The impact of health literacy on psychosocial and behavioural outcomes among people at low risk of cardiovascular disease.

This study aimed to explore the impact of health literacy on psychosocial and behavioural outcomes for people who were not at high risk of cardiovascular disease receiving a hypothetical blood pressure reading of 135/85 mmHg. We performed a secondary analysis of data from a national sample of Australians aged 40 to 50 years (n = 1318) recruited online. Health literacy was measured using the validated Newest Vital Sign (inadequate: 0-3; adequate: 4-6). Analysed outcomes included: willingness to increase exercise and accept medication; perceived severity; positive and negative affect; illness perceptions and impacts on life and motivation. Participants with inadequate levels of health literacy perceived a blood pressure reading of 135/85 mmHg to be less serious compared to individuals with adequate health literacy (Mean Difference [MD]:0.21; 95%CI 0.03-0.39; p = .024; d = 0.13), and reported less motivation to eat well (MD:0.44; 95%CI 0.31-0.58; p < .001; d = 0.38) and exercise (MD:0.43; 95%CI 0.31-0.58; p < .001; d = 0.36). However, they were more willing to accept medication (MD:0.20; 95%CI 0.07-0.34; p = .004; d = 0.17). Participants with inadequate health literacy also perceived the condition to have fewer negative impacts on aspects of life and work than individuals with adequate health literacy, but reported greater negative emotion and more negative illness perceptions (all p < .001). Tailored communication and behaviour change support may be needed when communicating blood pressure information to people with lower health literacy and not at high risk of cardiovascular disease given the differential impacts on medication (increased willingness) and healthy exercise and diet behaviours (decreased willingness) observed in this study.

Addressing the Health Literacy Needs and Experiences of Culturally and Linguistically Diverse Populations in Australia during COVID-19: A Research Embedded Participatory Approach.

Communicating health information quickly and effectively with diverse populations has been essential during the COVID-19 pandemic. However, health communication practices are often top down and poorly designed to rapidly meet diverse health literacy, cultural and contextual needs of the population. This paper describes a research and practice partnership focused on health literacy, multicultural health, and community engagement to address COVID-19 in Australia. The partnership became influential in the local and state-based response to the COVID-19 Delta outbreak in Western and South Western Sydney, an area of high cultural and socioeconomic diversity. Our approach, bringing together academic researchers and frontline health staff working with multicultural populations using a model of co-design and community engagement and action via the "4 M model," has been successful. It supported the Western Sydney community to achieve some of the highest vaccination rates in the world (>90%). There is an ongoing need to engage respectfully and responsively with communities to address specific challenges that they face and tailor communications and supports accordingly for successful pandemic management. Combining co-designed empirical research with community engagement and action ensures needs are robustly identified and can be appropriately addressed to support an effective public health response.

Assessing health literacy among adult outpatients attending allied health clinics in western sydney: A cross-sectional survey using a multidimensional instrument.

ISSUE ADDRESSED: Low health literacy disproportionately affects adults from culturally and linguistically diverse backgrounds. This study investigated the health literacy of adults attending outpatient allied health services in western Sydney, a highly diverse region in Sydney with residents from a range of cultural and linguistic backgrounds. METHODS: 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). RESULTS: 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. CONCLUSIONS: Important health literacy strengths and limitations of a diverse sample 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 sampling. SO WHAT: Data will inform future interventions to improve health literacy and health outcomes among vulnerable population groups in western Sydney.

Supporting patients to be involved in decisions about their health and care: Development of a best practice health literacy App for Australian adults living with Chronic Kidney Disease.

ISSUE ADDRESSED: Inadequate health literacy is common in those with chronic kidney disease (CKD), especially among culturally and linguistically diverse 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. METHODS: 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 diverse backgrounds and expertise, including nursing, allied health, psychology, epidemiology, nephrology and IT, as well as consumer representatives. RESULTS: 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. CONCLUSIONS: 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. SO WHAT?: 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.

Factors associated with erectile dysfunction among men living with HIV: a systematic review.

Erectile dysfunction (ED) is more prevalent among men with HIV than HIV negative men. This study systematically reviewed quantitative studies published since 1997 which sampled 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.

Clinician-patient-family decision-making and health literacy in adolescents and young adults with cancer and their families: A systematic review of qualitative studies.

OBJECTIVE: 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/practices; 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. METHODS: 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. RESULTS: 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 model3 in that AYAs draw on their family members' knowledge, skills, and practices to generate informed options and make shared decisions. Families of AYAs were found to be involved throughout all stages of decision-making. The use of health literacy skills was also found to be distributed in families, such that family members of AYAs mediate access to knowledge and use of health information in the decision-making process. CONCLUSIONS: 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.

Beyond dialysis decisions: a qualitative exploration of decision-making among culturally and linguistically diverse adults with chronic kidney disease on haemodialysis.

BACKGROUND: To date, limited research has been dedicated to exploring the experience of decision-making for chronic kidney disease (CKD) patients who have initiated dialysis and have to make decisions in the context of managing multiple illnesses. Evidence about the experience of decision-making for minority or disadvantaged groups living with CKD (e.g. culturally and linguistically diverse adults; those with lower health literacy or cognitive impairment) is also lacking. This study aimed to explore the experience of healthcare decision-making among culturally and linguistically diverse adults receiving in-centre haemodialysis for advanced CKD. METHODS: Semi-structured interviews with English or Arabic-speaking adults recruited from four large haemodialysis units in Greater Western Sydney, Australia using stratified, purposive sampling. Interviews were audio-recorded, transcribed verbatim, and analysed using the Framework method. RESULTS: Interviews were conducted with 35 participants from a range of cultural backgrounds (26 English-language; 9 Arabic-language). One quarter had limited health literacy as assessed by the Single Item Literacy Screener. Four major themes were identified from the data, highlighting that participants had limited awareness of decision-points throughout the CKD trajectory (other than the decision to initiate dialysis), expressed passivity regarding their involvement in healthcare decisions, and reported inconsistent information provision within and across dialysis units. There was diversity within cultural and linguistic groups in terms of preferences and beliefs regarding religiosity, decision-making and internalised prototypical cultural values. CONCLUSION: Without sustained effort, adults living with CKD may be uninformed about decision points throughout the CKD trajectory and/or unengaged in the process of making decisions. While culture may be an important component of people's lives, cultural assumptions may oversimplify the diverse individual differences that exist within cultural groups.

Interventions to support decision-making, health literacy and self-management in ethnic-minority adults living with chronic kidney disease: a systematic review.

Optimal patient care is directed by clinical practice guidelines, with emphasis on shared decision-making. However, guidelines-and interventions to support their implementation-often do not reflect the needs of ethnic minorities, who experience inequities in chronic kidney disease (CKD) prevalence and outcomes. This review aims to describe what interventions exist to promote decision-making, self-management and/or health literacy for ethnic-minority people living with CKD, describe intervention development and/or adaptation processes, and explore the impact on patient outcomes. Six databases were searched (MEDLINE, PsychINFO, Scopus, EMBASE, CINAHL, InformitOnline) and two reviewers independently extracted study data and assessed risk of bias. Twelve studies (n = 291 participants), conducted in six countries and targeting nine distinct ethnic-minority groups, were included. Intervention strategies consisted of: (i) face-to-face education/skills training (three studies, n = 160), (ii) patient education materials (two studies, n = unspecified), (iii) Cultural Health Liaison Officer (six studies, n = 106) or (iv) increasing access to healthcare (three studies, n = 25). There was limited description of cultural targeting/tailoring. Where written information was translated into languages other than English, the approach was exact translation without other cultural adaptation. Few studies reported on community-based research approaches, intervention adaptations requiring limited or no literacy (e.g. infographics; photographs and interviews with local community members) and the inclusion of Cultural Health Liaison Officer as part of intervention design. No community-based interventions were evaluated for their impact on clinical or psychosocial outcomes. All interventions conducted in the hospital settings reported favourable outcomes (e.g. reduction in blood pressure) compared with routine care but were limited by methodological issues.

Randomized Trial of the Choosing Wisely Consumer Questions and a Shared Decision-Making Video Intervention on Decision-Making Outcomes.

BACKGROUND: Despite widespread use, there are few studies evaluating the consumer Choosing Wisely questions. METHODS: We evaluated the impact of the Choosing Wisely questions on consumers' decision-making outcomes. Adults living in Australia were presented with a hypothetical low-value care scenario. Using a 2×2×2 between-subjects factorial design, they were randomized to either the Choosing Wisely questions ("Questions"), a shared decision-making (SDM) preparation video ("Video"), both interventions, or control (no intervention). Primary outcomes were 1) self-efficacy to ask questions and be involved in decision-making and 2) intention to engage in SDM. RESULTS: A total of 1,439 participants (45.6% with "inadequate" health literacy) were eligible and included in the analysis. Intention to engage in SDM was higher in people randomized to the Video (mean difference [MD] = 0.24 [scale 0-6], 95% confidence interval [CI]: 0.14, 0.35), Questions (MD = 0.12, 95% CI: 0.01, 0.22), and both interventions (MD = 0.33, 95% CI: 0.23-0.44, P < 0.001, d = 0.28) compared with control. Combining interventions had a greater impact than presenting the Questions alone (MD = 0.22, 95% CI: 0.11, 0.32; P < 0.001). Those who received the Video or both interventions reported lower intention to follow the low-value treatment plan without further questioning (all P < 0.05) and more positive attitudes toward SDM (all P < 0.05) compared with control. Intervention acceptability was high in all study arms (>80%), but proactive access was low (1.7%-20.8%). Compared with control, participants who received one or both interventions asked more questions that mapped to the Choosing Wisely questions (all P < .001). There were no main effects of either intervention on self-efficacy or knowledge. CONCLUSIONS: The Choosing Wisely questions and a video to promote SDM may improve intention to engage in SDM and support patients in identifying questions that align with the Choosing Wisely campaign (with some additional benefits of the video intervention). TRIAL REGISTRATION: ANZCTR376477. HIGHLIGHTS: We conducted a randomized controlled trial online with adults living in Australia to test the effectiveness of the consumer Choosing Wisely questions and a shared decision-making (SDM) preparation video.Both interventions improved intention to engage in SDM and supported participants to identify questions that align with the Choosing Wisely campaign.There were some additional benefits of the Video intervention in reducing willingness to accept low-value treatment for low-back pain without asking questions; however, neither intervention changed participants' self-efficacy to ask questions and be involved in decision-making nor affected perceptions of preparedness to engage in SDM or knowledge of rights to be involved in health care decision-making.The simple, low-cost nature of the interventions may make them appropriate for implementation within a suite of approaches to address low-value care at a population level.

A qualitative study to explore health literacy skills in older people from a disadvantaged community in Brazil.

We aim to describe older peoples' experiences of accessing, understanding, communicating and appraising health information in the context of primary care in a disadvantaged community in North-East Brazil. A qualitative interview study was conducted with 42 older people at two primary healthcare units in the city of Arapiraca, Brazil. Semi-structured interviews were guided by a qualitative health literacy instrument, translated and adapted for use in Brazil. Of the 42 participants, 30 were women and the majority (n = 32) were 60-69 years of age. Qualitative analysis identified that participants had difficulties accessing, understanding and communicating health information, often in the context of chronic disease. Few participants demonstrated an understanding about their specific health concerns, and most had difficulty explaining and interpreting health conditions more generally. Most participants indicated that they did not actively seek health information and this was compounded by physicians who were reported to provide limited information about diagnosis and treatment of health conditions. More than half of the participants reported that they did not understand medical terms included in health information, but most reported that they took no action to clarify understanding. In conclusion, we observed that conventional health literacy skills are very poor in this population of older Brazilians living in a disadvantaged community, with many resigned to not receiving health information or relying on sources other than health professionals. The findings from this study speak to the need for health literacy interventions targeting older adults in Brazil. A two-tiered approach which seeks to reduce the demands and complexities placed upon patients within the healthcare system but also targets interventions toward building the skills and capacities of individuals is likely to be most effective.

Current guidance for communicating with refugee and asylum seeker patients: An environmental scan of online resources.

BACKGROUND AND OBJECTIVES: Primary healthcare practitioners (PHPs) are often the first point of care for people seeking refuge or asylum in Australia. Communication plays a vital part in their care. The aim of this study was to identify, appraise and synthesise online resources that aim to support communication during consultations with these patients. METHOD: A systematic environmental scan of online Australian resources, using the Google search engine, was conducted. The resources were appraised and rated using a validated purpose taxonomy as well as the Patient Education Materials Assessment Tool for Printed Materials to determine understandability and actionability. RESULTS: A total of 32 unique resources were identified. On average, the resources scored better on understandability (mean 64%) than actionability (mean 49%). The resources each had between two and five purpose taxonomy types, and the proportion of the content relevant to communication ranged from 5% to 100%. DISCUSSION: There are multiple resources available to PHPs to improve their communication with refugee and asylum seeker patients. Those that were rated better overall identified the population group and had practical suggestions to help operationalise their content. This article synthesises the online resources with practical suggestions regarding continuity of care, language barriers and PHPs' responsiveness to individual and cultural considerations.

Approaches to delivering appropriate care to engage and meet the complex needs of refugee and asylum seekers in Australian primary healthcare: A qualitative study.

This study aimed to provide insight and learnings from Australian general practitioners in facilitating positive interactions with refugee and asylum seeker patients and the role they play in helping those community members engage with healthcare. We conducted semi-structured individual remote interviews with 12 general practitioners (GPs) who worked in areas with high refugee and migrant populations. Interview transcripts were coded inductively and deductively, based on the research questions, using Thematic Analysis. Extensive debriefing and discussion took place within the research team throughout data collection and analysis. Creating a culturally safe environment was an initial step taken by GPs to minimise the inherent power imbalance, in addition to applying the principles of trauma-informed care (TIC) to appropriately listen and respond to their patients' needs and individual social circumstances. GPs at times were involved in using their role to advocate on behalf of their patient and played a key role in helping build their patients' health systems literacy. This study highlights the important role that GPs play in advocating and engaging refugee and asylum seeker patients, as well as helping them navigate the healthcare system. Whilst GPs practice can be made more efficient through experience and time; to deliver the care required GPs need to provide care in response to the individual's capacity and social circumstances. Enabling time and the application of the principles of TIC and cultural safety may allow for GPs to provide the quality of care that is needed in supporting patients from refugee and asylum seeker backgrounds.

Implementing shared decision-making in Australia.

Person-centred care (PCC) and shared decision-making (SDM) are part of national clinical standards for an increasing number of areas of health care delivery. In addition to existing standards for accrediting hospitals, day surgery facilities, public dental services and medical education in Australia, new standards governing primary health care and digital mental health services have been added. Implementation and measurement of PCC and SDM to comply with standards, and training of health professionals, remain challenges for the Australian health sector. Consumer involvement in health research, policy and clinical service governance continues to increase and the National Health and Medical Research Council has begun to encourage consumer and community involvement in health and medical research. This increased consumer engagement and moves towards more PCC provision is reflected in a focus on encouraging patients to ask questions during their clinical care and supports improvements in consumer health literacy. SDM support tools are now being culturally adapted whilst a need for more systemic approaches to their development and implementation persists. With increasing resources and tools for all aspects of PCC and SDM challenges to find sustainable solutions to ensure tools are kept up to date with the best available evidence remain.

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.

A feasibility study of a best practice health literacy app for Australian adults with chronic kidney disease.

Objective: To investigate feasibility of the SUCCESS app; a cross-platform e-health innovation to improve health literacy, self-management and shared decision-making among culturally-diverse Australian haemodialysis patients. Methods: Multi-site, pre-post, mixed-methods study. Haemodialysis patients ≥18 years used the app for 12 weeks. Qualitative data from 18 interviews were thematically analysed to evaluate app acceptability. Quantitative analysis using paired sampled t-tests evaluated feasibility outcomes pertaining to recruitment, retention, data collection and app efficacy (including health literacy; decision self-efficacy; quality of life; behaviour; knowledge; confidence). Results: We successfully recruited diverse participants (N = 116; 45% born overseas; 40% low/moderate health literacy) from four Local Health Districts in Sydney, Australia. However, only 61 participants completed follow-up questionnaires. Qualitative analyses provided insights into acceptability and user engagement. Quantitative analyses showed significant improvements on the health literacy domain 'Ability to actively engage with healthcare providers' (Mean Difference [MD] = 0.2 on a 5-point scale; CI95%: 0.0-0.4; p = 0.03) and decision self-efficacy (MD = 4.3 on a 10-point scale; CI95%: 0.6-7.9; p = 0.02) after 12 weeks app use. Conclusions: The SUCCESS app was feasible and acceptable to participants. The app will be adapted to facilitate ongoing use and engagement among diverse haemodialysis patients. Innovation: This is the first health literacy-informed app to promote active participation in haemodialysis self-management and decision-making, tailored toward culturally-diverse and low health literacy groups.

Effect of health literacy interventions on pregnancy outcomes: A systematic review.

BACKGROUND: Low health literacy has been associated with worse health outcomes, but little is known about the effectiveness of health literacy interventions developed for pregnant women. AIM: To assess the effectiveness of health literacy interventions on pregnancy outcomes through a systematic review of randomised controlled trials. METHODS: Randomised controlled trials that assessed health literacy interventions designed to improve pregnancy outcomes were included. The study protocol was registered with PROSPERO (CRD42018094958). FINDINGS: Of the 1512 records initially identified, 13 studies were included. Three reported on decision-aid interventions, six on face-to-face interventions and four on written interventions (including computer-based interventions or information leaflets). The primary outcomes of interest for this systematic review were knowledge (10/13 studies) and health literacy (2/13 studies) with one study not reporting either primary outcome. A significant improvement in knowledge was found across the 10 studies, however the two studies which measured health literacy only assessed health literacy at a single time-point. Secondary outcomes including health behaviours, fetal outcomes and health-service utilisation were reported in 11 studies, with inconsistent results. DISCUSSION: Few health literacy interventions have been developed specifically for pregnant women. Although health literacy interventions have the potential to improve knowledge and pregnancy outcomes, current evidence is limited by inconsistent outcomes and measurement, and limited use of health literacy theory to inform intervention design and content. Few studies directly measured health literacy. CONCLUSION: More research is needed to properly assess the effect of health literacy interventions on pregnancy outcomes. This research should include consideration of health literacy theory in the development of the interventions.

Communication Experiences in Primary Healthcare with Refugees and Asylum Seekers: A Literature Review and Narrative Synthesis.

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.

Developing performance-based measures of health literacy: A narrative case study and checklist of considerations.

Research in health literacy is fundamentally impacted by our ability to adequately assess the construct. Although various measures of health literacy have been developed, there are few reflective discussions of the challenges and learnings from the instrument development process. This is somewhat surprising given that health literacy is a multi-dimensional and contested concept (with inherent measurement challenges), and that there are important practical considerations owing to the fact that people completing health literacy assessments may have lower general literacy (i.e. ability to read and write) and English-language skills. This paper discusses our learnings from developing a performance-based measure of parenting health literacy skills (the Parenting Plus Skills Index). The performance-based instrument is characterised by its grounding in health literacy as asset, with items spanning Nutbeam's functional, communicative and critical health literacy skills, and was designed chiefly to capture improvements resulting from health literacy skills training. This paper elucidates critical junctures in the development process, particularly regarding the conceptualisation and operationalisation of the construct. We also outline our approach to addressing practical measurement issues (e.g. administration time; item difficulty). In summarising these, we offer a 13-item checklist to inform the development of health literacy instruments for other health contexts or health conditions.

Should I Have Adjuvant Immunotherapy? An Interview Study Among Adults with Resected Stage 3 Melanoma and Their Partners.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: This information can be used by clinicians to support melanoma treatment decision making.

Melanoma is a type of skin cancer that can be deadly. Treatment for melanoma involves surgery to remove it and can be followed by extra (adjuvant) immunotherapy, a type of drug that uses the body's immune system to fight any leftover melanoma. Immunotherapy can help a person live longer but has downsides or side effects that may need a person to take daily medication for life. We spoke to patients with melanoma and their partners to learn what was important to them when deciding to have immunotherapy. Living longer was most important, followed by concerns about treatment difficulties and costs. This information will help doctors and nurses discuss treatment options for melanoma with patients and their families.

Benefits and Harms of Hypertension and High-Normal Labels: A Randomized Experiment.

BACKGROUND: Recent US guidelines lowered the threshold for diagnosing hypertension while other international guidelines use alternative/no labels for the same group (blood pressure [BP], <140/90 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. METHODS: We conducted a randomized experiment using a national sample 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. RESULTS: 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<0.001) 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. CONCLUSIONS: 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. Registration: URL: http://www.anzctr.org.au/; Unique identifier: ACTRN12618001700224.