Psychological, social and financial impacts of COVID-19 on culturally and linguistically diverse communities in Sydney, Australia.

OBJECTIVE: To explore the psychological, social and financial outcomes of COVID-19-and the sociodemographic predictors of those outcomes-among culturally and linguistically diverse communities in Sydney, Australia. DESIGN: Cross-sectional survey informed by the Framework for Culturally Competent Health Research conducted between March and July 2021. SETTING: Participants who primarily speak a language other than English at home were recruited from Greater Western Sydney, New South Wales. PARTICIPANTS: 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. OUTCOME MEASURES: 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). RESULTS: In this analysis, conducted prior to the 2021 COVID-19 outbreak in Sydney, 25% of the sample 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. CONCLUSION: Culturally and linguistically diverse 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.

Embedding a Health Literacy Intervention Within Established Parenting Groups: An Australian Feasibility Study.

BACKGROUND: A significant proportion of new parents in high-income countries have lower health literacy, but few health literacy interventions exist for this group. OBJECTIVE: This study investigated the feasibility of delivering health literacy content within existing postnatal parenting groups. METHODS: 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. KEY RESULTS: Our health literacy program was successfully delivered at six sites in New South Wales, Australia, in 2018. Our recruitment strategy was successful in reaching diverse 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 diverse cultural backgrounds. However, in its current form, it may be perceived as too simple for learners with higher levels of education and literacy. CONCLUSIONS: 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;4(1):e67-e78.] PLAIN LANGUAGE SUMMARY: 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.

A Linguistic Analysis of Health Literacy Demands of Chronic Kidney Disease Patient Education Materials.

BACKGROUND: Instruments to assess the quality and comprehensibility of printed patient education materials may lack proper consideration of how readers derive meaning from text. The Evaluative Linguistic Framework (ELF) considers how factors that influence readers' expectations about health care texts also affect their ability to understand them. The ELF has demonstrated value in improving the quality of patient materials about medication, consent, and self-reported questionnaires, but has not yet been used to evaluate a corpus of patient education materials about chronic disease self-management. OBJECTIVE: This study sought to apply the ELF to examine specific elements of printed self-management patient education materials for chronic kidney disease (CKD) not captured by other tools. METHODS: From a previously published systematic review, we identified 14 patient education materials (eight self-management, six diet and nutrition) for people with CKD. We used the ELF to identify the different ways the text could be structured, its intended purpose, the relationship established between reader and writer, presence of signposting, its complexity and technicality of language, and factual content. KEY RESULTS: Our analysis identified nine possible structural units, of which "introducing the problem" and "instructing the reader to self-manage" were common to all materials. However, there was no consistency or common sequence to these units of text. The intended readership and aims of the author(s) were not always clear; many materials made assumptions about what the reader knew, the language was often complex and dense, and the meta-discourse was sometimes distracting. CONCLUSIONS: Our analysis suggests CKD document developers can benefit from a theoretically grounded linguistic tool that focuses on the intended audience and their specific needs. The ELF identified structural units of text, aligned with rhetorical elements that can be uniformly applied for developing self-management education materials for CKD, and provided checks for language complexity. Further work can determine its usefulness for other (e.g., electronic) formats and other chronic diseases. [HLRP: Health Literacy Research and Practice. 2018;2(1):e1-e14.]. PLAIN LANGUAGE SUMMARY: Helping patients make meaning from information about their condition is a key goal of health care organizations. We analyzed chronic kidney disease patient education materials on self-management using the Evaluative Linguistic Framework. The purpose and intended audience were frequently unclear. We identified nine structural units of text that may assist information providers to plan and structure content.

Health Literacy Demand of Printed Lifestyle Patient Information Materials Aimed at People With Chronic Kidney Disease: Are Materials Easy to Understand and Act On and Do They Use Meaningful Visual Aids?

People with chronic kidney disease (CKD) need usable information on how to live well and slow disease progression. This information is complex, difficult to communicate, and changes during the course of the disease. We examined lifestyle-related printed CKD patient education materials focusing on actionability and visual aids. From a previous systematic review assessing readability of CKD patient information, we identified materials targeting nutrition, exercise, and self-management. We applied the Suitability Assessment of Materials (SAM) and Patient Education Materials Assessment Tool (PEMAT) to evaluate how easy materials were to understand (understandability) and act on (actionability). We created the 5C image checklist and systematically examined all visual aids for clarity, contribution, contradiction, and caption. Of the 26 materials included, one fifth (n = 5, 19%) were rated "not suitable" on SAM and fewer than half (n = 11, 42%) were rated "superior." PEMAT mean subdomain scores were suboptimal for actionability (52) and visuals (37). Overall, more than half of all 223 graphics (n = 127, 57%) contributed no meaning to the text. Images in three documents (12%) directly contradicted messaging in the text. CKD lifestyle information materials require focused improvements in both actionability of advice given and use of visual aids to support people with CKD to self-manage their condition. The fifth C is culture and is best evaluated by user-testing.

Evaluation of an Australian health literacy training program for socially disadvantaged adults attending basic education classes: study protocol for a cluster randomised controlled trial.

BACKGROUND: People with low literacy and low health literacy have poorer health outcomes. Literacy and health literacy are distinct but overlapping constructs that impact wellbeing. Interventions that target both could improve health outcomes. METHODS/DESIGN: This is a cluster randomised controlled trial with a qualitative component. Participants are 300 adults enrolled in basic language, literacy and numeracy programs at adult education colleges across New South Wales, Australia. Each adult education institute (regional administrative centre) contributes (at least) two classes matched for student demographics, which may be at the same or different campuses. Classes (clusters) are randomly allocated to receive either the health literacy intervention (an 18-week program with health knowledge and skills embedded in language, literacy, and numeracy training (LLN)), or the standard Language Literacy and Numeracy (LLN) program (usual LLN classes, specifically excluding health content). The primary outcome is functional health literacy skills - knowing how to use a thermometer, and read and interpret food and medicine labels. The secondary outcomes are self-reported confidence, more advanced health literacy skills; shared decision making skills, patient activation, health knowledge and self-reported health behaviour. Data is collected at baseline, and immediately and 6 months post intervention. A sample of participating teachers, students, and community health workers will be interviewed in-depth about their experiences with the program to better understand implementation issues and to strengthen the potential for scaling up the program. DISCUSSION: Outcomes will provide evidence regarding real-world implementation of a health literacy training program with health worker involvement in an Australian adult education setting. The evaluation trial will provide insight into translating and scaling up health literacy education for vulnerable populations with low literacy. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12616000213448 .

Factors influencing parental decision making about stimulant treatment for attention-deficit/hyperactivity disorder.

BACKGROUND: Attention-deficit/hyperactivity disorder (ADHD) is a pediatric psychological condition commonly treated with stimulant medications. Negative media reports and stigmatizing societal attitudes surrounding the use of these medications make it difficult for parents of affected children to accept stimulant treatment, despite it being first line therapy. OBJECTIVE: The purpose of this study was to identify factors that influence parental decision making regarding stimulant treatment for ADHD. METHODS: A systematic review of the literature was conducted to identify studies: 1) that employed qualitative methodology, 2) that highlighted treatment decision(s) about stimulant medication, 3) in which the decision(s) were made by the parent of a child with an official ADHD diagnosis, and 4) that examined the factors affecting the decision(s) made. Individual factors influencing parental treatment decision making, and the major themes encompassing these factors, were identified and followed by a thematic analysis. RESULTS: Eleven studies reporting on the experiences of 335 parents of children with ADHD were included. Four major themes encompassing influences on parents' decisions were derived from the thematic analysis performed: confronting the diagnosis, external influences, apprehension regarding therapy, and experience with the healthcare system. CONCLUSIONS: The findings of this systematic review reveal that there are multiple factors that influence parents' decisions about stimulant therapy. This information can assist clinicians in enhancing information delivery to parents of children with ADHD, and help reduce parental ambivalence surrounding stimulant medication use. Future work needs to address parental concerns about stimulants, and increase their involvement in shared decision making with clinicians to empower them to make the most appropriate treatment decision for their child.

Impact of graphic format on perception of change in biological data: implications for health monitoring in conditions such as asthma.

BACKGROUND: Variation in graphic format can substantially influence interpretation of data. Despite a large body of literature on the optimal design of graphs, little attention has been paid to the format of charts for health monitoring. AIMS: This study assessed the effect of aspect ratio (x:y ratio) and interconnecting lines on visual identification of change in biological data, such as during asthma exacerbations. METHODS: Eighty volunteers viewed 72 sets of six consecutive blocks of unidentified biological data, recording if each block of data was increasing, decreasing, or the same as the previous block. Three chart aspect ratios were examined (A, 5.2:1; B, 3.0:1; C, 1.1:1), with or without lines between data points. Datasets from lung function monitoring by asthma patients included a mild/moderate/severe fall ('exacerbation') or no exacerbation. False negative (missing true exacerbations) and false positive (identifying non-existent exacerbations) responses were calculated. RESULTS: 84% of exacerbation blocks were correctly identified. There was a significant interaction between exacerbation severity and aspect ratio (p=0.0048). The most compressed chart (C) had the fewest false negative responses. Moderate falls were missed in 24%, 12%, and 5% of trials on charts A, B, and C, respectively (C vs A: adjusted relative risk 0.19 (95% CI 0.12 to 0.30)). False positive responses were infrequent (A, 2.5%; B, 3.8%; C, 8.3%), increasing slightly if data points were joined with lines (4.3% vs 5.1%, p=0.004) . CONCLUSIONS: Compressed charts can improve the visual detection of change in biological data by up to 80%. The aspect ratio of charts should be standardised to facilitate clinical pattern recognition.

Shared decision making in Australia in 2011.

The paper describes the current position of shared decision making (SDM) within the Australian healthcare system. SDM POLICY IN AUSTRALIA: Support for SDM exists through guidelines and policy documents, and is strongly endorsed by consumer organisations; however, there is no clear overarching policy framework for SDM in Australia. TOOLS FOR SDM: There are limited tools available for SDM in clinical practice. Access to tools exists through some Australian health research and consumer organisation websites but the use of tools remains idiosyncratic. IMPLEMENTATION OF SDM: Comparatively little has been achieved in the implementation of SDM in Australia. Although there is wide recognition that consumer involvement in health decisions is important, provision of resources and infrastructure to achieve it is limited, and there is no clear strategy to support implementation within the healthcare system. SDM IN THE FUTURE: Current reforms to the healthcare system may enable a more centralised approach to implementation of SDM in the future. A new federally funded consumer health information organisation may assist by providing a central point through which SDM interventions may be made available to the Australian public and the Australian Charter of Rights has the potential to provide a national framework for consumer involvement. However, priority needs to be given to SDM by both federal and state governments with greater investment in SDM research and in activities to support implementation in clinical practice.

Shared decision-making in Australia.

This paper describes the current position of shared decision-making (SDM) within the Australian health care system. Australian health care includes a mixture of public and private practice governed by both regional and national policy. Support for SDM exists through guidelines and support for interventions to increase participation. However, there is no clear overall policy framework for SDM in Australia. The result is recognition that consumer involvement is important yet there are limited resources and infrastructure, and no clear strategy to support implementation. Barriers to SDM at the macro, meso and micro levels of health care are described. Efforts to support consumer involvement to date have been targeted to the supply side of health care. There is now awareness of the need to target the demand side by educating consumers to ask for information and involvement in their health care.