'The burden is very much on yourself': A qualitative study to understand the illness and treatment burden of hearing loss across the life course.

INTRODUCTION: Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment-related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens. METHODS: A qualitative design was used with semi-structured interviews (online or in-person) with participants recruited through audiology services and nonclinical services, such as lip-reading classes. Forty-six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data. RESULTS: The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology). CONCLUSIONS: The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld-led care, family-centred care and peer support to build support for those with hearing loss. PATIENT OR PUBLIC CONTRIBUTION: We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co-authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript.

The lived experience of hearing loss - an individualised responsibility.

OBJECTIVE: This study aimed to provide a conceptual model to understand what typifies the lived experience of hearing loss. DESIGN: A grounded theory informed study of adults with hearing loss (n = 46) who participated in individual interviews. The data were analysed in line with the constant comparative approach of grounded theory. A substantial patient and public engagement (PPIE) strategy underpinned decisions and processes throughout. STUDY SAMPLE: Adults were recruited from age bands (16-29; 30-49;50-79 and 80 upwards) to provide different lived experience. We recruited individuals from across the UK including urban, sub-urban and rural communities and included a typical constituency of each location including black and minority ethnic participants. Our PPIE groups included adults often marginalised in research including South Asian community groups, adults in residential care and those with additional disabilities. RESULTS: We identified the consistent features of the lived experience with hearing loss, as the individualised responsibility that hearing loss confers. These are an individual auditory lifeworld; social comparison and social support; individual and patient-centred care and individual agency and capability. CONCLUSIONS: This work provides new insights for those practising audiology and highlights the importance of building social support systems through implementation of family and peer support approaches.

Fasciola hepatica Cathepsin L Zymogens: Immuno-Proteomic Evidence for Highly Immunogenic Zymogen-Specific Conformational Epitopes to Support Diagnostics Development.

Fasciola hepatica, the common liver fluke and causative agent of zoonotic fasciolosis, impacts on food security with global economic losses of over $3.2 BN per annum through deterioration of animal health, productivity losses, and livestock death and is also re-emerging as a foodborne human disease. Cathepsin proteases present a major vaccine and diagnostic target of the F. hepatica excretory/secretory (ES) proteome, but utilization in diagnostics of the highly antigenic zymogen stage of these proteins is surprisingly yet to be fully exploited. Following an immuno-proteomic investigation of recombinant and native procathepsins ((r)FhpCL1), including mass spectrometric analyses (DOI: 10.6019/PXD030293), and using counterpart polyclonal antibodies to a recombinant mutant procathepsin L (anti-rFhΔpCL1), we have confirmed recombinant and native cathepsin L zymogens contain conserved, highly antigenic epitopes that are conformationally dependent. Furthermore, using diagnostic platforms, including pilot serum and fecal antigen capture enzyme-linked immunosorbent assay (ELISA) tests, the diagnostic capacities of cathepsin L zymogens were assessed and validated, offering promising efficacy as markers of infection and for monitoring treatment efficacy.

Influence of lived experience on risk perception among women who received a breast cancer polygenic risk score: 'Another piece of the pie'.

Polygenic risk scores (PRS) are personalized assessments of disease risk based on the cumulative effect of common low-risk genetic variants. PRS have been shown to accurately predict women's breast cancer risk and are likely to be incorporated into personalized breast cancer risk management programs. However, there are few studies investigating the individual impact of receiving a breast cancer PRS. Existing studies have not demonstrated significant changes in perceived risk or risk management behaviors after receipt of polygenic risk information. The aim of this qualitative study was to explore how women with a family history of breast cancer construct breast cancer risk perceptions after receipt of a breast cancer PRS. Unaffected women with a family history of breast cancer who had not previously received genetic counseling regarding their breast cancer risk were invited to participate in this study. In-depth, semi-structured interviews were conducted with 20 women who attended a familial cancer clinic in the Australian states of Victoria and Tasmania. Data were analyzed using an inductive thematic approach. Women's lived experience played a significant role in the construction and maintenance of their breast cancer risk perception. Women's pre-existing risk perceptions were informed by their family history and their knowledge that breast cancer is a multifactorial disease. Knowing that breast cancer is a multifactorial disease enabled most women to integrate genetic information with their pre-existing notions of risk. Women reported that the information they received was consistent with their existing notions of personal risk and screening advice. Therefore, the PRS did not lead to a change in perceived risk or risk management behaviors for most women. The results of this study provide insight into how polygenic risk information is integrated with pre-existing notions of risk, which will inform its implementation into clinical practice.

Supporting and preparing patients for radiotherapy: Patients' and radiation therapists' perspectives on their one-to-one consultations.

OBJECTIVE: Patients are often anxious and lack knowledge of radiotherapy prior to commencing treatment. Evidence-based interventions are required to reduce patient anxiety and increase patient preparation before treatment. This study is part of a larger project examining the effectiveness of an innovative preparatory intervention "RT Prepare," to reduce patient psychological distress prior to treatment for breast cancer. This study aimed to explore patients' and RTs' perceptions about the "RT Prepare" intervention and was conducted to assist with refinement of the intervention for future implementation. METHODS: Semi-structured interviews were conducted with patients and radiation therapists (RTs) to elicit their perspectives on the "RT Prepare" intervention. Thematic analysis was used to analyse the data. RESULTS: Telephone interviews were conducted with 21 patients who had received the intervention and 15 RTs who had delivered the intervention. Patients and RTs described the intervention positively and highlighted that it was beneficial for preparing patients for treatment planning and treatment. The overarching themes were communication skills; preparation; information provision and dedicated space and time. CONCLUSION: RT Prepare was well received by patients and RTs. Practice implications Based on the results of this study and our quantitative findings, implementation of the intervention would be beneficial for both patients and RTs.

What do radiation therapists know about health literacy and the strategies to improve it for patients? A qualitative study.

PURPOSE: Low health literacy leads to poor knowledge and understanding of health information, delayed diagnosis, lower use of preventative medicines/health services, increased likelihood of hospitalisation, and increased patient anxiety. Effective communication facilitates patient understanding and helps patients to manage the adverse side-effects associated with treatment. It is not yet known whether radiation therapists in Ireland tailor their communication to match a patient's health literacy level. The purpose of this research was to investigate radiation therapists' knowledge and awareness of health literacy and perceptions of their role in supporting patients with low health literacy. METHODS: Semi-structured interviews were conducted with sixteen radiation therapists working in four radiotherapy departments in Ireland. Data were analysed using the framework approach. RESULTS: Through discussions with participants, it was apparent that radiation therapists had limited knowledge of the concept of health literacy. Common themes arose from the interviews with four key themes identified: 1. Strategies used to identify patients' health literacy 2. Perceived effect of low health literacy 3. Obstacles faced when addressing low health literacy 4. Recommendations to support lower health literacy groups CONCLUSION: Currently, radiation therapists show some knowledge and awareness of health literacy, but an increased awareness of the prevalence of low health literacy and a structured approach to supporting patients would allow radiation therapists to more effectively communicate with patients, thus improving their treatment experience and reducing the risk of adverse outcomes.

A low literacy targeted talking book about radiation therapy for cancer: development and acceptability.

PURPOSE: To develop a low literacy talking book (written book with accompanying audio-recording) about radiation therapy and explore its acceptability with patients and caregivers. METHOD: The talking book was developed iteratively using low literacy design principles and a multidisciplinary committee comprising consumers and experts in radiation oncology, nursing, behavioural sciences, and linguistics. It contained illustrations, photos, and information on: treatment planning, daily treatment, side effects, psychosocial health, and a glossary of medical terms. Semi-structured interviews were conducted with patients who self-reported low functional health literacy and caregivers to explore their views on the resource. Thematic analysis using a framework approach informed the analysis. RESULTS: Participants were very satisfied with the content, illustrations, and language in the resource. Most were unfamiliar with the term 'talking book', but liked the option of different media (text and audio). The resource was seen as facilitating communication with the cancer care team by prompting question-asking and equipping patients and their families with knowledge to communicate confidently. CONCLUSIONS: The low literacy talking book was well accepted by patients and their caregivers. The next step is to examine the effect of the resource on patients' knowledge, anxiety, concerns, and communication with the cancer care team.

What information is communicated by radiation therapists to patients during education sessions on the first day of treatment?

This study examined the content covered by radiation therapists (RTs) during education sessions; the frequency and types of questions asked by patients; and the relationship between patient characteristics and the number of questions asked. Fifty-eight education sessions were audio-recorded and transcribed verbatim. A coding scheme was developed to examine the frequency of topics covered. It comprised 16 topics under four themes: (a) treatment schedule, (b) procedural information, (c) treatment-related side effects and (d) who will be involved in treatment provision. All education sessions covered information about the treatment plan (n = 58, 100%), and the majority described procedural information about what happens in the treatment room (n = 56, 97%). Least information was given about who will be providing treatment. On average, patients asked a mean of 6 questions (SD = 4.95; range = 0-28). Most frequently asked questions concerned the general treatment (logistics, schedule), accounting for 67% of all questions asked. The least common types of questions were related to the impact of treatment (6%). There were no statistically significant differences in the total number of questions and patient demographics. Patients are provided with most, but not all, of the recommended information. Tailoring of information by RTs was enabled in response to questions asked.

Improving women's knowledge about prenatal screening in the era of non-invasive prenatal testing for Down syndrome - development and acceptability of a low literacy decision aid.

BACKGROUND: Access to information about prenatal screening is important particularly in light of new techniques such as non-invasive prenatal testing (NIPT). This study aimed to develop and examine the acceptability of a low literacy decision aid (DA) about Down syndrome screening among pregnant women with varying education levels and GPs. METHODS: We developed a DA booklet providing information about first-trimester combined testing, maternal serum screening, and NIPT. GPs and women participated in a telephone interview to examine the acceptability of the DA and measure screening knowledge before and after reading the DA. The knowledge measure was designed to assess whether women had understood the gist of the information presented in the decision aid. It comprised conceptual questions (e.g. screening tells you the chance of having a baby with Down syndrome) and numeric questions (e.g. the accuracy of different screening tests). RESULTS: Twenty-nine women and 18 GPs participated. Regardless of education level, most women found the booklet 'very' clearly presented (n = 22, 76%), and 'very' informative (n = 23, 80%). Overall, women's conceptual and numeric knowledge improved after exposure to the DA, from 4% having adequate knowledge to 69%. Women's knowledge of NIPT also improved after receiving the decision aid, irrespective of education. Most GPs found it 'very' clearly presented (n = 13, 72%), and that it would 'very much' facilitate decision-making (n = 16, 89%). CONCLUSIONS: The DA was found to be acceptable to women as well as GPs. A comprehensive evaluation of the efficacy of the decision aid compared to standard information is an important next step. Strategies are needed on how to implement the tool in practice.

Development and Pilot Testing of a Decision Aid for Genomic Research Participants Notified of Clinically Actionable Research Findings for Cancer Risk.

Germline genomic testing is increasingly used in research to identify genetic causes of disease, including cancer. However, there is evidence that individuals who are notified of clinically actionable research findings have difficulty making informed decisions regarding uptake of genetic counseling for these findings. This study aimed to produce and pilot test a decision aid to assist participants in genomic research studies who are notified of clinically actionable research findings to make informed choices regarding uptake of genetic counseling. Development was guided by published literature, the International Patient Decision Aid Standards, and the expertise of a steering committee of clinicians, researchers, and consumers. Decision aid acceptability was assessed by self-report questionnaire. All 19 participants stated that the decision aid was easy to read, clearly presented, increased their understanding of the implications of taking up research findings, and would be helpful in decision-making. While low to moderate levels of distress/worry were reported after reading the booklet, a majority of participants also reported feeling reassured. All participants would recommend the booklet to others considering uptake of clinically actionable research findings. Results indicate the decision aid is acceptable to the target audience, with potential as a useful decision support tool for genomic research participants.

Preconception counselling for low health literate women: an exploration of determinants in the Netherlands.

BACKGROUND: Women from lower socioeconomic groups tend to be at greater risk of adverse perinatal outcomes, but are less likely to participate in preconception counselling compared to higher socioeconomic groups. This could be partly because of their limited skills to assess, understand and use health related information in ways that promote and maintain good health (health literacy skills). In this study we explored determinants of participation in preconception counselling among women with low health literacy in The Netherlands. METHODS: Potential determinants of participation in preconception counselling were derived from the literature, and mapped onto a theoretical framework, which was tested for perceived relevance and completeness in an expert review (n = 20). The framework was used to prepare face-to-face interviews with women with low health literacy and a wish to conceive (n = 139). In the interviews we explored preconception counselling awareness, knowledge, considerations, subjective norms, self-efficacy, attitude, and intention. Linear regression analyses were used to test associations with intention to participate in preconception counselling. RESULTS: Most women (75%) were unaware of the concept of preconception counselling and the provision of counselling, even if they lived in areas where written invitations had been disseminated. Common considerations for participation were: preparation for pregnancy; perceived lack of information; and problems in a previous pregnancy. Considerations not to participate were mostly related to perceived sufficient knowledge and perceived low risk of perinatal problems. Respondents generally had a positive attitude towards participation in preconception counselling for themselves, and 41% reported that they would participate in preconception counselling. CONCLUSION: Women with low health literacy were generally unaware of the concept and provision of preconception counselling, but seemed to be interested in participation. Further research should investigate how to effectively reach and inform this group about preconception counselling. This knowledge is essential for evidence-based development of interventions to increase the accessibility and understanding of preconception counselling.

Improving health literacy through adult basic education in Australia.

Adults with low literacy are less empowered to take care of their health, have poorer health outcomes and higher healthcare costs. We facilitated partnerships between adult literacy teachers and community health providers to deliver a health literacy training program in adult basic education classrooms. Following course completion we interviewed 19 adult education teachers (15 delivering the health literacy program; 4 delivering standard literacy classes) and four community health providers (CHPs) about their experiences, and analysed transcripts using Framework analysis. Written feedback from eight teachers on specific course content was added to the Framework. Health literacy teachers reported a noticeable improvement in their student's health behaviours, confidence, vocabulary to communicate about health, understanding of the health system and language, literacy and numeracy skills. CHP participation was perceived by teachers and CHPs as very successful, with teachers and CHPs reporting they complemented each other's skills. The logistics of coordinating CHPs within the constraints of the adult education setting was a significant obstacle to CHP participation. This study adds to existing evidence that health is an engaging topic for adult learners, and health literacy can be successfully implemented in an adult basic learning curriculum to empower learners to better manage their health. Health workers can deliver targeted health messages in this environment, and introduce local health services. Investment in adult literacy programs teaching health content has potential both to meet the goals of adult language and literacy programs and deliver health benefit in vulnerable populations.

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

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

Health literacy and the social determinants of health: a qualitative model from adult learners.

Summary: Health literacy, 'the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health', is key to improving peoples' control over modifiable social determinants of health (SDH). This study listened to adult learners to understand their perspectives on gathering, understanding and using information for health. This qualitative project recruited participants from community skills courses to identify relevant 'health information' factors. Subsequently different learners put these together to develop a model of their 'Journey to health'. Twenty-seven participants were recruited; twenty from community health literacy courses and seven from an adult basic literacy and numeracy course. Participants described health as a 'journey' starting from an individual's family, ethnicity and culture. Basic (functional) health literacy skills were needed to gather and understand information. More complex interactive health literacy skills were needed to evaluate the importance and relevance of information in context, and make health decisions. Critical health literacy skills could be used to adapt negative external factors that might inhibit health-promotion. Our model is an iterative linear one moving from ethnicity, community and culture, through lifestyle, to health, with learning revisited in the context of different sources of support. It builds on existing models by highlighting the importance of SDH in the translation of new health knowledge into healthy behaviours, and the importance of health literacy in enabling people to overcome barriers to health.

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

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

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

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

Socioeconomic Differences in Informed Decisions About Down Syndrome Screening: A Systematic Review and Research Agenda.

Supporting pregnant women to make informed choices about Down syndrome screening is widely endorsed. We reviewed the literature on: (a) the association between socioeconomic position and informed choices and decision-making about Down syndrome screening, and (b) the possible mediating variables (e.g., health literacy, numeracy skills, behavioral and communication variables) that might explain the relationship. EMBASE, MEDLINE, PubMed, CINAHL, and PsycINFO were searched from January 1999 to September 2014. The methodological quality of studies was determined by predefined criteria regarding the research aims, study design, study population and setting, measurement tools, and statistical analysis. A total of 33 studies met the inclusion criteria. Women from lower socioeconomic groups experience greater difficulties making informed choices about Down syndrome screening compared to women from higher socioeconomic groups. Most studies focus on individual dimensions of informed decision-making rather than assessing elements in conjunction with one another. Few studies have explored why there are socioeconomic differences in women's ability to make informed screening decisions. Future work is needed to identify mediating variables in this pathway. Systematic evidence-based intervention development to improve communication, understanding, and decision-making about Down syndrome screening is needed to ensure that women have an equal opportunity to make an informed choice about screening regardless of their socioeconomic position.

Instrumental support to facilitate hepatitis C treatment adherence: working around shortfalls in shared-care.

Adherence to treatment for hepatitis C virus (HCV) infection is associated with the successful eradication of infection. However, patients often have difficulty adhering to HCV treatment because of factors such as the psychiatric side effects of regimens and social disadvantage. Commonly, health professionals including specialist physicians, nurses, social workers and psychologists work together under a multidisciplinary model of shared-care to support patients' adherence to HCV treatment. In some HCV treatment clinics, shared-care is not always available, or only partially implemented and this has implications for patient adherence. To explore the facilitators of adherence, an interview-based study was conducted in 2012 with a purposive sample of Australian physicians and nurses (N = 20). The findings reveal that when comprehensive shared-care was limited or unavailable, physicians and nurses filled in the gaps by assuming roles outside of their expertise to help patients adhere to HCV treatment. Physicians and nurses applied instrumental support strategies based on psychosocial interventions, namely patient advocacy, pragmatic problem-solving, treatment engagement and emotional support. These strategies were provided by dedicated physicians and nurses to address shortfalls in multidisciplinary shared-care. Although these interventions were reported to assist adherence, there is an increased risk of complications when physicians and nurses move beyond the bounds of their disciplinary training, for example, to assess and manage patients' psychiatric side effects or advocate on their behalf for social services. Future research should measure the effectiveness of instrumental support strategies on HCV treatment adherence, and explore the costs associated with physicians and nurses providing instrumental support in the absence of comprehensive multidisciplinary shared-care.

Informed choice in bowel cancer screening: a qualitative study to explore how adults with lower education use decision aids.

BACKGROUND: Offering informed choice in screening is increasingly advocated, but little is known about how evidence-based information about the benefits and harms of screening influences understanding and participation in screening. OBJECTIVE: We aimed to explore how a bowel cancer screening decision aid influenced decision making and screening behaviour among adults with lower education and literacy. METHODS: Twenty-one men and women aged 55-64 years with lower education levels were interviewed about using a decision aid to make their screening decision. Participants were purposively selected to include those who had and had not made an informed choice. RESULTS: Understanding the purpose of the decision aid was an important factor in whether participants made an informed choice about screening. Participants varied in how they understood and integrated quantitative risk information about the benefits and harms of screening into their decision making; some read it carefully and used it to justify their screening decision, whereas others dismissed it because they were sceptical of it or lacked confidence in their own numeracy ability. Participants' prior knowledge and beliefs about screening influenced how they made sense of the information. DISCUSSION AND CONCLUSIONS: Participants valued information that offered them a choice in a non-directive way, but were concerned that it would deter people from screening. Healthcare providers need to be aware that people respond to screening information in diverse ways involving a range of literacy skills and cognitive processes.

Supporting patients with low health literacy: what role do radiation therapists play?

PURPOSE: Health literacy plays a key role in a patient's ability to use health information and services, and can affect health outcomes. This study aimed to explore radiation therapists' perspectives on how they support people with lower health literacy who are undergoing radiotherapy. METHODS: Semi-structured interviews were conducted with 25 radiation therapists working in radiation oncology departments in New South Wales, Australia. RESULTS: The four key themes were (1) the process of identifying a patient with low health literacy, (2) the perceived consequences of low health literacy, (3) managing and responding to the needs of different health literacy groups and (4) recommendations to address low health literacy in radiotherapy. Radiation therapists appeared to make an informal, intuitive judgment about a patient's health literacy, using a variety of verbal and non-verbal cues as well as impromptu conversations with the multi-disciplinary team. Patients perceived to have lower health literacy were described as having greater difficulties assimilating knowledge and engaging in self-care. Although participants reported communicating to patients at a basic level initially, they subsequently tailored their communication to match a patient's health literacy. Strategies reported to communicate to low health literacy groups ranged from using lay language with minimal medical terminology, using visual aids (photos), using analogies, reiterating information and asking family members with higher literacy to attend consultations. CONCLUSION: A more structured approach to supporting patients with low health literacy and integrating health literacy training in radiation oncology departments may help to minimise the adverse outcomes typically experienced by this population.