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Background This paper presents an analysis of 32 narratives written by patients waiting for assessment at a transgender health clinic (THC) in England. Narratives are autobiographical free texts, designed to allow patients to describe in their own words their experiences of their gender identity and/or transition prior to a clinic appointment, as part of the assessment process. Objective Narratives were analysed to identify actions prospective patients had taken to manage their (usually lengthy) waiting times, so that these ‘coping strategies’ could be shared with future patients. Design Corpus linguistic methodology was utilized to identify common patterns across the whole corpus of text‐based data, augmented with more detailed sociolinguistic analysis of individual narratives. Results There are broad commonalities in the way the transition experience is described across the corpus in terms of presentation of key experiences and feelings. There are specific descriptions of a number of recurring coping strategies, both positive and negative. Conclusion The empowerment value of writing these narratives may be limited; the existence of recurring key features suggests that patients may feel they have to present their experiences in certain ways to be accepted for treatment. However, dissemination of some positive coping strategies may help future clients of THCs to better cope with waiting times, as well as assisting practitioners in THCs in supporting their patients during this wait. Patient/Public Contribution The clinic's Service Users’ Research Advisory Group contributed to formulating the objective and design of the study. Results were presented at the clinic's annual PPI conference.

Background Patients need medication and medical condition‐related information to better self‐manage their health. Health‐care professionals (HCPs) should be able to actively provide information outside of one‐on‐one consultations; however, patient consent may be required. Objective To investigate the Australian public's preferences, and factors that may influence their preferences, towards an opt‐in versus an opt‐out approach to health communication. Design A cross‐sectional study using a structured questionnaire administered via Computer‐Assisted Telephone Interviewing. Setting and participants Participants across Australia who were adults, English‐speaking and had a long‐term medical condition. Main outcome measures Preferences for opt‐in vs opt‐out approach to receiving follow‐up tailored information. Results A total of 8683 calls were made to achieve the required sample size of 589 completed surveys. Many (346/589; 58.7%) indicated that they were interested in receiving tailored, ongoing follow‐up information from their HCP. Nearly half (n = 281; 47.7%) preferred an opt‐in service and 293/589 (49.7%) an opt‐out service for receiving follow‐up information. Reasons for preferring an opt‐in service were being in control of the information received (n = 254); able to make a decision that is best for them (n = 245); opt‐in service would save time for HCPs (n = 217); they may not want or need the information (n = 240). Many (n = 255) felt that an opt‐out service should be part of the normal duty of care of their HCP and believed (n = 267) that this approach would ensure that everyone has access to information. Conclusions Respondents were interested in receiving tailored information outside of consultation times. However, preferences for an opt‐in or opt‐out approach were divided.

Background Eliciting residents’ priorities for their care is fundamental to delivering person‐centred care in residential aged care facilities (RACFs). Prioritization involves ordering different aspects of care in relation to one another by level of importance. By understanding residents’ priorities, care can be tailored to residents’ needs while considering practical limitations of RACFs. Objectives To investigate aged care residents’ prioritization of care. Design A mixed‐methods study comprising Q methodology and qualitative methods. Setting and participants Thirty‐eight residents living in one of five Australian RACFs. Method Participants completed a card–sorting activity using Q methodology in which they ordered 34 aspects of care on a pre‐defined grid by level of importance. Data were analysed using inverted factor analysis to identify factors representing shared viewpoints. Participants also completed a think‐aloud task, demographic questionnaire, post‐sorting interview and semi‐structured interview. Inductive content analysis of qualitative data was conducted to interpret shared viewpoints and to identify influences on prioritization decision making. Results Four viewpoints on care prioritization were identified through Q methodology: Maintaining a sense of spirituality and self in residential care; information sharing and family involvement; self‐reliance; and timely access to staff member support. Across the participant sample, residents prioritized being treated with respect, the management of medical conditions, and their independence. Inductive content analysis revealed four influences on prioritization decisions: level of dependency; dynamic needs; indifference; and availability of staff. Conclusions Recommendations for providing care that align with residents’ priorities include establishing open communication channels with residents, supporting residents’ independence and enforcing safer staffing ratios.

In recent years, cultural safety has been proposed as a transformative approach to health care allowing improved consideration of Indigenous patient needs, expectations, rights and identities. This community‐based participatory study aimed to identify potential barriers and enablers to cultural safety in health care provided to Atikamekw living with diabetes in Québec, Canada. Based on a qualitative descriptive design, the study uses talking circles as a data collection strategy. Three talking circles were conducted with Atikamekw living with diabetes and caregivers, as well as with health professionals of the family medicine teaching clinic providing services to the community. Two team members performed deductive thematic analysis based on key dimensions of cultural safety. Results highlight four categories of barriers and enablers to cultural safety for Atikamekw living with diabetes, related to social determinants of health (including colonialism), health services organization, language and communication, as well as Atikamekw traditional practices and cultural perspectives of health. This study is one of the few that provides concrete suggestions to address key aspects of diabetes care in a culturally respectful way. Our findings indicate that potential enablers of cultural safety reside at different (from individual to structural) levels of change. Solutions in this matter will require strong political will and policy support to ensure intervention sustainability. Patient or public contribution Partners and patients have been involved in identifying the need for this study, framing the research question, developing the data collection tools, recruiting participants and interpreting results.

Background Breast asymmetry is a common post‐operative outcome for women with breast cancer. Quality of cosmetic result is viewed clinically as a critical endpoint of surgery. However, research suggests that aesthetic standards governing breast reconstruction can be unrealistic and may problematically enforce feminine appearance norms. The aim of reconstructive procedures is to help women live well with and beyond breast cancer. Therefore, understanding how patients and clinicians talk about surgical outcomes is important. However, we lack evidence about such discussions. Objective To examine clinical communication about breast symmetry in real‐time consultations in a breast cancer clinic. Design Seventy‐three consultations between 16 clinicians and 47 patients were video‐recorded, transcribed and analysed using conversation analysis. Results In most cases, patients do considerable interactional work to persuade clinicians of the validity of their concerns regarding breast asymmetry, and clinicians legitimize these concerns, aligning with patients. In a significant minority of cases, patients appear more accepting of their treatment outcome, but clinicians prioritize symmetry or treat symmetry with the presence of breast tissue as normative, generating misalignment between clinician and patient. Conclusion Current clinical communication guidelines and practices may inadvertently reinforce culturally normative assumptions regarding the desirability of full, symmetrical breasts that are not held by all women. Clinicians and medical educators may benefit from detailed engagement with recordings of clinical communication like those analysed here, to reflect on which communicative practices may work best to attend to a patient's individual stance on breast symmetry, and optimize doctor‐patient alignment.

Background Patients and carers should be actively involved in patient safety and empowered to use person‐centred approaches where they are asked to both identify safety concerns and partner in preventing them. Objectives The aim of this study was to co‐design a patient safety guide for primary care (PSG‐PC) to support patients and carers to address key patient safety questions and identify key points where they can make their care safer. The objectives were to i) identify when and how patients and carers can be involved in primary care patient safety, and ii) identify the relevant information to include in the PSG‐PC. Design An experience‐based co‐design approach. Setting and Participants We conducted three workshops with patients, carers, community pharmacists and general practitioners to develop and refine the PSG‐PC. Results Participants identified both explicit and implicit issues of primary care patient safety especially relating to technical and relational components of involving patients and carers. The importance of communication, understanding roles and responsibilities, and developing partnerships between patients and health‐care providers were considered essential for actively involving patients in patient safety. Co‐developing the PSG‐PC provided insight to improve care to develop the PSG‐PC. Discussion The PSG‐PC is the first guide to be developed for primary care, co‐designed with patients, carers, general practitioners and pharmacists. The PSG‐PC will support patients and carers to partner with health‐care professionals to improve patient safety addressing international and national priorities to continuously improve patient safety.

Objective To explore socioeconomic status (SES) differences in patterns of doctor-patient communication within head and neck cancer clinics and why such differences exist. Methods Thirty-six head and neck cancer review appointments with five Physicians were observed and audio-taped, along with follow-up interviews involving 32 patients. Data were analysed using Thematic Analysis, and compared by patient SES (education, occupation and Indices of Multiple Deprivation). Results Three main themes were identified: (a) Physicians used more humour and small talk in their consultations with high SES patients; (b) Low SES patients were more passive in their participation, engaged in less agenda setting and information-seeking, and framed their clinical experience differently; (c) Low SES patients had different preferences for involvement, defining involvement differently to high SES patients and were seen to take a more stoical approach. Conclusion Low SES patients take a more passive role in medical consultations, engage in less relational talk and are less likely to raise concerns, but were satisfied with this. Physicians may adapt their communication behaviour in response to low SES patients' expectations and preferences. Practice implications A question prompt list may help low SES patients to raise concerns during their consultations. This may reduce inequalities in communication and health.

Background Let's Discuss Health (LDH) is a website that encourages patients to prepare their health-care encounters by providing communication training, review of topics and questions that are important to them. Objective To describe LDH implementation during primary care (PC) visits for chronic illnesses. Methods Design: Descriptive mixed-method study. Setting 6 PC clinics. Participants 156 patients and 51 health-care providers (HCP). Intervention LDH website implementation. Outcome measures Perceived quality and usefulness of LDH; perceived quality of HCP-patient communication; patient activation; LDH integration in routine PC practices and barriers to its use. Results Patients reported a positive perception of the website in that it helped them to adopt an active role in the encounters; recall their visit agenda and reduce encounter-related stress; feel more confident to ask questions, feel more motivated to prepare their future medical visits and improve their chronic illness management. However, a certain disconnect emerged between HCP and patient perceptions as to the value of LDH in promoting a sense of partnership and collaboration. The main barriers to the use of LDH are HCP lack of interest, limited access to technology, lack of time and language barriers. Conclusion Our findings indicate that it is advantageous for patients to prepare their medical encounters. However, the study needs to be replicated in other medical environments using larger and more diverse samples. Patient and public contribution Patient partners were involved in the conduct of this study.

Background Missed test-results and failure to follow-up test-results are major patient safety concerns. Strategies to improve test-results management have predominantly focused on clinician-based interventions, with patients principally involved in studies of test-result communication preferences, the impact of patient portals or experiences with reporting processes in primary care. Objective To identify consumer perspectives and experiences of the challenges they have faced with test-results management, through consumer participation in qualitative data analysis. Design and participants Volunteers (n = 10) were recruited to participate in a health consumer reference group workshop on test-results management. Prior to the workshop, consumers selected topics for discussion using a preference poll. During the workshop, consumers participated in qualitative data analysis of de-identified excerpts of previously collected interview data discussing hospital test-results management. Researchers (n = 5) guided consumers through the analytical process and discussion of themes. Discussions were audio-recorded and transcribed for qualitative analysis. Results Consumer-selected topics for discussion were 'Transitions of Care' and 'Access'. Consumer data analysis prompted broader discussion including lived experiences. Following the workshop, a second level of content analysis pinpointed issues with implications for patient safety highlighting that consumers were astutely aware of macrolevel 'Systems Factors' relating to 'Emergency Departments' and the health system, as well as microlevel 'Patient Factors' (eg patient preferences and circumstances) which impact a patient's understanding during the 'Communication' (clinician to patient/between clinicians) of test-results 'Information' (or lack thereof). Conclusions Consumers identified the challenges patients experience with test-results management, and our findings highlight areas for potential improvement in patient safety. Patient or public contribution Ten health consumer volunteers actively participated in the test-results management data analysis workshop conducted in this study. Two health consumers also volunteered to read and comment on the draft manuscript.

Background Co-production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co-production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation. Objective To address these challenges, we designed the first large co-productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co-productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges. Design Two-year co-produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies. Setting and participants NHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co-productive partners with the research team. Results Co-productive strategies enabled a smooth passage through four different ethics processes within the 10-week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area. Discussion and conclusion Although expensive and time consuming, co-production was effective and added value to research processes and study outcomes.

Background Measurement of physicians' competence in shared decision making (SDM) remains challenging with frequent disagreement between assessment methods. Objective To conceptualize and measure physicians' SDM competence as an organized network of behavioural skills and to determine whether processing patient-reported data according to this model can be used to predict observer-rated competence. Design Secondary analysis of an observational study. Setting and participants Primary and specialty outpatient care physicians and consecutively recruited adult patients with a chronic condition who faced a treatment decision with multiple acceptable choices. Measures Network parameters constructed from patients' assessment of physicians' SDM skills as measured by the 9-item Shared Decision Making Questionnaire (SDM-Q-9) and observer-rated SDM competence of physicians measured by three widely used observer-rated instruments. Results 29 physicians (12 female, 17 male; mean age 50.3 years) recruited 310 patients (59.4% female, 40.6% male; mean age 54.0 years) facing a decision mainly regarding type 2 diabetes (36.4%), chronic back pain (32.8%) or depressive disorder (26.8%). Although most investigated skills were interrelated, elicitation of the patient's treatment preferences showed the strongest associations with the other skills. Network parameters of this skill were also decisive in predicting observer-rated competence. Correlation between predicted competence scores and observer-rated measurements ranged from 0.710 to 0.785. Conclusions Conceptualizing physicians' SDM competence as a network of interacting skills enables the measurement of observer-rated competence using patient-reported data. In addition to theoretical implications for defining and training medical competences, the findings open a new way to measure physicians' SDM competence under routine conditions.

Background Therapeutic interventions for people with inflammatory arthritis (IA) increasingly involve multidisciplinary teams and strive to foster patient-centred care and shared decision making. Participation in health-care decisions requires patients to assert themselves and negotiate power in encounters with clinicians; however, clinical contexts often afford less authority for patients than clinicians. This disadvantage may inhibit patients' involvement in their own health care. Objective To identify communication attributes, IA patients use to influence and negotiate their treatment with members of their health-care network. Method A qualitative social network approach was used to analyse data from a larger study that investigated IA patients' overall experiences of multidisciplinary care. Fourteen patients with IA attended individual semi-structured interviews. Researchers used thematic analysis to identify patterns of assertiveness and influence in the data. Results Participants experienced loss of identity, control and agency in addition to the physical symptoms of IA. However, they had a sense of personal responsibility for managing their health care. Perceptions of health-care team support enhanced patients' influence in treatment negotiations. Notably, there appeared to be an underlying tension between being empowered or disempowered. Discussion and conclusions The findings have significant implications for treatment decision communication approaches to IA care. A social network perspective may provide a pathway for clinicians to better understand the complexities of communication with their patients. This approach may reduce unequal power dynamics that occur within clinician/patient interactions and afford people with IA agency, control and affirmation of identity within their health-care network.

Background Dissemination of research findings to past study participants and the community‐at‐large is important. Yet, a standardized process for research dissemination is needed to report results to the community. Objective We developed a framework and strategies to guide community‐academic partnerships in community‐targeted, dissemination efforts. Methods From 2017 to 2019, a community‐academic partnership was formed in Nashville, Tennessee, and iteratively developed a framework and strategies for research dissemination using cognitive interviews. A deductive, constant comparative analysis was conducted on interview responses to examine framework and strategy content. Feedback was used to finalize the framework and strategies for the evaluation. Using existing data, the framework's utility was evaluated in seven town hall meetings (n = 117). Bivariate analyses determined its effect on community members’ trust and willingness to participate in research using pre‐ and post‐surveys. Evaluation results were used to finalize the framework. Results The Community‐Engaged Research Dissemination (CERD) framework has two phases. Phase one is a preliminary planning phase with two steps, and phase two is the four‐step dissemination process. There are five standards to be upheld conducting these phases. We provide competencies for each component. Three feasible, culturally adapted strategies were developed as exemplars to disseminate research findings. Using pre‐ and post‐surveys for intervention evaluation, there was a significant difference in trust in medical research and researchers (P = .006) and willingness to participate in research (P = .013). Discussion and Conclusion The CERD framework can potentially standardize the process and compare the effect of dissemination efforts on the community's trust and willingness to participate in research.

Objective: This study aimed to explore whether positive impacts were sustained and unanticipated ripple effects had occurred four years after the implementation of interventions to improve cross-cultural communication in primary care. Background: Sustaining the implementation of change using complex interventions is challenging. The EU-funded "RESTORE" study implemented guidelines and training on cross-cultural communication in five Primary Care sites in Europe, combining implementation theory (Normalisation Process Theory) with participatory methodology (participatory learning and action-PLA). There were positive impacts on knowledge, skills and clinical routines. Design, setting and participants: Four of the five original sites (England, Ireland, Greece, The Netherlands) were available for this qualitative follow-up study. The study population (N = 44) was primary healthcare staff and migrants, most of whom had participated in RESTORE. INTERVENTION; MAIN OUTCOME MEASURES: PLA-style focus groups and interviews explored routine practice during consultations with migrants. Etic cards based on the effects of RESTORE stimulated the discussion. Deductive framework analysis was performed in each country followed by comparative data analysis and synthesis. Results: Changes in knowledge, attitudes and behaviour with regard to consultations with migrants were sustained and migrants felt empowered by their participation in RESTORE. There were ongoing concerns about macro level factors, like the political climate and financial policies, negatively affecting migrant healthcare. Conclusion: There were sustained effects in clinical settings, and additional unanticipated positive ripple effects, due in part, from the participatory approach employed.

Background Patient-centred care (PCC) improves health-care experiences and outcomes. Women with ductal carcinoma in situ (DCIS) and clinicians have reported communication difficulties. Little prior research has studied how to improve communication and PCC for DCIS. Objective This study explored how to achieve PCC for DCIS. Design Canadian women treated for DCIS from five provinces participated in semi-structured focus groups based on a 6-domain cancer-specific PCC framework to discuss communication about DCIS. Data were analysed using constant comparative technique. Setting and participants Thirty-five women aged 30 to 86 participated in five focus groups at five hospitals. Results Women said their clinicians used multiple approaches for fostering a healing relationship; however, most described an absence of desired information or behaviour to exchange information, respond to emotions, manage uncertainty, make decisions and enable self-management. Most women were confused by terminology, offered little information about the risks of progression/recurrence, uninformed about treatment benefits and risks, frustrated with lack of engagement in decision making, given little information about follow-up plans or self-care advice, and received no acknowledgement or offer of emotional support. Discussion and conclusions By comparing the accounts of women with DCIS to a PCC framework, we identified limitations and inconsistencies in women's lived experience of communication about DCIS, and approaches by which clinicians can more consistently achieve PCC for DCIS. Future research should develop and evaluate informational tools to support PCC for DCIS.

Background The development of novel diagnostics enables increasingly earlier diagnosis of Alzheimer's disease (AD). Timely diagnosis may benefit patients by reducing their uncertainty regarding the cause of symptoms, yet does not always provide patients with the desired certainty. Objective To examine, using both quantitative and qualitative methods, uncertainty communicated by memory clinic clinicians in post‐diagnostic testing consultations with patients and their caregivers. Methods First, we identified all uncertainty expressions of 22 clinicians in audiotaped post‐diagnostic testing consultations with 78 patients. Second, we statistically explored relationships between patient/clinician characteristics and uncertainty expressions. Third, the transcribed uncertainty expressions were qualitatively analysed, determining the topic to which they pertained, their source and initiator/elicitor (clinicians/patients/caregivers). Results Within 57/78 (73%) consultations, clinicians expressed in total 115 uncertainties, of which 37% elicited by the patient or caregiver. No apparent relationships were found between patient/clinician characteristics and whether or not, and how often clinicians expressed uncertainty. Uncertainty expressions pertained to ten different topics, most frequently patient's diagnosis and symptom progression. Expressed uncertainty was mostly related to the unpredictability of the future and limits to available knowledge. Discussion and conclusions The majority of clinicians openly discussed the limits of scientific knowledge and diagnostic testing with patients and caregivers in the dementia context. Noticeably, clinicians did not discuss uncertainty in about one quarter of consultations. More evidence is needed on the beneficial and/or harmful effects on patients of discussing uncertainty with them. This knowledge can be used to support clinicians to optimally convey uncertainty and facilitate patients' uncertainty management.

Background Earlier end-of-life communication is critical for people with heart failure given the uncertainty and high-risk of mortality in illness. Despite this, end-of-life communication is uncommon in heart failure. Left unaddressed, lack of end-of-life discussions can lead to discordant care at the end of life. Objective This study explores patients' and caregivers' understanding of illness, experiences of uncertainty, and perceptions of end-of-life discussions in advanced illness. Design Interpretive descriptive qualitative study of older adults with heart failure and family caregivers. Fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. Interviews were transcribed verbatim and content analysis was used to analyse the data. Main results Understanding of illness was shaped by participants' illness-related experiences (e.g. symptoms, hospitalizations and self-care routines) and the ability to adapt to challenges of illness. Participants were knowledgeable of heart failure management, and yet, were limited in their understanding of the consequences of illness. Participants adapted to the challenges of illness which appeared to influence their perception of overall health. Uncertainty reflected participants' inability to connect manifestations of heart failure as part of the progression of illness towards the end of life. Most participants had not engaged in prior end-of-life discussions. Conclusion Detailed knowledge of heart failure management does not necessarily translate to an understanding of the consequences of illness. The ability to adapt to illness-related challenges may delay older adults and family caregivers from engaging in end-of-life discussions. Future research is needed to examine the impact of addressing the consequences of illness in facilitating earlier end-of-life communication.

Background The degree to which patients participate in their care can have a positive impact on health outcomes. This review aimed to map the current literature on patient participation behaviours in interactions with physicians and the extent to which differences in these behaviours can be explained by socio-economic status (SES). Search strategy Four electronic databases were searched from 1980 onwards using key words related to socio-economic status and patient participation behaviours. Study selection Titles, abstracts and full texts were screened by two reviewers, with the second reviewer screening 20% of all entries. Data extraction Data on year of publication, country, patient population, setting, patient participation behaviour studied, and SES measure used were extracted. Main results Forty-nine studies were included in the review. Most studies were conducted in the United States, and the most commonly studied patient participation behaviour was involvement in decision making. Most studies measured SES using education as an indicator, with very few studies using occupation as a measure. Many studies did not report on participants' medical condition or study setting. Patient participation in their health-care appointment increased with increasing SES in 24 studies, although in 27 studies no significant association was found. Discussion and conclusions Current literature was found to be mainly US-centric. Many studies did not specify participants' medical condition or in what setting the study was undertaken. More studies are needed on less commonly studied patient participation behaviours. It would be helpful for further studies to also include a wider range of SES indicators.

Background: Family carers of adults with learning disability and behaviours that challenge lead complex and stressful lives. Their caring role can leave them isolated and unsupported. In the UK effective services designed to build resilience for people in long-term caring roles are lacking. There are none (to our knowledge) designed using a participatory health research (PHR) approach with family carers and professionals. Objective: With Positive Behaviour Support (PBS) and Mindfulness and Acceptance and Commitment Therapy (ACT) as key elements, a PHR approach was used to understand the basis for a successful course that supported the capabilities and resilience of family members in long-term caring roles. Design: The research was guided by the principles of PHR with participation as the defining principle throughout. Central to the research were reflexive conversations (communicative spaces) where diverse knowledges were shared and critiqued. Findings: Mindfulness/ACT can change long-standing response behaviours and build personal resilience and improve mental health. Elements enabling positive change included a facilitation approach for collaborative reflexivity and the complementary, interactive approach to collaborative enquiry for learning and decision making afforded by PHR. Discussion: The use of PHR accessed knowledges that would have been lost to more traditional, professional-expert driven processes and facilitated change in constructs for action for both professionals and family carers. Findings challenge service providers to consider how experiential knowledge has agency in professional practice and service design. Reflection on the PHR process across the FaBPos project led to a re-consideration of quality issues in relation to PHR and participation.

Background A large proportion of ambulance callouts are for men with mental health and/or alcohol and other drug (AOD) problems, but little is known about their experiences of care. This study aimed to describe men's experiences of ambulance care for mental health and/or AOD problems, and factors that influence their care. Methods Interviews were undertaken with 30 men who used an ambulance service for mental health and/or AOD problems in Australia. Interviews were analysed using the Framework approach to thematic analysis. Results Three interconnected themes were abstracted from the data: (a) professionalism and compassion, (b) communication and (c) handover to emergency department staff. Positive experiences often involved paramedics communicating effectively and conveying compassion throughout the episode of care. Conversely, negative experiences often involved a perceived lack of professionalism, and poor communication, especially at handover to emergency department staff. Conclusion Increased training and organizational measures may be needed to enhance paramedics' communication when providing care to men with mental health and/or AOD problems.

Background Patients are increasingly recognized as playing important roles in improving health services. Little is known about the mechanisms by which patients develop and diffuse local innovations in a complex health-care system. Objective To ascertain how diffusion of an innovation, My Medication Passport, occurred and roles played by patients in it. Design Case study: quantitative mapping of innovation's diffusion and analysis of the routes and occupations of those through whom the innovation spread; documentary analysis; reflective assessment of patient's roles. Setting and participants NHS Trusts, third sector organizations, patients and health-care professionals. Interventions studied Co-produced action to raise awareness and influence use of the innovation; order database which enabled ease of access to the innovation. Main outcome measures Geographical spread of innovation; occupations of individuals; types of organizations using the innovation. Results The innovation spread from initial development and use in Northwest London across the UK and beyond. Key roles played by patients were as follows: co-producer; advocate; relationship builder; relationship broker; planner; presenter; awareness raiser; trainer; networker. Patients identified and introduced potential audiences and users to MMP, using social, organizational, sectoral, lay and professional networks to do so. They organized a range of awareness-raising and communication activities, monitored feedback, evaluated the impact and responded to new interest. Discussion and conclusions The roles of patients in diffusing innovations are under-recognized. Collaborative working between patients, carers and health-care professionals in planning and progressing the use and supporting diffusion of the innovation was important. Principles described in this study are relevant to progressing other patient-led ideas for innovative changes relating to health service development.

Objectives To determine the feasibility of pragmatic implementation strategies for three good questions (in Dutch: Drie Goede Vragen; 3GV. What are my options; what are the risks and benefits related to these options; and what does this mean for my situation?) to increase shared decision‐making (SDM) efforts in Dutch secondary care, and identify barriers and facilitators of implementation. Methods Convergent mixed‐method design: pre‐post surveys with patients attending one of six clinical departments in a Dutch Hospital, post‐intervention interviews with patients and health‐care professionals. Primary outcomes: feasibility (reach, use of 3GV). Secondary outcomes: SDM, experiences with 3GV and decision making. Interviews focused on barriers and facilitators of 3GV use. Interviews were content coded and categorized into determinants of behaviour change. Results 35% of the respondents who had heard of 3GV (52%) used all three questions. 3GV use did not lead to more SDM (SDMQ9 M = Δ0.3;SE = 2.2) but patients felt empowered to decide (88%) and to SDM (86%). Barriers were as follows: time investment, other SDM projects and perception that the need to use 3GV differs per patient/consultation. Respondents preferred to use 3GV as they saw fit for the consultation, instead of literally asking them. Facilitators: easy, accessible information materials that can be flexibly used. Conclusion Implementation of 3GV seemed feasible, although influenced by contextual characteristics (eg type of decisions, patients, on‐going interventions). 3GV contributed to important elements of SDM, and respondents were willing to apply them in a way that suited their situation. Practice implications We recommend continuation of current and new implementation strategies to enable 3GV implementation in secondary care.

Introduction One of the ethical issues surrounding birth cohort studies is how to obtain informed assent from children as they grow up. What and how parents tell their children affects children's future choices about the study, yet few studies have focused on parents’ influence on children. Objective This study examines parents’ attitudes towards telling their children about their participation in a specific birth cohort study. Methods We conducted surveys and in‐depth interviews with the parents of children who participated in the “Japan Environment and Children's Study” (JECS), which follows children from the foetal stage to age 13. Results Forty‐four mothers and 23 fathers answered the survey, and 11 mothers and 3 fathers participated in in‐depth interviews. Parents’ attitudes towards “telling” were categorized into 3 communication styles depending on their perception of the risk/benefits for their children. Most parents predicted that the study would benefit their children and preferred “directive telling,” which we divided into “empowered telling” (provides children with a positive identity as participants) and “persuasive telling” (attempts to persuade children even if they express reluctance as they grow). A few parents, weighing the study's potential risk, preferred “non‐directive telling,” which respects children's choices even if that means withdrawing from the study. Discussion While “directive telling” may lead children to have positive associations with the study, children should also be told about the risks. Investigators can provide materials that support parents and give children age‐appropriate information about their participation, as well as ensure opportunities for children to express their feelings.

BackgroundThe number of people with multiple chronic conditions increases as a result of ageing. To deal with the complex health-care needs of these patients, it is important that health-care professionals collaborate in interprofessional teams. To deliver patient-centred care, it is often recommended to include the patient as a member of the team.ObjectiveTo gain more insight into how health-care professionals and patients, who are used to participate in interprofessional team meetings, experience and organize patient participation in the team meetings.MethodsA qualitative study including observations of meetings (n=8), followed by semi-structured interviews with participating health-care professionals (n=8), patients and/or relatives (n=11). Professionals and patients were asked about their experiences of patient participation immediately after the team meetings. Results from both observations and interviews were analysed using content analysis.ResultsThe findings show a variety of influencing factors related to patient participation that can be divided into five categories: (i) structure and task distribution, (ii) group composition, (iii) relationship between professionals and patients or relatives, (iv) patients' characteristics and (v) the purpose of the meeting.ConclusionPatient participation during team meetings was appreciated by professionals and patients. A tailored approach to patient involvement during team meetings is preferable. When considering the presence of patients in team meetings, it is recommended to pay attention to patients' willingness and ability to participate, and the necessary information shared before the meeting. Participating patients seem to appreciate support and preparation for the meeting.

Background Patient-clinician communication is thought to be central to care outcomes, but when and how communication affects patient outcomes is not well understood. Objective We propose a conceptual model and classification framework upon which the empirical evidence base for the impact of patient-clinician communication can be summarized and further built. Design We use the proposed model and framework to summarize findings from two recent systematic reviews, one evaluating the use of shared decision making (SDM) on cancer care outcomes and the other evaluating the role of physician recommendation in cancer screening use. Key results Using this approach, we identified clusters of studies with positive findings, including those relying on the measurement of SDM from the patients’ perspective and affective-cognitive outcomes, particularly in the context of surgical treatment decision making. We also identify important gaps in the literature, including the role of SDM in post-surgical treatment and end-of-life care decisions, and those specifying particular physician communication strategies when recommending cancer screening. Conclusions Transparent linkages between key conceptual domains and the influence of methodological approaches on observed patient outcomes are needed to advance our understanding of how and when patient-clinician communication influences patient outcomes. The proposed conceptual model and classification framework can be used to facilitate the translation of empirical evidence into practice and to identify critical gaps in knowledge regarding how and when patient-clinician communication impacts care outcomes in the context of cancer and health care more broadly.

Background Cancer survivors are living longer, prompting greater focus on managing cancer as a chronic condition. Shared care between primary care providers (PCPs) and cancer specialists, involving explicit partnership in how care is communicated, could ensure effective transitions between services. However, little is known about cancer patients' and survivors' preferences regarding shared care. Objective To explore Australian cancer survivors' views on shared care: what cancer survivors need from shared care; enablers and barriers to advancing shared care; and what successful shared care looks like. Setting and Participants Community forum held in Adelaide, Australia, in 2015 with 21 participants: 11 cancer survivors, 2 family caregivers, and 8 clinicians and researchers (members of PC4-Primary Care Collaborative Cancer Clinical Trials Group). Intervention Qualitative data from group discussion of the objectives. Results Participants stressed that successful shared care required patients being at the centre, ensuring accurate communication, ownership, and access to their medical records. PCPs were perceived to lack skills and confidence to lead complex cancer care. Patients expressed burden in being responsible for navigating information sharing and communication processes between health professionals and services. Effective shared care should include: shared electronic health records, key individuals as care coordinators; case conferences; shared decision making; preparing patients for self-management; building general practitioners' skills; and measuring outcomes. Discussion and Conclusions There was clear support for shared care but a lack of good examples to help guide it for this population. Recognizing cancer as a chronic condition requires a shift in how care is provided to these patients.

Context Engaging patients in shared decision making involves patient knowledge of treatment options and physician elicitation of patient preferences. Objective Our aim was to explore patient and physician perceptions of shared decision making in clinical encounters for cancer care. Design Patients and physicians were asked open-ended questions regarding their perceptions of shared decision making throughout their cancer care. Transcripts of interviews were coded and analysed for shared decision-making themes. Setting and participants At an academic medical centre, 20 cancer patients with a range of cancer diagnoses, stages of cancer and time from diagnosis, and eight physicians involved in cancer care were individually interviewed. Discussion and conclusions Most physicians reported providing patients with written information. However, most patients reported that written information was too detailed and felt that the physicians did not assess the level of information they wished to receive. Most patients wanted to play an active role in the treatment decision, but also wanted the physician's recommendation, such as what their physician would choose for him/herself or a family member in a similar situation. While physicians stated that they incorporated patient autonomy in decision making, most provided data without making treatment recommendations in the format preferred by most patients. We identified several communication gaps in cancer care. While patients want to be involved in the decision-making process, they also want physicians to provide evidence-based recommendations in the context of their individual preferences. However, physicians often are reluctant to provide a recommendation that will bias the patient.

Background Advance care planning (ACP) is a process of reflection on and communication of a person's future health-care preferences. Evidence suggests visible minorities engage less in ACP. The South Asian ethnic group is the largest visible minority group in Canada, and information is needed to understand how ACP is perceived and how best to approach ACP within this diverse community. Objective To explore perspectives of South Asian community members towards ACP. Design Peer-to-peer inquiry. South Asian community members who graduated from the Patient and Community Engagement Research programme (PaCER) at the University of Calgary utilized the PaCER method (SET, COLLECT and REFLECT) to conduct a focus group, family interviews and a community forum. Setting and participants Fifty-seven community-dwelling men and women (22-86 years) who self-identified with the South Asian community in Calgary, Alberta, Canada. Results The concept of ACP was mostly foreign to this community and was often associated with other end-of-life issues such as organ donation and estate planning. Cultural aspects (e.g. trust in shared family decision making and taboos related to discussing death), religious beliefs (e.g. fatalism) and immigration challenges (e.g. essential priorities) emerged as barriers to participation in ACP. However, participants were eager to learn about ACP and recommended several engagement strategies (e.g. disseminate information through religious institutions and community centres, include families in ACP discussions, encourage family physicians to initiate discussions and translate materials). Conclusions Use of a patient engagement research model proved highly successful in understanding South Asian community members' participation in ACP.

Background The National Academy of Medicine recommends that cancer patients be knowledgeable of their prognosis to enable them to make informed treatment decisions, but research suggests few patients receive this information. Objective This qualitative study describes oncologists’ language during discussions of prognosis and treatment goals in clinical interactions with African American patients diagnosed with cancer. Design We analysed transcripts from video recordings of clinical interactions between patients with Stage III or IV cancer (n=26) and their oncologists (n=9). In-depth discourse analysis was conducted to describe and interpret oncologists’ communication behaviours and common linguistic features in the interactions. Setting and participants Data were from a larger study of patient-provider communication between African Americans and oncologists at two cancer hospitals in Detroit. Results Prognosis was discussed in 73.1% (n=19) of the interactions; treatment goals were discussed in 92.3% (n=24). However, analysis revealed that oncologists’ description of prognosis was vague (e.g. “prognosis is a bit worse in your case”) and rarely included a survival estimate. Oncologists often used ambiguous terminology, including euphemisms and jargon, and emphasized uncertainty (e.g. “lesions are suspicious for the disease”). Conversation about prognosis was frequently brief, moving quickly to the urgency and details of treatment. Discussion This study demonstrates how oncologists’ language may obscure discussion of prognosis and treatment goals. The identified behaviours may lead to missed opportunities in eliciting and discussing patients’ knowledge about and preferences for their care. Patient-, provider- and system-oriented interventions are needed to improve clinical communication, especially among minority patients with advanced cancer.

Source at https://doi.org/10.1111/hex.12522. Accepted manuscript version, licensed CC BY-NC-ND 4.0. Objective: Patients making treatment decisions require understandable evidence‐based information. However, evidence on graphical presentation of benefits and side‐effects of medical treatments is not conclusive. The study evaluated a new space‐saving format, CLARIFIG (clarifying risk figures), aiming to facilitate accuracy of comprehension. Methods: CLARIFIG displays groups of patients with and without treatment benefits as coloured sectors of a proportional bar graph representing in total 100 patients. Supplementary icons indicate the corresponding group's actual condition. The study used an application showing effects of immunotherapy intended to slow disease progression in multiple sclerosis (MS). In a four‐arm web‐based randomized controlled trial, CLARIFIG was compared to the reference standard, multifigure pictographs (MFP), regarding comprehension (primary outcome) and processing time. Both formats were presented as static and animated versions. People with MS were recruited through the website of the German MS society. Results: Six hundred and eighty‐two patients were randomized and analysed for the primary end point. There were no differences in comprehension rates (MFPstatic=46%, CLARIFIGstatic=44%; P=.59; MFPanimated=23%, CLARIFIGanimated=30%; P=.134). Processing time for CLARIFIG was shorter only in the animated version (MFPstatic=162 seconds, CLARIFIGstatic=155 seconds; P=.653; MFPanimated=286 seconds, CLARIFIGanimated=189 seconds; P≤.001). However, both animated versions caused more wrong answers and longer processing time than static presentation (MFPstatic vs animated: P≤.001/.001, CLARIFIGstatic vs animated: P=.027/.017). Conclusion: Comprehension of the new format is comparable to MFP. CLARIFIG has the potential to simplify presentation in more complex contexts such as comparison of several treatment options in patient decision aids, but further studies are needed.

Background Health communication research and guidelines often recommend that medical terminology be avoided when communicating with patients due to their limited understanding of medical terms. However, growing numbers of e-patients use the Internet to equip themselves with specialized biomedical knowledge that is couched in medical terms, which they then share on participatory media, such as online patient forums. Objective Given possible discrepancies between preconceptions about the kind of language that patients can understand and the terms they may actually know and use, the purpose of this paper was to investigate medical terminology used by patients in online patient forums. Design Using data from online patient–patient communication where patients communicate with each other without expert moderation or intervention, we coded two data samples from two online patient forums dedicated to thyroid issues. Results Previous definitions of medical terms (dichotomized into technical and semi-technical) proved too rudimentary to encapsulate the types of medical terms the patients used. Therefore, using an inductive approach, we developed an analytical framework consisting of five categories of medical terms: dictionary-defined medical terms, co-text-defined medical terms, medical initialisms, medication brand names and colloquial technical terms. The patients in our data set used many medical terms from all of these categories. Discussion and conclusions Our findings suggest the value of a situated, condition-specific approach to health literacy that recognizes the vertical kind of knowledge that patients with chronic diseases may have. We make cautious recommendations for clinical practice, arguing for an adaptive approach to medical terminology use with patients.

Background: Personalized genomic risk information has the potential to motivate behaviour change and promote population health, but the success of this will depend upon effective risk communication strategies. Objective: To determine preferences for different graphical and written risk communication formats, and the delivery of genomic risk information including the mode of communication and the role of health professionals. Design: Focus groups, transcribed and analysed thematically. Participants Thirty-four participants from the public. Methods: Participants were provided with, and invited to discuss, a hypothetical scenario giving an individual’s personalized genomic risk of melanoma displayed in several graphical formats. Results: Participants preferred risk formats that were familiar and easy to understand, such as a ‘double pie chart’ and ‘100 person diagram’ (pictograph). The 100 person diagram was considered persuasive because it humanized and personalized the risk information. People described the pie chart format as resembling bank data and food (such as cake and pizza). Participants thought that email, web-based platforms and postal mail were viable options for communicating genomic risk information. However, they felt that it was important that a health professional (either a genetic counsellor or ‘informed’ general practitioner) be available for discussion at the time of receiving the risk information, to minimize potential negative emotional responses and misunderstanding. Face-to-face or telephone delivery was preferred for delivery of high-risk results. Conclusions: These public preferences for communication strategies for genomic risk information will help to guide translation of genome- based knowledge into improved population health. This study was funded by a Sydney Catalyst Pilot and Seed Funding grant. AE Cust is supported by a NHMRC Career Development Fellowship (APP1063593) and a Cancer Institute NSW Early Career Fellowship (10ECF206).

BackgroundDespite the recognized importance of end-of-life (EOL) communication between patients and physicians, the extent and quality of such communication is lacking.ObjectiveWe sought to understand patient perspectives on physician behaviours during EOL communication.DesignIn this mixed methods study, we conducted quantitative and qualitative strands and then merged data sets during a mixed methods analysis phase. In the quantitative strand, we used the quality of communication tool (QOC) to measure physician behaviours that predict global rating of satisfaction in EOL communication skills, while in the qualitative strand we conducted semi-structured interviews. During the mixed methods analysis, we compared and contrasted qualitative and quantitative data.Setting and ParticipantsSeriously ill inpatients at three tertiary care hospitals in Canada.ResultsWe found convergence between qualitative and quantitative strands: patients desire candid information from their physician and a sense of familiarity. The quantitative results (n = 132) suggest a paucity of certain EOL communication behaviours in this seriously ill population with a limited prognosis. The qualitative findings (n = 16) suggest that at times, physicians did not engage in EOL communication despite patient readiness, while sometimes this may represent an appropriate deferral after assessment of a patient's lack of readiness.ConclusionsAvoidance of certain EOL topics may not always be a failure if it is a result of an assessment of lack of patient readiness. This has implications for future tool development: a measure could be built in to assess whether physician behaviours align with patient readiness.

Background In western societies, a shared decision-making model for doctor–patient relationships calling for open and collaborative communication is recommended. Research focuses mainly on the doctor's communication patterns, while research on patient communication patterns is rare. The purpose of this study was to develop a tool for evaluating patient's communication patterns – the Patient Communication Pattern Scale (PCPS). Methods Interviews based on structured questionnaires were conducted with 251 cancer patients. In addition to the 14-item PCPS, the questionnaire included questions regarding education, religiosity and desirability of control in general and over one's own health in particular, for validating the scale. Results The PCPS was found to be a valid and reliable tool for evaluating patients' communication patterns. Confirmatory factor analysis supported the PCPS designed structure of five facets: (1) Information, (2) Clarification, (3) Initiation, (4) Preferences and (5) Emotions. Conclusion The PCPS is a reliable scale for evaluating patient communication patterns. The use of this scale can assist in promoting related research and in developing interventions for enhancing open and collaborative doctor–patient communication.

Background Although shared decision making (SDM) is the preferred model of making complex treatment decisions with patients, patients' and doctors' attitudes towards SDM for advance care planning are unknown. Objective We sought to: (i) gain general insights into the current practice of SDM and attitudes about patient involvement, and (ii) gain specific insights into experience with, and attitudes about, SDM for advance care planning. Design Qualitative analysis of face-to-face semi-structured interviews. Setting and participants Patients with chronic lung disease and their doctors at a New York City public hospital. Results Although patients described participation in decision making, many deferred the final decision to their doctors. Doctors indicated a preference for SDM but expressed barriers including perceived lack of patient understanding and lack of patient empowerment. With regard to end-of-life discussions, patients were generally open to having these discussions with their doctors, although their openness sometimes depended on the circumstance (i.e. end-of-life discussions may be more acceptable to patients for whom the chance of dying is high). Doctors reported engaging in end-of-life treatment decisions with their patients, although expressed the need for conversations to take place earlier, in advance of acute illness, and identified a lack of prognostic estimates as one barrier to engaging in this discussion. Conclusions Doctors should explore their patients' attitudes regarding end-of-life discussions and preferences for decision-making styles. There is a need for tools such as decision aids which can empower patients to participate in decision making and can support doctors with prognostic estimates pertinent to individual patients.

Background Patient-centred care has received considerable attention in the last few decades, but the patients’ perspective remains underexposed. This study reports on an in-depth evaluation of patients’ experiences and preferences at an otorhinolaryngology outpatient department. Methods Qualitative research was conducted on patients’ experiences and preferences at an otorhinolaryngology outpatient department in an academic hospital. The study comprised two phases. First, semi-structured interviews were held with 22 patients. Second, results from the interviews were verified and deepened in a focus group (N = 7). Results Overall, experience with patient-centred care was positive at the outpatient department. Three of the six dimensions of patient-centred care predominated in the interviews and the focus group: information, communication and education; coordination and integration of care; and respect for patients’ values, preferences and expressed needs. The negative experiences were mostly in these dimensions. The dimensions physical comfort and involvement of family and friends were of lesser significance. Opinion on emotional support – relieving fear and anxiety differed as to whether this was the responsibility of the doctor or the patient. Conclusion Qualitative research provided a deeper understanding of patients’ experiences and preferences at an otorhinolaryngology outpatient department. Such an in-depth evaluation can be useful in the transition towards patient-centred care.

Background It is necessary to raise a positive attitude towards cancer information to improve disease prevention and control. Objective To identify social factors, health characteristics and cancer-related perceptions and knowledge associated with a positive attitude towards cancer information. Design We ran multivariate logistic regression models to analyse population-based data from OncoBarometro-2010, a Spanish representative survey on perceptions and knowledge, related to cancer, conducted among 7938 people aged 18 years or more. Measurement Attitudes towards cancer information. A positive attitude includes feeling motivated to keep informed, to have screening tests or to change lifestyle. A negative attitude includes feeling indifference, concern, frustration or fear. Results 38.3% of the studied population reported having received information related to cancer (within the last 6 months). Among those, 31.5% expressed a negative attitude towards cancer information. People more likely to have a positive attitude towards cancer information (reference category: negative attitude) were people aged 35–74 (ref: aged 18–34) (P

Background Social media is an increasingly dominant platform for communication, especially among adolescents. Statements from professional bodies and a growing body of empirical evidence support a role for social media in improving provider–patient interactions. In psychiatry, particular concerns exist about the suitability of this style of communication. Very limited data are available exploring how patients would like to incorporate social media into their communication with their psychiatric providers. Methods We conducted a qualitative study with 20 adolescents attending the Yale Psychiatric Hospital Intensive Outpatient Programme. Interviews were analysed using inductive thematic analysis. Results Participants highlighted how social media could allow for constant access to a mental health provider, provide a less anxiety-provoking mode of communication, and allow for them to be monitored in a more on-going fashion. However, participants also identified many potential risks associated with these applications, including the potential for anxiety if a provider was not able to respond immediately, and a sense that online interactions would be less rich overall. Discussion Our findings suggest that adolescents are open to the idea of communicating with mental health providers over social media and are able to describe a number of instances where this could be of value. The risks participants described, as well as concerns raised by existing literature, indicate the need for further work and protocol development in order for social media to be a feasible tool for communication between providers and adolescents with psychiatric illness.

Background In patient-centred care, professionals should recognize their patient's needs and adapt their communication accordingly. Studies into patients' communication needs suggest priorities vary depending on sociodemographic characteristics, and type and severity of the complaints. However, evidence lacks on priorities in the communication needs of adolescents in psychosocial care and their parents.Objective To assess adolescents' and parents' importance ratings concerning affective communication, information provision, shared decision-making, interprofessional communication and the degree to which client and care characteristics determine these.Methods Adolescents aged 12-18 (n = 403) and one of their parents (n = 403) rated the importance of communication before the psychosocial care process started. Multivariable logistic regression analysis was applied to determine which characteristics were associated with the 25% lowest importance ratings for communication aspects.Results Adolescents and parents considered affective communication to be the most important, with shared decision-making the least important. For adolescents, lower importance ratings were associated with dissatisfaction with prior care (OR 1.8), negative expectations (ORs 1.9-2.4), emotional problems (ORs 0.2-0.5) and low prosocial behaviour skills (ORs 2.0). For parents, low education (ORs 1.7-1.8), negative expectations (OR 0.4), adolescent's hyperactivity/inattention (ORs 0.4-0.5) and low prosocial behaviour skills (ORs 1.8-2.6) determined lower importance ratings.Conclusions Affective communication has highest priority for adolescents and their parents. Client and care characteristics are associated with client priorities in communication. Being attentive to clients' educational level, previous care experiences, current expectations and specific problem types might help professionals to adapt better to their clients' communication needs.