Improving diabetes care for people with intellectual disabilities: a qualitative study exploring the perceptions and experiences of professionals in diabetes and intellectual disability services.

The provision of health and social services for people with intellectual and developmental disabilities has historically followed a different path in Asian countries than in Western countries. The most important of these paths is that there was no institutionalization in the history of Taiwan in the last 150 years. However, residential services for people with intellectual and developmental disabilities in Taiwan are available, but not on a large scale. One reason is that families are concerned about stigmatization if they have a family member with intellectual disabilities. Such families are not likely to seek outside services, choosing instead to have the immediate family or relatives provide the care. The other reason has to do with the fact that during the past 200–300 years, Chinese society has not been influenced by social Darwinism, which contributed to social separation and the isolation of people with intellectual disabilities from the rest of the society. This unique history has not been recognized by most Western researchers. Because Asian culture is both rich and highly diversified, it is nearly impossible to discuss in a single chapter the health and social services available for people with intellectual disability. Asia has not been a mainstream focus for Western researchers and most of the published Western research work on intellectual disability services in Asian countries has assumed a Western perspective and has ignored the characteristics of these services that are unique to Asia. In the last two to three decades, there has been little published research about the situation of people with intellectual or developmental disabilities in Asian countries, and only recently a few reports have appeared in Western journals. In this chapter, I use the case of Taiwan to open a window for understanding the status of health and social services for people with intellectual disability in Asia. Taiwan stands out partly because in the last 15 years many articles about intellectual and developmental disabilities have been published in Western journals, which provides material for comparison. The other reason is that Taiwan has the most advanced democratic system of any country influenced by Chinese culture, and disability-rights advocacy groups in Taiwan have actively participated in various policy-making initiatives; this has not been true in China or Hong Kong. From a disability-rights viewpoint, the accumulating research results from Taiwan offer Western countries an opportunity to learn about the health and social services available to people with intellectual disability in Taiwan and to see how they compare to the services available in the West.

Trauma and its sequelae is recognised as a major morbidity factor in people with intellectual disabilities, however, a lack of inquiry into how health care professionals address trauma in this adult population exists. To explore specialist intellectual disability practitioners perspectives on current health provision and developments to address trauma. Twenty-five qualitative interviews were conducted with practitioners across 6 health service areas in the UK. Data were analysed using thematic content analysis. Seven central themes emerged: (a) unmasked trauma; (b) trauma informed care; (c) person-centred care and support; (d) multi-disciplinary working; (e) reasonable adjustments; (f) barriers to treatment and (g) awareness, training and education. Trauma-informed care and multi-disciplinary working are essential components for future service development. Advances in the evidence-base for effective psychological interventions for PTSD and training and education of health care staff are needed in order to improve service provision amongst this population.

To describe parents' perspectives on reasonable adjustments in acute healthcare for people with intellectual disability (ID). People with ID are vulnerable in terms of their health needs and marginalized when accessing and utilizing acute healthcare services. Reasonable adjustments are positive measures that can help alleviate health disparities. However, despite significant research advocating their use, evidence of implementation of reasonable adjustments in acute healthcare practice is limited. A qualitative descriptive study. Qualitative semi-structured interviews were conducted with six parents of children with ID, who had accessed and used acute healthcare services. The interviews were conducted between January and May 2022, audio-recordings were transcribed and thematically analysed. Parents described limited or no experiences of reasonable adjustments when accessing or utilizing acute healthcare services for their children. The findings are captured in three themes; describing the reality, understanding the impact and signposting the future. The findings highlight a lack of implementation of reasonable adjustments in acute healthcare which negatively impacts the experience of all stakeholders. There is a pressing need for reasonable adjustments to be implemented at a strategic level across acute healthcare services, so that people with ID and their families can access person-centred acute healthcare when needed. The research findings will inform researchers interested in reasonable adjustments and implementation research, and those interested in advocating for the rights of people with ID. This study adhered to the Equator research reporting checklist: Consolidated criteria for reporting qualitative research: a 32-item checklist for interviews and focus groups. A parent of a child with an ID was part of the research team informing the design, data collection, data analysis and write-up of this article.

ObjectiveTo identify the factors that promote and compromise the implementation of reasonably adjusted healthcare services for patients with intellectual disabilities in acute National Health Service (NHS) hospitals.DesignA mixed-methods study involving...

ABSTRACTAimTo explore the factors influencing the implementation of reasonable adjustments in hospitals for people with intellectual disability: using a realist lens.DesignA qualitative study using a realist lens.MethodsData collection involved one focus group interview and three semi‐structured interviews with healthcare professionals working in hospital or community settings in September 2023. Data were analysed using qualitative content analysis and findings were mapped to the Context and Implementation of Complex Interventions (CICI) framework across the dimension's context, implementation and setting.ResultsHealthcare professionals support the provision of reasonable adjustments in acute hospitals as a person‐centred approach to caring for people with intellectual disability. While reasonable adjustments are evident in practice, they are mostly individual‐level cases with little evidence of strategic system‐level implementation. The factors influencing the implementation of reasonable adjustments in practice were conceptualised using the CICI framework. Context factors spanned the domains of epidemiological (e.g., ageing population), socio‐cultural (e.g., historical healthcare), political (e.g., lack of integrated care pathways) and ethical (e.g., provision of person‐centred care). Implementation factors spanned the domains of strategies (e.g., leadership strategies), agents (e.g., liaison and advocacy roles) and outcomes (e.g., individual‐level reasonable adjustments). The setting for the complex intervention was the acute hospital. System‐level indicators for successful implementation include intellectual disability specific policies/procedures for integrated care pathways, education and awareness training for hospital staff, and leadership strategies such as the development of liaison nursing roles and the appropriate allocation of physical and human resources.ConclusionA radical change is needed where implementation of reasonable adjustments in acute hospitals are broadened beyond isolated individual‐level cases to system‐level healthcare. This research highlights the importance of exploring the integrated dimensions of context, implementation and setting in complex interventions such as reasonable adjustments and sets foundation for further implementation research in this area.ImpactReasonable adjustments at the system‐level within acute hospitals would promote person‐centred care and help address the inequities and health disparities experienced by people with intellectual disability. This research uses a realist lens to explore the factors influencing the implementation of reasonable adjustments in acute hospitals for people with intellectual disability. The factors influencing the implementation of reasonable adjustments in practice were conceptualised using the CICI framework across the dimensions of context (domains epidemiological, socio‐cultural, political and ethical), implementation (domains strategies, agents and outcomes) and setting. System‐level indicators for successful implementation include intellectual disability specific policies/procedures for integrated care pathways, education and awareness training for hospital staff, and leadership strategies such as the development of liaison nursing roles and the appropriate allocation of physical and human resources. This research highlights the importance of exploring the integrated dimensions of context, implementation and setting of complex interventions such as reasonable adjustments and sets a foundation for further implementation research in this area.Reporting MethodThis research adhered to the Equator research reporting guideline: standards for reporting qualitative research.Patient or Public ContributionA parent of a child with intellectual disability was involved in the conduct of this research, specifically in the design, data collection and preparation of the manuscript.

Perampanel-induced weight gain depends on level of intellectual disability and its serum concentration

People with intellectual disabilities are a high risk population for developing osteoporosis and fragility fractures, yet they experience barriers to accessing dual-energy x-ray absorptiometry (DXA) bone mineral density (BMD) screening and fracture assessment. Reasonable adjustments are a statutory requirement in the UK, but there is a paucity of evidence-based examples to assist their identification, implementation and evaluation. Thirty adults with intellectual disabilities underwent DXA BMD screening and fracture risk assessment. Reasonable adjustments were identified and implemented. The presence of osteopenia or osteoporosis was detected in 23 out of 29 (79%) participants. Osteoporosis professionals report that 17 of 18 reasonable adjustments identified and implemented are both important and easy to implement. Adults across all levels of intellectual disabilities can complete DXA BMD screening with reasonable adjustments. Widely implementing these reasonable adjustments would contribute to reducing inequalities in health care for adults with intellectual disabilities.

ObjectivesTo understand the views of qualified medical practitioners regarding “reasonable adjustments” and the quality of the care and treatment provided to adults with intellectual disabilities when admitted to acute hospitals as inpatients.MethodsSemi‐structured interviews took place with 14 medical practitioners, seven from each of two acute hospitals, with a thematic analysis of the resulting data.ResultsAll 14 medical practitioners reported problems in the diagnosis and treatment of patients with intellectual disabilities. Most participants attributed these difficulties to communication problems and/or behaviours that, in the context of a hospital ward, were non‐conforming. However, a minority reported that, because they were likely to have multiple comorbid health conditions, patients with intellectual disabilities were more complex. In addition, half of all these respondents reported making little use of “reasonable adjustments” introduced to improve the quality of the care received by this group of patients.ConclusionsMedical practitioners should make better use of the “reasonable adjustments” introduced in the UK to address inequities in care and treatment received by patients with intellectual disabilities. However, training should also focus on the biomedical complexities often presented by these men and women.

People with intellectual disability (ID) account for a large proportion of aggressive incidents in secure and forensic psychiatric services. Although the Historical, Clinical, Risk Management 20 (HCR-20) has good predictive validity in inpatient settings, it does not perform equally in all groups and there is little evidence for its efficacy in those with ID. A pseudo-prospective cohort study of the predictive efficacy of the HCR-20 for those with ID (n = 109) was conducted in a UK secure mental health setting using routinely collected risk data. Performance of the HCR-20 in the ID group was compared with a comparison group of adult inpatients without an ID (n = 504). Analysis controlled for potential covariates including security level, length of stay, gender and diagnosis. The HCR-20 total score was a significant predictor of any aggression and of physical aggression for both groups, although the area under the curve values did not reach the threshold for a large effect size. The clinical subscale performed significantly better in those without an ID compared with those with. The ID group had a greater number of relevant historical and risk management items. The clinicians' summary judgment significantly predicted both types of aggressive outcomes in the ID group, but did not predict either in those without an ID. This study demonstrates that, after controlling for a range of potential covariates, the HCR-20 is a significant predictor of inpatient aggression in people with an ID and performs as well as for a comparison group of mentally disordered individuals without ID. The potency of HCR-20 subscales and items varied between the ID and comparison groups suggesting important target areas for improved prediction and risk management interventions in those with ID.

Background: The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature. In response, more partnership practice in end-of-life care is proposed. Aim: This study aimed to develop a best practice model to guide and promote partnership practice between specialist palliative care and intellectual disability services. Design: A mixed methods research design involving two phases was used, underpinned by a conceptual model for partnership practice. Setting/participants: Phase 1 involved scoping end-of-life care to people with intellectual disability, based on self-completed questionnaires. In all, 47 of 66 (71.2%) services responded. In Phase 2, semi-structured interviews were undertaken with a purposive sample recruited of 30 health and social care professionals working in intellectual disability and palliative care services, who had provided palliative care to someone with intellectual disability. For both phases, data were collected from primary and secondary care in one region of the United Kingdom. Results: In Phase 1, examples of good practice were apparent. However, partnership practice was infrequent and unmet educational needs were identified. Four themes emerged from the interviews in Phase 2: challenges and issues in end-of-life care, sharing and learning, supporting and empowering and partnership in practice. Conclusion: Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.

This project, conducted during 2010 by a researcher working with a self-advocacy group, investigated the implementation of Annual Health Checks (AHCs) for people with intellectual disabilities in Oxfordshire, where only 26.1 percent of AHCs were completed in 2009-10 (national average 41 percent). AHCs were introduced in England in 2008 as a response to findings that people with intellectual disabilities have significantly worse health care than other groups. GP practices are financially incentivized to offer AHCs. This study found that slow progress in implementing AHCs was attributable to: uncertainty over who was eligible; limited awareness in general practices about the legal duty to make 'reasonable adjustments' to facilitate access; limited awareness of AHCs and their potential benefits amongst carers and adults with intellectual disabilities; and in some cases scepticism that AHCs were either necessary or beneficial. The article also explores the benefits of undertaking this project in partnership with a self-advocacy group.

To examine the compass and nature of relevant research and identify gaps in the current evidence in order to determine the priority of future research about breast cancer and intellectual disability (ID). A scoping study that comprised of a consultation exercise with a wide range of key stakeholders (n = 26) from one northern city (Sheffield) within the UK. This study identified numerous gaps in the current evidence base. It highlighted a dearth of research that focuses specifically on the information and support needs of women with IDs (and their carers) across the breast cancer patient pathway. Within the interviews, whilst 'reasonable adjustments' were being made and there was evidence of good practice, they were neither strategic nor systematic. Participants suggested that future research should focus on devising protocols to advise on the legal, ethical and clinical imperatives so that clinical governance in this area is assured. There remains a dearth of research or practice guidelines at every stage of the breast cancer care pathway for women with ID. This may arguably lead to late diagnosis, suboptimal treatment and management and overall survival rates for this group. Further research is needed to understand the specific information and support needs of both women with ID (and their formal and informal carers) through the breast care pathway and to identify appropriate protocols, strategies and interventions in order to address these.

Background Previous research has investigated how staff from National Health Service Substance Use Disorder (SUD) services feel about supporting people with intellectual disabilities but has not explored the third (voluntary) sector, usually the main support provider in Scotland for nondependent SUD. Methods A questionnaire sent to third sector alcohol support agencies explored: awareness of the needs of people with intellectual disabilities, awareness of other services who can support when working with this group, whether training/adaptations were made to improve accessibility and whether staff hold people with intellectual disabilities in the same regard as people without. Results Nineteen participants responded. Most knew what intellectual disabilities were and had supported people with intellectual disabilities. However, other findings suggested the need for more training/input with only 16% having been trained about intellectual disabilities by their organisation, a lack of awareness of potential support from intellectual disabilities services and limited knowledge about tailoring approaches to these people. Only 47% felt their services could adequately support this group. There was not strong evidence of a difference in regard towards people with an alcohol problem with intellectual disabilities compared with those without. Conclusions Improved joint working is needed between intellectual disability and alcohol services to support this group.

The prevalence of diabetes mellitus has been increasing in the past few decades. Mortality and morbidity have increased faster in low- and middle-income countries than in high-income countries. In Ethiopia it has been a practice to handle most diabetes mellitus patients in general and referral hospitals which in turn caused over burden in these hospitals. Besides, the possibility of implementing diabetic care service in primary health care facilities is not assessed in Ethiopia. The aim of this study was to decentralize and implement diabetic service in primary health care facilities in Tigray. The study was conducted in Tigray region, at Hagereselam primary hospital from September 2019 to September 2020. A pilot study which aimed to bring diabetes services to non-specialized health care facilities. Diabetic patients who were on follow up in tertiary hospital (Ayder Comprehensive Specialized Hospital) were moved to Hagereseam primary hospital voluntarily, which is the main study site. The data were collected by trained health professionals and the data collection tool was adapted and developed from national guideline and analysed through SPSS 21. Independent t-test and chi-square was applied to compare the outcomes among study participant groups. The mean and median Fasting Blood Sugar (FBS) level was 171mg/dl and 151.5 (IQR = 109.5-180.7) respectively. and the mean difference of FBS with randomly selected patients in a referral hospital was 3.55 (p = 0.8) which shows no significant difference. Mean systolic BP and haemoglobin A1c were 114.2 mmHg and 8.34% respectively. There is no significant difference in the diabetes service among the primary and tertiary hospital. Diabetes service can be decentralized to primary health care facilities without compromising the quality of diabetic care. Further large implementational study is necessary to overcome the problems in the decentralization of service delivery in diabetes service.

BackgroundThe hospital or health passport is widely acknowledged as a central element in making reasonable adjustments for patients with intellectual disabilities. Historically, the health passport has been used exclusively for patients with intellectual disabilities; however, it has wider applications for any patient requiring additional support. Commonly, it documents past medical history, communication needs and a person's means of expressing pain. There are, however, significant barriers to their use, meaning patients are unable to access adjustments to improve their experiences in a healthcare system that already marginalises and discriminates against people with intellectual disabilities. This umbrella review aims to establish whether the passport is an effective reasonable adjustment, identify barriers to its use and make recommendations to alleviate these barriers.MethodsDatabase and citation searches informed a synthesis of international evidence to address these aims. Following the removal of duplicates and screening, nine review papers originating from the United Kingdom, Australia and Ireland were identified for inclusion. Seven focus on the use of passports for patients with intellectual disabilities, one on the use of passports for autistic people, and one exploring the use of passports for patients with dementia.FindingsThe results demonstrated that the passports are effective in improving care for patients with intellectual disabilities. However, there are barriers to its routine use. We identified three main issues with the current use of the hospital passport. First, there is a need for greater managerial support to implement reasonable adjustments. Second, standardisation of the passports at a national level will make them more accessible to healthcare professionals and will ensure that information is not ‘buried’; the development of a standardised passport must involve consultation of patients, carers and staff to meet the needs of all stakeholders. Finally, education for all healthcare staff to raise awareness of the passport and ensure it is utilised appropriately will ultimately pave the way for positive, long‐lasting change.ConclusionsPassports can be an effective means of communicating reasonable adjustments. Addressing a lack of awareness of its utility, ensuring managerial commitment to implementing reasonable adjustments and making the passport accessible through a standardised format will empower patients to engage with their own care.