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Background and Aim: Long Covid is often stigmatised, particularly in people who are disadvantaged within society. This may prevent them from seeking help and could lead to widening health inequalities. This coproduced study with a Community Advisory Board (CAB) of people with Long Covid aimed to understand healthcare and wider barriers and stigma experienced by people with probable Long Covid., Methods: An active case finding approach was employed to find adults with probable, but not yet clinically diagnosed, Long Covid in two localities in London (Camden and Merton) and Derbyshire, England. Interviews explored the barriers to care and the stigma faced by participants and were analysed thematically. This study forms part of the STIMULATE-ICP Collaboration., Findings: Twenty-three interviews were completed. Participants reported limited awareness of what Long Covid is and the available pathways to management. There was considerable self-doubt among participants, sometimes reinforced by interactions with healthcare professionals (HCPs). Participants questioned their deservedness in seeking healthcare support for their symptoms. Hesitancy to engage with healthcare services was motivated by fear of needing more investigation and concerns regarding judgement about the ability to carry out caregiving responsibilities. It was also motivated by the complexity of the clinical presentation and fear of all symptoms being attributed to poor mental health. Participants also reported trying to avoid overburdening the health system. These difficulties were compounded by experiences of stigma and discrimination. The emerging themes reaffirmed a framework of epistemic injustice in relation to Long Covid, where creating, interpreting and conveying knowledge has varied credibility based on the teller's identity characteristics and/or the level of their interpretive resources., Conclusion: We have codeveloped recommendations based on the findings. These include early signposting to services, dedicating protected time to listening to people with Long Covid, providing a holistic approach in care pathways, and working to mitigate stigma. Regardless of the diagnosis, people experiencing new symptoms must be encouraged to seek timely medical help. Clear public health messaging is needed among communities already disadvantaged by epistemic injustice to raise awareness of Long Covid, and to share stories that encourage seeking care and to illustrate the adverse effects of stigma., Patient or Public Contribution: This study was coproduced with a CAB made up of 23 members including HCPs, people with lived experience of Long Covid and other stakeholders., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Long Covid is an emerging long-term condition, with those affected raising concerns about lack of healthcare support., Objective: We conducted a qualitative study to identify facilitators and barriers to healthcare access for people with Long Covid, aiming to enhance our understanding of the specific nature of these barriers and how patient experiences may vary., Setting and Participants: In the context of the Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE-ICP) Delphi study, a nationally distributed online survey was conducted. Eight patients and eight healthcare practitioners (HCP) were interviewed via telephone or video call. Framework analysis, sensitised by the candidacy theory, was used to identify barriers and facilitators over four levels of access to care., Results: Three themes were identified: (i) patients' efforts to navigate emerging pathways for Long Covid, (ii) the patient-HCP interaction and (iii) service resources and structural constraints. Barriers to specialist care included long waiting times, communication gaps across services and a lack of continuity in care. Facilitators included collaborative, patient-centred approaches, patients' active role in their healthcare and blended approaches for appointments. The perspectives of both patients and HCPs largely aligned., Discussion: The candidacy framework was valuable in understanding the experiences of people with Long Covid seeking access to healthcare. Individuals perceived themselves as eligible for care, but they often encountered obstacles in obtaining the expected level of care or, in some cases, did not receive it at all. Our findings are discussed in the context of the candidacy model through multiple processes of identification, negotiation, permeability and appearances at health services. These themes seem to be especially important for the emerging new pathway model and are relevant to both primary and secondary care., Conclusions: This study highlights that despite these interviews being conducted two years after the start of the COVID-19 pandemic, people with Long Covid still struggle to access healthcare, emphasising the ongoing need to provide equitable timely healthcare access for people with Long Covid., Patient or Public Contribution: People with Long Covid advised on all stages of this research., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Receiving and accessing care after a diagnosis of dementia, both for the person and their carer, are fraught with inequalities. The aim of this public engagement activity was to co-produce a board game about dementia inequalities to facilitate learning, dialogue and educate about different barriers, and facilitators, to diagnosis and care and to test the game's impact on dementia knowledge with the general public., Methods: Two virtual and two face-to-face workshops with people with dementia, unpaid carers, health and social care professionals and Third Sector representatives were held between October 2022 and June 2023. Virtual workshops involved discussions of inequalities and how a board game may feature inequalities. The first face-to-face workshop was split into the same activities, aided by outcomes from workshops 1 and 2. Workshop 4 attendees tested the prototype. The impact of the game on knowledge about dementia and inequalities was tested at a game play workshop in October 2023., Results: Forty stakeholders attended four workshops. Workshops provided step-by-step thoughts on how the game could be designed or modified. The final game, prototype tested in workshop 4, consists of a one-sided, two-half board depicting the prediagnosis process (left half) and postdiagnosis process (right half). Fifty-two members of the general public participated in the game play workshop, which led to significant improvements in knowledge about dementia (p < .001) and inequalities (p < .001)., Discussion: The game can be used to improve knowledge about dementia inequalities for health and social care professionals, carers, people living with dementia, decision makers and the general public., Patient or Public Contribution: This engagement activity fully involved people with dementia, unpaid carers, health and social care professionals and Third Sector representatives throughout, with two unpaid carers as public advisers on the team., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: We report on a study of a facilitated interactive group learning approach, through Collaborative Implementation Groups (CIGs), established to enhance capacity for equity-sensitive evaluation of healthcare services to inform local decision-making: (1) What was the experience of participants of the CIGs? (2) How was knowledge mobilisation achieved? (3) What are the key elements that enhance the process of coproducing equity-sensitive evaluations?, Methods: A thematic analysis of qualitative data obtained from focus group (FG) discussions and semistructured interviews exploring the experiences of participants. All FGs included representation of participants from different projects across the programme. Interviews were conducted with a member from each of the teams participating in the first cohort after their final workshop., Results: We identified four themes to illustrate how the approach to delivering intensive and facilitated training supported equity-sensitive evaluations of local healthcare services: (1) Creating the setting for coproduction and knowledge mobilisation; (2) establishing a common purpose, meaning and language for reducing health inequalities; (3) making connections and brokering relationships and (4) challenging and transforming the role of evaluation., Conclusion: We report on the implementation of a practical example of engaged scholarship, where teams of healthcare staff were supported with resources, interactive training and methodological advice to evaluate their own services, enabling organisations to assemble timely practical and relevant evidence that could feed directly into local decision-making. By encouraging mixed teams of practitioners, commissioners, patients, the public and researchers to work together to coproduce their evaluations, the programme also aimed to systematise health equity into service change. The findings of our study illustrate that the approach to delivering training gave participants the tools and confidence to address their organisation's stated aims of reducing health inequalities, coproduce evaluations of their local services and mobilise knowledge from a range of stakeholders., Patient or Public Contribution: The research question was developed collaboratively with researchers, partner organisations and public advisers (PAs). PAs were involved in meetings to agree on the focus of this research and to plan the analysis. N. T. is a PA and coauthor, contributing to the interpretation of findings and drafting of the paper., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Introduction: Covid-19 expanded the use of remote working to engage with public contributors in health and social care research. These changes have the potential to limit the ability to participate in patient and public involvement and engagement (PPIE) for some public contributors. It is therefore important to understand public contributors' preferences, so that remote working can be organized in an optimal way to encourage rather than discourage participation., Methods: We use an economic preference elicitation tool, a discrete choice experiment (DCE), via an online survey, to estimate public contributors' preferences for and trade-offs between different features of remote meetings. The features were informed by previous research to include aspects of remote meetings that were relevant to public contributors and amenable to change by PPIE organizers., Results: We found that public contributors are more likely to participate in a PPIE project involving remote meetings if they are given feedback about participation; allowed to switch their camera off during meetings and step away if/when needed; were under 2.5 h long; organized during working hours, and are chaired by a moderator who can ensure that everyone contributes. Different combinations of these features can cause estimated project participation to range from 23% to 94%. When planning PPIE and engaging public contributors, we suggest that resources are focused on training moderators and ensuring public contributors receive meeting feedback., Discussion and Conclusion: Project resources should be allocated to maximize project participation. We provide recommendations for those who work in public involvement and organize meetings on how resources, such as time and financial support, should be allocated. These are based on the preferences of existing public contributors who have been involved in health and social care research., Patient or Public Contribution: We had a public contributor (Naheed Tahir) as a funded coapplicant on the UKRI ESRC application and involved members of the North West Coast Applied Research Collaboration (NWC ARC) Public Advisor Forum at every stage of the project. The survey design was informed from three focus groups held with NWC ARC public contributors. The survey was further edited and improved based on the results of six one-to-one meetings with public contributors., (© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

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., (© 2019 The Authors Health Expectations Published by John Wiley & Sons Ltd.)

Background: Despite the availability of effective evidence-based treatments for depression and anxiety, many 'harder-to-reach' social and patient groups experience difficulties accessing treatment. We developed a complex intervention, the AMP (Improving Access to Mental Health in Primary Care) programme, which combined community engagement (CE), tailored (individual and group) psychosocial interventions and primary care involvement., Objectives: To develop and evaluate a model for community engagement component of the complex intervention. This paper focuses on the development of relationships between stakeholders, their engagement with the issue of access to mental health and with the programme through the CE model., Design: Our evaluation draws on process data, qualitative interviews and focus groups, brought together through framework analysis to evaluate the issues and challenges encountered., Setting & Participants: A case study of the South Asian community project carried out in Longsight in Greater Manchester, United Kingdom., Key Findings: Complex problems require multiple local stakeholders to work in concert. Assets based approaches implicitly make demands on scarce time and resources. Community development approaches have many benefits, but perceptions of open-ended investment are a barrier. The time-limited nature of a CE intervention provides an impetus to 'do it now', allowing stakeholders to negotiate their investment over time and accommodating their wider commitments. Both tangible outcomes and recognition of process benefits were vital in maintaining involvement., Conclusions: CE interventions can play a key role in improving accessibility and acceptability by engaging patients, the public and practitioners in research and in the local service ecology., (© 2014 John Wiley & Sons Ltd.)

Objective: The aim of this paper is to explore variations in lay perceptions of user involvement in clinical governance., Context: The English National Health Service has sought to build a dependable health service through enhanced effectiveness, responsiveness and consistency. Clinical governance, a policy for improving service quality, is a key pillar of these reforms. It is a statutory duty of primary care organizations to ensure that users are involved in all service planning and decision making, including clinical governance. Yet surveys indicated that user involvement in clinical governance was underdeveloped and underutilized., Design: Focus groups were conducted with different types of lay people to explore their perceptions around public involvement in different aspects of clinical governance policy., Results: Content analysis of the transcripts reveals that different groups of lay people varied in their desired role perspective and preferred type of involvement in different aspects of clinical governance policy. Drawing upon existing models of user involvement, we identified three role perspectives that lay people could take in user involvement - consumer, advocate and citizen. We compared our findings regarding the desired type of involvement with existing models of user involvement, and identified a new type of involvement, overseeing, that is relevant to clinical governance policy., Conclusions: These findings suggest that to facilitate user involvement in clinical governance, it would be necessary to use different strategies to accommodate the differing role perspectives and types of involvement desired by different groups of lay people.

Our objective was to establish nomograms for fetal eye measurements from 12 weeks' gestation by using transvaginal and transabdominal high-resolution ultrasound techniques. A prospective cross-sectional study was performed on 450 normal singleton pregnancies between 12 and 37 weeks' gestation. Vitreous and lens circumferences were measured by transvaginal ultrasonography until 17 weeks, and by abdominal ultrasound between 18 and 37 weeks' gestation. Regression analyses were used to create nomograms, and several transformations were done to obtain linearity. Eye measurements of 12 fetuses at risk for ocular disturbances were plotted on the constructed nomograms. Linear relationships were fitted between vitreous (r2 = 0.79) and lens (r2 = 0.88) circumferences and gestational age. In addition, there was a significant correlation between these measurements and the biparietal diameter. Data of the fetuses at risk showed that disturbances in ocular growth were associated mainly with abnormal cerebral development. These normative data may be helpful in the prenatal diagnosis of suspected congenital syndromes that include, among their manifestations, ocular growth disturbances such as microphthalmos and anophthalmos.