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Contains fulltext : 154033.pdf (Publisher’s version ) (Open Access) BACKGROUND: A person-centred approach in the context of health services delivery implies a biopsychosocial model focusing on all factors that influence the person's health and functioning. Those wishing to monitor change should consider this perspective when they develop and use guidelines to stimulate active consideration of the person's needs, preferences and participation in goal setting, intervention selection and the use of appropriate outcome measures. OBJECTIVE: To develop a position paper that promotes a person-centred approach in guideline development and implementation. DESIGN, SETTING AND PARTICIPANTS: We used three narrative discussion formats to collect data for achieving consensus: a nominal group technique for the Allied Health Steering Group, an Internet discussion board and a workshop at the annual G-I-N conference. We analysed the data for relevant themes to draft recommendations. RESULTS: We built the position paper on the values of the biopsychosocial model. Four key themes for enhancing a person-centred approach in clinical guidelines emerged: (i) use a joint definition of health-related quality of life as an essential component of intervention goals, (ii) incorporate the International Classification of Functioning, Disability and Health (ICF) as a framework for considering all domains related to health, (iii) adopt a shared decision-making method, and (iv) incorporate patient-reported health outcome measures. The position statement includes 14 recommendations for guideline developers, implementers and users. CONCLUSION: This position paper describes essential elements for incorporating a person-centred approach in clinical guidelines. The consensus process provided information about barriers and facilitators that might help us develop strategies for implementing person-centred care.

Traditionally genetic counselling has promoted a non-directive approach to patients' decision-making but the feasibility of this has been questioned. Unlike most branches of medicine, which are shifting away from a paternalistic model, genetic counselling is approaching shared decision-making from a different perspective. There are certain features of genetic counselling and genetic testing which may complicate the drive towards shared decision-making and informed choice: 1. Genetic test results can have broader implications than non-genetic test results. 2. Genetic test results may be perceived by the patient differently to non-genetic test results. 3. Carrier status for autosomal recessive conditions may be difficult for patients to conceptualize. 4. Decisions in genetic counselling are often multiple and sequential. 5. Most information in genetic counselling is based on probabilities and uncertainties. Each of these features is discussed in relation to achieving shared decision-making in genetic testing and the implications for genetic counsellors are described. The points raised, however, have broader implications for medicine as several of the features, although central to genetic testing, are not entirely unique. Lessons learnt from genetic testing and genetic counselling in achieving shared decision-making could help develop methods of promoting informed choice in other medical arenas such as cancer screening.

This paper explores the methodological aspects of a user‐led study investigating mental health service user experiences of targeted violence and abuse (often called 'hate crime'). 'Keeping Control' was a 16‐month qualitative study, undertaken in the context of adult safeguarding reforms in England. By collecting data on service user concepts and experiences, the research sought to address a gap in research and practice knowledge relating to targeted violence, abuse and hostility against people with mental health problems. In this paper, we discuss the significance of the design and methodology used for this study, with a particular focus on the interviews with service users. The research was both user‐led and carried out in collaboration with practitioners and academics, a form of research co‐production. Our aim is to inform researchers, practitioners and policymakers about the value of user leadership in co‐productive research with practitioners, particularly for a highly sensitive and potentially distressing topic.

Background Despite policies and programmes aimed at housing people who are homeless, there are still people who live and sleep rough. This project used the skills and knowledge of people in this situation to identify a strategy to mitigate some of the risks. Objective To describe the development and conduct of a co-design project involving people who are homeless. Setting/group members A Working Group of 11 was formed following a careful recruitment process from people who had volunteered after consultation by the project team. The co-design approach was guided by a set of principles. Methods Eight members of the Working Group were interviewed by an external researcher (RM). The approach was primarily deductive, with the principles adopted by the project team used as a framework for data collection and analysis. The co-design process was captured by the project leaders (BK, PC) supplemented with documentation review and team discussions. Results The group met weekly for 12 weeks, with 8-10 members present on average. They reviewed information from the survey, contributed ideas for solutions and ultimately decided to provide information via print, a website and an event. Important factors in on-going involvement were carefully selecting group members and making participation rewarding for them. Discussion/conclusions Vulnerable people such as those experiencing homelessness can be excluded from decision-making processes affecting them, as they can be perceived as hard to reach and unable to make a meaningful contribution. This project demonstrated that a carefully managed project, with sufficient resources and commitment, it was possible to involve people who are homeless and maintain involvement over an extended time period. Public contribution The Working Group reviewed survey findings and developed an intervention to minimize the health, social and legal harms of sleeping rough. Several members reviewe this paper.

Background & Objective Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results Participants’ needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition.

Background Patient satisfaction has been seen as a key criterion when evaluating hospitals and is one of the main focuses of the current health‐care reform in China. This paper aimed to explore patient‐ and hospital‐level factors associated with inpatient satisfaction, which can provide policy implications for the evaluation and development of a patient‐oriented health‐care system. Methods The paper analyses data from the 2017 China National Patient Survey which includes 20 300 inpatients from 131 tertiary hospitals across 31 provinces. Descriptive analysis and multivariable logistic regressions are conducted to identify key factors related to satisfaction. Results Patient sociodemographic characteristics, including gender, age, income and insurance type, are found to be strongly associated with their satisfaction of inpatient experience. In terms of institutional characteristics, hospital type, size, staffing and financial performance are also significantly correlated with inpatient satisfaction. Patients are more satisfied with specialist hospitals and large hospitals measured by the number of beds and surgeries. Hospitals with higher nurse‐to‐bed ratio also receive more satisfaction. The financial performance of hospitals, however, is negatively associated with satisfaction. Conclusion Patient satisfaction contains unique information on service quality and thus should be incorporated into the matrix of hospital evaluation. Meanwhile, differences in patient composition must be adjusted to make fair comparisons across hospitals. Moreover, future reform needs to put greater efforts in the design of comprehensive public insurance scheme, efficient hospital structure and an overall well‐functioning health‐care delivery system in order to better serve patients in China.

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 People with severe mental illness (SMI) often have poorer physical health than the general population. A coproduced physical activity intervention to improve physical activity for people with SMI in Northern Ireland was evaluated by co‐researchers (researchers with lived experience of SMI) and academic researchers using a new approach to participatory data analysis called participatory theme elicitation (PTE). Objective Co‐researchers and academic researchers analysed the data from the pilot study using PTE. This paper aimed to compare these analyses to validate the findings of the study and explore the validity of the PTE method in the context of the evaluation of a physical activity intervention for individuals with SMI. Results There was alignment and congruence of some themes across groups. Important differences in the analyses across groups included the use of language, with the co‐researchers employing less academic and clinical language, and structure of themes generated, with the academic researchers including subthemes under some umbrella themes. Conclusions The comparison of analyses supports the validity of the PTE approach, which is a meaningful way of involving people with lived experience in research. PTE addresses the power imbalances that are often present in the analysis process and was found to be acceptable by co‐researchers and academic researchers alike.

Background Dementia outcomes include memory loss, language impairment, reduced quality of life and personality changes. Research suggests that outcomes selected for dementia clinical trials might not be the most important to people affected. Objective One of the goals of the ‘Real world Outcomes across the Alzheimer's Disease spectrum for better care: Multi‐modal data Access Platform’ (ROADMAP) project was to identify important outcomes from the perspective of people with dementia and their caregivers. We review how ROADMAP's Public Involvement shaped the programme, impacted the research process and gave voice to people affected by dementia. Design The European Working Group of People with Dementia (EWGPWD) were invited to participate. In‐person consultations were held with people with dementia and caregivers, with advance information provided on ROADMAP activities. Constructive criticism of survey content, layout and accessibility was sought, as were views and perspectives on terminology and key concepts around disease progression. Results The working group provided significant improvements to survey accessibility and acceptability. They promoted better understanding of concepts around disease progression and how researchers might approach measuring and interpreting findings. They effectively expressed difficult concepts through real‐world examples. Conclusions The role of the EWGPWD in ROADMAP was crucial, and its impact was highly influential. Involvement from the design stage helped shape the ethos of the programme and ultimately its meaningfulness. Public contribution People with dementia and their carers were involved through structured consultations and invited to provide feedback on project materials, methods and insight into terminology and relevant concepts.

Background: Knowledge is lacking about how to increase uptake among people with type 2 diabetes (T2D) invited to preventive initiatives like cardiovascular screening. Aim: To explore how to improve participation of people with T2D in cardiovascular screening using patient and public involvement (PPI). Methods: Patient and public involvement was included in a qualitative research design. From April to October 2019, we invited 40- to 60-year-old people with T2D (n = 17) to individual consultative meetings, using an interviewing approach. Before the interviews, participants were asked to read a proposed invitation letter to be used in a cardiovascular screening programme. Inductive content analysis was undertaken. Results: Participants considered cardiovascular screening important and beneficial from both a personal and social perspective. We found that the relational interaction between the person with T2D and the health-care professional was key to participation and that nudging captured through the design of the screening programme and the wording of the invitation letter was requested. Conclusion: In preventive initiatives perceived as meaningful by the invitee, a focus on recruitment is crucial to facilitate participation. This study contributed with knowledge about how to promote participation by involving health-care professionals in recruitment initiatives and through nudging. This knowledge may assist researchers, policymakers and ethicists' understanding and assessment of the ethical appropriateness and public acceptability of nudging in cardiovascular screening. Patient or public contribution: By consulting 17 people with T2D, we are now in a position to suggest how a screening initiative should be altered because tools to improve uptake have been identified.

Background Patient engagement (PE) in health‐care planning and improvement is a growing practice. We lack evidence‐based guidance for PE, particularly in hospital settings. This study explored how to optimize PE in hospitals. Methods This study was based on qualitative interviews with individuals in various roles at hospitals with high PE capacity. We asked how patients were engaged, rationale for approaches chosen and solutions for key challenges. We identified themes using content analysis. Results Participants included 40 patient/family advisors, PE managers, clinicians and executives from 9 hospitals (2

Background Multiple sclerosis (MS) is an inflammatory demyelinating disease with no known cure. Numerous diets are promoted to reduce symptoms or even cure MS, despite insufficient evidence for any therapeutic diet. There are few qualitative studies exploring the experiences of people with MS in relation to diet, and no use of theory to explain the findings. Purpose To explore the experiences of adults with MS when navigating dietary advice, their attitudes when making dietary decisions, and their needs regarding dietary resources and education. Methods In this qualitative study, we conducted six focus groups with people with MS (n = 33 plus one spouse without MS). Groups were audio-recorded and transcribed verbatim. Primary analysis used a general inductive approach with thematic analysis. Secondary analysis aligned themes with the constructs of the self-determination theory. Results Six themes emerged: (a) confusion about where to seek dietary advice; (b) scepticism towards national dietary guidelines; (c) personalized approaches to dietary change; (d) barriers to dietary changes; (e) judging if dietary changes work; and (f) wanting dietary guidelines for MS. Conclusion People with MS are highly motivated to make dietary changes and improve their health. The self-determination theory explained why people with MS make dietary modifications, and the varying levels of motivation. MS-specific dietary resources and nutrition education need to incorporate ways to increase autonomous forms of motivation. Future dietary intervention studies could use the self-determination theory as a framework to improve long-term adherence to healthier diets.

Objective: To understand how current funding expectations that applied health research is undertaken in partnership with research institutions, health service providers and other stakeholders may impact on patient and public involvement (PPI). Background: While there is considerable research on the potential impact of PPI in health research, the processes of embedding PPI in research teams remain understudied. We draw on anthropological research of meetings as sites of production and reproduction of institutional cultures and external contexts to investigate how these functions of meetings may affect the potential contributions of patients, carers and the public in research. Methods: We present an ethnography of meetings that draws from a larger set of case studies of PPI in applied health research settings. The study draws on ethnographic observations, interviews with team members, analysis of documents, and a presentation of preliminary findings through which feedback from informants was gathered. Results: We identified four means by which the oversight meetings regulated research and constrained the possibilities for PPI: a logic of ‘deliverables’ and imagined interlocutors, the performance of inclusion, positioning PPI in an ‘elsewhere’ of research, and the use of meetings to embed apprenticeship for junior researchers. Conclusions: PPI is essentially out of sync from the institutional logic of ‘deliverables’ constituting research partnerships. Embedding PPI in research requires challenging this logic.

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.

Latinos in the United States represent a disproportionate burden of illness and disease and face barriers to accessing health care and related resources. Culturally tailored, evidence‐based interventions hold promise in addressing many of these challenges. Yet, ensuring patient voice is vital in the successful development and implementation of such interventions. Thus, this paper examines the application of analytic hierarchy process (AHP) to inform the augmentation and implementation of an evidence‐based chronic disease self‐management programme for underserved Latinos living with both minor depression and chronic illness. The process of AHP allows for direct input from the individuals that would utilize such a programme, including afflicted individuals, their family members and the health educators/promotores that would be responsible for implementation. Specifically, 45 participants, including 15 individuals with chronic disease, 15 family members/caregivers and 15 promotores, partook in the Stakeholder Values Questionnaire, which elicited preferences and values regarding major goals, processes and content for the intervention. AHP was employed to analyse pairwise comparison ratings and to determine differences and similarities across stakeholder groups. This analytical technique allowed for the adaptation of the EBI to stakeholders' specific priorities and preferences and facilitated complex decision‐making. Findings not only shed light on similarities and differences between stakeholder groups, but also the magnitude of these priorities and preferences and allowed the intervention to be driven by the participants, themselves. Applying AHP was a unique opportunity to optimize the decision‐making process to inform cultural adaptation of an EBI while considering multiple viewpoints systematically.

Background Adherence to ADHD medication is a complex phenomenon as the decision to adhere is influenced by a range of factors. To design tailored interventions to promote adherence, it is important to understand the factors that influence adherence in the context of its three phases: initiation, implementation and discontinuation. Objective The objective of this study was to explore the phase‐specific factors that influence adherence to medication in adults who have a diagnosis of ADHD. Methods Three focus groups (FGs) were conducted with twenty adults with ADHD in different metropolitan areas of Sydney, Australia. FGs were transcribed verbatim and thematically analysed. Results Participants’ decision to initiate medication (the initiation phase) was influenced by their perceived needs (desire to improve academic and social functioning) and concerns (fear of side‐effects) about medication following a similar process as defined by the Necessity‐Concerns Framework (NCF). The balance between benefits of medication (needs) and side‐effects (concerns) continued to determine participants’ daily medication‐taking (the implementation phase) and persistence (or discontinuation) with their medication. Forgetfulness and stigma were reported as concerns negatively impacting the implementation phase, while medication cost and dependence influenced the discontinuation phase of adherence. Conclusions Adults’ decision to initiate, continue or discontinue medication is influenced by a range of factors; some are unique to each phase while some are common across the phases. Participants balanced the needs for the medication against their concerns in determining whether to adhere to medication at each phase. It appears that the NCF has applicability when decision making about medication is explored at the three phases of adherence.

Background Patient activation describes the knowledge, skills and confidence in managing one's own health. Promoting patient activation is being prioritized to reduce costs and adverse outcomes such as cardiovascular disease (CVD). The increasing prevalence of chronic kidney disease (CKD) presents a need to understand the characteristics that influence patient activation and the effect on health outcomes. Design Cross‐sectional study. Setting and participants Patients with non‐dialysis CKD recruited from 14 sites (general nephrology and primary care) in England, UK. Outcome measures Patient activation was measured using the PAM‐13. Demographic and health‐related variables, self‐reported symptom burden, health‐related quality of life (HRQOL), socioeconomic status (SES), were assessed as determinants of patient activation. Major CVD risk factors included hypertension, dyslipidaemia, obesity and hyperkalaemia. Results 743 patients were included (eGFR: 32.3 (SD17.1) mL/min/1.73 m2, age 67.8 (SD13.9) years, 68% male). The mean PAM score was 55.1 (SD14.4)/100. Most patients (60%) had low activation. Those with low activation were older (P

Background: Hypertension is mainly managed in primary care. Shared decision making is widely recommended as an approach to treatment decision making. However, no studies have investigated; in detail, what happens during primary care consultations for hypertension.Aim: To understand patients’ and clinicians’ experience of shared decision making for hypertension in primary care, in order to propose how it might be better supported.Design: Longitudinal qualitative studySetting: Five general practices in south-west England.Method: Interviews with a purposive sample of patients with hypertension, and with the health-care practitioners they consulted, along with observations of clinical consultations, for up to 6 appointments. Interviews and consultations were audio-recorded and observational field notes taken. Data were analysed thematically.Results: Forty- six interviews and 18 consultations were observed, with 11 patients and nine health-care practitioners (five GPs, one pharmacist and three nurses). Little shared decision making was described by participants or observed. Often patients’ understanding of their hypertension was limited, and they were not aware there were treatment choices. Consultations provided few opportunities for patients and clinicians to reach a shared understanding of their treatment choices. Opportunities for patients to engage in choices were limited by structured consultations and the distribution of decisions across consultations.Conclusion: For shared decision making to be better supported, consultations need to provide opportunities for patients to learn about their condition, to understand that there are treatment choices, and to discuss these choices with clinicians.Patient or Public Contribution: A patient group contributed to the design of this study.

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.

Background Increased self-management is a suggested solution to the burden on health-care services of long-term conditions (LTCs). This requires effective sharing of knowledge between health-care professionals and patients, and is an underexplored area. Objective To understand how patients and health-care professionals (HCPs) share and utilize knowledge in the social context of health-care interactions within long-term condition management. Methods Thematic analysis of 93 hours of observations of health-care interactions and 33 semi-structured interviews involving patients, carers and HCPs. Results 3 themes were identified: normative social roles, differing professional roles and the value of knowledge. Knowledge sharing was a complex process heavily influenced by social and cultural norms within the health-care context. Not all knowledge was easily shared within routine health-care interactions. Discussion The social context in which health-care is practised influences what knowledge is shared and how this is achieved. It favours sharing of clinical knowledge from HCPs to patients and disadvantages patients in their ability to share their unique knowledge based on lived experience of illness. The opportunities for patients to be supported in their knowledge, skills and confidence within routine health-care interactions are limited. Conclusion Both patients and HCPs need support to recognize the characteristics of the social context of health care and their understandings of their roles within this in order for them to move beyond accepted behaviours to develop more effective partnership working. Patient or public contribution Patients were involved in initial design of the study, particularly ethics of ethnographic observation.

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 Community awareness of the harms of overdiagnosis remains low. Objective To evaluate community responses to a public health campaign designed for health service waiting rooms that focuses on the harms of unnecessary diagnostic imaging for low back pain. Methods We conducted two focus groups of 19 community members with or without low back pain in Sydney, Australia. This study formed the fourth and final stage of the development process of a public health campaign: (a) initial design, (b) expert review and revision, (c) online experiment and (d) community views & revision. We evaluated reactions to components of the campaign that included digital posters and an information leaflet using strong imagery and messaging about the risk of overdiagnosis. We conducted a qualitative thematic analysis to identify main themes. Results Community members reacted with surprise, initial mistrust, and occasionally anger towards imagery and messaging that suggested diagnostic imaging tests could be unnecessary and harmful. With further reflection and discussion, and after reading longer format information about overdiagnosis, the participants found some of the messages informative and useful. Participants appeared to gain a better understanding of the concept of overdiagnosis and the importance of not rushing to imaging. Conclusions Public health campaigns including posters and leaflets displayed in waiting rooms could raise awareness about overuse of diagnostic imaging and the harms of overdiagnosis more broadly. However, negative reactions are possible and must be managed carefully. Patient or public contribution We involved a community participation manager who provided advice on the focus group discussion guide, participant recruitment and manuscript presentation.

Background: Stakeholder involvement includes not just patients and public, but also those delivering treatment e.g. clinicians and students. Each stakeholder brings unique experiences to the process. The aim of this stakeholder exercise was to explore readability and understanding of the trial material for the future trial to be conducted by the authors: Biomechanical Effects of Manual Therapy – A Feasibility Study.\ud \ud Design: Volunteers from identified stakeholder groups were provided with trial material which included the information sheet, consent form, questionnaires and home management booklet. They provided feedback on content (readability, understanding) and style (font, layout). An additional document was provided with genres of pictures to choose the most appropriate style to be used in the booklet.\ud Readability formulas were used to calculate reading age before and after feedback to objectively measure ease of reading.\ud \ud Results: The public group provided a layperson’s perspective to clarify the information sheet for patients, whereas practitioner and intern groups indicated where information could be clarified. The reading age of all documentation decreased following feedback; however templated sections of the documentation did not. The majority (87%) of volunteers chose coloured classic cartoons for the booklet.\ud \ud Conclusion: This process highlighted the importance of involving different stakeholder groups in the development of research materials as each group made a unique contribution. Readability and understanding of the trial material were improved, feeding back into the consent process contributing towards fully informed consent.\ud \ud Patient or Public Contribution: Public helped develop materials for a future trial but not with manuscript preparation.

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.

© 2020 The Authors. Health Expectations published by John Wiley & Sons Ltd Background: Brain injury rehabilitation is an expensive and long-term endeavour. Very little published information or debate has underpinned policy for service delivery in Australia. Within the context of finite health budgets and the challenges associated with providing optimal care to persons with brain injuries, members of the public were asked ‘What considerations are important to include in a model of care of brain injury rehabilitation?’. Methods: Qualitative study using the Citizen Jury method of participatory research. Twelve adult jurors from the community and seven witnesses participated including a health services funding model expert, peak body representative with lived experience of brain injury, carer of a person with a brain injury, and brain injury rehabilitation specialists. Witnesses were cross-examined by jurors over two days. Results: Key themes related to the need for a model of rehabilitation to: be consumer-focused and supporting the retention of hope; be long-term; provide equitable access to services irrespective of funding source; be inclusive of family; provide advocacy; raise public awareness; and be delivered by experts in a suitable environment. A set of eight recommendations were made. Conclusion: Instigating the recommendations made requires careful consideration of the need for new models of care with flexible services; family involvement; recruitment and retention of highly skilled staff; and providing consumer-focused services that prepare individuals and their carers for the long term. Patient and public contribution: As jury members, the public deliberated information provided by expert witnesses (including a person with a head injury) and wrote the key recommendations.

Background Multimorbidity prevalence is increasing globally. People with multimorbidity have higher health care costs, which can create a financial burden. Objective To synthesize qualitative research exploring experience of financial burden for people with multimorbidity. Search strategy Six databases were searched in May 2019. A grey literature search and backward and forward citation checking were also conducted. Inclusion criteria Studies were included if they used a qualitative design, conducted primary data collection, included references to financial burden and had at least one community-dwelling adult participant with two or more chronic conditions. Data extraction and synthesis Screening and critical appraisal were conducted by two reviewers independently. One reviewer extracted data from the results section; this was checked by a second reviewer. GRADE-CERQual was used to summarize the certainty of the evidence. Data were analysed using thematic synthesis. Main results Forty-six studies from six continents were included. Four themes were generated: the high costs people with multimorbidity experience, the coping strategies they use to manage these costs, and the negative effect of both these on their well-being. Health insurance and government supports determine the manageability and level of costs experienced. Discussion Financial burden has a negative effect on people with multimorbidity. Continuity of care and an awareness of the impact of financial burden of multimorbidity amongst policymakers and health care providers may partially address the issue. Patient or public contribution Results were presented to a panel of people with multimorbidity to check whether the language and themes 'resonated' with their experiences.

Background Though growing numbers of peer support workers are employed in the UK National Health Service (NHS), conflicts persist between core values of peer support and values which exert power within these services. Objectives To explore what NHS mental health professionals value about the peer support worker role. Design Five professionals from different professions and mental health settings were interviewed twice. The first interviews explored their experiences of working with peers. Transcripts were analysed using discourse analysis and psychosocial theory. Second interviews allowed participants to respond to the analysis and influence subsequent analysis. Results Mental health professionals valued peers for the deeply empathic, relational approach they brought, based in their subjective experience. Peer work was also valued for the affect‐focused quality of this work, and the challenge peers pose to existing values in mental health services. The values of peer support troubled dominant ways of working based in forms of knowledge that favour objectivity and hence encountered challenges. Conclusions Peers fulfil the role of amplifying the status of diverse forms of knowledge, values and related ways of working that have become marginalized in NHS mental health services. It is important that peers are not seen as an isolated solution to the marginalization of these forms of knowledge and values, but that their way of working becomes reflected in other roles whilst evoking change throughout these services. Patient or Public Contribution Patient and Public Involvement groups were consulted both in the design and analysis stages of the study.

Background Health literacy, the ability to access, understand, evaluate and apply health information, was found to contribute to positive health outcomes, possibly via promoting healthy behaviours. However, the specific pathways linking different health literacy skills to health and well-being have remained unclear. Methods A cross-sectional survey with structural questionnaires was administered among 2236 adults in Hong Kong (mean age = 46.10 ± 19.05). Health literacy was measured by HLS-Asian-47. Participants' physical conditions and subjective well-being were predicted by health literacy and health behaviours with structural modelling path analysis. Results Health literacy in finding and understanding information showed a direct effect on enhancing physical health, while applying information capacity had an indirect positive effect via promoting health behaviours, which was moderated by sex. Only among women, this indirect effect predicting fewer physical symptoms and better well-being was significant. Conclusions Different health literacy dimensions showed distinct direct and indirect pathways in influencing health for men and women. Based on the findings, skill trainings should be developed to enhance both gender's abilities of finding and understanding health information, while the ability of applying health information should also be improved for modifying lifestyle and promoting health, particularly for women. Patient or public contribution Two thousand and two hundred thirty-six adults from different districts of Hong Kong participated in the study, and responded to questions on health literacy, behaviours and health status.

Background Engaging youth and family members as active partners in research and service design offers great promise in improving projects. In youth mental health, recent research has highlighted the value of youth and family engagement. However, research on the experience and impacts of engagement is sparse. Objective This study explores the project team's experience of youth and family engagement in the design and development of the YouthCan IMPACT randomized controlled trial and clinical service pathway design. Design Qualitative data collected using semi-structured interviews and a focus group as part of the YouthCan IMPACT clinical trial were analysed to understand the impacts of engagement. Twenty-eight team members were interviewed, including youth and family members. A qualitative content analysis was conducted, with a member checking process. Results Team members reported facilitators, barriers and impacts of youth and family engagement. Facilitators included a safe environment and strong procedures conducive to inclusion in co-design. Barriers included logistical, structural and institutional constraints. Overall, team members found youth and family engagement to be valuable and to positively impact the research and service design process. Discussion and conclusions Youth and family engagement played a critical role in research and clinical service pathway design. The team found that their involvement improved the quality of the research and service pathway through sustained and multifaceted engagement. Facilitators and barriers to engagement may serve to guide future engagement initiatives. Future research should evaluate the long-term impact of early engagement and further focus on family engagement. Patient/public contribution Youth and family members were engaged in the data analysis and interpretation process.

Background The Family Connections™ (FC) program is a 12‐week support and skill‐training program for caregivers of youth with mental health challenges. The intervention was originally developed with a focus on borderline personality disorder (BPD). It is important to understand the experiences of caregivers in such interventions, as well as its applicability beyond BPD, for the purposes of evaluation and ongoing program improvement. Objective To explore and analyse the experiences of caregivers of youth with diverse mental health challenges and who participated in FC. Design Semi‐structured interviews with thirteen FC‐participating caregivers of youth with mental health challenges. Results Thematic analysis uncovered three major themes regarding caregivers' experience with FC: (a) FC increased the caregivers' ability to manage their youth's mental health challenges; (b) participating in FC impacted their intra‐ and interpersonal spheres; and (c) improvements to the program were proposed. Following participation in FC, caregivers felt they learned a new approach to understanding themselves, their youth and mental health, and were better able to manage their youth's mental health challenges. Discussion and conclusion FC is a promising intervention for caregivers of youth with mental health challenges, beyond the traditional BPD focus. The intervention has the potential to provide broad‐based benefits for caregivers and should be considered for implementation and scale‐up across youth‐ and caregiver‐serving organizations. Potential areas of intervention flexibility and improvement are discussed. Patient/public contribution Caregivers were involved in the program development and facilitation of FC. A person with lived experience was involved with the analysis.

Background Despite intentions to increase user participation in the development of health services, the concept of participation and how it unfolds within studies with a participatory design has rarely been addressed. Objective The aim of this study was to describe how user participation manifests itself within a co-design process involving patients, significant others and health-care professionals, including potential enablers or barriers. Methods This study was conducted in the context of a co-design process of a new person-centred transition from a hospital to continued rehabilitation in the home involving three patients with stroke, one significant other and 11 professionals. Data were collected by observations during the workshops, semi-structured interviews and questionnaires. Results Four categories: 'Composition of individuals for an adaptive climate'; 'The balancing of roles and power'; 'Different perspectives as common ground for a shared understanding'; and 'Facilitating an unpredictable and ever-adaptive process', with all together nine subcategories, resulted from the analysis. Participation varied between individuals, groups and steps within the process, and on the topic of discussions and the motivation to contribute. Discussion/conclusion Participation is not something that is realized by only applying participatory design methodology. Participation manifests itself through the interaction of the participants and their skills to handle different perspectives, roles and assignments. Participation is enabled by individual, group and facilitating aspects. Co-design processes should allow for varying levels of participation among the participants and throughout the process. Patient or public contribution Patients, significant others and health-care professionals participated as co-designers of a care transition model between hospital and home.

Background Discussing patient preferences for cardio‐pulmonary resuscitation (CPR) is routine in hospital admission for older people. The way the conversation is conducted plays an important role for patient comprehension and the ethics of decision making. Objective The objective was to examine how CPR is explained in geriatric rehabilitation hospital admission interviews, focussing on circumstances in which physicians explain CPR and the content of these explanations. Method We recorded forty‐three physician‐patient admission interviews taking place in a hospital in French‐speaking Switzerland, during which CPR was discussed. Data were analysed in French with thematic and conversation analysis, and the extracts used for publication were translated into English. Results Mean patient age was 83.7 years; 53.5% were admitted for rehabilitation after surgery or traumatism. CPR was explained in 53.8% of the conversations. Most explanations were brief and concerned the technical procedures, mentioning only rarely potential outcome. With one exception, medical indication and prognosis of CPR did not feature in these explanations. Explanations occurred either before the patient's answer (as part of the question about CPR preferences) or after the patient's answer, generated by patients' indecision, misunderstanding and by the need to clarify answers. Discussion and conclusions The scarcity and simplicity of CPR explanations highlight a reluctance to have in‐depth discussions and reflect the assumption that CPR does not need explaining. Providing patients with accurate information about the outcomes and risks of CPR is incremental for reaching informed decisions and patient‐centred care. Patient contribution Patients were involved in the data collection stage of the study.

Background There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care. Method A Policy Café was co‐produced with people with dementia using a World Café methodology. A Carer's Assembly was co‐produced with caregivers of people with dementia using a citizen's assembly model. Results Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty‐eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy‐makers to inform their decision making. Discussion Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co‐production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy‐makers. Policy‐makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. Patient or public contribution People with dementia and carers were involved in study design, data analysis and presentation.

BackgroundCo‐production is predicated on equal power‐sharing and responsibility in research partnerships. However, relatively few accounts exist that explore the subjective experience of how co‐researchers achieve such equality, from the perspectives of public contributors and researchers.AimThis paper aims to provide a unique insight into the process of co‐production, by weaving personal reflections with principles to evaluate the impact arising from co‐produced knowledge. It is based upon participatory research that was initiated by a ‘lay’ person, on behalf of a community organization, seeking support for Somali families who are affected by autism. The paper explores the evolving partnerships that began with community theatre and qualitative research and leading to extensive dissemination and impact, all of which has been jointly owned and negotiated by the co‐researchers and community organizations.DiscussionInitially, this paper reflects on the process, drawing on principles defined for co‐production in health research and combining it with the co‐researcher's personal reflections of their experiences as insiders and outsiders, stepping in and out of each other's worlds. The value of reciprocity, flexibility and continuous reflection is illustrated. The latter part of the paper explores the impact of this co‐produced knowledge using a theoretical framework, to assess the specific impacts and its broader transformative potential. It demonstrates how (1) opportunities for all partners to be equitably involved to the maximum degree possible throughout the research process can affect social change and (2) co‐produced research can become a catalyst that is dynamic and complex, achieving multi‐layered impact.