Patient-reported outcome measures (PROMs) are increasingly being used in the public health sector to assess patient health outcomes and experiences • Anecdotal evidence indicates that PROMs do not capture accurate information about the healthcare of Aboriginal people with type 2 diabetes • This paper shares important lessons about implementation of culturally appropriate research by a crosscultural team, with a focus on the ethical, methodological and consultative considerations in Aboriginal health research
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 managementrelated 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 diabetesrelated 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.
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.
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.
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