"My Autism is Linked with Everything": at the Crossroads of Autism and Diabetes.

Autistic adults experience stark health disparities and difficulties accessing health care. Their realities of managing complex health conditions are unknown. Our research explored the experience of Autistic adults self-managing diabetes. Interviews with Autistic adults with diabetes and their support people were thematically analysed to identify three key themes. The Autistic experience influenced diabetes self-management, including autism-unique challenges and strengths. Participants prioritised avoiding Autistic burnout over diabetes self-management; mitigating the psychosocial pressures of neurotypical systems took precedence. Health professionals often separated autism and diabetes subsequently overlooking key factors impacting diabetes self-management. To better meet the needs of Autistic adults, diabetes care and health management more broadly should be considered within the context of autism, including supports for self-management during Autistic burnout.

Recognising, supporting and understanding Autistic adults in general practice settings.

BACKGROUND: The health and wellbeing of Autistic people are well below those of their non-Autistic counterparts. With studies showing a reduced life expectancy and poor physical and mental health, it is important that healthcare professionals strive towards improving the lives of Autistic people by recognising those who are undiagnosed and/or misdiagnosed and providing meaningful support. OBJECTIVE: The aim of this article is to empower general practitioners (GPs) to feel comfortable in recognising potentially undiagnosed Autistic adults. The authors aim to further the understanding of the Autistic experience, including frequently co-occurring physical and mental health conditions, and to give GPs some tools to make the experience of accessing healthcare less problematic for Autistic people. DISCUSSION: The healthcare experiences of Autistic adults will be greatly improved with a knowledgeable, understanding and accepting GP as the cornerstone of their care.

Incorporating patient preferences in the management of multiple long-term conditions: is this a role for clinical practice guidelines?

BACKGROUND: Clinical practice guidelines provide an evidence-based approach to managing single chronic conditions, but their applicability to multiple conditions has been actively debated. Incorporating patient-preference recommendations and involving consumers in guideline development may enhance their applicability, but further understanding is needed. OBJECTIVES: To assess guidelines that include recommendations for comorbid conditions to determine the extent to which they incorporate patient-preference recommendations; use consumer-engagement processes during development, and, if so, whether these processes produce more patient-preference recommendations; and meet standard quality criteria, particularly in relation to stakeholder involvement. DESIGN: A review of Australian guidelines published from 2006 to 2014 that incorporated recommendations for managing comorbid conditions in primary care. Document analysis of guidelines examined the presence of patient-preference recommendations and the consumer-engagement processes used. The Appraisal of Guidelines for Research and Evaluation instrument was used to assess guideline quality. RESULTS: Thirteen guidelines were reviewed. Twelve included at least one core patient-preference recommendation. Ten used consumer-engagement processes, including participation in development groups (seven guidelines) and reviewing drafts (ten guidelines). More extensive consumer engagement was generally linked to greater incorporation of patient-preference recommendations. Overall quality of guidelines was mixed, particularly in relation to stakeholder involvement. CONCLUSIONS: Guidelines do incorporate some patient-preference recommendations, but more explicit acknowledgement is required. Consumer-engagement processes used during guideline development have the potential to assist in identifying patient preferences, but further research is needed. Clarification of the consumer role and investment in consumer training may strengthen these processes.

"We can talk while we're walking": seeking the views of adults with intellectual disability to inform a walking and social-support program.

To better understand how physical activity programs may contribute to improved health and social-support outcomes for people with intellectual disability, the authors conducted semistructured interviews with 11 people with intellectual disability and community-based volunteers in Brisbane, Australia. Three broad themes emerged: individual factors that generally facilitated activity, external factors that posed barriers to participation, and broader normative factors that directed participation. A key reflection arising out of the thematic analysis was that participants with intellectual disability and volunteers highlighted subtle but pervasive differences in barriers and facilitators to being active. Recommendations are provided for interventions aiming to improve physical activity and social support among those with intellectual disability. The authors' research process demonstrates the utility of seeking the views of potential participants before program rollout to inform implementation and demonstrates the usefulness of a qualitative, actively inclusive approach to health interventions.

Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research.

AIMS: Adults with intellectual disability experience substantial health inequities. Public health research aiming to improve the lives of this population group is needed. We sought to investigate the extent to which a sample of international public health research includes and identifies people with intellectual disability. METHODS: In this systematic review, we examined a select number of public health journals to determine (1) how often people with intellectual disability are explicitly included in randomised controlled trials (RCTs) and cohort studies and (2) how the presence of intellectual disability is identified and reported. RESULTS: Among eligible articles in these selected public health journals, it was found that cohort studies passively exclude people with intellectual disability, while RCTs actively exclude this population. Most general population articles that explicitly identified people with intellectual disability did so through self-report or proxy report and databases. CONCLUSIONS: A more extensive and adequate evidence base relating to the health of this overlooked population group is needed. A useful first step would be for researchers specialising in intellectual disability to identify how we can best assist mainstream researchers to include and identify people with intellectual disability in their population-level studies.

A systematic review of interventions aiming to improve involvement in physical activity among adults with intellectual disability.

BACKGROUND: Evidence suggests that most adults with intellectual disability do not participate in sufficient amounts of physical activity (PA). A systematic review of peer-reviewed studies that reported an intervention aiming to improve PA levels of adults with intellectual disability was conducted. METHODS: Keywords related to intellectual disability and physical activity were used to search relevant databases. Studies were excluded if they did not measure PA as an outcome for adults with intellectual disability, were non-English, and were not peer-reviewed. All relevant studies were included in the review regardless of methodological quality and design. RESULTS: Six articles met the inclusion criteria. These included health education or health promotion programs with PA, nutrition, and weight loss components. The quality of studies included in this review was generally poor. Most studies used a prepost design, sample sizes were small, and measurement tools were used that are not valid and reliable for the population assessed. CONCLUSIONS: PA interventions have the potential to improve the health and wellbeing of people with intellectual disability, a vulnerable group who require attention from public health practitioners and researchers. Given the health inequities that exist, public health researchers should target efforts to improve PA levels among this group.

Perceptions and experiences of access to public healthcare by people with disabilities and older people in Uganda.

INTRODUCTION: In the year 2000, a set of eight Millennium Development Goals (MDGs) were presented as a way to channel global efforts into the reduction of poverty and the promotion of social development. A global discussion regarding how to renew these goals is underway and it is in this context that the Goals and Governance for Global Health (Go4Health) research consortium conducted consultations with marginalized communities in Asia, Latin America, the Pacific and Africa as a way to include their voices in world's new development agenda. The goal of this paper is to present the findings of the consultations carried out in Uganda with two groups within low-resource settings: older people and people living with disabilities. METHODS: This qualitative study used focus group discussions and key informant interviews with older people in Uganda's Kamwenge district, and with persons with disabilities from the Gulu region. Thematic analysis was performed and emerging categories and themes identified and presented in the findings. FINDINGS: Our findings show that a sense of community marginalization is present within both older persons and persons living with disabilities. These groups report experiencing political sidelining, discrimination and inequitable access to health services. This is seen as the key reason for their poor health. Clinical services were found to be of low quality with little or no access to facilities, trained personnel, and drugs and there are no rehabilitative or mental health services available. CONCLUSION: Uganda must fulfil its international obligations and take progressive measures to meet the right to health for all its peoples, but especially allocate its limited resources to proactively support its most marginalized citizens. The growing impetus within post-2015 development negotiations to redress in-country health and other inequalities through a comprehensive systems approach is of importance in the Ugandan development context. This approach reflects the participant's perspectives, which also calls for a more equitable approach to health and development as opposed to a narrow, vertical focus on specific population groups, as was the case with the MDGs.