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Background: Collaborations between patient organisations (POs) and the pharmaceutical industry can help identify and address the unmet needs of people living with a disease. In Alzheimer's disease (AD), the scale and complexity of the current unmet needs call for a broad and cross‐sectoral collaboration, including people living with Alzheimer's (PLWA), their care partners and the wider research community. Objective: This study aimed to describe learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council, a collaboration between POs and Roche, convened to better understand the unmet needs of PLWA and their care partners. Results: 1. Learnings from the collaboration, including clarifying objectives and members' expectations upfront, and establishing a set of guiding values and engagement principles. 2. Insights and recommendations for improving care in AD, including a wide range of unmet needs and potential solutions, systematically captured throughout the PLWA journey. These have resulted in several published reports and other outcomes, including (1) 'Portraits of care', highlighting the role of care partners, and the impact of coronavirus disease 2019 on care; (2) Clinical trial guidebook, recommending how PLWA and care partner experience can be incorporated into trial design; (3) 'Commitments Catalogue', highlighting progress by governmental organisations in achieving their commitments; and (4) a report to guide policy on improving diversity, equity and inclusion in clinical trials. Conclusions: Close collaboration between POs and the pharmaceutical industry in AD can enable effective research, in which PLWA and care partners are engaged as 'experts through experience' to help identify key unmet needs and co‐create solutions with the wider AD research community. This paper and the work undertaken by the F.A.S.T. Council may act as a blueprint for meaningful collaboration between POs and the pharmaceutical industry. Patient or Public Contribution: The paper reports the collaboration between POs, the F.A.S.T. Council and Roche to progress towards a future in which PLWA can live fulfilling lives with their disease managed well. Clinical Trial Registration: Not applicable. [ABSTRACT FROM AUTHOR]

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long‐term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high‐risk situations, leading to hypervigilance and paternalistic approaches to care. Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write‐up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors. [ABSTRACT FROM AUTHOR]

Introduction: Many studies have investigated patients' understandings of how to optimise mental health services. However, only a few studies in the Italian context have involved experts by experience (EbEs), who can be ex‐users, family members of ex‐users or current service collaborators. Their role is crucial in implementing collaborative service quality assessment projects. Method: The study investigated the experience of 35 EbEs, users, and family members who carried out a 9‐month fortnightly project aimed at imagining an 'ideal service'. The facilitators of the discussion groups (two EbEs) were interviewed; written reports of each meeting were produced with relevant comments, notes and specific suggestions; and content analysis was applied. Results: The most important result concerns the effectiveness of the project management method and group leadership carried out by the two EbEs. This approach allowed for complete autonomy of the work, without professional gaze or power imbalance. Also, the ideas and specific contents focused on by the two groups offer strategies to facilitate users' entry and reception in health care centres, to reduce the stigma of mental illness, to improve the centres' physical environment, to improve organisational aspects, to keep family members actively involved and to network mental health services with other territorial services. Conclusions: EbEs have proven to be key figures in ensuring equity of role in the service co‐design process. This also concerns a context, the Italian one, where their role has not yet been recognised and legalised. Their contribution and ideas to improve services could be fundamental not only in mental health centres, but also in other health facilities, and could concern the entire service delivery process rather than being limited to quality assurance, according to a virtuous circle based on active participation and transformation of the role of users. Patient or Public Contribution: This work resulted from close collaboration between the two EbEs who conducted the groups, users and family members, the university, and the psychiatrist in charge of the service. All of them contributed to the research. The EbEs, researchers and psychiatrist participated in the interpretation of the data and are the co‐authors of this paper. [ABSTRACT FROM AUTHOR]

Background: This paper aims to explore the impact of recovery education on recovery knowledge, attitudes and the quality of life of students undertaking recovery education, contributing to the evidence base in relation to the impact of recovery education. It also explores the experiences of all stakeholders involved in the co‐facilitation, delivery and participation in recovery education. Setting and Participants: This study evaluates the experiences of stakeholders involved in the co‐facilitation, delivery and participation in recovery education across four recovery colleges in Ireland. Participants included students undertaking recovery education, peer educators, education facilitators, recovery college coordinators and practitioner/service providers. Discussion: Findings from the quantitative survey when compared with extant literature suggest that students had a good understanding of recovery education. The social aspect of empowerment for growth and wellbeing was identified through themes relating to co‐production and facilitating student learning. Support for equitable access to recovery education, including co‐production for both the public and staff, was identified as a challenge for the future. Conclusion: The findings from both the qualitative and quantitative components of the study show the positive impact of recovery education on stakeholders while acknowledging the need for ongoing support for people working in recovery education and the development of services. In particular, there was a high level of recovery knowledge found in students undertaking recovery education. Patient or Public Contribution: This study utilised a co‐created study design. From inception a steering group comprising stakeholders (peer educators, recovery education facilitators including past recovery college students and nonpeer staff involved in the co‐production of recovery education) directed the conduct of the evaluation. This steering group participated in an iterative process of information sharing, suggestions for evaluation process and language. [ABSTRACT FROM AUTHOR]

Introduction: Co‐production with communities is increasingly seen as best practice that can improve the quality, relevance and effectiveness of research and service delivery. Despite this promising position, there remains uncertainty around definitions of co‐production and how to operationalize it. The current paper describes the development of a co‐production strategy to guide the work of the ActEarly multistakeholder preventative research programme to improve children's health in Bradford and Tower Hamlets, UK. Methods: The strategy used Appreciative Inquiry (AI), an approach following a five‐step iterative process: to define (Step 1) scope and guide progress; to discover (Step 2) key issues through seven focus groups (N = 36) and eight in‐depth interviews with key stakeholders representing community groups, and the voluntary and statutory sectors; to dream (Step 3) best practice through two workshops with AI participants to review findings; to design (Step 4) a co‐production strategy building on AI findings and to deliver (Step 5) the practical guidance in the strategy. Results: Nine principles for how to do co‐production well were identified: power should be shared; embrace a wide range of perspectives and skills; respect and value the lived experience; benefits should be for all involved parties; go to communities and do not expect them to come to you; work flexibly; avoid jargon and ensure availability of the right information; relationships should be built for the long‐term; co‐production activities should be adequately resourced. These principles were based on three underlying values of equality, reciprocity and agency. Conclusion: The empirical insights of the paper highlight the crucial importance of adequate resources and infrastructure to deliver effective co‐production. This documentation of one approach to operationalizing co‐production serves to avert any misappropriations of the term 'co‐production' by listening to service users, stakeholders and other relevant groups, to develop trust and long‐term relationships, and build on the learning that already exists amongst such groups. Patient or Public Contribution: The work was overseen by a steering group (N = 17) of individuals, both professional and members of the public with experience in undertaking co‐production, and/or with some knowledge of the context of the two ActEarly field sites, who provided regular oversight and feedback on the AI process. [ABSTRACT FROM AUTHOR]

Aims: The aim of this study is to evaluate the nurses' experiences with the Nursing Crisis Meetings and to identify nurses' needs regarding the future governance structure. Design: Qualitative study. Methods: Two focus groups were conducted in February 2022 with participants of the Nursing Crisis Meetings (N = 15). We used thematic analysis to describe themes. Results: We identified five themes: opportunity to speak up, call for nursing leadership, call for control over practice and autonomy, development of a governance infrastructure and development of the professional nurse role. Conclusion: Nurses experienced the Nursing Crisis Meetings to be a positive and empowering infrastructure, which facilitates the unique opportunity to speak up and share experiences and concerns. This new infrastructure is a promising strategy to engage nurses during a pandemic and to build on a professional governance structure. Impact: This paper highlights the need for nurses to speak up and be engaged during the COVID‐19 pandemic and gives a practical example of how to put this infrastructure into practice. [ABSTRACT FROM AUTHOR]

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

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

Background: Psychiatric rehospitalization is a complex phenomenon in need of more person‐centred approaches. The current paper aimed to explore how community‐based actions and daily life influence mental health and rehospitalization. Design, setting and participants: The qualitative study included focus group data from six European countries including 59 participants. Data were thematically analysed following an inductive approach deriving themes and subthemes in relation to facilitators and barriers to mental health. Results: Barriers consisted of subthemes (financial difficulty, challenging family circumstances and stigma), and facilitators consisted of three subthemes (complementing services, signposting and recovery). The recovery subtheme consisted of a further five categories (family and friends, work and recreation, hope, using mental health experience and meaning). Discussion: Barriers to mental health largely related to social determinants of mental health, which may also have implications for psychiatric rehospitalization. Facilitators included community‐based actions and aspects of daily life with ties to personal recovery. By articulating the value of these facilitators, we highlight benefits of a person‐centred and recovery‐focused approach also within the context of psychiatric rehospitalization. Conclusions: This paper portrays how person‐centred approaches and day‐to‐day community actions may impact psychiatric rehospitalization via barriers and facilitators, acknowledging the social determinants of mental health and personal recovery. Patient or public contribution: The current study included participants with experience of psychiatric rehospitalization from six different European countries. Furthermore, transcripts were read by several of the focus group participants, and a service user representative participated in the entire research process in the original study. [ABSTRACT FROM AUTHOR]

Background: Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under‐supported in clinical settings and research. Objectives: This study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient‐led research process. Methods: Trained patient researchers conducted this study by engaging peers via semi‐structured interviews and focus groups in a three‐step co‐design process. Participants (n = 9) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT), refined themes and made recommendations for healthcare system change (REFLECT). Results: Themes that emerged included: 'Experimenting with Food', 'Evolution Over Time', 'Diet Changes are Emotional' and 'Role of Stigma'. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients. Conclusion: Participants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food. Patient or Public Contribution: The first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer‐to‐peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co‐lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants. [ABSTRACT FROM AUTHOR]

In a previous series of papers (Sutherland, Dicks, Everard, & Geneletti,), we summarise the use of a range of social science methods in conservation decision‐making. Moon et al. () claim that the special feature risks narrowing the scope of social science research and suggest that we presented a limited perspective on the field. They thereby criticise the special feature for not doing something that it never intended to do in the first instance. We did not claim that the list of articles covered in the special feature is a comprehensive list (which it obviously is not) and we are unclear why anyone would think it is.While we consider the Moon et al. () paper to be a useful contribution for conservation scientists as a supplementary paper, it serves less as a critique to the special feature. Moon et al.('s () paper makes very few direct and substantive criticisms of points raised in the special feature. We respond to areas of contention referring specifically to research philosophy, bias, and data reporting.Moon et al. () criticise the set of papers for perpetuating an objectivist view of the world. We believe that it would be rather disconcerting for the research community if there were no social truths to discover. Rather, social science research methods conducted in specific places can be good ways of exploring how truths vary in different contexts.We also note that Moon et al. () completely missed the point we were trying to make about psychological biases, which are quite different to the issues associated with researcher bias highlighted by them.We encourage readers to pay close attention to the use of social science methods in conservation science. We reiterate, however, that the main purpose of the special feature was to ensure that social science methodologies for decision‐making are accessible for all conservation scientists to use, regardless of disciplinary background. [ABSTRACT FROM AUTHOR]

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

Paediatric burns are a major public health issue because of long‐term physical, psychological and social consequences and the high cost of treatment. The aim of this study was to design and evaluate a mobile‐based self‐management application for caregivers of children with severe burns. A participatory design technique was employed to develop the Burn application, which included three main phases: the determination of application requirements, the design and evaluation of the low‐fidelity prototype, and the design and evaluation of the high‐fidelity prototypes. In the first phase, application requirements were determined via validated paper questionnaires using the Delphi technique. In the second step, a low‐fidelity prototype was prepared using conceptual models and evaluated through a focus group with specialists. Seven specialists reviewed the application and evaluated how this prototype meets functional requirements and objectives. The third phase was performed in three stages. First, the high‐fidelity prototype was designed and developed by the JAVA programming language. Second, a cognitive walk‐through was carried out to show how users can interact with the mobile application and how it works. Third, this program was installed on the mobile phones of 28 caregivers of burned children, eight IT experts, and two general surgeries, and the prototype's usability was evaluated. In the present study, most caregivers of children with burns stated that after discharge, they face problems regarding infection control and wound care (4.07) and how to perform physical activity (4.12). User registration, educational materials, caregiver‐clinician communication, chat box, and appointment booking, safe login were the most important characteristic of the Burn application. Mean usability evaluation scores were in the range of 7.92 ± 0.238 to 8.10 ± 0.103, which is considered at a "good" level. From the Burn program design experience, it can be concluded that co‐design with health care specialists can significantly support and meet the specialists' and patients' needs and ensure the program's usefulness. In addition, application evaluation by users involved and not involved in the application design process can help enhance usability. [ABSTRACT FROM AUTHOR]

Novel forms of assisted gestation—uterus transplantation and artificial placentas—are highly anticipated in the ethico‐legal literature for their capacity to enhance reproductive autonomy. There are also, however, significant challenges anticipated in the development of novel forms of assisted gestation. While there is a normative exploration of these challenges in the literature, there has not yet, to my knowledge, been empirical research undertaken to explore what reproductive rights organisations and advocates identify as potential benefits and challenges. This perspective is invaluable. These organisations/individuals have an awareness not only of the needs of individuals but also of the political landscape in which regulatory decisions are made and which individuals navigate when seeking reproductive assistance. In this study, data was generated from two semi‐structured focus groups (n = 11). Reflective thematic analysis was used to examine the views raised by study participants in these focus groups. This paper explores two of the themes constructed in the data. First, the equality‐enhancing potential of assisted gestation exploring the multifaceted ways in which assisted gestation has structural benefits for marginalised groups. Second, realising the equality‐enhancing potential of assisted gestation explores the intersecting barriers to access to reproductive technologies and how they may impede the benefits of these technologies in practice. These results can enhance conceptual understanding of the importance of novel forms of assisted gestation and ensure that attention is paid to practical barriers in further normative research. [ABSTRACT FROM AUTHOR]

Aim: This paper aims to explore professional caregivers' experiences of psychosocial care for older persons living in nursing homes following the professional caregivers' participation in the International Caregiver Development Programme (ICDP). Design: A qualitative study. Methods: About 15 focus group interviews and 25 participatory observations of five ICDP group courses were conducted with 31 employees in nursing homes, including registered nurses, enrolled nurses and nursing aids. The findings emerged through hermeneutic analysis. Results: Main findings: (i) Adjusting the communication to the residents' psychosocial needs, (ii) Seeing the residents as individuals and (iii) Adjusting to individual interaction with the residents. The professional caregivers experienced that the residents participated more in communication, interaction and activities, in addition to be more satisfied, calm, happy and thankful in interaction with the caregivers. Furthermore, they described that the environment in the units became calmer and that they were considering psychosocial care before medication. Work‐related stress seems to impact ICDP participation and may be a barrier to implementation. [ABSTRACT FROM AUTHOR]

Background and aim: Patient and public involvement (PPI) has potential to enhance health‐care research and is increasingly an expectation, particularly for many funding bodies. However, PPI can be tokenistic, which may limit this potential. Furthermore, few studies report PPI processes and impact, particularly in doctoral research studies, which are seldom reported in peer‐reviewed papers. The aim of this paper was to explore the impact of PPI on two health‐related doctoral research studies and identify how PPI could be used meaningfully at this level. Method: The PPI processes included (a) involvement of two 'Research Buddies' who informed the research design and ensured implementation of a booklet intervention was feasible for family carers, (b) data analysis workshops with 'Research Buddies' to identify emerging themes from practitioner interviews, (c) public and stakeholder involvement who informed data collection tool design, and the design of an intervention to help people with obesity who attend weight loss groups. Findings: The application of PPI enhanced both doctoral studies by assisting data analysis; problem solving and improving recruitment rates; improving the usability and appeal of data collection tools and interventions; and developing implementation strategies. Patient and public involvement was considered a rewarding experience for both researchers and PPI contributors. Conclusion: This paper demonstrates the value of PPI in doctoral research in relation to its impact on research processes, researchers and contributors. We also present recommendations on how PPI could be incorporated into future doctoral research, including resources required, planning PPI processes and involving PPI contributors in all stages of research. [ABSTRACT FROM AUTHOR]

Aim: The study describes the fidelity of implementing a competency‐based nursing education (CBNE) programme during the COVID‐19 pandemic in a low‐resource setting. Design: A descriptive case study research design integrating mixed methods underpinned by the fidelity of implementation framework was applied to assess teaching, learning and assessment during the COVID‐19 pandemic. Methods: A survey, focus group and document analysis were applied to collect data from 16 educators, 128 students and eight administrators of a nursing education institution and accessing institutional documents. Data were analysed through descriptive statistics and deductive content analysis and packaging the outcome of the study according to the five elements related to the fidelity of implementation framework. Results: The fidelity of implementing the CBNE programme was satisfactorily maintained as described in the fidelity of implementation framework. However, sequenced progression and programmatic assessments were not aligned with a CBNE programme within the context of the COVID‐19 pandemic. Patient or Public Contribution: This paper proposes strategies to enhance the fidelity of implementing competency‐based education during educational disruptions. [ABSTRACT FROM AUTHOR]

Introduction: An admission to a mental health ward is an uncertain and unexpected part of a person's journey with dementia and consequently, families require information about what to expect and how to prepare. This study aimed to establish the information needs of people with dementia and their families at the point of admission to a mental health ward and to collate existing ward information leaflets to explore if they meet these information needs. Methods: This research was conducted in two parts: (1) a qualitative study using focus groups, one with people with dementia and family carers with lived experience of such an admission (n = 6), and another with Admiral Nurses (n = 6) to explore information needs at the point of admission. (2) Each National Health Service (NHS) mental health trust (n = 67) was asked to provide a copy of their ward information shared at admission. A total of 30 leaflets were received from 15 NHS trusts; after removing duplicates, 22 were included. A content analysis was conducted to evaluate to what extent leaflets met the information needs identified by focus groups. Results: Two main categories 'honest, accurate and up‐to‐date information' and 'who is the information for' and four subcategories were derived from focus group data. Participants felt that people with dementia and their families were likely to have different information needs. Material for people with dementia needed to be in an accessible format. Information should cover the aim of the admission, a timeline of what to expect and details about how families will be involved in care. Practical information about what to pack and ward facilities was valued. Participants spoke about the need to consider the tone of the information, given that people are likely to be distressed. The information leaflets reviewed did not meet the information needs identified by focus group participants. Conclusions: People with dementia and family carers have different information needs at the point of admission to a mental health ward. Information provided to people with dementia needs to be in an accessible format with content relevant to these needs. Wards should aim to co‐create information to ensure that they meet people's information needs. Patient or Public Contribution: This research was supported by a patient and public involvement (PPI) group of people with dementia and carers who have experience in mental health wards. The idea for the study came from the group and was motivated by their experiences. The PPI group helped with the design of the study and took part in the focus groups. The information generated has been written up in this paper, and the knowledge generated has also been used to co‐create a guide for wards on writing their information leaflets and to support the co‐creation of a public information leaflet by Dementia UK about mental health admissions for people with dementia. [ABSTRACT FROM AUTHOR]

Introduction: Chronic pain is a common, multifactorial condition and pharmacological treatments have limited benefits. Mindfulness is a holistic approach that might be of value in the management of chronic pain. However, attrition rates from mindfulness‐based interventions are high and factors affecting engagement are unknown. The aim of this study was to inform the design of a mindfulness programme that would be accessible and acceptable for people with chronic pain. Methods: Interpretative phenomenological analysis of interview data from people with chronic pain who had taken part in an 8‐week mindfulness programme based on mindfulness‐based stress reduction revealed factors affecting engagement with and suggestions for tailoring the programme. Factors were grouped into physical, psychological and social domains. Further suggestions for tailoring the programme to address these factors were generated through a nominal group of healthcare professionals and a focus group with service users who had chronic pain. Findings: Physical factors included disability and discomfort with some practices; psychological factors included expectations of the mindfulness programme and understanding the relationship between mindfulness and pain; and social factors included loneliness and support from others. The proposed modifications to the mindfulness programme supported by healthcare professionals and/or service users to address these are described in this paper. Public Contribution: This study involved public contributions at a number of stages. The University of Aberdeen Division of Applied Health Sciences Service User Group (who were members of the public with chronic pain) was involved in the design of the study. Patients with chronic pain recruited from general medical practice who took part in the mindfulness programme were interviewed on their experience of the programme. Patients with chronic pain who attended the mindfulness programme, and healthcare professionals with expertise in chronic pain and/or mindfulness, attended meetings to design a tailored mindfulness programme for people with chronic pain. [ABSTRACT FROM AUTHOR]

Introduction: Patient‐centred care (PCC) has come to the forefront for many institutions, funding agencies and clinicians, and is integrated into care. Does a disconnect in understanding still exist between patients, healthcare organizations and clinicians in what PCC means and how outstanding issues might be addressed? Methods: We conducted interviews and focus groups with self‐reported chronic care patients and clinicians providing care to these patients exploring PCC experiences, expectations and practices. These data were initially analysed using inductive thematic analysis. This paper reports on the findings of a secondary analysis examining the alignment between patients and clinicians on five key predetermined dimensions of PCC. Results: Eighteen patients participated, representing a range of chronic conditions. Thirty‐eight clinicians participated. One thousand and three hundred patient and 1800 clinician codes were identified and grouped into 5 main topics with 140 unique themes (patients) and 9 main topics with 54 unique themes (clinicians). A total of 166 quotes (patient = 93, clinician = 73) were identified for this PCC definition alignment analysis. Partial or complete alignment of patient and clinician perspectives was seen on most dimensions. Key disconnects were observed in patient involvement, patient empowerment and clinician–patient communication. Only 18% of patients reported experiencing patient‐centred communication, whereas 57% of clinicians reported using patient‐focused communication approaches. Conclusion: Overall, study patients and clinicians endorse that many PCC elements occur. This study highlights key differences between patients and clinicians, suggesting persistent challenges. Clinician participants relayed their PCC approaches of informing and educating patients; however, patients often perceive these approaches as didactic, role‐diminishing and noncollaborative. Collaborative approaches, such as shared decision‐making, hold promise to bridge persistent PCC gaps and should be integrated into medical education programmes. Patient or Public Contribution: This project was conceived and executed with a co‐design approach wherein patients with chronic conditions who are trained in research (i.e., see descriptions of Patient and Community Engagement Research in the text) were involved in all stages of the research project alongside other researchers on the project team. Healthcare providers were involved as participants and as principal investigators in the project. [ABSTRACT FROM AUTHOR]

Aim: To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP. Method: We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers. Results: In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I–IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III–V) participated. We identified 132 unique second‐level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services. Interpretation: Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. What this paper addsIncluding the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP).Adults with CP perceive environmental factors as essential elements for everyday functioning.Adults with intellectual disability should be considered as a group with specific problems. What this paper adds: Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP).Adults with CP perceive environmental factors as essential elements for everyday functioning.Adults with intellectual disability should be considered as a group with specific problems. This article is commented on by Escorpizo on page 766 of this issue. [ABSTRACT FROM AUTHOR]

Objective: To explore how Accountable Communities of/for Health (ACHs), a type of health‐focused multisector collaborative, are developing strategies to address health equity with diverse partners. Data Sources and Study Setting: Interview and focus group participants were recruited from a purposive sample of 22 ACH participant organizations in Washington (n = 9 ACHs) and California (n = 13 ACH). Study Design: Interview and focus group data were thematized using constant comparison analysis. Data Collection: Interviews were conducted to learn how each ACH's system context, collaboration processes, and goals influence its progress toward health equity. Focus groups were conducted to gain a deeper understanding of how local context and power dynamics influence an ACH's ability to make progress toward health equity. There were 22 focus group participants and 65 interview participants. Principal Findings: Results indicate that ACHs advance health equity across the social‐ecological spectrum of health with approaches targeting the individual, community, and societal levels. Specific approaches used by ACHs to collaboratively address health equity include providing equity education to participating organizations and community groups; including diverse community voices in collaborative decision‐making; changing practices in their participant's daily operations; improving existing services and developing new services; and actively promoting a culture of keeping equity at the center of ACH efforts. Conclusions: This study identifies strategies for advancing health equity in multisector collaboratives. ACHs in Washington and California are devoting resources to ensure health equity is central to their work. The numerous approaches ACHs use to advance health equity are important to ensure everyone can reach their full health potential. While current literature argues that multisector health initiatives are integral for advancing health equity, there is a lack of research on how these initiatives advance equity in practice. Thus, this paper provides generalizable strategies that can be further investigated to optimize progress toward health equity. [ABSTRACT FROM AUTHOR]

Background: As digital tools are increasingly used to support COVID‐19 contact tracing, the equity implications must be considered. As part of a study to understand the public's views of digital contact tracing tools developed for the national 'Test and Protect' programme in Scotland, we aimed to explore the views of groups often excluded from such discussions. This paper reports on their views about the potential for contact tracing to exacerbate inequalities. Methods: A qualitative study was carried out; interviews were conducted with key informants from organizations supporting people in marginalized situations, followed by interviews and focus groups with people recruited from these groups. Participants included, or represented, minority ethnic groups, asylum seekers and refugees and those experiencing multiple disadvantage including severe and enduring poverty. Results: A total of 42 people participated: 13 key informants and 29 members of the public. While public participants were supportive of contact tracing, key informants raised concerns. Both sets of participants spoke about how contact tracing, and its associated digital tools, might increase inequalities. Barriers included finances (inability to afford smartphones or the data to ensure access to the internet); language (digital tools were available only in English and required a degree of literacy, even for English speakers); and trust (many marginalized groups distrusted statutory organizations and there were concerns that data may be passed to other organizations). One strength was that NHS Scotland, the data guardian, is seen as a generally trustworthy organization. Poverty was recognized as a barrier to people's ability to self‐isolate. Some participants were concerned about giving contact details of individuals who might struggle to self‐isolate for financial reasons. Conclusions: The impact of contact tracing and associated digital tools on marginalized populations needs careful monitoring. This should include the contact tracing process and the ability of people to self‐isolate. Regular clear messaging from trusted groups and community members could help maintain trust and participation in the programme. Patient and Public Contribution: Our patient and public involvement coapplicant, L. L., was involved in all aspects of the study including coauthorship. Interim results were presented to our local Public and Patient Involvement and Engagement Group, who commented on interpretation and made suggestions about further recruitment. [ABSTRACT FROM AUTHOR]

Background: In the management of epidemics, like COVID‐19, trade‐offs have to be made between reducing mortality and morbidity and minimizing socioeconomic and political consequences. Traditionally, epidemic management (EM) has been guided and executed attentively by experts and policymakers. It can, however, still be controversial in the public sphere. In the last decades, public engagement (PE) has been successfully applied in various aspects of healthcare. This leads to the question if PE could be implemented in EM decision‐making. Methods: From June to October 2020, seven deliberative discussion focus groups were executed with 35 Dutch citizens between 19 and 84 years old. Their views on PE in COVID‐19 management were explored. The deliberative approach allows for the education of participants on the topic before the discussion. The benefits, barriers, timing and possible forms of PE in EM were discussed. Results: Almost all participants supported PE in EM, as they thought that integrating their experiences and ideas would benefit the quality of EM, and increase awareness and acceptance of measures. A fitting mode for PE was consultation, as it was deemed important to provide the public with possibilities to share ideas and feedback; however, final authority remained with experts. The publics could particularly provide input about communication campaigns and control measures. PE could be executed after the first acute phase of the epidemic and during evaluations. Conclusions: This paper describes the construction of an empirically informed framework about the values and conditions for PE in EM from the perspective of the public. Participants expressed support to engage certain population groups and considered it valuable for the quality and effectiveness of EM; however, they expressed doubts about the feasibility of PE and the capabilities of citizens. In future studies, these results should be confirmed by a broader audience. Patient or Public Contribution: No patients or members of the public were involved in the construction and execution of this study. This study was very exploratory, to gain a first insight into the views of the public in the Netherlands, and will be used to develop engagement practices accordingly. At this stage, the involvement of the public was not yet appropriate. [ABSTRACT FROM AUTHOR]

Background: Shared decision‐making has been shown to improve the quality of life in metastatic breast cancer patients in high‐literacy and high‐resource settings. However, limited studies have examined the cultural preferences of metastatic breast cancer patients with shared decision‐making implementation and the barriers encountered in an Asian setting where societal norms predominate and physician decision‐making is at the forefront. This paper aims to identify (1) barriers to practising shared decision‐making faced by healthcare professionals and patients and (2) strategies for implementing shared decision‐making in the context of metastatic breast cancer management in Malaysia. Methods: We conducted a qualitative study involving 12 patients diagnosed with metastatic breast cancer, 16 healthcare professionals and 5 policymakers from surgical and oncology departments at public healthcare centres in Malaysia. Semi‐structured in‐depth interviews and focus group discussions were conducted. The interviews were recorded, transcribed verbatim and analysed using the thematic approach. Nvivo software was used to manage and analyse the data. Results: Five main themes emerged from the study: healthcare provider–patient communication, workforce availability, cultural and belief systems, goals of care and paternalism versus autonomy. Other strategies proposed to overcome barriers to implementing shared decision‐making were training of healthcare professionals and empowering nurses to manage patients' psychosocial issues. Conclusion: This study found that practising shared decision‐making in the public health sector remains challenging when managing patients with metastatic breast cancer. The utilization of decision‐making tools, patient empowerment and healthcare provider training may help address the system and healthcare provider–patient barriers identified in this study. Patient or Public Contribution: Patients were involved in the study design, recruitment and analysis. [ABSTRACT FROM AUTHOR]

Background and Aims: The Internet of Things (IoTs) is a set of connected objects and devices that share data and pursue a common goal in different areas. IoT technology can significantly help the healthcare system by enabling the monitoring of elderly and chronic disease patients. Along with the growth of this technology, its challenges and limitations such as Connectivity, Compatibility, Standards, cost, legal, and ethical also increase. One of the most critical and challenging issues in the IoT is ethical issues. This study aims to explore the key ethical aspects of the IoT and Categorize them based on the executive phases of IoT in healthcare. Methods: The current study was conducted in two phases using the mixed‐method approach. In the first phase, a systematic review was conducted in relevant databases to identify ethical issues of the IoT. In the second phase, a focus group discussion was conducted to classify the extracted data elements based on executive phases of IoT by medical informatics experts and computer engineerings. Results: Among the 138 papers retrieved through the search strategy, 11 articles were selected, and 12 ethical issues related to IoT were identified. The obtained results revealed the importance of ethical issues of IoT, including security, confidentiality, privacy, anonymity, freedom to withdraw, informed consent, integrity, availability, authorization, access control, censoring, and eavesdropping. They were classified into five main categories of executive phases of IoT based on the five experts' opinions affiliated with SUMS, including data collection, data storage, data process, data transmission, and data delivery. Conclusion: Because of the key role of the IoT in disease prevention, real‐time tele‐monitoring of patient's functions, testing of treatments, health management, and health research, considering the risks relating to Health care and patient data is essential. Moreover, health policymakers should be aware of the ethical commitment to using IoT technology. [ABSTRACT FROM AUTHOR]

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

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

Background: In the Netherlands, all women aged 30–60 years are invited to participate in the national cervical cancer screening programme, which is aimed at early detection and treatment of precancerous lesions. One fourth of the Dutch population has a migration background, with Turkish and Moroccan immigrants being the largest immigrant populations. Turkish‐ and Moroccan‐Dutch women show lower screening participation rates and a higher incidence of cervical cancer, compared to native Dutch women. Since current information materials are not tailored to these women's needs, we developed a short culturally sensitive educational video to facilitate informed decision‐making for cervical cancer screening among Turkish‐ and Moroccan‐Dutch women. This article describes the development process of this video and the lessons learned. Methods: Using the Entertainment–Education communication strategy, we collaborated with an interdisciplinary team of Turkish‐ and Moroccan‐Dutch women, researchers, public health experts, and creative media professionals. We developed the video following the different stages of the Media Mapping model: Orientation, Crystallization, Design/Production, Implementation, and Dissemination. Each stage is described in the paper. Results: The video was developed in Moroccan‐Arabic, ‐Berber and Turkish, and emphasized three main themes: (1) more certainty about having cervical (pre)cancer and the possibility to prevent treatment, surgery, or premature death, and because of this, being there for the children, (2) according to the Islam, a woman should take good care of her health, and (3) anxiety, shame, and privacy. Conclusions: A short culturally sensitive educational video, delivered as part of a larger intervention together with the current information brochure, was developed based on theory and grounded in the needs of Turkish‐ and Moroccan‐Dutch women. The value and effectiveness of this intervention to facilitate informed cervical cancer screening decisions are evaluated in a randomised controlled trial. Patient or Public Contribution: We collaborated with Turkish‐ and Moroccan‐Dutch women during the development process of a short culturally sensitive educational video. Turkish‐ and Moroccan‐Dutch women were also invited to watch the raw footage to verify whether the content and presentation matched their needs and requirements. [ABSTRACT FROM AUTHOR]

Background: Communicating about medications across transitions of care is important in older patients who frequently move between health care settings. While there is increasing interest in understanding patient communication across transitions of care, little is known about older patients' involvement in formal and informal modes of communication regarding managing medications. Objective: The aim of this paper was to explore how older patients participated in managing their medications across transitions of care through formal and informal modes of communication. Methods: The study was conducted across two metropolitan hospitals: an acute hospital and a geriatric rehabilitation hospital in metropolitan Melbourne, Australia. A focused ethnographic design was used involving semi‐structured interviews (n = 50), observations (203 h) and individual interviews or focus groups (n = 25). Following thematic analysis, data were analysed using Fairclough's Critical Discourse Analysis. Results: Data analysis revealed two major discursive practices, which comprised of an interplay between formal and informal communication and environmental influences on formal and informal communication. Self‐created patient notes were used by older patients to initiate informal discussion with health professionals about medication decisions, which challenged traditional unequal power relations between health professionals and patients. Formal prompts on electronic medication administration records facilitated the continuous information discourse about patients' medications across transitions of care and encouraged health professionals to seek out older patients' preferences through informal bedside interactions. Environmental influences on communication comprised health professionals' physical movements across private and public spaces in the ward, their distance from older patients at the bedside and utilization of the computer systems during patient encounters. Conclusion: Older patients' self‐created medication notes enabled them to take on a more active role in formal and informal medication communication across transitions of care. Older patients and family members did not have continuous access to information about medication changes during their hospital stay and systems often failed to address older patients' key concerns about their medications, which hindered their active involvement in formal and informal communication. Patient or Public Contribution: Older adults, family members and health professionals volunteered to be interviewed and observed. [ABSTRACT FROM AUTHOR]

Introduction: British South Asians have a higher prevalence of overweight and obesity than the wider population. Bradford (UK), with its high Pakistani presence and levels of economic deprivation, has exceptionally high instances, especially in deprived areas where many Pakistanis reside. British Pakistani women in Bradford are more likely to be overweight and obese. There is uncertainty on how these women can be aided to manage their weight. Therefore, the objective of this study was to explore the obesity concerns of Pakistani women living in deprived inner‐city areas of Bradford. Methods: Three focus groups interviews were carried out with 23 Pakistani women living in deprived areas of Bradford. Data were analysed thematically. Results: This exploratory study identified a wide range of concerns that women had around managing their weight. Participants disclosed distrust in information given around medication, conflicting dietary information and reported low levels of trust in women‐only organized physical activities. Cultural barriers were identified, which included the gender role of the woman, the lack of culturally appropriate dietary advice, cultural misunderstandings of what constitutes a healthy diet and healthy weight, the lack of culturally suitable exercise facilities and conforming to family and community expectations. Other concerns were language barriers around a lack of understanding, the inability to read Urdu and reliance on others to translate information. Conclusion: These findings have implications for researchers, local authorities, policy makers and others with an interest in reducing the rates of obesity in this population. Recommendations include training health practitioners to be culturally aware of the diet and eating practices of this community, exploring different ways to support socially isolated women to be more physically active at home, addressing physical activity and diet misconceptions and designing obesity management information materials appropriate for a range of literacy levels. Patient or Public Contribution: Public contributors were involved in the development of the interview guide and design of the research. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Interview transcripts were member checked by participants, and participants assisted with data analysis. [ABSTRACT FROM AUTHOR]

Introduction: No one can argue on the importance of health in one's life. However, the value of health in the context of other priorities for individuals is not always as clear. Further, patients' experience with the healthcare system is rarely contrasted with the service providers' expectations. The aim of this paper is to examine and compare patients' and providers' own definitions of health and their perceptions of the healthcare delivery experience from the lens of residents and providers in West Baltimore, Maryland. Methods: This was a qualitative study with semi‐structured focus groups (15 sessions) and individual in‐depth interviews (21 interviews) with 94 participants. Two independent coders thematically analysed the transcripts. Results: Patients identified five areas where health systems can help them stay healthy or become healthier: affordability and costs of care; accessibility; clinician/patient communication; addressing social determinants; and stigma and trust. Providers acknowledged that the healthcare experience is not always perfect. While the medical team focuses on conversations that enhance medical care, patients are expecting providers to touch on subjects beyond medical care. Conclusions: Patients and providers need to consider that although they have a common value towards health, there is still a gap in what users expect and what providers can offer. To further align those expectations, there is a need for increasing involvement of patient in care administration and improving dialogue between the parties about these differences. Patient or Public Contribution: A Stakeholder Advisory Board (SAB)—comprised of a patient, two community leaders, a physician and two healthcare administrators—was instrumental in codeveloping the study material (e.g., interview guides), engaging patients in the research process, identifying participants and codeveloping dissemination material. Two SAB members—Gail Graham, a patient consultant/professor, and Marcia Cort, a physician—are coauthors. [ABSTRACT FROM AUTHOR]

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

Background: Engaging with the public is a key element of health research; however, little work has examined experiences of public involvement in research dissemination. The aim of this paper was to assess the extent of public involvement, experiences of public advisers and resulting changes in the dissemination of the North West Coast Household Health Survey (HHS). Methods: Three writing groups allowed public advisers to contribute to the dissemination of the HHS. A public workshop was set up to aid the co‐production of the research evidence and discuss the experiences of public advisers involved with the survey in March 2018. A focus group with public advisers was conducted in August 2018 to understand their experiences of involvement. Data were analysed using thematic analysis and coded by two researchers. Writing groups are still on‐going. Results: Fourteen public advisers contributed via three face‐to‐face writing groups, by actively interpreting findings and helping in the write‐up of research articles and by presenting talks at the public workshop. At the workshop, seven public advisors contributed to setting priorities for data analysis from the HHS. Five public advisers took part in the focus group, which highlighted that whilst public advisers were generally satisfied with their involvement, they would like to be involved in more activities. Conclusions: Members of the public shaped the dissemination of evidence and provided guidance for future steps. Public advisers were mostly positive about their involvement in the dissemination of the HHS, but highlighted the need for more transparency and support from researchers. [ABSTRACT FROM AUTHOR]

Background: To guide the development of high‐quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. Aim: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. Participants and methods: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. Results: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self‐management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). Conclusion: The JA‐CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person‐centred integrated care for people with multiple chronic conditions in the Netherlands. Patient contribution: European patient experts contributed to the development and applicability assessment of the JA‐CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey. [ABSTRACT FROM AUTHOR]

Emotions such as guilt and blame are frequently reported by non-breastfeeding mothers, and fear and humiliation are experienced by breastfeeding mothers when feeding in a public context. In this paper, we present new insights into how shame-related affects, cognitions and actions are evident within breastfeeding and nonbreastfeeding women's narratives of their experiences.As part of an evaluation study of the implementation of the UNICEF UK Baby Friendly Initiative CommunityAward within two primary (community based) care trusts in North West England, 63 women with varied infant feeding experiences took part in either a focus group or an individual semi-structured interview to explore their experiences, opinions and perceptions of infant feeding. Using a framework analysis approach and drawing on Lazare's categories of shame, we consider how the nature of the event (infant feeding) and the vulnerability of the individual (mother) interact in the social context to create shame responses in some breastfeeding and non-breastfeeding mothers.Three key themes illustrate how shame is experienced and internalised through 'exposure of women's bodies and infant feeding methods', 'undermining and insufficient support' and 'perceptions of inadequate mothering'. The findings of this paper highlight how breastfeeding and non-breastfeeding women may experience judgement and condemnation in interactions with health professionals as well as within community contexts, leading to feelings of failure, inadequacy and isolation. There is a need for strategies and support that address personal, cultural, ideological and structural constraints of infant feeding. [ABSTRACT FROM AUTHOR]

Industrialization and urbanization processes have challenged deeply held traditional gender norms and facilitated the emergence of modern ideologies in South Africa. This paper seeks to explore the gendered roles of family members on maternal and child nutrition and investigate indications of perceived change in related practices. A qualitative secondary analysis was conducted of data from nine focus group discussions (FGDs) held with men (n = 3) and women (n = 6) aged ≥18. Data from the FGD were coded and thematic analysis conducted. We found that elderly women seem to have a central advisory role with respect to maternal and child nutrition and that men and elderly women upheld patriarchal gender divisions of labour, which entrust mothers with the primarily responsibility for young children's nutrition. Young mothers relied on elderly women for provision of childcare and nutritious foods for children; however, they demonstrated some resistance to traditionally feminized forms of food preparation. We found that men's involvement in children's nutrition was limited, though they expressed a preference to be more involved in maternal and child nutrition and care practices. A gender transformative approach to policy development, which includes elderly women and men, has the potential to promote more gender‐equitable nutrition practices, increase young women's self‐efficacy and support them to overcome barriers that could be limiting their decision making power in achieving optimal nutrition for themselves and their children. [ABSTRACT FROM AUTHOR]

Complementary feeding practices and adherence to health recommendations are influenced by a range of different and often interrelating factors such as socio‐economic and cultural factors. However, the factors underlying these associations are often complex with less awareness of how complementary feeding approaches vary across the UK's diverse population. This paper describes a qualitative investigation undertaken in a deprived and culturally diverse community in the UK which aimed to explore parents' knowledge, beliefs and practices of complementary feeding. One hundred and ten mothers and fathers, self‐identified as being White British, Pakistani, Bangladeshi, Black African/Caribbean or Polish took part in twenty‐four focus group discussions, organised by age group, sex and ethnicity. The findings revealed that most parents initiated complementary feeding before the World Health Organisation (WHO) recommendation of 6 months. Early initiation was strongly influenced by breast feeding practices alongside the extent to which parents believed that their usual milk; that is, breastmilk or formula was fulfilling their infants' nutritional needs. The composition of diet and parents' approach to complementary feeding was closely aligned to traditional cultural practices; however, some contradictions were noted. The findings also acknowledge the pertinent role of the father in influencing the dietary practices of the wider household. Learning about both the common and unique cultural feeding attitudes and practices held by parents may help us to tailor healthy complementary feeding advice in the context of increasing diversity in the United Kingdom. [ABSTRACT FROM AUTHOR]

Stakeholders might have diverging or conflicting expectations about the functions that peer review should fulfil. We aimed to explore how stakeholder groups perceive peer review and what they expect from it. We conducted qualitative focus group workshops with early‐, mid‐, and senior career scholars, editors, and publishers. We recruited participants following a purposive maximum variation sampling approach. To identify purposes of peer review, we conducted a thematic analysis. Stakeholders expected peer review (1) to assess the contributions of a manuscript, (2) to conduct quality control, (3) to improve manuscripts, (4) to assess the suitability of manuscripts for a journal, (5) to provide a decision‐making tool for editors, (6) to provide feedback by peers, (7) to curate a community, and (8) to provide a seal of accreditation for published articles. Stakeholders with different roles and tasks in the peer review process differed in the value they attached to the functions of peer review. Early‐ and mid‐career researchers valued social and feedback functions of peer review, while senior career researchers and editors expected it to instead perform a technical assessment of manuscripts and serve as a decision‐making tool. Publishers expected peer review to assess the suitability of manuscripts for their journals and to provide a seal of accreditation. This revealed a potential tension between functions of peer review. Stakeholder expectations are shaped by how stakeholders perceive their own roles both in relation to the peer review process and within their scientific community. [ABSTRACT FROM AUTHOR]

Background: During the 2020 COVID‐19 pandemic, one of the key components of many countries' strategies to reduce the spread of the virus is contact tracing. Objective: To explore public attitudes to a COVID‐19 contact tracing app in the United Kingdom. Setting: Online video‐conferencing. Participants: 27 participants, UK residents aged 18 years and older. Methods: Qualitative study consisting of six focus groups carried out between 1st‐12th May, 2020 (39‐50 days into the UK 'lockdown'). Results: Participants were divided as to whether or not they felt they would use the app. Analysis revealed five themes: (1) lack of information and misconceptions surrounding COVID‐19 contact tracing apps; (2) concerns over privacy; (3) concerns over stigma; (4)concerns over uptake; and (5) contact tracing as the 'greater good'. Concerns over privacy, uptake and stigma were particularly significant amongst those stated they will not be using the app, and the view that the app is for the 'greater good' was particularly significant amongst those who stated they will be using the app. One of the most common misconceptions about the app was that it could allow users to specifically identify and map COVID‐19 cases amongst their contacts and in their vicinity. Conclusions: Our participants were torn over whether digital contact tracing is a good idea or not, and views were heavily influenced by moral reasoning. Patient or Public Contribution: No patients were involved in this study. The public were not involved in the development of the research questions, research design or outcome measures. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Summary results were disseminated via email to participants prior to publication for feedback and comment. [ABSTRACT FROM AUTHOR]

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

Background: Patient‐reported Experience (PRE) is an emerging concept integrating patient perspectives and amplifying voices often marginalized in discussions surrounding health systems. However, it remains a challenge to use and integrate PREs when studying patient agency and access to quality services, particularly with data from multiple sources. In this article, using study materials from the Swiss MIWOCA project, we present and reflect upon a multistage PRE approach to study healthcare access. Methods: The MIWOCA project, a study on healthcare access and quality among immigrant women with chronic illnesses living in Switzerland, provided data from multiple sources for the integration of PRE data. These sources included interviews with women (n = 48), two focus group discussions with women (n = 15), interviews with service providers (n = 12) and observations from stakeholder dialogues (n = 3). In addition, we utilized field notes, focus group illustration maps, patient vignettes and policy briefs to develop a multistage data linking model. PRE data served as starting themes and reference topics in each of the interlinked stages of knowledge production. Results: Deploying PREs, we coherently linked the data from preceding stages and used them to inform subsequent stages. This, in turn, enabled us to identify, reflect and rectify factors limiting immigrant women's agency and access to quality services. Ultimately, the approach engaged patients as knowledge co‐producers for system‐level changes. This knowledge was transformed into a set of practice recommendations and a policy brief addressing ways to improve health systems to better serve immigrant women in Switzerland. Conclusions: Building on PREs to systematically combine multiple data sources and engage patients continuously can improve our understanding of barriers in health systems. Beyond individual patient‐doctor encounters, a multistage PRE approach can identify structural problems and provide clues for resolving them at the systems level. The PREs approach presented may serve as an example and encourage more public health experts to consider PREs in future research and practice. Patient and Public Contribution: Women with chronic illness and immigration experience contributed to interview‐guideline development, provided PREs in interviews, identified priority areas for health‐service change and actively participated in the development of practice recommendations. [ABSTRACT FROM AUTHOR]

This paper aims to provide new evidence on the role played by the local contexts in the implementation of Cohesion Policy, by means of a comparative analysis of the experiences of the Italian regions of Emilia‐Romagna and Calabria. Through a deep examination of the 2007–2013 programming period, focus groups with the Cohesion Policy practitioners complemented with document analysis, this work shows how political (in)stability, political entrepreneurship and administrative (in)capacity shaped the patterns of Cohesion Policy implementation in the two regions, thus supporting the idea that institutional arrangements of Cohesion Policy should better account for the diversity of local contexts. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to explore the perception of nursing students regarding their engagement in digital learning environments. Design: At one of universities in Saudi Arabia, a qualitative descriptive study design was used among nursing students from various academic levels. Methods: Data were collected using focus group discussions among a sample of 23 participants. Data were analysed using thematic analysis. The COREQ Standards for Reporting Qualitative Research were used to report this study. Results: While sharing their perceptions the nursing students reflected on the behavioural and cognitive aspects of engagement, yet they did not include emotional aspects of engagement in their conceptualization. However, the results showed that, while they reflected on their experiences they tended to reflect on emotional aspects of engagement. According to the study's results, self‐paced studying, reflective exercises, and interaction with audiovisual and dynamic content all encourage the activation of past knowledge in online learning. The learning modality also was found to be a safe and convenient approach among the participating students. Digital learning presents as a promising educational approach that extends beyond the pandemic yet, efforts should be put in place to facilitate the optimal student engagement to meet learning outcomes. Further research is needed to measure its impact on engagement and other pertinent indicators objectively. [ABSTRACT FROM AUTHOR]

Introduction: Support staff within social care settings have expressed a need for resources to facilitate end‐of‐life care planning with people with intellectual disabilities. This study aimed to co‐design a preliminary toolkit of end‐of‐life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. Methods: An adapted Experience‐Based Co‐Design process was applied to develop a toolkit for end‐of‐life care planning with people with intellectual disabilities. A co‐design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co‐facilitated the workshops), five family members, five intellectual disability support staff including two intellectual disability service managers, and five healthcare professionals. Results: The All Together Group tested resources for and approaches to end‐of‐life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy‐read end‐of‐life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation‐starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end‐of‐life care planning with people with intellectual disabilities. Conclusion: Through an iterative, flexible, inclusive, and comprehensive co‐design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end‐of‐life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. Patient or Public Contribution: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.‐B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co‐design group as well. Two of these representatives were also co‐applicants in the overall project (N.P. and S.S.). The co‐design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers. Practitioner Points: To facilitate proper and timely end‐of‐life care planning, resources and approaches should be developed together with people with intellectual disabilities and support staff to make sure they are relevant, accessible, and workable in social care practice.People with intellectual disabilities prefer visual and creative approaches to end‐of‐life care planning rather than easy‐read plans and forms.Co‐producing an end‐of‐life care planning toolkit is an iterative, time‐consuming, and complex process, which requires a flexible approach, adapting to the feedback from and needs of co‐design group members. [ABSTRACT FROM AUTHOR]

Objectives: Women in the criminal justice system and women who have been subject to domestic abuse are at high risk of cancer but underrepresented in health promotion research. We aimed to co‐produce, pilot and evaluate a health promoting programme delivered on group walks. Design: A programme co‐produced by women, based on motivational interviewing, created the opportunity for supportive conversations about cancer prevention. Methods: Programme development in two workshops with women with lived experience using authentic vignettes to prompt help‐seeking conversations. A small pilot and a qualitative evaluation was done using framework analysis. Results: The programme appeared acceptable to women and the walk leaders. Women felt included and found it a safe space for sensitive conversations. They appeared empowered and more confident to seek help. Walk leaders expressed confidence in delivering this informal programme, which used prompts rather than delivering didactic training. Conclusion: Cancer prevention for high‐risk groups can be delivered in a personalised and novel way by creating informal opportunities for supportive conversations about cancer prevention. Careful co‐production of the programme of walks with women, using scenarios and quotes that were authentic vignettes, ensured that these came directly from the women's lived experience and enabled women to talk about change. Our findings indicate that this approach was practical, relevant and acceptable to them with some evidence of women feeling empowered to make informed decisions about their health. We recommend that future cancer prevention programmes for underrepresented groups take an asset‐based approach by utilising pre‐existing community organisations to increase reach and sustainability. Patient and Public Involvement: Women with lived experience co‐designed and tested the programme. Provisional findings were fed back to the women and the women's organisation that partnered with this research. [ABSTRACT FROM AUTHOR]

Introduction: A growing body of research is examining how healthcare systems are responding to the increasing numbers of migrants and the resulting superdiversity of patients. The aim of this article is to identify and explain communication barriers in the provision of healthcare to Ukrainian war refugees in the Czech Republic from the perspectives of healthcare professionals and intercultural mediators. Methods: The exploratory case study is based on a qualitative analysis of semi‐structured interviews with frontline health professionals: 20 with doctors and 10 with nurses. The second source of data is two focus groups aimed at capturing communication problems from the perspective of intercultural mediators who accompany refugees to health facilities. The interview transcripts and FGs were analysed using six‐stage thematic coding. Results: The survey identified five main themes related to barriers to communication: (1) language barriers and interpreting, (2) cultural barriers, (3) differing expectations of health and the healthcare systems in the Czech Republic and Ukraine, (4) prejudices and negative attitudes and unethical behaviour towards refugees and migrants and (5) lack of awareness of patient rights. Conclusions: The arrival of large numbers of migrants has highlighted deficiencies in the system that may affect other vulnerable groups and the general population. These include the lack of general communication skills and legal awareness among many health professionals, which are barriers to the development of patient‐centred care. The involvement of intercultural mediators fundamentally improves communication between health professionals and (not only) migrant patients. Nevertheless, it is necessary to legally anchor and define the position of intercultural mediators within the healthcare system. Patient or Public Contribution: Collaboration with intercultural mediators who interpreted the extensive experiences of Ukrainian refugee patients and also have personal experience as migrant or migrant‐origin patients contributed to shaping research questions, facilitating study participation and enriching evidence interpretation. Researchers with multicultural backgrounds and experience with working with people from refugee backgrounds were involved in the study design and analysis. [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]