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Background: People with intellectual disability (ID) experience health inequity compared with the general population, a key contributing factor being disparities in social determinants of health. The enactment of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) provides a platform for the progression and promotion of health and other interconnected rights to address barriers to the highest attainable standard of health for this populace. Rights can be brought to life through advocacy efforts. This paper explores the meaning, perceptions and experiences of advocacy by family members and paid support workers of adults with ID and locates the findings within a health and human rights discourse. Methods: As part of a larger randomised controlled trial, 113 parents and 84 support workers of adults with ID completed a telephone interview that included open-ended questions about their understanding and experiences of advocacy. Thematic analysis was used to identify relevant themes. Results: Five key themes were identified. The first underscored how advocacy to "speak up" for the person with ID is integral to both parent and support worker roles. The second and third themes considered the contexts for advocacy efforts. Access to quality health care was a core concern, along with advocacy across other areas and sectors to address the person's wider psychosocial needs. The remaining themes highlighted the many dimensions to advocacy, including differences between parent and support worker views, with parental advocacy being an expression of "caring" and support workers motivated by a "duty of care" to protect the individual's "rights". Conclusion: Parent and support worker advocacy provides one means to address the social determinants of health and fulfilment of health rights of and for people with ID. Policy and practice in the context of governmental obligation under the CRPD should support advocacy and make health rights the reality not rhetoric for this group of men and women.

Background: Quality mental health care for adults with an intellectual disability (ID) depends upon the availability of appropriately trained and experienced psychiatrists. There have been few surveys of psychiatrists working with this population. Method: This Australian study obtained psychiatrists' attitudes to and perceptions of the mental health needs of adults with an ID. Training needs were also sought. The survey instrument used was a purposely designed, 28-item self-administered questionnaire featuring multiple-choice and open-ended questions. Results: The majority of psychiatrists expressed concerns about treatment of this group, describing unmet needs. A total of 75% considered that antipsychotics were overused to control aggression, and 34% of psychiatrists were reluctant to treat adults with an ID. In total, 85% agreed that mental health in ID should be offered as a training option for psychiatric registrars, and that specialized mental health services would provide a high standard of care for this population. Conclusion: Broad concerns are raised regarding pathways to mental health care for adults with an ID in Australia. An Australia-wide training strategy needs to be developed. Partnerships between mental health, disability and community services that serve the mental health needs of this population, should actively seek to engage psychiatrists.

Background: People with intellectual disability (ID) leaving institutions pass through a transition stage that makes them vulnerable to inadequate health care. They enter into community care under general practitioners (GPs) who are often untrained and inexperienced in their needs. Specifically designed health reviews may be of assistance to both them and their new GPs as they go through that phase. Methods: This research aimed to investigate the effectiveness of a specially designed health review, the comprehensive health assessment program (CHAP) health review, in a group of adults as they transitioned out of the care of the last institution for people with ID in Tasmania. There were 25 residents reviewed by their GPs. Results: The CHAP reviews picked up a number of health conditions and stimulated health promotion activities. Some of the findings were: a high number of abnormal Body Mass Indexes (1923), immunizations given (1323), vision impairment reported (223), mental health issues recorded (423) and skin abnormalities described (1723). There were 22 referrals made to other health professionals (Australian Hearing Service 4, dentists 3, optometrists 3, psychiatrists 2, neurologists 2, ophthalmologist 1, urologist 1, ultrasound 1, mammogram 1, family planning 1, physiotherapist 1, continence nurse 1 and respiratory physician 1). These were in addition to various requests for pathology. Conclusions The CHAP health review was effective in identifying a number of health issues in the population of people with ID as they transitioned out of institutional care into the general community.

The health status of people with intellectual disability (ID) is poor, yet very little research has been done on their health needs. There are several barriers to performing this research. The aim of our research was to examine the significant barriers encountered in recruiting adults with ID to participate in research. Our project was a randomized controlled trial aiming to improve health advocacy of people with ID. We approached many organizations to recruit participants and kept records of our results. Recruitment was very low for the first 4 months. Then we adopted two new recruitment strategies in-service telephone recruitment and meetings with prospective participants. We then monitored the subsequent recruitment rates. We also questioned participants about the difficulties they encountered when considering recruitment. Initial recruitment of participants yielded less than one-third of the expected number. Additional strategies implemented were partially successful. Significant barriers to recruitment included several sectoral issues and the challenges arising from the research process. While this population is a difficult one to reach for research, attempts to do so should not be abandoned, because the potential health benefits for this underserved group far outweigh the recruitment barriers experienced.

The Convention on the Rights of Persons with Disabilities has resulted in the involvement of high income countries in international development assistance to people with disabilities in low and middle income countries. Healthcare tools designed in high income countries and delivered in low and middle income countries may not be appropriate to the context of the lives of people with disabilities. We undertook a short qualitative study of participants' views of an Australian-designed comprehensive health assessment tool, with participation from a WHO-Collaborating non-government organisation in regional Philippines. We also examined the participants' perceptions of the barriers to healthcare for Filipinos with intellectual disabilities. Responses to the comprehensive health assessment tool were positive although participants agreed that both linguistic and cultural translation would enhance wider use of the tool. The barriers identified included poverty, family isolation, stigma and communication issues as preventing appropriate healthcare delivery to Filipinos with intellectual disability. Consideration must be given to the complexities of transference of healthcare resources to a low and middle income country context, as well as the systemic and cultural barriers to appropriate healthcare provision to people with disabilities. [ABSTRACT FROM AUTHOR]

Objective: In this paper we describe the design of a website based on written information about diabetes for people with intellectual disability and their care providers. Methods: The design process was collaborative with adults with intellectual disability, care providers, and professionals. The design followed the W3C Guidelines -- Accessibility Guidelines Double A. Results: Preliminary results are promising and the site is having about 850 pages accessed per month. Conclusion: The consultative and design processes used resulted in a unique and acceptable educational tool for people with intellectual disability who have diabetes and their care providers. [ABSTRACT FROM AUTHOR]

Disparities in the health status and care experienced by people with intellectual disabilities are increasingly being recognized. This special report presents the results of an international expert consensus workshop held under the auspices of the Health Issues Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities. The workshop's presentations were designed to identify domains of health disparity and identify examples of evidence-based or good practice and from them define statements and recommendations that would form the basis of an agenda for change. The report recognizes the breadth of domains that impact on disparity in health among people with intellectual disabilities by highlighting the importance of classification and the direct recognition of the increased morbidity and reduced life expectancy that these people experience. The report also considers population-based causes of disparity relating to social circumstances and inequalities in the provision of health and social services. Individual predispositions attributable to sex or genetic factors and potential solutions actualized through self-determination are discussed. [ABSTRACT FROM AUTHOR]

Abstract International research has demonstrated significant shortcomings in the health of adults with intellectual disability (ID). Because general practitioners (GPs) are the main providers of primary healthcare for this population, strategies to improve general practice care are an important aspect of rectifying these shortcomings. The present pilot study aimed to determine the effect of various interventions on health maintenance activities and to assess their acceptability to GPs, with a view to informing larger scale studies. The GPs were recruited through an earlier questionnaire-based postal survey. The GPs identified all their adult patients with ID, then obtained consent for participation from three patients randomly selected by the investigators. The GPs completed two self-evaluation forms and case note audits 12 months apart, read a synopsis of the relevant literature provided by the researchers, and completed a comprehensive health assessment (CHA) of their three patients. Forty-five GPs agreed to participate in the CHA programme (CHAP), and 15 completed the project. Thirty-eight patients completed the project. The number of patient–GP dyads who completed the project was too small to demonstrate statistically significant changes in health issues over time. The GPs found that the synopsis of the literature was the best intervention for increasing knowledge and was also the most practical to use in general practice. The CHAP was the intervention that prompted the most action from the GP which would not have been undertaken otherwise. The CHAP appeared to provide a superior review process compared to the other interventions used in the present study. The numbers of health maintenance activities found to be overdue and the number of health issues detected as a result of the process were considerable. The CHAP served as a communication tool and an educative instrument, providing a basis for future studies and strategies to improve the general practice care of adults with ID. [ABSTRACT FROM AUTHOR]

There has been a call to increase the quantity and quality of medical education in the area of intellectual disability in order to improve practitioners' provision of care and address the many poorly managed health issues in this population. The first part of this study involved determining the ideal knowledge, skills and attitudes that medical students should have at the end of their undergraduate training. Questionnaires were sent to experts to elucidate their opinions. Common themes were extracted and an ideal curriculum created. The second part of this study involved telephone interviewing of relevant staff at the ten medical schools in Australia to determine whether their teaching covered the knowledge, skills and attitudes outlined by the experts. Although some of the medical schools comprehensively covered all areas of teaching, half the medical schools displayed significant gaps in their teaching, when compared to the ideal curriculum. These findings provide important information and feedback to medical schools, which may enable them to modify and maximise the quality of teaching provided. [ABSTRACT FROM AUTHOR]

A telephone questionnaire was administered to staff of Australian medical schools to determine the amount and nature of undergraduate teaching provided to students on the health care of people with an intellectual disability. Academic appointments in intellectual disability and the range of people involved in teaching were also recorded. Results indicate that medical schools differ widely in the amount of teaching offered and that this is influenced by the presence of academic appointments in intellectual disability. The strengths and weaknesses of curriculums are discussed and suggestions for maximising the quality of teaching are put forward. Concerns are also raised about intellectual disability being lost to more mainstream subjects, especially at a time when many medical schools are changing their curriculum to a problem based format. [ABSTRACT FROM AUTHOR]

Introduction: People with intellectual disability experience poorer health outcomes compared with the general population, partly due to the difficulties of accessing preventive care in primary care settings. There is good evidence that structured annual health assessments can enhance quality of care for people with intellectual disability, and their use has become recommended policy in several high-income countries. However, uptake remains low. The Theoretical Domains Framework (TDF) offers a conceptual structure for understanding barriers to implementation and has been usefully applied to inform implementation of health assessments for other high-need groups, but not for people with intellectual disability. We conducted a scoping review of the literature, using the TDF, to identify barriers and facilitators influencing primary care practitioners' implementation of annual health assessments for people with intellectual disability as part of routine primary care practice., Methods: This study was conducted according to the JBI methodological approach for scoping reviews. Searches were conducted in Medline (OVID-SP), Embase (OVID-SP), PsycINFO (OVID-SP), CINHAL (EBSCO), Scopus (Elsevier) and Web of Science (Clarivate) for relevant peer-reviewed publications up to May 2023. Screening, full-text review and data extraction were completed by two independent reviewers. Data were extracted and mapped to the TDF to identify relevant barriers and facilitators., Results: The search yielded 1057 publications, with 21 meeting the inclusion criteria. Mapping data to the TDF, the most frequently identified domains were (a) environmental context and resources, (b) skills, (c) knowledge and (d) emotion. Predominant factors impacting on implementation included practitioners' lack of awareness about health assessments and their identified benefits; inadequate training and experience by practitioners in the delivery of health assessments for people with intellectual disability; insufficient time to provide health assessments; and practitioner burnout., Conclusion: Using a theory-informed behavioural framework, our review aids understanding of the barriers and facilitators to improving the implementation of health assessments as part of routine care for people with intellectual disability. However, there is a clear need for further qualitative research to examine the perceptions of primary care practitioners regarding implementation barriers and facilitators to health assessments in general, including views from practitioners who are not currently undertaking health assessments., (© 2024. The Author(s).)

Evidence-based practice provides the foundation for high quality patient care, and in the NHS, research is seen as vital to enable service transformation and improve outcomes. Research is one of the four pillars of enhanced and advanced clinical practice and is therefore a fundamental part of podiatric surgery services. In order to meet the UK health research strategies, the most recent being 'Saving and Improving Lives: The Future of UK Clinical Research Delivery' (2021), the Faculty of Podiatric Surgery in the UK agreed to support the development of research priorities in order to inform a future research strategy.The Podiatric Surgery Research Strategy Group was set up and embarked on a project with the aim of engaging its members in formulating and agreeing national research priorities. The initial stage included a national research scoping survey to identify key themes, topic, and research questions. The final stage consisted of developing and enabling a live consensus vote conducted at the 2022 national Faculty of Podiatric Surgery Conference. At the end of the vote, the top five research topics that met the agreement criteria were: 1. Surgical treatment - forefoot, 2. Patient reported outcome measures, 3. Post-operative management, 4. Surgical treatment - midfoot and 5. Service delivery. The top five research questions that met the criteria were1. How does quality of life improve following elective foot surgery? 2. How does podiatric surgery benefit the health of the population? 3. How does podiatric surgery benefit the health of the population in the at-risk foot? 4. What is the most effective Lapidus fixation option? and 5. What is the benefit of utilising PASCOM-10 to improve large scale outcome data? These will inform the initial UK podiatric surgery research priorities in the next three to five years., (© 2023. The Author(s).)

Lay Abstract: Autistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people's views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person's physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals.

Objectives: Guided by minority stress theory, we explored the association between sexual identity, justice system involvement, self-harm and suicide attempts, among a cohort of incarcerated adults in Australia., Methods: A sample of 2698 adults incarcerated in Queensland and Western Australia were surveyed between 1 August 2008 and 12 August 2016 about their current psychological distress, mental health diagnoses, contact with mental health services, and lifetime and recent self-harm and suicide attempts. We used multivariable logistic regression to explore the relationship between sexual orientation, prior criminal justice system involvement, mental health and demographic factors., Results: Five percent of the sample identified as gay, lesbian or bisexual, with 37% of lesbian, gay, bisexual and other same-sex attracted individuals reporting that they had self-harmed (vs 14% of heterosexual peers; χ 2  = 52.4; p  < 0.001) and 49% reporting a history of at least one suicide attempt (vs 23%; χ 2  = 49.2; p  < 0.001). Lesbian, gay, bisexual and other same-sex attracted people were 2.1 times (95% confidence interval: [1.4, 3.3]) and 1.8 times (95% confidence interval: [1.2, 2.8]) more likely to report a history of self-harm and suicide attempt, respectively, than non-lesbian, gay, bisexual and other same-sex attracted respondents., Conclusion: Intersectionality theory suggests that people who are navigating two or more marginalised identities often experience a compounding of internal and external stressors. Consistent with that theory, lesbian, gay, bisexual and other same-sex attracted people who experience incarceration may be at particularly high risk of self-harm and suicidal behaviour. Custodial settings should both improve cultural competency for frontline staff working with lesbian, gay, bisexual and other same-sex attracted individuals and improve access to mental health services during incarceration.

Background: Compared with the general population, autistic adults experience higher rates of physical and mental health conditions, premature morbidity and mortality, and barriers to health care. A health check for autistic people may improve their health outcomes., Aim: To establish the views of autistic people towards a primary care health check for autistic people., Design & Setting: Cross-sectional questionnaire study in England and Wales., Method: A questionnaire was sent to autistic adults with physical health conditions in England and Wales. A total of 458 people (441 autistic adults and 17 proxy responders) completed the questionnaire., Results: Most responders (73.4%, n = 336) thought a health check is needed for all autistic people. Around half of the participants thought a health check should be offered from childhood and the health check appointment should last between 15 and 30 minutes. Autistic people were positive about providing primary care staff with contextual information regarding their health and the reasonable adjustments they would like before their health check appointment. Training about autism and the health check was considered important, alongside adequate time for discussions in the health check appointment (all by over 70% of responders). The clinician's autism knowledge, seeing a familiar clinician, environmental adaptations, appropriate information, and accessible appointments were considered particularly important in making a health check accessible., Conclusion: Autistic people and relatives were supportive of a primary care health check for autistic people. Information gathered was used to support the design of a primary care health check for autistic adults., (Copyright © 2022, The Authors.)

Background: People with intellectual disability experience inadequate access to general practice and poorer health outcomes than the general population. While some access barriers have been identified for this population, these studies have often used narrow definitions of access, which may not encompass the multiple dimensions that influence access to general practice. To address this gap, we conducted a scoping review to identify factors impacting access to general practice for people with intellectual disability in Australia, using a holistic framework of access conceptualised by Levesque and colleagues., Methods: This scoping review followed Joanna Briggs Institute methodology and was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. Medline (Ovid), Scopus, CINAHL, Informit and PsycINFO databases were searched. Screening, full-text review and data extraction were completed by two independent reviewers, with consensus reached at each stage of the study. Data were extracted, coded and synthesised through deductive qualitative analysis - using the five corresponding conceptual dimensions within Levesque and colleagues' theoretical framework of access, which incorporate both supply-side features of health systems and services, and demand-side characteristics of consumers and populations., Results: The search identified 1364 publications. After duplicate removal, title and abstract screening and full-text review, 44 publications were included. Supply-side factors were more commonly reported than demand-side factors, with the following issues frequently identified as impacting access to general practice: limited general practitioner education about, and/or experience of, people with intellectual disability; communication difficulties; and inadequate continuity of care. Less frequently included were factors such as the health literacy levels, promotion of general practice services and availability of complete medical records., Conclusions: This is the first scoping review to assess access barriers for people with intellectual disability using a comprehensive conceptualisation of access. The findings highlight the need for increased efforts to address demand-side dimensions of access to general practice and offer a basis for a balanced portfolio of strategies that can support recent policy initiatives to enhance access to care for people with intellectual disability., (© 2022. The Author(s).)