'Who, When, How to Share': Pilot study of a new disclosure decision-making programme for autistic adults.

LAY ABSTRACT: 'Who, When, How to Share' is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3 weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful. Thirty-two autistic adults took part in the programme and 19 of them completed it. Most participants who completed the programme liked the programme and found it helpful, but some felt that they needed more time and support to complete it. They suggested that the programme would be more accessible if it was more interactive, such as including videos and other ways to gain feedback on their progress. Surveys filled in by participants before and after the programme suggested that they became more confident and less stressed about sharing their autistic identity with others, but some felt they still needed to build more confidence in order to handle negative attitudes from others. More work is needed to improve and test the programme further.

Development of stigma-related support for autistic adults: Insights from the autism community.

LAY ABSTRACT: Many autistic adults experience public stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic adults may also apply unhelpful beliefs to themselves, which is known as internalised stigma. There is some evidence that both public stigma and internalised stigma are linked to poorer mental health in autistic adults. Clearly, it is crucial to change how society thinks and acts towards autistic people. There are several programmes that are trying to do this. But as change can be slow, support may also be needed to help autistic people cope with and challenge stigma. Using an online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma support programme for autistic adults is needed and, if so, what it should 'look' like. Most participants felt it was important for autistic adults to have support in managing stigma because of the harmful effects that stigma has on mental health and the challenges that autistic adults face in disclosing their diagnosis. However, participants were also concerned that such a programme could convey the message that autistic people, rather than society, need to change. Participants suggested that the programme should be positive and practical, helping autistic adults to understand and accept themselves, as well as learn context-specific strategies for responding to stigma and/or disclosing their diagnosis. They also stressed that the programme should be flexible and inclusive, recognising that autistic adults have very different needs and preferences.

A systematic review on autistic people's experiences of stigma and coping strategies.

Autism can be understood as a concealable stigmatized identity. This is the first systematic review to synthesize the literature on autistic people's experiences of stigma and coping strategies. 2877 studies were screened and 27 were included in this review. The reviewed literature demonstrates that autistic individuals are acutely aware of being stereotyped, judged, and discriminated by others. Autistic people also show signs of internalizing stigma, rendering them more vulnerable to low self-worth and poorer mental health. To manage the impact of stigma, the included studies suggest that autistic individuals may use these strategies: concealment and camouflaging, selective disclosure and self-advocacy, as well as positive reframing and reconstructing identity. However, the evidence is limited and mixed in terms of how helpful and effective these strategies are. Future studies should include autistic populations with a wider range of intellectual abilities and explore interventions that can support autistic people in managing stigma to supplement interventions that seek to reduce stigma towards autistic people. The power of language in perpetuating and challenging stigma also has important implications for research and practice, underscoring the need for researchers and practitioners to reflect carefully on the messages they are communicating about autism.

A qualitative study of autism services and supports in Singapore: Perspectives of service providers, autistic adults and caregivers.

LAY ABSTRACT: Because autism is a lifelong and complex condition, autistic people may need a range of supports cutting across different sectors (e.g. health, education and social care) at different stages of their lives. Studies in some countries have shown that autistic people and their families face difficulties accessing the services they need, but no research has been done on this topic in Singapore. To start addressing this gap, we interviewed 21 service providers, autistic adults and caregivers/parents of autistic children to find out their perceptions and experiences of autism services and supports in Singapore. Our participants told us that beyond improving access to autism-specific services, they also hoped to see more flexible supports in an inclusive environment and a broader change in societal attitudes. This study highlights that autism service provision should be informed by autistic voices and not only focus on impairment but also recognise the strengths of autistic people alongside their very real needs. The whole of society - including policymakers, professionals, employers, educators, families and autistic people themselves - needs to work together to fight autism stigma and discrimination.

Framing global discourses on non-communicable diseases: a scoping review.

BACKGROUND: The choices that policymakers make are shaped by how their problems are framed. At last, non-communicable diseases (NCDs) have risen high on the global policy agenda, but there are many disputed issues. First, what are they? Their name refers not to what they are but what they are not. Second, where do their boundaries lie? What diseases are included? Third, should we view their causes as mainly biomedical, behavioural, or social, or a combination? Our failure to resolve these issues has been invoked as a reason for our limited progress in developing and implementing effective remedies. In this scoping review, we ask "What is known from the existing literature about how NCDs are framed in the global policy discourses?" We answer it by reviewing the frames employed in policy and academic discourses. METHODS: We searched nine electronic databases for articles published since inception to 31 May 2019. We also reviewed websites of eight international organisations to identify global NCDs policies. We extracted data and synthesised findings to identify key thematic frames. RESULTS: We included 36 articles and nine policy documents on global NCDs policies. We identified five discursive domains that have been used and where there are differing perspectives. These are: "Expanding the NCDs frame to include mental health and air pollution"; "NCDs and their determinants"; "A rights-based approach to NCDs"; "Approaches to achieving policy coherence in NCDs globally"; and "NCDs as part of Sustainable Socio-economic Development". We further identified 12 frames within the five discursive domains. CONCLUSIONS: This scoping review identifies issues that remain unresolved and points to a need for alignment of perspectives among global health policy actors, as well as synergies with those working on mental health, maternal health, and child health. The current COVID-19 pandemic warrants greater consideration of its impact on global NCDs policies. Future global strategies for NCDs need to consider explicitly how NCDs are framed in a changing global health discourse and ensure adequate alignment with implementation and global health issues. There is a need for global strategies to recognise the pertinent role of actors in shaping policy discourses.

Health system resilience in managing the COVID-19 pandemic: lessons from Singapore.

Singapore, one of the first countries affected by COVID-19, adopted a national strategy for the pandemic which emphasised preparedness through a whole-of-nation approach. The pandemic was well contained initially until early April 2020, when there was a surge in cases, attributed to Singapore residents returning from hotspots overseas, and more significantly, rapid transmission locally within migrant worker dormitories. In this paper, we present the response of Singapore to the COVID-19 pandemic based on core dimensions of health system resilience during outbreaks. We also discussed on the surge in cases in April 2020, highlighting efforts to mitigate it. There was: (1) clear leadership and governance which adopted flexible plans appropriate to the situation; (2) timely, accurate and transparent communication from the government; (3) public health measures to reduce imported cases, and detect as well as isolate cases early; (4) maintenance of health service delivery; (5) access to crisis financing; and (6) legal foundation to complement policy measures. Areas for improvement include understanding reasons for poor uptake of government initiatives, such as the mobile application for contact tracing and adopting a more inclusive response that protects all individuals, including at-risk populations. The experience in Singapore and lessons learnt will contribute to pandemic preparedness and mitigation in the future.

Lessons learnt from easing COVID-19 restrictions: an analysis of countries and regions in Asia Pacific and Europe.

The COVID-19 pandemic is an unprecedented global crisis. Many countries have implemented restrictions on population movement to slow the spread of severe acute respiratory syndrome coronavirus 2 and prevent health systems from becoming overwhelmed; some have instituted full or partial lockdowns. However, lockdowns and other extreme restrictions cannot be sustained for the long term in the hope that there will be an effective vaccine or treatment for COVID-19. Governments worldwide now face the common challenge of easing lockdowns and restrictions while balancing various health, social, and economic concerns. To facilitate cross-country learning, this Health Policy paper uses an adapted framework to examine the approaches taken by nine high-income countries and regions that have started to ease COVID-19 restrictions: five in the Asia Pacific region (ie, Hong Kong [Special Administrative Region], Japan, New Zealand, Singapore, and South Korea) and four in Europe (ie, Germany, Norway, Spain, and the UK). This comparative analysis presents important lessons to be learnt from the experiences of these countries and regions. Although the future of the virus is unknown at present, countries should continue to share their experiences, shield populations who are at risk, and suppress transmission to save lives.

A systematic review of community nursing interventions focusing on improving outcomes for individuals exhibiting risk factors of cardiovascular disease.

OBJECTIVE: To examine the role of community-based nursing interventions in improving outcomes for community-dwelling individuals exhibiting risk factors of cardiovascular disease (CVD). DESIGN: A systematic review and narrative synthesis. DATA SOURCES: Seven electronic databases (MEDLINE, CINAHL, Global Health, LILACS, Africa-Wide Information, IMEMR, and WPRIM) were searched from inception to 16 March 2018. REVIEW METHODS: This review included outcomes from studies that were led by or delivered primarily by nurses for individuals exhibiting risk factors of CVD in community settings. At least two independent reviewers performed study selection, data extraction and risk of bias. RESULTS: 46 studies met the eligibility criteria. Community nursing interventions were found to be effective in improving clinical outcomes of symptom control, symptom awareness, symptom management, and social outcomes. Effective interventions were found to be facilitated by a community-centric approach, participant empowerment, reinforcement strategies, a targeted approach towards underserved populations, and home visits. These resulted in positive outcomes such as significant reductions in HbA1c for diabetic patients, attainment of blood pressure targets for hypertensive patients and greater improvement in self-reported dietary intake for patients with hyperlipidaemia. CONCLUSION: Community-based nurse-led interventions can result in positive outcomes for patients with risk factors of CVD. However, the success of such interventions needs to be facilitated by appropriate funding, thoughtful intervention design and training opportunities for nurses. IMPACT: Community-based nursing interventions are largely effective in improving clinical and social outcomes for community-dwelling individuals with risk factors of CVD.

The role of community-based nursing interventions in improving outcomes for individuals with cardiovascular disease: A systematic review.

OBJECTIVE: To examine the role of community-based nursing interventions in improving outcomes for community-dwelling individuals with cardiovascular disease. DESIGN: A systematic review and narrative synthesis. DATA SOURCES: Seven electronic databases (MEDLINE, CINAHL, Global Health, LILACS, Africa-Wide Information, IMEMR and WPRIM) were searched from inception to 16 March 2018 without language restrictions. REVIEW METHODS: We included studies evaluating the outcomes of interventions led by, or primarily delivered by, nurses for individuals with cardiovascular disease in community settings. Study selection, data extraction and risk of bias assessments were performed by at least two independent reviewers. RESULTS: Twenty-eight studies met the inclusion criteria and were included in this review. Community-based nursing interventions improved outcomes in four key areas: (1) self-care, (2) health, (3) healthcare utilisation, and (4) quality of care. Significant improvements were reported in patients' knowledge and ability to self-manage, severity of disease, functional status, quality of life, risk of death, hospital readmission days, emergency department visits, healthcare costs and satisfaction with care. Facilitators to intervention effectiveness included the use of an individualised approach, multidisciplinary approach, specially trained nurses, family involvement and the home setting. Conversely, barriers to intervention success included limitations in nurses' time and skills, ineffective interdisciplinary collaboration and insufficient intervention intensity. CONCLUSIONS: The overall evidence is positive regarding the role of community-based nursing interventions in improving outcomes for individuals with cardiovascular disease. However, this review highlights the need for more robust research establishing definitive relationships between different types of interventions and outcomes as well as evaluating the cost-effectiveness of these interventions to aid the development of sustainable policy solutions.

Biopsychosocial experiences and coping strategies of elderly ESRD patients: a qualitative study to inform the development of more holistic and person-centred health services in Singapore.

BACKGROUND: As the incidence and prevalence rates of end stage renal disease (ESRD) rise globally, a disproportionate increase has been observed in the elderly population. Singapore has the fifth highest incidence of treated ESRD worldwide, with the upward trend of ESRD being most apparent among those aged 70 years and older. Although it is well-documented that ESRD patients suffer an impaired quality of life compared to the general population, there is limited research focusing on the unique experiences and needs of elderly ESRD patients in Asian populations. To address the knowledge gap, this study seeks to explore the impact of ESRD and dialysis on the quality of life of elderly (≥70 years old) ESRD patients in Singapore and examine the coping strategies utilised by these patients. METHODS: This qualitative study involved semi-structured, in-depth interviews with 7 peritoneal dialysis patients, 5 haemodialysis patients, 4 patients on non-dialysis supportive care and 7 caregivers in Singapore. Interviews were conducted in English, Chinese, and Malay and fully transcribed. QSR NVivo 11 software was used for analysis. RESULTS: Participants reported that ESRD and dialysis had an impact on three highly interconnected areas of their quality of life: (a) biological/physical (general symptoms, neuromuscular problems, skin problems and poor sleep quality); (b) psychological (depressive symptoms, anxiety and fears, stress and negative self-perceptions); and (c) social (increased dependence on family and loss of social life). There were four key strategies that participants used to cope with these biopsychosocial challenges: (a) family support (financial, practical and emotional support); (b) religious/spiritual support (experiencing gratitude/contentment, the power of prayer and belonging to a faith community); (c) avoidance (cognitive avoidance and distraction techniques); and (d) acceptance (positive thinking and problem solving). CONCLUSIONS: This study has provided insights into the biopsychosocial impact of ESRD and dialysis, as well as cultural and religious factors that shape the experiences and coping mechanisms of elderly ESRD patients and caregivers in Singapore, which can be used to further the development and implementation of more holistic and person-centred services to help each patient achieve a better quality of life.

Perspectives on decision making amongst older people with end-stage renal disease and caregivers in Singapore: A qualitative study.

BACKGROUND: End-stage renal disease (ESRD) is increasing both globally and in Asia. Singapore has the fifth highest incidence of ESRD worldwide, a trend that is predicted to rise. Older patients with ESRD are faced with a choice of haemodialysis, peritoneal dialysis or conservative management, all of which have their risks and benefits. OBJECTIVE: This study seeks to explore perspectives on decision making amongst older (≥70) Singaporean ESRD patients and their caregivers to undergo (or not to undergo) dialysis. DESIGN: Qualitative study design using semi-structured interviews. SETTING AND PARTICIPANTS: Twenty-three participants were recruited from the largest tertiary hospital in Singapore: seven peritoneal dialysis patients, five haemodialysis patients, four patients on conservative management and seven caregivers. RESULTS: While some patients believed that they had made an independent treatment decision, others reported feeling like they had no choice in the matter or that they were strongly persuaded by their doctors and/or family members to undergo dialysis. Patients reported decision-making factors including loss of autonomy in daily life, financial burden (on themselves or on their families), caregiving burden, alternative medicine, symptoms and disease progression. Caregivers also reported concerns about financial and caregiving burden. DISCUSSION AND CONCLUSION: This study has identified several factors that should be considered in the design and implementation of decision aids to help older ESRD patients in Singapore make informed treatment decisions, including patients' and caregivers' decision-making factors as well as the relational dynamics between patients, caregivers and doctors.

More talk than action: gender and ethnic diversity in leading public health universities.

Improving the career progression of women and ethnic minorities in public health universities has been a longstanding challenge, which we believe might be addressed by including staff diversity data in university rankings. We present findings from a mixed methods investigation of gender-related and ethnicity-related differences in career progression at the 15 highest ranked social sciences and public health universities in the world, including an analysis of the intersection between sex and ethnicity. Our study revealed that clear gender and ethnic disparities remain at the most senior academic positions, despite numerous diversity policies and action plans reported. In all universities, representation of women declined between middle and senior academic levels, despite women outnumbering men at the junior level. Ethnic-minority women might have a magnified disadvantage because ethnic-minority academics constitute a small proportion of junior-level positions and the proportion of ethnic-minority women declines along the seniority pathway.

The social determinants of chronic disease management: perspectives of elderly patients with hypertension from low socio-economic background in Singapore.

BACKGROUND: In Singapore, the burden of hypertension disproportionately falls on the elderly population of low socio-economic status. Despite availability of effective treatment, studies have shown high prevalence of sub-optimal blood pressure control in this group. Poor hypertension management can be attributed to a number of personal factors including awareness, management skills and overall adherence to treatment. However, these factors are also closely linked to a broader range of community and policy factors. This paper explores the perceived social and physical environments of low socio-economic status and elderly patients with hypertension; and how the interplay of factors within these environments influences their ability to mobilise resources for hypertension management. METHODS: In-depth interviews were conducted in English, Chinese, Chinese dialects and Malay with 20 hypertensive patients of various ethnic backgrounds. Purposive sampling was adopted for recruitment of participants from a previous community health screening campaign. Interviews were translated into English and transcribed verbatim. We deductively analysed leveraging on the Social Model of Health to identify key themes, while inductive analysis was used simultaneously to allow sub-themes to emerge. RESULTS AND DISCUSSION: Our finding shows that financing is an overarching topic embedded in most themes. Despite the availability of multiple safety nets, some patients were left out and lacked capital to navigate systems effectively, which resulted in delayed treatment or debt. The built environment played a significant role in enabling patients to access care easily and lead a more active lifestyle. A closer look is needed to enhance the capacity of patients with mobility challenges to enjoy equitable access. Furthermore, the establishment of community based elderly centres has enabled patients to engage in meaningful and healthy social activities. In contrast, participants' descriptions showed that their communication with healthcare professionals remained brief, and that personalised and meaningful interactions that are context and culturally specific are essential to advocate for patients' overall treatment adherence and lifestyle modification. CONCLUSION: Elderly patients with hypertension from lower socio-economic background have various unmet needs in managing their hypertension and other comorbidities. These needs are closely related to broader societal factors such as socio-demographic characteristics, support systems, urban planning and public policies, and health systems factors. Policy decisions to address these needs require an integrated multi-sectoral approach grounded in the principles of health equity.