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BackgroundDigital health literacy has emerged as a critical skill set to navigate the digital age. ObjectiveThis review sought to broadly summarize the literature on associations between digital health literacy and (1) sociodemographic characteristics, (2) health resource use, and (3) health outcomes in the general population, patient groups, or parent or caregiver groups. MethodsA rapid review of literature published between January 2016 and May 2022 was conducted through a search of 4 web-based databases. Articles were included on the basis of the following keywords: “measured digital health literacy,” “digital literacy,” “ehealth literacy,” “e-health literacy,” “electronic health literacy,” or “internet health literacy” in adult populations; participants were from countries where English was the primary language; studies had to be cross-sectional, longitudinal, prospective, or retrospective, and published in English. ResultsThirty-six articles met the inclusion criteria. Evidence on the associations between digital health literacy and sociodemographic characteristics varied (27/36, 75% included studies), with higher education (16/21, 76.2% studies that examined the association) and younger age (12/21, 57.1% studies) tending to predict higher digital health literacy; however, other studies found no associations. No differences between genders were found across the majority of studies. Evidence across ethnic groups was too limited to draw conclusions; some studies showed that those from racial and ethnic minority groups had higher digital health literacy than White individuals, while other studies showed no associations. Higher digital health literacy was associated with digital health resource use in the majority of studies (20/36, 55.6%) that examined this relationship. In addition, higher digital health literacy was also associated with health outcomes across 3 areas (psychosocial outcomes; chronic disease and health management behaviors; and physical outcomes) across 17 included studies (17/36, 47.2%) that explored these relationships. However, not all studies on the relationship among digital health literacy and health resource use and health outcomes were in the expected direction. ConclusionsThe review presents mixed results regarding the relationship between digital health literacy and sociodemographic characteristics, although studies broadly found that increased digital health literacy was positively associated with improved health outcomes and behaviors. Further investigations of digital health literacy on chronic disease outcomes are needed, particularly across diverse groups. Empowering individuals with the skills to critically access and appraise reliable health information on digital platforms and devices is critical, given emerging evidence that suggests that those with low digital health literacy seek health information from unreliable sources. Identifying cost-effective strategies to rapidly assess and enhance digital health literacy capacities across community settings thus warrants continued investigation.

Abstract Objective A digital divide exists for people from rural and regional areas where they are less likely and confident to engage in digital health technologies. The aim of this study was to evaluate the digital health literacy and engagement of people from rural and regional communities, with a focus on identifying barriers and facilitators to using technology. Results Forty adults living in rural/regional areas completed a survey consisting of the eHealth Literacy Scale (eHEALS) with additional items surveying participants’ experience with a range of digital health technologies. All participants had used at least one digital health technology. Most (80%) participants had an eHEALS score of 26 or above indicating confidence in online health information. Commonly reported barriers to digital health technology use centred on product complexity and reliability, awareness of resources, lack of trust, and cost. Effective digital health technology use is becoming increasingly important, there may be a need to prioritise and support people with lower levels of digital health literacy. We present opportunities to support community members in using and accessing digital health technology.

Abstract Background Supporting the health and wellbeing of Aboriginal and Torres Strait Islander peoples (hereafter respectfully referred to as First Nations peoples) is a national priority for Australia. Despite immense losses of land, language, and governance caused by the continuing impact of colonisation, First Nations peoples have maintained strong connections with traditional food culture, while also creating new beliefs, preferences, and traditions around food, which together are termed foodways. While foodways are known to support holistic health and wellbeing for First Nations peoples, the pathways via which this occurs have received limited attention. Methods Secondary data analysis was conducted on two national qualitative datasets exploring wellbeing, which together included the views of 531 First Nations peoples (aged 12–92). Thematic analysis, guided by an Indigenist research methodology, was conducted to identify the pathways through which foodways impact on and support wellbeing for First Nations peoples. Results and conclusions Five pathways through which wellbeing is supported via foodways for First Nations peoples were identified as: connecting with others through food; accessing traditional foods; experiencing joy in making and sharing food; sharing information about food and nutrition; and strategies for improving food security. These findings offer constructive, nationally relevant evidence to guide and inform health and nutrition programs and services to harness the strengths and preferences of First Nations peoples to support the health and wellbeing of First Nations peoples more effectively.

Summary: It is widely acknowledged that a successful clean-energy transition is instrumental to climate change mitigation. However, clean-energy researchers and engineers rarely address the degree to which the success and consequences of the transition depend on its incorporation of equity and justice principles. In this review, we draw on inter-related literatures to discuss failures resulting from equity-myopic approaches to clean-energy research, development, demonstration, deployment, dispatch, and disposal (R&D5) and explore opportunities, tools, and frameworks for energy practitioners to employ when attempting to incorporate justice into their work. We find that opportunities to incorporate energy justice are greatest at the earliest stages of the R&D5 continuum. As inequities persist into later stages of R&D5, they may lead to maladaptive technology development and the inequitable impacts thereof. We thereby articulate how embedding principles of energy justice throughout R&D5 not only enables a successful clean-energy transition but also ensures that the transition is sustainable.

People who use augmentative and alternative communication (AAC) are frequently excluded from research, yet their voices can significantly enhance the applicability, acceptability, and translation of qualitative research findings. Accessible and adapted research methods welcome and empower participants who use AAC, and enable meaningful involvement. In this article, we describe the collaborative development of a framework to conceptualise inclusive research and aspects of an accompanying inclusive research toolkit. The framework identifies balancing power as a critical factor, primarily achieved by ensuring that research methods and materials are accessible to people who use AAC. We propose that this is achieved through three interacting elements: collaboration with AAC users, skills and knowledge to achieve accessibility, and ensuring adequate time is available to achieve involvement. We identify five areas where applying these elements has impact for AAC users: recruiting AAC users, working with communication supporters, adapting research methods, securing ethics approval, and consent. In presenting the framework, we demonstrate how qualitative researchers can foster a research environment that values and actively includes AAC users, ultimately advancing the field towards more comprehensive and inclusive research practices. While our work is situated in the cerebral palsy and AAC communities, our proposed framework and toolkit can be applied by researchers seeking perspectives from individuals with communication disabilities more broadly. We have created a corresponding plain language video of this article as an additional means of optimising accessibility of the content. See supplemental material .

Embedding principles of energy justice throughout all aspects of clean energy technology research and development (R&D) can facilitate a more just energy transition; yet gaps remain in our understanding of how to best integrate energy justice from the earliest R&D stages. The Justice Underpinning Science and Technology Research (JUST-R) metrics framework has been developed to enable early-stage energy researchers to assess and address justice considerations associated with their research, but the impacts of the framework, and others like it, have yet to be evaluated. This study seeks to evaluate the JUST-R metrics framework in terms of its effectiveness and appeal to researchers engaged in early-stage technical R&D using qualitative analyses of documents and workshop transcripts. We find that the metrics framework helps researchers identify problems and potential solutions surrounding the energy justice implications of their work and spurs a change in perspective for researchers, but, simultaneously, there is no evidence of solution follow-through within the evaluation timeframe. Greater institutional support, specialization to research areas, knowledge of energy justice fundamentals, and earlier incorporation of energy justice considerations in research projects arise as factors needed to aid continued use of the framework and pursuit of identified solutions. This evaluation protocol and these findings can serve as a guide for improving other frameworks with similar goals of encouraging sociotechnical engagement in early-stage energy R&D.

Little is known about the fear of cancer recurrence (FCR) severity, coping strategies, or quality of life impacts for Indigenous populations. This mixed-methods study aimed to (1) quantify FCR levels among Indigenous Australian (i.e., Aboriginal and Torres Strait Islander) breast cancer survivors and (2) qualitatively explore experiences of FCR and the coping strategies used. Nineteen participants completed the Fear of Cancer Recurrence Inventory (FCRI); ten also completed a semi-structured interview. Interview transcripts were thematically analysed. Average FCR levels (Mean FCRI Total Score = 71.0, SD = 29.8) were higher than in previous studies of Australian breast cancer survivors, and 79% of participants reported sub-clinical or greater FCR (FCRI-Short Form ≥ 13/36). Qualitative themes revealed the pervasiveness of FCR, its impact on family, and exacerbation by experience/family history of comorbid health issues. Cultural identity, family, and a resilient mindset aided coping skills. Greater communication with healthcare providers about FCR and culturally safe and appropriate FCR care were desired. This study is the first to assess FCR among Aboriginal and Torres Strait Islander breast cancer survivors, extending the limited literature on FCR in Indigenous populations. Results suggest FCR is a significant issue in this population and will inform the development of culturally appropriate interventions to aid coping and improve quality of life.

Abstract Background Sarcopenia is an age‐associated skeletal muscle condition characterized by low muscle mass, strength, and physical performance. There is no international consensus on a sarcopenia definition and no contemporaneous clinical and research guidelines specific to Australia and New Zealand. The Australian and New Zealand Society for Sarcopenia and Frailty Research (ANZSSFR) Sarcopenia Diagnosis and Management Task Force aimed to develop consensus guidelines for sarcopenia prevention, assessment, management and research, informed by evidence, consumer opinion, and expert consensus, for use by health professionals and researchers in Australia and New Zealand. Methods A four‐phase modified Delphi process involving topic experts and informed by consumers, was undertaken between July 2020 and August 2021. Phase 1 involved a structured meeting of 29 Task Force members and a systematic literature search from which the Phase 2 online survey was developed (Qualtrics). Topic experts responded to 18 statements, using 11‐point Likert scales with agreement threshold set a priori at >80%, and five multiple‐choice questions. Statements with moderate agreement (70%–80%) were revised and re‐introduced in Phase 3, and statements with low agreement (80%) were confirmed by the Task Force in Phase 4. Conclusions The ANZSSFR Task Force present 17 sarcopenia management and research recommendations for use by health professionals and researchers which includes the recommendation to adopt the EWGSOP2 sarcopenia definition in Australia and New Zealand. This rigorous Delphi process that combined evidence, consumer expert opinion and topic expert consensus can inform similar initiatives in countries/regions lacking consensus on sarcopenia.

Background There is a long history of research being conducted on Aboriginal and Torres Strait Islander peoples that has offered questionable benefit but occasioned great distress and distrust. Using research methods that are suitable and acceptable to Aboriginal and Torres Strait Islander peoples is a critically important step towards restoring trust and improving the accessibility and relevancy of research that better addresses the needs of Aboriginal and Torres Strait Islander peoples. The current research aims to qualitatively evaluate Aboriginal and Torres Strait Islander peoples’ perceptions of the suitability and acceptability of engaging in a think-aloud interview embedded in an individual yarn; a think-aloud yarn. Methods We employed the think-aloud method as part of the larger What Matters 2Adults study . Aboriginal and Torres Strait Islander participants were engaged in a think-aloud yarn, then immediately following, a follow-up yarn to explore the acceptability of the think-aloud method. The follow-up yarns were audio recorded, transcribed verbatim, and analysed utilising reflexive thematic analysis with an Indigenous epistemological lens. Results A total of 17 Aboriginal and Torres Strait Islander adults participated in our study. Participants reported that taking part in the think-aloud yarn was acceptable, not difficult and was less onerous than writing down their thoughts. Engaging participants in a social yarn before the think-aloud research yarn ensured they were comfortable verbalising and assured them that the process was confidential. Thinking out loud gave participants the opportunity to reflect and to think critically about their responses. Some found that by thinking out loud they were able to better understand the statements in their own mind and felt they were therefore able to provide a more authentic response. Because of these benefits, participants conveyed that the think-aloud yarn is a vitally important component in testing items and developing measures for Aboriginal and Torres Strait Islander people. Conclusions Overall, our study found that the think-aloud yarn is acceptable to Aboriginal and Torres Strait Islander peoples and therefore a suitable method for use in studies that involve them.

Photovoice is an emerging qualitative research method used to engage community members in research that highlights their lived experiences and initiate change. Photovoice offers potential benefits to research conducted by and with Indigenous communities through privileging Indigenous knowledge and perspectives. There is a lack of synthesized evidence about the usage, benefits, and challenges of conducting Photovoice research by and with Indigenous communities, which this systematic methods review aims to address. We specifically focus on Indigenous young people in Canada, Australia, Aotearoa New Zealand, and the United States. Five databases were searched systematically for articles including keywords for ‘Indigenous’ and ‘Photovoice’. Empirical studies and methods papers reporting the use of Photovoice with majority cohorts of young Indigenous participants were included. Relevant data were extracted and Photovoice methods analysed using an integrative approach. Database searches yielded 1402 articles, with 109 reviewed in full and 41 included in the review. These articles represented 37 unique studies, with most from Canada ( n = 17), and the United States ( n = 14). Our analysis revealed great variability in how Photovoice has been applied across studies with Indigenous young people. However, some notable commonalities include recruitment of participants via community networks, and participant involvement in data collection and analysis. The potential benefits associated with using Photovoice with Indigenous young people included: fostering participant autonomy and authority; photography being familiar and fun; the visual medium being culturally appropriate for Indigenous peoples; and the method being effective for engaging the whole community. Challenges associated with Photovoice included: engagement difficulties between researchers and participants; issues with photography; and ethical complexities. These findings suggest that Photovoice is an appropriate and largely effective method to engage young Indigenous people in research. However, there are logistical and ethical issues associated with the method that require careful consideration.

Abstract Objective: This study aimed to describe Aboriginal and Torres Strait Islander women's views of self‐collection introduced in the renewed National Cervical Screening Program. Methods: A total of 79 Aboriginal and/or Torres Strait Islander women (50 screened in previous five years, 29 under‐screened) from five clinics across three Australian states/territories participated. Topics discussed were perceptions of self‐collection, the instruction card and suggestions for implementing self‐collection. We employed yarning (a qualitative method), which established relationships and trust between participants and researchers to facilitate culturally safe conversations. Transcripts were analysed thematically. Results: Most women were unaware of self‐collection before the yarn but found it to be an acceptable way to participate in cervical screening. Women perceived self‐collection would be convenient, provide a sense of control over the screening experience, and maintain privacy and comfort. The instructions were perceived to be simple and easy to follow. Women had concerns about collecting the sample correctly and the accuracy of the sample (compared to clinician‐collected samples). Conclusions: Self‐collection is acceptable to Aboriginal and Torres Strait Islander women. Implications for public health: Given the inequitable burden of cervical cancer experienced by Aboriginal and Torres Strait Islander women, self‐collection is likely to significantly improve participation and ultimately improve cervical cancer outcomes.

Abstract Objective: Quantify change in wellbeing and health‐related quality‐of‐life (HRQoL) in Aboriginal and Torres Strait Islander adults pre and post Australia's initial COVID‐19 lockdown. Methods: Aboriginal and Torres Strait Islander adults completed an online survey at Time 1 (October–November 2019; before the initial Australian COVID‐19 outbreak) and Time 2 (August–September 2020; after the first Australian lockdown). We assessed wellbeing using a visual analogue scale (VAS) and HRQoL using the Assessment of Quality of Life (AQoL‐4D) instrument. Participants who completed both surveys (n=42) were included to quantify change in outcomes over time and by comorbidity and demographic factors. Results: Mean reduction in wellbeing over time was 6.4 points (95%CI −14.2 to 1.4) and was associated with age (18–54yo), financial instability and mental health comorbidity. Mean reduction in HRQoL over time was 0.06 (95%CI −0.12 to 0.01) and was associated with financial instability, high physical comorbidity level and mental health comorbidity. Conclusions: Aboriginal and Torres Strait Islanders aged 18–54yo, who were financially unstable or had elevated comorbidity during COVID lockdowns experienced greater reductions in wellbeing and HRQoL. Implications for public health: As the COVID‐19 pandemic continues in Australia, both urgent and forward planning is needed, especially for the priority groups identified.

Abstract Background While web conferencing technologies are being widely used in communication and collaboration, their uptake in conducting research field work has been relatively slow. The benefits that these technologies offer researchers for engaging with hard-to-reach populations are beginning to be recognised, however, the acceptability and feasibility of using web conferencing technology to engage Aboriginal and Torres Strait Islander young people in research is unknown. Objective This study aims to evaluate whether the use of web conferencing to engage Aboriginal and Torres Strait Islander young people in research is an acceptable and feasible alternative to conventional face-to-face methods. Methods Aboriginal and Torres Strait Islander young people aged between 18 and 24 years were recruited via emails, flyers and snowballing to participate in an Online Yarning Circle (OYC) about wellbeing conducted via web conferencing. Five young Aboriginal and Torres Strait Islander Australians were trained as peer facilitators and each conducted one or more OYCs with support from an experienced Aboriginal and Torres Strait Islander researcher. The OYCs were recorded and the researchers conducted post-OYC interviews with the facilitators. OYC recordings, facilitator interviews and researchers’ reflections about the method were analysed to assess acceptability and feasibility for use with this population. Results 11 OYCs were conducted with 21 participants. The evaluation focused on (a) acceptability of the method for participants and facilitators and (b) feasibility of data collection method and procedures for use in research. Our evaluation revealed good acceptability and feasibility of the method, with only minor challenges experienced, which were predominantly logistical in nature and related to scheduling, obtaining documentation of consent, and technical issues. These challenges were offset by the greater control over the level of engagement that was comfortable for individual participants and the greater ease with which they felt they could withdraw from participating. This shift in the traditional researcher-participant power dynamic was recognised by both participants and peer facilitators and was regarded as a support for Aboriginal and Torres Strait Islander young people’s participation in research. Conclusions The use of web conferencing to engage Aboriginal and Torres Strait Islander young people in research offers an acceptable and feasible alternative to face-to-face research methods. The benefits conferred by these technologies associated with yielding greater control and power to the research participant has broad relevance to research with marginalised populations.

Abstract Objective: To investigate perspectives of primary health care providers (HCPs) on providing cervical screening for Aboriginal and Torres Strait Islander women, who experience a higher burden of cervical cancer than other Australian women. Methods: Semi‐structured interviews with 13 HCPs from four Australian Indigenous primary health care centres (PHCCs). Transcripts were thematically analysed. Results: HCPs discussed the need to approach cervical screening with sensitivity to women's emotional and cultural needs and sustaining relationships built on trust and respect. HCPs reported challenges in promoting screening to Aboriginal and Torres Strait Islander women due to cumbersome systems, competing clinical priorities, workforce capacity limitations and specific challenges associated with implementing the renewed National Cervical Screening Program. Conclusions: In practice, HCPs experience several challenges to delivering cervical screening. Understanding HCPs’ perspectives on their approach to cervical screening delivery, and the systems in which this occurs, can help to ensure that they receive adequate support and resources to deliver cervical screening to Aboriginal and Torres Strait Islander women. Implications for public health: It is important that HCPs adopt a multi‐faceted, person‐centred approach to cervical screening that is responsive to women's needs and that works synchronously with supportive PHCC services and systems and the National Cancer Screening Register.

Abstract Background Measurement of patients’ healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers. Methods A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified. Results No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics ‘partially’ captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable. Conclusions Existing tools are likely to miss key aspects of Indigenous peoples’ experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.

Objective The specialty of emergency medicine and recognition of the need for emergency care continue to grow globally. The specialty and emergency care systems vary according to context. This study characterizes the specialty of emergency medicine around the world, trends according to region and income level, and challenges for the specialty. Methods We distributed a 56‐question electronic survey to all members of the American College of Emergency Physicians International Ambassador Program between March 2019 and January 2020. The Ambassador Program leadership designed the survey covering specialty recognition, workforce, system components, and emergency medicine training. We analyzed results by country and in aggregate using SAS software (SAS Institute Inc). We tested the associations between World Bank income group and number of emergency medicine residency‐trained physicians (RTPs) and emergency medicine specialty recognition using non‐parametric Fisher's exact testing. We performed inductive coding of qualitative data for themes. Results Sixty‐three out of 78 countries’ teams (80%) responded to the survey. Response countries represented roughly 67% of the world's population and included countries in all World Bank income groups. Fifty‐four countries (86%) recognized emergency medicine as a specialty. Ten (16%) had no emergency medicine residency programs, and 19 (30%) had only one. Eight (11%) reported having no emergency medicine RTPs and 30 (48%) had 5 emergency medicine RTPs per 100,000 population, all high income. All 5 low‐income countries in the sample had

Abstract Background Poorer cancer outcomes of Indigenous Australians in Australia’s Northern Territory (NT) compared with their non-Indigenous counterparts are partially due to diminished access to cancer treatment services (CTS). Accessibility of health care is a multidimensional construct, including physical, logistical, psychosocial and cultural dimensions. While previous research has identified specific areas of reduced access to CTS for Indigenous Australians, the higher burden of cancer borne by Indigenous Australians warrants a more comprehensive understanding of access to CTS in the NT. The purpose of this study was to explore and map the accessibility of CTS for Indigenous Australians in the NT and to identify key access barriers. Methods This predominantly qualitative study, complemented by a descriptive quantitative component, explored and mapped the accessibility of one CTS (CTS-NT) that services a large number of Indigenous Australians in the NT. Patient perspectives were obtained via secondary analysis of data from 75 face-to-face interviews with Indigenous Australian adults attending the CTS-NT. Care provider perspectives were obtained via primary analysis of data from 29 face-to-face interviews with care providers and staff working at CTS-NT. Data were analysed to identify issues of accessibility informed by Leveque and colleagues’ conceptual framework of access to health care, which comprises five dimensions of accessibility of the health service and the ability of Indigenous patients to interact with these dimensions to generate access. Applied thematic analysis was conducted on the qualitative data and descriptive analysis was conducted on the quantitative data. Results The analysis of the patient and care provider reports identified multiple access barriers across all dimensions including: inadequate preparation of Indigenous patients for treatment; delayed and complicated commencement of treatment; dislocation from home; competing priorities; scarcity of Indigenous care providers and staff; lack of culturally-relevant care; challenges associated with language, accommodation, transport and finance; and disjointed and fraught relationships with care providers. These barriers posed significant challenges to Indigenous patients maintaining their engagement with treatment. Conclusions This study provides a valuable snapshot of the barriers facing this population across the dimensions of health care access. Urgent action in addressing these issues is required at individual, service and state levels.

Resilience of power systems is already a key issue that is getting frequent attention all over the world. It is useful to analyze resilience issues not only for bulk supply, but at all levels including at a customer level. This is because distributed energy resources can play a prominent role in enhancing resilience. Although the literature on planning models, tools and data for bulk supply and distribution systems have expanded in recent years, customer-centric planning, e.g., for an individual household, is yet to receive adequate attention. Although solar PV and battery storage at a household level have been analyzed, how these resources can be optimally combined, together with grid supply, from a resilience perspective is the focus of this study. The study demonstrates how a conceptual framework can be developed to show the trade-off between system costs and resilience including its dimensions such as duration, depth and frequency of service outages. A planning model is developed that incorporates multiple facets of resilience and individual customer preferences. The model considers power system resilience explicitly as a constraint. The model is implemented for a household level case study in Miami, Florida. The results show there are complex trade-offs among different dimensions of resilience. The study demonstrates how combined resilience metrics can be formulated and evaluated using the proposed least-cost planning model at a household level to optimize grid supply together with solar, battery storage and diesel generators. The model allows a planner to directly embed a resilience standard to drive the optimal supply mix. These concepts and the modeling construct can also be applied at other levels of planning, including community level and bulk supply system planning.

Abstract Background Understandings of health and wellbeing are culturally bound. Many Aboriginal and Torres Strait Islander people perceive wellbeing and quality of life (QOL) differently from the Western biomedical models of health underpinning existing QOL instruments. Any instrument to measure the wellbeing of Aboriginal and Torres Strait Islander people should be culturally appropriate and safe, include relevant dimensions, and be informed by their own values and preferences. Existing QOL instruments do not meet these standards. This study will generate a new preference-based wellbeing measure, WM2Adults, for Aboriginal and Torres Strait Islander adults, underpinned by their values and preferences. Methods A mixed methods approach will be used; we will employ decolonising methodologies, privilege Aboriginal and Torres Strait Islander voices and perspectives, and adopt a strengths-based approach rather than a deficit lens. Yarning Circles will be conducted with Aboriginal and Torres Strait Islander people across Australia. A candidate item pool will be developed from these data, on which psychometric analysis and validity testing will be undertaken to develop a descriptive system. Following finalisation of the descriptive system, wellbeing states will be valued using a quantitative preference-based approach (best-worst scaling) with a diverse sample of Aboriginal and Torres Strait Islander adults (n = 1000). A multinomial (conditional) logit framework will be used to analyse responses and generate a scoring algorithm for the new preference-based WM2Adults measure. Discussion The new wellbeing measure will have wide applicability in assessing the effectiveness and cost-effectiveness of new programs and services for Aboriginal and Torres Strait Islander people. Results will be disseminated through journals, conferences and policy forums, and will be shared with Aboriginal and Torres Strait Islander communities, organisations and research participants.

Globally, a growing body of evidence has reported significant disparities in cancer outcomes between Indigenous and non-Indigenous people. Although some effort is being made to address these disparities, relatively little attention has been directed toward identifying and focusing on the psychosocial aspects of cancer care for Indigenous patients, which are critical components in improving cancer care and outcomes. The purpose of this article is to describe the results of a scoping review of the psychosocial aspects of cancer care for Indigenous people. We highlight considerations in undertaking research in this field with Indigenous people and the implications for clinical practice.

Aboriginal and Torres Strait Islander women have lower participation in Australia's National Cervical Screening Program than other Australian women. Under-screened (including never screened) women's voices are rarely heard in research evidence, despite being a priority group for interventions to increase cervical screening participation. This study aimed to describe under-screened Aboriginal and Torres Strait Islander women's perspectives on cervical screening. Participants were 29 under-screened (women who had either never screened, had not screened in the previous five years or had recently screened in the past three months after more than five years) Aboriginal and Torres Strait Islander women from five communities across three states/territories. Female Aboriginal and Torres Strait Islander researchers Yarned with women about why they did not participate in screening and how to improve screening. Yarning is an Indigenous qualitative research method in which relationships and trust facilitate culturally safe conversation. Transcripts were analysed thematically. The proportion of eligible women who screened within 30 days after the Yarn was calculated. We identified four themes describing how the harms outweighed the benefits of cervical screening for under-screened women. These were: 1) distress, discomfort, and trauma; 2) lack of privacy and control; 3) complicated relationships with health care providers (HCPs); and 4) pressured, insensitive, and/or culturally unsafe communication from HCPs. Under-screened women who had recently screened had maintained privacy and control through self-collection and had experienced trauma-informed and empathetic care from their HCPs. While we cannot unequivocally attribute women's subsequent participation in screening to their involvement in this study, it is notable that one third of eligible under-screened women were screened within 30 days after the Yarn. Enhancing privacy, implementing trauma-informed approaches to care and sensitivity to the clinician-client relationship dynamics could enhance women's sense of comfort in, and control over, the screening procedure. The opportunity to Yarn about cervical screening and self-collection may address these issues and support progress toward cervical cancer elimination in Australia.

Interstitial cystitis/bladder pain syndrome (IC/BPS) is a debilitating condition affecting approximately 3% of the female population. IC/BPS is defined as an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms for more than six weeks duration, in the absence of infection or other identifiable cause. This condition is known to have a profound negative impact on quality of life. There are few well-studied treatment options and no cure for this condition, which is therefore challenging to treat. The purpose of this narrative review is to summarise the contemporary literature, including the Canadian Urological Association (CUA) and American Urological Association (AUA) guidelines, on various treatment options that exist for IC/BPS, including conservative therapies, oral therapies, intravesical therapies, and more invasive surgical options. Most importantly, this review highlights the need for an individualised, multimodal approach to the treatment of IC/BPS.

Child-directed speech (CDS), which can help children learn new words, has been rigorously studied among infants and parents in home settings. Yet, far less is known about the CDS that teachers use in classrooms with toddlers and children’s responses, an important question because many toddlers, particularly in high-need communities, attend group-care settings. This exploratory study examines the linguistic environment during teacher-led book readings in American Early Head Start classrooms serving 2-year-olds from households in poverty. Seven teachers in four classrooms were trained to emphasize target words while reading story and informational books. We first analyzed the nature and quality of their book readings from a macro-level, exploring global instructional quality [Classroom Assessment Scoring System (CLASS)] and linguistic complexity [i.e., diversity of vocabulary (D) and sophistication of syntax (MLU-w)], and we also examined micro-level teacher-child talk strategies and use of target words. Compared to prior research, these classrooms had similar global quality and syntactic complexity, although less lexical diversity. Exploratory results also revealed three distinct teacher talk patterns—teachers who emphasized (1) comments, (2) questions, and (3) a balance of the two. Question-focused teachers had more adult and child talk during reading, as well as more repetitions of target words, and stronger CLASS Engaged Support for Learning. However, comment-focused teachers used more diverse vocabulary and had stronger CLASS Emotional and Behavioral Support. Results illuminate the nature and quality of CDS in toddler classrooms, particularly in the context of an intervention emphasizing target vocabulary words, and highlight applications for professional development and questions for further research.

Introduction Aboriginal and Torres Strait Islander women experience a higher burden of cervical cancer than non-Indigenous women in Australia. Cervical cancer is preventable partly through human papillomavirus (HPV) vaccination; in Australia, this is delivered through the national school-based immunisation programme. While HPV vaccination uptake is high among Australian adolescents, there remain gaps in uptake and completion among Aboriginal and Torres Strait Islander adolescents. This study aims to gain a comprehensive understanding of the barriers and facilitators to HPV vaccination uptake and completion among Aboriginal and Torres Strait Islander adolescents in Queensland, Australia.Methods and analysis The study will be guided by an Indigenist research approach and an ecological model for health promotion. Yarning, a qualitative Indigenous research method, will be conducted in up to 10 schools. Participants will include Year 7 (12/13 years old) Aboriginal and Torres Strait Islander adolescents; parents/caregivers; and local key informants and immunisation programme partners involved in the delivery of school-based HPV immunisation programme. Participants will be recruited through school representatives and investigator networks using purposive and snowball sampling and samples of convenience. Field notes, HPV vaccination clinic observations and sequential diagramming of the HPV vaccination process will be conducted. Thematic analysis of data will be led by Aboriginal and Torres Strait Islander researchers. Synthesised sequential diagrams of the process of HPV vaccination and qualitative themes summarising key findings will be produced.Ethics and dissemination The Aboriginal Health and Medical Research Council of New South Wales Ethics Committee (1646/20), the Australian National University Human Research Ethics Committee (HREC, 2020/478), the HREC of the Northern Territory Department of Health and Menzies School of Health Research (19-3484) and the Townsville Hospital and Health Service HREC (HREC/QTHS/73789) have approved the study. Dissemination will occur via conferences and peer-reviewed publications. Further dissemination will be determined in partnership with the Aboriginal and Torres Strait Islander Steering Committee, including Youth Representatives and Consultation Network.

This study examined a new method for measuring the care experiences of Aboriginal and Torres Strait Islander people with cancer: the Indigenous People’s Experiences of Cancer Care Survey (IPECCS). The study assessed IPECCS’s: 1) performance; 2) ability to elicit information useful for service improvements; and 3) implementation potential. Three participant groups were recruited from five Australian cancer treatment sites: 1) Aboriginal and Torres Strait Islander people with cancer (+/- support person); 2) interviewers; and 3) health services staff. Trained interviewers administered IPECCS to participants with cancer in audiotaped sessions. Paper forms and transcripts were compared to assess performance, and problems/potential solutions reported by participants with cancer were assessed for actionability. All participant groups completed separate interviews regarding IPECCS. Selected implementation measures were assessed based on interviews and IPECCS administration. Participants (n=31) included 11 Aboriginal people with cancer, 7 support people, 4 interviewers, and 9 health staff. Aboriginal people with cancer spoke at length about their cancer care experiences and identified problems and potential solutions that could be acted upon by health services. Although some parts of the IPECCS form were well-completed, recording was inconsistent and inadequate. Aboriginal people with cancer and interviewers predominantly supported the IPECCS process; while most health staff supported the aims, they questioned its feasibility. Capturing domains of patient experience relevant to Aboriginal and Torres Strait Islander people requires a culturally safe, strengths-based approach. The tension between facilitating meaningful patient engagement and maximizing the efficiency of data collection and use must be resolved to realise the benefits of such an approach. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.

While cancer survivors commonly experience fear and anxiety, a substantial minority experience an enduring and debilitating fear that their cancer will return; a condition commonly referred to as fear of cancer recurrence (FCR). Despite recent advances in this area, little is known about FCR among people from Indigenous or other ethnic and racial minority populations. Given the high prevalence and poor outcomes of cancer among people from these populations, a robust understanding of FCR among people from these groups is critical. The current review identified and aggregated existing literature on FCR amongst adult cancer survivors from Indigenous and minority populations. The protocol of this review was registered with PROSPERO in July 2020 (Registration number: CRD42020161655). A systematic search of bibliographic databases was conducted for relevant articles published from 1997 to November 2019. Data from eligible articles were extracted and appraised for quality by two independent reviewers. Nineteen articles from four countries (United States of America, Canada, Australia and the United Kingdom) met the inclusion criteria, including 14 quantitative, 4 qualitative and 1 mixed-methods study. Only one article reported on an Indigenous population. Few studies reported on FCR prevalence (n = 3) or severity (n = 9). While the variation in tools used to measure FCR hindered a robust estimate of severity, results suggested some differences in FCR severity between minority and dominant populations, although these may have been due to study metholodological differences. Few factors were reported as being associated with FCR in minorities across multiple studies. The qualitative synthesis found five themes associated with the lived experience of FCR: (i) variations in the lived experience of FCR; (ii) spirituality and worldview impacting on FCR; (iii) the importance of staying positive; (iv) complexities around support; and (v) increasing cancer knowledge. The findings of this review highlight differences in FCR across cultures and contexts, which reinforces the need for culturally-specific approaches to this condition. The dearth of research in this area is of concern given the significant burden of cancer in these populations. A deeper understanding of this condition among Indigenous and minority populations is critical to developing and delivering appropriate and effective psychosocial care for cancer survivors from these groups. Systematic Review Registration: identifier [CRD42020161655].

Abstract Background There is a disparity in the burden of gynaecological cancer for Indigenous women compared with non-Indigenous women in Australia. Understanding how Indigenous women currently experience gynaecological cancer care services and factors that impact on their engagement with care is critical. This study explored Indigenous Australian women’s experience of gynaecological cancer care at a major metropolitan hospital in Queensland. Methods Indigenous women receiving care at a major metropolitan Queensland hospital for investigation or diagnosis of gynaecological cancer were invited to participate in a larger longitudinal study exploring women’s experiences of gynaecological cancer care. This component was an in-depth, qualitative interview exploring the women’s experiences of hospital care at approximately three-month post initial referral. A peer-approach was used to interview women. Hospital-based care providers involved in the care of Indigenous gynaecological cancer patients were invited to be interviewed. Interviews were transcribed and thematically analysed using an interpretative phenomenological approach enabling a multi-layered, contextualised understanding of the patients' experience and their interaction with tertiary cancer services. Results Eight Indigenous patients and 18 care providers were interviewed. Analysis of all interviews revealed four broad issues affecting Indigenous patients’ early experiences of care: (1) navigating the system, impacted by timely diagnosis, access to support services and follow up; (2) communication and decision-making, patients’ decision-making, efficacy of doctor-patient communication, and patients’ knowledge about cancer; (3) coping with treatment demands, was impacted by emotional stress, access to services and support by hospital staff; and (4) feeling welcome and safe in the hospital, impacted by patients’ relationship with care providers and their access to culturally-safe services. The combination of factors impacting these women’s’ experience of gynaecological care commonly left these women at breaking point, often with limited access to information, resources or support. Conclusions Our findings revealed that experiences of cancer care for Indigenous women are overlain by challenges associated with late referral, misdiagnosis, miscommunication, lack of information, logistics in accessing treatment and services and system cultural insensitivities. Our findings offer insights that can inform cancer care provision to more effectively support Indigenous women accessing gynaecological cancer services.

Abstract Background Disparities in cancer outcomes amongst Indigenous Australians reflect a pattern of reduced access to and engagement with health services. A growing emphasis on patient-centred care has increased efforts to measure patient experiences, but it is unclear whether existing approaches: a) assess the most critical aspects of care that shape the experiences of Indigenous people with cancer; and b) facilitate the engagement and participation of Indigenous people with the measurement of care experiences. Methods Two rounds of semi-structured interviews and focus groups were used to elicit stakeholders’ views on priorities for measuring the cancer care experiences of Indigenous cancer patients and on the acceptability of various methods for capturing such information. Participants included Indigenous people affected by cancer (n = 17), health professionals (n = 28) and individuals in both groups (n = 7). Recruitment occurred through a national web-based network and through four cancer services in urban and regional areas in three jurisdictions across Australia. Results Several aspects of cancer care were identified as critical in shaping Indigenous patients’ experiences. Key themes included: feeling safe in the system; importance of Indigenous staff; barriers to care; the role of family and friends; effective communication and education; and coordination of care and transition between services. Those participants affected by carers’ wellbeing and palliative care strongly advocated for the importance of these topics. Participants expressed support for a face-to-face interview with a trusted person as the most appropriate means of collecting cancer care experience information. Conclusions While existing experience measurement tools would partially capture some important aspects of care, other critical areas would likely be missed. Appropriate tools and approaches, developed by and with Indigenous people, are urgently needed to determine the extent to which health services are meeting the needs of Indigenous people with cancer, and to identify areas for action to improve these services.

Aboriginal and Torres Strait Islander (collectively, Indigenous Australian) women experience a higher burden of cervical cancer than other women. The National Cervical Screening Program (NCSP) is failing to meet the needs of Indigenous Australian women, resulting in many women not regularly participating in cervical screening. However, one third of Indigenous Australian women do participate in cervical screening. The reasons that some women in this population commence and continue to screen remain unheard but could provide insights to support women who currently do not participate. We aimed to describe Indigenous Australian women's experiences and views of participation in cervical screening by yarning (a culturally-appropriate interview technique) with 50 Indigenous Australian women aged 25-70 years who had completed cervical screening in the past five years, recruited via Primary Health Care Centres (PHCCs) from three jurisdictions. Aboriginal or Torres Strait Islander women researchers conducted the interviews. Thematic analysis identified six themes: screening as a means of staying strong and in control; overcoming fears, shame, and negative experiences of screening; needing to talk openly about screening; the value of trusting relationships with screening providers; logistical barriers; and overcoming privacy concerns for women employed at PHCCs. Despite describing screening as shameful, invasive, and uncomfortable, women perceived it as a way of staying healthy and exerting control over their health. This ultimately supported their participation and a sense of empowerment. Women valued open discussion about screening and strong relationships with health providers. We identified logistical barriers and specific barriers faced by women employed at PHCCs. This study is strengthened by a research approach that centred Indigenous Australian women's voices. Understanding the experiences of Indigenous Australian women who participate in screening will help screening providers support women to start and continue to screen regularly. Recommendations for practice are provided.

Abstract Background Indigenous Australians suffer a disproportionate burden of end stage kidney disease (ESKD) but are significantly less likely to receive a transplant. This study explores Indigenous ESKD patients’ views on transplantation as a treatment option. Methods The Improving Access to Kidney Transplants (IMPAKT) research program investigated barriers to kidney transplantation for Indigenous Australians. An interview study, conducted in 2005–2006, elicited illness experience narratives from 146 Indigenous patients, including views on transplant. Interviews were conducted at 26 sites that collectively treat the majority of Indigenous ESKD patients. Key themes were identified via team consensus meetings, providing a flexible framework and focus for continued coding. Results Four inter-related themes were identified in patient commentary: a very high level (90% of respondents) of positive interest in transplantation; patients experienced a range of communication difficulties and felt uninformed about transplant; family involvement in decision-making was constrained by inadequate information; and patients needed to negotiate cultural and social sensitivities around transplantation. Conclusions Indigenous ESKD patients demonstrated an intense interest in transplantation preferring deceased over living kidney donation. Patients believe transplant is the path most likely to support the re-establishment of their ‘normal’ family life. Patients described themselves as poorly informed; most had only a rudimentary knowledge of the notion of transplant but no understanding of eligibility criteria, the transplant procedure and associated risks. Patients experienced multiple communication barriers that - taken together - undermine their engagement in treatment decision-making. Families and communities are disempowered because they also lack information to reach a shared understanding of transplantation. Cultural sensitivities associated with transplantation were described but these did not appear to constrain patients in making choices about their own health. Transplant units and local treatment providers should collaborate to develop user-friendly, culturally informed and region-specific patient education programs. Quality improvement cycles should underpin the development of national guidelines for patient education. Noting Indigenous patients’ intense interest in transplantation, and nephrologists’ concerns regarding poor transplant outcomes, research should prioritise exploring the predictors of transplant outcomes for Indigenous Australians.

Background: Cancer ‘patients’ are increasingly using traditional indigenous and complementary medicines (T&CM) alongside conventional medical treatments to both cure and cope with their cancer diagnoses. To date T&CM use among Indigenous cancer patients from Australia, Canada, New Zealand, and the United States has not been systematically reviewed. Methods: We systematically searched bibliographic databases to identify original research published between January 2000 and October 2017 regarding T&CM use by Indigenous cancer patients in Australia, Canada, New Zealand, and the United States. Data from records meeting eligibility criteria were extracted and appraised for quality by 2 independent reviewers. Results: Twenty-one journal articles from 18 studies across all 4 countries met our inclusion criteria. T&CM use ranged from 19% to 57.7% (differing across countries). T&CM was mostly used concurrently with conventional cancer treatments to meet their spiritual, emotional, social, and cultural needs; however, bush, traditional, and herbal medicines were used in a minority of cases as an alternative. Conclusions: Our findings highlight the importance of T&CM use to Indigenous cancer patients across these 4 countries; we identified multiple perceived spiritual, emotional and cultural benefits to its use. The patient’s perception of their health professional’s attitudes toward T&CM in some cases hindered or encouraged the patient’s disclosure. Additional research is required to further explore the use and disclosure of T&CM among Indigenous cancer patients to help inform and ensure effective, safe, coordinated care for Indigenous cancer patients that relies on shared open decision making and communication across patients, communities, and providers.

Objectives: The cancer burden is high among Australia’s Indigenous population. Following a period of increasing attention by researchers, policy makers and consumers, this study aimed to identify emerging research priorities in Indigenous cancer control. Methods: A survey was administered to a network of individuals with an interest in cancer and Indigenous Australians. Respondents (N = 255) described what they thought was the most significant research priority for cancer control for Indigenous Australians and ranked prespecified research areas relating to components of the cancer continuum. Results: Identified research priorities included cancer prevention and early detection; health literacy; and culturally appropriate care for Indigenous patients, survivors and families. Community engagement, Indigenous ownership, and partnership and collaboration were highlighted as critical elements underpinning research. Conclusions: The identified research priorities, along with seminal documents such as the National Aboriginal and Torres Strait Islander Cancer Framework, provide a roadmap for developing, funding, implementing and translating research to reduce the burden of cancer for Indigenous Australians.

Approximately 1.3% of all people, or about 4 million Americans, cannot rely on their natural speech to meet their daily communication needs. Telepractice offers a potentially cost-effective service delivery mechanism to provide clinical AAC services at a distance to the benefit of underserved populations in the United States and worldwide. Tele-AAC is a unique cross-disciplinary clinical service delivery model that requires expertise in both telepractice and augmentative and alternative communication (AAC) systems. The Tele-AAC Working Group of the 2012 ISAAC Research Symposium therefore drafted a resolution underscoring the importance of identifying and characterizing the unique opportunities and constraints of Tele-AAC in all aspects of service delivery. These include, but are not limited to: needs assessments; implementation planning; device/system procurement, set-up and training; quality assurance, client progress monitoring, and follow-up service delivery. Tele-AAC, like other telepractice applications, requires adherence to the ASHA Code of Ethics and other policy documents, and state, federal, and international laws, as well as a competent technological infrastructure. The Working Group recommends that institutions of higher education and professional organizations provide training in Tele-AAC service provision. In addition, research and development are needed to create validity measures across Tele-AAC practices (i.e., assessment, implementation, and consultation); determine the communication competence levels achieved by Tele-AAC users; discern stakeholders’ perceptions of Tele-AAC services (e.g., acceptability and viability); maximize Tele-AAC’s capacity to engage multiple team members in AAC assessment and ongoing service; identify the limitations and barriers of Tele-AAC provision; and develop potential solutions.

This is not a legal brief. This is an article written by a special education expert who has witnessed the very best and the very worst education has to offer. This article is meant to serve as a springboard for examining what is meant by education for all, high expectations, schools as laboratories for innovation, high caliber academic and social emotional learning, and comprehensive data systems used to gauge growth. This article advocates for the use of a higher standard because children with disabilities are general education students first and they deserve the very best education has to offer. I encourage readers to refer to legal articles and state and local education agency definitions of the standard used to determine a Free Appropriate Public Education or a FAPE under the Individuals With Disabilities Act [IDEA].