Perceptions of people who inject drugs towards HIV pre-exposure prophylaxis in Australia.

Background People who inject drugs (PWID) are a priority for HIV prevention. This study aimed to determine perceptions, potential eligibility and willingness to use PrEP among PWID in Sydney. METHODS: Clients completed a cross-sectional survey to collect data on demographics, perceived risk of HIV and willingness to use PrEP, which were then analysed. RESULTS: Twelve (7%) of 172 HIV-negative participants were eligible for PrEP under current guidelines for injecting reasons, of whom three would also be eligible for sexual risk, leaving nine (5%) eligible for injecting reasons alone. Half had heard of PrEP and, of these, 65% would consider taking it. Most (88%) thought they would continue using needle syringe program services. A minority (8%) indicated they may be likely to share needles and syringes or be less concerned about injecting partners' HIV status (26%). CONCLUSIONS: Although PrEP will benefit a small proportion of PWID, this may equate to a significant number nationally. Policy development around PrEP incorporating affected populations will best support the community of people currently injecting to keep rates of HIV low.

Evaluating the Managing Medicines for People With Dementia Website Version 2.

The Managing Medicines for People With Dementia version 2 website was developed in three languages, English, Italian, and Macedonian, to assist informal caregivers in the task of managing medications. Medication management is a complex task with potentially high stakes health outcomes, including hospitalization and death. A mixed-methods evaluation was carried out. A survey was available to site users and Web log data were collected over a 3-month period. Subsequently, the quality and suitability of the information and readability and usability of the Web site were evaluated. Focus groups and interviews were conducted with end users from all three language groups. Data collected from the evaluation surveys during the pilot test showed that users were generally satisfied with site usability (77%). The results of the readability testing indicate that future versions could be improved. Feedback from the focus groups and interviews was generally positive. The use of multiple methodologies provided comprehensive testing that is likely to have identified the majority of usability issues. Ways in which the site can be maintained with up-to-date information and be promoted to the target population, informal carers, need to be explored.

Aboriginal people's perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life.

BACKGROUND: Patient-reported outcome measures (PROMs) provide clinicians and consumers a platform to inform and improve healthcare planning and management. Aboriginal people experience disproportionately high rates of chronic diseases, including type 2 diabetes. Treatment and management require holistic approaches that draw on culturally relevant resources and assessment tools. This study explored perceptions of Aboriginal people about two diabetes management-related PROMs (PROMIS-29, PAID Scale). METHODS: Twenty-nine Aboriginal people living with diabetes in the Shoalhaven discussed two PROMs in one of four focus groups or at an individual interview. Preliminary data coding was conducted by clinician researchers, with thematic analysis overseen by Aboriginal co-researchers. Subsequent individual interviews with participants were undertaken to seek further feedback and articulate what is needed to improve methods of evaluating Aboriginal people's self-reported quality of life and diabetes management. RESULTS: The PROMs did not capture information or knowledge that Aboriginal people considered relevant to their diabetes-related health care. Participants' recommendations included adapting survey materials to be more culturally sensitive; for example, by improving the alignment of measures with common day-to-day activities. This study also describes a genuine collaborative, Aboriginal community-guided approach to evaluate 'fit-for-purpose' diabetes management tools. CONCLUSIONS: Appropriate evaluation methods are paramount to address the disproportionate burden of diabetes experienced by Aboriginal peoples and overcome inverse diabetes care. Our learnings will contribute to development of tools, resources or methods that capture culturally tailored outcome measures. Study findings are relevant to clinicians and researchers using and/or developing Patient Reported Measures, particularly in relation to the practicality of tools for First Nations peoples.

Finding Your Way - A shared decision making resource developed by and for Aboriginal people in Australia: Perceived acceptability, usability, and feasibility.

BACKGROUND: Finding Your Way is a culturally adapted shared decision making (SDM) resource for Aboriginal (First Nations) people of Australia. It integrates the Eight Ways of Aboriginal Learning (8 Ways) and was created by Aboriginal health workers and community members in New South Wales (NSW), Australia. OBJECTIVE: To explore the perceived acceptability, usability, and feasibility of Finding Your Way as a SDM resource for Aboriginal people making health and wellbeing decisions. METHODS: The web-based resources were disseminated using social media, professional networks, publications, and the 'Koori grapevine'. Thirteen 'champions' also promoted the resources. An online questionnaire was available on the website for three months. Framework analysis determined early indications of its acceptability, usability, and feasibility. Web and social media analytics were also analysed. Partnership with and leadership by Aboriginal people was integrated at all phases of the project. RESULTS: The main landing page was accessed 5219 times by 4259 users. 132 users completed the questionnaire. The non-linear and visual aspects of the resources 'speak to mob' and identified with Aboriginal culture. The inclusion of social and emotional well-being, and the holistic approach were well received by the small number of users who opted to provide feedback. They suggested that non-digital formats and guidance on the resources are required to support use in clinical practice. CONCLUSION: The 8 Ways enabled the development of a culturally safe SDM resource for Aboriginal people, which was well received by users who took the time to provide feedback after a brief dissemination process. Additional accessible formats, practice guides and training are required to support uptake in clinical practice. PRACTICE IMPLICATIONS: Finding Your Way could be used to help improve experiences, health literacy, decision making quality and outcomes of healthcare for Aboriginal Australians.

Assessing cultural appropriateness of patient-reported outcome measures for Aboriginal people with diabetes: study protocol.

BACKGROUND: Patient-reported outcome measures (PROMs) provide patients with a platform to report on healthcare services and interventions, including the management of diabetes and other chronic diseases. Given the major disparity in incidence and prevalence of diabetes between Aboriginal and non-Aboriginal people, it is crucial that PROMs meet the cultural, spiritual and medical needs of this high-risk population. Anecdotal evidence indicates that PROMs do not capture accurate information about the healthcare of Aboriginal people with Type 2 diabetes. Therefore, the aim of this study is to explore the perceptions of Aboriginal people in regional New South Wales (NSW), Australia, about the cultural appropriateness of a set of PROMs relating to diabetes management. METHODS/DESIGN: Up to 50 Aboriginal people aged 18 years or older with type 1 or type 2 diabetes living in the Shoalhaven region in NSW, will be recruited. Eligible, consenting participants will attend a focus group or individual interview where they will review the PROM tools (PROMIS 29 and PAID scale) currently used for diabetes management. Semi-structured questions will be used to gather information about PROMs and discussions will be recorded for analysis. Research team members will yarn about the data with Aboriginal co-researchers and community stakeholders to apply an Indigenous lens to coding and thematic analysis. CONCLUSION: This study will explore the cultural appropriateness of government-initiated evaluation of health outcomes, and make recommendations about how these evaluations can be better suited to Aboriginal people. The lessons from this study will be of interest to those conducting research or quality assessment activities related to PROMs, and those involved with Aboriginal-focused research and project implementation.