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

Introduction: This paper provides a critical reflection from both the researcher and public contributor (PC) perspective on the benefits and the learnings taken from involving PCs in research related to Parkinson's. Approach to Patient and Public Involvement (PPI): This paper reports on how PCs shaped the design and development of the PRIME‐UK research programme study materials through input into information leaflets, consent forms and other patient‐facing documents used across three studies within the PRIME‐UK research programme. The PRIME‐UK research programme is designed to improve the quality of life of people with Parkinson's and this project included three studies: a cross‐sectional study, a randomised control trial and a qualitative study. We captured these impacts using Public Involvement Impact Logs, which provide a framework allowing researchers and PCs to report on the learnings, immediate outcomes and impacts from PPI. For this project, the impact logs enabled us to provide reflections from PCs and researchers on the process of involving 'the public' in Parkinson's research. Findings: This paper builds on existing evidence of the range of benefits and challenges that emerge from working with patients and the public in Parkinson's research; this includes reflecting on the changes made to the study materials and benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research process and that timely communication and the use of face‐to‐face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process. Conclusion: We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement. Public Contribution: Public contributors (PCs) were involved in the design and development of the participant information leaflets, consent forms and other patient‐facing documents used for studies within the PRIME‐UK research programme. In addition, PCs evaluated their involvement using impact logs and co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non‐invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the findings from the qualitative literature to understand how individual, clinical team and organisational factors influence pwMND decisions about these interventions. Methods: The study design was guided by the enhancing transparency in reporting the synthesis of qualitative research (ENTREC) statement. The search of five bibliography databases and an extensive supplementary search strategy identified 27 papers that included qualitative accounts of pwMND, caregivers and healthcare professionals' (HCPs) experiences of making decisions about gastrostomy and ventilation. The findings from each study were included in a thematic synthesis. Findings: Making decisions about interventions is an emotional rather than simply a functional issue for pwMND. The interventions can signal an end to normality, and increasing dependence, where pwMND consider the balance between quality of life and extending survival. Interactions with multiple HCPs and caregivers can influence the process of decision‐making and the decisions made. These interactions contribute to the autonomy pwMND are able to exert during decision‐making. HCPs can both promote and threaten pwMND perceived agency over decisions through how they approach discussions about these interventions. Though there is uncertainty over the timing of interventions, pwMND who agree to interventions report reaching a tipping point where they accept the need for change. Conclusion: Discussion of gastrostomy and ventilation options generate an emotional response in pwMND. Decisions are the consequence of interactions with multiple external agents, including HCPs treading a complex ethical path when trying to improve health outcomes while respecting pwMND right to autonomy. Future decision support interventions that address the emotional response and seek to support autonomy have the potential to enable pwMND to make informed and timely decisions about gastrostomy placement and ventilation. Patient or Public Contribution: The lead author collaborated with several patient and participant involvement (PPI) groups with regards to the conceptualisation and design of this project. Decisions that have been influenced by discussions with multiple PPI panels include widening the scope of decisions about ventilation in addition to gastrostomy placement and the perceptions of all stakeholders involved (i.e., pwMND, caregivers and HCPs). [ABSTRACT FROM AUTHOR]

Introduction: Involving service users in health service design and delivery is considered important to improve the quality of healthcare because it ensures that the delivery of healthcare is adapted to the needs of the users. Co‐production is a process used to involve service users, but multiple papers have highlighted the need for the mechanisms and values guiding co‐production to be more clearly stated. The aim of this paper was to evaluate the mechanisms and values that guided the co‐production approach of the Stories for Change project, which used Public Narrative as part of the co‐design process to create change in National Health Service maternity services. Methods: This study was conducted using a rapid feedback evaluation approach. Semistructured interviews (n = 16) were the main source of data, six of which were maternity service users, with observations (5 h) and documentary analysis also carried out in parallel. RREAL sheets were used for data analysis to organize data based on key topics of interest. Results: This study identified three broad mechanisms and values underpinning the co‐production approach: creating an open and safe space to share ideas, learning how to tell stories using Public Narrative and having service providers who play a key role in strengthening the health system listen to stories compelling them to action. This study identified the main areas for improvement of the Stories for Change project related to recruitment, the inclusion of participants, the co‐design process, the Skills Session and the Learning Event. Conclusion: Our study provided a deeper understanding of the co‐production approach that addresses the need to uncover the mechanism and values underlying co‐production and co‐design approaches. This study expands on the literature pertaining to the influence of storytelling in creating meaningful change in health care. We propose a co‐design methodology that uses Public Narrative as a model for service user engagement to help inform future healthcare development processes. Patient or Public Contribution: The experiences and perceptions of maternity service users and health professionals informed this evaluation. The project organizers were involved in the manuscript preparation stage by providing feedback, and service users wrote a commentary on the project from the lived experience perspective. [ABSTRACT FROM AUTHOR]

Introduction: Disparities in the uptake of routine and COVID‐19 vaccinations have been observed in migrant populations, and attributed to issues of mistrust, access and low vaccine confidence. Participatory research approaches and behaviour change theory hold the potential for developing tailored vaccination interventions that address these complex barriers in partnership with communities and should be explored further. Methods: This study used a theory‐informed, community‐based participatory research approach to co‐design a culturally tailored behaviour change intervention aimed at increasing COVID‐19 vaccine uptake among Congolese migrants in London, United Kingdom (2021–2022). It was designed and led by a community‐academic partnership in response to unmet needs in the Congolese community as the COVID‐19 pandemic started. Barriers and facilitators to COVID‐19 vaccination, information and communication preferences, and intervention suggestions were explored through qualitative in‐depth interviews with Congolese migrants, thematically analysed, and mapped to the theoretical domains framework (TDF) and the capability, opportunity, motivation, behaviour model to identify target behaviours and strategies to include in interventions. Interventions were co‐designed and tailored in workshops involving Congolese migrants. Results: Thirty‐two Congolese adult migrants (24 (75%) women, mean 14.3 (SD: 7.5) years in the United Kingdom, mean age 52.6 (SD: 11.0) years) took part in in‐depth interviews and 16 (same sample) took part in co‐design workshops. Fourteen barriers and 10 facilitators to COVID‐19 vaccination were identified; most barrier data related to four TDF domains (beliefs about consequences; emotion; social influences and environmental context and resources), and the behavioural diagnosis concluded interventions should target improving psychological capability, reflective and automatic motivations and social opportunities. Strategies included culturally tailored behaviour change techniques based on education, persuasion, modelling, enablement and environmental restructuring, which resulted in a co‐designed intervention comprising community‐led workshops, plays and posters. Findings and interventions were disseminated through a community celebration event. Conclusions: Our study demonstrates how behavioural theory can be applied to co‐designing tailored interventions with underserved migrant communities through a participatory research paradigm to address a range of health issues and inequalities. Future research should build on this empowering approach, with the goal of developing more sensitive vaccination services and interventions which respond to migrant communities' unique cultural needs and realities. Patient or Public Contribution: Patient and public involvement (PPI) were embedded in the participatory study design and approach, with community members co‐producing all stages of the study and co‐authoring this paper. An independent PPI board (St George's Migrant Health Research Group Patient and Public Involvement Advisory Board) comprising five adult migrants with lived experience of accessing healthcare in the United Kingdom were also consulted at significant points over the course of the study. [ABSTRACT FROM AUTHOR]

Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [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]

Background: LGBTQ+ individuals have experienced many barriers to receiving quality health care, but the worldwide implementation of person‐centred care should make a positive change. However, as forthright disclosures are difficult to find using traditional methods, novel approaches should be utilized to uncover opinions and experiences on LGBTQ+ health care. Twitter could be a place where people post on this topic. Aim: This study aimed to explore tweets mentioning LGBTQ+ (centred) health care. Methods: The methods consisted of an explorative qualitative content analysis of tweets. The tweets were collected between 26 February and 30 March 2021, resulting in 2524 tweets of which 659 were relevant for content analysis. Results: The results showed an excess of political tweets involving LGBTQ+ health care. Many tweets included general statements on the need for LGBTQ+ health care. The few tweets on personal experiences in LGBTQ+ health care showed the overwhelming need for quality care that has been made difficult by political developments. Conclusion: Most tweets were made to inform others of the necessity of quality health care for LGBTQ+ individuals, but the utilization of person‐centred care is hardly noticeable. Public Contribution: This study was conducted with the involvement of a public partner (second author) who contributed to the design, data analyses and writing of the paper. Moreover, this study involves the analysis of data provided by the public and published on social media. [ABSTRACT FROM AUTHOR]

Introduction: Already in its first implementation, the introduction of the Covid‐19 immunity certificate has generated some debate among the public. This debate might be a hindrance to the effective realization of this policy. This study aimed to systematically review published research evaluating public feeling of the Covid‐19 immunity certificate policy measure and to find which factors might influence its acceptance. Methods: We followed the scoping review methods manual by the Joanna Briggs Institute. We included studies with no time limits that presented novel data, and no exclusions have been made based on study design. We excluded articles that presented just expert opinions. Results: We found and reviewed 17 articles. The included studies were conducted in two main countries (the United Kingdom and Switzerland), with the rest from Israel, Italy, Spain, Germany, Australia, Taiwan and China. Both qualitative and quantitative studies were included, and nonrepresentative samples were mostly used to explore the public feeling about the Covid‐19 immunity certification. The included studies showed that public views on immunity certification are quite contradictory and influenced by age, gender, ethnicity, political orientation and attitudes towards Covid‐19 vaccination. The topic more often addressed by the included studies was the public's views on the positive and negative implications of the Covid‐19 immunity certificate in terms of ethical, legal and behavioural consequences of this measure. Conclusion: The varying acceptance rates are notable and may partly be linked to differences in demographics, Covid‐19 concerns and ideological beliefs, as seen in other health‐related tracking policies. Moreover, dominant factors behind the (un)success of this policy are complex and entangled with the cultural and political dimensions rather than being just technical. For this reason, it is important to expand psychosocial research to better understand the concerns behind health certifications and allow planning of culturally based and ethically sound suitable strategies. This would be very relevant to increasing public approval and compliance with this public health measure. Patient or Public Contribution: This does not apply to our work as it was a review paper. [ABSTRACT FROM AUTHOR]

Background: Health‐care providers increasingly have to discuss uncertainty with patients. Awareness of uncertainty can affect patients variably, depending on how it is communicated. To date, no overview existed for health‐care professionals on how to discuss uncertainty. Objective: To generate an overview of available recommendations on how to communicate uncertainty with patients during clinical encounters. Search strategy: A scoping review was conducted. Four databases were searched following the PRISMA‐ScR statement. Independent screening by two researchers was performed of titles and abstracts, and subsequently full texts. Inclusion criteria: Any (non‐)empirical papers were included describing recommendations for any health‐care provider on how to orally communicate uncertainty to patients. Data extraction: Data on provided recommendations and their characteristics (eg, target group and strength of evidence base) were extracted. Recommendations were narratively synthesized into a comprehensible overview for clinical practice. Results: Forty‐seven publications were included. Recommendations were based on empirical findings in 23 publications. After narrative synthesis, 13 recommendations emerged pertaining to three overarching goals: (a) preparing for the discussion of uncertainty, (b) informing patients about uncertainty and (c) helping patients deal with uncertainty. Discussion and conclusions: A variety of recommendations on how to orally communicate uncertainty are available, but most lack an evidence base. More substantial research is needed to assess the effects of the suggested communicative approaches. Until then, health‐care providers may use our overview of communication strategies as a toolbox to optimize communication about uncertainty with patients. Patient or public contribution: Results were presented to stakeholders (physicians) to check and improve their practical applicability. [ABSTRACT FROM AUTHOR]

Aim This paper aims to explore patient and public representation in a NHS clinical commissioning group and how this is experienced by staff and lay members involved. Background Patient and public involvement is believed to foster greater public representativeness in the development and delivery of health care services. However, there is widespread debate about what representation is or what it should be. Questions arise about the different constructions of representation and the representativeness of patients and the public in decision-making structures and processes. Design Ethnographic, two-phase study involving twenty-four observations across two types of clinical commissioning group meetings with patient and public involvement, fourteen follow-up interviews with NHS staff and lay members, and a focus group with five lay members. Results Perceptions of what constitutes legitimate representativeness varied between respondents, ranging from representing an individual patient experience to reaching large numbers of people. Consistent with previous studies, there was a lack of clarity about the role of lay members in the work of the clinical commissioning group. Conclusions Unlike previous studies, it was lay members, not staff, who raised concerns about their representativeness and legitimacy. Although the clinical commissioning group provides resources to support patient and public involvement, there continues to be a lack of clarity about roles and scope for impact. Lay members are still some way from constituting a powerful voice at the table. [ABSTRACT FROM AUTHOR]

Context: The 1989 UN Convention on the Rights of the Child states that children have the right to be heard in all matters affecting them. The Convention inspired a surge in research that investigates young people's perspectives on health and wellness‐related concerns and that involves children as 'co‐researchers'. Young people's advisory groups (YPAGs) are a widely used method to enable young people's involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups. Objective: In this paper, we provide a step‐by‐step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People's Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co‐production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact. Results: We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co‐production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on‐going evaluations on the impact of the group on both the young people and the research. Conclusion: Adopting a critical and reflective attitude can increase researchers' capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience's needs and priorities. [ABSTRACT FROM AUTHOR]

Background: Cyberbullying is an international Public Health concern. Efforts to understand and address it can be enhanced by involving young people. This paper describes a rights‐based collaboration with young people in a qualitative exploration of cyberbullying. It describes the establishment, implementation and evaluation of a Young Person's Advisory Group as well as identifying the impact on the research process and the young people involved. Methods: Sixteen postprimary school students met with researchers on five occasions in a youth centre. Sessions focused on building the young people's capacity to engage with the research, designing the qualitative study, interpreting study findings and evaluating the collaboration process. Results: The Advisory Group highlighted a lack of understanding and appropriate action with regard to cyberbullying but believed that their involvement would ultimately help adults to understand their perspective. Evaluation findings indicate that members were supported to form as well as express their views on the design, conduct and interpretation of the research and that these views were acted upon by adult researchers. Their involvement helped to ensure that the research was relevant and reflective of the experiences, interests, values and norms of young people. Conclusion: Young people can contribute a unique perspective to the research process that is otherwise not accessible to adult researchers. The approach described in this study is a feasible and effective way of operationalizing young people's involvement in health research and could be adapted to explore other topics of relevance to young people. [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]

Introduction: Women and those with younger onset Parkinson's Disease (YOPD) are typically diagnosed later and face unique situations and challenges. This essay aims to raise awareness of the difficulties in diagnosing YOPD and the need for a personalised approach to care for women with YOPD. Methods: Two professional women with YOPD (academic physiotherapist and practicing dentist) and a female neurologist (clinician academic) came together to write a narrative essay on their personal experience and perspectives in relation to women and YOPD. Results: The essay outlines how the experience of diagnosis is likened to a complex puzzle box with many interlocking components that are hidden and difficult to solve. The concerns of the women about their identity, work, family and the future, with most supports targeting those that are older and retired are outlined. Conclusion: It is concluded that YOPD is a complex puzzle to solve, but can be done by understanding all the intricate interlocking components of the puzzle and combined with greater awareness could lead to earlier diagnosis and the delivery of successful person‐centred care. Patient or Public Contribution: People with lived experience were involved in the essay conception and writing. [ABSTRACT FROM AUTHOR]

Introduction: Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment‐related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens. Methods: A qualitative design was used with semi‐structured interviews (online or in‐person) with participants recruited through audiology services and nonclinical services, such as lip‐reading classes. Forty‐six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data. Results: The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology). Conclusions: The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld‐led care, family‐centred care and peer support to build support for those with hearing loss. Patient or Public Contribution: We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co‐authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Engaging adolescents with chronic pain in physical activities is challenging. Motivational interviewing (MI) combined with activity promotion may encourage teens to make behavioural changes. This research aimed to assess the feasibility and acceptability of our MI‐based physical activity promotion programme, the M3 training. Methods: In our exploratory study with 35 adolescent–parent dyads, we evaluated the feasibility by enrolment, drop‐out and retention rates. Acceptability of the M3 training was examined by adherence rates and participation experiences through open‐ended questions. We also assessed changes in pain self‐efficacy and readiness to change after the M3 training intervention. Results: The M3 training was feasible with an adequate enrolment (77.8%) and retention (85.7%) rate. Both teens and parents found the M3 training acceptable and considered exercise and physical activity the most helpful elements of the programme (36% and 37%, respectively). While self‐efficacy remained unchanged, we identified a significant increase in the readiness to change for adolescents and parents. Conclusion: M3 training improved physical activity engagement while prioritising adolescents' autonomy. Furthermore, it appears to be a clinically relevant approach and could result in a positive shift in readiness to change within a shorter timeframe. Patient or Public Contribution: The preliminary version of the M3 training was reviewed and commented upon by the public (adolescents and adults). Adolescents who participated in this study were designing their own movement programme, considering their lived experiences. Participants' feedback was used to create the online version of the M3 training (which will be published elsewhere). [ABSTRACT FROM AUTHOR]

Background: Health systems in many countries see person‐centred care as a critical component of high‐quality care but many struggle to operationalize it in practice. We argue that models such as adaptive leadership can be a critical lever to support person‐centred care, particularly for people who have multiple complex care needs. Objective: To reflect on two concepts: person‐centred care and adaptive leadership and share how adaptive leadership can advance person‐centred care at the front‐line care delivery level and the organizational level. Findings: The defining feature of adaptive leadership is the separation of technical solutions (ie applying existing knowledge and techniques to problems) from adaptive solutions (ie requiring shifts in how people work together, not just what they do). Addressing adaptive challenges requires identifying key assumptions that may limit motivations for change and the behaviours influenced by these assumptions. Thus, effective care for patients, particularly those with multiple complex care needs, often entails helping care providers and patients to examine their relationships and behaviours not just identifying technical solutions. Addressing adaptive challenges also requires a supportive and enabling organizational context. We provide illustrative examples of how adaptive leadership principles can be applied at both the front line of care and the organization level in advancing person‐centred care delivery. Conclusions: Advancing person‐centred care at both the clinical and organizational levels requires a growth mindset, a willingness to try (and fail) and try again, comfort in being uncomfortable and a commitment to figure things out, in partnership, in iterative ways. Patients, caregivers, care providers and organizational leaders all need to be adaptive leaders in this endeavour. [ABSTRACT FROM AUTHOR]

Background: Fear of side‐effects can result in non‐adherence to medical interventions, such as medication and chemotherapy. Side‐effect expectations have been identified as strong predictors of later perception of side‐effects. However, research investigating predictors of side‐effect expectations is disparate. Objective: To identify factors associated with side‐effect expectations. Search strategy: We systematically searched Embase, Ovid MEDLINE, Global Health, PsycARTICLES, PsycINFO, Web of Science and Scopus. Inclusion criteria: Studies were included if they investigated associations between any predictive factor and expectations of side‐effects from any medical intervention. Data extraction and synthesis: We extracted information about participant characteristics, medication, rates of side‐effects expected and predictors of side‐effect expectations. Data were narratively synthesized. Main results: We identified sixty‐four citations, reporting on seventy‐two studies. Predictors fell into five categories: personal characteristics, clinical characteristics, psychological traits and state, presentation format of information, and information sources used. Using verbal risk descriptors (eg 'common') compared to numerical descriptors (eg percentages), having lower quality of life or well‐being, and currently experiencing symptoms were associated with increased side‐effect expectations. Discussion and conclusions: Decreasing unrealistic side‐effect expectations may lead to decreased experience of side‐effects and increased adherence to medical interventions. Widespread communications about medical interventions should describe the incidence of side‐effects numerically. Evidence suggests that clinicians should take particular care with patients with lower quality of life, who are currently experiencing symptoms and who have previously experienced symptoms from treatment. Further research should investigate different clinical populations and aim to quantify the impact of the media and social media on side‐effect expectations. [ABSTRACT FROM AUTHOR]

Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]

Background: Evidence shows that online interventions could prevent depression. However, to improve the effectiveness of preventive online interventions in individuals with subthreshold depression, it is worthwhile to study factors influencing intervention outcomes. Outcome expectancy has been shown to predict treatment outcomes in psychotherapy for depression. However, little is known about whether this also applies to depression prevention. The aim of this study was to investigate the role of participants' outcome expectancy in an online depression prevention intervention. Methods: A secondary data analysis was conducted using data from two randomised‐controlled trials (N = 304). Multilevel modelling was used to explore the effect of outcome expectancy on depressive symptoms and close‐to‐symptom‐free status postintervention (6–7 weeks) and at follow‐up (3–6 months). In a subsample (n = 102), Cox regression was applied to assess the effect on depression onset within 12 months. Explorative analyses included baseline characteristics as possible moderators. Outcome expectancy did not predict posttreatment outcomes or the onset of depression. Results: Small effects were observed at follow‐up for depressive symptoms (β = −.39, 95% confidence interval [CI]: [−0.75, −0.03], p =.032, padjusted =.130) and close‐to‐symptom‐free status (relative risk = 1.06, 95% CI: [1.01, 1.11], p =.013, padjusted = 0.064), but statistical significance was not maintained when controlling for multiple testing. Moderator analyses indicated that expectancy could be more influential for females and individuals with higher initial symptom severity. Conclusion: More thoroughly designed, predictive studies targeting outcome expectancy are necessary to assess the full impact of the construct for effective depression prevention. Patient or Public Contribution: This secondary analysis did not involve patients, service users, care‐givers, people with lived experience or members of the public. However, the findings incorporate the expectations of participants using the preventive online intervention, and these exploratory findings may inform the future involvement of participants in the design of indicated depression prevention interventions for adults. Clinical Trial Registration: Original studies: DRKS00004709, DRKS00005973; secondary analysis: osf.io/9xj6a. [ABSTRACT FROM AUTHOR]

Introduction: People with poststroke acquired brain injury (ABI) face a complex and often troubled identity reconstruction journey. The literature is rich with studies related to the psychological and neuropsychological components involved in rehabilitation, but it is lacking with respect to the investigation of the existential dimensions and the challenges associated with finding new senses and meanings for one's identity and future perspectives, body and interpersonal relationships. Methods: The aim of this study is to investigate the narrative processes of identity reconstruction after brain damage. Through a qualitative approach, 30 autobiographical narratives about self, body and the relationships with others were collected and analyzed. Semistructured interviews were used for the data collection. Narrative and positioning analysis were applied. Results: Four main positionings emerged: sanctioning a radical break with one's previous life; assuming a sense of salvation and compulsory as well as irreversible adaptation to the limitations associated with one's condition; feeling different and disabled; and considering new possibilities and active constructions of self‐being in relationship with others. These results underline the narrative processes of construction of the injury and the identity and delineate possible resources and instruments to improve the clinical practice for health practitioners. They are also valuable for other professionals who deal with neurological services and rehabilitation, such as psychological counselling and support for persons who have experienced ABI and their families. Patient or Public Contribution: This work resulted from a close collaboration between two universities and a hospital neurological rehabilitation department in the Veneto Region (Northern Italy). Three associations of people with stroke and their families living in the same area contributed to designing the research on the basis of the needs expressed by their members with the aim to identify strategies and devices to be implemented in the public service to improve the care pathway. They also participated in the interpretation of the data. [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]

Background Cervical cancer screening research has predominantly focused on one type of participation, namely compliance with medical recommendations, and has largely ignored other types of participation. While there is some research that has taken a different approach, findings in this research area are not well integrated under a theoretical framework. Objective The aim of this study is to show how consideration of a broader definition of participation and better integration of the theoretical conceptualization of participation in cervical cancer screening are both possible and desirable to enable a better understanding of women's experiences of cervical cancer screening specifically and to improve women's health generally. Main Conclusion It is suggested that alternative types of participation in cervical cancer screening warrant further investigation and that a social identity theoretical approach offers one way of integrating such conceptualizations of participation. The paper also argues for more explicit consideration of the role of social processes and of the variables, such as power, social identity and relational justice, which are involved in participation in cervical cancer screening. [ABSTRACT FROM AUTHOR]

Objective To engage a group of people with relevant lived experience in the development of a text-messaging intervention to reduce repetition of self-harm. Background Contact-based interventions, such as follow-up letters, postcards and telephone calls, have shown potential to reduce repetition of self-harm in those who present at Accident and Emergency departments. Text messaging offers a low-cost alternative that has not been tested. We set out to develop a text-based intervention. The process of intervention development is rarely reported and little is known about the impact of service user involvement on intervention design. Method We held a series of six participatory workshops and invited service users and clinicians to help us work out how to get the right message to the right person at the right time, and to simulate and test prototypes of an intervention. Results Service users rejected both the idea of a generic, 'one size fits all' approach and that of 'audience segmentation', maintaining that text messages could be safe and effective only if individualized. This led us to abandon our original thinking and develop a way of supporting individuals to author their own self-efficacy messages and store them in a personal message bank for withdrawal at times of crisis. Conclusions This paper highlights both the challenge and the impact of involving consumers at the development stage. Working with those with lived experience requires openness, flexibility and a readiness to abandon or radically revise initial plans, and may have unexpected consequences for intervention design. [ABSTRACT FROM AUTHOR]

Objective This paper examines staff views about legitimacy of different roles for community representatives sitting on health service committees as part of a formal Community Participation Program (CPP) in an Area Health Service (AHS) in Australia. Design A cross-sectional survey using a self-completed questionnaire by staff on committees with community representation in the AHS in 2008. Setting The study site has a population of approximately 1.4 million and covers 6000 km2. The population is ethnically and socio-economically diverse. Results There are generally positive staff attitudes at this AHS for community participation as part of the CPP with positive impacts identified, including on service delivery and the conduct of health service meetings. Most saw community representatives having legitimate roles in representing the community, improving communication between the health service and the community and providing constructive feedback. However, staff expectations about the community's role on committees do not match the reality they say they observe and less than half the staff thought the community and health service agree on the role of community representatives. Conclusions As well as reviewing and enhancing training and support for representatives and staff as part of the CPP, there is a need to question staff expectations about community members who sit on health service committees and whether these expectations are shared by other key stakeholders, most notably the community representatives themselves. These expectations have implications for the CPP and for similar programs designed to engage community members on committees and working groups with health professionals. [ABSTRACT FROM AUTHOR]

To elicit patients' views on whether they could contribute to improvements in their care by carrying their own health information to clinician encounters; and to consider the implications for the development of a patient-held health file (PHF). Increasing rates of chronic disease lead to health care being delivered by multiple care providers often at distributed geographic locations. As a way of increasing the availability of patient information to care providers our project will trial a PHF. Patients carry these files to doctors' appointments where clinicians record data for other doctors or the patient. Increasing the availability of patient information is anticipated to enhance the safety and quality of care delivery and improve health outcomes. Qualitative semi-structured interviews were conducted with 10 patients. Participants were evenly distributed in terms of gender, aged 60 years or greater and visited at least two specialists and one general practitioner. In this exploratory study, patients who were currently active in decision making about their own health already recorded some health information. They were receptive to carrying their information and thought they should take some responsibility for their health. Patients who were more passive in making decisions about their health did not perceive a need to carry their own information and felt that their doctors communicated adequately. Patient-held health files provide an opportunity for patients to access their health information. Such files have the potential to improve health outcomes for patients who adopt both active and passive roles in relation to their own health and engaging with their health information. [ABSTRACT FROM AUTHOR]

Objective To examine the effects of providing recordings or summaries of consultations to people with cancer and their families. Design Systematic review. Data sources MEDLINE, CINAHL, Cancerlit, EMBASE and other electronic bibliographic databases. Bibliographies of relevant papers. Selection criteria Randomized and non-randomized controlled trials of the provision of taped recordings or written summaries of consultations to people with cancer and/or their families. Main results Eight randomized controlled trials were found, all involving adult participants. No non-randomized controlled trials were found. The quality of the studies was generally poor. Between 83% and 96% of people who received recordings or summaries found them useful to remind them of what was said and/or to inform family members and friends about their illness and treatment. Of seven studies that assessed recall of information given during the consultation, four reported better recall among the groups that received recordings or summaries than among control groups. Receiving a recording or summary had no significant effect on anxiety or depression between the groups. None of the included studies assessed survival or health outcomes other than psychological outcomes. Conclusions Wider use of consultation tapes and summary letters could benefit many adults with cancer, without causing additional anxiety or depression, but consideration should be given to individuals’ circumstances and preferences. [ABSTRACT FROM AUTHOR]

Introduction: Maternity services underwent much change during the COVID‐19 pandemic. Research on the impact on miscarriage care and experiences during this time is sparse. Within a national evaluation of recurrent miscarriage care, we qualitatively explored stakeholder views and experiences of recurrent miscarriage services in Ireland. This study describes the impact of the COVID‐19 pandemic on those experiences and perceptions of care. Methods: People with professional and lived experience of recurrent miscarriage and service engagement were actively involved in this qualitative study from idea generation to analysis and reporting. We recruited women and men with two or more consecutive first‐trimester miscarriages, and people involved in the management/delivery of recurrent miscarriage services and supports. We used purposive sampling to ensure that perspectives across disciplinary or lived experience, geographical, and health service administrative areas, were included. We conducted semi‐structured interviews, virtually all due to COVID‐19 restrictions, between June 2020 and February 2021. These were audio‐recorded, and data were transcribed, and subsequently analyzed using reflexive thematic analysis. Results: We interviewed 42 service providers and 13 women and 7 men with experience of recurrent miscarriage. We actively generated two central themes during data analysis. The first—'Disconnected'—describes how many women navigated miscarriage diagnosis and management and care in subsequent pregnancies alone; many felt that this resulted in increased trauma. At the same time, men struggled with not being present to support their partners and described feeling disconnected. The second theme highlighted 'The perceived dispensability of recurrent miscarriage services and supports'. Some service providers felt that service reduction and redeployment demonstrated a lack of value in the service. Virtual clinics facilitated access to services, but a preference for in‐person care was highlighted. Conclusion: Our analysis provides rich insights into the significant impacts that the COVID‐19 pandemic has had on the way recurrent miscarriage care is provided and experienced, with important implications for early pregnancy, miscarriage and recurrent miscarriage care. Services have undergone significant changes and, while these may be temporary, how services should be delivered in the future requires consideration, particularly given the deficits in care and care experiences highlighted prepandemic. Patient or Public Contribution: Members of the multidisciplinary RE:CURRENT Project Research Advisory Group (including four parent advocates, two of whom are co‐authors on this article) were actively involved throughout the study, including the generation of topic guides and the refining of themes. [ABSTRACT FROM AUTHOR]

Introduction: Despite the growing evidence on patient and public involvement (PPI) in health research, little emphasis has been placed on understanding its quality and appropriateness to evidence synthesis (ES) and systematic reviews (SR). This study aimed to synthesise qualitative evidence on the benefits, challenges, and best practices for PPI in ES/SR projects from the perspectives of patients/public and researchers. Methods: We searched Ovid MEDLINE, Ovid EMBASE, Cochrane Library and CINAHL Plus. We also searched relevant grey literature and conducted hand‐searching to identify qualitative studies which report the benefits and challenges of PPI in individual ES/SR projects. Studies were independently screened by two reviewers for inclusion and appraised using the Joanna Briggs Institute's Qualitative Tool. Included studies were synthesised narratively using thematic synthesis. Results: The literature search retrieved 9923 articles, of which eight studies were included in this review. Five themes on benefits emerged: two from patients'/public's perspective—gaining knowledge, and empowerment; and three from researchers' perspective—enhancing relevance, improving quality, and enhancing dissemination of findings. Six themes on challenges were identified: three from patients'/public's perspective—poor communication, time and low self‐esteem; and three from researchers' perspective—balancing inputs and managing relations, time, and resources and training. Concerning recommendations for best practice, four themes emerged: provision of sufficient time and resources, developing a clear recruitment plan, provision of sufficient training and support, and the need to foster positive working relationships. Conclusion: Highlighting the benefits and challenges of PPI in ES/SR projects from different stakeholder perspectives is essential to understand the process and contextual factors and facilitate meaningful PPI in ES/SR projects. Future research should focus on the utilisation of existing frameworks (e.g., Authors and Consumers Together Impacting on eVidencE [ACTIVE] framework) by researchers to help describe and/or report the best approaches and methods for involving patients/public in ES/SRs projects. Patient and Public Contribution: This review received great contributions from a recognised PPI partner, the Chair of the Cochrane Consumer Network Executive, to inform the final stage of the review (i.e., interpretation, publication and dissemination of findings). The PPI partner has been included as an author of this review. [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]

Background: Currently, there is a lack of interaction between research and healthcare practice. As a result, research findings reach healthcare practice only late, and topics relevant to practice are often not known in research. Involving people living with dementia (PlwD), their relatives and healthcare providers in dementia care research can accelerate this process. For inclusion, firm and reliable structures are needed, which are to be established with the help of the Translational Network for Dementia Care Research in Germany. However, there is only limited knowledge about the priorities, expectations and conditions of stakeholders (healthcare providers and dementia researchers) for such cooperation within a network. Objectives: The aim is to gather stakeholders' views on (i) future research topics to be addressed within the dementia care research network, (ii) the nature of collaboration within the network and (iii) the facilitating and hindering factors for establishing such a network. Methods: Within an exploratory sequential mixed‐method study, we interviewed 87 stakeholders within eleven semistructured focus group interviews. The interviews were transcribed, pseudonymized and analyzed using qualitative content analysis. The qualitative data were analyzed with MAXQDA. Based on the qualitative results found in the focus group interviews, a supplementary online questionnaire was developed to prioritise and rank these findings afterwards. Results: Stakeholders prioritized a comprehensible transfer of research results into practice, increased involvement of PlwD and their relatives (additionally marginalized groups such as people with a migrant background) in research and exchange between researchers. Cooperation should preferably occur in a regional context with local contacts, and the latest research results should be made available via an online database. The stakeholders' time, finances and human resources should be considered. Conclusion: Stakeholders have partly similar preferences and goals for cooperation and involvement, emphasizing that such interaction in a network offers the possibility of long‐term, effective collaboration and added value for practice and research. Patient or Public Contribution: For this study, dementia healthcare providers and dementia care researchers were asked about their perspectives. Their involvement is further elucidated in the manuscript text. [ABSTRACT FROM AUTHOR]

Introduction: Clinical trials must include diverse participants to ensure the wide applicability of results. However, people from ethnic minorities are included in clinical trials at rates lower than expected given their share of the population. Working with South Riverside Community Development Centre (SRCDC), Talking Trials used public engagement to foster discussions around the underrepresentation of those from minority ethnic communities in clinical trials and to identify and address concerns surrounding trial participation. Methods: We conducted three workshops with 13 co‐researchers from minority ethnic backgrounds. We explored perceptions and understanding of clinical trials alongside participatory art activities to help move away from verbocentric methods of communication. These artworks formed an exhibition that was presented to the community, prompting further discussions and engagement. Findings: Co‐production workshops were an effective tool to introduce the public to trial research. With little knowledge of clinical trials at the beginning of the process, our co‐researchers formed a cohesive group, sharing initial fears and mistrust towards trials. As conversations progressed these attitudes clearly shifted. Artwork produced during the workshops was incorporated into an exhibition. Quotes and creative pieces from the group were included to reflect the themes identified. Presenting the exhibition at Riverside Festival enabled further engagement with a wider diverse community. The focus on co‐production helped build a network of individuals new to research and keen to become involved further. Conclusion: Inclusive and democratic co‐production, enriched by participatory art practices, provided a powerful means of enabling our group to create new insights and foster new relationships. Projects like Talking Trials can diversify the research process itself—for example, four co‐researchers have commenced lay research partner roles on trial management groups and a lay advisory group is in development. Patient or Public Contribution: Three members of staff at SRCDC were on the project delivery group and involved in the initial project design, subsequently helping to connect us with members of the Riverside community to work as co‐researchers. Two of the SRCDC staff are co‐authors of this manuscript. The project had 13 public co‐researchers guiding the direction of this research and creating the artwork displayed in the art exhibition. [ABSTRACT FROM AUTHOR]

Background: COVID‐19 vaccines have been the central pillar of the public health response to the pandemic, intended to enable us to 'live with Covid'. It is important to understand change and complexity of COVID‐19 vaccines attitudes and decisions to maximize uptake through an empathetic lens. Objective: To explore the factors that influenced people's COVID‐19 vaccines decisions and how their complex attitudes towards the vaccines had changed in an eventful year. Design and Participants: This is a follow‐up study that took place in Bradford, UK between October 2021 and January 2022, 1 year after the original study. In‐depth phone interviews were conducted with 12 (of the 20 originally interviewed) people from different ethnic groups and areas of Bradford. Reflexive thematic analysis was conducted. Results: Eleven of the 12 participants interviewed had received both doses of the COVID‐19 vaccine and most intended to have a booster dose. Participants described a variety of reasons why they had decided to have the vaccines, including the following: feeling at increased risk at work; protecting family and others in their communities; unrestricted travel and being influenced by the vaccine decisions of family, friends and colleagues. All participants discussed ongoing interaction with COVID‐19 misinformation and for some, this meant they were uneasy about their decision to have the vaccine. They described feeling overloaded by and disengaged from COVID‐19 information, which they often found contradictory and some felt mistrustful of the UK Government's motives and decisions during the pandemic. Conclusions: The majority of participants had managed to navigate an overwhelming amount of circulating COVID‐19 misinformation and chosen to have two or more COVID‐19 vaccines, even if they had been previously said they were unsure. However, these decisions were complicated, demonstrating the continuum of vaccine hesitancy and acceptance. This follow‐up study underlines that vaccine attitudes are changeable and contextual. Patient or Public Contribution: The original study was developed through a rapid community and stakeholder engagement process in 2020. Discussion with the Bradford Council Public Health team and the public through the Bradford COVID‐19 Community Insights Group was undertaken in 2021 to identify important priorities for this follow‐up study. [ABSTRACT FROM AUTHOR]

Background: Culturally and Linguistically Diverse (CALD) groups within high‐income countries are at risk of being left behind by the COVID‐19 vaccination rollout. They face both access and attitudinal barriers, including low trust in government and health authorities. Objective: To explore perceptions and attitudes towards COVID‐19 vaccination, as well as facilitators, barriers and strategies to promote uptake among CALD residents of Western Australia (WA), where there were almost no COVID‐19 cases for 2 years. Design and Participants: Perth, WA's capital, was chosen as the state's study site because most of the state's CALD population lives there. Eleven semistructured in‐depth interviews and three focus groups (with 37 participants) were conducted with CALD residents between August and October 2021. Thematic analysis was conducted, informed by the 'Capability', 'Opportunity', 'Motivation', 'Behaviour' model. Results: CALD participants faced barriers including a lack of knowledge about COVID‐19 and the vaccines, low self‐rated English proficiency and education levels, misinformation, passive government communication strategies and limited access to vaccine clinics/providers. They were, however, motivated to vaccinate by the imminent opening of state and international borders, trust in government and healthcare authorities, travel intentions and the desire to protect themselves and others. Conclusions: Despite high levels of trust and significant desire for vaccines among CALD communities in Perth, current strategies were not meeting their needs and the community remains at risk from COVID‐19. Tailored intervention strategies are required to provide knowledge, address misinformation and facilitate access to ensure uptake of COVID‐19 vaccines—including for additional doses—amongst CALD communities. Governments should work with trusted CALD community members to disseminate tailored COVID‐19 vaccine information and adequately translated resources. Patient or Public Contribution: The Wesfarmers Centre of Vaccines and Infectious Diseases Community Reference Group at Telethon Kids Institute consulted on this project in September 2020; Ishar Multicultural Women's Health Services consulted on and facilitated the focus groups. [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]

Background: Poor health outcomes amongst marginalized groups result in part from health inequities related to social and structural determinants of health. Marginalized people report higher incidences of comorbidities, chronic disease and adverse health behaviours than their nondisadvantaged peers. The objective of this review is to examine marginalized Australians' experiences of and access to community‐based primary health services in urban locations. Methods: A systematic search incorporating related MeSH terms and synonyms pertaining to marginalized Australian populations and their health‐seeking was conducted across seven databases. We included qualitative studies that reported experiences of health‐seeking within community‐based primary health care in metropolitan Australia. Participant populations experiencing marginalization due to social stigma and isolation, early‐life disadvantage, poor health and/or financial hardship were included. A meta‐ethnographic framework was used to synthesize themes across selected studies and researcher triangulation was employed to develop higher‐order themes. Results: Search results revealed 26 studies included for critical appraisal and synthesis. Seven higher‐order themes were developed describing experiences of health service engagement amongst marginalized groups: (1) Understanding the patient within the context of family and community, (2) Health and cultural beliefs influence health‐seeking, (3) Lack of information and poor cultural competence limit utilization of services, (4) Motivation for treatment influences health service engagement, (5) Accessing services, a spectrum of experience—from discrimination to validation, (6) Navigating a complex system in a complex society, (7) Preferences for health care and expectations for systemic change. Conclusion: Marginalized Australians experience health disadvantage across micro, meso and macro levels of health system navigation and commonalities in health‐seeking were identified across each of the distinct marginalized groups in our analysis. This review outlines important areas of consideration for health care provision and policy development essential to helping address health inequities for a diversity of marginalized populations. Patient or Public Contribution: Whilst patient voices were reported across all studies included within this review, no further patient or public contribution applies to this study. [ABSTRACT FROM AUTHOR]

Introduction: Adolescence and young adulthood are especially critical times to learn about mental health, given that 75% of mental health issues are developed by the age of 24. Animations have great potential to effectively deliver mental health information to young people. A series of five short animated films to promote mental health literacy were created with and for young people in partnership with the multi‐award‐winning independent animation studio, Aardman Animations. The aim of this study was to explore young people's perceptions of the cocreated animated films. Methods: Seven Youth Juries were conducted to capture young people's opinions and recommendations about the content related to mental health literacy and presentation style of the cocreated animated films. Thematic analysis was used to analyse the audio transcripts. Results: Many participants reported a view that the animated films had the potential to promote mental health literacy, especially for understanding mental health and reducing stigma. Some recommendations were provided to improve the films, such as including subtitles and having a better transition to the companion website. Conclusion: Cocreated animations have great potential to promote the mental health literacy of young people. We hope that the findings from the present study will inform future media development to make them as effective as possible. Patient or Public Contribution: Young people were actively involved in the development, production, implementation and evaluation (up to the time before data analysis) of the animated films. [ABSTRACT FROM AUTHOR]

Objectives: (i) Describe patients' self‐selected activity‐related rehabilitation goals, and (ii) compare attainment of these rehabilitation goals among people with persistent tension‐type neck pain receiving a group‐based pain and stress self‐management intervention (PASS) or individual physiotherapy (IPT). Methods: Before intervention and random allocation to PASS or IPT, 156 people (PASS n = 77, IPT n = 79), listed three self‐selected activity‐related rehabilitation goals by use of the Patient Goal Priority Questionnaire (PGPQ). For each activity goal, participants rated limitations in activity performance, self‐efficacy and fear of activity performance, readiness to change to improve performance, and expectations of future activity performance. At follow‐ups (10 weeks, 20 weeks, 1 year and 2 years after inclusion), participants also responded to a question on changes made to improve activity performance. Mann–Whitney U test was used to evaluate between‐group differences. Results: There were between‐group differences in favour of PASS in the attainment of self‐selected rehabilitation goals with regard to activity limitations and satisfaction with activity performance at all follow‐ups. Conclusions: PASS was more successful than IPT for the attainment of self‐selected rehabilitation goals, improvements in activity limitations and satisfaction with activity performance as measured by PGPQ. The PASS programme emphasized the importance of applying active pain‐ and stress‐coping techniques in personal 'risk situations' for pain flare‐ups, which appear to support people with persistent tension‐type neck pain to make changes in their lives to improve activity performance. Patient or Public Contribution: Patient engagement in rehabilitation by self‐selected goals was investigated, but patients were not involved in the design or conduct of the study. [ABSTRACT FROM AUTHOR]

Introduction: The social and economic consequences of COVID‐19 have the potential to affect individuals and populations through different pathways (e.g., bereavement, loss of social interaction). Objective: This study adopted a solicited diary method to understand how mental health was affected during England's first lockdown. We also considered the experiences of diary keeping during a pandemic from the perspective of public participants. Methods: Fifteen adults older than 18 years of age were recruited from northwest England. Diarists completed semistructured online diaries for 8 weeks, which was combined with weekly calls. A focus group captured participants' experiences of diary keeping. Findings: Four key factors influenced mental health, which fluctuated over time and in relation to diarists' situations. These concerned navigating virus risk, loss of social connections and control and constrictions of the domestic space. Diarists also enacted a range of strategies to cope with the pandemic. This included support from social networks, engagement with natural environments, establishing normality, finding meaning and taking affirmative action. Conclusion: Use of diary methods provided insights into the lived experiences of the early months of a global pandemic. As well as contributing evidence on its mental health effects, diarists' accounts illuminated considerable resourcefulness and strategies of coping with positive effects for well‐being. While diary keeping can also have therapeutic benefits during adversity, ethical and practical issues need to be considered, which include the emotional nature of diary keeping. Public Contribution: Members of the public were involved in interpretation of data as well as critiquing the overall diary method used in the study. [ABSTRACT FROM AUTHOR]

Background: Processes of the patient and public involvement (PPI) in health research shifted quickly during 2020. Faced with large‐scale issues, such as the COVID‐19 pandemic, the need to adapt processes of PPI to uphold commitments to nurturing the practice of 'nothing about us without us' in research has been urgent and profound. We describe how processes of PPI in research on patient‐oriented methods of knowledge translation and implementation science were adapted by four teams in a Canadian setting. Methods: As part of an ongoing quality improvement self‐study to enhance PPI within these teams, team members shared their experiences of PPI in the context of this pivotal year during interviews and facilitated discussions. Drawing on these experiences, we outline challenges and reflections for adapting processes of PPI in health research on methods in times of urgency, conflict and fast‐moving change. Discussion: Our reflections offer insight into common issues encountered across teams that may be amplified during times of rapid change, including handling change and uncertainty, sustaining relationship‐building and hearing differing perspectives in processes of PPI. Conclusion: These learnings present an opportunity to help others active in or planning patient‐oriented methods research to reflect on the changing nature of PPI and how to adapt PPI processes in response to turbulent situations in the future. Patient and Public Contributions: The key reflections presented draw heavily from perspectives shared by eight patient and public partners in interviews and facilitated discussions (the conduct and analysis of data in the quality improvement self‐study). [ABSTRACT FROM AUTHOR]

Background Obesity-related stigma likely influences how obese people interact with health-care professionals and access health care. Aim To undertake a synthesis of studies examining the views and experiences of both obese people in relation to their health-care provision and health-care professionals in providing care to obese patients. Search strategy A systematic search of key electronic databases relating to professional or patient experiences of, or perspectives on, obesity was performed in 2008 and updated in 2010. Reference lists of article bibliographies were searched, along with hand searches of relevant journals. Inclusion Criteria Studies were screened against explicit inclusion criteria and published between 1990 and 2010. Findings were examined and organized thematically. Data Extraction Data were extracted focusing on obesity, stigma and access to health-care services. All included studies were subject to critical appraisal to assess the quality of the research. Findings Thirty studies were identified. All the studies reported obesity impacting on health-care interactions. Key themes identified were experiences of stigma and feelings of powerlessness, treatment avoidance, psycho-emotional functioning, professional attitudes, confidence and training, variations in health contact time and finally, differences in treatment options and preventative measures. Conclusion Obesity is a stigmatized condition that impacts negatively on the relationship between patients and health-care providers. Given the increasing prevalence of obesity and the range of therapeutic options available, further work is necessary to understand how the presence of obesity affects health-care interactions and decision making. [ABSTRACT FROM AUTHOR]

This study investigates health professionals' reactions to patients' perceptions of health issues - a little-researched topic vital to the reform of the care of chronic illness. Focus groups were undertaken with doctors, nurses, allied health staff and pharmacists ( n = 88) in two Australian urban regions. The focus groups explored responses to patient experiences of chronic illness (COPD, Diabetes, CHF) obtained in an earlier qualitative study. Content analysis was undertaken of the transcripts assisted by NVivo7 software. Health professionals and patients agreed on general themes: that competing demands in self-management, financial pressure and co-morbidity were problems for people with chronic illness. However where patients and carers focused on their personal challenges, health professionals often saw the patient experience as a series of failures relating to compliance or service fragmentation. Some saw this as a result of individual shortcomings. Most identified structural and attitudinal issues. All saw the prime solution as additional resources for their own activities. Fee for service providers (mainly doctors) sought increased remuneration; salaried professionals (mainly nurses and allied health professionals) sought to increase capacity within their professional group. Professionals focus on their own resources and the behaviour of other professionals to improve management of chronic illness. They did not factor information from patient experience into their views about systems improvement. This inability to identify solutions beyond their professional sphere highlights the limitations of an over-reliance on the perspectives of health professionals. The views of patients and carers must find a stronger voice in health policy. [ABSTRACT FROM AUTHOR]

Background: COVID‐19 vaccines can offer a route out of the pandemic, yet initial research suggests that many are unwilling to be vaccinated. A rise in the spread of misinformation is thought to have played a significant role in vaccine hesitancy. To maximize uptake, it is important to understand why misinformation has been able to take hold at this time and why it may pose a more significant problem within certain contexts. Objective: To understand people's COVID‐19 beliefs, their interactions with (mis)information during COVID‐19 and attitudes towards a COVID‐19 vaccine. Design and Participants: Bradford, UK, was chosen as the study site to provide evidence to local decision makers. In‐depth phone interviews were carried out with 20 people from different ethnic groups and areas of Bradford during Autumn 2020. Reflexive thematic analysis was conducted. Results: Participants discussed a wide range of COVID‐19 misinformation they had encountered, resulting in confusion, distress and mistrust. Vaccine hesitancy could be attributed to three prominent factors: safety concerns, negative stories and personal knowledge. The more confused, distressed and mistrusting participants felt about their social worlds during the pandemic, the less positive they were about a vaccine. Conclusions: COVID‐19 vaccine hesitancy needs to be understood in the context of the relationship between the spread of misinformation and associated emotional reactions. Vaccine programmes should provide a focused, localized and empathetic response to counter misinformation. Patient or Public Contribution: A rapid community and stakeholder engagement process was undertaken to identify COVID‐19 priority topics important to Bradford citizens and decision makers. [ABSTRACT FROM AUTHOR]

Background: The introduction of screening in the UK and other high‐income countries led to a significant decrease in the incidence of cervical cancer and increase in survival rates. Minority ethnic groups are often underrepresented in screening participation for reasons that are poorly understood. Objective: To explore experiences of cervical screening participation and non‐participation of women from minority ethnic populations in Scotland and gain insights to support the development of interventions that could potentially support screening participation and thereby reduce inequalities. Design: Qualitative comparison group study using in‐depth, semi‐structured individual interviews that were thematically analysed. Setting and participants: This study took place in Scotland. Fifty women were purposively sampled from four ethnic minority groups: South Asian; East European; Chinese; and Black African or Caribbean. White Scottish women were also interviewed. Results: Many experiences described were common regardless of ethnicity, such as difficulties managing competing priorities, including work and care responsibilities. However, important differences existed across the groups. These included going abroad for more frequent screening, delayed introduction to screening and not accessing primary care services, language difficulties in health‐care settings despite proficiency in English and not being sexually active at screening commencement. Experiences of racism, ignorance and feeling shamed were also reported. Conclusions: Key differences exist in the experience of minority ethnic groups in Scotland. These offer potential opportunities to reduce disparity and support screening participation including maximizing co‐incidental interactions and developing outreach work. [ABSTRACT FROM AUTHOR]

Background: Parents of disabled children report poorer inpatient experiences when they stay in hospital, and some staff report finding communicating with disabled children challenging. This study tested the feasibility of implementing a training package for staff on paediatric wards to improve communication with disabled children, especially those with communication difficulties, and their families. The package was developed with parent carers and clinicians, and comprises a manual, a video of parent carers talking about real experiences, discussion points and local resources. The 50‐minutes training is intended for in‐house delivery by local facilitators. Methods: Thirteen training sessions were delivered in paediatric wards across four hospitals in England, totalling 123 staff who took part. Participants completed questionnaires before (n = 109) and after (n = 36) training, and a sample of champions (senior clinicians) and facilitators were interviewed at the end of the study. Results: Facilitators found the training easy to deliver, and participants felt they took away important messages to improve their practice. After the training, further changes were reported at an organizational level, including offering further training and reviewing practices. Conclusions: This study provides supporting evidence for the implementation of a low‐cost, minimal‐resource training package to support staff communication with children and their families in hospitals. It provides promising indication of impact on behavioural change at the individual and organizational level. Patient and public contribution: Parent carers identified the need and helped to develop the training, including featuring in the training video. They were also consulted throughout the study on research design, delivery and reporting. [ABSTRACT FROM AUTHOR]

Background: Numerous studies of user involvement in research have been conducted. However, there is a lack of studies applying observational methods and addressing the concrete practice of involvement. Objective: To determine what knowledge types and competences users apply when involved in the research process through user panel meetings. Design: User panel meetings in a qualitative project in rehabilitation were sound‐recorded and transcribed verbatim. Data analysis applied an abductive approach framed by positioning theory. Setting and participants: Six rehabilitation service users and a similar number of researchers met 20 times during a six‐year project period. They discussed various issues in the research process such as interview guides, analysis and dissemination of results. Findings: The service users combined their respective knowledge and competence into six positions enacted in the panel interactions. They engaged as co‐researchers, based their contributions on their respective personal histories, represented an NGO and peers, applied their respective professional and educational backgrounds and, finally, engaged as concerned citizens. Discussion and conclusion: The findings add to the discussion of professionalization of user involvement by introducing a wider array of positions enacted than do the findings of previous studies. Researchers recruiting user panel members, as well as NGOs appointing candidates for user panels, are advised to consider a wide competence profile for possible candidates. A panel is also considered as a resource in confirming and elaborating on a study's findings. Patient and public contribution: A service user panel contributed to the study. [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: Opportunities for cancer survivors' employment can both reflect and perpetuate health inequities, as employment is an important social determinant of health. Socio‐economic and geographic disadvantage is associated with greater difficulty finding work, but little is known about work needs of Australian cancer survivors living with disadvantage. Objective: This study examined survivor and health‐care professional (HCP) perspectives on barriers experienced by Australian cancer survivors experiencing disadvantage when attempting to remain at or return to work. Method: Focus groups and individual interviews were held with cancer survivors (N = 15) and oncology and primary HCPs (N = 41), focusing on communities at risk of disadvantage. Participants were asked about employment barriers and facilitators in general and in the context of disadvantage. Themes were identified using framework analysis. Results: Geographic and socio‐economic disadvantage resulted in specific individual‐ and system‐level barriers. These related to distance from treatment and support services and limited availability and suitability of work for survivors living with geographic disadvantage, and limited availability, security, and flexibility of work and previous unemployment for survivors living with socio‐economic disadvantage. Identified needs included system‐level changes such as public and workplace‐level education, legislative and policy changes, and better access to resources. Conclusions: Cancer survivors living with disadvantage experience limited access to flexible employment opportunities and resources, further perpetuating their disadvantage. Promotion of health equity for cancer survivors living with disadvantage requires systemic changes to support attempts to remain at/return to work. Patient or public contribution: This study included cancer survivors and HCPs as investigators, authors and participants. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is becoming more commonplace in mental health research. There are strong moral and ethical arguments for good quality PPI. Few studies have documented and evaluated PPI in self‐harm and suicide research. Inconsistent reporting of PPI makes it difficult to discern practices that deliver quality, effective and meaningful involvement. It is important to understand and address emotional support needs of PPI members contributing to sensitive topics such as suicide and self‐harm. Therefore, this study will examine the effect of PPI on self‐harm and suicide research and explore patients', carers' and researchers' experiences and views in relation to the quality of PPI practice and provision of appropriate support for PPI members. Methods: This protocol outlines the longitudinal, mixed methodological approach that will be taken. Qualitative and quantitative data will be collected via baseline and repeated questionnaires, document review and semi‐structured interviews. Both PPI members and researchers will be invited to participate in this study. The two‐year data collection period will enable evaluation of PPI throughout the entire research cycle. An integrated approach will be taken to data analysis, using inductive thematic analysis and descriptive and repeated measures analyses, to address specified study aims. Dissemination: Findings from this study will inform practical guidance to support self‐harm and suicide researchers in effectively involving people with experiential knowledge in their research. Analyses will offer insight into the effect of PPI throughout the research process and assess changes in PPI members' and researchers' experiences of involvement across a two‐year period. [ABSTRACT FROM AUTHOR]