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OBJECTIVE: To (a) examine whether the effect of the Choosing Wisely consumer questions on question-asking and shared decision-making (SDM) outcomes differs based on individuals' health literacy and (b) explore the relationship between health literacy, question-asking and other decision-making outcomes in the context of low value care. METHODS: Preplanned analysis of randomised trial data comparing: the Choosing Wisely questions, a SDM video, both interventions or control (no intervention). Randomisation was stratified by participant health literacy ('adequate' vs 'limited'), as assessed by the Newest Vital Sign. MAIN OUTCOME MEASURES: Self-efficacy to ask questions and be involved in decision-making, and intention to engage in SDM. PARTICIPANTS: 1439 Australian adults, recruited online. RESULTS: The effects of the Choosing Wisely questions and SDM video did not differ based on participants' health literacy for most primary or secondary outcomes (all two-way and three-way interactions p>0.05). Compared with individuals with 'adequate' health literacy, those with 'limited' health literacy had lower knowledge of SDM rights (82.1% vs 89.0%; 95% CI: 3.9% to 9.8%, p<0.001) and less positive attitudes towards SDM (48.3% vs 58.1%; 95% CI: 4.7% to 15.0%, p=0.0002). They were also more likely to indicate they would follow low-value treatment plans without further questioning (7.46/10 vs 6.94/10; 95% CI: 0.33 to 0.72, p<0.001) and generated fewer questions to ask a healthcare provider which aligned with the Choosing Wisely questions (χ2 (1)=73.79, p<.001). On average, 67.7% of participants with 'limited' health literacy indicated that they would use video interventions again compared with 55.7% of individuals with 'adequate' health literacy. CONCLUSION: Adults with limited health literacy continue to have lower scores on decision-making outcomes in the context of low value care. Ongoing work is needed to develop and test different intervention formats that support people with lower health literacy to engage in question asking and SDM.
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To address current gaps in health literacy research and practice in low-resource settings, the 'Alfa-Health Program' was designed to improve health literacy in older adults who live in a community dwelling in a socioeconomically disadvantaged community in North-East Brazil. In this longitudinal qualitative study, participants were interviewed before and after participating in the group-based program that was delivered November 2017 to December 2017 in the Primary Care Health Unit. Semi-structured interviews were guided by a previously validated health literacy instrument, translated and adapted for use in Brazil. Data was analyzed using Framework analysis. Of the 21 participants, the majority were age 60 to 69 years with a median of 4-years of school education. Our analysis identified self-reported improvements in health knowledge, behaviors, and skills that matched program content and indicated that participants were supported to manage their health conditions more autonomously. Other themes reflect the distributed nature of health literacy and the potential for group-based health literacy programs to facilitate feelings of social support and cohesion through co-learning. However, age-related deficits in memory and external and structural factors remained important barriers to program participation. This study provides insight into developing health literacy in low-resource settings with older adults, where health literacy is compounded by social determinants and cognitive and sensory changes that contribute to health disparities. Although the targeted Alfa Health Program addresses calls to ensure that priority is proportionate to need by reaching and engaging population groups who are disproportionately affected by low health literacy, further work is needed to adapt the program for people who are unable to read or write. [HLRP: Health Literacy Research and Practice. 2024;8(3):e140-e150.].
PLAIN LANGUAGE SUMMARY: Our team developed a health literacy program for older adults living in Brazil. We explored the impact of the program by interviewing participants before and after the program. Participants reported improvements in health knowledge, behaviors, and skills and reflected on feelings of social support that they received from the program. However, difficulties with memory and challenges getting to the program were important barriers to participation.
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Alfabetización en Salud , Vida Independiente , Investigación Cualitativa , Humanos , Alfabetización en Salud/estadística & datos numéricos , Alfabetización en Salud/métodos , Anciano , Brasil , Femenino , Masculino , Persona de Mediana Edad , Vida Independiente/estadística & datos numéricos , Estudios Longitudinales , Conocimientos, Actitudes y Práctica en Salud , Evaluación de Programas y Proyectos de Salud/métodos , Entrevistas como Asunto/métodosAsunto(s)
Alfabetización en Salud , Aprendizaje , Alfabetización en Salud/métodos , Humanos , AdultoRESUMEN
Allergic rhinitis (AR) is a chronic respiratory condition that internationally continues to be burdensome and impacts quality of life. Despite availability of medicines and guidelines for healthcare providers for the optimal management of AR, optimisation of its management in the community continues to be elusive. The reasons for this are multi-faceted and include both environmental and healthcare related factors. One factor that we can no longer ignore is that AR management is no longer limited to the domain of healthcare provider and that people with AR make their own choices when choosing how to manage their condition, without seeking advice from a health care provider. We must build a bridge between healthcare provider knowledge and guidelines and patient decision-making. With this commentary, we propose that a shared decision-making approach between healthcare professionals and people with AR be developed and promoted, with a focus on patient health literacy. As custodians of AR knowledge, we have a responsibility to ensure it is accessible to those that matter most-the people with AR.
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BACKGROUND: Despite widespread use, there are few studies evaluating the consumer Choosing Wisely questions. METHODS: We evaluated the impact of the Choosing Wisely questions on consumers' decision-making outcomes. Adults living in Australia were presented with a hypothetical low-value care scenario. Using a 2×2×2 between-subjects factorial design, they were randomized to either the Choosing Wisely questions ("Questions"), a shared decision-making (SDM) preparation video ("Video"), both interventions, or control (no intervention). Primary outcomes were 1) self-efficacy to ask questions and be involved in decision-making and 2) intention to engage in SDM. RESULTS: A total of 1,439 participants (45.6% with "inadequate" health literacy) were eligible and included in the analysis. Intention to engage in SDM was higher in people randomized to the Video (mean difference [MD] = 0.24 [scale 0-6], 95% confidence interval [CI]: 0.14, 0.35), Questions (MD = 0.12, 95% CI: 0.01, 0.22), and both interventions (MD = 0.33, 95% CI: 0.23-0.44, P < 0.001, d = 0.28) compared with control. Combining interventions had a greater impact than presenting the Questions alone (MD = 0.22, 95% CI: 0.11, 0.32; P < 0.001). Those who received the Video or both interventions reported lower intention to follow the low-value treatment plan without further questioning (all P < 0.05) and more positive attitudes toward SDM (all P < 0.05) compared with control. Intervention acceptability was high in all study arms (>80%), but proactive access was low (1.7%-20.8%). Compared with control, participants who received one or both interventions asked more questions that mapped to the Choosing Wisely questions (all P < .001). There were no main effects of either intervention on self-efficacy or knowledge. CONCLUSIONS: The Choosing Wisely questions and a video to promote SDM may improve intention to engage in SDM and support patients in identifying questions that align with the Choosing Wisely campaign (with some additional benefits of the video intervention). TRIAL REGISTRATION: ANZCTR376477. HIGHLIGHTS: We conducted a randomized controlled trial online with adults living in Australia to test the effectiveness of the consumer Choosing Wisely questions and a shared decision-making (SDM) preparation video.Both interventions improved intention to engage in SDM and supported participants to identify questions that align with the Choosing Wisely campaign.There were some additional benefits of the Video intervention in reducing willingness to accept low-value treatment for low-back pain without asking questions; however, neither intervention changed participants' self-efficacy to ask questions and be involved in decision-making nor affected perceptions of preparedness to engage in SDM or knowledge of rights to be involved in health care decision-making.The simple, low-cost nature of the interventions may make them appropriate for implementation within a suite of approaches to address low-value care at a population level.
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Toma de Decisiones Conjunta , Alfabetización en Salud , Adulto , Humanos , Participación del Paciente , Australia , Intención , Toma de DecisionesRESUMEN
Health literacy is an important aspect of equitable, safe, and high-quality care. For organizations implementing health literacy initiatives, using 'change champions' appears to be a promising strategy. This systematic review aimed to identify the empirical and conceptual research that exists about health literacy champions. We conducted the systematic literature search using MEDLINE, Embase, CINAHL, Scopus, and PubMed, with additional studies identified by searching references and citations of included studies and reviews of organizational health literacy. Seventeen articles were included in the final review (case studies, n = 9; qualitative research, n = 4; quasi-experimental, n = 2; opinion articles without case studies, n = 2). Using JBI critical appraisal tools, most articles had a high risk of bias. Often champions were not the focus of the article. Champions included staff across frontline, management, and executive levels. Only five studies described training for champions. Key champion activities related to either (i) increasing organizational awareness and commitment to health literacy, or (ii) influencing organizational strategic and operational planning. The most common output was ensuring that the organization's health information materials met health literacy guidelines. Articles recommended engaging multiple champions at varying levels within the organization, including the executive level. Limited funding and resources were key barriers. Two of four articles reported positive impacts of champions on implementation of health literacy initiatives. Overall, few of the articles described health literacy champions in adequate detail. More comprehensive reporting on this implementation strategy and further experimental and process evaluation research are needed to progress this area of research. This systematic review was registered with PROSPERO (CRD42022348816).
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Alfabetización en Salud , Humanos , ActitudRESUMEN
Objective: The Sydney Health Literacy Lab (SHeLL) Editor is an online text-editing tool that provides real-time assessment and feedback on written health information (assesses grade reading score, complex language, passive voice). This study aimed to explore how the design could be further enhanced to help health information providers interpret and act on automated feedback. Methods: The prototype was iteratively refined across four rounds of user-testing with health services staff (N = 20). Participants took part in online interviews and a brief follow-up survey using validated usability scales (System Usability Scale, Technology Acceptance Model). After each round, Yardley's (2021) optimisation criteria guided which changes would be implemented. Results: Participants rated the Editor as having adequate usability (M = 82.8 out of 100, SD = 13.5). Most modifications sought to reduce information overload (e.g. simplifying instructions for new users) or make feedback motivating and actionable (e.g. using frequent incremental feedback to highlight changes to the text altered assessment scores). Conclusion: terative user-testing was critical to balancing academic values and the practical needs of the Editor's target users. The final version emphasises actionable real-time feedback and not just assessment. Innovation: The Editor is a new tool that will help health information providers apply health literacy principles to written text.
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Optimal patient care is directed by clinical practice guidelines, with emphasis on shared decision-making. However, guidelines-and interventions to support their implementation-often do not reflect the needs of ethnic minorities, who experience inequities in chronic kidney disease (CKD) prevalence and outcomes. This review aims to describe what interventions exist to promote decision-making, self-management and/or health literacy for ethnic-minority people living with CKD, describe intervention development and/or adaptation processes, and explore the impact on patient outcomes. Six databases were searched (MEDLINE, PsychINFO, Scopus, EMBASE, CINAHL, InformitOnline) and two reviewers independently extracted study data and assessed risk of bias. Twelve studies (n = 291 participants), conducted in six countries and targeting nine distinct ethnic-minority groups, were included. Intervention strategies consisted of: (i) face-to-face education/skills training (three studies, n = 160), (ii) patient education materials (two studies, n = unspecified), (iii) Cultural Health Liaison Officer (six studies, n = 106) or (iv) increasing access to healthcare (three studies, n = 25). There was limited description of cultural targeting/tailoring. Where written information was translated into languages other than English, the approach was exact translation without other cultural adaptation. Few studies reported on community-based research approaches, intervention adaptations requiring limited or no literacy (e.g. infographics; photographs and interviews with local community members) and the inclusion of Cultural Health Liaison Officer as part of intervention design. No community-based interventions were evaluated for their impact on clinical or psychosocial outcomes. All interventions conducted in the hospital settings reported favourable outcomes (e.g. reduction in blood pressure) compared with routine care but were limited by methodological issues.
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Universal access to health information is a human right and essential to achieving universal health coverage and the other health-related targets of the sustainable development goals. The COVID-19 pandemic has further highlighted the importance of trustworthy sources of health information that are accessible to all people, easily understood and acted on. WHO has developed Your life, your health: Tips and information for health and wellbeing, as a new digital resource for the general public which makes trustworthy health information understandable, accessible and actionable. It provides basic information on important topics, skills and rights related to health and well-being. For those who want to learn more, in-depth information can be accessed through links to WHO videos, infographics and fact sheets. Towards ensuring access to universal health information, this resource was developed using a structured method to: (1) synthesise evidence-based guidance, prioritising public-oriented content, including related rights and skills; (2) develop messages and graphics to be accessible, understandable and actionable for all people based on health literacy principles; (3) engage with experts and other stakeholders to refine messages and message delivery; (4) build a digital resource and test content to obtain feedback from a range of potential users and (5) adapt and co-develop the resource based on feedback and new evidence going forward. As with all WHO global information resources, Your life, your health can be adapted to different contexts. We invite feedback on how the resource can be used, refined and further co-developed to meet people's health information needs.
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Terapia de Aceptación y Compromiso , COVID-19 , Alfabetización en Salud , Humanos , Pandemias , Cobertura Universal del Seguro de SaludRESUMEN
Improving organisational health literacy ensures people can navigate, understand and use essential health information and services. However, systematic reviews have identified limited evidence for practical approaches to implementing such organisational change, particularly at a national level. This study aimed to (a) investigate the approach taken by an Australian national diabetes organisation-Diabetes Australia, as the administrator of the National Diabetes Services Scheme (NDSS)-to improve organisational health literacy over a 15-year-period and (b) examine the impact of organisational changes on the health literacy demands of health information. We performed an environmental scan, examining the websites of the NDSS, Diabetes Australia and the Australian government for reports and position statements describing organisational health literacy policies and practices between 2006 and 2021. The Patient Education Materials Assessment Tool (PEMAT) was applied to consecutively published NDSS diabetes self-care fact sheets (n = 20) to assess changes in the health literacy demands (understandability and actionability) of these fact sheets over the same period. We identified nine policies resulting in 24 health literacy practice changes or projects between 2006 and 2021, applied using a streamlined incremental approach and group reflexivity. The incremental approach focused on (1) increasing audience reach, (2) consistency and branding, (3) person-centred language and (4) the understandability and actionability of health information. The PEMAT scores of fact sheets improved between 2006 and 2021 for understandability (53% to 79%) and actionability (43% to 82%). Diabetes Australia's information development process leveraging national policies, employing an incremental approach and group reflexivity has improved the health literacy demands of diabetes information and serves as a template for other organisations seeking to improve their organisational health literacy.
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Diabetes Mellitus , Alfabetización en Salud , Humanos , Alfabetización en Salud/métodos , Australia , Política de Salud , Cognición , Diabetes Mellitus/prevención & controlRESUMEN
BACKGROUND: Health information is less effective when it does not meet the health literacy needs of its consumers. For health organisations, assessing the appropriateness of their existing health information resources is a key step to addressing this issue. This study describes novel methods for a consumer-centred large-scale health literacy audit of existing resources and reflects on opportunities to further refine the method. METHODS: This audit focused on resources developed by NPS MedicineWise, an Australian not-for-profit that promotes safe and informed use of medicines. The audit comprised 4 stages, with consumers engaged at each stage: 1) Select a sample of resources for assessment; 2) Assess the sample using subjective (Patient Education Materials Assessment Tool) and objective (Sydney Health Literacy Lab Health Literacy Editor) assessment tools; 3) Review audit findings through workshops and identify priority areas for future work; 4) Reflect and gather feedback on the audit process via interviews. RESULTS: Of 147 resources, consumers selected 49 for detailed assessment that covered a range of health topics, health literacy skills, and formats, and which had varied web usage. Overall, 42 resources (85.7%) were assessed as easy to understand, but only 26 (53.1%) as easy to act on. A typical text was written at a grade 12 reading level and used the passive voice 6 times. About one in five words in a typical text were considered complex (19%). Workshops identified three key areas for action: make resources easier to understand and act on; consider the readers' context, needs, and skills; and improve inclusiveness and representation. Interviews with workshop attendees highlighted that audit methods could be further improved by setting clear expectations about the project rationale, objectives, and consumer roles; providing consumers with a simpler subjective health literacy assessment tool, and addressing issues related to diverse representation. CONCLUSIONS: This audit yielded valuable consumer-centred priorities for improving organisational health literacy with regards to updating a large existing database of health information resources. We also identified important opportunities to further refine the process. Study findings provide valuable practical insights that can inform organisational health actions for the upcoming Australian National Health Literacy Strategy.
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Alfabetización en Salud , Humanos , Australia , Atención Dirigida al PacienteRESUMEN
Producing health information that people can easily understand is challenging and time-consuming. Existing guidance is often subjective and lacks specificity. With advances in software that reads and analyzes text, there is an opportunity to develop tools that provide objective, specific, and automated guidance on the complexity of health information. This paper outlines the development of the SHeLL (Sydney Health Literacy Lab) Health Literacy Editor, an automated tool to facilitate the implementation of health literacy guidelines for the production of easy-to-read written health information. Target users were any person or organization that develops consumer-facing education materials, with or without prior experience with health literacy concepts. Anticipated users included health professionals, staff, and government and nongovernment agencies. To develop this tool, existing health literacy and relevant writing guidelines were collated. Items amenable to programmable automated assessment were incorporated into the Editor. A set of natural language processing methods were also adapted for use in the SHeLL Editor, though the approach was primarily procedural (rule-based). As a result of this process, the Editor comprises 6 assessments: readability (school grade reading score calculated using the Simple Measure of Gobbledygook (SMOG)), complex language (percentage of the text that contains public health thesaurus entries, words that are uncommon in English, or acronyms), passive voice, text structure (eg, use of long paragraphs), lexical density and diversity, and person-centered language. These are presented as global scores, with additional, more specific feedback flagged in the text itself. Feedback is provided in real-time so that users can iteratively revise and improve the text. The design also includes a "text preparation" mode, which allows users to quickly make adjustments to ensure accurate calculation of readability. A hierarchy of assessments also helps users prioritize the most important feedback. Lastly, the Editor has a function that exports the analysis and revised text. The SHeLL Health Literacy Editor is a new tool that can help improve the quality and safety of written health information. It provides objective, immediate feedback on a range of factors, complementing readability with other less widely used but important objective assessments such as complex and person-centered language. It can be used as a scalable intervention to support the uptake of health literacy guidelines by health services and providers of health information. This early prototype can be further refined by expanding the thesaurus and leveraging new machine learning methods for assessing the complexity of the written text. User-testing with health professionals is needed before evaluating the Editor's ability to improve the health literacy of written health information and evaluating its implementation into existing Australian health services.
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BACKGROUND: Health literacy interventions and research outcomes are not routinely or systematically implemented within healthcare systems. Co-creation with stakeholders is a potential vehicle through which to accelerate and scale up the implementation of innovation from research. METHODS: This narrative case study describes an example of the application of a co-creation approach to improve health literacy in an Australian public health system that provides hospital and community health services to one million people from socioeconomically and culturally diverse backgrounds. We provide a detailed overview of the value co-creation stages and strategies used to build a practical and sustainable working relationship between a University-based academic research group and the local health district focussed on improving health literacy. RESULTS: Insights from our experience over a 5-year period informed the development of a revised model of co-creation. The model incorporates a practical focus on the structural enablers of co-creation, including the development of a Community of Practice, co-created strategic direction and shared management systems. The model also includes a spectrum of partnership modalities (spanning relationship-building, partnering and co-creating), acknowledging the evolving nature of research partnerships and reinforcing the flexibility and commitment required to achieve meaningful co-creation in research. Four key facilitators of health literacy co-creation are identified: (i) local champions, (ii) co-generated resources, (iii) evolving capability and understanding and (iv) increasing trust and partnership synergy. CONCLUSION: Our case study and co-creation model provide insights into mechanisms to create effective and collaborative ways of working in health literacy which may be transferable to other health fields in Australia and beyond. PATIENT AND PUBLIC CONTRIBUTION: Our co-creation approach brought together a community of practice of consumers, healthcare professionals and researchers as equal partners.
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Alfabetización en Salud , Humanos , Australia , Servicios de Salud Comunitaria , Servicios de Salud , HospitalesRESUMEN
BACKGROUND: Plain language summaries (PLSs) are intended for a non-expert audience in order to make health research accessible and understandable to the public. This is important because most research is written with jargon and at a high reading level. However, there is a high degree of variability in the instructions for writing PLSs, which may impede their usefulness as a tool for communicating health research to the public. OBJECTIVE: The aim of this scoping review was to conduct a detailed analysis of the author instructions for PLSs provided by leading biomedical and health journals. METHOD: We screened 534 health journals covering 11 categories selected from the InCites Journal Citation Reports linked to the top 10 non-communicable diseases. We included journals published in English that recommended the inclusion of a PLS (as defined by the National Institute for Health Research) and provided authors with text-based instructions on how it should be written. Two independent reviewers extracted data pertaining to common elements identified in author instructions, such as word count/PLS length, content, structure, purpose, wording to support plain language, and the use of jargon, acronyms and abbreviations. Other aspects of PLSs were recorded, such as the label used (e.g., plain language summary, lay summary, and patient summary), journal publisher, consumer involvement and whether the PLS is optional or mandatory. We recorded the frequency of each element and qualitative details of specific instructions. A consumer representative provided ongoing and iterative feedback on the methods, results, and reporting of this study RESULTS: Despite reviewing 534 journals across 10 non-communicable disease areas and 11 journal categories, we found only 27 (5.1%) contained text-based instructions for PLS. Of the 27 journals included in this review, most (70%) did not require a PLS. Approximately 70% of journals with PLS instructions included advice about the use of jargon, abbreviations, and acronyms. Only one journal recommended the use of a readability tool, however five noted that the reading level of the audience or readability of the PLS should be considered. Author instructions were highly heterogeneous between journals. There was inconsistency regarding the word count/PLS length (e.g., between 100 and 850 words), structure (e.g., paragraphs or bullet points), and varying levels of detail for other elements in the instructions. Although only one journal recommended consumer involvement in the development of PLSs, many recommended authors consult those who are not an expert in their field to review their summary prior to submission. CONCLUSION: The development of consistent author instructions could enhance the effectiveness and use of PLSs. Such instructions should be developed with consumers to ensure they met the needs of a lay non-expert audience.
Plain language summaries (PLSs) are short summaries of research articles written in clear, easy-to-understand language. This makes them a useful way of getting health research to a non-expert reader. Many journals suggest authors write a PLS with their article, but the instructions for them vary from journal to journal. The aim of this study was to review the author instructions for writing PLSs from health journals. We looked at 534 journals and only found 27 (5.1%) had a PLS aimed at a lay reader. We looked at the author instructions from these 27 journals and noted common details of a PLS. For example, we checked word count/PLS length, content, structure, and wording. We also recorded the label used, publisher and whether the PLS was required or not. We found most (70%) journals did not require a PLS. The instructions were different from journal to journal. For example, word count/PLS length ranged from 100 to 850 words and the suggested structure was a mix of paragraph format and bullet points. About 70% of journals gave advice about the use of jargon, abbreviations and acronyms. Only one journal suggested the use of a readability tool, but five thought the reading level of the reader or readability of the PLS was important. Only one journal suggested consumers be involved in writing a PLS, however many suggested the PLSs be checked by someone who is not an expert in the field. PLSs could be improved with help from consumers to make instructions that are more standard.
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Publicaciones Periódicas como Asunto , Humanos , Lenguaje , Escritura , ComprensiónRESUMEN
BACKGROUND: To investigate whether culturally and linguistically diverse (CALD) communities in Western Sydney have experienced any positive effects during the COVID-19 pandemic, and if so, what these were. METHODS: A cross-sectional survey with ten language groups was conducted from 21st March to 9th July 2021 in Sydney, Australia. Participants were recruited through bilingual multicultural health staff and health care interpreter service staff and answered a question, 'In your life, have you experienced any positive effects from the COVID-19 pandemic?' Differences were explored by demographic variables. Free-text responses were thematically coded using the Content Analysis method. RESULTS: 707 people completed the survey, aged 18 to >70, 49% males and 51% females. Only 161 (23%) of those surveyed reported any positive impacts. There were significant differences in the proportion of those who reported positives based on age (p = 0.004), gender (p = 0.013), language (p = 0.003), health literacy (p = 0.014), English language proficiency (p = 0.003), education (p = <0.001) and whether participants had children less than 18 years at home (p = 0.001). Content Analysis of open-ended responses showed that, of those that did report positives, the top themes were 'Family time' (44%), 'Improved self-care' (31%) and, 'Greater connection with others' (17%). DISCUSSION: Few surveyed participants reported finding any positives stemming from the COVID-19 pandemic. This finding is in stark contrast to related research in Australia with participants whose native language is English in which many more people experienced positives. The needs of people from CALD backgrounds must inform future responses to community crises to facilitate an equitable effect of any collateral positives that may arise.
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COVID-19 , Pandemias , Masculino , Femenino , Niño , Humanos , Estudios Transversales , COVID-19/epidemiología , Diversidad Cultural , Australia/epidemiologíaRESUMEN
This cross-sectional study examines the variability of readability scores across widely used online calculators.
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Comprensión , Alfabetización en Salud , HumanosRESUMEN
This study aimed to provide insight and learnings from Australian general practitioners in facilitating positive interactions with refugee and asylum seeker patients and the role they play in helping those community members engage with healthcare. We conducted semi-structured individual remote interviews with 12 general practitioners (GPs) who worked in areas with high refugee and migrant populations. Interview transcripts were coded inductively and deductively, based on the research questions, using Thematic Analysis. Extensive debriefing and discussion took place within the research team throughout data collection and analysis. Creating a culturally safe environment was an initial step taken by GPs to minimise the inherent power imbalance, in addition to applying the principles of trauma-informed care (TIC) to appropriately listen and respond to their patients' needs and individual social circumstances. GPs at times were involved in using their role to advocate on behalf of their patient and played a key role in helping build their patients' health systems literacy. This study highlights the important role that GPs play in advocating and engaging refugee and asylum seeker patients, as well as helping them navigate the healthcare system. Whilst GPs practice can be made more efficient through experience and time; to deliver the care required GPs need to provide care in response to the individual's capacity and social circumstances. Enabling time and the application of the principles of TIC and cultural safety may allow for GPs to provide the quality of care that is needed in supporting patients from refugee and asylum seeker backgrounds.
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Refugiados , Humanos , Accesibilidad a los Servicios de Salud , Australia , Investigación Cualitativa , Atención Primaria de SaludRESUMEN
Communicating health information quickly and effectively with diverse populations has been essential during the COVID-19 pandemic. However, health communication practices are often top down and poorly designed to rapidly meet diverse health literacy, cultural and contextual needs of the population. This paper describes a research and practice partnership focused on health literacy, multicultural health, and community engagement to address COVID-19 in Australia. The partnership became influential in the local and state-based response to the COVID-19 Delta outbreak in Western and South Western Sydney, an area of high cultural and socioeconomic diversity. Our approach, bringing together academic researchers and frontline health staff working with multicultural populations using a model of co-design and community engagement and action via the "4 M model," has been successful. It supported the Western Sydney community to achieve some of the highest vaccination rates in the world (>90%). There is an ongoing need to engage respectfully and responsively with communities to address specific challenges that they face and tailor communications and supports accordingly for successful pandemic management. Combining co-designed empirical research with community engagement and action ensures needs are robustly identified and can be appropriately addressed to support an effective public health response.
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COVID-19 , Alfabetización en Salud , Humanos , COVID-19/epidemiología , COVID-19/prevención & control , Pandemias/prevención & control , Diversidad Cultural , Australia/epidemiologíaRESUMEN
BACKGROUND: We developed a smartphone app-the SUCCESS (Supporting Culturally and Linguistically Diverse CKD Patients to Engage in Shared Decision-Making Successfully) app-to support Australian adults with kidney failure undertaking dialysis to actively participate in self-management and decision-making. The content of the SUCCESS app was informed by a theoretical model of health literacy that recognizes the importance of reducing the complexity of health information as well as providing skills necessary to access, understand, and act on this information. OBJECTIVE: The purpose of this study is to investigate the efficacy of the SUCCESS app intervention. METHODS: We designed a multicenter pragmatic randomized controlled trial to compare the SUCCESS app plus usual care (intervention) to usual care alone (control). A total of 384 participants receiving in-center or home-based hemodialysis or peritoneal dialysis will be recruited from six local health districts in the Greater Sydney region, New South Wales, Australia. To avoid intervention contamination, a pragmatic randomization approach will be used for participants undergoing in-center dialysis, in which randomization will be based on the days they receive hemodialysis and by center (ie, Monday, Wednesday, and Friday or Tuesday, Thursday, and Saturday). Participants undergoing home-based dialysis will be individually randomized centrally using simple randomization and two stratification factors: language spoken at home and research site. Consenting participants will be invited to use the SUCCESS app for 12 months. The primary endpoints, which will be assessed after 3, 6, and 12 months of app usage, are health literacy skills, evaluated using the Health Literacy Questionnaire; decision self-efficacy, evaluated using the Decision Self-Efficacy Scale; and rates of unscheduled health encounters. Secondary outcomes include patient-reported outcomes (ie, quality of life, evaluated with the 5-level EQ-5D; knowledge; confidence; health behavior; and self-management) and clinical outcomes (ie, symptom burden, evaluated with the Palliative care Outcome Scale-Renal; nutritional status, evaluated with the Patient-Generated Subjective Global Assessment; and intradialytic weight gain). App engagement will be determined via app analytics. All analyses will be undertaken using an intention-to-treat approach comparing the intervention and usual care arms. RESULTS: The study has been approved by Nepean Blue Mountains Human Research Ethics Committee (2020/ETH00910) and recruitment has begun at nine sites. We expect to finalize data collection by 2023 and publish the manuscript by 2024. CONCLUSIONS: Enhancing health literacy skills for patients undergoing hemodialysis is an important endeavor, given the association between poor health literacy and poor health outcomes, especially among culturally diverse groups. The findings from this trial will be published in peer-reviewed journals and disseminated at conferences, and updates will be shared with partners, including participating local health districts, Kidney Health Australia, and consumers. The SUCCESS app will continue to be available to all participants following trial completion. TRIAL REGISTRATION: Australia New Zealand Clinical Trials Registry (ANZCTR) ACTRN12621000235808; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380754&isReview=true. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/39909.