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Abstract Background Client-centred care serves as the foundation for healthcare policy. Indeed, various instruments for assessing clients’ experiences of care and support are increasingly used to provide insights into the quality, and client-centred nature, of the care and support provided, which, in turn, aids the development of subsequent improvements. The unique characteristics of care and support for people with intellectual disabilities (ID), such as the need for both lifelong and life-wide care and support across all aspects of clients’ lives, led to an initiative within Dutch ID care to jointly develop a range of instruments to assess the experiences of clients receiving ID care and support. Individual clients’ experiences and suggestions for improvement, which are embedded in clients’ care plan cycles, constitute the foundation of this Range of Instruments. This paper provides a unique, bottom-up, exhaustive account of the process of developing the Range of instruments used to assess the experiences of clients in the field of Dutch ID care. Methods Relevant documents at three levels (i.e. 1) national documents, such as policy papers and governmental reports, 2) documents and reports from the Dutch Association of Healthcare Providers for People with Disabilities (VGN) along with minutes from the meetings of the expert Committee who assessed the instruments, and 3) correspondence between the Committee and developers as well as the forms used in the assessment process for each instrument) were qualitatively analysed by two researchers who had no affiliation with the development of the Range of instruments used to assess clients’ experiences in ID care and support. All of the documents were inductively coded using a thematic analytical approach. Informants who were either currently or previously involved in the development of these instruments were asked to provide clarification over the documents themselves and to explain the context in which they were produced. Results The development of the range of instruments can be classified into four phases, namely: 1) supporting the bottom-up development of initiatives to assess clients’ experiences, 2) focusing on learning and further development, 3) stimulating exchange between the developers and users of the instruments and the Committee responsible for assessing them, and 4) further development in response to the changing times and new landscape. Conclusions The range of instruments were found to be appropriate for a variety of clients in ID care and support, specifically in terms of assessing their individual experiences and gaining insight into their suggestions for improvement, and effective in terms of collaboratively improving the quality of ID care and support. In so doing, these instruments potentially provide an avenue through which clients’ experiences can be embedded in the process of ID care and support. Other specific features in the development of these instruments, namely their incremental adoption, ongoing evaluation and strong practice orientation, were also found to be suitable for other care contexts’ attempts to respond to the top-down policy objectives of client-centeredness and translating outcomes into direct care practice.

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]

Abstract 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.

Abstract 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

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]

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: 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: There has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors. Methods: This was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (n = 990); questionnaires to carers (n = 88); interviews with: hospital staff including senior managers, nurses and doctors (n = 68) and carers (n = 37); observation of in-patients with intellectual disabilities (n = 8); monitoring of incident reports (n = 272) and complaints involving people with intellectual disabilities. Results: Staff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult. The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders. Conclusions: The events leading to avoidable harm for patients with intellectual disabilities are not always recognised as safety incidents, and may be difficult to attribute as causal to the harm suffered. Acts of omission (failure to give care) are more difficult to recognise, capture and monitor than acts of commission (giving the wrong care). In order to improve patient safety for this group, the reasonable adjustments needed by individual patients should be identified, documented and monitored. [ABSTRACT FROM AUTHOR]

Background: People with profound intellectual and multiple disabilities (PIMD) have combined severe intellectual and physical disability and need extensive health care support. They cannot communicate by spoken language and need around the clock support. The health care for people with PIMD is typically provided by a number of different health care services in collaboration with residential care staff and their managers. The quality of health care for people with PIMD are important due to their limited ability to communicate their needs. The aim of this study was to explore residential care staff and manager's experiences and views of health care services for adults with PIMD.Methods: Thirteen semi-structured interviews with residential care staff (n = 7) and managers (n = 6) were conducted and analysed using qualitative content analysis.Results: The informants expressed a variety of experiences, under the theme was Quality of health care is enhanced through residential care staff. The theme was comprised of four subthemes: (1) Individually tailored support promotes quality, (2) Accessibility requires adaptation and prioritization by healthcare providers, (3) Disability competence promotes quality and safety and (4) Complex collaboration conditions between the person with PIMD, residential care staff and disability health care.Conclusions: The residential care staff create quality of care in their role as representatives for adults with PIMD. The care situation is complex and requires adequate competence in the disability, the individual's needs and adaptations to ensure quality of health care. It is also important to build collaboration with other services that are involved in the care of people with PIMD. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (ID) are known to have more diseases and are believed to start aging earlier than the general population. The population of older people with ID is growing, but knowledge about their use of healthcare is limited. This study aimed to explore somatic healthcare utilisation patterns among people with ID living in Sweden, in comparison with the general population from 2002 to 2012. Methods: Participants were a group of people with ID (n = 7936) aged 55 years and older in 2012, and an equal-sized, birth year and sex matched, general population sample (n = 7936). Participants were divided into age groups of 5-year intervals. Data regarding in- and outpatient care were collected from the Swedish National Patient Register. Results: In the younger age groups, the ID group had higher healthcare utilisation compared with the general population sample, with higher risks for planned and unplanned somatic in- and outpatient care, particularly for unplanned inpatient registrations. Decreasing patterns were seen with age; with lower risks in the ID group for the oldest age groups. This was most evident in planned somatic in- and outpatient care. In those with at least one registration, the ID group had a longer unplanned length of stay in the younger age groups, but fewer planned visits to physicians in somatic outpatient care compared with the control group. Conclusions: Compared with the general population, people with ID show higher healthcare utilisation in younger age groups. Healthcare utilisation decreases with age, and in old age, fewer people with ID use healthcare compared with the general population. The barriers to accessing planned healthcare for older people with ID need more investigation. [ABSTRACT FROM AUTHOR]

Background This study aimed to investigate the utilization of preventive health services in the adults with intellectual disabilities from the nationwide database. Methods The research method of this study is secondary data analysis. The data was obtained from three nationwide databases from 2006 to 2008. This study employed descriptive statistics to analyze the use and rate of preventive health services by intellectual disabled adults. Chisquare test was used to determine the relationship between the utilization of preventive health services and these variables. Multivariate logistic regression analysis was used to explore the factors that affect intellectual disabled adults' use of preventive health services. Results Our findings indicated 16.65% of people with intellectual disabilities aged over 40 years used the preventive health services. Females were more frequent users than males (18.27% vs. 15.21%, p <0.001). The utilization rate decreased with increasing severity of intellectual disabilities. The utilization was lowest (13.83%) for those with very severe disability, whereas that was the highest (19.38%) for those with mild severity. The factors significantly influencing utilization of the services included gender, age, and marital status, urbanization of resident areas, monthly payroll, low-income household status, catastrophic illnesses status and relevant chronic diseases and severity of disability. Conclusions Although Taiwan's Health Promotion Administration (HPA) has provided free preventive health services for more than 15 years, people with intellectual disabilities using preventive health care tend to be low. Demographics, economic conditions, health status, relevant chronic diseases, environmental factor, and severity of disability are the main factors influencing the use of preventive healthcare. According to the present findings, it is recommended that the government should increase the reimbursement of the medical staff performing health examinations for the persons with intellectual disabilities. It is also suggested to conduct media publicity and education to the public and the nursing facilities for the utilization of adult preventive health services. [ABSTRACT FROM AUTHOR]

Background: The medical care chain around Down syndrome (DS) is complex, with many multidisciplinary challenges. The current quality of care is unknown. Outcome-oriented quality indicators have the potential to improve medical practice and evaluate whether innovations are successful. This is particularly interesting for the evolving care for people with DS and intellectual disabilities (ID). The aim of this study was to identify existing indicators for medical DS care, by reviewing the literature.Methods: We systematically searched six databases (PubMed, EMBASE, Web of Science, CINAHL, PsycINFO, Google Scholar) for studies concerning the development and implementation of quality indicators for DS and/or ID care, published until February 1st 2015. The scoping review method was used, including systematic data extraction and stakeholder consultation.Results: We identified 13 studies concerning quality indicators for ID care that obtained data originating from questionnaires (patient/family/staff), medical files and/or national databases. We did not find any indicator sets specifically for DS care. Consulted stakeholders did not come up with additional indicator sets. Existing indicators for ID care predominantly focus on support services. Indicators in care for people with ID targeting medical care are scarce. Of the 70 indicators within the 13 indicator sets, 10% are structure indicators, 34% process, 32% outcome and 24% mixed. Ten of the 13 sets include indicators on the WHO quality dimensions 'patient-centeredness', 'effectiveness' and 'efficiency' of care. 'Accessibility' is covered by nine sets, 'equitability' by six, and 'safety' by four. Most studies developed indicators in a multidisciplinary manner in a joint effort with all relevant stakeholders; some used focus groups to include people with ID.Conclusion: To our knowledge, this is the first review that searched for studies on quality indicators in DS care. Hence, the study contributes to existing knowledge on DS care as well as on measuring quality of care. Future research should address the development of a compact set of quality indicators for the DS care chain as a whole. Indicators should preferably be patient-centred and outcome-oriented, including user perspectives, while developed in a multidisciplinary way to achieve successful implementation. [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]

Background: In Brazil, community health workers have gathered monthly information on people with disabilities to maintain the Primary Care Information System since 1998; however, few studies have used this database for scientific or public health policy purposes.Objectives: This study aimed to evaluate the reliability of information on people with disabilities gathered by community health workers in primary care services.Method: This was a cross-sectional population-based study conducted in two highly consanguineous communities, involving a population of 18,458 inhabitants in Northeastern Brazil. To study the prevalence of people with disabilities, estimations performed by health workers were compared with those obtained by researchers who interviewed 15.6% of the total population. To study the agreement of the information, data on 106 people with disabilities completed independently by researchers and health workers were compared to evaluate the degree of agreement for 28 variables analysed. Kappa statistics (κ) were used to calculate the inter-rater agreement.Results: The prevalence of disability estimated by community health workers was 3.01 and 2.00% for city A and B, respectively, while the percentages obtained by researchers were 6.72 and 5.65%, respectively, showing an underestimation of prevalence according to community health workers. The Kappa index value obtained for all data analysed (2,589 items excluding losses) was 0.808 (p < 0.01), indicating an almost perfect consistency of information collected by health workers compared to by researchers.Conclusion: Community health workers collected information with a high degree of reliability, although the identification of the prevalence of disabled individuals was potentially impaired due to the work process. [ABSTRACT FROM AUTHOR]

Background: Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia.Methods: Participants comprised caregivers (n = 102) of children with developmental disorders attending two child mental health clinics in Addis Ababa. The majority (66.7%; n = 68) had a diagnosis of intellectual disability (ID); 34 children (33.3%) had autism spectrum disorder (ASD) as their primary diagnosis. All caregivers were administered a structured questionnaire via a face-to-face interview, which included an adaptation of the Family Interview Schedule, closed questions about socio-demographic characteristics, explanatory models of illness, type of interventions used or desired and coping strategies, and an open ended question regarding the family's unmet needs.Results: Most caregivers reported experience of stigma: 43.1% worried about being treated differently, 45.1% felt ashamed about their child's condition and 26.7% made an effort to keep their child's condition secret. Stigma did not depend on the type of developmental disorder, the child's age or gender, or on the age or level of education of the caregiver (all p > 0.05). Reported stigma was significantly higher in caregivers who had sought traditional help (p < 0.01), provided supernatural explanations for their child's condition (p = .02) and in caregivers of Orthodox Christian faith (p = .03). Caregivers gave a mixture of biomedical explanations (e.g. head injury (30.4%) or birth complications (25.5%)) and supernatural explanations (e.g. spirit possession (40.2%) or sinful act (27.5%)) for their child's condition. The biggest reported unmet need was educational provision for their child (74.5%), followed by treatment by a health professional (47.1%), financial support (30.4%) and expert help to support their child's development (27.5%). Most caregivers reported that talking to health professionals (86.3%) and family (85.3%) helped them to cope. Many caregivers also used support from friends (76.5%) and prayer (57.8%) as coping mechanisms.Conclusions: This study highlights the stigma experienced by families caring for a child with a developmental disorder. Designing interventions appropriate for low-income settings that improve awareness about developmental disorders, decrease stigma, improve access to appropriate education and strengthen caregivers' support are needed. [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]

Background: For several years mobile X-ray equipment has been routinely used for imaging in patients too unwell within the hospital, when transportation to the radiology department was inadvisable. Now, mobile X-ray examinations are also used outside the hospital. The literature describes that fragile patients may benefit from mobile X-ray, but we need to provide insights into the breadth, depth and gaps in a body of literature.Methods: The scoping review was performed by searching PubMed, Cinahl, Embase, EconLit and Health Technology Assessment. English-, Danish-, Norwegian-, German-, Italian-, French- and Swedish-language studies, published 1.1.2009-1.5.2020 about mobile X-ray outside the hospital were included. Participants were patients examined using mobile X-ray as the intervention. PRISMA was used when eligible to build up the review. To extract data from the selected articles, we used a structured summary table.Results: We included 12 studies in this scoping review. The results were divided into four topics:1. Target population 2. Population health 3. Experience of care and 4. Cost effectiveness. The main findings are that target population could be larger for instance including hospice patients for palliative care, group dwelling for people with intellectual disabilities, or psychiatric patients, population health may be improved, image quality seems to be good and mobile X-ray may be cost effective. Limitations of language, databases and grey literature may have resulted in studies being missed.Conclusions: Mobile X-ray may be used outside hospital. There seems to be potential benefits to both patients and health care staff. Based on the published studies it is not possible to draw a final conclusion if mobile X-ray examination is a relevant diagnostic offer and for whom. Further studies are needed to assess the feasibility of use in fragile patients, also regarding staff, relatives and societal consequences and therefore the topic mobile X-ray needs more research. [ABSTRACT FROM AUTHOR]

Background: During the past two decades, consumers, providers and policy makers have recognized the role of supported housing intervention for persons diagnosed with serious mental illness (SMI) to be able to live independently in the community. Much of supported housing research to date, however, has been conducted in large urban centers rather than northern and rural communities. Northern conditional and contextual issues such as rural poverty, lack of accessible mental health services, small or non-existing housing markets, lack of a continuum of support or housing services, and in some communities, a poor quality of housing challenge the viability of effective supported housing services. The current research proposal aims to describe and evaluate the processes and outcomes of supported housing programs for persons living with SMI in northern and rural communities from the perspective of clients, their families, and community providers. Methods: This research will use a mixed method design guided by participatory action research. The study will be conducted over two years, in four stages. Stage I will involve setting up the research in each of the four northern sites. In Stage II a descriptive cross-sectional survey will be used to obtain information about the three client outcomes: housing history, quality of life and housing preference. In Stage III two participatory action strategies, focus groups and photo-voice, will be used to explore perceptions of supported housing services. In the last stage findings from the study will be re-presented to the participants, as well as other key community individuals in order to translate them into policy. Conclusion: Supported housing intervention is a core feature of mental health care, and it requires evaluation. The lack of research in northern and rural SMI populations heightens the relevance of research findings for health service planning. The inclusion of multiple stakeholder groups, using a variety of data collection approaches, contributes to a comprehensive, systems-level examination of supported housing in smaller communities. It is anticipated that the study's findings will not only have utility across Ontario, but also Canada. [ABSTRACT FROM AUTHOR]

Background: Because individuals with HIV/AIDS often have complex medical and social needs, the impact of housing status on medical service utilization is difficult to isolate from the impact of conditions that may worsen during periods of homelessness such as depression and substance abuse. We examine whether episodes of homelessness are independently associated with suboptimal medical utilization even when accounting for concurrent addiction severity and depression. Methods: We used data from a 30-month cohort of patients with HIV/AIDS and alcohol problems. Housing status, utilization (ambulatory visits, emergency department (ED) visits, and hospitalizations) and other features were assessed with standardized research interviews at 6- month intervals. Multivariable longitudinal regression models calculated incidence rate ratios (IRR) comparing utilization rates during 6-month intervals (homeless versus housed). Additional models assessed whether addiction severity and depressive symptoms could account for utilization differences. Results: Of the 349 subjects, 139 (39%) reported homelessness at least once during the study period; among these subjects, the median number of nights homeless per 6-month interview period was 30. Homelessness was associated with higher ED utilization (IRR = 2.17; 95% CI = 1.72-2.74) and hospitalizations (IRR = 2.30; 1.70-3.12), despite no difference in ambulatory care utilization (IRR = 1.09; 0.89-1.33). These associations were attenuated but remained significant when adjusting for addiction severity and depressive symptoms. Conclusion: In patients with HIV/AIDS and alcohol problems, efforts to improve housing stability may help to mitigate intensive medical utilization patterns. [ABSTRACT FROM AUTHOR]

Background: Mechanisms by which liaison mental health services (LMHS) may bring about improved patient and organisational outcomes are poorly understood. A small number of logic models have been developed, but they fail to capture the complexity of clinical practice.Method: We synthesised data from a variety of sources including a large national survey, 73 in-depth interviews with acute and liaison staff working in hospitals with different types of liaison mental health services, and relevant local, national and international literature. We generated logic models for two common performance indicators used to assess organisational outcomes for LMHS: response times in the emergency department and hospital length of stay for people with mental health problems.Results: We identified 8 areas of complexity that influence performance, and 6 trade-offs which drove the models in different directions depending upon the balance of the trade-off. The logic models we developed could only be captured by consideration of more than one pass through the system, the complexity in which they operated, and the trade-offs that occurred.Conclusions: Our findings are important for commissioners of liaison services. Reliance on simple target setting may result in services that are unbalanced and not patient-centred. Targets need to be reviewed on a regular basis, together with other data that reflect the wider impact of the service, and any external changes in the system that affect the performance of LMHS, which are beyond their control. [ABSTRACT FROM AUTHOR]

Background: Previous research into improving patient safety has emphasised the importance of responding to and learning from concerns raised by service users and carers. Expertise gained by the experiences of service users and their carers has also been seen as a potential resource to improve patient safety. We know little about the ease of raising concerns within mental health services, and the potential benefits of involving service users and carers in safety interventions. This study aimed to explore service user and carer perceptions of raising safety concerns, and service user, carer and health professional views on the potential for service user and carer involvement in safety interventions.Methods: UK service users, carers and health professionals ( n= 185) were recruited via social media to a cross-sectional survey focussed on raising concerns about safety issues and views on potential service user and carer participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were coded into categories.Results: The sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the process of raising concerns, especially while experiencing mental ill health. There was universal support from health professionals for service user and carer involvement in safety interventions and over half the service users and carers supported involvement, primarily due to their expertise from experience.Conclusions: Mental health service users and carers experience difficulties in raising safety concerns meaning that potentially useful information is being missed. All the health professionals and the majority of service users and carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their experiences are taken into consideration. The results provide guidance for future research about the most effective ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer involvement in improving safety in mental health care can be further developed. [ABSTRACT FROM AUTHOR]

Abstract 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’.

Background: To address the impact of using multiple sources of data in the United States Medicare Current Beneficiary Survey (MCBS) compared to using only one source of data to identify those with neuropsychiatric diagnoses.Methods: Our data source was the 2010 MCBS with associated Medicare claims files (N = 14, 672 beneficiaries). The MCBS uses a stratified multistage probability sample design to select a nationally representative sample of Medicare beneficiaries. We excluded those participants in Medicare Health Maintenance Organizations (n = 3894) and performed a cross-sectional analysis. We classified neuropsychiatric conditions according to four broad categories: intellectual/developmental disorders, neurological conditions affecting the central nervous system (Neuro-CNS), dementia, and psychiatric conditions. To account for different baseline prevalence differences of the categories we calculated the relative increase in prevalence that occurred from adding information from claims in addition to the absolute increase to allow comparison among categories.Results: The estimated proportion of the sample with neuropsychiatric disorders increased to 50.0 (both sources) compared to 38.9 (health survey only) and 33.2 (claims only) with an overlap between sources of only 44.1 %. Augmenting health survey data with claims led to an increase in estimated percentage of intellectual/developmental disorders, psychiatric disorders, Neuro-CNS disorders and dementia of 1.3, 5.9, 11.5 and 3.8 respectively. In the community sample, the largest relative increases were seen for dementia (147.6 %) and Neuro-CNS disorders (87.4 %). With the exception of dementia, larger relative increases were seen in the facility sample with the greatest being for intellectual/developmental disorders (121.5 %) and Neuro-CNS disorders (93.8 %).Conclusions: The magnitude of potentially underestimated sample proportions using health survey only data varied strikingly according to the category of diagnosis and setting. Augmentation of survey data with claims appears essential particularly when attempting to estimate proportion of the sample affected by conditions that cause cognitive impairment which may affect ability to self-report. Augmenting proxy survey data with claims data also appears to be essential when ascertaining proportion of the facility-dwelling sample affected by neuropsychiatric disorders. [ABSTRACT FROM AUTHOR]

Background: Goal setting for persons within health and social care environments can be a challenging task; although health and social care settings aim to address a person's care needs, the literature tends to focus on health. Person-centred care should encompass the goals/needs/wants of the person, whether these goals focus on career, relationship, and/or health domains. To understand how a person-centred participatory goal setting process is carried out in a care environment, we used an integrated knowledge translation approach. Methods: We conducted 11 semi-structured interviews with community-care staff to understand a person-centred planning process, including key components and impacts. Results: The interviews provide a thorough understanding of an implemented approach to person-centred plans, including its creation, implementation, and benefits (for the person-supported, family, friends, and staff). Person-centred plans provide a map with which to plan activities based on a persons' goals, interests, and capacities, and have positive impacts for the person-supported, family, friends, and staff. Conclusions: Our study highlights how a community-care organization can facilitate person-centred services through person-centred plans and has implications for wider uptake of person-centred plans in community-care organizations. [ABSTRACT FROM AUTHOR]

Background: There is a lack of theory-based interventions for direct support professionals (DSPs) to support a healthy lifestyle for people with moderate to profound intellectual disabilities (ID) despite their major role in this. This study aims to evaluate the preparation, implementation, and preliminary outcomes of a theory-based training and education program for DSPs to learn how to support these individuals.Methods: The program consisting of e-learning, three in-person sessions, and three assignments was implemented. The implementation process was evaluated with a mixed method design with the following components: preparation phase, implementation phase, and the outcomes. These components were measured with project notes, questionnaires, interviews, reflections, assignments, food diaries, Actigraph/Actiwatch, and an inventory of daily activities.Results: Regarding the preparation phase, enough potential participants met the inclusion criteria and the time to recruit the participants was 9 months. The program was implemented in four (residential) facilities and involved individuals with moderate to profound ID (n = 24) and DSPs (n = 32). The e-learning was completed by 81% of the DSPs, 72-88% attended the in-person sessions, and 34-47% completed the assignments. Overall, the fidelity of the program was good. DSPs would recommend the program, although they were either negative or positive about the time investment. Mutual agreement on expectations were important for the acceptability and suitability of the program. For the outcomes, the goals of the program were achieved, and the attitudes of DSPs towards a healthy lifestyle were improved after 3 months of the program (nutrition: p = < 0.01; physical activity: p = 0.04). A statistically significant improvement was found for food intake of people with ID (p = 0.047); for physical activity, no statistically significant differences were determined.Conclusions: The theory-based program consisting of a training and education section for DSPs to support a healthy lifestyle for people with moderate to profound ID was feasible to implement and, despite some barriers regarding time capacity and mutual expectations, it delivered positive changes in both persons with moderate to profound ID and DSPs. Thus, the program is a promising intervention to support DSPs. [ABSTRACT FROM AUTHOR]

Background: To reduce the impact of chronic diseases (cardiovascular disease, diabetes mellitus type 2, and chronic lung disease (asthma or chronic obstructive pulmonary disease (COPD)), it is imperative that care is of high quality and suitable to patients' needs. Patients with intellectual disabilities (ID) differ from the average patient population in general practice because of their limitations in adaptive behaviour and intellectual functioning, and concomitant difficulties recognising and reacting to disease symptoms, proactively searching health information, and independently managing diseases effectively. Because of these differences, information on their care needs is essential for suitable chronic disease management (CDM). Inadequate recognition of the care needs of this vulnerable population may hamper the harmonisation of evidence-based and person-centred care, compounded by issues such as stigma, misconceptions, and diagnostic overshadowing. This study therefore aimed to explore the needs of patients with ID from perspectives of both patients and of healthcare providers (HCPs) in the context of CDM in general practice. Methods: This qualitative study recruited patients with ID for face-to-face individual interviews and HCPs for focus groups. With the Chronic Care Model as the underlying framework, semi-structured interviews and focus-group guides were defined to explore patients' care needs and HCPs' perspectives. All interviews and focus groups were audio-recorded and transcribed verbatim. Using Atlas.ti software, data were analysed using reflexive thematic analysis. Results: Between June and September 2022, 14 patients with ID and cardiovascular disease, diabetes mellitus type 2, and/or asthma/COPD were interviewed; and 32 general practitioners and practice nurses participated in seven focus groups. We identified six care needs underpinning suitable CDM: trusting relationship between patient and HCP; clear expectations about the CDM process; support in disease management; directive decision-making; support in healthy lifestyle; accessible medical information. Conclusions: This vulnerable patient population has complex care needs that must be acknowledged for suitable CDM. Although HCPs largely recognise these needs, organisational factors and lack of training or experience with patients with ID hamper HCPs' ability to fully adjust care provision to these needs. Access to, and knowledge of, easy-language information on chronic diseases and communication guidelines could aid HCPs to facilitate patients in managing their diseases more adequately. [ABSTRACT FROM AUTHOR]

Background: Pharmacist clinics offer professional pharmaceutical services that can improve public health outcomes. However, primary healthcare staff in China face various barriers and challenges in implementing such clinics. To identify existing problems and provide recommendations for the implementation of pharmacist clinics, this study aims to assess the knowledge, attitudes, and practices of pharmacist clinics among primary healthcare providers. Methods: A cross-sectional survey based on the Knowledge-Attitude-Practice (KAP) model, was conducted in community health centers (CHCs) and private hospitals in Shanghai, China in May, 2023. Descriptive analytics and the Pareto principle were used to multiple-answer questions. Chi-square test, Fisher's exact test, and binary logistic regression models were employed to identify factors associated with the knowledge, attitudes, and practices of pharmacist clinics. Results: A total of 223 primary practitioners participated in the survey. Our study revealed that most of them had limited knowledge (60.1%, n = 134) but a positive attitude (82.9%, n = 185) towards pharmacist clinics, with only 17.0% (n = 38) having implemented them. The primary goal of pharmacist clinics was to provide comprehensive medication guidance (31.5%, n = 200), with medication education (26.3%, n = 202) being the primary service, and special populations (24.5%, n = 153) identified as key recipients. Logistic regression analysis revealed that education, age, occupation, position, work seniority, and institution significantly influenced their perceptions. Practitioners with bachelor's degrees, for instance, were more likely than those with less education to recognize the importance of pharmacist clinics in medication guidance (aOR: 7.130, 95%CI: 1.809–28.099, p-value = 0.005) and prescription reviews (aOR: 4.675, 95% CI: 1.548–14.112, p-value = 0.006). Additionally, practitioners expressed positive attitudes but low confidence, with only 33.3% (n = 74) feeling confident in implementation. The confidence levels of male practitioners surpassed those of female practitioners (p-value = 0.037), and practitioners from community health centers (CHCs) exhibited higher confidence compared to their counterparts in private hospitals (p-value = 0.008). Joint physician-pharmacist clinics (36.8%, n = 82) through collaboration with medical institutions (52.0%, n = 116) emerged as the favored modality. Daily sessions were preferred (38.5%, n = 86), and both registration and pharmacy service fees were considered appropriate for payment (42.2%, n = 94). The primary challenge identified was high outpatient workload (30.9%, n = 69). Conclusions: Although primary healthcare practitioners held positive attitudes towards pharmacist clinics, limited knowledge, low confidence, and high workload contributed to the scarcity of their implementation. Practitioners with diverse sociodemographic characteristics, such as education, age, and institution, showed varying perceptions and practices regarding pharmacist clinics. [ABSTRACT FROM AUTHOR]

Background: Person-centred planning refers to a model of care in which programs and services are developed in collaboration with persons receiving care (i.e., persons-supported) and tailored to their unique needs and goals. In recent decades, governments around the world have enacted policies requiring community-care agencies to adopt an individualized or person-centred approach to service delivery. Although regional mandates provide a framework for directing care, it is unclear how this guidance is implemented in practice given the diversity and range of organizations within the sector. This study aims to address a gap in the literature by describing how person-centred care plans are implemented in community-care organizations. Methods: We conducted semi-structured interviews with administrators from community-care organizations in Ontario, Canada. We asked participants about their organization's approach to developing and updating person-centred care plans, including relevant supports and barriers. We analyzed the data thematically using a pragmatic, qualitative, descriptive approach. Results: We interviewed administrators from 12 community-care organizations. We identified three overarching categories or processes related to organizational characteristics and person-centred planning: (1) organizational context, (2) organizational culture, and (3) the design and delivery of person-centred care plans. The context of care and the types of services offered by the organization were directly informed by the needs and characteristics of the population served. The culture of the organization (e.g., their values, attitudes and beliefs surrounding persons-supported) was a key influence in the development and implementation of person-centred care plans. Participants described the person-centred planning process as being iterative and collaborative, involving initial and continued consultations with persons-supported and their close family and friends, while also citing implementation challenges in cases where persons had difficulty communicating, and in cases where they preferred not to have a formal plan in place. Conclusions: The person-centred planning process is largely informed by organizational context and culture. There are ongoing challenges in the implementation of person-centred care plans, highlighting a gap between policy and practice and suggesting a need for comprehensive guidance and enhanced adaptability in current regulations. Policymakers, administrators, and service providers can leverage these insights to refine policies, advocating for inclusive, flexible approaches that better align with diverse community needs. [ABSTRACT FROM AUTHOR]

Background: Intellectual disability services have and continue to experience changes in service provision. This has an implication for leadership in practice as the quality of leadership has a direct influence on staff practice and care provided. Aim: To design, deliver, and evaluate a leadership programme for nurse and social care managers in Ireland. Design: An accredited programme was designed based on evidence from literature, practice, and national expertise. A cross-sectional survey was used to collect information on the attitudes and behaviour of participants before commencing and after completing the programme. Data from the questionnaires were analysed using SPSS and open-ended questions were analysed using content analysis. Setting: Intellectual disability services. Participants: 102 participants completed the programme and survey. Methods: Pre-post survey and reported using the CROSS guidelines. Results: Participants' expectations were rated highly, and all items scored higher in the post-survey. Qualitative data was overall positive regarding opportunities for more time to work through each aspect of the programme. The key learning was through the forum day where participants shared their group projects. Conclusions: Overall, the programme was positively evaluated and through engaging with the programme participants' perceptions moved from seeing leadership as mostly task-oriented to realising that qualities such as good communication, person-centredness, advocacy, supporting, role modelling, and empowering are key to leadership. [ABSTRACT FROM AUTHOR]

Background: Approximately 1.3 billion people worldwide face barriers in accessing inclusive healthcare due to disabilities, leading to worse health outcomes, particularly in low and middle-income countries (LMIC). However, there is a lack of training of healthcare workers about disability, both globally and in Uganda. Objectives: To use mixed research methods to develop a comprehensive training program with standardisedelements for healthcare workers in Uganda, focusing on improving their knowledge, attitudes, and skills inproviding care for people with disabilities. Methods: The Medical Research Council (MRC) approach was employed to guide the development of the training intervention. We conducted an umbrella review to gather relevant literature on disability training for healthcare workers. Interviews were conducted with international experts to gain insights and perspectives on the topic. Additionally, interviews were undertaken with people with disabilities and healthcare workers in Uganda to understand their experiences and needs. A participatory workshop was organised involving key stakeholders, to collaboratively design the training material based on the findings from these data sources. Results: Eight review articles examined training programs for healthcare workers on disability. Training settings ranged from specialised clinical settings to non-clinical settings, and the duration and evaluation methods of the training varied widely. Lectures and didactic methods were commonly used, often combined with other approaches such as case studies and simulations. The impact of the training was assessed through healthcare worker reports on attitudes, knowledge, and self-efficacy. Interviews emphasised the importance of involving people with disabilities in the training and improving communication and understanding between healthcare providers and people with disabilities. Five themes for a training on disability for healthcare workers were generated through the workshop, including responsibilities and rights, communication, informed consent, accommodation, and referral and connection, which were used to guide the development of the curriculum, training materials and training approach. Conclusion: This study presents a novel approach to develop a training program that aims to enhance healthcare services for people with disabilities in Uganda. The findings offer practical insights for the development of similar programs in LMICs. The effectiveness of the training program will be evaluated through a pilot test, and policy support is crucial for its successful implementation at scale. [ABSTRACT FROM AUTHOR]

Background People with intellectual disability are at risk of poor hospital experiences and outcomes. The aims were to conduct a content and quality review of research into the acute hospital experiences of both people with intellectual disabilities and their carers, and to identify research gaps. Method A systematic search was conducted of primary research between 2009 and 2013 that addressed the experiences of the target group in general acute care hospitals. Quality appraisal tools yielded scores for quantitative and qualitative studies, and over-arching themes across studies were sought. Results Sixteen studies met inclusion criteria. Quality scores were 6/8 for a survey, and 2/11-9/11 (mean =5.25) for qualitative studies/ components. Content analysis revealed seven overarching themes covering individuals' fear of hospital encounters, carer responsibilities, and problems with delivery of care in hospitals including staff knowledge, skills and attitudes. Conclusions Our review of eligible papers revealed that despite 20 years of research and government initiatives, people with intellectual disability continue to have poor hospital experiences. The need for research to identify and investigate care at specific points of encounter across a hospital journey (such as admission, diagnostic testing, placement on a ward, and discharge) as well as to include people with a diversity of disabilities is discussed in terms of potential to influence policy and practice across health and disability sectors. [ABSTRACT FROM AUTHOR]

Abstract 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.

Background: This study aimed to investigate the utilization of preventive health services in the adults with intellectual disabilities from the nationwide database.Methods: The research method of this study is secondary data analysis. The data was obtained from three nationwide databases from 2006 to 2008. This study employed descriptive statistics to analyze the use and rate of preventive health services by intellectual disabled adults. Chi-square test was used to determine the relationship between the utilization of preventive health services and these variables. Multivariate logistic regression analysis was used to explore the factors that affect intellectual disabled adults' use of preventive health services.Results: Our findings indicated 16.65% of people with intellectual disabilities aged over 40 years used the preventive health services. Females were more frequent users than males (18.27% vs. 15.21%, p <0.001). The utilization rate decreased with increasing severity of intellectual disabilities. The utilization was lowest (13.83%) for those with very severe disability, whereas that was the highest (19.38%) for those with mild severity. The factors significantly influencing utilization of the services included gender, age, and marital status, urbanization of resident areas, monthly payroll, low-income household status, catastrophic illnesses status and relevant chronic diseases and severity of disability.Conclusions: Although Taiwan's Health Promotion Administration (HPA) has provided free preventive health services for more than 15 years, people with intellectual disabilities using preventive health care tend to be low. Demographics, economic conditions, health status, relevant chronic diseases, environmental factor, and severity of disability are the main factors influencing the use of preventive healthcare. According to the present findings, it is recommended that the government should increase the reimbursement of the medical staff performing health examinations for the persons with intellectual disabilities. It is also suggested to conduct media publicity and education to the public and the nursing facilities for the utilization of adult preventive health services. [ABSTRACT FROM AUTHOR]

Background: People with disabilities, who require numerous healthcare services, are vulnerable to unmet healthcare needs. This study aimed to investigate and identify the factors that influence unmet healthcare needs among people with disabilities and to compare these factors before and after the COVID-19 pandemic in South Korea. Methods: A propensity score matching analysis was conducted using two datasets from the National Survey of Disabled Persons collected in 2017 and 2020. The participants were matched based on variables known to influence healthcare utilization. Based on the Andersen model, logistic regression was performed to analyze the key characteristics of the factors associated with unmet healthcare needs, including predisposing, enabling, and need factors. Results: Propensity score matching resulted in the inclusion of 1,884 participants in each group: an experimental group and control group. Before COVID-19, factors associated with unmet healthcare needs included sex, age, marital status, and education level (predisposing factors), instrumental activities of daily living dependency, satisfaction with medical staff's understanding of disability, satisfaction with medical institutional facilities and equipment (enabling factors), subjective health status, and depressive symptoms (need factors). After COVID-19, factors included physical disability, instrumental activities of daily living dependency, and discrimination (enabling factors), and subjective health status, chronic diseases, depressive symptoms, and regular medical care (need factors). No significant predisposing factors affecting unmet healthcare needs were identified after COVID-19. Conclusions: This study compared the factors affecting unmet healthcare needs among people with disabilities before and after COVID-19. Recognizing the different factors associated with unmet healthcare needs before and after COVID-19, (e.g., sex, type of disability, satisfaction with medical staff's understanding of disabilities, medical institutional facilities and equipment considering the disabled, discrimination, chronic diseases, and regular medical care) may help governments and policymakers establish strategies to reduce and prevent unmet healthcare needs during and a future crisis. [ABSTRACT FROM AUTHOR]

Background: Relocations within and between nursing homes often induce stress, anxiety, and depression in residents and cause additional workload for and burnout in staff. To prevent this, many nursing homes deploy pre-transition initiatives, bridging initiatives, and post-transition initiatives to support residents and staff during the relocation process. As little is known about these initiatives, this study aims to explore the pre-relocation, bridging and post-relocation initiatives used for relocations within and between nursing homes. Methods: In seven Dutch nursing homes, eight focus groups were conducted with two to six participants (N = 37) who were actively involved in relocation processes in different roles (i.e., managers, healthcare professionals, support staff, client council members, residents and family). The focus groups were conducted based on a predefined topic list and lasted approximately 60 min. The transcripts were recorded, transcribed verbatim and analysed using thematic coding. Results: Nursing homes had to be inventive in developing relocation initiatives as neither shared guidelines nor knowledge exchange on this topic were available. A total of thirty-seven relocation initiatives were identified in these seven nursing homes. Nineteen pre-relocation initiatives were identified, of which eight emphasized information and engagement, three highlighted training and practice and eight stressed orientation and visualization. Seven bridging initiatives were identified, of which four emphasized coordination and continuity and three highlighted entertainment and celebration. Eleven post-relocation initiatives were identified, of which seven emphasized evaluation and troubleshooting and four highlighted change and adjustment. Conclusion: The identified relocation initiatives were developed unassisted by nursing homes, due to a lack of shared guidelines, knowledge exchange and mutual learning on this topic. Therefore, it may be expedient and more effective to develop general guidelines for relocations within and between nursing homes in collaboration with nursing homes. [ABSTRACT FROM AUTHOR]

Background: One in five children with an intellectual disability in the UK display behaviours that challenge. Despite associated impacts on the children themselves, their families, and services, little research has been published about how best to design, organise, and deliver health and care services to these children. The purpose of this study was to describe how services are structured and organised ("service models") in England for community-based health and care services for children with intellectual disability who display behaviours that challenge. Methods: Survey data about services were collected from 161 eligible community-based services in England. Staff from 60 of these services were also interviewed. A combination of latent class and descriptive analysis, coupled with consultation with family carers and professionals was used to identify and describe groupings of similar services (i.e., "service models"). Results: The latent class analysis, completed as a first step in the process, supported a distinction between specialist services and non-specialist services for children who display behaviours that challenge. Planned descriptive analyses incorporating additional study variables were undertaken to further refine the service models. Five service models were identified: Child and Adolescent Mental Health Services (CAMHS) (n = 69 services), Intellectual Disability CAMHS (n = 28 services), Children and Young People Disability services (n = 25 services), Specialist services for children who display behaviours that challenge (n = 27 services), and broader age range services for children and/or adolescents and adults (n= 12 services). Conclusions: Our analysis led to a typology of five service models for community health and care services for children with intellectual disabilities and behaviours that challenge in England. Identification of a typology of service models is a first step in building evidence about the best provision of services for children with intellectual disabilities who display behaviours that challenge. The methods used in the current study may be useful in research developing service typologies in other specialist fields of health and care. Study registration: Trial Registration: Current Controlled Trials ISRCTN88920546, Date assigned 05/07/2022. [ABSTRACT FROM AUTHOR]

Background: Quality health services build communities' and patients' trust in health care. It enhances the acceptability of services and increases health service coverage. Quality primary health care is imperative for universal health coverage through expanding health institutions and increasing skilled health professionals to deliver services near to people. Evidence on the quality of health system inputs, interactions between health personnel and clients, and outcomes of health care interventions is necessary. This review summarised indicators, successes, and challenges of the quality of primary health care services. Methods: We used the preferred reporting items for systematic reviews and meta-analysis extensions for scoping reviews to guide the article selection process. A systematic search of literature from PubMed, Web of Science, Excerpta Medica dataBASE (EMBASE), Scopus, and Google Scholar was conducted on August 23, 2022, but the preliminary search was begun on July 5, 2022. The Donabedian's quality of care framework, consisting of structure, process and outcomes, was used to operationalise and synthesise the findings on the quality of primary health care. Results: Human resources for health, law and policy, infrastructure and facilities, and resources were the common structure indicators. Diagnosis (health assessment and/or laboratory tests) and management (health information, education, and treatment) procedures were the process indicators. Clinical outcomes (cure, mortality, treatment completion), behaviour change, and satisfaction were the common indicators of outcome. Lower cause-specific mortality and a lower rate of hospitalisation in high-income countries were successes, while high mortality due to tuberculosis and the geographical disparity in quality care were challenges in developing countries. There also exist challenges in developed countries (e.g., poor quality mental health care due to a high admission rate). Shortage of health workers was a challenge both in developed and developing countries. Conclusions: Quality of care indicators varied according to the health care problems, which resulted in a disparity in the successes and challenges across countries around the world. Initiatives to improve the quality of primary health care services should ensure the availability of adequate health care providers, equipped health care facilities, appropriate financing mechanisms, enhance compliance with health policy and laws, as well as community and client participation. Additionally, each country should be proactive in monitoring and evaluation of performance indicators in each dimension (structure, process, and outcome) of quality of primary health care services. [ABSTRACT FROM AUTHOR]

Background: Patient engagement is seen as a necessary component in achieving the triple aim of improved population health, improved experience of care, and lower per capita health care costs. While there has been a substantial increase in the number of tools and patient-centered initiatives designed to help patients participate in health decisions, there remains a limited understanding of engagement from the perspective of patients and a lack of measures designed to capture the multi-faceted nature of the concept. Methods: Development of a concept map of patient engagement followed a five-step modified Group Concept Mapping (GCM) methodology of preparation, generation, structuring, analysis and interpretation. We engaged a Project Advisory Committee at each step, along with three rounds of survey collection from clinicians and patients for element generation (272 clinicians, 61 patients), statement sorting (30 clinicians, 15 patients), and ranking and rating of statements (159 clinicians, 67 patients). The survey of three separate samples, as opposed to focus groups of 'experts,' was an intentional decision to gain a broad perspective about the concept of patient engagement. We conducted the structure and analysis steps within the groupwisdom concept mapping software. Results: The final concept map comprised 47 elements organized into 5 clusters: Relationship with Provider, Patient Attitudes and Behaviors, Access, Internal Resources and External Resources. There was considerable agreement in the way elements in each cluster were rated by patients and clinicians. An analysis of the importance of the constitutive elements of patient engagement relative to their addressability highlighted actionable items in the domain of Relationship with Provider, aimed at building trust and enabling patients to ask questions. At the same time, the analysis also identified elements traditionally considered barriers to engagement, like personal access to the internet and the patient's level of digital literacy, as difficult to address by the healthcare system, but also relatively less important for patients. Conclusions: Through our GCM approach, incorporating perspectives of both patients and clinicians, we identified items that can be used to assess patient engagement efforts by healthcare systems. As a result, our study offers specific insight into areas that can be targeted for intervention by healthcare systems to improve patient engagement. [ABSTRACT FROM AUTHOR]

Background: Numerous forces drive the evolution and need for transformation of long-term care services. Decision-makers across the globe are searching for models to redesign long-term care to become more responsive to changing health and care needs. Yet, knowledge of different care models unfolding in the long-term care service landscape is limited. The objective of this article is twofold: 1) to identify and characterise models of care in Norwegian municipal long-term care services based on four different modes of service delivery: Specialised municipal services, Assistive technology, Planning and coordination, and Health Promotion and Activity, and 2) to analyse whether the identified care models vary with regard to municipal characteristics, more specifically 'population size' and 'income'. Methods: We adopted a cross-sectional approach and used data from a web-based survey conducted in 2019 to identify and characterize models of care in Norwegian long-term care services, based on four modes of service delivery. The questionnaire was developed through a comprehensive review of national healthcare policy documents and previous research and amended in collaboration with a user panel. A set of questions from the questionnaire were used to create four modes of service delivery. Hierarchical cluster analysis was used to cluster the municipalities based on the mean scores of the modes to identify care models. Results: In total, 277 municipalities (response rate 66%) completed the survey. The four modes made it possible to identify four care models that differ on the level of Specialised municipal services, Assistive technology, Planning and coordination, and Health Promotion and Activity. Additionally, the models differed regarding municipal population size (p < 0.001) and income (p = 0.006). Conclusions: We put forward a theoretical description of the variety of ways long-term care services are provided, offering a way of simplifying complex information which can assist care providers and policymakers in analysing and monitoring their own service provision and making informed decisions. This is important to the development of services for current and future care needs. [ABSTRACT FROM AUTHOR]

Background: Roughly 40% of those with intellectual/developmental disabilities (IDD) have mental health needs, twice the national average. Unfortunately, outpatient mental health services are often inaccessible, increasing reliance on hospital-based services. While telemental health services hold potential to address this gap, little is known about the effectiveness of telemental health for the diversity of persons with IDD, especially as it relates to crisis prevention and intervention services. Accordingly, the aims of this study are to: (1) compare telemental health versus in-person crisis prevention and intervention services among people with IDD; and (2) understand if outcomes vary across subpopulations, in order to identify potential disparities. Methods: This study will take place within START (Systemic, Therapeutic, Assessment, Resources, and Treatment), a national evidence-based model of mental health crisis prevention and intervention for people with IDD. A total of 500 youth and adults, located across nine states, will be randomized 1:1 to telemental health vs. in-person. Participant inclusion criteria are ages 12–45 years, living in a family setting, and newly enrolled (within 90 days) to START. Outcomes will be assessed, using a non-inferiority design, for up to 1 year or until discharge. The intervention is comprised of four components: (1) outreach; (2) consultation/coping skills; (3) intake/assessment; and, (4) 24-hour crisis response. The in-person condition will deliver all components in-person. The telemental health condition will deliver components 1 & 2, via telephonic or other communication technology, and components 3 & 4 in-person. Outcomes include mental health crisis contacts, mental health symptoms, emergency psychiatric service use, perceived quality of mental healthcare, and time to discharge. Discussion: To our knowledge, this will be the first trial of a telemental health crisis program for the IDD population. The study will be executed by an interdisciplinary team of experts that includes persons with lived experience of disability. Understanding the benefits of specific telemental health methods has important implications to the design of interventions. This telemental health study offers promise to address disparities in access to mental health care for people with IDD across diverse racial, ethnic, linguistic, and cultural groups. Trial Registration: Clinicaltrials.gov (#NCT05336955; Registration Date: 4/20/2022). [ABSTRACT FROM AUTHOR]

Background: WHO recommends repeated measurement of patient safety climate in health care and to support monitoring an 11 item questionnaire on sustainable safety engagement (HSE) has been developed by the Swedish Association of Local Authorities and Regions. This study aimed to validate the psychometric properties of the HSE. Methods: Survey responses (n = 761) from a specialist care provider organization in Sweden was used to evaluate psychometric properties of the HSE 11-item questionnaire. A Rasch model analysis was applied in a stepwise process to evaluate evidence of validity and precision/reliability in relation to rating scale functioning, internal structure, response processes, and precision in estimates. Results: Rating scales met the criteria for monotonical advancement and fit. Local independence was demonstrated for all HSE items. The first latent variable explained 52.2% of the variance. The first ten items demonstrated good fit to the Rasch model and were included in the further analysis and calculation of an index measure based on the raw scores. Less than 5% of the respondents demonstrated low person goodness-of-fit. Person separation index > 2. The flooring effect was negligible and the ceiling effect 5.7%. No differential item functioning was shown regarding gender, time of employment, role within organization or employee net promotor scores. The correlation coefficient between the HSE mean value index and the Rasch-generated unidimensional measures of the HSE 10-item scale was r =.95 (p <.01). Conclusions: This study shows that an eleven-item questionnaire can be used to measure a common dimension of staff perceptions on patient safety. The responses can be used to calculate an index that enables benchmarking and identification of at least three different levels of patient safety climate. This study explores a single point in time, but further studies may support the use of the instrument to follow development of the patient safety climate over time by repeated measurement. [ABSTRACT FROM AUTHOR]

Background: In several countries, district medical officers (DMOs) are public health experts with duties including infection control measures. The Norwegian DMOs have been key actors in the local handling of the COVID-19 pandemic. Methods: The aim of the study was to explore the ethical challenges experienced by Norwegian DMOs during the COVID-19 pandemic, and how the DMOs have handled these challenges. 15 in-depth individual research interviews were performed and analyzed with a manifest approach. Results: Norwegian DMOs have had to handle a large range of significant ethical problems during the COVID-19 pandemic. Often, a common denominator has been the need to balance burdens of the contagion control measures for different individuals and groups. In another large set of issues, the challenge was to achieve a balance between safety understood as effective contagion prevention on the one hand, and freedom, autonomy and quality of life for the same individuals on the other. Conclusions: The DMOs have a central role in the municipality's handling of the pandemic, and they wield significant influence. Thus, there is a need for support in decision-making, both from national authorities and regulations, and from discussions with colleagues. [ABSTRACT FROM AUTHOR]

Background: Disruptions to healthcare services during the COVID-19 pandemic are well-recognised problems. However, a dearth of research exists on disabled people's experiences with accessing these services. A scoping review was undertaken to identify and explore research on the experience of disabled people in accessing healthcare services between 2020 and 6 February 2023. Methods: PubMed, Web of Science, CINAHL, and OVID were employed to search for research that included the voice of disabled people, or their parents or caregivers. Over two distinct phases, a total of 2,201 articles were reviewed according to article titles, keywords, and abstracts. Eighty-one studies were identified that met the inclusion criteria; these were reviewed in full. Results: Eighteen studies specifically described the experiences of accessing healthcare or disability services, and sixty-three raised healthcare challenges as a secondary consideration. Many disabled people struggled to access healthcare services and felt they were invisible; as a result, individuals' mental health was negatively affected. Disabled people with compounding vulnerabilities were at the most risk of experiencing a lack of healthcare access. Conclusions: There is an urgent need for research and policy that is responsive to disabled people's access to healthcare during the pandemic; currently many health policies are 'disability-blind' and exclude these members of the global community. Furthermore, to assist in creating disability-responsive research, funding needs to prioritise researchers within the disabled community. [ABSTRACT FROM AUTHOR]

Background: The limited health and social care infrastructure that existed in the 1970s in Cambodia was destroyed due to the Khmer Rouge. Mental Health service infrastructures have developed in Cambodia in the last twenty five years, however, they have been shaped significantly by very limited funding being made available for human resources, support services and research. The lack of research on Cambodia's mental health systems and services is a significant barrier to the development of evidence-based mental health policies and practice. In order to address this barrier, effective research and development strategies are needed in Cambodia, which are based on locally well-informed research priorities. There are many possibilities for mental health research in LMIC countries such as Cambodia, therefore focused research priorities in these areas are needed to guide future research investment. This paper is the result of the development of international collaborative workshops, which focused on service mapping and research priority setting in the field of mental health in Cambodia. Methods: A nominal group technique was used to gather ideas and insights from a range of key mental health service stakeholders in Cambodia. Results: The key issues in service provisions for people with mental health issues and disorders, the interventions and programmes of support available, and currently needed, were identified. This paper also identifies five key mental health research priority areas which could form the basis for effective mental health research and development strategies in Cambodia. Conclusion: There is a clear need for the Cambodian government to devise a clear policy framework for health research. This framework could focus on the five research domains identified in this paper and could be incorporated within its National Health Strategic plans. The implementation of this approach would likely lead to the development of an evidence base which would allow the development of effective and sustainable strategies for mental health problem prevention and intervention. This would also contribute to promote the Cambodian government's capacity to take the deliberate, concrete, and targeted steps necessary to address the complex mental health needs of its population. [ABSTRACT FROM AUTHOR]

Background: Directly-funded home care (DF) provides government funds to people who need assistance with the activities of daily living, allowing them to arrange their own services. As programs expand globally, many allow DF clients to hire home care agencies to organize their services rather than finding their own workers. In Canada, half of the DF home care programs allow users to purchase agency services. The goal of this research is to describe the role of agency providers in DF home care in Canada and consider potential equity implications for service access from the perspectives of clients and families. Methods: Framed with intersectionality, the study included online focus groups with families and clients (n = 56) in the two Canadian provinces of Alberta and Manitoba between June 2021-April 2022. All transcripts underwent qualitative thematic analysis using open and axial coding techniques. Each transcript was analyzed by two of three possible independent coders using Dedoose qualitative analysis software. Results: The article presents five thematic findings. First, the focus groups document high rates of satisfaction with the care regardless of whether the client uses agency providers. Second, agency providers mediate some of the administrative barriers and emotional strain of using DF home care, and this is especially important for family caregivers who are working or have additional care responsibilities. Third, there are out-of-pocket expenses reported by most participants, with agency clients describing administrative fees despite lower pay for the frontline care workers. Fourth, agencies are not generally effective for linguistic and/or cultural matching between workers and families. Finally, we find that DF care programs cannot compensate for a limited informal support network. Conclusions: Clients and families often intentionally choose DF home care after negative experiences with other public service options, yet the results suggest that in some Canadian contexts, DF home care is a privilege only afforded to some. Given the growing inequalities that exist in Canadian society, all public home care options must be open to all who need it, irrespective of ability to pay, degree of social support, or competence in the English language. [ABSTRACT FROM AUTHOR]

Background: To inform healthcare planning and resourcing, population-level information is required on the use of health services among young people with a mental disorder. This study aims to identify the health service use associated with mental disorders among young people using a population-level matched cohort.Method: A population-based matched case-comparison retrospective cohort study of young people aged ≤ 18 years hospitalised for a mental disorder during 2005-2018 in New South Wales, Australia was conducted using linked birth, health, and mortality records. The comparison cohort was matched on age, sex and residential postcode. Adjusted rate ratios (ARR) were calculated for key demographics and mental disorder type by sex.Results: Emergency department visits, hospital admissions and ambulatory mental health service contacts were all higher for males and females with a mental disorder than matched peers. Further hospitalisation risk was over 10-fold higher for males with psychotic (ARR 13.69; 95%CI 8.95-20.94) and anxiety (ARR 11.44; 95%CI 8.70-15.04) disorders, and for both males and females with cognitive and behavioural delays (ARR 10.79; 95%CI 9.30-12.53 and ARR 14.62; 95%CI 11.20-19.08, respectively), intellectual disability (ARR 10.47; 95%CI 8.04-13.64 and ARR 11.35; 95%CI 7.83-16.45, respectively), and mood disorders (ARR 10.23; 95%CI 8.17-12.80 and ARR 10.12; 95%CI 8.58-11.93, respectively) compared to peers.Conclusion: The high healthcare utilisation of young people with mental disorder supports the need for the development of community and hospital-based services that both prevent unnecessary hospital admissions in childhood and adolescence that can potentially reduce the burden and loss arising from mental disorders in adult life. [ABSTRACT FROM AUTHOR]

Background: There is a consensus among healthcare providers, academics, and policy-makers that spiraling demand and diminishing resources are threatening the sustainability of the current healthcare system. Different telemedicine services are seen as potential solutions to the current challenges in healthcare. This paper aims to identify how distance monitoring services rendered for patients with chronic conditions can affect the escalating demand for healthcare. First, we identify how distance monitoring service changes the care delivery process using the lens of service cocreation. Next, we analyze how these changes can impact healthcare demand using the literature on demand and capacity management. Method: In this qualitative study, we explore a distance monitoring service in a primary healthcare setting in Norway. We collected primary data from nurses and general physicians using the semi-structured interview technique. We used secondary patient data collected from a study conducted to evaluate the distance monitoring project. The deductive content analysis method was used to analyze the data. Result: This study shows that the application of distance monitoring services changes the care delivery process by creating new activities, new channels for interaction, and new roles for patients, general physicians, and nurses. We define patients' roles as proactive providers of health information, general physicians' roles as patient selectors, and nurses' roles as technical coordinators, data workers, and empathetic listeners. Thus, the co-creation aspect of the service becomes more prominent demonstrating potential for better management of healthcare demand. However, these changes also render the management of demand and resources more complex. To reduce the complexities, we propose three mechanisms: foreseeing and managing new roles, developing capabilities, and adopting a system-wide perspective. Conclusion: The main contribution of the paper is that it demonstrates that, although distance monitoring services have the potential to have a positive impact on healthcare demand management, in the absence of adequate managerial mechanisms, they can also adversely affect healthcare demand management. This study provides a means for practitioners to reflect upon and refine the decisions that they make regarding telemedicine deployment and resource planning for delivering care. [ABSTRACT FROM AUTHOR]