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Background: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation‐STakeholder Engagement Model (I‐STEM) in the context of an international, large‐scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I‐STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. Methods: In‐depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet‐based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first‐ and third‐generation Grounded Theory, including constant comparative method. Results: We conducted 55 interviews and observed 19 implementation‐related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I‐STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. Conclusion: The I‐STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I‐STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. Patient or Public Contribution: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN‐Europe at all stages—from grant development to dissemination. GAMIAN‐Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN‐Europe was involved in pilot testing the ItFits‐toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits‐toolkit. Trial registration: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018. [ABSTRACT FROM AUTHOR]

Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

Background: Community‐based health interventions have been implemented as a key strategy for achieving improved health outcomes in Ghana. Effectiveness, however, largely depends on the successful implementation of patient–public engagement (PPE). Although several PPE studies have been conducted in Ghana, little research has been done to understand the specific role of PPE in the context of implementing community‐based health programmes. This paper, therefore, examines the extent of PPE implementation in three selected community‐based health programmes (Community‐based Health Planning and Service [CHPS], Community‐based Maternal and Child Health and Buruli Ulcer) to understand their specific effects on health outcomes. Methods: Three focus groups, involving 26 participants, were held in three districts of the Ashanti region of Ghana. Participants were mainly health service users involving community health committee members/volunteers, residents and health professionals. They were invited to participate based on their roles in the design and implementation of the programmes. Participants focused on each of Rifkin's spider‐gram components. Data were transcribed and analysed descriptively using NVIVO 12 Plus. Results: PPE implementation was found to be extensive across the three programmes in specific areas such as organisation and resource mobilisation. PPE was more restricted in relation to community needs assessment, leadership and management, particularly for the CHPS and Buruli Ulcer programmes. Conclusion: Findings suggest that benefits from community‐based health interventions are likely to be greater if PPE can be widely implemented across all dimensions of the spider‐gram framework. [ABSTRACT FROM AUTHOR]

Background: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective: We explored how researchers involve and engage seldom‐heard communities around big data research. Methods: This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results: The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion: The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement: Two public contributors are authors of the paper and they were involved in the study design, analysis and writing. [ABSTRACT FROM AUTHOR]

Background: Involving patients is a key premise of national and international policies on patient safety, which requires understanding how patients or carers want to be involved and developing resources to support this. This paper examines patients' and carers' views of being involved in patient safety in primary care and their views of potentially using a co‐designed patient safety guide for primary care (PSG‐PC) to foster both involvement and their safety. Methods: A qualitative study using semistructured face‐to‐face interviews with 18 patients and/or carers in primary care. Interviews were transcribed and analysis was conducted using an inductive thematic approach. Results: Overall participants expressed enthusiasm for the PSG‐PC as a tool to support patients and carers to be involved in patient safety in primary care. However, for some participants being involved in patient safety was seen as taking on the role of General Practitioner and had the potential to add an additional workload for patients. Participants' willingness or ability to be involved in patient safety was influenced by a range of factors including an invisible, often underacknowledged role of everyday safety for patients' interactions with primary care; the levels of involvement that patients wanted in their care and safety and the work of embedding the PSG‐PC for patients into their routine interactions with primary care. Participants identified components of the PSG‐PC that would be useful to them, in particular, if they had a responsibility for caring for a family member if they had more complex care or long‐term conditions. Conclusion: Involving patients and carers in patient safety needs a tailored and personalized approach that enables patients and carers to use resources like the PSG‐PC routinely and helps challenge assumptions about their willingness and ability to be involved in patient safety. Doing so would raise awareness of opportunities to be involved in safety in line with personal preference. Patient or Public Contribution: Patient and public involvement were central to the research study. This included working in partnership to develop the PSG‐PC with patients and carers and throughout our study including in the design of the study, recruiting participants, interpretation of findings. [ABSTRACT FROM AUTHOR]

Introduction: Despite digital health tools being popular for supporting self‐management of chronic diseases, little research has been undertaken on stroke. We developed and pilot tested, using a randomized controlled design, a multicomponent digital health programme, known as Inspiring Virtual Enabled Resources following Vascular Events (iVERVE), to improve self‐management after stroke. The 4‐week trial incorporated facilitated person‐centred goal setting, with those in the intervention group receiving electronic messages aligned to their goals, versus limited administrative messages for the control group. In this paper, we describe the participant experience of the various components involved with the iVERVE trial. Methods: Mixed method design: satisfaction surveys (control and intervention) and a focus group interview (purposively selected intervention participants). Experiences relating to goal setting and overall trial satisfaction were obtained from intervention and control participants, with feedback on the electronic message component from intervention participants. Inductive thematic analysis was used for interview data and open‐text responses, and closed questions were summarized descriptively. Triangulation of data allowed participants' perceptions to be explored in depth. Results: Overall, 27/54 trial participants completed the survey (13 intervention: 52%; 14 control: 48%); and 5/8 invited participants in the intervention group attended the focus group. Goal setting: The approach was considered comprehensive, with the involvement of health professionals in the process helpful in developing realistic, meaningful and person‐centred goals. Electronic messages (intervention): Messages were perceived as easy to understand (92%), and the frequency of receipt was considered appropriate (11/13 survey; 4/5 focus group). The content of messages was considered motivational (62%) and assisted participants to achieve their goals (77%). Some participants described the benefits of receiving messages as a 'reminder' to act. Overall trial satisfaction: Messages were acceptable for educating about stroke (77%). Having options for short message services or email to receive messages was considered important. Feedback on the length of the intervention related to specific goals, and benefits of receiving the programme earlier after stroke was expressed. Conclusion: The participant experience has indicated acceptance and utility of iVERVE. Feedback from this evaluation is invaluable to inform refinements to future Phase II and III trials, and wider research in the field. Patient or Public Contribution: Two consumer representatives sourced from the Stroke Foundation (Australia) actively contributed to the design of the iVERVE programme. In this study, participant experiences directly contributed to the further development of the iVERVE intervention and future trial design. [ABSTRACT FROM AUTHOR]

Background and context: Breastfeeding peer support is valued by women, but UK trials have not demonstrated efficacy. The ABA feasibility trial offered proactive peer support underpinned by behaviour change theory and an assets‐based approach to women having their first baby, regardless of feeding intention. This paper explores women's and infant feeding helpers' (IFHs) views of the different components of the ABA intervention. Setting and participants: Trained IFHs offered 50 women an antenatal meeting to discuss infant feeding and identify community assets in two English sites—one with a paid peer support service and the other volunteer‐led. Postnatally, daily contact was offered for the first 2 weeks, followed by less frequent contact until 5 months. Methods: Interviews with 21 women and focus groups/interviews with 13 IFHs were analysed using thematic and framework methods. Results: Five themes are reported highlighting that women talked positively about the antenatal meeting, mapping their network of support, receiving proactive contact from their IFH, keeping in touch using text messaging and access to local groups. The face‐to‐face antenatal visit facilitated regular text‐based communication both in pregnancy and in the early weeks after birth. Volunteer IFHs were supportive of and enthusiastic about the intervention, whereas some of the paid IFHs disliked some intervention components and struggled with the distances to travel to participants. Conclusions: This proactive community assets‐based approach with a woman‐centred focus was acceptable to women and IFHs and is a promising intervention warranting further research as to its effect on infant feeding outcomes. [ABSTRACT FROM AUTHOR]

Background: People with haemophilia A and inhibitors (PwHi) suffer more orthopaedic complications, bleeding and pain than those without inhibitors. The advent of emicizumab as a prophylactic treatment has led to a reduction in bleed frequency and a significant improvement in overall quality of life. No research to date has examined the nature of this improvement on treated individuals and their families. Aims: The Emi & Me study aims to capture the real‐life experience of using emicizumab for PwHi and their families. Methods: Participants were recruited through treatment centres, social media and by word of mouth. Each participant and a family member, if available, took part in a semistructured qualitative interview. All interviews were recorded, transcribed verbatim and analysed thematically. All elements of the study were reviewed by local statutory authorities and informed consent was sought from all participants. Results: Fifteen PwHi, mean age 27.2 years (range 8–63 years), most with a family member, participated in a single qualitative interview online (n = 13), by telephone (n = 1) or in person (n = 1). Mean time on emicizumab was 2.26 years (range 1–5 years). Six major themes emerged: bleeds; pain; treatment burden; control; freedom (for both PwHi and family members) and missed potential. Emicizumab prophylaxis has delivered significant improvements in the lives of the participants. Despite these improvements, some participants felt that their pre‐existing physical disabilities and the lack of physiotherapy provision had prevented them achieving similar improvements in their functional ability. Conclusion: This study shows that in reducing bleeds, pain and treatment burden, emicizumab had given PwHi greater control over their condition, allowing a sense of freedom they had not experienced with factor VIII or bypassing agent prophylaxis. However, for emicizumab to be truly effective, there is a need to ensure the continued availability and accessibility of robust multidisciplinary support services. Without this, it is unlikely that PwHi will realize the life‐changing potential offered either by emicizumab or any other novel treatment approach. Patient or Public Contribution: A patient participant (who did not wish to be included as an author of the paper) was involved in the design of the study protocol and interview guide. [ABSTRACT FROM AUTHOR]

Background: Critical care bed capacity per capita in Ireland is among the lowest in Europe. The COVID‐19 pandemic has put additional strain on an over‐stretched healthcare system. COVID‐19 community assessment hubs (CAHs) were established to prevent unnecessary admission to acute hospitals and to reduce infection spread. Objective: The aim of this study was to assess the effectiveness and acceptability of CAHs and identify how the service might be improved or adapted for possible future use. Design: This was a mixed methods study, incorporating co‐design with clinical stakeholders. Data collection was via an online survey and semistructured telephone interviews with staff and patients conducted between January and May 2021. Setting and participants: Thirty‐one patients completed the survey and nine were interviewed. Twenty interviews were conducted with staff. Results: The findings suggest that the CAH model was successful in providing a dedicated pathway for assessing patients with COVID‐19 symptoms, whilst mitigating the risk of infection. Patients were particularly positive about the timely, comprehensive and holistic care they received, as well as the accessibility of the clinics and the friendly attitudes of the staff. Staff welcomed the training and clinical protocols which contributed to their feelings of safety and competency in delivering care to this cohort of patients. They also highlighted the benefits of working in a multidisciplinary environment. Both staff and patients felt that the hubs could be repurposed for alternative use, including the treatment of chronic diseases. Discussion: This study describes staff and patients' experiences of these hubs. An unexpected outcome of this study is its demonstration of the true value of effective multidisciplinary working, not only for the staff who were deployed to this service but also for the patients in receipt of care in these hubs. Conclusion: This multidisciplinary patient‐centred service may provide a useful model for the delivery of other services currently delivered in hospital settings. Patient or Public Contribution: An earlier phase of this study involved interviews with COVID‐19‐positive patients on a remote monitoring programme. The data informed this phase. Several of the authors had worked in the CAHs and provided valuable input into the design of the staff and patient interviews. [ABSTRACT FROM AUTHOR]

Introduction: The adoption of remote healthcare methods has been accelerated by the COVID‐19 pandemic, but evidence suggests that some patients need additional support to engage remotely, potentially increasing health disparities if needs are not met. This study of COVID‐19 remote home monitoring services across England explores experiences of and engagement with the service across different patient groups. Methods: This was a mixed‐methods study with survey and interview data collected from 28 services across England between February and June 2021. Surveys were conducted with staff and patients and carers receiving the service. Interviews with staff service leads, patients and carers were conducted in 17 sites. Quantitative data were analysed using univariate and multivariate methods, and qualitative data were analysed using thematic analysis. Findings: Survey responses were received from 292 staff and 1069 patients and carers. Twenty‐three staff service leads, 59 patients and 3 carers were interviewed. Many service leads reported that they had considered inclusivity when adapting the service for their local population; strategies included widening the eligibility criteria, prioritising vulnerable groups and creating referral pathways. However, disparities were reported across patient groups in their experiences and engagement. Older patients reported the service to be less helpful (p = 0.004), were more likely to report a problem (p < 0.001) and had more difficulty in understanding information (p = 0.005). Health status (p = 0.004), ethnicity (p < 0.001), gender (p < 0.001) and employment (p = 0.007) were associated with differential engagement with monitoring, and minority ethnic groups reported more difficulty understanding service information (p = 0.001). Qualitative data found illness severity to be an important factor in the support required, and patients' living situation and social network affected whether they found the service reassuring. Conclusion: Addressing health disparities must be a key focus in the design and delivery of remote care. Services should be tailored to match the needs of their local population, encourage access through collaboration and referral pathways with other services and monitor their inclusiveness. Involving patients and staff in service design can illuminate the diversity of patients' needs and experiences of care. Patient or Public Contribution: The study team met with service user and public members of the BRACE PPI group and patient representatives from RSET in a series of workshops. Workshops informed study design, data collection tools, data interpretation and dissemination activities. Study documents (such as consent forms, topic guides, surveys and information sheets) were reviewed by PPI members; patient surveys and interview guides were piloted, and members also commented on the manuscript. [ABSTRACT FROM AUTHOR]

Introduction: There have been some concerns about the impact of temporary doctors, otherwise known as locums, on patient safety and the quality of care. Despite these concerns, research has paid little attention to the implications of locum working on patient experience. Methods: A qualitative semi‐structured interview study was conducted with 130 participants including locums, people working with locums and patients with experience of being seen or treated by locums. Analysis was conducted using a reflexive thematic approach and abductive analysis to position themes against wider knowledge. Results: Three main themes were constructed through analysis: (1) Awareness and disclosure; patients were not always aware if their doctor was a locum, and there was some debate about whether patients had a right to know, particularly if locum working presented quality and safety risks. (2) Continuity and accessibility of care; access was regarded as priority for acute conditions, but for long‐term or serious conditions, patients preferred to see a permanent doctor who knew their history, although it was acknowledged that locums could provide fresh perspectives. (3) Communication and practice; locums and patients described how consultations were approached differently when doctors worked as locums. Patients evaluated their interactions based on how safe they felt with practitioners. Conclusion: Patients reported that they were unlikely to have continuity of care with any doctors delivering care, regardless of their contractual status. Locums sometimes provided new perspectives on care which could be beneficial for patient outcomes, but for patients with long‐term, complex or serious conditions continuity of care was important, and these patients may avoid or delay seeking care when locums are the only available option. Patient or Public Contribution: Patients and carers were involved in our study from inception to dissemination. Our Patient and Public Involvement (PPI) forum was involved throughout project design and planning and gave us feedback and guidance on research materials and outputs (e.g., study protocol, participant information sheets, survey tools, interview schedules, emerging findings). Our PPI forum co‐produced our patient interview schedule, two members of our PPI forum led the patient focus groups and all were involved in analysis of patient interviews. Our PPI Chair was involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Context: Risk stratification has been suggested as a strategy for improving cancer screening. Any changes to existing programmes must be acceptable to the public. Objective: This study aimed to explore the preferences and considerations of individuals relating to the introduction of different risk‐based strategies to determine eligibility for colorectal cancer (CRC) screening. Study Design: Participants completed a discrete choice experiment (DCE) within online interviews. Nine conjoint‐analysis tasks were created, each with two potential CRC screening programmes. The attributes included personal risk of CRC, screening invitation strategy and impact. Participants chose between programmes while thinking aloud and sharing their thoughts. Transcripts were analysed using codebook thematic analysis. Participants: Twenty participants based in England aged 40–79 years without previous cancer history or medical expertise. Results: When choosing between programmes, participants first and primarily looked to prioritise saving lives. The harms associated with screening were viewed as a surprise but also felt by most to be inevitable; the benefits frequently outweighed, therefore, harms were considered less important. Risk stratification using individual characteristics was considered a nuanced approach to healthcare, which tended to be preferred over the age‐alone model. Detailed personal risk information could be taken more seriously than non‐personalised information to motivate behaviour change. Although it had minimal impact on decision‐making, not diverting resources for screening from elsewhere was valued. Individuals who chose not to provide health information were considered irresponsible, while it was important that those with no information to provide should not lose out. Conclusion: Risk‐stratified CRC screening is generally aligned with public preferences, with decisions between possible stratification strategies dominated by saving lives. Even if attributes including risk factors, risk stratification strategy and risk communication contributed less to the overall decision to select certain programmes, some levels more clearly fulfilled public values; therefore, all these factors should be taken into consideration when redesigning and communicating CRC screening programmes. Patient or Public Contribution: The primary data source for this study is interviews with 20 members of the public (current, past or future CRC screening invitees). Two public representatives contributed to planning this study, particularly the DCE. [ABSTRACT FROM AUTHOR]

Introduction: Social prescribing offers a formal pathway of connecting patients in the health system with sources of support within the community to help improve their health and well‐being. Since its launch in March 2022, the Canadian Institute for Social Prescribing has acted as a collective impact network to identify, connect and build upon established social prescribing initiatives using a co‐design methodology. The institute received input from a participant advisory council, co‐design partners and several communities of interest groups. This study aimed to describe the perceptions of the Canadian Institute for Social Prescribing's role in advancing social prescribing using a co‐design approach and the barriers and facilitators to implementing social prescribing in Canada. Methods: We used a qualitative descriptive study design, document analysis, participant observation and semi‐structured individual interviews (n = 7) with members of the Canadian Institute for Social Prescribing co‐design group and the institute's leadership. We also analysed documents, field notes and transcripts using codebook thematic analysis. Results: Four themes were developed representing the facilitators of implementing the Canadian Institute for Social Prescribing to support social prescribing: Creating relational mechanisms (i.e., partnerships and connections), Bringing awareness to social prescribing and contributing to the evidence (i.e., values and beliefs), Addressing systemic conditions (i.e., having a common language for social prescribing and organizing the community health sector) and Enabling funding and policy to drive social prescribing initiatives (i.e., shifting evidence into policy and securing sustainable funding). Conclusion: Participants' reflections on the co‐design process demonstrated that the Canadian Institute for Social Prescribing development provided networking opportunities and shared resources relevant to social prescribing. Co‐design efforts also fostered relational and informational support, which laid the necessary groundwork in Canada to overcome the complex interplay between the macro‐ and micro‐level settings in which social prescribing is practiced. Patient or Public Contribution: The interviews and observations involved participants with lived experience of delivering, receiving or advocating for social prescribing. [ABSTRACT FROM AUTHOR]

Introduction: Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value‐based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value‐based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. Methods: This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. Results: Data analysis generated three key themes: valued components of care; benefits of receiving valued care components and consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person‐centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value‐based care. Conclusions: This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value‐based cancer care. Patient or Public Contribution: This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co‐design approaches are embedded in our work. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to uncover perspectives on the COVID‐19 pandemic and the responses implemented by the UK and Scottish Governments to help control the spread of infection. Such understanding could help to inform future responses to pandemics at individual, community and national levels. Method: Q methodology was used to elicit perspectives from people in England and Scotland with different experiences of the pandemic including public health officials, key workers, those on furlough, those who were unvaccinated or vaccinated to different levels, those who were 'shielding' because they were at higher risk and people with different scientific expertise. Participants rank‐ordered phrases about different aspects of COVID‐19 according to their viewpoint. Factor analysis was then conducted in conjunction with interview material from the same respondents. Results: A four‐factor solution was statistically supported and was interpretable alongside the qualitative accounts of participants loading on these factors. These four perspectives are titled Dangerous and Unaccountable Leadership, Fear and Anger at Policy and Public responses, Governing Through a Crisis and Injustices Exposed. Conclusion: The four perspectives demonstrate plurality and nuance in views on COVID‐19 and the associated policies and restrictions, going beyond a binary narrative that has been apparent in popular and social media. The four perspectives include some areas of common ground, as well as disagreement. We argue that understanding the detail of different perspectives might be used to build cohesion around policy initiatives in future. Patient or Public Contribution: The development of the statement set, which is rank‐ordered by participants in a Q study, and factor interpretations were informed by views of the general public. The statement set was initially developed using existing publicly available material based on members of the general public experiencing the pandemic first hand. It was then piloted with members of the public experiencing different challenges as a result of COVID‐19 and the subsequent lockdown and updated based on feedback. Finally, interpretations of the identified factors were presented publicly and edited according to their feedback. [ABSTRACT FROM AUTHOR]

Background: Healthcare and support workers play a pivotal role in delivering quality services and support to people seeking sanctuary who have experienced poor physical and mental health linked to previous trauma, relocation and loss of freedoms. However, they often encounter various challenges in their daily work, ranging from communication barriers to resource constraints. This qualitative study seeks to delve into the perspectives of healthcare and support workers' experience of workarounds, employed to overcome barriers to providing care. Aim: This study aims to describe healthcare providers', practitioners' and health and third sector support workers' views on barriers and workarounds to providing care for people seeking sanctuary, to inform policy and practice. Design: A qualitative study was carried out using semi‐structured telephone interviews. Setting: This study focused on primary, secondary, community and specialist National Health Service (NHS) support services for people seeking sanctuary in Wales, United Kingdom (2018). Method: We interviewed 32 healthcare providers, practitioners and support workers employed by primary care and third sector organisations. Our approach involved obtaining verbal informed consent before digitally recording and transcribing all interviews. To analyse the data, we used the Four Levels of Change for Improving Quality model as a guiding framework for interpretation. Results: Our study findings reveal that certain respondents expressed challenges in meeting the needs of people seeking sanctuary; notably, their experience of delivering care differed by care settings. Specifically, those involved in providing specialist NHS care believed that there was room for improvement. Mainstream primary, secondary and community health practitioners faced limitations due to resource constraints and lacked tailored information to address the unique circumstances and needs of sanctuary seekers. To address these gaps, workarounds emerged at both individual and local levels (team/departmental and organisational level). These included establishing informal communication channels between providers, fostering cross service collaboration to fill gaps and adapting existing services to enhance accessibility. Conclusion: Understanding healthcare providers', practitioners' and support workers' perspectives offers invaluable insights into ways to enhance healthcare delivery to sanctuary seekers. Acknowledging challenges and harnessing innovative workarounds can foster a more effective and compassionate service for this vulnerable population. Patient or Public Contribution: The HEAR study actively involved public contributors in the design, delivery and dissemination of the research. Two public contributors (S. M. and G. R.) who had personal experience of seeking asylum served as study co‐applicants. They played pivotal roles in shaping the research by participating in its development and securing funding. Alongside other co‐applicants, S. M. and G. R. formed the Research Management Group, overseeing study delivery. Their contributions extended to strategic decision‐making and specific feedback at critical junctures, including participant recruitment, data collection, analysis and reporting. Additionally, S. M. and G. R. were instrumental in recruiting and supporting a team of peer researchers, enhancing respondent participation among people seeking sanctuary. To facilitate effective public involvement, we provided named contacts for support (A. K. and R. F.), research training, honoraria, reimbursement of expenses and accessible information in line with best practice. [ABSTRACT FROM AUTHOR]

Introduction: In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to complications and this management approach is now being questioned, with growing interest in maximising patients' short‐term quality‐of‐life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision‐making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality‐of‐life. Methods: We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12–16 weeks later. Data were analysed using a framework approach. Results: Both participant groups (SM/ERC) reported substantial, negative quality‐of‐life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals. Conclusion: Study findings can be used to support informed decision‐making about SM/ERC management of dens fractures in older/frail patients. Patient or Public Contribution: Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings. [ABSTRACT FROM AUTHOR]

Background: Design thinking is an iterative process that innovates solutions through a person‐centric approach and is increasingly used across health contexts. The person‐centric approach lends itself to working with groups with complex needs. One such group is families experiencing economic hardship, who are vulnerable to food insecurity and face challenges with child feeding. Objective: This study describes the application of a design thinking framework, utilizing mixed methods, including co‐design, to develop a responsive child‐feeding intervention for Australian families—'Eat, Learn, Grow'. Methods: Guided by the five stages of design thinking, which comprises empathizing, defining, ideating, prototyping, and testing. We engaged with parents/caregivers of a child aged 6 months to 3 years through co‐design workshops (n = 13), direct observation of mealtimes (n = 10), a cross‐sectional survey (n = 213) and semistructured interviews (n = 29). Findings across these methods were synthesized using affinity mapping to clarify the intervention parameters. Parent user testing (n = 12) was conducted online with intervention prototypes to determine acceptability and accessibility. A co‐design workshop with child health experts (n = 9) was then undertaken to review and co‐design content for the final intervention. Results: Through the design thinking process, an innovative digital child‐feeding intervention was created. This intervention utilized a mobile‐first design and consisted of a series of short and interactive modules that used a learning technology tool. The design is based on the concept of microlearning and responds to participants' preferences for visual, brief and plain language information accessed via a mobile phone. User testing sessions with parents and the expert co‐design workshop indicated that the intervention was highly acceptable. Conclusions: Design thinking encourages researchers to approach problems creatively and to design health interventions that align with participant needs. Applying mixed methods—including co‐design— within this framework allows for a better understanding of user contexts, preferences and priorities, ensuring solutions are more acceptable and likely to be engaged. [ABSTRACT FROM AUTHOR]

Context: Best practice guidelines for the recovery and return to work (RTW) of people with mental disorders recommend access to the services of an interdisciplinary team combining pharmacological, psychological and work rehabilitation interventions. In the Canadian context, primary healthcare services are responsible for providing these services for people with common mental disorders, such as depressive or anxiety disorders. However, not everyone has easy access to these recommended primary healthcare services, and previous studies suggest that multiple personal, practice‐related and organizational factors can influence the patient's journey. Moreover, previous studies documented that family physicians often work in silos and lack the knowledge and time needed to effectively manage by themselves patients' occupational health. Thus, the care and service trajectories of these patients are often suboptimal and can have important consequences on the person's recovery and RTW. Objective and Population Studied: Our study aimed to gain a better understanding of the patient journeys and the factors influencing their access to and experience with primary healthcare services while they were on sick leave due to a common mental disorder. Methods: A descriptive qualitative research design was used to understand and describe these factors. Conventional content analysis was used to analyze the verbatim. Results: Five themes describe the main factors that influenced the patient's journey of the 14 participants of this study: (1) the fragmented interventions provided by family physicians; (2) patients' autonomy in managing their own care; (3) the attitude and case management provided by the insurer, (4) the employer's openness and understanding and (5) the match between the person's needs and their access to psychosocial and rehabilitation services. Conclusions: Our findings highlight important gaps in the collaborative practices surrounding the management of mental health‐related sick leave, the coordination of primary healthcare services and the access to work rehabilitation services. Occupational therapists and other professionals can support family physicians in managing sick leaves, strengthen interprofessional and intersectoral collaboration and ensure that patients receive needed services in a timelier manner no matter their insurance coverage or financial needs. Patients of Public Contribution: This study aimed at looking into the perspective of people who have lived or are currently experiencing a sick leave related to a mental health disorder to highlight the factors which they feel hindered their recovery and RTW. Additionally, two patient partners were involved in this study and are now engaged in the dissemination of the research results and the pursuit of our team research programme to improve services delivered to this population. [ABSTRACT FROM AUTHOR]

Background: Long Covid is an emerging long‐term condition, with those affected raising concerns about lack of healthcare support. Objective: We conducted a qualitative study to identify facilitators and barriers to healthcare access for people with Long Covid, aiming to enhance our understanding of the specific nature of these barriers and how patient experiences may vary. Setting and Participants: In the context of the Symptoms, Trajectory, Inequalities and Management: Understanding Long‐COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE‐ICP) Delphi study, a nationally distributed online survey was conducted. Eight patients and eight healthcare practitioners (HCP) were interviewed via telephone or video call. Framework analysis, sensitised by the candidacy theory, was used to identify barriers and facilitators over four levels of access to care. Results: Three themes were identified: (i) patients' efforts to navigate emerging pathways for Long Covid, (ii) the patient–HCP interaction and (iii) service resources and structural constraints. Barriers to specialist care included long waiting times, communication gaps across services and a lack of continuity in care. Facilitators included collaborative, patient‐centred approaches, patients' active role in their healthcare and blended approaches for appointments. The perspectives of both patients and HCPs largely aligned. Discussion: The candidacy framework was valuable in understanding the experiences of people with Long Covid seeking access to healthcare. Individuals perceived themselves as eligible for care, but they often encountered obstacles in obtaining the expected level of care or, in some cases, did not receive it at all. Our findings are discussed in the context of the candidacy model through multiple processes of identification, negotiation, permeability and appearances at health services. These themes seem to be especially important for the emerging new pathway model and are relevant to both primary and secondary care. Conclusions: This study highlights that despite these interviews being conducted two years after the start of the COVID‐19 pandemic, people with Long Covid still struggle to access healthcare, emphasising the ongoing need to provide equitable timely healthcare access for people with Long Covid. Patient or Public Contribution: People with Long Covid advised on all stages of this research. [ABSTRACT FROM AUTHOR]

Introduction: The transition from hospital to home is often suboptimal, resulting in patients not receiving the necessary allied healthcare after discharge. This may, in turn, lead to delayed recovery, a higher number of readmissions, more emergency department visits and an increase in mortality and healthcare costs. This study aimed to gain insight into patients' experiences, perceptions, and needs regarding hospital‐to‐home transition, focusing on allied healthcare as a first step towards the development of a transitional integrated allied healthcare pathway for patients with complex care needs after hospital discharge. Methods: We conducted semistructured interviews with patients. Participants were recruited from universities and general hospitals in the Amsterdam region between May and July 2023. They were eligible if they (1) were discharged from the hospital minimally 3 and maximally 12 months after admission to an oncologic surgery department, internal medicine department, intensive care unit, or trauma centre, (2) received hospital‐based care from at least one allied healthcare provider, who visited the patient at least twice during hospital admission, (3) spoke Dutch or English and (4) were 18 years or older. Interviews were audio‐recorded and transcribed verbatim. We performed a thematic analysis of the interview data. Results: Nineteen patients were interviewed. Three themes emerged from the analysis. 'Allied healthcare support during transition' depicts patients' positive experiences when they felt supported by allied health professionals during the hospital‐to‐home transition. 'Patient and family involvement' illustrates how much patients value the involvement of their family members during discharge planning. 'Information recall and processing' portrays the challenges of understanding and remembering overwhelming amounts of information, sometimes unclear and provided at the wrong moment. Overall, patients' experiences of transitional care were positive when they were involved in the discharge process. Negative experiences occurred when their preferences for postdischarge communication were ignored. Conclusions: This study suggests that allied health professionals need to continuously collaborate and communicate with each other to provide patients and their families with the personalized support they need. To provide high‐quality and person‐centred care, it is essential to consider how, when, and what information to provide to patients and their families to allow them to contribute to their recovery actively. Patient or Public Contribution: The interview guide for this manuscript was developed with the assistance of patients, who reviewed it and provided us with feedback. Furthermore, patients provided us with their valuable lived experiences by participating in the interviews conducted for this study. [ABSTRACT FROM AUTHOR]

Aims: This study aimed to explore the perceptions of Meals on Wheels (MoWs) service users (SUs), and people who refer them to MoWs ('referrers'), with accessing and commencing the service in England, the barriers that might hinder service uptake, and what information would be valued when considering accessing the service. Methods: Semistructured interviews were conducted in May–July 2022 with seven SUs and 21 referrers, recruited from four MoWs providers across England. Data were analysed using inductive thematic analysis. Results: Participants indicated various pathways into the service, but referrers (family members) were more likely to be the ones enquiring about, and commencing, MoWs for SUs. Once an enquiry about MoWs had been made, the service was perceived as straightforward to set up. However, existing preconceptions and stereotypes were perceived to act as barriers to accessing MoWs. Information that participants deemed important to have available when deciding on whether to access MoWs related to the meals, the specific services provided, the reliability and flexibility of delivery and the cost of services. Conclusion: These findings could inform MoWs service providers' public awareness strategies about MoWs, to facilitate referrals to the service for adults with care and support needs. Patient or Public Contribution: An advisory group of people with lived experience of MoWs (users of the service and their family referrers) extensively discussed the findings of the research and advised on the implications and future dissemination steps. [ABSTRACT FROM AUTHOR]

Background: Indiscriminate use of laboratory blood testing in hospitals contributes to patient discomfort and healthcare waste. Patient engagement in low‐value healthcare can help reduce overuse. Understanding patient experience is necessary to identify opportunities to improve patient engagement with in‐hospital laboratory testing. Objectives: To understand patient experience with the process of in‐hospital laboratory blood testing. Methods: We used a qualitative study design via semistructured interviews conducted online or over the phone. Participants were adult patients or family members/caregivers (≥18 years of age) with a recent (within 12 months of interview) experience of hospitalization in Alberta or British Columbia, Canada. We identified participants through convenience sampling and conducted interviews between May 2021 and June 2022. We analysed transcripts using thematic content analysis. Recruitment was continued until code saturation was reached. Results: We interviewed 16 participants (13 patients, 1 family member and 2 caregivers). We identified four themes from patients' experiences of in‐hospital laboratory blood testing: (i) patients need information from healthcare teams about expected blood testing processes, (ii) blood draw processes should consider patient comfort and preferences, (iii) patients want information from their healthcare teams about the rationale and frequency of blood testing and (iv) patients need information on how their testing results affect their medical care. Conclusion: Current laboratory testing processes in hospitals do not facilitate shared decision‐making and patient engagement. Patient engagement with laboratory testing in hospitals requires an empathetic healthcare team that provides clear communication regarding testing procedures, rationale and results, while considering patient preferences and offering opportunities for involvement. Patient or Public Contribution: We interviewed 16 patients and/or family members/caregivers regarding their in‐hospital laboratory blood testing experiences. Our findings show correlations between patient needs and patient recommendations to make testing processes more patient‐centred. To bring a lived‐experience lens to this study, we formed a Patient Advisory Council with 9–11 patient research partners. Our patient research partners informed the research design, co‐developed participant recruitment strategies, co‐conducted data collection and informed the data analysis. Some of our patient research partners are co‐authors of this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. Methods: We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second‐level analysis involved applying themes and subthemes to cross‐functional process maps. Findings: Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. Conclusion: The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. Patient or Public Contribution: The research team is composed of patients, researchers, clinicians and decision‐makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way. [ABSTRACT FROM AUTHOR]

Background: More than 90% of deaf children are born to hearing families who know little about deafness. Benefits from hearing screening at birth are often lost, as families find little information about pathways for deaf children but are key to ensuring deaf children receive relevant language and communication support. Systems surrounding deaf children and family members are crucial for children's health and social development. Experiences of hearing parents raising deaf children and understanding factors that influence families' experience of navigating pathways for deaf children through health and education services are currently underreported. Methods: An exploratory study was conducted in Wales, UK. Twenty participants were interviewed, including 10 hearing parents of deaf children and 10 people who work with deaf children using semistructured interviews. Bronfenbrenner's ecological systems theory was used as a lens to explore the micro‐, meso‐, exo‐, macro‐ and chronosystems that surround children and families. This study explores potential supports and barriers in those systems. Findings: Findings are reported under two broad headings: enablers and barriers. Under enablers, it was found that provision of resources, supporting people and knowledge were key factors. Under barriers, a lack of knowledge, lack of provision and battling services and attitudes were key issues that need addressing. Conclusion: Hearing parents of deaf children in Wales, UK reported experiencing a range of enablers and barriers that impact upon their experiences of raising a deaf child. Further provision is needed by policymakers and governments to recognise support needs to improve the outcomes for deaf children. Patient or Public Contribution: This project was developed from initial discussions with the stakeholder reference group and progressed with the group's deaf panel and hearing parents with deaf children. The project's steering group was involved in study design, recruitment and continuous feedback on all stages of the research process. [ABSTRACT FROM AUTHOR]

Introduction: Digital delivery of pre‐operative total knee replacement (TKR) education and prehabilitation could improve patient outcomes pre‐ and post‐operatively. Rigorously developing digital interventions is vital to help ensure they achieve their intended outcomes whilst mitigating their potential drawbacks. Objective: To develop a pre‐operative TKR education and prehabilitation digital intervention, the 'Virtual Knee School' (VKS). Methods: The VKS was developed using an evidence‐, theory‐ and person‐based approach. This involved a mixed methods design with four phases. The first three focused on planning the VKS. The final phase involved creating a VKS prototype and iteratively refining it through concurrent think‐aloud interviews with nine patients who were awaiting/had undergone TKR. Meta‐inferences were generated by integrating findings from all the phases. ISRCTN registration of the overall project was obtained on 24 April 2020 (ISRCTN11759773). Results: Most participants found the VKS prototype acceptable overall and considered it a valuable resource. Conversely, a minority of participants felt the prototype's digital format or content did not meet their individual needs. Participants' feedback was used to refine the prototype's information architecture, design and content. Two meta‐inferences were generated and recommend: 1.Comprehensive pre‐operative TKR education and prehabilitation support should be rapidly accessible in digital and non‐digital formats.2.Pre‐operative TKR digital interventions should employ computer‐ and self‐tailoring to account for patients' individual needs and preferences. Conclusions: Integrating evidence, theory and stakeholders' perspectives enabled the development of a promising VKS digital intervention for patients awaiting TKR. The findings suggest future research evaluating the VKS is warranted and provide recommendations for optimising pre‐operative TKR care. Patient or Public Contribution: Patient and Public Involvement (PPI) was central throughout the project. For example, PPI representatives contributed to the project planning, were valued members of the Project Advisory Group, had key roles in developing the VKS prototype and helped disseminate the project findings. [ABSTRACT FROM AUTHOR]

Background A number of expert reports have pointed to serious problems with health care in many Latin American countries and argued the need to reform and improve health-care systems. In addition, the Ministers of Health of the Americas have stated that health systems should be accountable to citizens. Objective This paper examines, in each of 17 Latin American countries, public dissatisfaction with the health care to which people have access, the proportion of people reporting problems with access to and the cost of health care and the factors that are most important in driving public dissatisfaction. Methods Data are drawn from a 2007 Latinobarómetro survey of 19 212 adults interviewed face-to-face in 17 Latin American countries. Results The proportion of people expressing dissatisfaction with their health care varies a great deal by country, as do the proportions reporting problems with access to and the cost of health care. Problems with access to care seem to matter most in trying to explain public dissatisfaction with their health care. More traditional measures of health outcomes and resources seem to matter less as drivers of dissatisfaction. Conclusions For governments trying to improve their citizens' satisfaction with the health care they receive, the highest priority would be improving people's basic access to health-care services. Also, it appears that democratic governments are seen as being more responsive to the public's needs in health care. [ABSTRACT FROM AUTHOR]

Introduction: Health, social care, charitable and justice sectors are increasingly recognising the need for trauma‐informed services that seek to recognise signs of trauma, provide appropriate paths to recovery and ensure that services enable people rather than retraumatise. Foundational to the development of trauma‐informed services is collaboration with people with lived experience of trauma. Co‐production principles may provide a useful framework for this collaboration, due to their emphasis on lived experience, and intent to address power imbalances and promote equity. This article aims to examine trauma‐informed and co‐production principles to consider the extent to which they overlap and explore how to tailor co‐production approaches to support people who have experienced trauma. Methods: Bridging Gaps is a collaboration between women who have experienced complex trauma, a charity that supports them, primary care clinicians and health researchers to improve access to trauma‐informed primary care. Using co‐production principles, we aimed to ensure that women who have experienced trauma were key decision‐makers throughout the project. Through reflective notes (n = 19), observations of meetings (n = 3), interviews with people involved in the project (n = 9) and reflective group discussions on our experiences, we share learning, successes and failures. Data analysis followed a framework approach, using trauma‐informed principles. Results: Co‐production processes can require adaptation when working with people who have experienced trauma. We emphasise the need for close partnership working, flexibility and transparency around power dynamics, paying particular attention to aspects of power that are less readily visible. Sharing experiences can retrigger trauma. People conducting co‐production work need to understand trauma and how this may impact upon an individual's sense of psychological safety. Long‐term funding is vital to enable projects to have enough time for the establishment of trust and delivery of tangible results. Conclusions: Co‐production principles are highly suitable when developing trauma‐informed services. Greater consideration needs to be given as to whether and how people share lived experiences, the need for safe spaces, honesty and humility, difficult dynamics between empowerment and safety and whether and when blurring boundaries may be helpful. Our findings have applicability to policy‐making, funding and service provision to enable co‐production processes to become more trauma‐informed. Public Contribution: Bridging Gaps was started by a group of women who have experienced complex trauma, including addiction, homelessness, mental health problems, sexual exploitation, domestic and sexual violence and poverty, with a general practitioner (GP) who provides healthcare to this population, alongside a support worker from the charity One25, a charity that supports some of the most marginalised women in Bristol to heal and thrive. More GPs and healthcare researchers joined the group and they have been meeting fortnightly for a period of 4 years with the aim of improving access to trauma‐informed primary care. The group uses co‐production principles to work together, and we aim to ensure that women who have experienced trauma are key decision‐makers throughout our work together. This article is a summary of our learning, informed by discussion, observations and interviews with members of the group. [ABSTRACT FROM AUTHOR]

Introduction: Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE‐Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informational and educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical team and themselves. Methods: A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patients and on the clinical team. Results: In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stress and become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. Conclusion: By mobilizing their experiential knowledge, APs provide emotional, informational, cognitive and navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. Patient or Public Contribution: Two patient–researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript. [ABSTRACT FROM AUTHOR]

Background: Modifiable factors such as substance use, lack of attendance at antenatal care, overweight or obesity and sleeping position are associated with a higher risk of stillbirth. This qualitative study aimed to explore women's experiences of modifiable factors during pregnancy and their awareness of stillbirth. Methods: Purposive sampling was implemented by hospital staff in a large tertiary maternity hospital in Ireland between November 2020 and March 2021. Women were approached during their stay in the hospital and were invited to participate in a semistructured interview 3–5 months later. Eligible women were primiparous, >18 years of age and had an uncomplicated pregnancy and delivery. Eighteen women who consented to be followed up were interviewed at 3–5 months postpartum. Thematic analysis was used to analyse the data. Results: Four themes were identified: attitudes towards behaviour change, awareness regarding stillbirth and risk factors, the silence around stillbirth and risks, and attitudes towards receiving information about stillbirth. Women spoke about behaviour change in terms of outcomes, and most changes (e.g., ceasing alcohol consumption) were perceived as easy to manage. Awareness of stillbirth was limited among the women interviewed, and the association between risk behaviours and stillbirth was not known by any woman. Results suggest that there is a silence around stillbirth, including in antenatal care, which hinders information provision. However, most women highlighted the value of receiving information and extra education about modifiable risk factors and stillbirth. Conclusion: There is a general lack of understanding of the link between behavioural risk factors and potential pregnancy outcomes such as stillbirth. Providing further information to women about stillbirth and providing additional support with behaviour change might contribute to enhancing preventive efforts. Patient or Public Contribution: Patients were involved in this study by providing their experiences of antenatal care which were used as primary data. [ABSTRACT FROM AUTHOR]

Introduction: Following 2016 legislation permitting limited access to cannabis for research and medicinal purposes, the number of randomized clinical trials (RCTs) investigating the effectiveness of medicinal cannabis (MC) on symptom burden relief in cancer contexts has increased in Australia. This study aimed to understand the perceptions, hopes and concerns of people with advanced cancer regarding the future availability and regulation of MC in Australia. Methods: This qualitative study draws on semistructured interviews conducted between February 2019 and October 2020 in Brisbane, Australia, as part of an MC RCT substudy. Interviews were undertaken on 48 patients with advanced cancer in palliative care eligible to participate in an MC trial (n = 26 participated in an RCT; n = 2 participated in a pilot study; n = 20 declined). Interviews included a discussion of patients' decision‐making regarding trial participation, concerns about MC and perceptions of future availability, including cost. Transcribed interviews were analysed inductively and abductively, informed by constructivist thematic analysis conventions. Results: Overall, participants supported making MC legally accessible as a prescription‐only medication. Fear of financial toxicity, however, compromised this pathway. Steep posttrial costs of accessing MC prompted several people to decline trial participation, and others to predict—if found effective—that many would either access MC through alternative pathways or reduce their prescribed dosage to enable affordable access. Conclusions: These findings suggest that—despite a relatively robust universal healthcare system—Australians are potentially vulnerable to and fearful of financial toxicity. Prevalent in the United States, financial toxicity occurs when disadvantaged cancer patients access necessary but expensive medications with lasting consequences: bankruptcy, ongoing anxiety and cancer worry. Interview transcripts indicate that financial fears—and the systems sustaining them—may pose a threat to RCT completion and to equitable access to legal MC. Such findings support calls for embedding qualitative substudies and community partnerships within RCTs, while also suggesting the importance of subsidisation to overcoming injustices. Patient or Public Contribution: A patient advisory committee informed RCT design. This qualitative substudy foregrounds patients' decision‐making, perceptions and experiences. [ABSTRACT FROM AUTHOR]

Introduction: Biomedical progress has facilitated breakthrough advanced neurotherapeutic interventions, whose potential to improve outcomes in rare neurological diseases has increased hope among people with lived experiences and their carers. Nevertheless, gene, somatic cell and other advanced neurotherapeutic interventions carry significant risks. Rare disease patient organizations (RDPOs) may enhance patient experiences, inform expectations and promote health literacy. However, their perspectives are understudied in paediatric neurology. If advanced neurotherapeutics is to optimize RDPO contributions, it demands further insights into their roles, interactions and support needs. Methods: We used a mixed‐methodology approach, interviewing 20 RDPO leaders representing paediatric rare neurological diseases and following them up with two online surveys featuring closed and open‐ended questions on advanced neurotherapeutics (19/20) and negative mood states (17/20). Qualitative and quantitative data were analysed using thematic discourse analysis and basic descriptive statistics, respectively. Results: Leaders perceived their roles to be targeted at educational provision (20/20), community preparation for advanced neurotherapeutic clinical trials (19/20), information simplification (19/20) and focused research pursuits (20/20). Although most leaders perceived the benefits of collaboration between stakeholders, some cited challenges around collaborative engagement under the following subthemes: conflicts of interest, competition and logistical difficulties. Regarding neurotherapeutics, RDPO leaders identified support needs centred on information provision, valuing access to clinician experts and highlighting a demand for co‐developed, centralized, high‐level and understandable, resources that may improve information exchange. Leaders perceived a need for psychosocial support within themselves and their communities, proposing that this would facilitate informed decision‐making, reduce associated psychological vulnerabilities and maintain hope throughout neurotherapeutic development. Conclusion: This study provides insights into RDPO research activities, interactions and resource needs. It reveals a demand for collaboration guidelines, central information resources and psychosocial supports that may address unmet needs and assist RDPOs in their advocacy. Patient or Public Contribution: In this study, RDPO leaders were interviewed and surveyed to examine their perspectives and roles in advanced neurotherapeutic development. Some participants sent researchers postinterview clarification emails regarding their responses to questions. [ABSTRACT FROM AUTHOR]

Introduction: The Covid‐19 restrictions of 2020–2021 are known to have undermined the UK population's mental health. Working alongside staff, peer trainers and students at Recovery in Mind (RiM), a Recovery College (RC) in West Berkshire, England, this mixed‐methods study is amongst the first to investigate how an RC has responded to the pandemic. Methods: Working in co‐production with RiM staff and peer‐trainers, this study employed a mixed‐methods design, gathering Warwick‐Edinburgh Mental Wellbeing Scale (WEMWBS) well‐being outcome measures by questionnaire and student experience, learning and co‐production by interviews. Findings: This research found that RiM continued to produce demonstrable improvements in student mental health. Students welcomed the way that RiM adapted to offering online and socially distanced provisions. Students valued the skills that RiM taught and the way that RiM courses reinforced prior learning; above this, however, they valued the mutual support and sense of community that participation provided. Conclusion: This study underlines the value of RCs maintaining 'hidden curriculums' of peer support and community involvement. This research emphasizes co‐production as not only a tool for empowerment or service improvement but as a valuable skill for personal mental health recovery. Even when operating under the most unforeseen or challenging of conditions, RCs should always endeavour to prioritize and maintain co‐production. Patient or Public Contribution: In accordance with the RC ethos, this was an entirely co‐produced study, with academic researchers and RiM staff and peer trainers working democratically in partnership with one another to design and manage the study and to write up and disseminate findings. To ensure the independence and rigour of findings, data analysis was undertaken by external academic researchers. [ABSTRACT FROM AUTHOR]

Introduction: Patients discharged following hospitalization for COVID‐19 require clear discharge protocols, information resources and communications to adequately prepare them to safely and successfully transition from hospital to home. Our study focuses on the patients' transition to recovering at home including their hospital discharge preparation and hospital experiences. Methods: A qualitative descriptive study design involved interviewing patients who had been hospitalized for COVID‐19 in one urban Alberta, Canada centre. Purposive sampling was used to select patients from a centralized COVID‐19 hospital patient database stratified by month between March 2020 and February 2021. Other inclusion criteria (e.g., sex and age) were also considered. Semi‐structured interviews with patients were recorded, transcribed and analysed using thematic analysis. Data sufficiency and saturation were determined. Results: Twelve patients shared their lived experiences and recovery journey from COVID‐19. Themes were reported under three main areas as framed by the study aim—the current status of patients recovering at home, including the supports they used to manage; their discharge process and preparation to go home; and their various hospital‐related experiences. Suggestions for improving aspects of the patient journey were also captured. Conclusion: Findings provided details of the needs, information gaps and what matters most to patients when they are recovering from COVID‐19 at home, including their preparation to safely and successfully transition from hospital to home (i.e., feeling well prepared to go home, including being adequately assessed and having clear discharge protocols and communication). Key learnings were applied to improve or develop patient discharge and transition resources. Patient or Public Contribution: A patient/family advisor and patient experience partners were involved throughout the study, codeveloping all aspects, from the study design to the reporting and application of the findings. Leading into the study, patient experiences and feedback regarding the home from hospital recovery journey informed multiple aspects, including the codevelopment of the interview guide. [ABSTRACT FROM AUTHOR]

Introduction: This mixed‐method study explores psychological needs, access and barriers in coronary heart disease (CHD) patients with and without mental health issues (MHI) within the German healthcare system. Methods: This study was conducted in three different healthcare settings: two hospitals, two rehabilitation clinics and three cardiology practices in Cologne, Germany. Patients were screened for angiographically documented CHD and other inclusion criteria. In total, 364 CHD patients took part in this study. It consisted of two parts: In the first part, participants filled in a newly developed questionnaire about their psychological needs, access and barriers within the healthcare system and their contact with their doctor in these matters. Then, patients were screened for MHIs with the help of the Hospital Anxiety and Depression Scale (HADS). When a score above seven was scored on the HADS, patients were additionally screened for specific MHIs using the Structured Clinical Interview for DSM‐IV Axis I Disorders. In the second part, 20 participants were subsequently interviewed in a semi‐structured interview to generate more in‐depth findings. Results: The interviews show that CHD patients with and without MHI experienced a cardiac event as life‐changing and had an urgent need to talk about CHD with their doctor, mostly the general practitioner (GP). When the GP spoke to the patient shortly after the cardiac event, patients experienced relief and were better able to cope with their illness. Only 9.1% reported being aided in their search for psychotherapeutic treatment or drug treatment (4.1%). Conclusion: The needs of CHD patients with and without MHI were not adequately satisfied within our sample. Psychological measures are necessary for sufficient improvement, such as training of doctors in doctor–patient communication (e.g., better support in coping with MHI/CHD), improvements in the procedure (more time for conversations during doctor contacts), and improvement of structural requirements (referring patients faster to psychotherapists). Patient or Public Contribution: We received input from patients during pretests and used the feedback to tailor our questionnaire and the interview guidelines. Afterwards, we disseminated the main results for the patient and public involvement (e.g., public lectures, leaflets for self‐help groups, etc.). [ABSTRACT FROM AUTHOR]

Background: Self‐management strategies improve asthma outcomes, although interventions for South Asian populations have been less effective than in White populations. Both self‐management and culture are dynamic, and factors such as acculturation and generation have not always been adequately reflected in existing cultural interventions. We aimed to explore the perspectives of Bangladeshi and Pakistani people in the United Kingdom, across multiple generations (first, second and third/fourth), on how they self‐manage their asthma, with a view to suggesting recommendations for cultural interventions. Methods: We purposively recruited Bangladeshi and Pakistani participants, with an active diagnosis of asthma from healthcare settings. Semi‐structured interviews in the participants' choice of language (English, Sylheti, Standard Bengali or Urdu) were conducted, and data were analysed thematically. Results: Twenty‐seven participants (13 Bangladeshi and 14 Pakistani) were interviewed. There were generational differences in self‐management, influenced by complex cultural processes experienced by South Asians as part of being an ethnic minority group. Individuals from the first generation used self‐management strategies congruent to traditional beliefs such as 'sweating' and often chose to travel to South Asian countries. Generations born and raised in the United Kingdom learnt and experimented with self‐management based on their fused identities and modified their approach depending on whether they were in familial or peer settings. Acculturative stress, which was typically higher in first generations who had migration‐related stressors, influenced the priority given to asthma self‐management throughout generations. The amount and type of available asthma information as well as social discussions within the community and with healthcare professionals also shaped asthma self‐management. Conclusions: Recognizing cultural diversity and its influence of asthma self‐management can help develop effective interventions tailored to the lives of South Asian people. Patient or Public Contribution: Patient and Public Involvement colleagues were consulted throughout to ensure that the study and its materials were fit for purpose. [ABSTRACT FROM AUTHOR]

Introduction: Remote home monitoring models were implemented during the COVID‐19 pandemic to shorten hospital length of stay, reduce unnecessary hospital admission, readmission and infection and appropriately escalate care. Within these models, patients are asked to take and record readings and escalate care if advised. There is limited evidence on how patients and carers experience these services. This study aimed to evaluate patient experiences of, and engagement with, remote home monitoring models for COVID‐19. Methods: A rapid mixed‐methods study was carried out in England (conducted from March to June 2021). We remotely conducted a cross‐sectional survey and semi‐structured interviews with patients and carers. Interview findings were summarized using rapid assessment procedures sheets and data were grouped into themes (using thematic analysis). Survey data were analysed using descriptive statistics. Results: We received 1069 surveys (18% response rate) and conducted interviews with patients (n = 59) or their carers (n = 3). 'Care' relied on support from staff members and family/friends. Patients and carers reported positive experiences and felt that the service and human contact reassured them and was easy to engage with. Yet, some patients and carers identified problems with engagement (e.g., hesitancy to self‐escalate care). Engagement was influenced by patient factors such as health and knowledge, support from family/friends and staff, availability and ease of use of informational and material resources (e.g., equipment) and service factors. Conclusion: Remote home monitoring models place responsibility on patients to self‐manage symptoms in partnership with staff; yet, many patients required support and preferred human contact (especially for identifying problems). Caring burden and experiences of those living alone and barriers to engagement should be considered when designing and implementing remote home monitoring services. Patient or Public Contribution: The study team met with service users and public members of the evaluation teams throughout the project in a series of workshops. Workshops informed study design, data collection tools and data interpretation and were conducted to also discuss study dissemination. Public patient involvement (PPI) members helped to pilot patient surveys and interview guides with the research team. Some members of the public also piloted the patient survey. Members of the PPI group were given the opportunity to comment on the manuscript, and the manuscript was amended accordingly. [ABSTRACT FROM AUTHOR]

Introduction: The global prevalence of diabetes in 2019 in adults was estimated to be 9.3%. This study developed in Ecuador, for the first time, instruments to assess patient‐reported outcomes and experiences. Methods: The Experiences of the Person with Diabetes (EPD) Questionnaire is a diabetes‐specific instrument. A mixed‐methods study was conducted. First, a qualitative item development phase that included four focus groups and six semi‐structured interviews with patients was conducted in different rural and urban areas of Ecuador to obtain information on culture, beliefs, demographics, diet and social perspectives. A second quantitative phase for psychometric validation was carried out in primary care settings of rural and urban areas of Ecuador. Results: Forty‐two and four hundred and eighty‐nine participants were included in each phase, respectively. The item development phase resulted in a questionnaire of 44 items (23 for perceived outcomes and 21 for experiences). In the validation study, most participants were women (58%) and from urban areas (57%). Exploratory factor analysis revealed three dimensions for each instrument. Outcomes instrument dimensions were symptoms and burnout, worries and fears and social limitations. Experiences instrument dimensions were information, patient‐centred care and care delivery. Cronbach's α values of the total score and dimensions were high, ranging between.81 and.93 in both instruments. Confirmatory factor analysis showed an acceptable fit of the data. Conclusion: The EPD Questionnaire is probably the first instrument developed to assess patient‐reported experiences and perceived outcomes in a middle‐income country that included patients to capture all dimensions relevant for the intended population. Its psychometric properties are robust and could provide valuable information for clinicians and policymakers in the region. Patient or Public Contribution: The development of these instruments has taken into consideration patients and the public since their conception. A qualitative approach gathered relevant information related to the cultural, social and economic burden of different populations in Ecuador. Before validation, a pilot test was carried out with users of the National Health Services to obtain their perspectives and insights of the developed instrument. Finally, during the data analysis, we have given special consideration to social variables such as rural and urban populations. [ABSTRACT FROM AUTHOR]

Background: Patient participation in patient safety activities in care processes is a fundamental element of safer care. Patients play an important role in preventing patient safety incidents and improving health outcomes. Therefore, healthcare providers need to develop and provide educational materials and actionable tools for patient participation. Objectives: This study aimed to develop a mobile application for health consumers' participation and evaluate the effect of the mobile application on improving health consumers' participation in patient safety. Methods: A quasi‐experimental design was adopted. We developed a mobile application on the basis of a needs assessment, literature review, compilation of patient safety topics, and validity testing of the application. The target population included Korean adults aged between 30 and 65 years who had visited a medical institution more than once within the most recent 6 months. The intervention group received patient participation training by using the mobile application, Application for Patient Participation in Safety Enhancement, for 2 months. The primary outcome variables were patient safety knowledge, self‐efficacy of participation, willingness to participate and experience of patient participation in patient safety activities. End‐user satisfaction was assessed using a questionnaire. To assess participants' experiences with the intervention, qualitative data were collected through a focus group interview and open‐ended responses to an end‐user satisfaction survey. Results: The intervention group (n = 60) had significantly higher overall average scores than the control group (n = 37) with regard to patient safety knowledge (p <.001), self‐efficacy of participation (p =.001), willingness to participate (p =.010) and experience of participation (p =.038) in the post‐survey. The total mean end‐user satisfaction score was 3.56 ± 0.60. The participants expressed the realization that patients could play an important role in improving patient safety. Conclusions: This study demonstrated that educating health consumers through a mobile application with useful information improves patient participation in patient safety activities. Educational materials and patient participation tools could motivate health consumers' health‐related behaviours. Patient or Public Contribution: Patients were involved during the programme development and evaluation. [ABSTRACT FROM AUTHOR]

Background: Patients are increasingly expected to take an active role in their own care. Participation in nursing documentation can support patients to take this active role since it provides opportunities to express care needs and preferences. Yet, patient participation in electronic nursing documentation is not self‐evident. Objective: To explore how home‐care patients perceive their participation in electronic nursing documentation. Methods: Semi‐structured interviews were conducted with 21 home‐care patients. Interview transcripts were analysed in an iterative process based on the principles of reflexive inductive thematic analysis. Results: We identified a typology with four patient types: 'high need, high ability', 'high need, low ability', 'low need, high ability' and 'low need, low ability'. Several patients felt a need for participation because of their personal interest in health information. Others did not feel such a need since they trusted nurses to document the information that is important. Patients' ability to participate increased when they could read the documentation and when nurses helped them by talking about the documentation. Barriers to patients' ability to participate were having no electronic devices or lacking digital skills, a lack of support from nurses and the poor usability of electronic patient portals. Conclusion: Patient participation in electronic nursing documentation varies between patients since home‐care patients differ in their need and ability to participate. Nurses should tailor their encouragement of patient participation to individual patients' needs and abilities. Furthermore, they should be aware of their own role and help patients to participate in the documentation. Patient or Public Contribution: Home‐care patients were involved in the interviews. [ABSTRACT FROM AUTHOR]

Introduction: The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. This study sought to determine priority issues facing men with PCa, barriers and enablers to accessing care and whether health professionals (HPs) and men would support the inclusion of a patient‐reported outcome (PRO) comparator tool. Methods: We conducted four online focus groups with HPs recruited from healthcare services in Victoria, followed by seven online codesign workshops with men with PCa, recruited through the Victorian Prostate Cancer Outcomes Registry, Prostate Cancer Foundation Australia and the Cancer Council Victoria. Men were eligible to participate if they had lived experience of PCa and access to the internet. We analysed focus groups thematically. Workshops were analysed using descriptive‐content analysis. Results: HPs (n = 39) highlighted that men had shifting priorities over time, but noted the importance of providing information to men in lay terms to assist in treatment decision‐making and side‐effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO comparator tool received mixed support from HPs, with 41% (n = 16) supportive, 49% (n = 19) unsure and 10% (n = 4) not supportive. Men involved in workshops (n = 28) identified informational needs to assist in treatment decision‐making and side‐effect management as the top priority throughout care. Men described support groups and practice nurses as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool in a portal. Conclusions: Our findings suggest that a patient support portal should provide information in lay terms that address the shifting priorities of men with PCa. Men with PCa would welcome the development of a portal to centralize support information and a PRO comparator tool to prompt health‐seeking behaviour. Future research will implement these findings in the development of a portal, and pilot and evaluate the portal within a population‐based sample. Patient or Public Contribution: This project adopted a codesign approach including both men with PCa and HPs involved in PCa care. Men with PCa also formed part of the study's steering committee and consumer advisory groups. HPs were consulted in a serious of online focus groups. Subsequently, men with PCa and their support persons participated in workshops. Men with PCa were also involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Background: There is a need for effective health service solutions to provide greater structure and support for implementing evidence‐based practice in back pain care. Patient involvement in developing these solutions is crucial to increase relevance, acceptability and uptake. Objectives: To determine patients' perceived needs and barriers to best‐practice back pain care, and potential solutions to better address care needs. The study is the third in a series of needs assessment studies feeding into the 'idea generation' for service design in a large teaching hospital in a culturally and linguistically diverse community in metropolitan Sydney, Australia. Design: We conducted a combination of focus groups and in‐depth interviews using an interpretive description approach. We used inductive thematic analysis to identify the main themes. Setting and Participants: We purposively sampled patients with diverse characteristics from the neurosurgery and physiotherapy outpatient clinics, in particular those whose primary language was English, Arabic, Persian or Mandarin. Non‐English audio recordings were translated and transcribed by bilingual researchers. Results: There were 24 participants (focus groups = 9; individual interviews = 15) when data saturation was reached. The analysis identified three key themes with several subthemes around what service designers needed to understand in helping people with back pain in this setting: (1) This is who I am; (2) It's not working for me; and (3) What I think I need. Discussion and Conclusion: This study highlights that perceived unmet needs of patients are underpinned by unhelpful beliefs about the causes of and solutions for back pain, misaligned care expectations, unclear expectations of the hospital role and fragmentations in the health system. To design and implement a service that can deliver better back pain care, several solutions need to be integrated around: developing new resources that challenge unhelpful beliefs and set realistic expectations; improving access to education and self‐management resources; focusing on individualized care; using a collaborative multidisciplinary approach within the hospital; and better connecting with and directing primary health care services. Patient or Public Contribution: A consumer representative of the Western Sydney Local Health District provided input during study conceptualisation and is duly recognized in the Acknowledgements section. [ABSTRACT FROM AUTHOR]

Background: Participants want to receive the results of trials that they have participated in. Dissemination practices are disparate, and there is limited guidance available on what information to provide to participants and how to deliver it. Objectives: This study aimed to establish what trial participants believe should be included in a results summary and how this information should be delivered. Methods: A mixed‐methods design was used with focus groups and interviews involving women convenience‐sampled from two host randomized‐controlled trials. Participants ranked information items in order of their importance for inclusion in a trial results summary and potential modes of delivery by preference. All participants provided written informed consent. Results: Sixteen women (mean age [SD] = 71.6 [9.7] years) participated. Participants ranked 'individual results from the study' and 'summary of overall trial results' as most important. Themes such as reassurance and setting results in context were identified as contributing to participants' decisions around ranking. 'A thank you for your contribution to the study' was ranked the least important. Delivery by post was the preferred mode of receiving results, with receiving a hard copy of results cited as helpful to refer back to. Conclusion: Our findings provide insight into what information trial participants deem as important when receiving trial results and how they would like results delivered. Involving patients during development of trial results to be communicated to participants could help to ensure that the right information is delivered in the right way. Patient or Public Contribution: Public partners were involved in focussed aspects of study conduct. [ABSTRACT FROM AUTHOR]

Background: Despite the established benefits of Advance Care Planning (ACP), engagement remains low in British Columbia. Since 2016, a growing number of community‐based nonprofits have offered ACP education. To date, no study has focused on the perspectives of nonprofits on ACP in British Columbia. Objective: This study aimed to identify barriers and facilitating actions to ACP as perceived by British Columbian nonprofits. Design: A mixed‐methods design was used. Data were collected through online surveys and telephone interviews. Setting and Participants: Staff and volunteers from British Columbian nonprofits that are providing or interested in providing public education on ACP were recruited for this study. Results: The lack of public awareness of ACP, the emotional difficulty of the conversation, the complicated ACP process, the belief that ACP is synonymous with completing a medical order form, the challenge of introducing ACP in different cultural contexts and the siloed approach to ACP education were rated as the most important barriers to ACP engagement. The most important facilitating actions were developing clear messages, improving ACP literacy, reframing ACP as part of life planning, simplifying ACP documentation and transfer, integrating ACP conversations into clinical practice and better collaboration between the health system and nonprofits. Discussion: This study identifies numerous opportunities to improve ACP engagement in British Columbia from a community lens. To maximize ACP engagement, community‐led ACP education should be offered in coordination with the health system. Conclusion: Community‐led ACP education as well as collaboration and consultation with nonprofits are part of the solution to the low ACP engagement in British Columbia. Public Contribution: Study participants, including staff and volunteers at nonprofits, are members of the public. [ABSTRACT FROM AUTHOR]

Background: Our study aimed to evaluate to what extent Zero2 Expo's 'Birthing a Better Future', a co‐created multimedia exhibition, was effective in raising awareness on the importance of the first 1001 days of life and explore what refinements would help to optimize the impact of future exhibitions. Methods: We conducted a mixed‐methods evaluation of the exhibition delivered in the John Radcliffe Hospital, Oxford. Through convenience sampling, 14 participants were selected to participate in 12 structured interviews and 19 participants completed a questionnaire. Interviews were thematically analysed alongside quantitative analysis of questionnaire responses through Likert scales. Results: The majority (78.6%, n = 11/14) of participants who completed the questionnaire either agreed or strongly agreed that the exhibition raised their awareness about the first 1001 days of life. This was supported by the analysis of interviews. The use of art was found to provoke an emotional engagement from participants. Participants felt that the length of the written pieces and location of the exhibition were important factors for designers to consider in future exhibitions. Conclusion: This study demonstrated that multimedia exhibitions, combining science with art, may be an effective way to raise awareness of public health messages. Engaging with key stakeholders will be an essential step in order to improve future public health exhibitions. Public Contribution: When designing the study, the public reviewed the study tools, which were refined based on their feedback. At every phase of the study, members of the public who are artists co‐created the exhibition content. [ABSTRACT FROM AUTHOR]

Background: Patient representatives (PRs) have been involved for decades in health‐care development, and their participation is increasingly sought in health‐care working groups (HCWGs) on every level. However, information on how the role could be further developed and teamwork improved remains sparse. Objective: To explore the role of patient representatives in clinical practice guideline (CPG) monitoring groups, to describe their contributions and identify possibilities of improvement. Design: Qualitative design using semi‐structured interviews analysed by content analysis. Setting and participants: Interviews were conducted with 11 PRs, 13 registered nurses, and 9 physicians, all members of national committees monitoring CPGs for cancer in Sweden. Results: Most participants considered the PR role important but mentioned several problems. PRs' contributions were hampered by uncertainties about their role, the low expectations of other group members and their sense that their contributions were often disregarded. Some professionals questioned whether PRs were truly representative and said some topics could not be discussed with PRs present. Conclusion: This study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care. Patient or public contribution: PRs were information givers in data collection. [ABSTRACT FROM AUTHOR]

Context: Partnership between patients and health‐care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. Objective: To co‐construct a tool for measuring the degree of partnership between patients and HCPs. Design: The CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co‐construct the tool; (3) assess face and content validity from patients' and HCPs' viewpoints; and (4) assess the usability of the tool and explore its measurement performance. Results: The CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise. Assessment of the tool's usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity. Conclusions: The CADICEE tool is developed in co‐construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health‐care settings. Patient or Public Contribution: Patients were involved in determining the importance of constructing this questionnaire. They co‐constructed it, pre‐tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Patients are expected to participate in the hospital discharge process, assume self‐management after discharge and communicate relevant information to their general practitioner; however, patients report that they are not being sufficiently empowered to take on these responsibilities. The aim of this study was to explore and understand the discharge process with a focus on medicines communication, from the patient perspective. Methods: Patients were included at a hospital ward, observed during health‐care personnel encounters on the day of discharge and interviewed 1‐2 weeks after discharge. A process analysis was performed, and a content analysis combined data from observations and data from patient interviews focusing on medicines communication in the discharge process. Results: A total of 9 patients were observed on the day of discharge, equalling 67.5 hours of observations. The analysis resulted in the following themes: (a) the observed discharge process; (b) patient initiatives; and (c) the patient role. The medicines communication in the discharge process appeared unstructured. Various patient preferences and needs were revealed. The elements of the best practice structured discharge conversation were observed; however, some patients did not have a discharge conversation at all. Conclusions: The study contributes to a broader understanding of the discharge process, how patients experience it, including their role. It is evident that the discharge process is not always tailored to meet the patients' needs. More focus on early patient involvement and communication, in order to better prepare patients for self‐management of their medications, is important for their health outcomes. [ABSTRACT FROM AUTHOR]

Background: Understanding peoples' evaluations of their health care is important to ensure appropriate health‐care services. Objectives: To understand what factors influence peoples' satisfaction with care and how interpersonal trust is established between doctors and cancer patients in Germany. Design: A narrative interview study that included women with a diagnosis of breast cancer and men with a diagnosis of prostate cancer. A question‐focused analysis was conducted. Setting and participants: Interviewees were sought across Germany through self‐help organizations, clinics, rehabilitation facilities, physicians and other health‐care professionals, in order to develop modules on experiencing cancer for the website krankheitserfahrungen.de (illness experiences.de). Results: Satisfaction was related to the perception of having a knowledgeable and trusted physician. Trust was developed through particular interactions in which 'medical expertise' and 'humaneness' were enacted by physicians. Humaneness represents the ability of physicians to personalize medical expertise and thereby to convey working in the individual's best interest and to treat the patient as an individual and unique human being. This was fostered through contextual and relational factors including among others setting, time, information transfer, respect, availability, profoundness, sensitivity and understanding. Conclusion: It was the ability to make oneself known to and know the patient in particular ways that allowed for satisfying care experiences by establishing interpersonal trust. This suggests the importance of conceptualizing the doctor‐patient relationship as a fundamentally reciprocal human interaction of caregiving and care‐receiving. At the core of the satisfying care experiences lies a doctor‐patient relationship with a profoundly humane quality. [ABSTRACT FROM AUTHOR]