxy reports indicated that PNES impacted daily life in 79% by adjusting the individual's schedule, and caused minor injuries in one-third. Those with PNES were mainly female (69%); had a mild (46%) or moderate (37%) level of ID; showed more symptoms of depression (p = .024), anxiety (p = .030), self-injurious behavior (p = .015); and experienced more negative life events (p < .001). Clinically relevant predictors of PNES were the number of negative life events (odds ratio [OR] 1.71, 95% confidence interval [CI] 1.12-2.53) and self-injurious behaviors (OR 5.27, 95% CI .97-28.81)., Significance: Previously, PNES in individuals with ID and epilepsy were described mainly as a reinforced behavioral pattern, due to limited associations with psychiatric disorders. Our results demonstrate that this population does show individual psychosocial vulnerabilities when measured with instruments adjusted for this population, as indicated by proxy reports from daily caregivers. Viewing PNES as an involuntary response, especially for stress-prone individuals with ID, could reduce stigma and improve treatment., (© 2024 International League Against Epilepsy.)

Background. Due to the restrictive measures introduced to tackle the COVID-19 pandemic, therapists working with people with mild intellectual disabilities have had to use video conferencing to continue to conduct their psychological assessments and therapy sessions. This qualitative study explored therapists' experiences of using video conferencing during the initial lockdown period in the Netherlands. Method. In total, seven therapists working at a service organisation supporting people with intellectual disabilities participated in this qualitative study (M = 34.4 years; SD = 6.0, range: 26-42). The therapists documented their experiences via audio recordings, which were subsequently analysed using thematic analysis. Results. Five themes emerged: 1) An immediate transition to virtual working; 2) Developing virtual ways to support service users in both coping with COVID-19 related stress and with continuing therapy; 3) Lacking the appropriate equipment; 4) Limitations in virtually attuning to people with mild intellectual disabilities; and 5) Unforeseen opportunities for distance-based psychological assessments and therapy. Conclusions. This study provides valuable insights into the experiences of therapists using video conferencing to support people with mild intellectual disabilities during the COVID-19 pandemic. These insights can help inform clinical practice with respect to the use of video conferencing for psychological assessment and therapy with people with mild intellectual disabilities. [ABSTRACT FROM AUTHOR]

Introduction: The COVID-19 pandemic had a significant impact on care at the end-of-life due to restrictions and other circumstances such as high workload and uncertainty about the disease. The objective of this study is to describe the degree of various signs experienced by healthcare providers throughout the first 18 months of the pandemic and to assess what provider's characteristics and care circumstances related to COVID-19 are associated with distress. Methods: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic's first 18 months. Data of four time periods were analyzed using descriptive statistics, logistic regression analysis and Generalized Estimating Equation. Results: Of the respondents (n=302) the majority had a nursing background (71.8%) and most worked in a hospital (30.3%). Although reported distress was highest in the first period, during the first wave of COVID-19 pandemic, healthcare providers reported signs of distress in all four time periods. Being more stressed than usual and being regularly exhausted were the most common signs of distress. Healthcare providers working in nursing homes and hospitals were more likely to experience signs of distress, compared to healthcare providers working in hospice facilities, during the whole period of 1.5 years. When HCPs were restricted in providing post-death care, they were more likely to feel more stressed than usual and find their work more often emotionally demanding. Conclusion: A substantial amount of healthcare providers reported signs of distress during the first 1.5 years of the COVID-19 pandemic. A cause of distress appears to be that healthcare providers cannot provide the care they desire due the pandemic. Even though the pandemic is over, this remains an important and relevant finding, as high workload can sometimes force healthcare providers to make choices about how they provide care. Given that this can cause prolonged stress and this can lead to burnout (and HCPs leaving their current positions), it is now especially important to continue observing the long term developments of the well-being of our healthcare providers in palliative care and provide timely and adequate support where needed. [ABSTRACT FROM AUTHOR]

Previous work has shown that technology can facilitate the communication of emotions, social touch, and social presence through haptic devices, meaning devices that provide a haptic stimulation. However, for special user groups living in long-term care facilities, such as people with dementia, the applications of these haptic devices are not apparent. The aim of this study is to understand how haptic devices can be used in intramural care facilities in times of social isolation, focusing on haptic devices that utilize haptic sensation. Five haptic devices were tested at three care facilities. Insights from this study highlight the potential of haptic devices to enhance sensory, affective, and social experiences during video calling between residents and their relatives. Moreover, the importance of the tactile sensation and form factor of haptic devices in the care context is addressed, along with insights on how to create the appropriate atmosphere during video calling. [ABSTRACT FROM AUTHOR]

Introduction: Patients living with obesity often experience weight stigma in healthcare settings, which has worrying consequences for their healthcare experiences. This cross‐sectional study aimed to: (1) provide an overview of stigmatising experiences in healthcare settings reported by adults living with varying classes of obesity, (2) identify associations among patient characteristics and perceived weight stigma and (3) investigate the association between perceived weight stigma and person‐centred care (PCC). Methods: Dutch adults living with obesity classes I (body mass index [BMI]: 30 to <35 kg/m2; n = 426), II (BMI: 35 to <40 kg/m2; n = 124) and III (BMI: ≥40 kg/m2; n = 40) completed measures of perceived weight stigma in healthcare settings and PCC. Descriptive, correlational and multivariate analyses were conducted. Results: Of patients living with classes I, II and III obesity, 41%, 59% and 80%, respectively reported experiences of weight stigma in healthcare settings. Younger age, greater obesity severity and the presence of chronic illnesses were associated with greater perceived weight stigma. Greater perceived weight stigma was associated with lower PCC. Conclusion: The results of this study emphasise the significant role of weight stigma in the healthcare experiences of patients living with obesity. Reducing weight stigma is expected to improve PCC and the overall quality of care for these patients. Minimising weight stigma will require efforts across various healthcare domains, including increasing awareness among healthcare professionals about sensitive communication in weight‐related discussions. Patient Contribution: Our sample consisted of patients living with obesity. Additionally, patients were involved in the pilot testing and refinement of the PCC instrument. [ABSTRACT FROM AUTHOR]

Background: Providing care for ageing and vulnerable people with intellectual disability (ID) is challenging, and professionals working in ID care often have limited experience in palliative care. The current study provides insight into palliative care practices in ID care services and competencies of professionals and identifies ways to improve palliative care for people with ID. Methods: For this study ten services in the Netherlands were recruited that provide care for people with mild to profound ID. Professionals in each of these services conducted a self-assessment of their palliative care policies and practices based on nine core element of palliative care described in the Dutch Quality Framework for Palliative Care. The self-assessment included a medical file review of a total of 100 people with ID who died non-suddenly. In addition, 424 professionals from the services returned a digital questionnaire on palliative care competencies and training needs. Results: The self-assessments showed that individual care plans were recorded for people with ID and that multidisciplinary teams provided physical, psychological, social and spiritual care. However, other core elements of palliative care, such as cooperation with other organisations and expertise in palliative care, were less present in ID care services. Only half of the services collaborated with regional organisations in palliative care, and most services listed no requirements for the palliative care skills of their professionals. The questionnaire showed that almost 10% of the professionals reported that they were not at all competent in providing palliative care, and 74% felt that they needed training in palliative care. Reported areas for improvement in the provision of palliative care were increasing the quality of palliative care, improving the expertise of professionals and identifying palliative care needs earlier. Conclusions: To improve palliative care in ID care services changes are required both in competencies of professionals, and organisational policies and practices. Services should enhance awareness about palliative care for people with ID, strengthen collaboration with palliative care services, and offer training or support for professionals in assessing and meeting the needs of people with ID at the end of life. [ABSTRACT FROM AUTHOR]

Background: In recent years several national ZonMw research programs in the Netherlands have focused on integrated care for people with complex care needs. Many different professionals and legal domains are involved, and there is a growing demand to deliver coherent care that is better suited to the clients needs. In different programs, researchers, health-care professionals and clients, work together in academic networks to establish integrated care. Elderly care and support: The Dutch National Care for the Elderly Program 2008-2017 stimulated integrated care for frail elderly. In eight regional networks, over 650 organizations joined forces in projects aiming to improve care and support that is better suited to the needs of elderly. Researchers worked together with general practitioners, nurses, communityworkers, municipalities, health-insurers and elderly. In more than 200 projects over 40.000 elderly people participated. Elderly themselves performed an active role in agenda-setting panels and forums. The projects focused on different subjects such as early-detection of frailty, coordination of care and support at home, and patient journeys after hospitalization. Hospital at home: In the program Memorabel research projects aim for integrated care for people with dementia. Especially for this group of elderly, the hospital is a relatively unsafe environment. The hospital at home care program works with patients with dementia at the emergency department. Hospital level care delivered at home is compared to hospital care as usual. The goal is to investigate feasibility, costs and outcomes, such as time spend at home, quality of life, functioning and recovery. This study is conducted in a network of partners who cooperate in an action-research setting. Acquired brain impairment: The program Gewoon Bijzonder is intended for people with intellectual disabilities and their health care professionals. Experience experts, researchers, health care professionals and policy makers are stimulated to work together in networks. One of the networks focuses on NAH acquired brain injury gaining new knowledge on how people with NAH can function more independently in society. Results of the research will lead to better access of information, better participation of people with NAH in society and better care and support for people with NAH, their relatives and friends. Aims and Objectives: This workshop gives insight in how to work in academic networks of research, together with practice and policy on more integrated care on people with complex needs. Format timing, speakers, discussion, group work, etc:Three presentations will be given. One on the network-level and two on the project level. We will discuss the results with the target audience. Target audience: Researchers, health care professionals, clients and policy makers. Learnings/Take away: We will present a few examples on how to work on more integrated care on people with complex needs. We will discuss encountered issues, for example those concerning data sharing, measurement of patient satisfaction and interpretation of the results. And we will share learned lessons. [ABSTRACT FROM AUTHOR]

Introduction: In 24/7 disability care facilities, patient‐reported experience measures (PREMs) are important to help healthcare professionals understand what matters to care users and to improve the quality of care. However, the successful implementation of a PREM is complex. In a Dutch disability care organization, stakeholders cocreated tailored implementation strategies aimed at improving the use and integration of a qualitative PREM. This study gives insights into the uptake and experiences with these cocreated implementation strategies and the perceived impact of the set of strategies. Methods: We performed a prospective process evaluation between February 2020 and February 2021. We collected data in three disability care facilities from 35 care users, 11 professionals, 3 facility managers and 4 organization representatives. Data collection included observations during kick‐offs and learning goal meetings and several attendance checklists. We collected 133 questionnaires (Time 0 and Time 1). We conducted 35 individual semistructured interviews and an online focus group interview. Quantitative data were analysed using descriptive statistics and qualitative data using directed content analysis. Results: The exposure to and adoption of strategies was between 76% and 100%. Participants were positive about tailoring the strategies to each facility. Implementation was hindered by challenges in care users' communication and COVID‐19. The perceived impact referred to an improved understanding of the goal and added value of the PREM and better preparation and execution of the PREM. The impact of the set of strategies was mainly experienced on the micro level. Conclusion: The uptake of the cocreated implementation strategies was acceptable. The participants valued the tailored approach, which enabled them to focus on facility‐specific learning goals. Stakeholder engagement and co‐created strategies may have strengthened the adoption of and experiences with the implementation. Patient or Public Contribution: In this article, we present the process evaluation of implementation strategies for the integrated use of a PREM in disability care. A development group consisting of communication vulnerable care users, trainers and professionals developed the implementation strategies. The disability care organization was responsible for the planning and organization of the implementation process. During the process evaluation the end users, trainers, professionals and managers tailored the implementation strategies to their own settings and needs. Researchers observed this implementation process and interviewed the stakeholders about their experiences and the perceived impact. [ABSTRACT FROM AUTHOR]

Background: Yearly, almost six percent, which is more than 1,000.000 people, in the Netherlands receive mental health treatment, which usually improves their quality of life. Concurrently, mental healthcare professionals recognize clinically refractory cases in which improvement fails to occur, with severe ongoing burdens for patients. The Dutch Centre for Consultation and Expertise (CCE) is available to support such refractory cases. The Dutch government's (financial) facilitation of consultation through the CCE is unique in the world. CCE consultations provide therefore unique insight into and an overview of refractory cases in mental health services. The objective of this study was to gain insight into the commonalities underlying the reasons for CCE consultations and the solutions proposed that play roles in (the reduction of) refractory cases for which consultation has been requested. Methods: This descriptive study was conducted with quantitative and qualitative data from 472 CCE consultations in the Netherlands. Using descriptive statistics and thematic content analysis, four exemplary situations were distilled from the qualitative data. Results: Most (83%) cases in the sample could be explained with four exemplary situations involving self-harm (24.2%), aggression (21.8%), self-neglect (24.4%), and socially unacceptable behavior (12.5%), respectively. Each situation could be characterized by a specific interaction pattern that unintentionally maintained or aggravated the situation. At the time of closure of the consultation applicants' questions had been answered and their situations had improved in 60.4% of cases. Conclusions: This study offers an overview of approaches that provided new perspectives for patients and professionals in many refractory cases in the Dutch mental health services. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]