ORCID Profile
0000-0001-6106-6298
Current Organisations
University of Liverpool
,
University of Sydney
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Health equity | Public health | Health promotion
Publisher: Royal Society of Chemistry (RSC)
Date: 2019
DOI: 10.1039/C8RE00211H
Abstract: A continuous-flow platform enables rapid kinetic profiling and accelerated production of block copolymer nano-objects via RAFT aqueous dispersion polymerization.
Publisher: Elsevier BV
Date: 10-2015
DOI: 10.1016/J.PEC.2015.07.023
Abstract: Given the scarcity of shared decision-making (SDM) interventions for adults with low literacy, we created a SDM training program tailored to this population to be delivered in adult education settings. Formative evaluation during program development included a review of the problem and previous efforts to address it, qualitative interviews with the target population, program planning and field testing. A comprehensive SDM training program was developed incorporating core SDM elements. The program aimed to improve students' understanding of SDM and to provide them with the necessary skills (understanding probabilistic risks and benefits, personal values and preferences) and self-efficacy to use an existing set of questions (the AskShareKnow questions) as a means to engage in SDM during healthcare interactions. There is an ethical imperative to develop SDM interventions for adults with lower literacy. Generic training programs delivered direct-to-consumers in adult education settings offer promise in a national and international environment where too few initiatives exist. Formative evaluation of the program offers practical insights into developing consumer-focused SDM training. The content of the program can be used as a guide for future efforts to engage consumers in SDM.
Publisher: BMJ
Date: 05-2022
DOI: 10.1136/BMJOPEN-2021-058323
Abstract: To explore the psychological, social and financial outcomes of COVID-19—and the sociodemographic predictors of those outcomes—among culturally and linguistically erse communities in Sydney, Australia. Cross-sectional survey informed by the Framework for Culturally Competent Health Research conducted between March and July 2021. Participants who primarily speak a language other than English at home were recruited from Greater Western Sydney, New South Wales. 708 community members (mean age: 45.4 years (range 18–91)). 88% (n=622) were born outside of Australia, 31% (n=220) did not speak English well or at all, and 41% (n=290) had inadequate health literacy. Thirteen items regarding COVID-19-related psychological, social and financial outcomes were adapted from validated scales, previous surveys or co-designed in partnership with Multicultural Health and interpreter service staff. Logistic regression models (using poststratification weighted frequencies) were used to identify sociodemographic predictors of outcomes. Surveys were available in English or translated (11 languages). In this analysis, conducted prior to the 2021 COVID-19 outbreak in Sydney, 25% of the s le reported feeling nervous or stressed most/all of the time and 22% felt lonely or alone most/all of the time. A quarter of participants reported negative impacts on their spousal relationships as a result of COVID-19 and most parents reported that their children were less active (64%), had more screen time (63%) and were finding school harder (45%). Mean financial burden was 2.9/5 (95% CI 2.8 to 2.9). Regression analyses consistently showed more negative outcomes for those with comorbidities and differences across language groups. Culturally and linguistically erse communities experience significant psychological, social and financial impacts of COVID-19. A whole-of-government approach is needed to support rapid co-design of culturally safe support packages in response to COVID-19 and other national health emergencies, tailored appropriately to specific language groups and accounting for pre-existing health disparities.
Publisher: Elsevier BV
Date: 03-2022
DOI: 10.1016/J.PEC.2021.05.038
Abstract: To explore clinicians' and women's views and experiences with managing polycystic ovary syndrome (PCOS). Semi-structured interviews with 36 clinicians and 26 women with PCOS. Clinicians were recruited through advertising via relevant professional organisations, snowballing and contacting clinics across Australia. Women with PCOS were recruited through social media advertising. Transcribed audio-recordings were analysed thematically using Framework analysis. Findings across women with PCOS and clinician interviews were organised into three themes. Both women and clinicians experienced 1) challenges with managing PCOS, often stemming from the disparate and wide spectrum of presentations, issues with current treatment options (including limited evidence) and the long-term nature of management. Both spoke about 2) online information about PCOS and alternative treatments, including lack of relevant information and widespread misinformation. 3) Follow-up and continuity of care, where we found notable differences between women's and clinicians' expectations. This is the first study to explore both clinicians' and women's experiences with managing PCOS, illustrating several challenges in managing this heterogeneous condition. Clarifying and addressing patient expectations, providing personalised counselling and information according to PCOS phenotype and a multidisciplinary approach may reduce uncertainty and improve patient-centred care.
Publisher: Cold Spring Harbor Laboratory
Date: 20-10-2021
DOI: 10.1101/2021.10.19.21265230
Abstract: Objective: This study aimed to explore the psychological, social, and financial impacts of COVID-19 on culturally and linguistically erse communities in Australia. Design: Cross-sectional survey informed by the Framework for Culturally Competent Health Research conducted between March and July, 2021. Setting: Participants were recruited from Greater Western Sydney, New South Wales, Australia. Participants: 708 community members who speak a language other than English at home participated (mean age: 45.4years [range 18 to 91] 88% [n=622] born outside of Australia). Outcome measures: Fifteen items regarding impacts of COVID-19, adapted from validated scales, previous surveys or co-designed in partnership with Multicultural Health and interpreter service staff. Logistic regression models (using post-stratification weighted frequencies) identified factors associated with psychological, social, and financial impacts. Surveys were available in English or translated (11 languages). Results: Even prior to the COVID-19 outbreak in Sydney, 25% of the s le reported feeling nervous or stressed most/all of the time and 22% felt lonely or alone most/all of the time. One quarter of participants reported negative impacts on their spousal relationships as a result of COVID-19 and most parents reported that their children were less active (64%), had more screen time (63%), and were finding school harder (45%). Mean financial burden was 2.9/5 (95%CI=2.8 to 2.9). Regression analyses consistently showed distinct impact patterns for different language groups and more negative outcomes for those with comorbidities. Conclusion: Culturally and linguistically erse communities experience significant psychological, social and financial impacts of COVID-19, with distinct impact patterns across language groups. A whole-of-government approach with policy and sustainable infrastructure is needed to co-design innovative, tailored and culturally-safe COVID-19 support packages.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 04-2021
DOI: 10.1161/CIRCOUTCOMES.120.007160
Abstract: Recent US guidelines lowered the threshold for diagnosing hypertension while other international guidelines use alternative/no labels for the same group (blood pressure [BP], /90 mm Hg). We investigated potential benefits and harms of hypertension and high-normal BP labels, compared with control, among people at lower risk of cardiovascular disease. We conducted a randomized experiment using a national s le of Australians (n=1318) 40 to 50 years of age recruited from an online panel. Participants were randomized to 1 of 3 hypothetical scenarios where a general practitioner told them they had a BP reading of 135/85 mm Hg, using either hypertension/high-normal BP/control (general BP description) labels. Participants were then randomized to receive an additional absolute risk description or nothing. Primary outcomes were willingness to change diet and worry. Secondary outcomes included exercise/medication intentions, risk perceptions, and other psychosocial outcomes. There was no difference in willingness to change diet across label groups ( P =0.22). The hypertension label (mean difference [MD], 0.74 [95% CI, 0.41–1.06] P .001) and high-normal BP label (MD, 0.45 [95% CI, 0.12–0.78] P =0.008) had increased worry about cardiovascular disease risk compared with control. There was no evidence that either label increased willingness to exercise ( P =0.80). However, the hypertension (MD, 0.20 [95% CI, 0.04–0.36] P =0.014), but not high-normal label (MD, 0.06 [95% CI, −0.10 to 0.21] P =0.49), increased willingness to accept BP-lowering medication compared with control. Psychosocial differences including lower control, higher risk perceptions, and more negative affect were found for the hypertension and high-normal labels compared with control. Providing absolute risk information decreased willingness to change diet (MD, 0.25 [95% CI, 0.10–0.41] P =0.001) and increase exercise (MD, 0.28 [95% CI, 0.11–0.45] P =0.001) in the hypertension group. Neither hypertension nor high-normal labels motivated participants to change their diet or exercise more than control, but both labels had adverse psychosocial outcomes. Labeling people with systolic BP of 130 to 140 mm Hg, who are otherwise at low risk of cardiovascular disease, may cause harms that outweigh benefit. URL: www.anzctr.org.au/ Unique identifier: ACTRN12618001700224.
Publisher: Wiley
Date: 22-10-2013
DOI: 10.1111/AJCO.12145
Publisher: SAGE Publications
Date: 29-05-2021
DOI: 10.1177/0272989X211011101
Abstract: There is increasing recognition of the importance of addressing health literacy in patient decision aid (PtDA) development. An updated review as part of IPDAS 2.0 examined the extent to which PtDAs are designed to meet the needs of people with low health literacy/socially-disadvantaged populations. Reference lists of Cochrane reviews of randomized controlled trials (RCTs) of PtDAs (2014, 2017, and upcoming 2021 versions). RCTs that assessed the impact of PtDAs on low health literacy or other socially-disadvantaged groups (i.e., ≥50% participants from socially-disadvantaged groups and/or subgroup analysis in socially-disadvantaged group/s). Two researchers independently extracted data into a standardized form including PtDA development and evaluation details. We searched online repositories and emailed authors to access PtDAs to verify grade reading level, understandability, and actionability. Twenty-five of 213 RCTs met the inclusion criteria, illustrating that only 12% of studies addressed the needs of low health literacy or other socially-disadvantaged groups. Grade reading level was calculated in 8 of 25 studies (33%), which is recommended in previous IPDAS guidelines. We accessed and independently assessed 11 PtDAs. None were written at sixth-grade level or below. Ten PtDAs met the recommended threshold for understandability, but only 5 met the recommended threshold for actionability. We also conducted a post hoc subgroup meta-analysis and found that knowledge improvements after receiving a PtDA were greater in studies that reported using strategies to reduce cognitive demand in PtDA development compared with studies that did not (χ 2 = 14.11, P = 0.0002, I 2 = 92.9%). We were unable to access 13 of 24 PtDAs. Conclusions. Greater attention to health literacy and socially-disadvantaged populations is needed in the field of PtDAs to ensure equity in decision support.
Publisher: BMJ
Date: 11-2019
DOI: 10.1136/BMJOPEN-2019-033126
Abstract: Choosing Wisely, an international effort to reduce low value care worldwide, considers communication between clinicians and patients during routine clinical encounters a key mechanism for change. In Australia, Choosing Wisely has developed a 5 Questions resource to facilitate better conversations. The primary aim of this study is to evaluate the impact of the Choosing Wisely Australia 5 Questions resource and a video designed to prepare patients for question-asking and participation in shared decision-making on (a) self-efficacy to ask questions and participate in shared decision-making, (b) intention to participate in shared decision-making and (c) a range of secondary outcomes. The secondary aim of this study is to determine whether participants’ health literacy modifies the effects of the interventions. We will use 2×2×2 between-subjects factorial design (preparation video: yes, no × Choosing Wisely 5 Questions resource: yes, no × health literacy: adequate, inadequate). Participants will be recruited by an online market research company, presented with a hypothetical non-specific low back pain scenario, and randomised to study groups stratified by health literacy. Quantitative primary and secondary outcome data will be analysed as intention-to-treat using appropriate regression models (ie, linear regression for continuous outcomes, logistic regression for dichotomous categorical outcomes). Ethical approval for this study was obtained from the University of Sydney Human Research Ethics Committee (protocol number: 2018/965). The results from this work will be disseminated through peer-reviewed international journals, conferences and updates with collaborating public health bodies. Resources developed for this study will be made available to patients and clinicians following trial completion. This trial has been registered with the Australia New Zealand Clinical Trials Registry (trial number: 376477) and the stage is Pre-results.
Publisher: Cold Spring Harbor Laboratory
Date: 25-10-2021
DOI: 10.1101/2021.10.24.21265451
Abstract: Little is known about COVID-19 information-seeking experiences for culturally and linguistically erse groups in Australia. Participants were recruited using a cross-sectional survey from March 21 to July 9, 2021, translated into 11 languages, and with supporting bilingual staff. Linear regression models identified factors associated with difficulty finding easy-to-understand COVID-19 information. Across 708 participants (88% born overseas, 31% poor English proficiency), difficulty finding easy-to-understand COVID-19 information was rated 4.13 for English materials (95%CI: 3.85 to 4.41) and 4.36 for translated materials (95%CI: 4.07 to 4.66) (1 easy to 10 hard). Participants who were older (p .001), had inadequate health literacy (Mean Difference (MD)=-1.43, 95%CI -2.03 to - 0.82, p .001), or poor English proficiency (MD=-1.9, 95%CI-2.51 to -1.29, p .001) found it harder to find easy-to-understand English-language COVID-19 information. Those who had greater difficulty finding easy-to-understand translated COVID-19 information were younger (p=0.004), had poor English proficiency (MD=-1.61, 95%CI -2.29 to -0.9, p .001), university education (MD=0.77, 95%CI 0.00 to 1.53, p=0.05), and had spent longer living in Australia (p=0.001). They were more likely to rely on friends and family for COVID-19 information (p=0.02). There was significant variation in information-seeking experiences across language groups (p’s .001). Easy-to-understand and accessible COVID-19 information is needed to meet the needs of people in culturally and linguistically erse communities. This approach should involve working alongside these communities to tailor messages and leverage existing communication channels.
Publisher: MDPI AG
Date: 19-12-2019
Abstract: This study assessed the impact of the Chronic Disease Self-Management Program (CDSMP) on different domains of health literacy using a pre-post study design. Participants aged over 16 years and with one or more self-reported chronic diseases were recruited for the CDSMP in western Sydney (a highly erse area of New South Wales, Australia) between October 2014 and September 2018. Health literacy was assessed pre- and immediately post-intervention using the Health Literacy Questionnaire (HLQ), with differences in mean scores for each HLQ domain analysed using paired s le t-tests. A total of 486 participants were recruited into the CDSMP. Of those, 316 (65.0%) completed both pre- and post-intervention surveys and were included in the analysis. The median age of the participants was 68 years, the majority were female (62.5%), and most were born in a country other than Australia (80.6%). There were statistically significant (P 0.001) improvements across all nine domains of the HLQ. This is the first study evaluating the potential impact of the CDSMP on improving different domains of health literacy amongst a erse s le of participants with chronic diseases using a multi-dimensional instrument. The absence of a control population in this study warrants caution when interpreting the results.
Publisher: BMJ
Date: 24-06-2020
DOI: 10.1136/BMJEBM-2019-111210
Abstract: Perceived knowledge gaps in general practice are not well documented but must be understood to ensure relevant and timely evidence for busy general practitioners (GPs) which reflects their erse and changing needs. The aim of this study was to classify the types of questions submitted by Australian GPs to an evidence-based practice information service using established and inductive coding systems. We analysed 126 clinical questions submitted by 53 Australian GPs over a 1.5-year period. Questions were coded using the International Classification of Primary Care (ICPC-2 PLUS) and Ely and colleagues’ generic questions taxonomy by two independent coders. Inductive qualitative content analysis was also used to identify perceived knowledge gaps. Treatment (71%), diagnosis (15%) and epidemiology (9%) were the most common categories of questions. Using the ICPC-2 classification, questions were most commonly coded to the endocrine/metabolic and nutritional chapter heading, followed by general and unspecified, digestive and musculoskeletal. Seventy per cent of all questions related to the need to stay up-to-date with the evidence, or be informed about new tests or treatments (including complementary and alternative therapies). These findings suggest that current guideline formats for common clinical problems may not meet the knowledge demands of GPs and there is gap in access to evidence updates on new tests, treatments and complementary and alternative therapies. Better systems for ‘pulling’ real-time questions from GPs could better inform the ‘push’ of more relevant and timely evidence for use in the clinical encounter.
Publisher: Springer Science and Business Media LLC
Date: 24-03-2202
DOI: 10.1007/S40271-021-00507-1
Abstract: Adjuvant immunotherapy is a new treatment paradigm for adults with resected stage 3 melanoma. However, therapy can lead to long-term adverse health impacts, making immunotherapy decisions difficult. This study aimed to explore patients and their partners' views when considering whether to commence adjuvant immunotherapy. Focus groups and in-depth interviews were conducted among adults with resected stage 3 melanoma and their partners between August 2019 and April 2020. Factors important to adjuvant immunotherapy decision making were explored. Recruitment continued until data saturation, with thematic analysis performed. Thirty-six participants were recruited across two cohorts, including 24 patients (mean age 65 years, 71% male), and 12 partners (mean age 69 years, 75% female). Twenty-two patients (92%) received adjuvant immunotherapy, two (8%) declined. Five patients (21%) ceased treatment early because of toxicity. Five themes about adjuvant immunotherapy were common to all participants: (1) life and death (2) perceived risks and benefits (3) seeking information (4) healthcare team relationship and (5) immunotherapy treatment considerations. Prolonging life was the primary consideration, with secondary concerns about treatment burden, timing, costs and efficacy. This information can be used by clinicians to support melanoma treatment decision making.
Publisher: Cold Spring Harbor Laboratory
Date: 17-03-2023
DOI: 10.1101/2023.03.15.23287331
Abstract: Health literacy is an important aspect of equitable, safe, and high-quality care. For organisations implementing health literacy initiatives, using ‘change ch ions’ appears to be a promising strategy. This systematic review aimed to identify the empirical and conceptual research that exists about health literacy ch ions. We conducted a 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 organisational 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). Most articles had a high risk of bias. Often ch ions were not the focus of the article. Ch ions included staff across frontline, management and executive levels. Only five studies described training for ch ions. Key ch ion activities related to either 1) increasing organisational awareness and commitment to health literacy, or 2) influencing organisational strategic and operational planning. The most common output was ensuring that the organisation’s health information materials met health literacy guidelines. Articles recommended engaging multiple ch ions at varying levels within the organisation, including the executive level. Limited funding and resources were key barriers. Three of five articles reported positive impacts of ch ions on implementation of health literacy initiatives. Few articles described health literacy ch ions 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) Health organisations may want to improve their health literacy practices. Studies suggest that ‘ch ions’ may help bring about change in an organisation. We searched five research databases to find out what research exists about health literacy ch ions. We found seventeen relevant articles. Most had a high risk of bias. Often ch ions were not the focus. Ch ions could be staff across all levels (frontline, management, executive). Only five studies described training. Ch ions had two main types of activities: 1) making staff more aware and committed to health literacy 2) changing organisational strategies and processes. Often this meant making sure that health information met health literacy guidelines. The articles suggested it may be better to have more than one ch ion, at different levels within the organisation, including the executive level. Three of five articles reported that ch ions may have improved health literacy practices. Research does not tell us much about health literacy ch ions or their impact on health literacy practices. We need studies that describe ch ions and their training in detail, and test their impact on health literacy practices at different sites.
Publisher: Cold Spring Harbor Laboratory
Date: 23-10-2021
DOI: 10.1101/2021.10.20.21265299
Abstract: To investigate whether culturally and linguistically erse communities in Western Sydney have experienced any positive effects during the COVID-19 pandemic, and if so, what these were. A cross–sectional survey with ten language groups was conducted from 21 st March to 9 th 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. 707 people completed the survey, aged 18 to , 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= .001) and whether participants had children less than 18 years at home (p=0.001). Reporting of positive impacts ranged from 12% for people aged seventy years or older to 30% for the 30–49-year age group. Reporting of positive impacts for different language groups ranged from 9% to 42%. 18% of men reported positive impacts compared to 27% of women, and 18% of people with inadequate health literacy reported positive impacts compared to 26% with adequate health literacy. 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%). From 21st March to July 9th, 2021, few surveyed participants reported finding any positives because of the COVID–19 pandemic. This finding is in stark contrast to related research in Australia in a population dominated by adults with English as their first language, carried out in June 2020, in which many more people experienced positives. The needs of people from culturally and linguistically erse backgrounds must inform future responses to community crises to facilitate an equitable effect of any collateral positives that may arise.
Publisher: Elsevier BV
Date: 05-2019
DOI: 10.1016/J.PEC.2018.12.001
Abstract: To explore how decisions are made in real-life general practice consultations with older patients (65+ years), and examine how general practitioners (GPs) communicate risk and benefit information and evidence, and integrate patient preferences. Secondary analysis of 20 video-recorded consultations with older patients in Australian primary healthcare settings. Consultations were analysed qualitatively using the Framework method and quantitatively using the Observer OPTION Overall, Observer OPTION We observed a lack of shared decision-making in our primary care study, with little engagement of older patients in decisions about their health. Training and support tools may be needed to enhance the capacity and self-efficacy of providers and older patients to share healthcare decisions.
Publisher: Wiley
Date: 31-10-2019
DOI: 10.1111/AJCO.13263
Publisher: Wiley
Date: 18-02-2022
DOI: 10.1111/HEX.13450
Abstract: Previous research suggests that it would be useful to view health literacy as a set of ‘distributed competencies’, which can be found dispersed through the in idual's social network, rather than an exclusively in idual attribute. However, to date there is no focused exploration of how distributed health literacy has been defined, conceptualized or assessed in the peer‐reviewed literature. This systematic review aimed to explore: (1) definitions and conceptual models of distributed health literacy that are available from the peer‐reviewed literature and (2) how distributed health literacy has been measured in empirical research. We searched MEDLINE, Embase, CINAHL, PsycInfo, Scopus, ERIC and Web of Science using truncated versions of the keywords ‘literacy’ and ‘distributed’ (within five words' distance). We collated the definitions and conceptual models of distributed health literacy, and report on how health literacy has been measured in empirical research studies. Findings related to distributed health literacy from included manuscripts were synthesized using thematic synthesis. Of the 642 studies screened, 10 were included in this systematic review. The majority were empirical manuscripts reporting on qualitative research in one of five countries, with two reviews, one conceptual analysis and one quantitative study. Edwards' definition of distributed health literacy, which emphasizes the health literacy abilities, skills and practices of others that contribute to an in idual's level of health literacy was widely applied in a variety of clinical and geographical settings. However, we did not identify any quantitative instruments which directly measured distributed health literacy. There was significant variability in questions used to explore the concept qualitatively, and discrepancies across studies in regard to (a) what constitutes distributed health literacy and what does not (e.g., general social support), and (b) the relationship between distributed health literacy and other constructs (e.g., public health literacy). Although there is a widely applied definition of distributed health literacy, our review revealed that the research space would benefit from the development of the concept, both theoretically for ex le via conceptual distinctions between distributed health literacy and other types of social support, and empirically for ex le through the development of a quantitative measurement instrument. This paper is a systematic review and did not involve patients or the public.
Publisher: The Sax Institute
Date: 2020
Publisher: BMJ Publishing Group Ltd
Date: 12-2019
Publisher: Wiley
Date: 23-12-2022
DOI: 10.1111/HEX.13411
Abstract: Refugees and asylum seekers arrive in the Australian community with complex health needs and expectations of healthcare systems formed from elsewhere. Navigating the primary healthcare system can be challenging with communication and language barriers. In multicultural societies, this obstacle may be removed by accessing language‐concordant care. Emerging evidence suggests language‐concordance is associated with more positive reports of patient experience. Whether this is true for refugees and asylum seekers and their expectation of markers of quality patient‐centred care (PCC) remains to be explored. This study aimed to explore the expectations around the markers of PCC and the impacts of having language‐concordant care in Australian primary healthcare. We conducted semi‐structured in idual in‐language (Arabic, Dari, and Tamil) remote interviews with 22 refugee and asylum seekers and 9 general practitioners (GPs). 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. Community member expectations of markers of PCC are constantly evolving and adapting based on invisible and visible actions during clinical encounters. Challenges can occur in the clinical encounter when expectations are ‘unsaid’ or unarticulated by both community members and GPs due to the assumption of shared understanding with language concordant care. Expectations of what constitutes satisfactory, quality PCC are dynamic outcomes, which are influenced by prior and current experiences of healthcare. This study highlights the importance of understanding that language concordant care does not always support aligned expectations of the markers of quality PCC between community members and their GP. We recommend that GPs encourage community members to provide explicit descriptions about how their prior experiences have framed their expectations of what characterizes quality PCC. In addition, GPs could develop a collaborative approach, in which they explain their own decision‐making processes in providing PCC to refugees and asylum seekers. Bilingual researchers from multicultural backgrounds and experience working with people from refugee backgrounds were consulted on study design and analysis. This study included in iduals with lived experiences as refugees and asylum seekers and clinicians as participants.
Publisher: The Sax Institute
Date: 2020
DOI: 10.17061/PHRP3012002
Publisher: American Chemical Society (ACS)
Date: 17-02-2021
Publisher: Elsevier BV
Date: 10-2021
Publisher: Informa UK Limited
Date: 03-07-2022
DOI: 10.1080/10810730.2022.2118910
Abstract: Communicating health information quickly and effectively with erse populations has been essential during the COVID-19 pandemic. However, health communication practices are often top down and poorly designed to rapidly meet erse 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 ersity. 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.
Publisher: Elsevier BV
Date: 06-2020
DOI: 10.1016/J.PEC.2020.01.012
Abstract: Existing instruments for assessing health literacy skills in parents have limited scope to inform the design and evaluation of health literacy interventions. In this study we aimed to develop and validate a new performance-based measure of health literacy for Australian parents, the Parenting Plus Skills Index (PPSI). The instrument aimed to assess functional, communicative and critical health literacy skills. The PPSI was developed in three phases: 1) Modified Delphi Expert Panel to provide feedback on 34 initial items 2) Evaluation of psychometric properties of each item using a multidimensional item response theory model in a s le of Australian adults of parenting age (20-44 years) (N = 500) 3) Assessment of subset of items in an independent s le (N = 500). Following the three phases, 13 items were included in the final instrument. Participants scored on average 8.9/13 (69 %). The instrument demonstrated acceptable reliability (r = 0.70) and was significantly correlated with other performance-based health literacy instruments. The PPSI is a validated 13-item performance-based instrument that assesses health literacy skills for parents in an Australian setting. The PPSI fills an important gap in available health literacy instruments that may be useful for facilitating development and evaluation of health literacy interventions.
Publisher: Informa UK Limited
Date: 08-08-2020
DOI: 10.1080/09540121.2019.1653443
Abstract: Erectile dysfunction (ED) is more prevalent among men with HIV than HIV negative men. This study systematically reviewed quantitative studies published since 1997 which s led men with HIV to examine factors associated with ED. Searches on PsycINFO, Medline, Scopus, Embase and Cinahl databases produced 5552 records, and 14 studies met inclusion criteria. Two researchers independently extracted data and assessed the quality studies using standardized criteria. Age and depression were found to be significantly associated with ED. Importantly, factors unique to HIV emerged as consistently significant across studies, including time on antiretroviral medication and protease inhibitor medication use. However, these relate to organic cause factors associated with ED only. Only four studies examined social factors with inconsistent findings. There was a paucity of research related to psychosocial factors associated with ED. This systematic review used a broad search strategy employed across multiple data-bases, however, it is limited by the over-representation of treatment centre based studies conducted in high-income nations. Future research should examine psychosocial factors, such as undue fear of transmission of HIV or fear of rejection by a sexual partner and develop a psychosocial model of sexual difficulties with HIV, from which casual hypotheses can be derived and tested.
Publisher: Elsevier BV
Date: 04-2021
Publisher: Informa UK Limited
Date: 22-11-2020
DOI: 10.1080/00224499.2019.1689379
Abstract: Sexual difficulties, experienced by half of the people living with HIV (PLWH), not only affect quality of life but have been associated with lower adherence to antiretroviral medication. This systematic review synthesizes studies published since 1997 which used statistical methods to investigate factors associated with general sexual functioning or sexual satisfaction of PLWH. We searched Medline, PsycINFO, Embase, Cinahl and Scopus with terms: HIV AND sexual dysfunction AND factors. Of 5552 records, 26 studies met selection criteria. Twenty-one studies on general sexual function, and five studies on sexual satisfaction. Two researchers separately extracted data and applied standardized quality assessment criteria. (Registration: CRD42018094146.) Regarding general sexual dysfunction, older age, general physical health, depression, body image and psychological distress were the most relevant factors. There was inconsistent evidence for: CD4, viral load, HIV symptom severity, HIV disease progression and time since diagnosis. From limited available evidence on sexual satisfaction, age, unemployment, and psychosocial factors were significant. Overall, anxiety and relational factors were under-researched, treatment center studies were over-represented and non-validated measurement of outcomes was common. Future research is required to build theoretical models of sexual well-being specific to PLWH to guide effective research and intervention to promote sexual quality of life of PLWH.
Publisher: Elsevier BV
Date: 12-2023
Publisher: Springer Science and Business Media LLC
Date: 27-05-2016
Publisher: Elsevier BV
Date: 03-2021
Publisher: SLACK, Inc.
Date: 07-2019
DOI: 10.3928/24748307-20190402-01
Abstract: Adult education targeting health literacy (HL) may bring added value in the form of improved health. This study evaluated the effects of a HL program as part of an adult education curriculum for adults with low literacy and numeracy. This was a partial-cluster randomized controlled trial among 308 adults enrolled in basic education programs in Australia. Of the 308 participants, 141 (46%) were randomized to either the standard program (language, literacy, and numeracy [LLN]), or the HL intervention (LLN with embedded health content) the remainder ( n = 167) were allocated to standard intervention programs by the education provider at the class level. The main outcomes were functional HL, self-reported confidence, patient activation, generic HL (ie, HLQ, health knowledge, and self-reported health behavior). Data were collected at baseline, immediately after, and at 6 months post-intervention. Of the 308 participants, 71% had limited literacy and 60% spoke a language other than English at home. Both interventions benefited participants, with improvements from baseline to immediate follow up on in idual-level functional HL (e.g., reading a thermometer HL group 18.4% vs. standard group 7.2% p = .001), confidence (HL group 0.34 vs. standard group 0.06 p = .014) and health literacy questionnaire (HLQ) subscales. At 6 months, improvements in confidence ( p .001) and some HLQ measures were retained. A consistent pattern of increased improvement in the HL program was observed compared to the standard program, although only some measures reached statistical significance: reading a food label (HL group 6.03/10 correct vs. standard group 5.49/10 correct p = .022) confidence ( p = .008) ability to actively manage health (HLQ) ( p = .017), and health knowledge at 6 months (HL group 68% vs. standard group 60% correct, p = .052). HL participants reported being more likely to share course information and rated the program more useful to understand their health. Improving language, literacy, and numeracy generally has potential public health benefits that are retained at 6 months. Integrating health content adds further value to adult basic learning, is feasible, and potentially scalable. [ HLRP: Health Literacy Research and Practice . 2019 (Suppl.):S42–S57.] We compared the effect of an adult education-based health literacy (HL) program versus a standard language, literacy, and numeracy program on students' HL skills and psychosocial outcomes. Although students in both trial arms improved their skills, students in the HL program had better outcomes with higher HL, greater confidence, and higher health knowledge scores at 6 months.
Publisher: Wiley
Date: 27-09-2021
DOI: 10.5694/MJA2.51282
Publisher: SAGE Publications
Date: 21-06-2021
DOI: 10.1177/0272989X211020317
Abstract: The effectiveness of patient decision aids (PtDAs) and other shared decision-making (SDM) interventions for socially disadvantaged populations has not been well studied. To assess whether PtDAs and other SDM interventions improve outcomes or decrease health inequalities among socially disadvantaged populations and determine the critical features of successful interventions. MEDLINE, CINAHL, Cochrane, PsycINFO, and Web of Science from inception to October 2019. Cochrane systematic reviews on PtDAs. Randomized controlled trials of PtDAs and SDM interventions that included socially disadvantaged populations. Independent double data extraction using a standardized form and the Template for Intervention Description and Replication checklist. Twenty-five PtDA and 13 other SDM intervention trials met our inclusion criteria. Compared with usual care, PtDAs improved knowledge (mean difference = 13.91, 95% confidence interval [CI] 9.01, 18.82 [I 2 = 96%]) and patient-clinician communication (relative risk = 1.62, 95% CI 1.42, 1.84 [I 2 = 0%]). PtDAs reduced decisional conflict (mean difference = −9.59 95% CI −18.94, −0.24 [I 2 = 84%]) and the proportion undecided (relative risk = 0.39 95% CI 0.28, 0.53 [I 2 = 75%]). PtDAs did not affect anxiety (standardized mean difference = 0.02, 95% CI −0.22, 0.26 [I 2 = 70%]). Only 1 trial looked at clinical outcomes (hemoglobin A1C). Five of the 12 PtDA studies that compared outcomes by disadvantaged standing found that outcomes improved more for socially disadvantaged participants. No evidence indicated which intervention characteristics were most effective. Results were similar for SDM intervention trials. Sixteen PtDA studies had an overall unclear risk of bias. Heterogeneity was high for most outcomes. Most studies only had short-term follow-up. PtDAs led to better outcomes among socially disadvantaged populations but did not reduce health inequalities. We could not determine which intervention features were most effective. [Box: see text]
Publisher: Oxford University Press (OUP)
Date: 25-05-2018
Abstract: Adults with low literacy are less empowered to take care of their health, have poorer health outcomes and higher healthcare costs. We facilitated partnerships between adult literacy teachers and community health providers to deliver a health literacy training program in adult basic education classrooms. Following course completion we interviewed 19 adult education teachers (15 delivering the health literacy program 4 delivering standard literacy classes) and four community health providers (CHPs) about their experiences, and analysed transcripts using Framework analysis. Written feedback from eight teachers on specific course content was added to the Framework. Health literacy teachers reported a noticeable improvement in their student's health behaviours, confidence, vocabulary to communicate about health, understanding of the health system and language, literacy and numeracy skills. CHP participation was perceived by teachers and CHPs as very successful, with teachers and CHPs reporting they complemented each other's skills. The logistics of coordinating CHPs within the constraints of the adult education setting was a significant obstacle to CHP participation. This study adds to existing evidence that health is an engaging topic for adult learners, and health literacy can be successfully implemented in an adult basic learning curriculum to empower learners to better manage their health. Health workers can deliver targeted health messages in this environment, and introduce local health services. Investment in adult literacy programs teaching health content has potential both to meet the goals of adult language and literacy programs and deliver health benefit in vulnerable populations.
Publisher: Wiley
Date: 06-06-2019
DOI: 10.1002/PON.5110
Abstract: Engaging in shared decision-making may be particularly difficult for adolescents and young adults with cancer (AYAs), possibly because of lower levels of health literacy. Family members of AYAs are likely to support decision-making about their healthcare by contributing to health literacy skills ractices however, the nature of this process is unclear. This systematic review synthesized qualitative studies that explored the process of decision-making and characterized how AYA healthcare information is shared, from the perspective of the AYA and their family members. Electronic searches of EMBASE, MEDLINE, PsycINFO, and CINAHL were conducted in May 2018. Peer-reviewed studies discussing the decision-making process in AYAs and/or their families were eligible for inclusion. Findings were analyzed thematically using Framework analysis. Seven thousand two hundred seventy-three studies were screened, and 14 eligible studies were included. The synthesized themes aligned with the Supported Health Literacy Pathway model Our findings suggest that health literacy is a dynamic and transactional process and provide clinicians, researchers, and other stakeholders with a framework to foster AYA engagement in decision-making.
Publisher: Wiley
Date: 19-10-2021
DOI: 10.1002/HPJA.416
Abstract: Inadequate health literacy is common in those with chronic kidney disease (CKD), especially among culturally and linguistically erse groups. Patient information for people with CKD, including those with kidney failure requiring dialysis, is often written beyond their literacy level, and many CKD‐related apps are not accurate or evidence based. These represent important barriers to health care decision‐making and equity in access to health care. We developed a cross‐platform application (the “SUCCESS app”) to support Australian adults with kidney failure requiring dialysis to actively participate in self‐management and decision‐making. App content was informed by health literacy theory which recognises the importance of reducing the complexity of health information as well as equipping consumers with the skills necessary to access, understand and act on this information. The development team comprised members of erse backgrounds and expertise, including nursing, allied health, psychology, epidemiology, nephrology and IT, as well as consumer representatives. Content areas included diet, fluids, medicine, physical activity, emotional well‐being and supportive care, chosen as they represent important decision points in the CKD trajectory. To support functional health literacy, a four‐step process to simplify written content was used including calculating readability statistics, applying the Patient Education Materials Assessment Tool, supplementing written information with video and audio content, and incorporating micro‐learning and interactive quizzes. To develop communicative and critical health literacy skills, question prompt lists and evidence‐based volitional help sheets were included in each module to support question‐asking and behaviour change. We also developed animated skills training related to communication, shared decision‐making and critical appraisal of health information. This is the first health literacy informed app developed to promote active patient participation in CKD management and decision‐making. Ongoing evaluation of the SUCCESS app through analysis of quantitative and qualitative data will provide valuable insights into the feasibility of implementing the app with dialysis patients, and the impact of the intervention of psychosocial and clinical outcomes. Digital health solutions have been found to improve self‐management for chronic conditions, and could optimise the use of health care services and patient outcomes.
Publisher: Wiley
Date: 31-01-2021
DOI: 10.1002/HPJA.456
Abstract: Low health literacy disproportionately affects adults from culturally and linguistically erse backgrounds. This study investigated the health literacy of adults attending outpatient allied health services in western Sydney, a highly erse region in Sydney with residents from a range of cultural and linguistic backgrounds. A cross‐sectional survey was undertaken between March and April 2017 using the Health Literacy Questionnaire (HLQ). Participants, aged over 18 years and with a primary language of English, Arabic, Chinese or Hindi, were recruited from outpatient allied health clinics at Westmead Hospital. Means (standard deviation) for each of the nine HLQ domains were calculated and associations with demographic variables were investigated using analysis of variance (ANOVA). Two hundred and thirty people were included with mean age of 45.1 years (SD = 19.0), the majority were female (75.5%), over half were born overseas (55.7%) and 77.6% reported speaking English at home. The highest mean score on a HLQ domain (out of 5) was “Understanding health information well enough to know what to do” (M = 4.19 SD = 0.67), and the lowest mean score (out of 4) was “Appraisal of health information” (M = 2.97 SD = 0.54). Participants who did not speak English at home had significantly lower scores on seven of the nine HLQ domains. Important health literacy strengths and limitations of a erse s le of adults attending outpatient allied health services in western Sydney were identified. Findings should be considered in the light of the cross‐sectional survey methodology with non‐random s ling. Data will inform future interventions to improve health literacy and health outcomes among vulnerable population groups in western Sydney.
Publisher: Oxford University Press (OUP)
Date: 20-07-2023
Abstract: Health literacy is an important aspect of equitable, safe, and high-quality care. For organizations implementing health literacy initiatives, using ‘change ch ions’ appears to be a promising strategy. This systematic review aimed to identify the empirical and conceptual research that exists about health literacy ch ions. 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 ch ions were not the focus of the article. Ch ions included staff across frontline, management, and executive levels. Only five studies described training for ch ions. Key ch ion 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 ch ions 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 ch ions on implementation of health literacy initiatives. Overall, few of the articles described health literacy ch ions 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).
Publisher: Cold Spring Harbor Laboratory
Date: 12-06-2021
DOI: 10.1101/2021.06.09.21258450
Abstract: To better understand the characteristics of, and requirements for, lay summaries by reviewing journals, global health organisations, professional medical associations and multi-disciplinary organisations, consumer advocacy groups and funding bodies. Using a scoping review methodology, we searched the websites of each identified data source to determine if they require, suggest, or refer to lay summaries. Two reviewers extracted lay summary writing instructions from eligible data sources from Australia, USA, UK, Canada and New Zealand. Data sources were linked to the top 10 non-communicable diseases. Using an inductive approach, we identified characteristics of lay summaries and lay summary writing instructions and extracted data on these characteristics. These characteristics are lay summary formats, audience, requirements, authorship and labels, and elements of lay summary writing instructions (e.g. word count/length). We also noted who was expected to write the lay summaries, whether they were mandatory or optional, and the terms used for to denote them. The websites of 526 data sources were searched. Of these, 124 published or mentioned lay summaries and 108 provided writing instructions. For lay summaries, most were in journals, written by the author of the published paper, and only half were mandatory. Thirty-three distinct labels for a lay summary were identified, the most common being “graphical abstract”, “highlights” and “key points”. From the lay summary writing instructions, the most common elements for written lay summaries referred to: structure (86%), content (80%) and word count/length (74%). The least common elements were readability (3%), use of jargon, acronyms and abbreviations (24%), and wording (29%). The target audience was unclear in 68 of 108 (63.0%) of lay summary instructions. Although we identified over 100 sources provided instructions for writing lay summaries, very few provided instructions related to readability, use of jargon, acronyms and abbreviations, and wording. Some instructions provided structured formats via subheadings or questions to guide content, but not all. Only half mandated the use of lay summaries. For lay summaries to be effective, writing instructions should consider the intended audience, ideally incorporating consumer input into their development. Presently, lay summaries are likely to be inaccessible to many consumers, written at a high reading level, with jargon, acronyms and abbreviations. Ideally, all research articles will have an accompanying lay summary. Mandatory lay summaries, however, are of limited value without clear and thorough instructions to guide authors. Patients or the public were not involved in the design, or conduct, or reporting, or dissemination plans of our research study. We conducted a scoping review using methods outlined in the PRISMA extension for scoping reviews and information in the Joanna Briggs Institute Reviewers’ Manual for scoping reviews. A protocol for this study was completed prior to data analysis and is on Open Science Framework.
Publisher: Cold Spring Harbor Laboratory
Date: 08-2021
DOI: 10.1101/2021.07.29.21261321
Abstract: To manage the COVID-19 pandemic effectively, governments need clear and effective communication. This is a challenge for culturally erse communities as groups may have different informational needs and information-seeking behaviours. In this paper we present the frequency of information sources for COVID-19 in a culturally erse area of Sydney, Australia. This study reports findings from two surveys. The first recruited participants across 10 languages between March 21 and July 9, 2021. The second provides a point of reference, and was an Australian, nationally-representative s le of English-speaking participants between November 4 – 18, 2020. For the survey in culturally and linguistically erse communities, of 708 participants, mean age was 45.4 years (SE 0.78), and 51% of respondents were female. Across all language groups, 54.7% of participants used Australian official or public broadcasters to find out about COVID-19 (n=421). Australian commercial information sources (54.1%, n=417), social media (51.6%, n=397), and family and friends in Australia (32.7%, n=252) were common sources. Patterns varied substantially across language groups. In the nationally representative survey (n=2313), 67% of participants (n=1540) used Australian official or public broadcasters, with lower proportions for social media (31.9%, n=738) and friends, family or other personal sources (23.1% n=533). Almost 50% of participants from culturally and linguistically erse communities did not report using Australian official or public broadcaster as main sources of information. Instead Australian commercial information sources, friends and family, overseas sources and social media were common. Though a crude comparison of the two datasets, this data can guide policy decisions for communication to different community groups. Further analysis is needed to interpret this data. Better understanding of how erse communities seek and receive COVID-19 health information is imperative as we manage the current COVID-19 outbreak in the Sydney region.
Publisher: Elsevier BV
Date: 10-2021
Publisher: Wiley
Date: 29-11-2022
DOI: 10.1111/HEX.13678
Abstract: 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. This narrative case study describes an ex le 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 erse 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. 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 ch ions, (ii) co‐generated resources, (iii) evolving capability and understanding and (iv) increasing trust and partnership synergy. 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. Our co‐creation approach brought together a community of practice of consumers, healthcare professionals and researchers as equal partners.
Publisher: SAGE Publications
Date: 28-08-2021
DOI: 10.1177/0272989X211029579
Abstract: Participation by patients in their own health care improves quality and safety. Question prompt lists (QPLs) can improve participation, particularly with doctors’ endorsement. Few data have explored doctors’ attitudes on these tools. We sought the experiences and attitudes of general practitioners and other specialists toward patient question asking and QPLs in their practice. In-depth, semistructured interviews and focus groups with purposively selected Australian doctors were conducted. Interview guides were used to explore doctors’ experiences of patient question asking, patients’ lists, and a s le QPL created using an Australian government-funded online tool, “Question Builder.” Recordings were transcribed verbatim and data analyzed thematically using the method by Braun and Clarke. Focus groups with 3 to 9 participants and a further 17 in idual interviews were conducted. There was a total of 40 participants, 23 general practitioners and 17 other specialists (e.g., physicians, surgeons, pediatricians). Our analysis was summarized into several themes. 1) The doctors expected, encouraged, and had significant experience of patient question asking and patients’ lists. They described many barriers for patients and their efforts to ensure patients had the information they needed. 2) The doctors felt responsible for creating an environment conducive to patient question asking, the delivery of answers, having strategies for unanswered questions, and balancing the agendas of both parties in the consultation. 3) Structured QPLs that prepared patients and facilitated the consultation agenda were viewed positively. The degree of time pressures participating doctors experienced in their context had a strong influence on how they responded to the s le QPL. Doctors in this study expected patients to ask questions and endorsed the benefits of QPLs. However, there were more erse views about the feasibility of implementing them in practice. Designing QPLs to fit within current workflows, via more succinct and tailored designs, may result in wider doctor acceptance and endorsement, hence maximizing the benefits of QPLs with improved patient participation and patient safety.
Publisher: Springer Science and Business Media LLC
Date: 27-10-2023
DOI: 10.1007/S40271-022-00606-7
Abstract: 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. 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. 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. 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.
Publisher: SLACK, Inc.
Date: 10-2021
DOI: 10.3928/24748307-20210911-01
Abstract: Few health literacy interventions exist for new parents. We developed a group-based health literacy program (“Parenting Plus”), which was initially tested in a feasibility study in 2018. In this brief report, we describe how feasibility findings were incorporated into the Parenting Plus program. Using a codesign process with patient partners (feasibility study participants) and health staff to revise the program, version 2 was tested in a single-site pilot using pre- and post-intervention testing. Parents older than age 16 years whose child was between ages 4 and 26 weeks were recruited from nurse home visits in western Sydney, Australia. Interested participants attended the free 4-week health literacy program (four 2-hour sessions) delivered by a trained facilitator. Piloting suggested the revised program is acceptable to new parents, has good retention (93% over the course of 4 weeks), and can improve health literacy skills, including access to reliable health information and services. Our iterative development and codesign approach integrated learnings from various sources to inform the design of an evidence-based health literacy intervention. We now move to an effectiveness implementation hybrid trial to test intervention effectiveness (health literacy skill development) and support translation of research findings into routine practice. [ HLRP: Health Literacy Research and Practice . 2021 (4):e276–e282.]
Publisher: Hindawi Limited
Date: 24-04-2023
DOI: 10.1155/2023/9807271
Publisher: BMJ
Date: 24-12-2021
Publisher: Informa UK Limited
Date: 30-04-2022
DOI: 10.1080/08870446.2021.1909023
Abstract: The aim of this study was to explore how people with diabetes and erse health literacy levels conceptualise their experience and efforts to engage in self-management behaviours (their self-management 'schemas'). A qualitative design was applied. Twenty-six people in Sydney, Australia, took part in semi-structured interviews, which were audio-recorded and coded using Framework analysis. Half the participants (54%) had limited health literacy, whereas 38% adequate health literacy (using Newest Vital Sign). Regardless of health literacy, people described how monitoring increased self-management awareness and signalled periods of low self-management ('lulls'). Accounts of monitoring to sustain motivation were more apparent for participants with adequate health literacy. Most participants described simple and flexible rules (e.g. use artificial sweeteners eat in moderation). Two schemas related to 'lulls': a 'problem-solving orientation' depicted lulls as inevitable and was associated with varied coping strategies a 'willpower orientation' attributed lulls to lack of 'willpower,' and described willpower as a main coping strategy. There is considerable variation in how people think about their diabetes self-management and the strategies they use. Health literacy may contribute to some of this variation. Self-management interventions could benefit from depicting motivation as fluctuating and challenging ideas about willpower and self-blame.
Publisher: Springer Science and Business Media LLC
Date: 29-05-2021
Publisher: Wiley
Date: 30-10-2018
DOI: 10.1111/AJCO.13089
Publisher: Oxford University Press (OUP)
Date: 26-02-2020
Abstract: What are clinicians’ views about the diagnosis of polycystic ovary syndrome (PCOS), and how do they handle any complexities and uncertainties in practice? Clinicians have to navigate many areas of complexity and uncertainty regarding the diagnosis of PCOS, related to the diagnostic criteria, limitations in current evidence and misconceptions surrounding diagnosis, and expressed concern about the risk and consequences of both under- and overdiagnosis. PCOS is a complex, heterogeneous condition with many areas of uncertainty, raising concerns about both underdiagnosis and overdiagnosis. Quantitative studies with clinicians have found considerable variation in diagnostic criteria used and care provided, as well as a lack of awareness around the breadth of PCOS features and poor uptake of recommended screening for metabolic complications. Clinicians’ views about the uncertainties and complexities of diagnosing PCOS have not been explored. Semi-structured telephone interviews were conducted with clinicians from September 2017 to July 2018 to explore their perceptions about the diagnosis of PCOS, including how they handle any complexities and uncertainties in practice. A group of 36 clinicians (15 general practitioners, 10 gynaecologists and 11 endocrinologists) currently practicing in Australia, were recruited through advertising via professional organisations, contacting a random s le of endocrine and gynaecology teams across Australia and snowballing. Transcribed audio-recordings were analysed thematically using Framework analysis. Clinicians expressed a range of uncertainties and complexities regarding the diagnosis of PCOS, which were organised into three areas: (i) establishing diagnosis (e.g. lack of standardisation regarding diagnostic cut-offs, risk of misdiagnosis), (ii) factors influencing the diagnostic process (e.g. awareness of limitations in evidence and consideration of the benefits and harms) and (iii) strategies for handling challenges and uncertainties (e.g. using caution and communication of uncertainties). Clinicians also varied in their concerns regarding under- and overdiagnosis. Overall, most felt the diagnosis was beneficial for women provided that it was the correct diagnosis and time was taken to assess patient expectations and dispel misconceptions, particularly concerning fertility. There is possible selection bias, as clinicians who are more knowledgeable about PCOS may have been more likely to participate. Clinicians’ views may also differ in other countries. These findings underscore the vital need to first consider PCOS a diagnosis of exclusion and use caution before giving a diagnosis in order to reduce misdiagnosis, as suggested by clinicians in our study. Until there is greater standardisation of diagnostic criteria, more transparent conversations with women may help them understand the uncertainties surrounding the criteria and limitations in the evidence. Additionally, clinicians emphasised the importance of education and reassurance to minimise the potential harmful impact of the diagnosis and improve patient-centred outcomes. The study was funded by the University of Sydney Lifespan Research Network and an NHMRC Program Grant (APP1113532). T.C. is supported by an Australian Government Research Training Program (RTP) Scholarship and a Sydney Medical School Foundation Scholarship, from the The University of Sydney, Australia. B.W.M. reports consultancy for ObsEva, Merck, Merck KGaA and Guerbet. No further competing interests exist. N/A
Publisher: JMIR Publications Inc.
Date: 31-08-2022
DOI: 10.2196/39909
Abstract: 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. The purpose of this study is to investigate the efficacy of the SUCCESS app intervention. 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 in idually 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. 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. 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 erse 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. Australia New Zealand Clinical Trials Registry (ANZCTR) ACTRN12621000235808 www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380754& isReview=true DERR1-10.2196/39909
Publisher: Elsevier BV
Date: 11-2016
DOI: 10.1016/J.PEC.2016.05.008
Abstract: Participation in shared decision-making (SDM) may be difficult for adults with lower literacy. Tools to support consumers to engage in SDM are rarely designed for or evaluated with adults with lower literacy and/or poor English language. Qualitative interviews were conducted with 26 adults with lower literacy and/or poor English language skills to investigate (a) whether participants where able to read and understand two generic SDM consumer support tools (Smart Health Choices and AskShareKnow question-sets), (b) which question-set was easier for participants and, (c) perceived usefulness of the question-sets and barriers to use. Interviews were analysed using Framework Analysis. Participants had difficulties understanding terms embedded within both the AskShareKnow and Smart Health Choices questions. Our findings suggest that the AskShareKnow question-set was easier for our participants than the Smart Health Choices questions, and clarification using a structured response was reasonably effective. While participants appreciated the usefulness of the questions, they identified important barriers to use. Generic question-sets alone are not sufficient to support SDM for adults with lower literacy and/or poor English-language skills. To ensure that SDM is accessible to all, we must consider how best to support adults with low literacy and/or poor English-language skills to participate in this process.
Publisher: SLACK, Inc.
Date: 10-01-2020
DOI: 10.3928/24748307-20200217-01
Abstract: A significant proportion of new parents in high-income countries have lower health literacy, but few health literacy interventions exist for this group. This study investigated the feasibility of delivering health literacy content within existing postnatal parenting groups. Multicenter feasibility study using a seven-group pre-test post-test design. Parents older than age 16 years with children between age 4 and 26 weeks with sufficient English fluency were invited to participate in a 4-week health literacy program (four 2-hour sessions) delivered by trained facilitators (e.g., child and family health nurses). Mixed-methods evaluation was used, with quantitative data analyzed descriptively and qualitative data (e.g., focus groups, observations, interviews) analyzed using the Framework approach. Our health literacy program was successfully delivered at six sites in New South Wales, Australia, in 2018. Our recruitment strategy was successful in reaching erse learners ( N = 73), many who were born in a country other than Australia. However, few had limited health literacy as assessed by a subjective, single-item measure, and only half completed the follow-up questionnaires. High baseline knowledge, skills, and confidence among participants limited the potential for change in these quantitative outcomes but shed light on the utility of different measurement instruments in this context. Qualitative analyses suggested that the health literacy program aligned well with the institutional objectives of child and family health services and was acceptable to learners from erse cultural backgrounds. However, in its current form, it may be perceived as too simple for learners with higher levels of education and literacy. Our study has offered practical insights into the feasibility of embedding a health literacy intervention into established postnatal parenting groups and shown how program resources and facilitator training could be adapted to make the program more suitable for a range of learners and better support facilitators. [ HLRP: Health Literacy Research and Practice . 2020 (1):e67–e78.] This study looked at the feasibility of delivering a 4-week health literacy program to new parents using existing postnatal parenting groups in New South Wales, Australia. Although the program was generally acceptable to learners and facilitators, this study offers several strategies to further improve the program so that it better supports facilitators and suits a wider range of learners.
Publisher: Wiley
Date: 05-07-2017
DOI: 10.1111/HEX.12580
Publisher: Springer Science and Business Media LLC
Date: 04-06-2016
Publisher: Elsevier BV
Date: 09-2019
DOI: 10.1016/J.PEC.2019.03.022
Abstract: Limited ex les exist globally of coordinated, organisation-wide health literacy approaches to systematically improve the understandability and actionability of patient health information. Even fewer have been formally evaluated. The aim of this study was to use the Patient Education Materials Assessment Tool (PEMAT) to evaluate the effectiveness of an organisation-wide, evidence-based approach to improve the understandability and actionability of patient information materials in regional health service in New South Wales, Australia. Two independent raters (blinded to the document version) evaluated pre- and post-implementation versions of 50 randomly-selected patient information materials using the PEMAT, with differences in understandability and actionability analysed using paired s les tests. Mean (±SD) overall scores for understandability increased significantly by 5% (95% CI 2-8 p = 0.002) up to 77%±10%, and mean actionability (±SD) increased significantly by 4% (95% CI 0-8 p = 0.046) up to 56%±22%. These results demonstrate that organisation-wide approaches with standardised processes for staff to prepare, review and store written patient information and education materials can be successfully implemented to address the impacts and risks of low health literacy. The success of this approach provides a framework for other health organisations to work in partnership with patients to make health information more understandable and actionable.
Publisher: BMJ
Date: 03-2019
DOI: 10.1136/BMJOPEN-2018-026342
Abstract: To explore older people’s perspectives and experiences with shared decision-making (SDM) about medication for cardiovascular disease (CVD) prevention. Semi-structured interviews with 30 general practice patients aged 75 years and older in New South Wales, Australia, who had elevated CVD risk factors (blood pressure, cholesterol) or had received CVD-related lifestyle advice. Data were analysed by multiple researchers using Framework analysis. Twenty eight participants out of 30 were on CVD prevention medication, half with established CVD. We outlined patient experiences using the four steps of the SDM process, identifying key barriers and challenges: Step 1. Choice awareness: taking medication for CVD prevention was generally not recognised as a decision requiring patient input Step 2. Discuss benefits/harms options: CVD prevention poorly understood with emphasis on benefits Step 3. Explore preferences: goals, values and preferences (eg, length of life vs quality of life, reducing disease burden vs risk reduction) varied widely but generally not discussed with the general practitioner Step 4. Making the decision: overall preference for directive approach, but some patients wanted more active involvement. Themes were similar across primary and secondary CVD prevention, different levels of self-reported health and people on and off medication. Results demonstrate how older participants vary widely in their health goals and preferences for treatment outcomes, suggesting that CVD prevention decisions are preference sensitive. Combined with the fact that the vast majority of participants were taking medications, and few understood the aims and potential benefits and harms of CVD prevention, it seems that older patients are not always making an informed decision. Our findings highlight potentially modifiable barriers to greater participation of older people in SDM about CVD prevention medication and prevention in general.
Publisher: JMIR Publications Inc.
Date: 14-02-2023
DOI: 10.2196/40645
Abstract: 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 ersity, 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.
Publisher: Wiley
Date: 26-05-2021
DOI: 10.1002/HPJA.350
Abstract: We developed and evaluated a health literacy training program for allied health professionals, and explored the feasibility of a train‐the‐trainer model to support dissemination. The program combined didactic and experiential teaching methods and behaviour change techniques, with a focus on teach‐back and developing easy‐to‐understand written materials. Outcomes included participant reactions, confidence (range: 6‐30), behavioural intentions (range: 6‐42), and dissemination of training content. Implementation outcomes were evaluated using the Normalization MeAsure Development (NoMAD) tool, assessing the constructs of coherence (range: 4‐20), cognitive participation (range: 4‐20), collective action (range: 7‐35) and reflexive monitoring (range: 5‐25). Of the 29 allied health professionals who participated, 90% rated the program as ‘excellent’/‘very good’, and 97% said the information was ‘extremely’/‘very’ helpful for their everyday practice. We observed increases in confidence (mean difference [MD] = 6.3, standard deviation [SD] = 2.7, t 25 = 11.87, P .001) and intentions (MD = 3.6, SD = 8.1, t 23 = 2.2, P = .04) related to health literacy practices after 6 weeks. Improved confidence was retained over 6 months (MD = 7.1, SD = 5.2, t 18 = 5.96, P .001). After 6 months, 95% of participants (n = 19) reported using teach‐back and 50% (n = 10) reported having used a readability formula. Eight‐five per cent of participants (17/20) had trained others in health literacy, reaching n = 201 allied health professionals and students. NoMAD scores were highest in relation to cognitive participation (/20) (M = 18.2, SD = 2.1) and lowest in relation to collective action (/35) (M = 25.4, SD = 3.0). A train‐the‐trainer model appears to be a feasible method to disseminate health literacy training, but additional work may be needed to improve the collective work done to enable health literacy practices in real‐world clinical contexts. Staff training is particularly important in highly erse areas where patients are disproportionately affected by low health literacy.
Publisher: Oxford University Press (OUP)
Date: 2019
Abstract: What are the benefits and harms of receiving a polycystic ovary syndrome (PCOS) diagnosis in a community s le of women, including impact on psychosocial wellbeing, lifestyle choices and behaviour? Although some women benefit considerably from the diagnosis, such as through increased awareness and reassurance, women with minimal symptoms may experience more harm than benefit, including long-lasting anxiety and altered life plans. Disease labels can validate symptoms and play a vital role in understanding and coping with illness however, they can also cause harm by evoking illness schemas about severity and permanence. Regarding PCOS, the diagnostic criteria have expanded over time to include women with milder phenotypes (such as those without signs of androgen excess). This has occurred despite limited investigation of the benefits and harms of the diagnosis and has increased the number of women diagnosed. Semi-structured interviews were conducted face-to-face or by telephone with 26 participants from April–July 2018 to explore women’s experiences with the diagnosis, including the benefits and harms of receiving the diagnosis and the impact on their life. In total, 26 women in the community self-reporting a diagnosis of PCOS (reporting mild to severe symptoms) made by a medical doctor, aged 18–45 years and living in Australia were recruited through social media. Data were analysed thematically using Framework analysis. The study identified a range of both positive and negative effects of a PCOS diagnosis in the immediate, short and long-term, which were influenced by symptom severity, expectations and experience. For women with previously unexplained and bothersome symptoms, it was a relief to receive a diagnosis, and this resulted in an increased understanding about the importance of a healthy lifestyle. By contrast, women with milder symptoms often reported feeling shocked and overwhelmed by the diagnosis, consequently experiencing anxiety about the associated long-term risks. The majority of women, regardless of symptom severity, experienced prolonged worry and anxiety about infertility, resulting for some in risk taking with contraception, unintended pregnancies, pressure to conceive early or altered life plans. With time, many women developed positive coping strategies and perceived the diagnosis to be valuable, including those who felt they had experienced minimal benefit or even harm. PCOS diagnosis was self-reported and the s le was highly educated. Fear of infertility was salient for many women, underscoring the need for accurate information, counselling and reassurance of fertility potential. Given the risk of significant consequences, health professionals should use a tailored approach to PCOS diagnosis to increase the benefits of appropriate and timely diagnosis for women affected by significant symptoms, while reducing the harms of unnecessarily labelling healthy women for whom the benefits of a diagnosis are small. The study was funded by the University of Sydney Lifespan Research Network and an NHMRC Program Grant (APP1113532). B.W.M. reports consultancy for ObsEva, Merck, Merck KGaA and Guerbet. No further competing interests exist. N/A
Publisher: Springer Science and Business Media LLC
Date: 27-11-2018
Publisher: Cold Spring Harbor Laboratory
Date: 26-10-2021
DOI: 10.1101/2021.10.25.21265503
Abstract: The current study examined patterns in COVID-19 testing and vaccination intentions across multiple language groups in Greater Western Sydney, Australia. Participants completed a cross-sectional survey available from March 21 to July 9, 2021 in Sydney, Australia. Surveys were available in English or translated (11 languages). Participants could complete surveys independently or with support from bilingual staff. Logistic regression models using post-stratification weighted frequencies identified factors associated with testing and vaccination intentions. Most of the 708 participants (88%, n=622) were not born in Australia 31% reported that they did not speak English well or at all (n=220) 70% had no tertiary qualifications (n=497) and 41% had inadequate health literacy (n=290). Most participants reported high testing intention (77.2%, n=546), with differences observed across language groups (p .001). The most frequently reported barrier to testing was concerns about infection at the clinic (26.1%). Half (53.0%) reported willingness to get a COVID-19 vaccine if recommended to them (n=375) 18% were unwilling (n=127), and the remainder unsure (29%, n=205). These proportions varied significantly by language group (p .001). Participants were more likely to be unwilling/hesitant if they were female (p=0.02) or did not use Australian commercial information sources (p=0.01). Concerns about side effects (30.4%, n=102) and safety (23.9%, n=80), were key reported barriers to vaccination. Different language groups have unique and specific needs to support uptake of COVID-19 testing and vaccination. Health services must work collaboratively with culturally and linguistically erse communities to provide tailored support to encourage COVID-19 testing and vaccination. 708 adults living in Sydney, Australia, who did not speak English as their main language at home took part in a survey about COVID-19 vaccination and testing. Participants could complete the survey online (English/translated) or with support from bilingual staff. The survey was available in 11 languages. Three quarters of participants (77%) reported they would get tested for COVID-19 if they had symptoms ‘no matter what.’ The most common barrier was concern about getting infected at the testing clinic. 53% of participants reported that they would get a COVID-19 vaccine if it was recommended to them. 18% reported that they wouldn’t get the vaccine, and 29% were unsure. The main barriers were concerns about vaccine side effects and safety. Intentions to get tested for COVID-19 or to get vaccinated varied significantly across language groups. Participants who were female, or who did not use Australian commercial information sources were more likely to be unwilling or unsure about getting a COVID-19 vaccine. Different language groups have unique and specific needs to support uptake of COVID-19 testing and vaccination. Health services must work collaboratively with culturally and linguistically erse communities to provide tailored support to encourage COVID-19 testing and vaccination.
Publisher: MDPI AG
Date: 04-02-2021
Abstract: Refugee and asylum seeker population numbers are rising in Western countries. Understanding the communication experiences, within healthcare encounters, for this population is important for providing better care and health outcomes. This review summarizes the literature on health consultation communication experiences of refugees and asylum seekers living in Western countries. Seven electronic databases were searched from inception to 31 March 2019. Studies were included if they aimed to improve, assess or report on communication/interaction in the primary health care consultation setting with refugees or asylum seekers, and were conducted in Western countries. A narrative synthesis of the literature was undertaken. Thematic analysis of the 21 included articles, showed that refugees and asylum seekers experience a range of communication challenges and obstacles in primary care consultations. This included practical and relational challenges of organizing and using informal and formal interpreters and cultural understanding of illness and healthcare. Non-verbal and compassionate care aspects of communication emerged as an important factor in helping improve comfort and trust between healthcare providers (HCP) and refugees and asylum seekers during a healthcare encounter. Improvements at the systems level are needed to provide better access to professional interpreters, but also support compassionate and humanistic care by creating time for HCPs to build relationships and trust with patients.
Publisher: SLACK, Inc.
Date: 10-2017
DOI: 10.3928/24748307-20171208-02
Abstract: Health literacy skills are often assessed in relation to written health materials however, many important communications are in other formats, especially verbal communication with health care providers. This qualitative study sought to examine adult learners' experiences of developing verbal health literacy skills within an Australian adult basic education program, and to explore verbal communication and shared decision-making as a constituent domain of health literacy. We conducted a semi-structured qualitative interview study between September and November 2014 with adult learners who had participated in a single-semester health literacy program that included an integrated shared decision-making component. We analyzed interviews using the Framework method a matrix-based approach to thematic analysis. A hybrid process of inductive and deductive coding was used to interpret raw data. Interviewees were 22 students from six health literacy classes and ranged in age from 18 to 74 years (mean, 48.3). The majority were women ( n = 15) and born outside Australia ( n = 13). Health literacy was generally limited according to the Newest Vital Sign screening tool ( n = 17). The health literacy program appeared to serve two key functions. First, it stimulated awareness that patients have the right to participate in decision-making concerning their treatment and care. Second, it facilitated verbal skill development across the domains of functional (e.g., communicating symptoms), communicative (e.g., asking questions to extract information about treatment options), and critical (e.g., integrating new knowledge with preferences) health literacy. Our findings support the conceptualization of health literacy as a modifiable health asset that is subject to change and improvement as a result of deliberate intervention. Results reinforce verbal health literacy as an important component of health literacy, and draw attention to the hierarchy of verbal skills needed for consumers to become more actively involved in decisions about their health. We present a revised model of health literacy based on our findings. [ Health Literacy Research and Practice . 2017 (4):e257–e268.] We developed a health literacy program for adults with lower literacy to help learners develop skills to talk to health care providers and share health decisions. The program was taught in Australian adult education settings. The article explores the range of health literacy skills needed for communication and decision-making in this study, and presents a model in which verbal skills are an important part of health literacy.
Publisher: Cold Spring Harbor Laboratory
Date: 27-04-2021
DOI: 10.1101/2021.04.19.21255709
Abstract: Vaccination rollout against COVID-19 has begun across multiple countries worldwide. Although the vaccine is free, rollout might still be compromised by hesitancy or concerns about COVID-19 vaccines. We conducted two online surveys of Australian adults in April (during national lockdown convenience cross-sectional s le) and November (virtually no cases of COVID-19 nationally representative s le) 2020, prior to vaccine rollout. We asked about intentions to have a potential COVID-19 vaccine (If a COVID-19 vaccine becomes available, I will get it) and free-text responses (November only). After adjustment for differences in s le demographics, the estimated proportion agreeing to a COVID-19 vaccine if it became available in April (n=1146) was 76.2%. In November (n=2034) this was estimated at 71.4% of the s le additional analyses identified that the variation was driven by differences in perceived public health threat between April and November. Across both surveys, female gender, being younger, having inadequate health literacy and lower education were associated with reluctance to be vaccinated against COVID-19. Lower perceived susceptibility to COVID-19, belief that data on the efficacy of vaccines is ‘largely made up’, having lower confidence in government, and lower perception of COVID-19 as a public health threat, were also associated with reluctance to be vaccinated against COVID-19. The top three reasons for agreeing to vaccinate (November only) were to protect myself and others, moral responsibility, and having no reason not to get it. For those who were indifferent or disagreeing to vaccinate, safety concerns were the top reason, followed by indecision and lack of trust in the vaccine respectively. These findings highlight some factors related to willingness to accept a COVID-19 vaccine prior to one being available in Australia. Now that the vaccine is being offered, this study identifies key issues that can inform public health messaging to address vaccine hesitancy. Perceived public health threat is associated with intentions to vaccinate Those believing the efficacy of vaccines is made up were less willing to get vaccinated To protect myself and others was the top reason for getting the vaccine Safety concerns was the top reason against getting the vaccine
Publisher: S. Karger AG
Date: 2018
DOI: 10.1159/000485735
Abstract: Hemorrhagic cystitis (HC) is a serious complication after hematopoietic stem cell transplantation (HSCT). Stromal cells have been tested as therapy for HC. Decidua stromal cells (DSCs) protect the fetus from the mother's immune system. Eleven patients with HC of grades 3-4 were treated with DSCs after HSCT. The median age was 33 years (range 8-50), and the median dose of DSCs was 1.5 × 106/kg (range 0.7-2.5). The patients were given 1 dose (1-4). In 5 patients, HC disappeared within 5 days after DSC infusion. Patients who received DSCs within 3 days after the start of HC had a duration of HC of 5 days and a shorter duration of pain than patients who were given DSCs later (p = 0.02). Three patients received DSCs prepared in albumin instead of AB-plasma and tended to have a shorter duration of pain (p = 0.07). There was no infusion toxicity. Adverse events were those often seen after HSCT. Nine of the 11 patients (82%) were alive 1 year after HSCT. Based on this pilot study, we started a randomized, placebo-controlled double-blind study using 2 doses of 1 × 106 DSCs/kg suspended in albumin for treatment of early HC.
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Start Date: 08-2023
End Date: 08-2026
Amount: $467,132.00
Funder: Australian Research Council
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