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Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: This study examines the perceptions of the Australian public canvassed in 2021 during the COVID‐19 pandemic about their health system compared to four previous surveys (2008, 2010, 2012 and 2018). Methods: In 2021, a nationwide online survey was conducted with a representative sample of Australians (N = 5100) recruited via market research panels. The results were compared to previous nationwide Australian survey samples from 2018 (N = 1024), 2012 (N = 1200), 2010 (N = 1201) and 2008 (N = 1146). The survey included questions consistent with previous polls regarding self‐reported health status and overall opinions of, and confidence in, the Australian health system. Results: There was an increase in the proportion of respondents reporting positive perceptions at each survey between 2008 and 2021, with a significantly higher proportion of respondents expressing a more positive view of the Australian healthcare system in 2021 compared to previous years (χ2(8, N = 9645) = 487.63, p < 0.001). In 2021, over two‐thirds of respondents (n = 3949/5100, 77.4%) reported that following the COVID‐19 pandemic, their confidence in the Australian healthcare system had either remained the same (n = 2433/5100, 47.7%) or increased (n = 1516/5100, 29.7%). Overall, respondents living in regional or remote regions, younger Australians (< 45 years) and women held less positive views in relation to the system. In 2021, the most frequently identified area for urgent improvement was the need for more healthcare workers (n = 1350/3576, 37.8%), an area of concern particularly for Australians residing in regional or remote areas (n = 590/1385, 42.6%). Conclusions: Irrespective of disruptions to the Australian healthcare system caused by the COVID‐19 pandemic, Australians' perceptions of their healthcare system were positive in 2021. However, concerns were raised about inadequate workforce capacity and the cost of healthcare, with differences identified by age groups and geographical location. Patient or Public Contribution: Health consumer representatives from the Consumers Health Forum of Australia contributed to the co‐design, deployment, analysis and interpretation of the results of this survey. J.A. and L.W. from the Consumers Health Forum of Australia contributed to the development of the paper. [ABSTRACT FROM AUTHOR]

Background: Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. Methods: Using Q‐methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow‐up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by‐person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. Results: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision‐making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. Conclusions: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. Patient or Public Contribution: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications. [ABSTRACT FROM AUTHOR]

Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]

Background: The global population is ageing rapidly and there is a need for strategies to promote health and wellbeing among older adults. Nutrition knowledge is a key predictor of dietary intake; therefore, effective educational programmes are urgently required to rectify poor dietary patterns. Digital health technologies provide a viable option for delivering nutrition education that is cost‐effective and widely accessible. However, few technologies have been developed to meet the unique needs and preferences of older adults. Objective: The aim of this study was to explore technology use among older adults and qualitatively determine the content needs and design preferences for an online nutrition education resource tailored to older adult consumers in Australia. Methods: Twenty adult participants aged 55 years and older (95% female) participated in one of four 2‐h participatory design workshops. In each workshop, prompted discussion questions were used to explore participants' technology use and preferences and to explore content needs and design preferences for an online nutrition education resource specific to older adults. Results: All participants were regularly using a range of different devices (e.g., smartphones, tablets and computers) and reported being comfortable doing so. Participants wanted a website that provided general nutrition information, practical advice and recipes. To enhance engagement, they sought a personalised resource that could be adjusted to suit their needs, included up‐to‐date information and allowed for easy sharing with others by exporting information as a PDF. Conclusions: Participatory design methods generate new knowledge for designing and tailoring digital health technologies to be appropriate and useful for the target audience. Specifically, older adults seek an online resource that has large and simple fonts with clear categories, providing them with practical advice and general nutrition information that can be personalised to suit their own needs and health concerns, with the option to export and print information into a paper‐based format. Patient or Public Contribution: Older adults actively participated in the development and evaluation process to generate ideas about potential features, functionalities, uses and practicalities of an online nutrition education resource. [ABSTRACT FROM AUTHOR]

Background: Public involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood. Aim: This study aimed to describe how we implemented public involvement, reflect on process and effects in a large‐scale multi‐site research study and present learning for future involvement practice. Method: We recorded public involvement roles and activities throughout the study and compared these to our original public involvement plan included in our project proposal. We held a group interview with study co‐applicants to explore their experiences, transcribed the recorded discussion and conducted thematic analysis. We synthesized the findings to develop recommendations for future practice. Results: Public contributors' activities went beyond strategic study planning and management to include active involvement in data collection, analysis and dissemination. They attended management, scrutiny, planning and task meetings. They also facilitated public involvement through annual planning and review sessions, conducted a Public Involvement audit and coordinated public and patient input to stakeholder discussions at key study stages. Group interview respondents said that involvement exceeded their expectations. They identified effects such as changes to patient recruitment, terminology clarification and extra dissemination activities. They identified factors enabling effective involvement including team and leader commitment, named support contact, building relationships and demonstrating equality and public contributors being confident to challenge and flexible to meet researchers' timescales and work patterns. There were challenges matching resources to roles and questions about the risk of over‐professionalizing public contributors. Conclusion: We extended our planned approach to public involvement and identified benefits to the research process that were both specific and general. We identified good practice to support effective public involvement in health services research that study teams should consider in planning and undertaking research. Public Contribution: This paper was co‐conceived, co‐planned and co‐authored by public contributors to contribute research evidence, based on their experiences of active involvement in the design, implementation and dissemination of a major health services research study. [ABSTRACT FROM AUTHOR]

Introduction: Approximately 20% of people with a long‐term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major depressive disorder. However, there is currently no targeted psychological support for people with LTCs also experiencing SUBD. Online peer support is accessible, inexpensive and scalable, and might offer a way of bridging the gap in psychosocial care for LTC patients. This article explores the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design. Methods: Through a co‐produced participatory approach, online focus groups were completed with people with lived experience of LTCs. Focus groups were audio recorded and transcribed verbatim. Reflexive thematic analysis (TA) was conducted adopting a critical‐realist approach and an inductive analysis methodology that sought to follow participants' priorities and concerns. Results: Ten people with a range of LTCs participated across three online focus groups, lasting an average of 95 (±10.1) min. The mean age was 57 (±11.4) years and 60% of participants identified as female. The three key emerging themes were: (1) relationship between self and outside world; (2) past experiences of peer support; and (3) philosophy and vision of peer support. Adults living with LTCs shared their past experiences of peer support and explored their perspectives on how future online peer support platforms may support their psychosocial needs. Conclusion: Despite the negative impact(s) of having a long‐term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co‐produced and carefully designed to ensure they feel safe and not commercialised or prescriptive. Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms. Patient or Public Contribution: This work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co‐produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer‐to‐peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental–physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co‐produced study documents, topic guides, and informed key decision‐making processes. Finally, our co‐investigator with lived experience (E. A.F.) undertook the analysis and write‐up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs. [ABSTRACT FROM AUTHOR]

Objectives: The global coronavirus disease 2019 (COVID‐19) pandemic has not been well controlled, and vaccination could be an effective way to prevent this pandemic. By accommodating attribute nonattendance (ANA) in a discrete choice experiment (DCE), this paper aimed to examine Chinese public preferences and willingness to pay (WTP) for COVID‐19 vaccine attributes, especially the influence of ANA on the estimated results. Methods: A DCE was designed with four attributes: effectiveness, protection period, adverse reactions and price. A random parameter logit model with an error component (RPL‐EC) was used to analyse the heterogeneity of respondents' preferences for COVID‐19 vaccine attributes. Two equality constraint latent class (ECLC) models were used to consider the influence of ANA on the estimated results in which the ECLC‐homogeneity model considered only ANA and the ECLC‐heterogeneity model considered both ANA and preference heterogeneity. Results: Data from 1,576 samples were included in the analyses. Effectiveness had the highest relative importance, followed by adverse reactions and protection period, which were determined by the attributes and levels presented in this study. The ECLC‐heterogeneity model improved the goodness of fit of the model and obtained a lower probability of ANA. In the ECLC‐heterogeneity model, only a small number of respondents (29.09%) considered all attributes, and price was the most easily ignored attribute (64.23%). Compared with the RPL‐EC model, the ECLC‐homogeneity model obtained lower WTPs for COVID‐19 vaccine attributes, and the ECLC‐heterogeneity model obtained mixed WTP results. In the ECLC‐heterogeneity model, preference group 1 obtained higher WTPs, and preference groups 2 and 3 obtained lower WTPs. Conclusions: The RPL‐EC, ECLC‐homogeneity and ECLC‐heterogeneity models obtained inconsistent WTPs for COVID‐19 vaccine attributes. The study found that the results of the ECLC‐heterogeneity model considering both ANA and preference heterogeneity may be more plausible because ANA and low preference may be confused in the ECLC‐homogeneity model and the RPL‐EC model. The results showed that the probability of ANA was still high in the ECLC‐heterogeneity model, although it was lower than that in the ECLC‐homogeneity model. Therefore, in future research on DCE (such as the field of vaccines), ANA should be considered as an essential issue. Public Contribution: Chinese adults from 31 provinces in mainland China participated in the study. All participants completed the COVID‐19 vaccine choice questions generated through the DCE design. [ABSTRACT FROM AUTHOR]

Introduction: Health literacy (HL) refers to individuals' abilities to process and use health information to promote health. This study aimed to develop the first HL measurement tool for the Chinese Hong Kong population. Methods: A two‐phase methodology was adopted. In Phase I, evidence synthesis with a deductive method was conducted to formulate the item list from the literature. In Phase II, a modified e‐Delphi survey was conducted among stakeholders (i.e., healthcare providers and healthcare consumers) to confirm the content validity of the item list. The stakeholders were invited to rate the relevance of each draft item on a 4‐point scale and provide suggestions for revisions, removal or adding new items. Results: In Phase I, a total of 34 items covering functional, interactive and critical HL were generated. In Phase II, to obtain a balanced view from experts and laypeople, healthcare professionals (n = 12) and consumers (n = 12) were invited to participate in the Delphi panel. The response rates of the three rounds were 100%. After the third round, the consensus was reached for 31 items, and no further comments for adding or revising items were received. All items exhibited excellent content validity (item content validity index: 0.79–1.00; K*: 0.74–1.00). Conclusions: A Health Literacy Scale for Hong Kong was developed. Compared with existing HL scales, the scale fully operationalized the skills involved in functional, interactive and critical HL. The Delphi study shows evidence supporting the high content validity of all items in the scale. In future studies, these items should undergo rigorous testing to examine their psychometric properties in our target population groups. By illuminating the details in the development process, this paper provides a deeper understanding of the scale's scope and limitations for others who are interested in using this tool. Patient or Public Contribution: Public as healthcare consumers, in addition to healthcare providers, were involved in developing a new HL scale for this study. The input from the public contributed to examining the scale's content validity by judging whether all items reflected the skills that they need to find and use health‐related information in their daily life. [ABSTRACT FROM AUTHOR]

Introduction: To increase the likelihood of research responding to societal needs, intermediary structures such as Science Shops are being created. Science Shops respond to research needs identified and prioritized through participatory processes involving civil society. However, these are not mainstream structures, and most research needs addressed by the scientific community are not defined by a diversity of stakeholders (including citizens) but are mostly prioritized by researchers and funders. Literature shows this often leads to bias between the research topics investigated and the research needs of other relevant stakeholders. This study analyses how 14 Science Shops contribute to decreasing bias in health research agenda setting. Methodology: We compare the research priorities identified through participatory processes by the Science Shops, which participated in the European Union‐funded project InSPIRES (2017–2021), to the available research addressed in the literature (identified in Web of Science), which we use as a proxy for current research priorities. Results: Science Shop projects contributed to decreasing the existing bias in health research agenda setting: (1) between drug and nondrug treatments and (2) between clinical trials of treatments for illnesses affecting high‐income versus middle‐ and low‐income countries, which leads to a lack of local strategies for high disease burdens in nonhigh‐income regions. Conclusion: This study provides the first evidence of Science Shops' effectiveness in addressing current biases in health research agenda setting. We conclude they could play a key role in shaping local, national and international research policies. [ABSTRACT FROM AUTHOR]

Background: Neurofibromatosis type I (NF1) is a rare genetic disorder, associated with some physical symptoms including spots and tiny bumps on the skin, and internal organ involvement. People suffering from neurofibromatosis face various challenges in their daily lives. However, there is little understanding on how patients deal with neurofibromatosis. This study aimed to investigate the life challenges of patients with NF1. Methods: This qualitative study was performed by implementing a grounded theory with the cooperation of the Society for Neurofibromatosis Patients over the course of 15 months in 2019 across 4 provinces in Iran. Twenty‐four patients with NF1 were interviewed. An analysis was performed using the constant comparative method. Findings: The results of the analyses indicated that the major concern of the NF1 patients was feelings of failure and falling behind in life. In the face of failure in life in such a context, patients used the main strategy of "unsuccessful struggle to escape" the disease and its complications, which was represented itself in the forms of 'hopelessness and impatience', 'suicidal thoughts and unsuccessful suicide attempts', 'isolation and seclusion', 'expressing complaints and grievances to God', 'hiding the disease' and 'hopelessness and refusing to receive care'. The implementation of such strategies helped patients reduce tension and achieve a temporary, though vulnerable and fragile, sense of relief and peace. Conclusion: Given an unfavourable life condition, NF1 patients turned to a harmful passive strategy in the face of the challenges posed by the disease. Patient or Public Contribution: Public contributors were active partners throughout, and co‐authored the paper. [ABSTRACT FROM AUTHOR]

Background: Bowel cancer screening using faecal immunochemical testing is provided in the United Kingdom with the aim of reducing mortality from colorectal cancer. However, there are low participant rates among ethnic minorities across the United Kingdom. Faith‐placed interventions have the potential to improve screening rates among such populations, but studies examining their effectiveness are scarce. Methods: We delivered a presentation on bowel cancer screening to 204 Muslims in seven mosques in East London (intervention group). All participants completed a questionnaire regarding attitudes, perceptions and knowledge of bowel cancer screening before and after the presentation. Concurrently, we administered the questionnaire to 72 subjects attending a mosque that did not receive the presentation (comparison group). Results: The intervention group showed a greater willingness to do the test (90% vs. 67%, p < 0.001) and to recommend it to others (96% vs. 74%, p < 0.001), ability to complete the test by themselves (94% vs. 56%, p < 0.001) and confidence in noticing symptoms (78% vs. 32%, p < 0.001) after the presentation compared to before. There was a significant difference between the intervention group post‐presentation and the comparison group on intention to do the test (90% vs. 79%, p = 0.02), recommending it to others (96% vs. 83%, p < 0.001), and confidence in their ability to complete the test by themselves (94% vs. 63%, p < 0.001). Conclusion: A culture‐sensitive, faith‐placed health education intervention delivered in mosques can substantially improve knowledge of bowel cancer screening and increase the intention to participate in the screening programme. Patient or Public Contribution: The intervention presentation was developed using insights from four public involvement sessions with four to six members representative of the East London Muslim community. The sessions sought attendees' thoughts on appropriate ways to approach the intervention design for their community and asked for their views on the acceptability, appropriateness of messaging, format/design and likely impact of the presentation. Their views were then utilised to improve the presentation. [ABSTRACT FROM AUTHOR]

Background: Current research has identified how ethnic minority women experience poorer health outcomes during the perinatal period. In the United Kingdom, specialist perinatal mental health services provide mental health treatment for women throughout the perinatal period. Service users have previously highlighted that perinatal services are hard to access and lack cultural sensitivity, whereas healthcare professionals have described limited opportunities and resources for developing cultural competency. Objectives: We explored the experiences of ethnic minority women with National Health Service (NHS) specialist perinatal teams and identified what culturally sensitive perinatal mental health care means to this group. Design: Individual semi‐structured interviews were conducted, and an interpretative phenomenological analysis framework was used to analyse the interview transcripts. Setting and Participants: Participants were recruited from NHS specialist perinatal teams and online via social media. Results: Six women were interviewed. Four group experiential themes central to the experiences of participants emerged: (1) strengthening community networks and peer support; (2) valuing cultural curiosity; (3) making sense of how culture, ethnicity, race and racism impact mental health; and (4) tailoring interventions to ethnic minority women and their families. Discussion and Conclusions: The findings capture how ethnic minority women experience specialist perinatal teams and offer insights into practising culturally sensitive care. Perinatal mental health professionals can support ethnic minority women by strengthening their access to community resources and peer support; being curious about their culture; helping them to make sense of how culture, ethnicity, race and mental health interact; and applying cultural and practical adaptations to interventions. Patient or Public Contribution: A Lived Experience Advisory Group (LEAG) of women from ethnic minority groups contributed to the design and conduct of this study. The LEAG had lived experience of perinatal mental health conditions and accessing specialist perinatal teams. The LEAG chose to co‐produce specific aspects of the research they felt fit with their skills and available time throughout five group sessions. These aspects included developing the interview topic guide, a structure for debriefing participants and advising on the social media recruitment strategy. [ABSTRACT FROM AUTHOR]

Objectives: Providing personal demographic information is routine practice in the United States, and yet, little is known about the impacts of this process. This study aims to examine the experiences and perspectives of Multiracial/ethnic adults in the United States when disclosing racial/ethnic identity. Methods: Seventeen semistructured interviews were conducted with adults identifying as Multiracial/ethnic. The Multiracial/ethnic identities of participants included Black or African American and White; Black or African American, American Indian or Alaska Native (AI/AN) and Hispanic or Latino; Black or African American and Hispanic or Latino; Black or African American and AI/AN; AI/AN and White and Asian, Native Hawaiian or Pacific Islander and White. Multiple participants reported identifying with multiple ethnic groups for any single broad category. Three identified as sexual minorities. Nine were Millennials; six were Gen X; one was Gen Z; one was Baby Boomer. Qualitative data were analyzed using staged hybrid inductive–deductive thematic analysis. Results: Disclosure of racial and ethnic identities presents a unique stressor for Multiracial/ethnic populations due to methods used to obtain data, perceived mismatch of identity and phenotype and exposure to prejudice. Social norms, constructs and movements impact the categories that a Multiracial/ethnic person indicates to external parties. Conclusions: The stress and negative feelings that Multiracial/ethnic adults face when identifying their race/ethnicity underscore the broader implications of standard demographic questions on feelings of inclusivity and visibility within a population. Patient or Public Contribution: Gathering data on individuals' racial and ethnic backgrounds is a standard practice, and yet, it can pose challenges for those who identify with multiple groups or do not see their identities reflected in the options provided. Such individuals may feel excluded or experience unfair treatment when disclosing their identity, leading to significant stress. As the frequency of this data collection increases, it is essential that the questions are posed empathetically and equitably, with a strong commitment to enhancing inclusivity throughout the process. [ABSTRACT FROM AUTHOR]

Background: This study investigated healthcare access and quality for people who are transgender and gender‐diverse (PTGD) in Saskatchewan (SK), Canada, to inform a larger project that was piloting two peer health navigators for PTGD. Methods: Two online focus groups were held. Nineteen participants were recruited to represent a broad range in age, gender and location in SK. Transcripts of the focus groups were analyzed using a thematic approach. Results: The core theme that was identified was participants' desire for culturally safe healthcare. This core theme had two component themes: (1) systemic healthcare factors and (2) individual healthcare provider (HCP) factors. The healthcare system primarily acted as a barrier to culturally safe healthcare. HCPs could be either barriers or facilitators of culturally safe care; however, negative experiences outweighed positive ones. Conclusions: PTGD in SK face discrimination, with delays and barriers to care at all levels of the healthcare system. Peer health navigators can address some of these discrepancies; however, greater support is required for PTGD to be able to access culturally safe healthcare. Patient or Public Contribution: People with lived experience/PTGD were involved in all stages of this project. They were included on the team as community researchers and co‐developed the research project, conducted the focus groups, participated in the analyses and are co‐authors. As well, both navigators and all the participants in the focus groups were also PTGD. [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: Childhood obesity has been shown to impair psychological health. However, psychological factors are often overlooked in both research evaluations and treatment interventions, and children's perspectives on managing obesity are underexplored. Neglecting psychosocial factors might undermine interventions. This research explored the psychological beliefs, expectations and experiences of children living with obesity (range 7–13) and attending a weight management programme (WMP). Methods: Thirty‐four participants (19 females, 15 males, average age 9.5 years) completed a semistructured interview. Recorded interviews were transcribed verbatim and analysed using thematic analysis. Results: Four overarching themes were developed: (1) defining health and self‐recognition; (2) external influence; feedback, stigma and comparison; (3) recognising emotions and (4) future expectations: obesity is a reality. These themes interact to influence the children's psychosocial status. Conclusions: This study highlights a range of psychosocial and emotional difficulties that children living with obesity experience and suggests that these remain regardless of their attendance at a WMP. Interventions for children living with obesity should address psychosocial factors, including stress management, peer victimisation and handling feedback from others. Patient or Public Contribution: As proposed by the two young people acting as patient and public involvement and engagement representatives, the utilisation of scrapbooks as a preinterview tool was particularly helpful in aiding discussion during the interviews. This innovative approach could be considered a valuable methodological technique for investigating sensitive topics with children in future research. [ABSTRACT FROM AUTHOR]

Introduction: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one‐time honorarium, salary) and amount. Further, broad‐based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation. Methods: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self‐identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open‐text comments in addition to menu‐based and scaled response options. Basic frequencies were performed for all questions and open‐text comments were analyzed through inductive qualitative content analysis. Results: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open‐text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships. Conclusions: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts. Patient Contribution: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co‐authors of this manuscript. The survey was co‐designed and pilot tested with patient partners and survey participants were patient partners. [ABSTRACT FROM AUTHOR]

Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0–16 years with intellectual disability admitted to two tertiary state‐wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, Setting and Participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi‐structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability‐specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child‐centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and Public Contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews. [ABSTRACT FROM AUTHOR]

Background: Poor quality sleep in hospitals may be problematic for patients, negatively impacting their recovery and wellbeing. This project aimed to investigate the effectiveness of codesign in addressing key issues affecting sleep disruption in the healthcare setting. Methods: Codesign with patients, staff and consumer representatives was conducted in an acute metropolitan tertiary public hospital in Sydney, Australia. Through a four‐stage process, a multimodal intervention to address and reduce the impact of sleep disruptions among hospital inpatients was created. Pre‐ and post‐intervention evaluation was used to determine changes in patient‐reported sleep disruption. Results: 'The HUSH Project' (Help Us Support Healing) intervention resulted from the codesign process, which included the provision of HUSH Sleep Packs (with earplugs, eye masks and herbal tea), patient information resources, and ward‐based Sleep Champions. Survey data from 210 patients revealed a statistically significant decrease in patient‐reported noise disturbances for patients in shared rooms following the 4‐week intervention period of the HUSH program. Conclusion: The HUSH Project demonstrated that a novel multimodal intervention may be valuable in reducing sleep disruption in hospitals. These findings also indicate the benefits of using codesign methodology to support improvement projects that seek to enhance patient experiences of care. Patient or Public Contribution: This project utilised codesign methodology, which involved significant contributions from patients and consumer representatives, from research conceptualisation into intervention design, implementation and project evaluation. [ABSTRACT FROM AUTHOR]

Background and Objective: To improve quality, child and adolescent mental health services (CAMHS) are expected to quantify families' views on healthcare with user satisfaction measures. As little is known about what influences satisfaction in CAMHS, this study aimed to examine predictors of adolescents' and parents' user satisfaction. Methods: Data from 231 adolescents and 495 parents in treatment at an outpatient clinic who returned a user satisfaction measure, the Experience of Service Questionnaire (ESQ), was analyzed. Registry data on background, clinical and service characteristics were predictors for the ESQ factors general satisfaction, satisfaction with care and satisfaction with environment. Results: In regression models, satisfaction with care for adolescents (r2 =.12) was significant and was predicted by low parent‐self‐reported mental health burden and low clinician‐rated overall symptom burden at intake. For parents, regression models for general satisfaction (r2 =.07), satisfaction with care (r2 =.06) and satisfaction with environment (r2 =.08) were significant. Parents general satisfaction was predicted by higher levels of hyperactivity, less family stress and longer travelling distances to the service. Satisfaction with care for parents was predicted by higher levels of hyperactivity at intake and longer travelling distances. Satisfaction with environment for parents was more likely if the adolescents was a boy, with low levels of family stress and longer travelling distances. Conclusion: Predictors for adolescent and parent user satisfaction in CAMHS differ. Hence, to improve quality CAMHS should enhance focus on collaborative practice with parents, and person‐centred care for adolescents with moderate to severe mental health illness. Patient or Public Contribution: Representatives from the hospitals' youth panel and the non‐governmental organization called The Change Factory have been consulted regarding study design and results. [ABSTRACT FROM AUTHOR]

Introduction: Head and neck cancer (HNC) is the eighth most common cancer in the United Kingdom. Survival rates improve when the cancer is diagnosed at an early stage, highlighting a key need to identify at‐risk patients. This study aimed to explore opportunistic HNC identification and referral by community pharmacists (CPs) using a symptom‐based risk assessment calculator, from the perspective of patients with a diagnosis of HNC. Methods: Purposive sampling was used to recruit patients from the HNC pathway in three large teaching hospitals in Northern England. Qualitative methodology was used to collect data through an iterative series of semistructured telephone interviews. Framework analysis was utilised to identify key themes. Results: Four main themes were constructed through the analytic process: (1) HNC presentation and seeking help; (2) the role of the CP; (3) public perception of HNC and (4) the role of a symptom‐based risk calculator. Participants agreed that CPs could play a role in the identification and referral of suspected HNCs, but there were concerns about access as patients frequently only encounter the medicine counter assistant when they visit the pharmacy. HNC symptoms are frequently attributed to common or minor conditions initially and therefore considered not urgent, leading to delays in seeking help. While there is public promotion for some cancers, there is little known about HNC. Early presentation of HNC can be quite variable, therefore raising awareness would help. The use of a symptom‐based risk calculator was considered beneficial if it enabled earlier referral and diagnosis. Participants suggested that it would also be useful if the public were made aware of it and could self‐assess their symptoms. Conclusion: In principle, CPs could play a role in the identification and referral of HNC, but there was uncertainty as to how the intervention would work. Future research is needed to develop an intervention that would facilitate earlier identification and referral of HNC while not disrupting CP work and that would promote HNC and the risk calculator more widely. Patient or Public Contribution: Patient and public involvement and engagement (PPIE) was integrated throughout the project. Initially, the proposal was discussed during a Cancer Head and Neck Group Experience (CHANGE) PPIE meeting. CHANGE was set up to support HNC research in 2018. The group is composed of seven members (four female, three male) with an age range of 50–71 years, who were diagnosed at Sunderland Royal Hospital. A patient representative from the University of Sunderland PPIE group and a trustee of the Northern HNC Charity were recruited as co‐applicants. They attended project management group meetings and reviewed patient‐facing documentation. [ABSTRACT FROM AUTHOR]

Background: Patients' treatment decisions may be influenced by the ways in which treatment options are presented. There is little evidence on how patients with advanced cancer choose preferences for advance directives (ADs) in China. Informed by behavioural economics, we assess whether end‐of‐life (EOL) cancer patients held deep‐seated preferences for their health care and whether default options and order effects influenced their decision‐making. Methods: We collected data on 179 advanced cancer patients who were randomly assigned to complete one of the four types of ADs: comfort‐oriented care (CC) AD (comfort default AD); a life extension (LE)‐oriented care option (LE default AD); CC (standard CC AD) and LE‐oriented (standard LE AD). Analysis of variance test was used. Results: In terms of the general goal of care, 32.6% of patients in the comfort default AD group retained the comfort‐oriented choice, twice as many as in the standard CC group without default options. Order effect was significant in only two individual‐specific palliative care choices. Most patients (65.9%) appointed their children to make EOL care decisions, but patients choosing the CC goal were twice as likely to ask their family members to adhere to their choices than patients who chose the LE goal. Conclusion: Patients with advanced cancer did not hold deep‐seated preferences for EOL care. Default options shaped decisions between CC and LE‐oriented care. Order effect only shaped decisions in some specific treatment targets. The structure of ADs matters and influence different treatment outcomes, including the role of palliative care. Patient or Public Contribution: Between August and November 2018, from 640 cancer hospital medical records fitting the selection criteria at a 3A level hospital in Shandong Province, we randomly selected 188 terminal EOL advanced cancer patients using a random generator programme to ensure all eligible patients had an equal chance of selection. Each respondent completes one of the four AD surveys. While respondents might require support in making their healthcare choices, they were informed about the purpose of our research study, and that their survey choices would not affect their actual treatment plan. Patients who did not agree to participate were not surveyed. [ABSTRACT FROM AUTHOR]

Objectives: Peer‐to‐peer communication approaches have been previously described as the 'power of personal referral'. Rather than relying on official channels of information, peer‐to‐peer communication may have a role in supporting changes in understanding and possibly behaviours. However, in emergency or pandemic situations, there is currently limited understanding of whether community members feel comfortable speaking about their vaccine experiences or advocating to others. This study explored the perceptions of COVID‐19 vaccinated and unvaccinated Australian adults regarding their preferences and opinions about peer‐peer communication and other vaccine communication strategies. Study Design: Qualitative interview research. Methods: In‐depth interviews were conducted in September 2021 with 41 members of the Australian community. Thirty‐three participants self‐identified as being vaccinated against COVID‐19, while the remainder were not vaccinated at the time or did not intend on receiving a COVID vaccine. Results: Amongst those who were vaccinated, participants spoke about being willing to promote the vaccine and correct misinformation and felt empowered following their vaccination. They highlighted the importance of peer‐to‐peer communication and community messaging, expressing the need for both strategies in an immunisation promotional campaign, with a slight emphasis on the persuasive power of communication between family and friends. However, those who were unvaccinated tended to dismiss the role of community messaging, commenting on a desire not to be like one of the many who listened to the advice of others. Conclusion: During emergency situations, governments and other relevant community organisations should consider harnessing peer‐to‐peer communication amongst motivated individuals as a health communication intervention. However further work is needed to understand the support that this constituent‐involving strategy requires. Patient or Public Contribution: Participants were invited to participate through a series of online promotional pathways including emails and social media posts. Those who completed the expression of interest and met the study criteria were contacted and sent the full study participant information documentation. A time for a 30 min semi‐structured interview was set and provided with a $50 gift voucher at the conclusion. [ABSTRACT FROM AUTHOR]

Introduction: Sexually transmitted infections (STIs) and human immunodeficiency virus (HIV) disproportionately affect young gay, bisexual and other men who have sex with men (GBMSM) and transgender women of colour. We explored the experiences of community‐based peer navigators ('Community Navigators') who participated in Impact Triad, a bilingual multilevel intervention developed by our community‐based participatory research partnership to reduce STIs and HIV and address social determinants of health (e.g., employment, education, social support and discrimination) among young GBMSM and transgender women of colour. Methods: Individual in‐depth interviews were conducted with 15 Community Navigators who participated in Impact Triad. Themes were identified through constant comparison. Results: Community Navigators' mean age was 31.4 years. Seven were self‐identified as African American/Black, 5 as Latine, 2 as multiracial/multiethnic, 1 as Asian American, 10 as cisgender men, 4 as transgender women and 1 as gender nonbinary. Thirteen themes emerged in three domains: (1) key aspects of the Community Navigator role (e.g., desire to serve as a community resource, the importance of being part of the communities in which one was working, the value of having an official role, being connected to other Community Navigators to problem‐solving and sustaining intervention aspects long‐term); (2) experiences implementing Impact Triad (e.g., engaging community members, meeting prioritized needs, building trust, using social media, increasing awareness and knowledge and challenges related to COVID‐19) and (3) lessons learned for future interventions (e.g., facilitating access to broader resources, building additional skills and increasing interactions among Community Navigators). Conclusion: Interviews identified important learnings about serving as Community Navigators and implementing Impact Triad that can guide future efforts to address STI/HIV disparities and social determinants of health through community‐based peer navigation. Patient or Public Contribution: Throughout this intervention trial, our partnership worked collaboratively with a study‐specific community advisory board (CAB) comprised primarily of young GBMSM and transgender women of colour. Members of this CAB participated in all aspects of the trial including trial design, intervention development, recruitment and retention strategies, data collection and analysis, interpretation of findings and dissemination. [ABSTRACT FROM AUTHOR]

Background: Human papillomavirus (HPV) self‐sampling has shown to be acceptable and feasible across cultures and effective in reaching women who do not participate in regular cervical cancer screening. However, most of these studies have included younger women. There is a lack of knowledge of how older women reason about HPV self‐sampling. Objective: The aim of this study was to describe how women (>60 years old) experience the offering of self‐sampling of HPV, compared to having a sample collected by a healthcare professional. Design and Participants: The study had a qualitative explorative design. Four focus group discussions were conducted with women 60–69 years old (n = 22). Data were analysed using principles of interpretive description. Results: Five themes were identified: self‐sampling—convenient and without pain, lack of knowledge, worries related to HPV self‐sampling, need for information and taking a societal perspective. Conclusion: Women aged >60 years found that HPV self‐sampling was convenient and easy to perform. Further, they stressed the importance of being able to remain in the screening programme in advanced age and that self‐sampling could be a possible solution. This study also revealed a lack of knowledge among women in this age group regarding HPV infection, how the disease is transmitted and its relation to cervical cancer. Public Contribution: Women who had performed HPV self‐sampling participated in the focus group discussion. [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]

Background: Peer support is increasingly recognized as crucial for improving health and psychosocial outcomes in oncological care. The integration of cancer self‐help groups (SHGs) into cancer care facilities has gained importance in recent years. Yet, there is a lack of knowledge of the extent and quality of cooperation between cancer care facilities and SHGs and their integration into routine care. The concept of self‐help friendliness (SHF) provides a feasible instrument for the measurement of cooperation and integration. Methods: A cross‐sectional study across Germany investigates the experiences of 266 leaders of cancer SHGs concerning their cooperation with cancer care facilities based on the criteria for SHF. The participatory study was developed and conducted with representatives of the House of Cancer Self‐Help and the federal associations of cancer self‐help. Results: According to the SHG leaders, about 80% of their members primarily find their way to an SHG via other patients and only less than 50% more or less frequently via hospitals or rehabilitation clinics. The quality of cooperation with cancer centres, hospitals and rehabilitation clinics, however, is rated as good to very good by more than 70% of the respondents. Nine out of 10 quality criteria for SHF are fully or at least partially implemented, the values vary between 53% and 87%. Overall, 58% of the SHG leaders feel well to be very well integrated into care facilities. Conclusions: The results show a positive assessment of the involvement of SHGs in oncological care, but differences between inpatient and outpatient care and low referrals to SHGs are prominent. The concept of SHF is a feasible solution for a systematic and measurable involvement of SHGs. Patient or Public Contribution: The perspectives and insight of patient representatives obtained through qualitative interviews were directly incorporated into this study. Representatives of cancer self‐help organizations were involved in the development of the questionnaire, reviewed it for content and comprehensibility, and further helped to recruit participants. [ABSTRACT FROM AUTHOR]

Introduction: When handover is conducted at the patient's bedside, active patient participation can be encouraged, which may improve the safety and quality of care. There is a need for valid and reliable tools to measure patient perceptions of participation in bedside handover, to ensure the rising number of implementation and improvement efforts are consistently and effectively evaluated. The aim of this study is to systematically develop and evaluate the psychometric properties of a self‐report survey to measure patients' perceptions of participation in bedside handover. Methods: In Phase 1, our team developed a conceptual framework and item pool (n = 130). In Phase 2, content validity was assessed with four health consumers, four nurses and four researchers. Next, 10 current hospital inpatients tested the survey for end‐user satisfaction. In Phase 3, 326 inpatients completed the survey, allowing exploratory factor analysis, reliability analyses and convergent/divergent validity analyses to occur. Results: Phase 1 and 2 resulted in a 42‐item survey. In Phase 3, 321 surveys were available for analysis. Exploratory factor analysis revealed a three‐factor solution, with 24 items, which matched our conceptual framework. The three factors were: 'Conditions for patient participation in bedside handover', 'Level of patient participation in bedside handover' and 'Evaluation of patient participation in bedside handover'. There was strong evidence for factor reliability and validity. Additionally, the correlation between factors was strong. Conclusion: This study furthers our conceptual understanding by showing that nurse facilitating behaviours are a strong precursor for patient participation and perceived handover outcomes, justifying the need for nursing training. A robust survey has been developed to measure patient perceptions of participation in bedside handover, which can effectively evaluate this approach to care. Engaging consumers and nurses as research team members was invaluable in ensuring that the survey is acceptable for end‐users. Patient or Public Contribution: A health consumer and nurse partnered as members of the research team from study inception to dissemination. [ABSTRACT FROM AUTHOR]

Background: Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research. Aim: This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research. Methods: Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi‐structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners. Results: Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two‐way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations. Conclusion: Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way. Patient or Public Contribution: Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of data analysis tools (code book); (6) analysis of qualitative data; and (7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video. [ABSTRACT FROM AUTHOR]

Introduction: This study pertains to the design of a decision aid (DA) to shed light on information and support needs in colorectal cancer screening, with the aim to explore the calling patterns to the Screening of Swedish Colons (SCREESCO) study's helpline. Methods: A cross‐sectional study was conducted with data from documented telephone calls to the SCREESCO study, including individuals, 59–60 years, randomized to colonoscopy or high sensitive faecal immunochemical test (FIT). Results: More than 2000 calls (women 58.5%; colonoscopy 59%) were analysed. Calling patterns: unsubscribing from screening, confirmation of participation, logistical concerns about the screening procedure, counselling, and FIT screening difficulties or in need of a new FIT test. Comorbidity was the most frequent reason for unsubscribing and most of the counselling calls included questions about the FIT test or the colonoscopy. Conclusion: Most of the calls to the helpline seemed to be related to individuals' lack of understanding about the organization of the screening programme and the screening procedure. Therefore, we find it important to further stress the tailoring part in our DA developing process, that is, provide limited information initially, with the possibility of access to more, if desired by the individual, still with respect to the individual's needs, health and digital literacy. Patient and Public Contribution: Individuals representing the public and invited to SCREESCO participated since we analysed their calls to the helpline. The findings will contribute to our continued work with the DA where the public will contribute and participate. [ABSTRACT FROM AUTHOR]

Background: Researchers often stress the necessity and challenge of integrating the positionings of residents, family members and nurses in order to realize each actor's involvement in long‐term dementia care. Yet most studies approach user and family involvement separately. Aim: To explain how productive involvement in care provision is accomplished in triadic relationships between residents, family members and nurses. Methods: An ethnographic study of identity work, conducted between 2014 and 2016 in a Dutch nursing home. Findings: We identify four ideal‐typical identity positionings performed by nurses through daily activities. The findings reveal how their identity positionings were inseparable from those of the residents and family members as they formed triads. Congruent, or 'matching', identity positionings set the stage for productive involvement. Our systematic analysis of participants' identity work shows how—through embedded rights and responsibilities—their positionings inherently shaped and formed the triadic types and degrees of involvement observed within these relationships. Discussion and conclusion: This study both unravels and juxtaposes the interrelatedness of, and differences between, the concepts of user and family involvement. Accordingly, our findings display how residents, family members and nurses—while continuously entangled in triadic relationships—can use their identity positionings to accomplish a variety of involvement activities. To mirror and optimize the implementation of user and family involvement, we propose a rights‐based and relational framework based on our findings. Patient or public contribution: Conversations with and observations of residents; feedback session with the Clients' Council. [ABSTRACT FROM AUTHOR]