Tackling structural stigma: a systems perspective.

INTRODUCTION: Structural stigma in the global HIV response is a "moving target" that constantly evolves as the epidemic changes. Tackling structural stigma requires an understanding of the drivers and facilitators of stigma in complex community, policy and health systems. In this paper, we present findings from a study adopting a systems perspective to understand how to tackle structural stigma via the Meaningful Involvement of People with HIV/AIDS (MIPA), while highlighting the challenges in demonstrating peer leadership from people living with HIV (PLHIV). METHODS: Through a long-term ongoing community-research collaboration (2015-2023), the study applied systems thinking methods to draw together the insights of over 90 peer staff from 10 Australian community and peer organizations. We used hypothetical narratives, affinity methods and causal loop diagrams to co-create system maps that visualize the factors that influence the extent to which peer leadership is expected, respected, sought-out and funded in the Australian context. We then developed draft indicators of what we should see happening when PLHIV peer leadership and MIPA is enabled to challenge structural stigma. RESULTS: Participants in the collaboration identified the interactions at a system level, which can enable or constrain the quality and influence of PLHIV peer leadership. Participants identified that effective peer leadership is itself affected by structural stigma, and peer leaders and the programmes that support and enable peer leadership must navigate a complex network of causal pathways and strategic pitfalls. Participants identified that indicators for effective PLHIV peer leadership in terms of engagement, alignment, adaptation and influence also required indicators for policy and service organizations to recognize their own system role to value and enable PLHIV peer leadership. Failing to strengthen and incorporate PLHIV leadership within broader systems of policy making and health service provision was identified as an example of structural stigma. CONCLUSIONS: Incorporating PLHIV leadership creates a virtuous cycle, because, as PLHIV voices are heard and trusted, the case for their inclusion only gets stronger. This paper argues that a systems perspective can help to guide the most productive leverage points for intervention to tackle structural stigma and promote effective PLHIV leadership.

Embedding experiential learning in undergraduate health promotion curriculum.

ISSUE ADDRESSED: The experiential teaching method draws on research-based principles of adult education. The integration of academic learning and practice provides students opportunities to increase their knowledge while developing capabilities to meet the International Union for Health Promotion and Education (IUHPE) Core Competencies and Professional Standards. METHODS: Community Health Promotion is a second-year subject offered in the Bachelor of Health Sciences at La Trobe University. The project-based curriculum, delivered over 12 weeks, consists of theoretical material which students apply through hands-on project planning, implementation and evaluation; projects are carried out on campus. To bridge academic content and project practicalities the Victorian government's Integrated Health Promotion Resource Kit is used as a foundational teaching resource. Students are supported by teaching staff and a project sponsor throughout the project cycle. Assessment tasks comprised of problem definition and priority setting, project planning and critical reflection on project implementation. DISCUSSION: The experiential learning approach enables students, in a self-directed yet collaborative manner, to develop skills aligned with health promotion competencies. Students were able to safely "experiment" and apply health promotion theory while actively developing project management and partnerships skills, reflecting on their practice and communicating project findings. Students consistently provide feedback articulating the value they place on the purposeful and scaffolded transition of classroom learning to real-life environments which they recognised as building their competencies and enhancing their employability skills. CONCLUSION: Experiential learning through small-group projects prepares students for the health promotion workforce in a low-risk, high-impact educational setting while contributing to promoting the ethos of a health-promoting university. SO WHAT?: The authentic assessments provide students with the opportunity to develop competency within several domains of the IUHPE Core Competencies and Professional Standards.

Delayed HIV testing and treatment seeking, and associated support needs among people living with HIV in Malaysia: a qualitative study.

Background By the end of 2017, an estimated 83% of people living with HIV in Malaysia knew their serostatus. However, the Ministry of Health reported a high proportion of those newly diagnosed had low CD4 counts <200 cells/µL, indicating late presentation for testing may be pervasive. METHODS: A qualitative study was conducted to explore the context and experiences of people at risk of HIV infection testing and seeking treatment later in the course of their infection. Participants recruited (n = 20) were HIV positive, aged >18 years who fit the description of late presentation (World Health Organization defined as CD4 cell count <350 cells/µL). Semi-structured interviews were conducted, and a framework approach was used to interrogate the data. RESULTS: Many participants perceived themselves at low risk of HIV infection and did not undergo routine voluntary testing; rather, they were diagnosed when seeking treatment for serious illness or as part of mandatory employment-related testing. Perceived lack of confidentiality and potential discriminatory behaviour at public health facilities were significant deterrents to testing. Participants were satisfied with HIV treatment, but rarely sought psychosocial support in order to 'protect' their privacy. CONCLUSION: Unless drivers of HIV infection are effectively addressed, including stigmatising and discriminatory practices, and low health literacy, the occurrence of late presentation will persist. Their collective impact will not only jeopardise efforts to improve the treatment cascade, but may also impact engagement with other biomedical prevention and care technologies.

Second Primary Malignancies in Patients with Well-differentiated/Dedifferentiated Liposarcoma.

BACKGROUND: Well-differentiated/dedifferentiated (WD/DD) liposarcoma is a rare malignancy of putative adipocyte origin. To our knowledge, there have only been isolated case reports describing second primary cancer in patients with this disease. We report on a combined case series of such patients and explore the frequency of this occurrence using a national cancer database. MATERIALS AND METHODS: Demographics and clinicopathological data were collected from patients with WD/DD liposarcoma who were found to have a concurrent or subsequent second primary cancer, at one of three sarcoma referral centers from 2014-2016. The Surveillance, Epidemiology and End Results (SEER) database was also queried to identify adult patients diagnosed with WD/DD liposarcoma between 1973-2012. Observed/expected (O/E) ratios of second primary malignancies among these cases were calculated by comparison to the age-adjusted cancer incidence in the general population using SEER*stat software. RESULTS: In total, 26 out of 312 consecutive patients (8.3%) with WD/DD liposarcoma at our centers had a second primary cancer identified within 2 years of liposarcoma diagnosis. In the SEER database, among 1,845 patients with WD/DD liposarcoma, 75 (4.1%) had a second cancer within 2 years after liposarcoma diagnosis (O/E ratio=1.81, 99% confidence interval(CI)=1.33-2.40). Patients less than 50 years old at the time of liposarcoma diagnosis had a higher O/E ratio for second primary malignancy compared to older patients. A total of 269 patients (14.6%) developed a second cancer (O/E=1.33, 99% CI=1.15-1.54). CONCLUSION: In some patients with WD/DD liposarcoma, there appears to be an increased risk of having a second primary cancer. Further validation and investigation is needed, as this finding may have implications (e.g. closer screening) for patients with this disease.

Helping Carers Care: An Exploratory Study of Factors Impacting Informal Family Carers and Their Use of Aged Care Services.

This exploratory study considered the role of informal carers and their decision-making regarding various aged care services that supposedly support their ageing relatives. Consideration was given to the stressors and overall well-being of informal carers and the support services they did or did not receive during their time of caregiving. A questionnaire was utilised to gain exploratory quantitative and qualitative data plus basic demographic information from informal carers who connected with a single caregiver association based in Victoria, Australia. Several themes emerged from the analysis of data regarding carer well-being, carer decision-making and carer relationships-particularly with respect to the various authorities and organisations ostensibly responsible for supporting carers. While the majority of participants indicated a religious association, nevertheless spiritual considerations were not stress factors paramount in their decision-making or their criticism of carer support services. Other concerns dominated such as the need of having appropriate practical support, better case management, organisational transparency and greater recognition of the role of informal carers. Although this research was isolated to a particular locality, carers in similar situations globally have indicated comparable stresses and challenges further indicating that greater accountability and improved organisation are required for the support of carers internationally. Recommendations are suggested for how service providers can support carers-most importantly, the need for ongoing government assessment and government service improvement in order to help carers care into the future.