Embedding health literacy research and best practice within a socioeconomically and culturally diverse health service: A narrative case study and revised model of co-creation.

BACKGROUND: Health literacy interventions and research outcomes are not routinely or systematically implemented within healthcare systems. Co-creation with stakeholders is a potential vehicle through which to accelerate and scale up the implementation of innovation from research. METHODS: This narrative case study describes an example of the application of a co-creation approach to improve health literacy in an Australian public health system that provides hospital and community health services to one million people from socioeconomically and culturally diverse backgrounds. We provide a detailed overview of the value co-creation stages and strategies used to build a practical and sustainable working relationship between a University-based academic research group and the local health district focussed on improving health literacy. RESULTS: Insights from our experience over a 5-year period informed the development of a revised model of co-creation. The model incorporates a practical focus on the structural enablers of co-creation, including the development of a Community of Practice, co-created strategic direction and shared management systems. The model also includes a spectrum of partnership modalities (spanning relationship-building, partnering and co-creating), acknowledging the evolving nature of research partnerships and reinforcing the flexibility and commitment required to achieve meaningful co-creation in research. Four key facilitators of health literacy co-creation are identified: (i) local champions, (ii) co-generated resources, (iii) evolving capability and understanding and (iv) increasing trust and partnership synergy. CONCLUSION: Our case study and co-creation model provide insights into mechanisms to create effective and collaborative ways of working in health literacy which may be transferable to other health fields in Australia and beyond. PATIENT AND PUBLIC CONTRIBUTION: Our co-creation approach brought together a community of practice of consumers, healthcare professionals and researchers as equal partners.

Integrating consumer perspectives into a large-scale health literacy audit of health information materials: learnings and next steps.

BACKGROUND: Health information is less effective when it does not meet the health literacy needs of its consumers. For health organisations, assessing the appropriateness of their existing health information resources is a key step to addressing this issue. This study describes novel methods for a consumer-centred large-scale health literacy audit of existing resources and reflects on opportunities to further refine the method. METHODS: This audit focused on resources developed by NPS MedicineWise, an Australian not-for-profit that promotes safe and informed use of medicines. The audit comprised 4 stages, with consumers engaged at each stage: 1) Select a sample of resources for assessment; 2) Assess the sample using subjective (Patient Education Materials Assessment Tool) and objective (Sydney Health Literacy Lab Health Literacy Editor) assessment tools; 3) Review audit findings through workshops and identify priority areas for future work; 4) Reflect and gather feedback on the audit process via interviews. RESULTS: Of 147 resources, consumers selected 49 for detailed assessment that covered a range of health topics, health literacy skills, and formats, and which had varied web usage. Overall, 42 resources (85.7%) were assessed as easy to understand, but only 26 (53.1%) as easy to act on. A typical text was written at a grade 12 reading level and used the passive voice 6 times. About one in five words in a typical text were considered complex (19%). Workshops identified three key areas for action: make resources easier to understand and act on; consider the readers' context, needs, and skills; and improve inclusiveness and representation. Interviews with workshop attendees highlighted that audit methods could be further improved by setting clear expectations about the project rationale, objectives, and consumer roles; providing consumers with a simpler subjective health literacy assessment tool, and addressing issues related to diverse representation. CONCLUSIONS: This audit yielded valuable consumer-centred priorities for improving organisational health literacy with regards to updating a large existing database of health information resources. We also identified important opportunities to further refine the process. Study findings provide valuable practical insights that can inform organisational health actions for the upcoming Australian National Health Literacy Strategy.

Systematic review of health literacy champions: who, what and how?

Health literacy is an important aspect of equitable, safe, and high-quality care. For organizations implementing health literacy initiatives, using 'change champions' appears to be a promising strategy. This systematic review aimed to identify the empirical and conceptual research that exists about health literacy champions. We conducted the systematic literature search using MEDLINE, Embase, CINAHL, Scopus, and PubMed, with additional studies identified by searching references and citations of included studies and reviews of organizational health literacy. Seventeen articles were included in the final review (case studies, n = 9; qualitative research, n = 4; quasi-experimental, n = 2; opinion articles without case studies, n = 2). Using JBI critical appraisal tools, most articles had a high risk of bias. Often champions were not the focus of the article. Champions included staff across frontline, management, and executive levels. Only five studies described training for champions. Key champion activities related to either (i) increasing organizational awareness and commitment to health literacy, or (ii) influencing organizational strategic and operational planning. The most common output was ensuring that the organization's health information materials met health literacy guidelines. Articles recommended engaging multiple champions at varying levels within the organization, including the executive level. Limited funding and resources were key barriers. Two of four articles reported positive impacts of champions on implementation of health literacy initiatives. Overall, few of the articles described health literacy champions in adequate detail. More comprehensive reporting on this implementation strategy and further experimental and process evaluation research are needed to progress this area of research. This systematic review was registered with PROSPERO (CRD42022348816).

Seeking a deeper understanding of 'distributed health literacy': A systematic review.

BACKGROUND: 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 individual's social network, rather than an exclusively individual 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. AIMS: 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. METHODS: 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. RESULTS: 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 individual'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). CONCLUSION: 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 example via conceptual distinctions between distributed health literacy and other types of social support, and empirically for example through the development of a quantitative measurement instrument. PATIENT OR PUBLIC CONTRIBUTION: This paper is a systematic review and did not involve patients or the public.

Exploring the expectations, experiences and tensions of refugee patients and general practitioners in the quality of care in general practice.

BACKGROUND: 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. METHODS: We conducted semi-structured individual 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. RESULTS: 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. CONCLUSION: 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. PATIENT OR PUBLIC CONTRIBUTION: Bilingual researchers from multicultural backgrounds and experience working with people from refugee backgrounds were consulted on study design and analysis. This study included individuals with lived experiences as refugees and asylum seekers and clinicians as participants.

Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare.

Research into health literacy and shared decision-making has largely developed along parallel, but distinct lines over the past two decades. There is little evidence that the concepts and related practice have intersected except in the most functional way, for example, to simplify shared decision-making tools by improving readability scores of decision aids. This paper presents an integrated model to strengthen and sustain patient engagement in health care by drawing on the strengths of both concepts. This includes addressing patients' skills and capacities, alongside modifications to written and verbal information. We propose an expanded model of shared decision-making which incorporates health literacy concepts and promotes two-tiered intervention methods to improve the targeting and personalization of communication and support the development of transferable health literacy skills among patients.

Health Promotion Glossary 2021.

The Health Promotion Glossary 2021 is designed to help clarify the meaning and relationship between terms commonly used in health promotion. This is the first full review and revision of the Glossary in over 20 years. It reflects the continued evolution and development of concepts since the 1998 Glossary, providing an updated overview of the many ideas which are central to contemporary health promotion. The aim of the Glossary is to facilitate communication among the professions and sectors working in health promotion. The list of terms in the Glossary is not intended to be either exhaustive or exclusive, and draws upon the wide range of disciplines from which health promotion has its origins. The definitions should not be regarded as 'the final word' on the terms included. Definitions by their very nature are restrictive, often representing summaries of complex ideas and actions. The use of terms will often be context-specific, and influenced by different social, cultural and economic conditions in countries and communities. Despite these obvious restrictions, the glossary has been assembled to enable as wide an audience as possible to understand the basic ideas and concepts which are central to the development of health promotion.

Development and evaluation of a health literacy training program for allied health professionals: A pre-post study assessing impact and implementation outcomes.

ISSUE ADDRESSED: 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. METHODS: 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). RESULTS: 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, t25  = 11.87, P < .001) and intentions (MD = 3.6, SD = 8.1, t23  = 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, t18  = 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). CONCLUSIONS: 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. SO WHAT: Staff training is particularly important in highly diverse areas where patients are disproportionately affected by low health literacy.

Qualitative insights into the experience of teaching shared decision making within adult education health literacy programmes for lower-literacy learners.

BACKGROUND: Enhancing health literacy can play a major role in improving healthcare and health across the globe. To build higher-order (communicative/critical) health literacy skills among socially disadvantaged Australians, we developed a novel shared decision making (SDM) training programme for adults with lower literacy. The programme was delivered by trained educators within an adult basic education health literacy course. OBJECTIVE: To explore the experience of teaching SDM within a health literacy programme and investigate whether communicative/critical health literacy content meets learner needs and teaching and institutional objectives. DESIGN AND PARTICIPANTS: Qualitative interview study with 11 educators who delivered the SDM programme. Transcripts were analysed using the Framework approach; a matrix-based method of thematic analysis. RESULTS: Teachers noted congruence in SDM content and the institutional commitment to learner empowerment in adult education. The SDM programme was seen to offer learners an alternative to their usual passive approach to healthcare decision making by raising awareness of the right to ask questions and consider alternative test/treatment options. Teachers valued a structured approach to training building on foundational skills, with language reinforcement and take-home resources, but many noted the need for additional time to develop learner understanding and cover all aspects of SDM. Challenges for adult learners included SDM terminology, computational numerical risk tasks and understanding probability concepts. DISCUSSION AND CONCLUSIONS: SDM programmes can be designed in a way that both supports teachers to deliver novel health literacy content and empowers learners. Collaboration between adult education and healthcare sectors can build health literacy capacity of those most in need.

Incorporating health literacy in education for socially disadvantaged adults: an Australian feasibility study.

BACKGROUND: Adult education institutions have been identified as potential settings to improve health literacy and address the health inequalities that stem from limited health literacy. However, few health literacy interventions have been tested in this setting. METHODS: Feasibility study for an RCT of the UK Skilled for Health Program adapted for implementation in Australian adult education settings. Implementation at two sites with mixed methods evaluation to examine feasibility, test for change in participants' health literacy and pilot test health literacy measures. RESULTS: Twenty-two socially disadvantaged adults with low literacy participated in the program and received 80-90 hours of health literacy instruction. The program received institutional support from Australia's largest provider of vocational education and training and was feasible to implement (100 % participation; >90 % completion; high teacher satisfaction). Quantitative results showed improvements in participants' health literacy skills and confidence, with no change on a generic measure of health literacy. Qualitative analysis identified positive student and teacher engagement with course content and self-reported improvements in health knowledge, attitudes, and communication with healthcare professionals. CONCLUSIONS: Positive feasibility results support a larger RCT of the health literacy program. However, there is a need to identify better, multi-dimensional measures of health literacy in order to be able to quantify change in a larger trial. This feasibility study represents the first step in providing the high quality evidence needed to understand the way in which health literacy can be improved and health inequalities reduced through Australian adult education programs.

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 .

What Author Instructions Do Health Journals Provide for Writing Plain Language Summaries? A Scoping Review.

BACKGROUND: Plain language summaries (PLSs) are intended for a non-expert audience in order to make health research accessible and understandable to the public. This is important because most research is written with jargon and at a high reading level. However, there is a high degree of variability in the instructions for writing PLSs, which may impede their usefulness as a tool for communicating health research to the public. OBJECTIVE: The aim of this scoping review was to conduct a detailed analysis of the author instructions for PLSs provided by leading biomedical and health journals. METHOD: We screened 534 health journals covering 11 categories selected from the InCites Journal Citation Reports linked to the top 10 non-communicable diseases. We included journals published in English that recommended the inclusion of a PLS (as defined by the National Institute for Health Research) and provided authors with text-based instructions on how it should be written. Two independent reviewers extracted data pertaining to common elements identified in author instructions, such as word count/PLS length, content, structure, purpose, wording to support plain language, and the use of jargon, acronyms and abbreviations. Other aspects of PLSs were recorded, such as the label used (e.g., plain language summary, lay summary, and patient summary), journal publisher, consumer involvement and whether the PLS is optional or mandatory. We recorded the frequency of each element and qualitative details of specific instructions. A consumer representative provided ongoing and iterative feedback on the methods, results, and reporting of this study RESULTS: Despite reviewing 534 journals across 10 non-communicable disease areas and 11 journal categories, we found only 27 (5.1%) contained text-based instructions for PLS. Of the 27 journals included in this review, most (70%) did not require a PLS. Approximately 70% of journals with PLS instructions included advice about the use of jargon, abbreviations, and acronyms. Only one journal recommended the use of a readability tool, however five noted that the reading level of the audience or readability of the PLS should be considered. Author instructions were highly heterogeneous between journals. There was inconsistency regarding the word count/PLS length (e.g., between 100 and 850 words), structure (e.g., paragraphs or bullet points), and varying levels of detail for other elements in the instructions. Although only one journal recommended consumer involvement in the development of PLSs, many recommended authors consult those who are not an expert in their field to review their summary prior to submission. CONCLUSION: The development of consistent author instructions could enhance the effectiveness and use of PLSs. Such instructions should be developed with consumers to ensure they met the needs of a lay non-expert audience.

Plain language summaries (PLSs) are short summaries of research articles written in clear, easy-to-understand language. This makes them a useful way of getting health research to a non-expert reader. Many journals suggest authors write a PLS with their article, but the instructions for them vary from journal to journal. The aim of this study was to review the author instructions for writing PLSs from health journals. We looked at 534 journals and only found 27 (5.1%) had a PLS aimed at a lay reader. We looked at the author instructions from these 27 journals and noted common details of a PLS. For example, we checked word count/PLS length, content, structure, and wording. We also recorded the label used, publisher and whether the PLS was required or not. We found most (70%) journals did not require a PLS. The instructions were different from journal to journal. For example, word count/PLS length ranged from 100 to 850 words and the suggested structure was a mix of paragraph format and bullet points. About 70% of journals gave advice about the use of jargon, abbreviations and acronyms. Only one journal suggested the use of a readability tool, but five thought the reading level of the reader or readability of the PLS was important. Only one journal suggested consumers be involved in writing a PLS, however many suggested the PLSs be checked by someone who is not an expert in the field. PLSs could be improved with help from consumers to make instructions that are more standard.

Shifts in Diabetes Health Literacy Policy and Practice in Australia-Promoting Organisational Health Literacy.

Improving organisational health literacy ensures people can navigate, understand and use essential health information and services. However, systematic reviews have identified limited evidence for practical approaches to implementing such organisational change, particularly at a national level. This study aimed to (a) investigate the approach taken by an Australian national diabetes organisation-Diabetes Australia, as the administrator of the National Diabetes Services Scheme (NDSS)-to improve organisational health literacy over a 15-year-period and (b) examine the impact of organisational changes on the health literacy demands of health information. We performed an environmental scan, examining the websites of the NDSS, Diabetes Australia and the Australian government for reports and position statements describing organisational health literacy policies and practices between 2006 and 2021. The Patient Education Materials Assessment Tool (PEMAT) was applied to consecutively published NDSS diabetes self-care fact sheets (n = 20) to assess changes in the health literacy demands (understandability and actionability) of these fact sheets over the same period. We identified nine policies resulting in 24 health literacy practice changes or projects between 2006 and 2021, applied using a streamlined incremental approach and group reflexivity. The incremental approach focused on (1) increasing audience reach, (2) consistency and branding, (3) person-centred language and (4) the understandability and actionability of health information. The PEMAT scores of fact sheets improved between 2006 and 2021 for understandability (53% to 79%) and actionability (43% to 82%). Diabetes Australia's information development process leveraging national policies, employing an incremental approach and group reflexivity has improved the health literacy demands of diabetes information and serves as a template for other organisations seeking to improve their organisational health literacy.

Multiple Automated Health Literacy Assessments of Written Health Information: Development of the SHeLL (Sydney Health Literacy Lab) Health Literacy Editor v1.

Producing health information that people can easily understand is challenging and time-consuming. Existing guidance is often subjective and lacks specificity. With advances in software that reads and analyzes text, there is an opportunity to develop tools that provide objective, specific, and automated guidance on the complexity of health information. This paper outlines the development of the SHeLL (Sydney Health Literacy Lab) Health Literacy Editor, an automated tool to facilitate the implementation of health literacy guidelines for the production of easy-to-read written health information. Target users were any person or organization that develops consumer-facing education materials, with or without prior experience with health literacy concepts. Anticipated users included health professionals, staff, and government and nongovernment agencies. To develop this tool, existing health literacy and relevant writing guidelines were collated. Items amenable to programmable automated assessment were incorporated into the Editor. A set of natural language processing methods were also adapted for use in the SHeLL Editor, though the approach was primarily procedural (rule-based). As a result of this process, the Editor comprises 6 assessments: readability (school grade reading score calculated using the Simple Measure of Gobbledygook (SMOG)), complex language (percentage of the text that contains public health thesaurus entries, words that are uncommon in English, or acronyms), passive voice, text structure (eg, use of long paragraphs), lexical density and diversity, and person-centered language. These are presented as global scores, with additional, more specific feedback flagged in the text itself. Feedback is provided in real-time so that users can iteratively revise and improve the text. The design also includes a "text preparation" mode, which allows users to quickly make adjustments to ensure accurate calculation of readability. A hierarchy of assessments also helps users prioritize the most important feedback. Lastly, the Editor has a function that exports the analysis and revised text. The SHeLL Health Literacy Editor is a new tool that can help improve the quality and safety of written health information. It provides objective, immediate feedback on a range of factors, complementing readability with other less widely used but important objective assessments such as complex and person-centered language. It can be used as a scalable intervention to support the uptake of health literacy guidelines by health services and providers of health information. This early prototype can be further refined by expanding the thesaurus and leveraging new machine learning methods for assessing the complexity of the written text. User-testing with health professionals is needed before evaluating the Editor's ability to improve the health literacy of written health information and evaluating its implementation into existing Australian health services.

Helping patient educators meet health literacy needs: End-user testing and iterative development of an innovative health literacy editing tool.

Objective: The Sydney Health Literacy Lab (SHeLL) Editor is an online text-editing tool that provides real-time assessment and feedback on written health information (assesses grade reading score, complex language, passive voice). This study aimed to explore how the design could be further enhanced to help health information providers interpret and act on automated feedback. Methods: The prototype was iteratively refined across four rounds of user-testing with health services staff (N = 20). Participants took part in online interviews and a brief follow-up survey using validated usability scales (System Usability Scale, Technology Acceptance Model). After each round, Yardley's (2021) optimisation criteria guided which changes would be implemented. Results: Participants rated the Editor as having adequate usability (M = 82.8 out of 100, SD = 13.5). Most modifications sought to reduce information overload (e.g. simplifying instructions for new users) or make feedback motivating and actionable (e.g. using frequent incremental feedback to highlight changes to the text altered assessment scores). Conclusion: terative user-testing was critical to balancing academic values and the practical needs of the Editor's target users. The final version emphasises actionable real-time feedback and not just assessment. Innovation: The Editor is a new tool that will help health information providers apply health literacy principles to written text.

Integrating the Choosing Wisely 5 Questions into Family Meetings in the Intensive Care Unit: A Randomized Controlled Trial Investigating the Effect on Family Perceived Involvement in Decision-Making.

Family members often act as surrogate decision makers for patients in the intensive care unit (ICU). The use of printed prompts may assist with families feeling empowered to fulfill this role. Prospective, randomized controlled trial in 3 ICUs in Western Australia. In the intervention arm, families received the Choosing Wisely 5 questions as printed prompts prior to a family meeting, and the control arm did not receive prompts. The primary outcome was family perceived involvement in decision-making. Outcomes were measured using a survey. Sixty families participated in the study. The majority of families (87.1% control, 79.3% intervention; P = .334) reported feeling "very included" in decision-making. There was no difference in secondary outcomes, including minimal uptake of the questions by the intervention arm. This has been the first randomized trial evaluating the use of a decision-making tool for families in the ICU. Despite ceiling effects in outcome measures, these results suggest room for future study of the Choosing Wisely 5 questions in the ICU.

Type 2 diabetes self-management schemas across diverse health literacy levels: a qualitative investigation.

OBJECTIVE: The aim of this study was to explore how people with diabetes and diverse health literacy levels conceptualise their experience and efforts to engage in self-management behaviours (their self-management 'schemas'). DESIGN: A qualitative design was applied. METHODS: Twenty-six people in Sydney, Australia, took part in semi-structured interviews, which were audio-recorded and coded using Framework analysis. RESULTS: 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. CONCLUSION: 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.

The challenges with managing polycystic ovary syndrome: A qualitative study of women's and clinicians' experiences.

OBJECTIVE: To explore clinicians' and women's views and experiences with managing polycystic ovary syndrome (PCOS). METHODS: 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. RESULTS: 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. CONCLUSIONS: This is the first study to explore both clinicians' and women's experiences with managing PCOS, illustrating several challenges in managing this heterogeneous condition. PRACTICE IMPLICATIONS: 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.