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Background: Working together and co‐production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. Objective: A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. Methods: Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four‐dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. Results: Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. Conclusion: Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. Patient and Public Involvement: Two public advisors were involved throughout the 3 years of this doctoral research. They co‐evaluated this involvement and are co‐authors of this paper. [ABSTRACT FROM AUTHOR]

Introduction: To contribute to addressing diagnostic health inequalities in the United Kingdom, this review aimed to investigate determinants of diagnostic service use amongst people experiencing high deprivation in the United Kingdom. Methods: A systematic review was conducted using three databases (EBSCO, Web of Science and SCOPUS) to search studies pertaining to diagnostic service use amongst people experiencing high deprivation. Search terms related to diagnostics, barriers and facilitators to access and deprivation. Articles were included if they discussed facilitators and/or barriers to diagnostic service access, contained participants' direct perspectives and focussed on individuals experiencing high deprivation in the United Kingdom. Articles were excluded if the full text was unretrievable, only abstracts were available, the research did not focus on adults experiencing high deprivation in the United Kingdom, those not including participants' direct perspectives (e.g., quantitative studies) and papers unavailable in English. Results: Of 14,717 initial papers, 18 were included in the final review. Determinants were grouped into three themes (Beliefs and Behaviours, Emotional and Psychological Factors and Practical Factors), made up of 15 sub‐themes. These were mapped to a conceptual model, which illustrates that Beliefs and Behaviours interact with Emotional and Psychological Factors to influence Motivation to access diagnostic services. Motivation then influences and is influenced by Practical Factors, resulting in a Decision to Access or Not. This decision influences Beliefs and Behaviours and/or Emotional and Psychological Factors such that the cycle begins again. Conclusion: Decision‐making regarding diagnostic service use for people experiencing high deprivation in the United Kingdom is complex. The conceptual model illustrates this complexity, as well as the mediative, interactive and iterative nature of the process. The model should be applied in policy and practice to enable understanding of the factors influencing access to diagnostic services and to design interventions that address identified determinants. Patient or Public Contribution: Consulting lived experience experts was imperative in understanding whether and how the existing literature captures the lived experience of those experiencing high deprivation in South England. The model was presented to lived experience experts, who corroborated findings, highlighted significant factors for them and introduced issues that were not identified in the review. [ABSTRACT FROM AUTHOR]

Background: This paper describes and critically reflects on how children and young people (CYP) acted as public advisors to coproduce health information materials about Long Covid for younger audiences. This work was underpinned by the Lundy model, a framework which provides guidance on facilitating CYP to actively contribute to matters which affect them. Methods: Coproduction activity sessions took place with CYP in schools as well as video conferences with a CYP stakeholder group and CYP with Long Covid. Activities encouraged CYP to focus on the content, format, and design of materials and used problem‐based and collaborative learning to encourage engagement with the project. Using a range of methods and open discussion, CYP codesigned a series of Long Covid health information materials for younger audiences. Results: Sixty‐six CYP (aged 10–18), and two young adults were involved. CYP codesigned specifications for the final materials and provided feedback on early designs. The project led to the development of a series of health information materials targeted at CYP: a short social media campaign with six short videos and a 12‐page illustrated leaflet about Long Covid; released on social media and distributed in local area. All the CYP were positive about the project and their involvement. Discussion: Involving CYP led to the development of innovative and engaging information materials (influence). Developing rapport was important when working with CYP and this was facilitated by using approaches and activities to establish an environment (space) where the CYP felt comfortable sharing their views (voice) and being listened to (audience) by the adults in the project. Working with external groups who are willing to share their expertise can help the meaningful involvement of voices 'less heard'. Public Contribution: One CYP coapplicant contributed to the project design and facilitation of PPIE sessions, 64 CYP were involved in the PPIE sessions to design and feedback on materials. Two young adult media producers worked with CYP to produce these materials, another CYP supported this process. Three public contributors were involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Many Covid‐19 survivors are living with unresolved, relapsing and remitting symptoms and no 'one size' of treatment is likely to be effective for everyone. Supported self‐management for the varied symptoms of Long Covid (LC) is recommended by the National Institute for Health and Care Excellence in the United Kingdom. We aimed to develop a new personalised support intervention for people living with LC using a structured co‐design framework to guide replication and evaluation. Methods: We used the improvement methodology, Experience‐Based Co‐Design, in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from 'Bridges Self‐Management' (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co‐designed resources are also central to Bridges. Adults who self‐identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co‐design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content. Results: People with LC (n = 28), and HCPs (n = 9) supported co‐design of a book (hard‐copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co‐design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategies and links to reputable advice and support for navigating healthcare services. Co‐design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments. Conclusion: We have developed a new personalised support intervention, with core principles to be used in one‐to‐one sessions delivered by trained HCPs, with a new co‐designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the 'LISTEN' intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex Interventions. Patient and Public Contribution: The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co‐design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co‐authors of this paper. [ABSTRACT FROM AUTHOR]

Background: Despite increasing support for stakeholder inclusion in research, there is limited evaluative research to guide safe (i.e., youth‐friendly) and meaningful (i.e., non‐tokenistic) partnerships with young people with lived experience of mental ill‐health in research. This paper describes a pilot evaluation and iterative design of a Youth Lived Experience Working Group (LEWG) protocol that was established by the Youth Mental Health and Technology team at The University of Sydney's Brain and Mind Centre, based on the results of two studies. Methods: Study one consisted of a pilot evaluation of the extent to which youth partners felt empowered to contribute, to qualitatively explore how LEWG processes could be improved. Youth partners completed online surveys, and results were shared over two LEWG meetings in 2021 to empower youth partners to collectively identify actions of positive change regarding LEWG processes. These meetings were audio‐recorded and transcripts were subsequently coded using thematic analysis. Study two assessed whether LEWG processes and proposed improvements were acceptable and feasible from the perspective of academic researchers via an online survey in 2022. Results: Quantitative and qualitative data collected from nine youth partners and 42 academic researchers uncovered initial learnings regarding facilitators, motivators, and barriers to partnering with young people with lived experience in research. Implementing clear processes for youth partners and academic researchers on effective partnership strategies, providing training opportunities for youth partners to develop research skills, and providing regular updates on how youth partner contributions led to research outcomes were identified as key facilitators. Conclusions: This pilot study provides insight into a growing international field on how to optimise participatory processes so that researchers and young people with lived experience can be better supported and engaged to make meaningful contributions to mental health research. We argue that more transparency is needed around participatory research processes so that partnerships with young people with lived experience are not merely tokenistic. Consumer Contributions: Our study has also been approved by and reflects the concepts and priorities of our youth lived experience partners and lived experience researchers, all of whom are authors of this paper. [ABSTRACT FROM AUTHOR]

Although the implementation of person‐centred care (PCC) has gained momentum in healthcare systems, it is not always obvious why it is an important objective in clinical settings and educational institutions that train future healthcare professionals. Various conceptions about PCC have flourished, such as that it only works in certain healthcare contexts, it is the same as the patient making all their own healthcare decisions, it is too demanding for most patients, the word 'patient' may no longer be used, the care provided is already person‐centred, and that there is simply not enough time and resources to achieve it. This viewpoint paper aims to problematize these conceptions and may be used for didactical and reflective exercises that support the transition towards more person‐centred healthcare. Patient or Public Contribution: The Person Council for patients and carers at the University of Gothenburg provided focus group input on and validated the occurrence of the conceptions discussed in the present paper. The person council consists of a group of persons with many years of personal experiences of health care, either as patients and/or relatives/carers. One member of the person council who is also a designer and artist created the illustration for the article. [ABSTRACT FROM AUTHOR]

Introduction: The implementation and evaluation of patient participation to obtain high‐quality transitional care for older people is an international priority. Intermediate care (IC) services are regarded as an important part of the patient's pathway from the specialist to the primary care levels, bridging the gap between the hospital and the home. Patients may experience varying capacities and conditions for patient participation. Yet, few tools for evaluating patients' preferences for patient participation within IC services are at hand. Accordingly, further knowledge is needed to understand and scaffold processes for patient participation in IC. Therefore, the aim of this project was to translate, validate and pilot test the Patient Preferences for Patient Participation (the 4Ps) with patients in IC services in Norway. Methods: This project comprised two phases: (1) a careful translation and cultural adaptation process, followed by a content validity trial among 15 patients and staff in Norwegian IC and (2) a cross‐sectional survey of the instrument with 60 patients admitted to IC. Results: The translation between Swedish and Norwegian required no conceptual or contextual adaptations. The subsequent cross‐sectional study, designed as a dialogue between the patients and staff, revealed that only 50% of the participants received a sufficient level of patient participation based on their preferences, mostly indicating that patients were receiving less‐than‐preferred conditions for engaging in their health and healthcare issues. Conclusion: The 4Ps instrument was deemed suitable for measuring patient participation based on patient preferences in the IC context and was feasible for both healthcare professionals and patients to complete in an interview when arriving at and leaving services. This may support person‐centred communication and collaboration, calling for further research on what facilitates patient participation and the implementation of person‐centred services for patients in IC. Patient or Public Contribution: First, the current paper is part of the IPIC study (i.e., the implementation of patient participation in IC). Influenced by a James Lind Alliance process, the study addresses research uncertainties identified by patients, next of kin, staff and researchers in the cocreation process. Second, cognitive interviewing was conducted with 15 representatives of the target population: seven patients receiving IC services, one home‐dwelling previous IC patient (altogether four women and four men, most of them 80 years or older) and seven healthcare staff working in IC services. The interviews determined the relevance, comprehensiveness and clarity of the 4Ps. Finally, 60 patients admitted to IC took part in the cross‐sectional study. [ABSTRACT FROM AUTHOR]

Background: Young people have the right to be informed and consulted about decisions affecting their lives. Patient and public involvement (PPI) ensures that research is carried out 'with' or 'by' young people rather than 'to', 'about' or 'for' them. The aim of this paper is to outline how youth PPI can be embedded within a physical activity intervention, reflect on the impact of PPI and provide recommendations for future PPI in a similar context. Methods: A Youth Advisory Group (YAG) was set up within the Walking In ScHools (WISH) Study to involve adolescent girls in the delivery, implementation and dissemination of a physical activity intervention targeted at adolescents. Schools invited pupils aged 12–14 years and 15–18 years to YAG meetings (n3, from 2019 to 2023). Participative methods were used to inform recruitment strategies and data collection methods for the WISH Study. Results: Across the three YAG meetings, n51 pupils from n8 schools were involved. Pupils enjoyed the YAG meetings, felt that their feedback was valued and considered the meetings a good way to get young people involved in research. The YAG advised on specific issues and although measuring impact was not the primary aim of the YAG meetings, over the course of the study there were many examples of the impact of PPI. Recruitment targets for the WISH Study were exceeded, the attrition rate was low and pupils were engaged in data collection. Conclusion: Youth PPI is a developing field and there are few physical activity studies that report the PPI work undertaken. Within the WISH Study, three YAG meetings were held successfully, and the views of adolescent girls were central to the development of the study. Considering the specific issues that the YAG advised on (study recruitment, attrition and data collection), there was evidence of a positive impact of PPI. Patient or Public Contribution: Pupils from post‐primary schools interested/participating in the WISH Study were invited to attend YAG meetings. YAG meetings were set up to consult adolescent girls on the delivery, implementation and dissemination of the WISH intervention. [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]

Background: Patient and public involvement (PPI) has become increasingly important in the development, delivery and improvement of healthcare. PPI is used in healthcare innovation; yet, how it is used has been under‐reported. The aim of this scoping review is to identify and map the current available empirical evidence on the role of PPI during different stages of healthcare innovation. Methods: The scoping review was conducted in accordance with PRISMAScR and included any study published in a peer‐reviewed journal between 2004 and 2021 that reported on PPI in healthcare innovation within any healthcare setting or context in any country. The following databases were searched: Medline, EMBASE, CINAHL, PsycInfo, HMIC and Google Scholar. We included any study type, including quantitative, qualitative and mixed‐method studies. We excluded theoretical frameworks, conceptual, scientific or grey literature as well as discussion and opinion papers. Results: Of the 87 included studies, 81 (93%) focused on or were conducted by authors in developed countries. A wide range of conditions were considered, with more studies focusing on mental health (n = 18, 21%) and cancer care (n = 8, 9%). The vast majority of the studies focused on process and service innovations (n = 62, 71%). Seven studies focused on technological and clinical innovations (8%), while 12 looked at both technological and service innovations (14%). Only five studies examined systems innovation (5%) and one study looked across all types of innovations (1%). PPI is more common in the earlier stages of innovation, particularly problem identification and invention, in comparison to adoption and diffusion. Conclusion: Healthcare innovation tends to be a lengthy process. Yet, our study highlights that PPI is more common across earlier stages of innovation and focuses mostly on service innovation. Stronger PPI in later stages could support the adoption and diffusion of innovation. Patient or Public Contribution: One of the coauthors of the paper (S. S.) is a service user with extensive experience in PPI research. S. S. supported the analysis and writing up of the paper. [ABSTRACT FROM AUTHOR]

Introduction: Facilitators to implement shared cancer follow‐up care into clinical practice include mechanisms to allow the oncologist to continue overseeing the care of their patient, two‐way information sharing and clear follow‐up protocols for general practitioners (GPs). This paper aimed to evaluate patients, GPs and radiation oncologists (ROs) acceptance of a shared care intervention. Methods: Semi‐structured interviews were conducted pre‐ and post intervention with patients that were 3 years post radiotherapy treatment for breast, colorectal or prostate cancer, their RO, and their GP. Inductive and deductive thematical analysis was employed. Results: Thirty‐two participants were interviewed (19 patients, 9 GPs, and 4 ROs). Pre intervention, there was support for GPs to play a greater role in cancer follow‐up care, however, patients were concerned about the GPs cancer‐specific skills. Patients, GPs and ROs were concerned about increasing the GPs workload. Post intervention, participants were satisfied that the GPs had specific skills and that the impact on GP workload was comparable to writing a referral. However, GPs expressed concern about remuneration. GPs and ROs felt the model provided patient choice and were suitable for low‐risk, stable patients around 2–3 years post treatment. Patients emphasised that they trusted their RO to advise them on the most appropriate follow‐up model suited to their individual situation. The overall acceptance of shared care depended on successful health technology to connect the GP and RO. There were no differences in patient acceptance between rural, regional, and cancer types. ROs presented differences in acceptance for the different cancer types, with breast cancer strongly supported. Conclusion: Patients, GPs and ROs felt this shared cancer follow‐up model of care was acceptable, but only if the RO remained directly involved and the health technology worked. There is a need to review funding and advocate for health technology advances to support integration. Patient or Public Contribution: Patients treated with curative radiotherapy for breast, colorectal and prostate cancer, their RO and their GPs were actively involved in this study by giving their consent to be interviewed. [ABSTRACT FROM AUTHOR]

Background: Public involvement in health research and its translation is well recognized to improve health interventions. However, this approach is insufficiently practised and evidenced in relation to young people. This paper presents an analysis of the process of co‐producing a framework, partnership model and a growing network of young people informing and guiding an adolescent health research community of practice. Methods: A Living Lab is a participatory research approach that brings together a broad range of stakeholders in iterative cycles of research, design, development, pilot‐testing, evaluation and delivery to implement effective responses to complex phenomena. The geographical setting for this study was Sydney, NSW, Australia, and involved both youth and adult stakeholders from this region. The study spanned three phases between July 2018 and January 2021, and data collection included a range of workshops, a roundtable discussion and an online survey. Results: The co‐production process resulted in three key outputs: first, an engagement framework to guide youth participation in health research; second, a partnership model to sustain youth and adult stakeholder collaboration; third, the growth of the public involvement of young people with a range of projects and partners. Conclusions: This study investigated the process of co‐producing knowledge with young people in an adolescent health community of practice. A reflexive process supported youth and adult stakeholders to collaboratively investigate, design and pilot‐test approaches that embed young people's engagement in adolescent health research. Shared values and iterative methods for co‐production can assist in advancing mutual learning, commitment and trust in specific adolescent health research contexts. Public Contribution: Young people guiding and informing an adolescent health research community of practice were involved in this study, and one of the participants is a paper co‐author. [ABSTRACT FROM AUTHOR]

Introduction: The Nurture Early for Optimal Nutrition (NEON) study is a multiphase project that aims to optimize feeding, care and dental hygiene practices in South Asian children <2 years in East London, United Kingdom. The multiphase project uses a participatory learning and action (PLA) approach facilitated by a multilingual community facilitator. In this paper, we elaborate on the process and results of the Intervention Development Phase in the context of the wider NEON programme. Methods: Qualitative community‐based participatory intervention codevelopment and adaptation. Setting: Community centres in East London and online (Zoom) meetings and workshops. Participants: In total, 32 participants registered to participate in the Intervention Development Phase. Four Intervention Development workshops were held, attended by 25, 17, 20 and 20 participants, respectively. Results: Collaboratively, a culturally sensitive NEON intervention package was developed consisting of (1) PLA group facilitator manual, (2) picture cards detailing recommended and nonrecommended feeding, care and dental hygiene practices with facilitators/barriers to uptake as well as solutions to address these, (3) healthy infant cultural recipes, (4) participatory Community Asset Maps and (5) list of resources and services supporting infant feeding, care and dental hygiene practices. Conclusion: The Intervention Development Phase of the NEON programme demonstrates the value of a collaborative approach between researchers, community facilitators and the target population when developing public health interventions. We recommend that interventions to promote infant feeding, care and dental hygiene practices should be codeveloped with communities. Recognizing and taking into account both social and cultural norms may be of particular value for infants from ethnically diverse communities to develop interventions that are both effective in and accepted by these communities. Patient and Public Involvement and Engagement: Considerable efforts were placed on Patient/Participant and Public Involvement and Engagement. Five community facilitators were identified, each of which represented one ethnic/language group: (i) Bangladeshi/Bengali and Sylheti, (ii) Pakistani/Urdu, (iii) Indian/Gujrati, (iv) Indian/Punjabi and (v) Sri Lankan/Tamil. The community facilitators were engaged in every step of the study, from the initial drafting of the protocol and study design to the Intervention Development and refinement of the NEON toolkit, as well as the publication and dissemination of the study findings. More specifically, their role in the Intervention Development Phase of the NEON programme was to: 1.Support the development of the study protocol, information sheets and ethics application.2.Ensure any documents intended for community members are clear, appropriate and sensitively worded.3.Develop strategies to troubleshoot any logistical challenges of project delivery, for example, recruitment shortfalls.4.Contribute to the writing of academic papers, in particular reviewing and revising drafts.5.Develop plain language summaries and assist in dissemination activities, for example, updates on relevant websites.6.Contribute to the development of the NEON intervention toolkit and recruitment of the community members.7.Attend and contribute to Intervention Development workshops, ensuring the participant's voices were the focus of the discussion and workshop outcomes. [ABSTRACT FROM AUTHOR]

Introduction: People living with dementia experience communication difficulties. Personal information documents, or healthcare passports, enable communication of information essential for the care of a person with dementia. Despite the potential for providing person‐centred care, personal information documents are not ubiquitously used. The Capability Opportunity Motivation—Behaviour (COM‐B) model can be used to understand factors determining individuals' behaviours. Objectives: This study aimed to identify the barriers to and facilitators of the use of healthcare passports for people living with dementia through a systematic review methodology. Methods: A systematic search of six electronic databases was undertaken. Grey literature was searched using three databases. All study types reporting barriers to or facilitators of the use of personal information documents in the care of adults living with dementia in high‐income countries were included. Study quality was assessed using the NICE Quality Appraisal Checklist. Thematic synthesis was used to develop descriptive themes, which were subsequently mapped to the COM‐B framework. Results: Nineteen papers were included. Themes included training, awareness, embedding the process in norms and appreciating the value of the personal information documents. A broad range of barriers and facilitators was identified within each COM‐B domain. Conclusion: This framework provides a starting point for evidence‐informed initiatives to improve the use of personal information documents in the care of people with dementia. Patient and Public Contribution: This is a review of studies and did not involve patients or the public. Review results will guide evaluation of a local personal information document, which will be designed with input from the Dementia Champions Network (includes carers and other stakeholders). [ABSTRACT FROM AUTHOR]

Introduction: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well‐planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. Method: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities. Results: Six youth aged 19–34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision‐makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum. Conclusion: The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID‐19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision‐makers and partners. Patient or Public Contribution: This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript. [ABSTRACT FROM AUTHOR]

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

Background: There is limited evidence of genuine equal partnership where power is shared with young people with mental health difficulties throughout all research stages, particularly in data collection and analysis. Objective: To describe how our qualitative study, exploring young peoples' perceptions on the feasibility of using technology to detect mental health deterioration, was co‐produced using principles of co‐production, whilst reflecting on impact, challenges and recommendations. Methods: Young people with experience of mental health difficulties were appointed and then worked with researchers throughout all research stages. The study was evaluated against the five principles of co‐production. Reflections from researchers and young people were collected throughout. Results: Seven young people formed an initial Young People's Advisory Group (YPAG); three became co‐researchers. Reflection was key throughout the process. Sharing power became easier and more evident as trust, confidence and mutual respect grew over time, particularly after a safe space was established. The safe space was crucial for open discussions, and our WhatsApp group enabled continual communication, support and shared decision‐making. The resulting co‐produced topic guide, coding framework, thematic map, papers and presentations demonstrated significant impact. Conclusions: To our knowledge, this is the first qualitative mental health study to be co‐produced using the principles of co‐production. Our rigorous assessment can be utilized as an informative document to help others to produce meaningful co‐produced future research. Although co‐production takes time, it makes significant impact to the research, researchers and co‐researchers. Flexible funding for spontaneous suggestions from co‐researchers and more time for interview training is recommended. [ABSTRACT FROM AUTHOR]

Introduction: A person‐centred model of care, developed in the early days of the HIV epidemic when there were no effective treatments for HIV, led to relatively close relationships between carers and people living with HIV (PLWH). Our study examines the experiences of carers using a relational framework, exploring the traumas and challenges involved, coping practices instigated by carers and the emergence of 'relational traumatic growth' opportunities. Methods: Twenty‐two UK healthcare workers and charity volunteers working with PLWH from the early years of the epidemic were recruited. Semistructured interviews were used to elicit participants' own stories of working with PLWH, from their initial involvement to the present time, and their reflections on the personal impact of working in the field of HIV. Data were analysed using a thematic approach employing relational categories. Results: The impact of care was related to the formation of close relationships, identification with PLWH, high numbers of deaths and the difficulties and challenges encountered relationally. Participants described attempts to cope through informal and formal support, as well as endeavours to manage professional boundaries. Various ways of making sense of experiences were described, ranging from denial to abandoning the HIV field, to intense commitment. For some, traumatic experiences lead to validation, a search for personal meaning and managing the sense of loss with an exploration of further ventures, contributing to the achievement of relational traumatic growth. Conclusion: The intensity of relationships in HIV work, developed through the emotional and practical work of caring for PLWH, led healthcare workers and volunteers to experience a range of psychological consequences, both negative (including distress and emotional exhaustion) and also positive (such as acquiring a sense of purpose). Patient or Public Contribution: People living with HIV and those working with them were involved in the initial study conceptualization and design. The second and fourth authors of this paper were professionals working in HIV throughout the pandemic and have led on all aspects of the study. People living with HIV and those working with them additionally guided participant selection by suggesting participants and supporting recruitment. Narrative transcripts were checked and amended (if necessary) by participants. Initial findings were presented at the AIDS impact conference, where PLWH and those working with them attended and feedback on important ideas that helped to prioritize and shape the study findings. [ABSTRACT FROM AUTHOR]

Background: Medicines are often suboptimally managed for heart failure patients across the transition from hospital to home, potentially leading to poor patient outcomes. The Improving the Safety and Continuity Of Medicines management at Transitions of care programme included: understanding the problems faced by patients and healthcare professionals; developing and co‐designing the Medicines at Transitions of care Intervention (MaTI); a cluster randomized controlled trial testing the effectiveness of a complex behavioural MaTI aimed at improving medicines management at the interface between hospitals discharge and community care for patients with heart failure; and a process evaluation. The MaTI included a patient‐held My Medicines Toolkit; enhanced communication between the hospital and the patient's community pharmacist and increased engagement of the community pharmacist postdischarge. This paper reports on the patients' experiences of the MaTI and its implementation from the process evaluation. Design: Twenty one‐to‐one semi‐structured patient interviews from six intervention sites were conducted between November 2018 and January 2020. Data were analysed using the Framework method, involving patients as co‐analysts. Interview data were triangulated with routine trial data, the Consolidated Framework for Implementation Research and a logic model. Results: Within the hospital setting patients engaged with the toolkit according to whether staff raised awareness of the My Medicines Toolkit's importance and the time and place of its introduction. Patients' engagement with community pharmacy depended on their awareness of the community pharmacist's role, support sources and perceptions of involvement in medicines management. The toolkit's impact on patients' medicines management at home included reassurance during gaps in care, increased knowledge of medicines, enhanced ability to monitor health and seek support and supporting sharing medicines management between formal and informal care networks. Conclusion: Many patients perceived that the MaTI offered them support in their medicines management when transitioning from hospital into the community. Importantly, it can be incorporated into and built upon patients' lived experiences of heart failure. Key to its successful implementation is the quality of engagement of healthcare professionals in introducing the intervention. Patient or Public Contribution: Patients were involved in the study design, as qualitative data co‐analysts and as co‐authors. [ABSTRACT FROM AUTHOR]

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

Introduction: Engaging with patients about their lived experience of health and illness and their experience within the healthcare system can help inform the provision of care, health policies and health research. In the context of health research, however, operationalizing the levels of patient engagement is not straightforward. We suggest that a key challenge to the routine inclusion of patients as partners in health research is a lack of tangible guidance regarding how this can be accomplished. Methods: In this article, we provide guidance on how to codesign and operationalize a concrete patient engagement plan for any health research project. Results: We illustrate a seven‐step approach using the example of a national clinical trial in Canada and provide a patient engagement planning template for use in any health research project. Conclusion: Such concrete guidance should improve the design and reporting of patient engagement in health research. Patient or Public Contribution: The De‐Implementing Wisely Research group is informed by a national 9‐member patient partner council (PPC). The research team includes three lead patient partners who are coinvestigators on the grant that funds the program of research. Members of the council advise on all aspects of the study design and implementation. The ideas presented in this paper were informed by regular communication and planning with the PPC; specific contributions of lead patient partner authors are outlined as follows: Brian Johnston, Susan Goold and Vanessa Francis are patient partners with a wide breadth of experience in the healthcare system and health research projects. The guidance in this article draws on their lived and professional expertise. All patient partner authors contributed to the planning of the manuscript, participated in meetings to develop content and provided critical manuscript edits and comments on drafts. [ABSTRACT FROM AUTHOR]

All health-care systems are under financial pressure and many have therefore developed value frameworks to assist decision making regarding access to treatment. Unfortunately, many frameworks simply reflect the clinically focused values held by health-care professionals rather than outcomes that also matter to patients. It is difficult to define one single homogeneous set of patient values as these are shaped by social, religious and cultural factors, and health-care environment, as well as many factors such as age, gender, education, family and friends and personal finances. Instead of focusing on an aggregated set of values, frameworks should attempt to incorporate the broader range of outcomes that patients may regard as more relevant. Patient advocates are well placed to advise assessment bodies on how particular therapies will impact the patient population under consideration and should be closely involved in developing value frameworks. In this paper, a group of patient advocates explore the varying definitions of patient value and make positive recommendations for working together to strengthen the patient voice in this area. The authors call on framework developers, the patient advocacy and research communities, the health-care industry and decision-makers to undertake specific actions to ensure patient value is included in current and future value frameworks. This is justified on compassionate and economic grounds: better health outcomes result when patients receive treatment tailored to individual needs. Paying attention to the patient perspective also results in better use of resources-a goal that should appeal to all stakeholders. [ABSTRACT FROM AUTHOR]

Background: Demand is labelled 'clinically unnecessary' when patients do not need the levels of clinical care or urgency provided by the service they contact. Objective: To identify programme theories which seek to explain why patients make use of emergency and urgent care that is subsequently judged as clinically unnecessary. Design: Realist review. Methods: Papers from four recent systematic reviews of demand for emergency and urgent care, and an updated search to January 2017. Programme theories developed using Context‐Mechanism‐Outcome chains identified from 32 qualitative studies and tested by exploring their relationship with existing health behaviour theories and 29 quantitative studies. Results: Six mechanisms, based on ten interrelated programme theories, explained why patients made clinically unnecessary use of emergency and urgent care: (a) need for risk minimization, for example heightened anxiety due to previous experiences of traumatic events; (b) need for speed, for example caused by need to function normally to attend to responsibilities; (c) need for low treatment‐seeking burden, caused by inability to cope due to complex or stressful lives; (d) compliance, because family or health services had advised such action; (e) consumer satisfaction, because emergency departments were perceived to offer the desired tests and expertise when contrasted with primary care; and (f) frustration, where patients had attempted and failed to obtain a general practitioner appointment in the desired timeframe. Multiple mechanisms could operate for an individual. Conclusions: Rather than only focusing on individuals' behaviour, interventions could include changes to health service configuration and accessibility, and societal changes to increase coping ability. [ABSTRACT FROM AUTHOR]

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

Background: The engagement of community partners in equitable partnerships with academic teams is necessary to achieve health equity. However, there is no standardized approach to support bidirectional engagement among research stakeholders in the context of partnership equity at each phase of the research process. Objective: We describe the development of a systematic framework along with competencies and tools promoting bidirectional engagement and equity within community–academic partnerships at each phase of the research process. Design: We conducted a four‐step research process between November 2020 and December 2023 for framework development: (1) a narrative literature review; (2) expansion of existing bidirectional, equitable framework; (3) a scientific review with two groups of cognitive interviews (five community engagement researchers and five community leaders and members); and (4) three community‐based organization leader focus groups. Thematic analysis was used to analyse focus group data. Results: Using results of each step, the framework was iteratively developed, yielding four phases of the bidirectional engagement and equity (BEE) research framework: Relationship building and assessment of goals and resources (Phase I); form a community–academic partnership based on shared research interests (may include multilevel stakeholders) (Phase II); develop a research team comprising members from each partnering organization (Phase III); and implement the six‐step equitable research process (Phase IV). Bidirectional learning and partnership principles are at the core of the partnership, particularly in Phases II–IV. Competencies and tools for conducting an equitable, engaged research process were provided. Discussion: This conceptual framework offers a novel, stepwise approach and competencies for community–academic partners to successfully partner and conduct the research process equitably. Conclusion: The BEE research framework can be implemented to standardize the conduct of an equitable, engaged research process within a community–academic partnership, while improving knowledge and trust across partners and, ultimately, an increased return on investment and sustainability to benefit both partners in the area of health outcomes and ultimately health equity. Patient or Public Contribution: The development of this framework was co‐led with a community organization in which two leaders in the organization were equitably involved in each phase of the research process, including grant development, study design, participant recruitment, protocol development for focus groups and community and researcher review, framework design and content and dissemination of this manuscript as a co‐author. For grant development, the community leader completed the give‐get grid components for them as a partner. They also wrote up their lived experience in the research process for the progress report. For the focus groups, one community leader co‐led the focus group with the academic partner. For the narrative review, the community leaders did not actively conduct the narrative review but observed the process through the academic partners. One community leader wrote the section 'relationship building' and 'bidirectional learning' sections with the assistance of the academic partner, while they both equally provided input on other sections of the manuscript alongside academic partners. The community leaders have extensive experience in leading programmes, along with partnering with researchers to address health equity issues and improve health outcomes. [ABSTRACT FROM AUTHOR]

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

Introduction: Co‐design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co‐design is undertaken in‐person; however, exploring online delivery is warranted. PPIE in co‐design must be considered carefully, and assumptions that in‐person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence‐informed approaches to facilitating co‐design online. This study aimed to develop and evaluate a framework for authentically adapting health research co‐design into an online environment. Materials and Methods: The initial framework was developed through a literature review, synthesis of in‐person co‐design principles, and alignment of online strategies. The framework was then applied to a co‐design project with 10 participants across relevant PPIE groups (end‐users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician−researchers [n = 2]). Participants' experiences of the online co‐design process were evaluated via a mixed‐methods design using surveys and semi‐structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework. Results: The developed framework, Partnership‐focussed Principles‐driven Online co‐Design (P‐POD) was used to design eight 90 min online co‐design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P‐POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P‐POD framework is presented. Conclusion: With evaluation of the initial P‐POD framework showing evidence of adherence to co‐design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P‐POD framework may be used and evaluated within future intervention or service design. Patient or Public Contribution: This study involved the participants (end‐users, clinicians and service providers) in the co‐design process described, interpretation of the results through member‐checking interview responses, assisting in development of the final framework and as co‐authors for this manuscript. [ABSTRACT FROM AUTHOR]

Background & objectives: The comparative uses of different types of patient experience (PE) feedback as data within quality improvement (QI) are poorly understood. This paper reviews what types are currently available and categorizes them by their characteristics in order to better understand their roles in QI. Methods: A scoping review of types of feedback currently available to hospital staff in the UK was undertaken. This comprised academic database searches for "measures of PE outcomes" (2000‐2016), and grey literature and websites for all types of "PE feedback" potentially available (2005‐2016). Through an iterative consensus process, we developed a list of characteristics and used this to present categories of similar types. Main results: The scoping review returned 37 feedback types. A list of 12 characteristics was developed and applied, enabling identification of 4 categories that help understand potential use within QI—(1) Hospital‐initiated (validated) quantitative surveys: for example the NHS Adult Inpatient Survey; (2) Patient‐initiated qualitative feedback: for example complaints or twitter comments; (3) Hospital‐initiated qualitative feedback: for example Experience Based Co‐Design; (4) Other: for example Friends & Family Test. Of those routinely collected, few elicit "ready‐to‐use" data and those that do elicit data most suitable for measuring accountability, not for informing ward‐based improvement. Guidance does exist for linking collection of feedback to QI for some feedback types in Category 3 but these types  are not routinely used. Conclusion: If feedback is to be used more frequently within QI, more attention must be paid to obtaining and making available the most appropriate types. [ABSTRACT FROM AUTHOR]

Context Promoting patient participation in treatment decision making is of increasing interest to researchers, clinicians and policy makers. Decision aids (DAs) are advocated as one way to help achieve this goal. Despite their proliferation, there has been little agreement on criteria or standards for evaluating these tools. To fill this gap, an international collaboration of researchers and others interested in the development, content and quality of DAs have worked over the past several years to develop a checklist and, based on this checklist, an instrument for determining whether any given DA meets a defined set of quality criteria. Objective/Methods In this paper, we offer a framework for assessing the conceptual clarity and evidence base used to support the development of quality criteria/standards for evaluating DAs. We then apply this framework to assess the conceptual clarity and evidence base underlying the International Patient Decision Aids Standards (IPDAS) checklist criteria for one of the checklist domains: how best to present in DAs probability information to patients on treatment benefits and risks. Conclusion We found that some of the central concepts underlying the presenting probabilities domain were not defined. We also found gaps in the empirical evidence and theoretical support for this domain and criteria within this domain. Finally, we offer suggestions for steps that should be undertaken for further development and refinement of quality standards for DAs in the future. [ABSTRACT FROM AUTHOR]

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

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

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

Introduction: Healthcare professionals have an important role in advocating for the adoption of a brain‐healthy lifestyle for optimal multiple sclerosis (MS) care. Nonetheless, studies to date have mainly focussed on the consumer perspective. Herein, we aimed to explore the current practices of how healthcare professionals support protective, lifestyle‐related behaviour changes to optimise brain health among people living with MS (plwMS), and their perspectives of professional roles. Methods: Australian healthcare professionals were recruited via study advertisements, purposive and snowball sampling, to participate in an online, semi‐structured and audio‐recorded interview. Clinicians were eligible if they had a minimum of a tertiary Bachelor's degree and 12‐months experience working with plwMS, access to the Internet and sufficient time to participant. An inductive, data‐driven form of reflexive thematic analysis was undertaken before thematic categorisation of the quotes from transcripts. Data analysis was guided by the methods of Braun and Clark and the study's underpinnings drew on the constructs of the Social Cognitive Theory (SCT). Results: Six physicians, 10 MS nurses, 18 allied health professionals, one exercise therapist and one alternative therapist were interviewed. Three primary themes encompassing the perceived role of healthcare professionals in supporting a brain‐healthy lifestyle were identified: (1) the empowering role, (2) collaborative role and (3) communicative role. External factors/forces including time constraints, professional expertise, training and skill set, power dynamics, consumer readiness, health literacy, self‐efficacy and motivation are at play, and affect how/when healthcare professionals may support behaviour change to optimise lifelong brain health for plwMS. Conclusion: Healthcare professionals recognise their critical role in encouraging and supporting the adoption of a brain‐healthy lifestyle to optimise lifelong brain health for plwMS. However, discord is evident when they underestimate the complexity of translating knowledge of lifestyle‐related behaviour change(s) into action. Greater awareness must be made in recognising and addressing the bidirectionality of external factors such as those in the SCT, that may influence how behaviour change occurs. Public Contribution: Healthcare professionals volunteered to be interviewed as part of the data collection phase of this study. [ABSTRACT FROM AUTHOR]

Objectives: To identify, describe and synthesise the views and experiences of adults living with asthma regarding shared decision‐making (SDM) in the existing qualitative literature Methods: We conducted a comprehensive search of 10 databases (list databases) from inception until September 2023. Screening was performed according to inclusion criteria. Tools from the Joanna Briggs lnstitute were utilised for the purposes of data extraction and synthesis in this study. The data extraction process in this study employed the Capability, Opportunity and Motivation Model of Behaviour (COM‐B model) as a framework, and a pragmatic meta‐aggregative approach was employed to synthesise the collected results. Results: Nineteen studies were included in the metasynthesis. Three synthesised themes were identified: the capability of people living with asthma, the opportunities of people living with asthma in SDM, and the motivation of the people living with asthma in SDM. Conclusions: We have identified specific factors influencing people living with asthma engaging in SDM. The findings of this study can serve as a basis for the implementation of SDM in people living with asthma and provide insights for the development of their SDM training programs. The ConQual score for the synthesised findings was rated as low. To enhance confidence, future studies should address dependability and credibility factors. Practice Implications: This review contemplates the implementation of SDM from the perspective of people living with asthma, with the aim of providing patient‐centred services for them. The results of this review can benefit the implementation of SDM and facilitate information sharing. It offers guidance for SDM skills training among adults living with asthma, fosters a better doctor–patient relationship and facilitates consensus in treatment decisions, thereby enabling personalised and tailored medical care. Patient or Public Contribution: Three nursing graduate students participated in the data extraction and integration process, with two students having extensive clinical experience that provided valuable insights for the integration. [ABSTRACT FROM AUTHOR]

Background and Aim: Long Covid is often stigmatised, particularly in people who are disadvantaged within society. This may prevent them from seeking help and could lead to widening health inequalities. This coproduced study with a Community Advisory Board (CAB) of people with Long Covid aimed to understand healthcare and wider barriers and stigma experienced by people with probable Long Covid. Methods: An active case finding approach was employed to find adults with probable, but not yet clinically diagnosed, Long Covid in two localities in London (Camden and Merton) and Derbyshire, England. Interviews explored the barriers to care and the stigma faced by participants and were analysed thematically. This study forms part of the STIMULATE‐ICP Collaboration. Findings: Twenty‐three interviews were completed. Participants reported limited awareness of what Long Covid is and the available pathways to management. There was considerable self‐doubt among participants, sometimes reinforced by interactions with healthcare professionals (HCPs). Participants questioned their deservedness in seeking healthcare support for their symptoms. Hesitancy to engage with healthcare services was motivated by fear of needing more investigation and concerns regarding judgement about the ability to carry out caregiving responsibilities. It was also motivated by the complexity of the clinical presentation and fear of all symptoms being attributed to poor mental health. Participants also reported trying to avoid overburdening the health system. These difficulties were compounded by experiences of stigma and discrimination. The emerging themes reaffirmed a framework of epistemic injustice in relation to Long Covid, where creating, interpreting and conveying knowledge has varied credibility based on the teller's identity characteristics and/or the level of their interpretive resources. Conclusion: We have codeveloped recommendations based on the findings. These include early signposting to services, dedicating protected time to listening to people with Long Covid, providing a holistic approach in care pathways, and working to mitigate stigma. Regardless of the diagnosis, people experiencing new symptoms must be encouraged to seek timely medical help. Clear public health messaging is needed among communities already disadvantaged by epistemic injustice to raise awareness of Long Covid, and to share stories that encourage seeking care and to illustrate the adverse effects of stigma. Patient or Public Contribution: This study was coproduced with a CAB made up of 23 members including HCPs, people with lived experience of Long Covid and other stakeholders. [ABSTRACT FROM AUTHOR]

Background: The involvement of people with lived experience (LEX) workers in the development, design, and delivery of integrated health services seeks to improve service user engagement and health outcomes and reduce healthcare gaps. Yet, LEX workers report feeling undervalued and having limited influence on service delivery. There is a need for systematic improvements in how LEX workforces are engaged and supported to ensure the LEX workforce can fully contribute to integrated systems of care. Objective: This study aimed to operationalize the Consolidated Framework for Implementation Research (CFIR) using a rigorous scoping review methodology and co‐creation process, so it could be used by health services seeking to build and strengthen their LEX workforce. Search Strategy: A systematic literature search of four databases was undertaken to identify peer‐reviewed studies published between 2016 and 2022 providing evidence of the inclusion of LEX workers in direct health service provision. Data Extraction and Synthesis: A descriptive‐analytical method was used to map current evidence of LEX workers onto the CFIR. Then, co‐creation sessions with LEX workers (n = 4) and their counterparts—nonpeer workers (n = 2)—further clarified the structural policies and strategies that allow people with LEX to actively participate in the provision and enhancement of integrated health service delivery. Main Results: Essential components underpinning the successful integration of LEX roles included: the capacity to engage in a co‐creation process with individuals with LEX before the implementation of the role or intervention; and enhanced representation of LEX across organizational structures. Discussion and Conclusion: The adapted CFIR for LEX workers (CFIR‐LEX) that was developed as a result of this work clarifies contextual components that support the successful integration of LEX roles into the development, design, and delivery of integrated health services. Further work must be done to operationalize the framework in a local context and to better understand the ongoing application of the framework in a health setting. Patient or Public Contribution: People with LEX were involved in the operationalization of the CFIR, including contributing their expertise to the domain adaptations that were relevant to the LEX workforce. [ABSTRACT FROM AUTHOR]

Background: Experiential knowledge can aid in designing research by highlighting what an idea looks like from a patient and carer perspective. Experiential knowledge can be emotional, and this can create challenges at formal research meetings. Objective: The aim of this study was to consider the role of emotions in public involvement. Methods: This is a conceptual review informed by relevant literature and reflection within the author team. A structured Scopus search was conducted in November 2021 and December 2022, identifying 18 articles that presented findings from patient and public involvement (PPI) research related to 'emotion'. We complemented the search with theory‐generating articles related to the role of emotion and emotional labour in human life. Findings: Study findings from the structured search were tabulated to identify recurring themes; these were as follows: emotional connections to the research topic can cause stressful as well as cathartic experiences of PPI, 'emotional work' is part of PPI when people are contributing with their experiential knowledge and the emotional aspect of 'lived experience' needs to be recognised in how PPI is planned and facilitated. These points were considered in relation to theoretical works and experiences within the author team. Discussion: 'Emotion work' is often required of public collaborators when they contribute to research. They are asked to contribute to research alongside researchers, with knowledge that often contains emotions or feelings. This can be both upsetting and cathartic, and the environment of the research study can make the experience worse or better. Conclusions: The emotional component of experiential knowledge can be challenging to those invited to share this knowledge. It is imperative that researchers, research institutions and health and care professionals adjust research meeting spaces to show an awareness of the emotional labour that is involved in PPI. Patient or Public Contribution: This review was initiated after a meeting between carers and family members of residents in care homes and researchers. The review is co‐written by a group of three researchers and three carers and family members. Regular online meetings were held during the draft stages to incorporate people's views and ideas. Data extracted from the review were presented to the group of public collaborators in a variety of formats (e.g., posters, slideshows, text and verbally) to facilitate shared sense‐making and synthesis of the literature. [ABSTRACT FROM AUTHOR]

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

Background If research addresses the questions of relevance to patients and clinicians, decision-makers will be better equipped to design and deliver health services which meet their needs. To this end, a number of initiatives have engaged patients and clinicians in setting research agendas. This paper aimed to scope the research literature addressing such efforts. Methods A systematic search strategy combined electronic searches of bibliographic databases with handsearching and contacting key authors. Two researchers, initially working independently, described the relevant reports. Findings Over 250 studies addressed patients' or clinicians' priorities for research and outcomes for assessment. This literature described different routes for patients and clinicians to contribute to research agendas. Two-thirds of the studies addressing patients' or clinicians' research questions were applicable across health care, with the remainder focussed on specific health conditions. The 27 formal studies of patient involvement revealed a literature that has grown in the last decade. Although only nine studies engaged patients and clinicians in identifying research questions together, they show that methods have advanced over time, with all of them engaging participants directly and repeatedly in facilitated debate and most employing formal decision-making procedures. Conclusion A sizeable literature is available to inform priorities for research and the methods for setting research agendas with patients and clinicians. We recommend that research funders and researchers draw on this literature to provide relevant research for health service decision-makers. [ABSTRACT FROM AUTHOR]

Key policy drivers worldwide include optimizing patients' roles in managing their care; focusing services around patients' needs and preferences; and providing information to support patients' contributions and choices. The term information need penetrates many policy documents. Information need is espoused as the foundation from which to develop patient-centred or patient-led services. Yet there is no clear definition as to what the term means or how patients' information needs inform and shape information provision and patient care. The assimilation of complex theories originating from information science has much to offer considerations of patient information need within the context of health care. Health-related research often focuses on the content of information patients prefer, not why they need information. This paper extends and applies knowledge of information behaviour to considerations of information need in health, exposing a working definition for patient information need that reiterates the importance of considering the patient's goals and understanding the patient's context/situation. A patient information need is defined as ' recognition that their knowledge is inadequate to satisfy a goal, within the context/ situation that they find themselves at a specific point in the time'. This typifies the key concepts of national/international health policy, the centrality and importance of the patient. The proposed definition of patient information need provides a conceptual framework to guide health-care practitioners on what to consider and why when meeting the information needs of patients in practice. This creates a solid foundation from which to inform future research. [ABSTRACT FROM AUTHOR]

Introduction: Effective consumer engagement practices can enhance patient safety. This is important for consumers from ethnic minority backgrounds who are exposed to increased risk of patient safety events. Using the Systems Engineering Initiative for Patient Safety model, this study explored staff experiences of creating opportunities for engagement with consumers from ethnic minority backgrounds to contribute to their cancer care safety. Method: A qualitative study was conducted using semistructured interviews with cancer service staff from four cancer services across two states in Australia. Purposive sampling was used to recruit healthcare staff from a diverse range of professions. Data were analysed using the Framework Analysis method. Results: Fifty‐four interviews were conducted with healthcare staff. Analysis of the qualitative interview data identified enablers and associated challenges that contributed to creating a shared understanding between consumers and staff of the information, processes, expectations and problems arising in care. Enablers and challenges are reported in relation to four themes: (1) co‐creating safety through shared understanding of care processes; (2) tools and technologies support planned communication; (3) organisational policy levers exist but lack implementation in direct care and (4) formal tasks incorporate consumer engagement more readily than informal interactions. Conclusion: The availability of infrastructure and resources to support communication with consumers from ethnic minority backgrounds was limited to specific tasks across the cancer care continuum. Strategies implemented by health services to foster effective communication during formal interactions now require expansion to support and create conditions for effective consumer engagement during informal and everyday care tasks. The use of innovative language support tools and cultural considerations are required at the service and system level to support consumer engagement in all types of care interactions. Public and Patient Involvement: The study was embedded within a larger project that included a consumer investigator and was guided by a consumer advisory group (CAG). These consumer team members have lived experience of cancer and are from diverse ethnic backgrounds. CAG members provided feedback on the draft interview guide and participant information for this study. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision‐making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision‐making about their care varies. We aimed to co‐design the EMBED‐Care Framework, to enhance shared decision‐making between people affected by dementia and practitioners. Methods: A theory and evidence driven co‐design study was conducted, using iterative workshops, informed by a theoretical model of shared decision‐making and the EMBED‐Care Framework (the intervention) for person‐centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision‐support tools to support shared decision‐making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision‐making, and the requirements for use, presented as a logic model. Results: Five co‐design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision‐making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. Conclusions: The intervention developed sought to enhance shared decision‐making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face‐to‐face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work. [ABSTRACT FROM AUTHOR]

Introduction: This study developed a proposed set of person‐centred quality indicators (PC‐QIs) for services that assess older adults' care and support needs to determine their eligibility to receive government‐funded aged care services in Australia. Individual proposed PC‐QIs amenability for change within current organizational structures were explored. Barriers and opportunities to adapt service elements of the aged care assessment service to better align with the intent of the proposed PC‐QIs were identified. Methods: A mixed methods study was conducted over five phases. A scoping review identified domains of quality for aged care services as perceived by older adults. Service elements of an aged care assessment service were mapped alongside quality domains informing key attributes of each quality domain. Self‐determination theory was used to formulate each proposed PC‐QI to align with key attributes and quality domains. Consultation with a consumer group enabled revision of the proposed PC‐QIs. A focus group with clinicians evaluated the amenability of each proposed PC‐QI for change and identified barriers and opportunities to better align service elements with older adults' perceptions of quality. Results were informed by qualitative and quantitative data from a structured focus group. Focus group discussions were audio recorded and subsequently transcribed verbatim. Qualitative data were analyzed using a deductive thematic approach by two independent researchers. Results: Twenty‐four proposed PC‐QIs were developed. Refinement to descriptors of the proposed PC‐QIs were made by the consumer group (n = 18) and all were affirmed as being amenable to change by aged care assessors. Barriers in meeting the intent of the proposed PC‐QIs were identified across five domains including: health care staff knowledge (18.7%; n = 3); clear communication (31%; n = 5); person‐centred approach (18.7%; n = 3); respect for client (18.7%; n = 3); and collaborative partnership with client (12%; n = 2). Participants made 21 recommendations. Of the five service elements in delivering an aged care assessment service, barriers in meeting the intent of the proposed PC‐QIs were identified at the intake and booking of an assessment and during the assessment. Conclusions: Recommendations identified provide assessment services guidance on ways to adapt service elements to better align with older adults' perceptions of quality. Patient and Public Contribution: Patients and carers were involved as collaborators in this project at the protocol stage which included participating in discussions regarding the refining and modification of the protocol, refinement of the proposed PC‐QIs, data collection forms and supplementary information for participants. [ABSTRACT FROM AUTHOR]

Introduction: Many older people live with both multiple long‐term conditions and frailty; thus, they manage complex medicines regimens and are at heightened risk of the consequences of medicines errors. Research to enhance how people manage medicines has focused on adherence to regimens rather than on the wider skills necessary to safely manage medicines, and the older population living with frailty and managing multiple medicines at home has been under‐explored. This study, therefore, examines in depth how older people with mild to moderate frailty manage their polypharmacy regimens at home. Methods: Between June 2021 and February 2022, 32 patients aged 65 years or older with mild or moderate frailty and taking five or more medicines were recruited from 10 medical practices in the North of England, United Kingdom, and the CARE 75+ research cohort. Semi‐structured interviews were conducted face to face, by telephone or online. The interviews were recorded, transcribed verbatim and analysed using reflexive thematic analysis. Findings: Five themes were developed: (1) Managing many medicines is a skilled job I didn't apply for; (2) Medicines keep me going, but what happened to my life?; (3) Managing medicines in an unclear system; (4) Support with medicines that makes my work easier; and (5) My medicines are familiar to me—there is nothing else I need (or want) to know. While navigating fragmented care, patients were expected to fit new medicines routines into their lives and keep on top of their medicines supply. Sometimes, they felt let down by a system that created new obstacles instead of supporting their complex daily work. Conclusion: Frail older patients, who are at heightened risk of the impact of medicines errors, are expected to perform complex work to safely self‐manage multiple medicines at home. Such a workload needs to be acknowledged, and more needs to be done to prepare people in order to avoid harm from medicines. Patient and Public Involvement: An older person managing multiple medicines at home was a core member of the research team. An advisory group of older patients and family members advised the study and was involved in the first stages of data analysis. This influenced how data were coded and themes shaped. [ABSTRACT FROM AUTHOR]

Background: Starting in the 1990s in the United States, individuals with lived experience of mental health crises and recovery have been employed as peer support workers (PSWs) internationally. However, the implementation of PSW in clinical contexts remains challenging. Methods: This manuscript presents and discusses the methodological framework of the ImpPeer‐Psy5 study on the PSW implementation in the German mental healthcare sector. This study used a mixed‐methods and collaborative research approach, as well as participatory research strategies. After describing the study design, populations, teamwork and assessments, the epistemic challenges of its methodological framework will be critically discussed and how it has iteratively shaped the object of study. Discussion and Practical Implications: The healthcare, policy and funding context of PSW implementation as well as the study's methodological framework have differently influenced the ways in which the implementation of PSW has been conceived in this study. The choice of a collaborative or participatory methodological framework is advised to better align research questions and procedures to the specific needs and challenges of PSWs and other stakeholders concerned with PSW implementation. Patient and Public Contribution: The research team of the ImpPeer‐Psy5 study was collaboratively staffed by a portion of researchers who also identify as users or survivors of psychiatric services. A nonprofit organization for the training of PSWs served as a practice partner throughout the research process. Different participatory formats involve a significant number of diverse stakeholders relevant to PSW implementation. [ABSTRACT FROM AUTHOR]

Background: Persistent somatic symptoms (PSS) frequently remain under‐treated in health care settings. Evidence‐based services that lead affected individuals to early guideline‐based care are currently missing. This study aimed to identify the needs of those affected concerning an internet‐based guide. The second aim was to evaluate public and patient involvement (PPI). Methods: Participants experiencing PSS for at least 6 months were recruited via hospitals, psychotherapeutic practices and self‐help organizations. Qualitative data were gathered via ideation discussions and prioritization tasks. Thematic analysis was conducted to gain insight on the needs of people with lived experiences. PPI was quantitatively evaluated with the Public and Patient Engagement Evaluation Tool. Results: A total of 12 individuals participated (eight females, ages 22–66 years, duration of symptoms 1–43 years). Participants wanted to feel more supported, validated, in control and engaged with managing their health. Content‐related preferences included education, self‐help, social support and contact addresses. The majority of participants (>90%) experienced their involvement as worthwhile. Conclusions: To the best of our knowledge, this is one of the first studies describing PPI in intervention development for PSS. The involvement was perceived as a valuable contribution to the development process. Patient or Public Contribution: Adults with lived experiences were involved at the level of collaboration through the establishment of a participatory research team (PRT) and at the level of consultation through a workshop series, including one of the coauthors. They were involved in developing and validating intervention material and checking data interpretation. [ABSTRACT FROM AUTHOR]

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

Background: There is limited research on what, when and how outcomes should be measured in psychological therapy trials in acute mental health inpatient wards. Objectives: This study aimed to consider what outcomes service users think are important to measure. Methods: This qualitative study explored the views of 14 participants, who had an inpatient admission within the last year, on outcomes of psychological therapies using semistructured interviews. Data were analysed using thematic analysis from a critical realist perspective with both inductive and deductive coding. Results: The 126 outcomes that were important to participants were mapped onto an established taxonomy of outcomes across different health areas and the socioecological framework to consider the wider context and help summarise the outcomes. Most of the outcomes were mapped to the intrapersonal and interpersonal level. In addition to the outcome mapping, three themes were constructed from the qualitative data: (1) I am not a problem I am a person, (2) Feeling cared for and loved, (3) What does getting better look like. Conclusions: Our results highlight the need for patient‐reported outcomes which are cocreated with service users, disseminating research and training on preventing dehumanising experiences, enhancing psychological safety and therapeutic relationships and improving access to psychological therapy. Patient or Public Contribution: The wider People with Personal Experience Involvement Committee at the University of Bath were consulted which included a focus group during the early planning stages. We also collaborated with a person with personal experience, at every stage of the research. This included developing our research question and aims, protocol, participant documents (e.g., information and debrief forms), advertisement and recruitment strategy, interview topic guide, the codes, the final themes and quotes and reviewing the manuscript. People with lived experience of being admitted to an acute mental health inpatient ward participated in our study. [ABSTRACT FROM AUTHOR]

Background: Despite the availability of effective evidence‐based treatments for depression and anxiety, many ‘harder‐to‐reach’ social and patient groups experience difficulties accessing treatment. We developed a complex intervention, the AMP (Improving Access to Mental Health in Primary Care) programme, which combined community engagement (CE), tailored (individual and group) psychosocial interventions and primary care involvement. Objectives: To develop and evaluate a model for community engagement component of the complex intervention. This paper focuses on the development of relationships between stakeholders, their engagement with the issue of access to mental health and with the programme through the CE model. Design: Our evaluation draws on process data, qualitative interviews and focus groups, brought together through framework analysis to evaluate the issues and challenges encountered. Setting & participants: A case study of the South Asian community project carried out in Longsight in Greater Manchester, United Kingdom. Key findings: Complex problems require multiple local stakeholders to work in concert. Assets based approaches implicitly make demands on scarce time and resources. Community development approaches have many benefits, but perceptions of open‐ended investment are a barrier. The time‐limited nature of a CE intervention provides an impetus to ‘do it now’, allowing stakeholders to negotiate their investment over time and accommodating their wider commitments. Both tangible outcomes and recognition of process benefits were vital in maintaining involvement. Conclusions: CE interventions can play a key role in improving accessibility and acceptability by engaging patients, the public and practitioners in research and in the local service ecology. [ABSTRACT FROM AUTHOR]

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