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Objective: The aim of this study was to explore parents' experiences of their relationships and interactions with healthcare professionals (HCPs) during care related to prenatal diagnosis and termination of pregnancy for foetal anomaly (TOPFA). Methods: A qualitative approach was used. Participants included 33 parents (23 women and 10 men) from Northern Ireland (n = 11) and Ireland (n = 22) who had a TOPFA. Data collection methods included semi‐structured interviews and written narrative accounts. Data were analysed using thematic analysis. Results: Findings confirmed that TOPFA was a traumatic, life‐altering experience for parents, impacting their health and well‐being. The actions, behaviours and words of HCPs impacted how parents perceived and interpreted their healthcare experiences and their access to services and supports. In relation to this, five themes are presented: (1) the importance of compassionate and non‐judgemental care, (2) the value of effective information and communication, (3) the desire for compassionate care for baby and facilitation of memory making, (4) the need for continuity of care and (5) parents' experiences of healthcare relationships during times of legislative change. Conclusion: This research reveals the important role HCPs play in helping parents cope with prenatal testing and TOPFA. Parents who had a positive relationship with an HCP, in which information was communicated effectively and compassionate and non‐judgmental care was provided, felt more supported and more able to accept and adapt to their loss. Patient and Public Contribution: An advisory group composed of parents who had experienced TOPFA and HCPs with experience in caring for such families were involved in the study from the outset, contributing to the design and development of data collection materials, interpretation of the findings and design of dissemination materials. [ABSTRACT FROM AUTHOR]

Introduction: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co‐design Forward with Dementia—Social Care, a resource and information website supporting people receiving a dementia diagnosis. Methods: The PPIE partnership was set up in four stages: 1–identifying communities that have been under‐represented from PPIE in dementia research; 2—recruiting PPIE partners from these communities; 3—supporting PPIE partners to become confident to undertake their research roles and 4—undertaking research co‐design activities in an equitable fashion. Results: To address under‐representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. Conclusion: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co‐design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co‐design of research outputs that reflect the diversity and complexity of UK contemporary society. Patient or Public Contribution: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co‐authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co‐authors. [ABSTRACT FROM AUTHOR]

Background: UNderstanding Factors that explain Avoidable hospital admission Inequalities—Research study (UNFAIR) addresses how to reduce health inequalities, particularly for avoidable hospital admissions. Our Patient and Public Involvement and Engagement (PPIE) members broached that health inequalities are complex, challenging to understand and communicate. They identified a need to explore diverse views, including people who have a higher risk of health inequalities. With limited public‐facing resources relating to the public's understanding or emotions around health inequalities, this project aimed to fill this gap using co‐leadership and co‐production. Methods: Members of the public worked with researchers to co‐produce and run PPIE workshops. This project was co‐led by a member of the public and a researcher. One online workshop open to anyone in England accompanied by three face‐to‐face workshops were held. Public contributors, including people living in diverse communities, were invited. Inclusive involvement opportunities were offered including flexible ways of involvement and remuneration. To strengthen the key messages' rigour, transcriptions of the audio‐recordings from each workshop, with facilitator notes, were analysed using thematic analysis. From the key messages, an animation was co‐produced with public contributors with the public's voice being integral throughout. Key Messages: A total of 58 people took part capturing intersecting and multiple dimensions of marginalisation including people with a range of ages, genders, ethnicities, socioeconomic backgrounds, and members of communities who face exclusion (including people with learning difficulties and experiencing ill‐health). The animation highlighted powerful lived experience, for example, some people are dying earlier than expected. Health inequalities conjured up powerful emotions, such as anger and hopelessness. Public views of how to address health inequalities included respecting, accepting and valuing everyone, regardless of, for example, where people live. The animation is publicly available for use by anyone, including decision makers across the health and care system. Conclusions: Through co‐leadership and co‐production, this project is an example of inclusive PPIE. This project provided a way for the public's voice to influence policy and practice to inform understanding and action to address health inequalities. The animation provides powerful insights into what health inequalities mean to people with examples of lived experience and corroborates the moral argument for action by decision makers. Patient and Public Contribution: Members of the public, including people who were affected or at higher risk of health inequalities, co‐led this project and were involved as co‐creators and developers from the inception of the project to completion. Their involvement was integral and documented in full throughout the project. [ABSTRACT FROM AUTHOR]

Abstract Background Patient and public involvement and engagement (PPIE) is recognized as important for improved quality in health service provision and research. Vitamin D is one area where PPIE has potential to benefit public health initiatives, particularly for women and children with increased skin pigmentation (ie at high risk of deficiency) who are easily overlooked. Objective We report findings from a community PPIE event that explored the knowledge, barriers and promoters for optimal vitamin D status amongst an exemplar high‐risk and easily overlooked population group. Methods Two researchers and one PPIE lead facilitated a single group discussion with twenty members of the Somali community from across west London. All attendees were women of reproductive age, or knew a mother and child that could benefit from a targeted initiative. The discussion was recorded, transcribed verbatim, organized and coded using NVivo 12 Pro to identify emergent themes underpinned by the Health Behaviour Model. Results Attendees thought community safety and competing demands of technology and education impacted on sun exposure and lifestyle activity. Language barriers impacted on access to health care. Attendees also felt the mother figure was ‘the most important’ influencer of both child and wider community health. Discussion Although further discourse is needed, this event emphasizes that it is important that the public voice is heard in informing, designing and evaluating appropriate public health interventions amongst specific ethnic groups. Insights from this Somali population have suggested benefit from using verbal health messages that are specifically targeted at mothers, compared with the general population.

Background: Patient and public involvement and engagement (PPIE) is recognized as important for improved quality in health service provision and research. Vitamin D is one area where PPIE has potential to benefit public health initiatives, particularly for women and children with increased skin pigmentation (ie at high risk of deficiency) who are easily overlooked. Objective: We report findings from a community PPIE event that explored the knowledge, barriers and promoters for optimal vitamin D status amongst an exemplar high‐risk and easily overlooked population group. Methods: Two researchers and one PPIE lead facilitated a single group discussion with twenty members of the Somali community from across west London. All attendees were women of reproductive age, or knew a mother and child that could benefit from a targeted initiative. The discussion was recorded, transcribed verbatim, organized and coded using NVivo 12 Pro to identify emergent themes underpinned by the Health Behaviour Model. Results: Attendees thought community safety and competing demands of technology and education impacted on sun exposure and lifestyle activity. Language barriers impacted on access to health care. Attendees also felt the mother figure was 'the most important' influencer of both child and wider community health. Discussion: Although further discourse is needed, this event emphasizes that it is important that the public voice is heard in informing, designing and evaluating appropriate public health interventions amongst specific ethnic groups. Insights from this Somali population have suggested benefit from using verbal health messages that are specifically targeted at mothers, compared with the general population. [ABSTRACT FROM AUTHOR]