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Context: Patient-reported experience measures (PREMs) provide important insights into the challenges experienced when living with a chronic condition. Although patient-reported outcome measures (PROMs) exist in audiology, there are no validated PREMs to help clinicians understand patient perspectives and identify areas where patients may need additional support or interventions., Objective: The aim of this study was to develop and evaluate content for the new 'My Hearing PREM', which captures lived experiences of hearing loss from patients' perspectives., Design: My Hearing PREM was developed and tested in two key phases. Phase 1 involved generating the PREM prototype in accordance with our conceptual model of the lived experience of hearing loss. In Phase 2, cognitive interviews were conducted with adults with hearing loss to appraise the content of the PREM (relevance, clarity, acceptability and comprehensiveness) and assess its respondent burden. Key stakeholders (e.g., adults with hearing loss, patient and public representatives, clinicians and researchers) were consulted throughout Phases 1 and 2 to review and refine the PREM. Interview data were analysed using thematic analysis., Setting and Participants: Sixteen participants (aged 16 years and over) with hearing loss took part in cognitive interviews, recruited from UK audiology departments and non-clinical settings (e.g., lip-reading classes, national charity links and social media)., Results: Most PREM items were found to be relevant, clear, acceptable and comprehensive. Several problems were identified, including items not working well with the response scale options, irrelevant questions and a lack of clarity about terms (e.g., healthcare professionals) and whether questions should be answered based on the use of hearing aids (or not). The PREM was amended accordingly., Conclusions: Currently, no hearing loss-specific PREMs exist in audiology. Involving multiple stakeholders in the development of the PREM helped to ensure that the items were relevant, clear, acceptable and comprehensive. The PREM is undergoing further evaluation and refinement in preparation for investigating the feasibility of implementing it into clinical practice., Patient or Public Contribution: Ongoing Patient and Public Involvement and Engagement (PPIE) with key groups (South Asian Women's groups, young people's groups, learning disability networks and student populations) was integral to the study. PPIE members reviewed patient information sheets and consent forms, advised on recruitment, reviewed the interview schedule and checked coding and analysis procedures. PPIE members provided feedback on the PREM's comprehensibility. Members of the public, including adults attending lip-reading classes and hearing aid users from the South Asian community, provided feedback on iterative PREM drafts., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

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., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Carriers of germline mutations in genes associated with Lynch syndrome are at increased risk for colorectal, endometrial, ovarian, and other cancers. There is evidence that daily consumption of aspirin may reduce cancer risk in these individuals. There is a need for educational resources to inform carriers of the risk-reducing effects of aspirin or to support decision-making. An educational leaflet describing the risks and benefits of using aspirin as risk-reducing medicine in carriers of Lynch-syndrome-related mutations is developed and pilot tested in 2017. Carriers are ascertained through a familial cancer clinic and surveyed using a mailed, self-administered questionnaire. The leaflet is highly rated for its content, clarity, length, relevance, and visual appeal by more than 70% of the participants. Most participants (91%) report "a lot" or "quite a bit" of improvement in perceived understanding in knowledge about who might benefit from taking aspirin, its benefits, how long to take it, the reduction in bowel cancer risk, and the optimal dosage. A few (14%) participants seek more information on the dosage of aspirin. This leaflet will be useful as an aid to facilitate discussion between patients and their health care professionals about the use of aspirin as a risk-reducing medication., Competing Interests: The authors declare no conflict of interest., (© 2022 The Authors. Advanced Genetics published by Wiley Periodicals LLC.)

Background: The effectiveness of patient decision aids (PtDAs) and other shared decision-making (SDM) interventions for socially disadvantaged populations has not been well studied., Purpose: To assess whether PtDAs and other SDM interventions improve outcomes or decrease health inequalities among socially disadvantaged populations and determine the critical features of successful interventions., Data Sources: MEDLINE, CINAHL, Cochrane, PsycINFO, and Web of Science from inception to October 2019. Cochrane systematic reviews on PtDAs., Study Selection: Randomized controlled trials of PtDAs and SDM interventions that included socially disadvantaged populations., Data Extraction: Independent double data extraction using a standardized form and the Template for Intervention Description and Replication checklist., Data Synthesis: Twenty-five PtDA and 13 other SDM intervention trials met our inclusion criteria. Compared with usual care, PtDAs improved knowledge (mean difference = 13.91, 95% confidence interval [CI] 9.01, 18.82 [I 2 = 96%]) and patient-clinician communication (relative risk = 1.62, 95% CI 1.42, 1.84 [I 2 = 0%]). PtDAs reduced decisional conflict (mean difference = -9.59; 95% CI -18.94, -0.24 [I 2 = 84%]) and the proportion undecided (relative risk = 0.39; 95% CI 0.28, 0.53 [I 2 = 75%]). PtDAs did not affect anxiety (standardized mean difference = 0.02, 95% CI -0.22, 0.26 [I 2 = 70%]). Only 1 trial looked at clinical outcomes (hemoglobin A1C). Five of the 12 PtDA studies that compared outcomes by disadvantaged standing found that outcomes improved more for socially disadvantaged participants. No evidence indicated which intervention characteristics were most effective. Results were similar for SDM intervention trials., Limitations: Sixteen PtDA studies had an overall unclear risk of bias. Heterogeneity was high for most outcomes. Most studies only had short-term follow-up., Conclusions: PtDAs led to better outcomes among socially disadvantaged populations but did not reduce health inequalities. We could not determine which intervention features were most effective.[Box: see text].

Background: This article evaluates the evidence for the inclusion of patient narratives in patient decision aids (PtDAs). We define patient narratives as stories, testimonials, or anecdotes that provide illustrative examples of the experiences of others that are relevant to the decision at hand., Method: To evaluate the evidence for the effectiveness of narratives in PtDAs, we conducted a narrative scoping review of the literature from January 2013 through June 2019 to identify relevant literature published since the last International Patient Decision Aid Standards (IPDAS) update in 2013. We considered research articles that examined the impact of narratives on relevant outcomes or described relevant theoretical mechanisms., Results: The majority of the empirical work on narratives did not measure concepts that are typically found in the PtDA literature (e.g., decisional conflict). Yet, a few themes emerged from our review that can be applied to the PtDA context, including the impact of narratives on relevant outcomes (knowledge, behavior change, and psychological constructs), as well as several theoretical mechanisms about how and why narratives work that can be applied to the PtDA context., Conclusion: Based on this evidence update, we suggest that there may be situations when narratives could enhance the effectiveness of PtDAs. The recent theoretical work on narratives has underscored the fact that narratives are a multifaceted construct and should no longer be considered a binary option (include narratives or not). However, the bottom line is that the evidence does not support a recommendation for narratives to be a necessary component of PtDAs.

Background: There is increasing recognition of the importance of addressing health literacy in patient decision aid (PtDA) development., Purpose: An updated review as part of IPDAS 2.0 examined the extent to which PtDAs are designed to meet the needs of people with low health literacy/socially-disadvantaged populations., Data Sources: Reference lists of Cochrane reviews of randomized controlled trials (RCTs) of PtDAs (2014, 2017, and upcoming 2021 versions)., Study Selection: RCTs that assessed the impact of PtDAs on low health literacy or other socially-disadvantaged groups (i.e., ≥50% participants from socially-disadvantaged groups and/or subgroup analysis in socially-disadvantaged group/s)., Data Extraction: Two researchers independently extracted data into a standardized form including PtDA development and evaluation details. We searched online repositories and emailed authors to access PtDAs to verify grade reading level, understandability, and actionability., Data Synthesis: Twenty-five of 213 RCTs met the inclusion criteria, illustrating that only 12% of studies addressed the needs of low health literacy or other socially-disadvantaged groups. Grade reading level was calculated in 8 of 25 studies (33%), which is recommended in previous IPDAS guidelines. We accessed and independently assessed 11 PtDAs. None were written at sixth-grade level or below. Ten PtDAs met the recommended threshold for understandability, but only 5 met the recommended threshold for actionability. We also conducted a post hoc subgroup meta-analysis and found that knowledge improvements after receiving a PtDA were greater in studies that reported using strategies to reduce cognitive demand in PtDA development compared with studies that did not (χ 2 = 14.11, P = 0.0002, I 2 = 92.9%)., Limitations: We were unable to access 13 of 24 PtDAs. Conclusions. Greater attention to health literacy and socially-disadvantaged populations is needed in the field of PtDAs to ensure equity in decision support.

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., (© 2021 National Society of Genetic Counselors.)

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., (© 2020 John Wiley & Sons Ltd.)

Objectives and importance of the study: Adult literacy programs aim to empower learners to participate more effectively in everyday life. This includes programs with health content embedded in curricula to target health literacy. Adult learners who attend these programs represent a heterogeneous population, but include a high proportion of hard-to-reach or socially disadvantaged groups in terms of age, ethnicity, educational background, language and prevalence of learning disabilities. In 2014, we conducted a cluster-randomised controlled trial of a health literacy program in adult basic education classes across New South Wales, Australia. This paper reports findings from a qualitative study exploring learners' experience of the course and its perceived impact on their lives, as well as their understanding and confidence about health., Study Type: Qualitative interview study., Method: We conducted semistructured interviews as part of the evaluation of the 18-week health literacy program, with participants purposively recruited from six health literacy classes (n = 22). Researchers trained in qualitative methods interviewed adult learners either face to face or over the phone using a topic guide. Data was analysed using the Framework method, a matrix-based approach to thematic analysis., Results: The majority of interviewees were female, lived in metropolitan areas and were from non-English-speaking backgrounds. Most had existing self-reported health problems and inadequate functional health literacy. Most participants described positive impacts of the health literacy course on their language, literacy and numeracy skills, functional health literacy skills, and health knowledge. They also reported being able to translate this into health actions including interacting with providers, accessing and using healthcare, and managing health and illness (e.g. making healthier food choices). Learners also described positive social outcomes of the course, including feelings of connectedness and interpersonal trust within a new network of learners, and reported sharing new knowledge with others in their communities., Conclusions: The findings add value to existing limited evidence that has demonstrated the untapped potential of adult basic education to develop health literacy skills among socially disadvantaged groups. Learners valued the opportunity to share experiences in structured group learning, and reported confidence to transfer new knowledge into their home and wider social network., Competing Interests: None declared.

Background: Adult education targeting health literacy (HL) may bring added value in the form of improved health., Objective: This study evaluated the effects of a HL program as part of an adult education curriculum for adults with low literacy and numeracy., Methods: This was a partial-cluster randomized controlled trial among 308 adults enrolled in basic education programs in Australia. Of the 308 participants, 141 (46%) were randomized to either the standard program (language, literacy, and numeracy [LLN]), or the HL intervention (LLN with embedded health content); the remainder ( n = 167) were allocated to standard intervention programs by the education provider at the class level. The main outcomes were functional HL, self-reported confidence, patient activation, generic HL (ie, HLQ, health knowledge, and self-reported health behavior). Data were collected at baseline, immediately after, and at 6 months post-intervention., Key Results: Of the 308 participants, 71% had limited literacy and 60% spoke a language other than English at home. Both interventions benefited participants, with improvements from baseline to immediate follow up on individual-level functional HL (e.g., reading a thermometer; HL group 18.4% vs. standard group 7.2%; p = .001), confidence (HL group 0.34 vs. standard group 0.06; p = .014) and health literacy questionnaire (HLQ) subscales. At 6 months, improvements in confidence ( p < .001) and some HLQ measures were retained. A consistent pattern of increased improvement in the HL program was observed compared to the standard program, although only some measures reached statistical significance: reading a food label (HL group 6.03/10 correct vs. standard group 5.49/10 correct; p = .022); confidence ( p = .008); ability to actively manage health (HLQ) ( p = .017), and health knowledge at 6 months (HL group 68% vs. standard group 60% correct, p = .052). HL participants reported being more likely to share course information and rated the program more useful to understand their health., Conclusions: Improving language, literacy, and numeracy generally has potential public health benefits that are retained at 6 months. Integrating health content adds further value to adult basic learning, is feasible, and potentially scalable. [ HLRP: Health Literacy Research and Practice . 2019;3(Suppl.):S42-S57.] ., Plain Language Summary: We compared the effect of an adult education-based health literacy (HL) program versus a standard language, literacy, and numeracy program on students' HL skills and psychosocial outcomes. Although students in both trial arms improved their skills, students in the HL program had better outcomes with higher HL, greater confidence, and higher health knowledge scores at 6 months., (© 2019 McCaffery, Morony, Muscat, et al.)

Background: Shared decision-making (SDM) has been found to be significantly and positively associated with improved patient outcomes. For an SDM process to occur, patients require functional, communicative, and critical health literacy (HL) skills., Objective: This study aimed to evaluate the impact of a program to improve health literacy skills for SDM in adults with lower literacy., Methods: An HL program including an SDM component (HL + SDM) and teaching of the three "AskShareKnow" questions was delivered in adult basic education settings in New South Wales, Australia. The program was evaluated using a partially cluster-randomized controlled trial comparing it to standard language, literacy, and numeracy (LLN) training. We measured the effect of these programs on (1) HL skills for SDM (conceptual knowledge, graphical literacy, health numeracy), (2) types of questions considered important for health decision-making, (3) preferences for control in decision-making, and (4) decisional conflict. We also measured AskShareKnow question recall, use, and evaluation in HL + SDM participants., Key Results: There were 308 participants from 28 classes enrolled in the study. Most participants had limited functional HL (71%) and spoke a language other than English at home (60%). In the primary analysis, the HL + SDM program compared with the standard LLN program significantly increased conceptual knowledge (19.1% difference between groups in students achieving the competence threshold; p = .018) and health numeracy (10.9% difference; p = .032), but not graphical literacy (5.8% difference; p = .896). HL + SDM participants were significantly more likely to consider it important to ask questions that would enable SDM compared to standard LLN participants who prioritized nonmedical procedural questions (all p < .01). There was no difference in preferences for control in decision-making or in decisional conflict. Among HL + SDM participants, 79% ( n = 85) correctly recalled at least one of the AskShareKnow questions immediately post-intervention, and 35% ( n = 29) after 6 months., Conclusions: Teaching SDM content increased participants' HL skills for SDM and changed the nature of the questions they would ask health care professionals in a way that would enable shared health decisions. [ HLRP: Health Literacy Research and Practice . 2019;3(Suppl.):S58-S74.] ., Plain Language Summary: We developed a health literacy program that included a shared decision-making (SDM) section. The program was delivered in adult basic education classes by trained educators and compared to standard language, literacy, and numeracy training. Teaching SDM content increased participants' health literacy skills for SDM and changed the nature of the questions they would ask health care professionals., (© 2019 Muscat, Morony, Trevena, et al.)

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.

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.

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., (© 2018 John Wiley & Sons Ltd.)

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.

This qualitative study compares and contrasts the perspectives of healthcare professionals who treat hepatitis C with those of patients in treatment. Comparative analysis of semi-structured interviews with 20 healthcare professionals and 20 patients undergoing treatment for hepatitis C concluded that patients and healthcare professionals disagreed on the source of communication breakdowns, but both felt that individualised clinical information improved adherence. Stigma was recognised as a barrier to treatment adherence by both patients and healthcare professionals. Limitations of the healthcare system, such as patients receiving inconsistent information and long wait times, negatively impacted both patients and providers.

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.

This study aimed to examine the choice pregnant women make about the amount of fetal genetic information they want from chromosome microarray. Women having invasive prenatal testing in the absence of fetal structural abnormality were recruited in Victoria, Australia. A decision aid for women described 'targeted' analysis as reporting only copy number variants implicated in a highly penetrant and well-described phenotype and 'extended' as additionally reporting variants of uncertain or unknown significance. Participant's choice and demographics were collected by survey before chorionic villus sampling or amniocentesis; psychological data were also collected then and again about 10 days after receiving results. High-resolution single-nucleotide polymorphism array analysis was performed, and a clinical review committee assessed variants for reporting before returning results to participants. Sixty-six participants (59.5%) chose extended analysis and 45 (40.5%) targeted. Choosing extended information was associated with (1) indication for prenatal diagnosis: maternal age alone (adjusted odds ratio (adjOR) 9.6, 95% confidence interval (CI): 1.4-66.0, p= 0.02), or 'other' indication (adjOR 7.1, 95% CI: 1.5-33.1, p= 0.01)); (2) >12 months to conceive (adjOR 4.1, 95% CI: 1.0-17.7, p= 0.05); and (3) Asian background (adjOR 4.67, 95% CI: 1.0-21.0, p= 0.04). No adverse psychological impact occurred in either group. We conclude that offering pregnant women different levels of fetal genetic analysis is warranted, alongside decision support.

Background: Health literacy skills are often assessed in relation to written health materials; however, many important communications are in other formats, especially verbal communication with health care providers., Objective: This qualitative study sought to examine adult learners' experiences of developing verbal health literacy skills within an Australian adult basic education program, and to explore verbal communication and shared decision-making as a constituent domain of health literacy., Methods: We conducted a semi-structured qualitative interview study between September and November 2014 with adult learners who had participated in a single-semester health literacy program that included an integrated shared decision-making component. We analyzed interviews using the Framework method; a matrix-based approach to thematic analysis. A hybrid process of inductive and deductive coding was used to interpret raw data., Key Results: Interviewees were 22 students from six health literacy classes and ranged in age from 18 to 74 years (mean, 48.3). The majority were women ( n = 15) and born outside Australia ( n = 13). Health literacy was generally limited according to the Newest Vital Sign screening tool ( n = 17). The health literacy program appeared to serve two key functions. First, it stimulated awareness that patients have the right to participate in decision-making concerning their treatment and care. Second, it facilitated verbal skill development across the domains of functional (e.g., communicating symptoms), communicative (e.g., asking questions to extract information about treatment options), and critical (e.g., integrating new knowledge with preferences) health literacy., Conclusions: Our findings support the conceptualization of health literacy as a modifiable health asset that is subject to change and improvement as a result of deliberate intervention. Results reinforce verbal health literacy as an important component of health literacy, and draw attention to the hierarchy of verbal skills needed for consumers to become more actively involved in decisions about their health. We present a revised model of health literacy based on our findings. [ Health Literacy Research and Practice . 2017;1(4):e257-e268.] ., Plain Language Summary: We developed a health literacy program for adults with lower literacy to help learners develop skills to talk to health care providers and share health decisions. The program was taught in Australian adult education settings. The article explores the range of health literacy skills needed for communication and decision-making in this study, and presents a model in which verbal skills are an important part of health literacy.

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., (© 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.)

Purpose: This study aimed to explore: (i) patient perceptions of how they are involved in treatment decisions about radiation therapy; (ii) patient knowledge and understanding of treatment; and (iii) what patients value in their interactions with the radiation therapy treatment team., Method: Patients were recruited through radiation oncology departments at metropolitan hospital sites located in Sydney, New South Wales, Australia. Semi-structured interviews were conducted with 21 radiation therapy patients with different types of cancer. Data were analysed using a Framework analysis to compare and contrast patient experiences., Results: Most patients perceived the decision to undergo radiation therapy as agreeing to radiation oncologists recommendations rather than making a choice, but they trusted their radiation oncologist and were happy to follow their advice. Only a few participants reported their radiation oncologist had explained why radiation therapy was recommended, or discussed the benefits and harms. Some participants did not feel prepared for the intensity and disruption of side effects, and conveyed uncertainty about their diagnosis and the potential risk of recurrence. Most patients, irrespective of their type of cancer, valued the treatment team showing a genuine interest in how the treatment was effecting them, and being made to feel part of the department., Conclusion: Greater opportunities are needed to empower patients to ask questions about their uncertainties and concerns. Improvements in these areas will benefit patients and enable them to feel better prepared and know what to expect before and after their treatment., (Copyright © 2017. Published by Elsevier Ltd.)

This qualitative study compares and contrasts the perspectives of healthcare professionals who treat hepatitis C with those of patients in treatment. Comparative analysis of semi-structured interviews with 20 healthcare professionals and 20 patients undergoing treatment for hepatitis C concluded that patients and healthcare professionals disagreed on the source of communication breakdowns, but both felt that individualised clinical information improved adherence. Stigma was recognised as a barrier to treatment adherence by both patients and healthcare professionals. Limitations of the healthcare system, such as patients receiving inconsistent information and long wait times, negatively impacted both patients and providers.

Objective: Radiation oncology consultations involve explanation of complex technical concepts using medical jargon. This study aimed to: analyse types and frequency of medical jargon that radiation therapists (RTs) use during education sessions; identify how patients seek clarification from RTs; and, explore RTs communication strategies., Methods: Education sessions were audio-recorded and transcribed. Medical jargon was analysed using MaxDictio (a vocabulary analysis programme). A distinction was made between specialised (specialised terms used in RT or cancer) and contextual jargon (common everyday words with a different meaning in RT). Qualitative data were analysed using Framework analysis., Results: Fifty-eight patients and 10 RTs participated. Contextual treatment jargon were the most frequently used jargon (32.2%) along with general medical terms (34.6%). Patients appeared uncertain about the number of treatments, side effects, and the risks of radiation. Patients sought clarification by asking RTs to explain or repeat information. RTs replaced jargon with a simpler word, used everyday analogies, and diagrams., Conclusion: Use of medical jargon is common in RT education sessions. RTs used different jargon types to varying degrees, but contextual jargon dominated., Practice Implications: Training RTs how to tailor information to enhance patients' understanding would be beneficial. Future research exploring medical jargon used in other (non-) oncology settings is required., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

Objective: Participation in shared decision-making (SDM) may be difficult for adults with lower literacy. Tools to support consumers to engage in SDM are rarely designed for or evaluated with adults with lower literacy and/or poor English language., Methods: Qualitative interviews were conducted with 26 adults with lower literacy and/or poor English language skills to investigate (a) whether participants where able to read and understand two generic SDM consumer support tools (Smart Health Choices and AskShareKnow question-sets), (b) which question-set was easier for participants and, (c) perceived usefulness of the question-sets and barriers to use. Interviews were analysed using Framework Analysis., Results: Participants had difficulties understanding terms embedded within both the AskShareKnow and Smart Health Choices questions. Our findings suggest that the AskShareKnow question-set was easier for our participants than the Smart Health Choices questions, and clarification using a structured response was reasonably effective. While participants appreciated the usefulness of the questions, they identified important barriers to use., Conclusions: Generic question-sets alone are not sufficient to support SDM for adults with lower literacy and/or poor English-language skills., Practice Implications: To ensure that SDM is accessible to all, we must consider how best to support adults with low literacy and/or poor English-language skills to participate in this process., (Copyright © 2016. Published by Elsevier Ireland Ltd.)

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.

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 .

Objective: Given the scarcity of shared decision-making (SDM) interventions for adults with low literacy, we created a SDM training program tailored to this population to be delivered in adult education settings., Methods: Formative evaluation during program development included a review of the problem and previous efforts to address it, qualitative interviews with the target population, program planning and field testing., Results: A comprehensive SDM training program was developed incorporating core SDM elements. The program aimed to improve students' understanding of SDM and to provide them with the necessary skills (understanding probabilistic risks and benefits, personal values and preferences) and self-efficacy to use an existing set of questions (the AskShareKnow questions) as a means to engage in SDM during healthcare interactions., Conclusions: There is an ethical imperative to develop SDM interventions for adults with lower literacy. Generic training programs delivered direct-to-consumers in adult education settings offer promise in a national and international environment where too few initiatives exist., Practice Implications: Formative evaluation of the program offers practical insights into developing consumer-focused SDM training. The content of the program can be used as a guide for future efforts to engage consumers in SDM., (Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.)

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.

Objective: This study explores the perceptions of patients receiving treatment for Hepatitis C to determine what factors influence their decision to commence treatment, ability to maintain adherence and complete their treatment program., Design: Semi-structured interview techniques were used in a qualitative study of 20 patients undergoing treatment for Chronic Hepatitis C (CHC)., Main Outcome Measures: To explore patients' perceived barriers and facilitators of Hepatitis C treatment adherence and completion., Results: Analysis of patient interviews identified four key themes: (1) motivations for commencing CHC treatment - fear of death and ridding themselves of stigma and shame; (2) the influential role of provider communication - patients reported that information and feedback that was personalised to their needs and lifestyles was the most effective for improving adherence to treatment; (3) facilitators of treatment adherence and completion - social, emotional and practical support improved adherence and completion, as did temporarily ceasing employment; (4) barriers to treatment adherence and completion - these included side effects, stigma, a complicated dosing schedule and limitations of the public healthcare system., Conclusion: To increase treatment adherence and completion rates, a patient-centred approach is required that addresses patients' social, practical, and emotional support needs and adaptive coping strategies.

Background: Making informed decisions about cancer screening involves understanding the benefits and harms in conjunction with personal values. There is little research examining factors associated with informed decision making or participation in screening in the context of a decision aid trial., Objectives: To identify factors associated with informed choice and participation in fecal occult blood testing (FOBT) among lower education populations., Design: Randomized controlled trial of an FOBT decision aid conducted between July and November 2008., Setting: Socioeconomically disadvantaged areas in New South Wales, Australia., Participants: Included 572 adults aged 55 to 64 years with lower education., Measurements: Sociodemographic variables, perceived health literacy, and involvement preferences in decision making were examined to identify predictors of informed choice (knowledge, attitudes, and behavior)., Results: Multivariate analysis identified independent predictors of making an informed choice as having higher education (relative risk [RR], 1.49; 95% confidence interval [CI], 1.13-1.95; P = 0.001), receiving the decision aid (RR, 2.88; 95% CI, 1.87-4.44; P < 0.001), and being male (RR, 1.48; 95% CI, 1.11-1.97; P = 0.009). Participants with no confidence in completing forms and poorer self-reported health were less likely to make an informed choice (RR, 0.74; 95% CI, 0.53-1.03; P = 0.05 and RR, 0.57; 95% CI, 0.36-0.89; P = 0.007, respectively). Independent predictors of completing the FOBT were positive screening attitudes, receiving the standard information, preference for making the decision alone, and knowing that screening may lead to false-positive/negative results., Limitations: We did not objectively measure health literacy., Conclusions: Participants with the lowest levels of education had greater difficulties making an informed choice about participation in bowel screening. Alternative methods are needed to support informed decision making among lower education populations., (© The Author(s) 2014.)

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., (© 2012 John Wiley & Sons Ltd.)

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.

This article explores the concept and measurement of health literacy in the context of shared health decision-making. It draws upon a series of qualitative and quantitative studies undertaken in the development and evaluation of a bowel cancer screening decision aid for low literacy populations. The findings indicate that different types of health literacy (functional, interactive and critical) are required in decision-making and present a set of instruments to assess and discriminate between higher level health literacy skills required for engagement in decision-making. It concludes that greater sophistication in both the definition and measurement of health literacy in research is needed.

Background: Effective use of a patient decision aid (PtDA) can be affected by the user's health literacy and the PtDA's characteristics. Systematic reviews of the relevant literature can guide PtDA developers to attend to the health literacy needs of patients. The reviews reported here aimed to assess:, Methods: We reviewed literature for evidence relevant to these two aims. When high-quality systematic reviews existed, we summarized their evidence. When reviews were unavailable, we conducted our own systematic reviews., Results: Aim 1: In an existing systematic review of PtDA trials, lower health literacy was associated with lower patient health knowledge (14 of 16 eligible studies). Fourteen studies reported practical design strategies to improve knowledge for lower health literacy patients. In our own systematic review, no studies reported on values clarity per se, but in 2 lower health literacy was related to higher decisional uncertainty and regret. Lower health literacy was associated with less desire for involvement in 3 studies, less question-asking in 2, and less patient-centered communication in 4 studies; its effects on other measures of patient involvement were mixed. Only one study assessed the effects of a health literacy intervention on outcomes; it showed that using video to improve the salience of health states reduced decisional uncertainty. Aim 2: In our review of 97 trials, only 3 PtDAs overtly addressed the needs of lower health literacy users. In 90% of trials, user health literacy and readability of the PtDA were not reported. However, increases in knowledge and informed choice were reported in those studies in which health literacy needs were addressed., Conclusion: Lower health literacy affects key decision-making outcomes, but few existing PtDAs have addressed the needs of lower health literacy users. The specific effects of PtDAs designed to mitigate the influence of low health literacy are unknown. More attention to the needs of patients with lower health literacy is indicated, to ensure that PtDAs are appropriate for lower as well as higher health literacy patients.

Objective: To describe a theoretical framework for assessing knowledge about the possible outcomes of participating in bowel cancer screening for the faecal occult blood test., Methods: The content of the knowledge measure was based on the UK General Medical Council's screening guidelines and a theory-based approach to assessing gist knowledge (Fuzzy Trace Theory). It comprised conceptual and numeric questions to assess knowledge of the underlying construct (e.g. false positive concept) and the approximate numbers affected (e.g. likelihood of a false positive). The measure was used in a randomised controlled trial involving 530 adults with low education, to compare the impact of a bowel screening decision aid with a screening information booklet developed for the Australian Government National Bowel Cancer Screening Program., Results: The numeric knowledge scale was particularly responsive to the effects of the decision aid; at follow-up decision aid participants' numeric knowledge was significantly greater than the controls (P<0.001). This contrasts with the conceptual knowledge scale which improved significantly in both groups from baseline to follow-up (P<0.001)., Conclusion: Our theory-based knowledge measure was responsive to change in conceptual knowledge and to the effect on numeric knowledge of a decision aid., Practice Implications: This theoretical framework has the potential to guide the development of knowledge measures in other screening settings., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Objective: To determine whether a decision aid designed for adults with low education and literacy can support informed choice and involvement in decisions about screening for bowel cancer., Design: Randomised controlled trial., Setting: Areas in New South Wales, Australia identified as socioeconomically disadvantaged (low education attainment, high unemployment, and unskilled occupations)., Participants: 572 adults aged between 55 and 64 with low educational attainment, eligible for bowel cancer screening., Intervention: Patient decision aid comprising a paper based interactive booklet (with and without a question prompt list) and a DVD, presenting quantitative risk information on the possible outcomes of screening using faecal occult blood testing compared with no testing. The control group received standard information developed for the Australian national bowel screening programme. All materials and a faecal occult blood test kit were posted directly to people's homes., Main Outcome Measures: Informed choice (adequate knowledge and consistency between attitudes and screening behaviour) and preferences for involvement in screening decisions., Results: Participants who received the decision aid showed higher levels of knowledge than the controls; the mean score (maximum score 12) for the decision aid group was 6.50 (95% confidence interval 6.15 to 6.84) and for the control group was 4.10 (3.85 to 4.36; P<0.001). Attitudes towards screening were less positive in the decision aid group, with 51% of the participants expressing favourable attitudes compared with 65% of participants in the control group (14% difference, 95% confidence interval 5% to 23%; P=0.002). The participation rate for screening was reduced in the decision aid group: completion of faecal occult blood testing was 59% v 75% in the control group (16% difference, 8% to 24%; P=0.001). The decision aid increased the proportion of participants who made an informed choice, from 12% in the control group to 34% in the decision aid group (22% difference, 15% to 29%; P<0.001). More participants in the decision aid group had no decisional conflict about the screening decision compared with the controls (51% v 38%; P=0.02). The groups did not differ for general anxiety or worry about bowel cancer., Conclusions: Tailored decision support information can be effective in supporting informed choices and greater involvement in decisions about faecal occult blood testing among adults with low levels of education, without increasing anxiety or worry about developing bowel cancer. Using a decision aid to make an informed choice may, however, lead to lower uptake of screening. Trial registration ClinicalTrials.gov NCT00765869 and Australian New Zealand Clinical Trials Registry 12608000011381.

There have been major advances in techniques to increase patient involvement in health decisions with the benefits of greater involvement and shared decision making now widely recognized. However, there has been little attention in the development of tools and strategies to support patient participation among adults with lower literacy, a group with poor health knowledge, limited involvement in health decisions, and poor health outcomes. The authors put forward a framework to consider the different stages of shared health decision making and the tasks and skills required to achieve each stage. They consider where current research exists in the decision making literature and where more is needed if adults with limited literacy are to be better engaged in shared decision making in health care.

Education and health literacy potentially limit a person's ability to be involved in decisions about their health. Few studies, however, have explored understandings and experiences of involvement in decision making among patients varying in education and health literacy. This paper reports on a qualitative interview study of 73 men and women living in Sydney, Australia, with varying education and functional health literacy levels. Participants were recruited from a community sample with lower educational attainment, plus an educated sample of University of Sydney alumni. The transcripts were analysed using the 'Framework' approach, a matrix-based method of thematic analysis. We found that participants with different education conceptualised their involvement in decision making in diverse ways. Participants with higher education appeared to conceive their involvement as sharing the responsibility with the doctor throughout the decision-making process. This entailed verifying the credibility of the information and exploring options beyond those presented in the consultation. They also viewed themselves as helping others in their health decisions and acting as information resources. In contrast, participants with lower education appeared to conceive their involvement in terms of consenting to an option recommended by the doctor, and having responsibility for the ultimate decision, to agree or disagree with the recommendation. They also described how relatives and friends sought information on their behalf and played a key role in their decisions. Both education groups described how aspects of the patient-practitioner relationship (e.g. continuity, negotiation, trust) and the practitioner's interpersonal communication skills influenced their involvement. Health information served a variety of needs for all groups (e.g. supporting psychosocial, practical and decision support needs). These findings have practical implications for how to involve patients with different education and literacy levels in decision making, and highlight the important role of the patient-practitioner relationship in the process of decision making.

Objective: Several countries have recently implemented national bowel cancer screening programs. To ensure equal access to screening, information is needed to suit adults ranging in literacy level. Decision aids are effective in providing balanced information and have been applied in screening. However, few have been designed for populations with lower education and literacy. This article describes the development and preliminary evaluation of a bowel cancer screening decision aid for this group., Method: We conducted face-to-face interviews with adults of varying literacy ability, to develop the decision aid (Stage 1). We applied principles of plain language, created visual illustrations to support key textual messages, and used colour coding to direct the reader through the booklet. We then explored its acceptability and comprehension among consumers with higher and lower education (Stage 2). Participants were recruited from a community sample with lower education and a university alumni network., Results: A total of 75 participants were interviewed, 43 with lower educational attainment and 32 with university education. The decision aid was positively reviewed by both education groups. Results highlighted the need to clarify the purpose of the decision aid and the availability of choice in the context of screening, especially to those with lower education., Conclusion: The 2 stage iterative development process identified important factors to consider in the development of decision tools for this target group, and is recommended., Practice Implications: Our findings have implications for how to support people with lower education and literacy make informed screening decisions.

Context: The use of written decision aids (DAs) in clinical practice has proliferated. However, few DAs have been developed for low literacy users, despite this group having low knowledge about healthcare and lacking involvement in health decisions., Objective: To explore the information needs and understanding of adults with varying literacy in relation to colorectal cancer screening, and to consider their responses to two versions of a decision aid. Participants Thirty-three men and women aged 45-74 years were recruited from Adult Basic Education classes (n = 17) and University Continuing Education programs (n = 16)., Methods: We used qualitative methods (in-depth, semi-structured interviews) to compare and contrast the views of adults with lower and higher literacy levels, to gain a better understanding of how people with lower literacy value and interpret specific DA content and components; and determine whether needs and preferences are specific to lower literacy groups or generic across the broad literacy spectrum., Results: Regardless of literacy perspective, participants' interpretations of the DA were shaped by their prior knowledge and expectations, as well as their values and preferences. This influenced perceptions of the DAs role in supporting informed decision making. A linguistic theoretical model was applied to interpret the findings. This facilitated considerations beyond the traditional focus on the readability of materials., Conclusion: Decision aids developers may find it useful to apply alternative approaches (linguistic) when creating DAs for consumers of varying literacy.