'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 Risk-Reducing Effect of Aspirin in Lynch Syndrome Carriers: Development and Evaluation of an Educational Leaflet.

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.

Recovering and rebuilding after COVID-19: What are the best ways to support medical radiation science students?

The Covid-19 pandemic and lockdown periods have impacted Medical Radiation Science (MRS) students professionally and personally. This Editorial provides commentary on two papers that generate discussion on how MRS students can be supported during these challenging times. We highlight how Universities and clinical departments can support students through tailored and proactive support, building resilience and peer group supervision.

A Systematic Review and Meta-Analysis of Patient Decision Aids for Socially Disadvantaged Populations: Update from the International Patient Decision Aid Standards (IDPAS).

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 [I2 = 96%]) and patient-clinician communication (relative risk = 1.62, 95% CI 1.42, 1.84 [I2 = 0%]). PtDAs reduced decisional conflict (mean difference = -9.59; 95% CI -18.94, -0.24 [I2 = 84%]) and the proportion undecided (relative risk = 0.39; 95% CI 0.28, 0.53 [I2 = 75%]). PtDAs did not affect anxiety (standardized mean difference = 0.02, 95% CI -0.22, 0.26 [I2 = 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].

Addressing Health Literacy in Patient Decision Aids: An Update from the International Patient Decision Aid Standards.

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 (χ2 = 14.11, P = 0.0002, I2 = 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.

Do Personal Stories Make Patient Decision Aids More Effective? An Update from the International Patient Decision Aids Standards.

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.

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.

Learners' experience and perceived impact of a health literacy program in adult basic education: a qualitative study.

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.

Evaluation of an Australian Health Literacy Program Delivered in Adult Education Settings.

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.

Skills for Shared Decision-Making: Evaluation of a Health Literacy Program for Consumers with Lower Literacy Levels.

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.

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.

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.

Offering pregnant women different levels of genetic information from prenatal chromosome microarray: a prospective study.

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.

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.

Listening to both sides: A qualitative comparison between patients with hepatitis C and their healthcare professionals' perceptions of the facilitators and barriers to hepatitis C treatment adherence and completion.

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.

Patients' experience of decision-making and receiving information during radiation therapy: A qualitative study.

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.

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.