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

Aim: To describe the life situation of spouses having a partner with heart disease and adolescents living at home. Design: Qualitative inductive design. Method: Participants (n = 22) were included from three Scandinavian countries. Semi‐structured interviews were analysed using thematic analysis with an inductive and latent approach. Results: Three themes were derived. 'Being in spousal and parental role transition' described how daily life had been affected and parental responsibilities had been doubled due to their partner's heart disease. 'Living with unpredictability and insecurity' included how the unpredictable illness trajectory caused worries and affected the well‐being of the family. 'Managing a challenging life situation' highlights how spouses coped with their partners' heart disease and adapted to a new life situation. Conclusion: Young spouses' life situation was greatly affected by their partner's heart disease, resulting in increased responsibilities and double parenthood. Having a positive attitude and mindset towards life was used as a strategy to cope with the changed life situation and find a new way of life. Implications for the Profession and/or Patient Care: All family members are affected by heart disease. Spouses needed additional professional support and guidance on how to involve the children when a parent is ill. Impacts: This study highlights how young spouses, with adolescents living at home, experience their life situation.The life situation is unpredictable due to the partner's heart disease, as they must handle both caring for their partner and taking on double parenthood.Research involving family members can improve person‐ and family‐centred care and treatment outcomes in health care and society. Reporting Method: COREQ checklist was used preparing the manuscript. Patient or Public Contribution: Data collection included interviews with spouse. What Does This Paper Contribute to the Wider Global Clinical Community?: By highlighting the spouses changed life situation due to heart disease and the importance of including them in health care. [ABSTRACT FROM AUTHOR]

Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [ABSTRACT FROM AUTHOR]

Background: Medical interventions have a place in crisis support; however, narrow biomedical and risk‐driven responses negatively impact people seeking crisis care. With increasing shifts towards involving people with lived experience (service users) in designing services, foregrounding people's desired responses is critical. Accordingly, the aim of the study was to explore the wished‐for crisis responses from the perspective of people who have experienced crisis and accessed crisis care. Method: Using a hermeneutical phenomenological approach, in‐depth interviews were conducted to determine the desired crisis responses of 31 people who self‐reported experiencing mental health crises and accessed crisis services at ED, phone lines and/or crisis alternatives. Results: The findings identified wished‐for responses that gave a felt and embodied sense of their own safety influenced by a human‐to‐human response, emotional holding, a place of safety and choice within holistic care. For such responses to be possible, participants identified organising principles, including recognising crisis as meaningful and part of our shared human experience, understanding risk as fluid and a whole‐of‐community responsibility for responding to crises. Conclusion: This paper proposes how insights from people who have experienced crises can be translated into more beneficial crisis care. Patient or Consumer Contribution: Most authors are in identified lived experience roles. The first author engaged with participants during the recruitment and interviews and was explicit regarding their lived experience. Service users were involved as advisors, providing input throughout the study. [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]

Background: Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. Methods: Using Q‐methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow‐up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by‐person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. Results: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision‐making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. Conclusions: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. Patient or Public Contribution: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications. [ABSTRACT FROM AUTHOR]

Introduction: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer‐focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. Methods: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. Results: Thirty parent carers were interviewed, 19 of whom had experienced a health‐promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health‐promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self‐identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health‐promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health‐promoting activities of various kinds. Conclusion: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self‐determination theory. Patient or Public Contribution: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co‐ordinator (A. McD.) who is herself a parent carer. A study‐specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co‐authored by the team's Family Involvement Co‐ordinator (A. McD.). [ABSTRACT FROM AUTHOR]

Background: Globally, it is estimated that one in three adults live with two or more long‐term conditions (multiple long‐term conditions, MLTCs), that require self‐management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient‐healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self‐managing MLTCs, amongst people who experience socioeconomic deprivation. Methods: Semistructured one‐to‐one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. Findings: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self‐management, including social isolation, area‐based and economic exclusion, and health‐related stigma and (4) adapting self‐management strategies, including cost‐effective, and culturally/lifestyle appropriate strategies. Conclusions: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self‐management of MLTCs are of great importance. Patient or Public Contribution: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data. [ABSTRACT FROM AUTHOR]

Introduction: In England, primary care networks (PCNs) offer opportunities to improve access to and sustainability of general practice through collaboration between groups of practices to provide care with a broader range of practitioner roles. However, there are concerns that these changes may undermine continuity of care. Our study investigates what the organisational shift to PCNs means for continuity of care. Methods: The paper uses thematic analysis of qualitative data from interviews with general practitioners and other healthcare professionals (HCPs, n = 33) in 19 practices in five PCNs, and their patients (n = 35). Three patient cohorts within each participating practice were recruited, based on anticipated higher or lower needs for continuity of care: patients over 65 years with polypharmacy, patients with anxiety or depression and 'working age' adults aged between 18 and 45 years. Findings: Patients and clinicians perceived changes to continuity in PCNs in our study. Larger‐scale care provision in PCNs required better care coordination and information‐sharing processes, aimed at improving care for 'vulnerable' patients in target groups. However, new working arrangements and ways of delivering care in PCNs undermine HCPs' ability to maintain continuity through ongoing relationships with patients. Patients experience this in terms of reduced availability of their preferred clinician, inefficiencies in care and unfamiliarity of new staff, roles and processes. Conclusions: New practitioners need to be effectively integrated to support effective team‐based care. However, for patients, especially those not deemed 'vulnerable', this may not be sufficient to counter the loss of relationship with their practice. Therefore, caution is required in relation to designating patients as in need of, or not in need of continuity. Rather, continuity for all patients could be maintained through a dynamic understanding of the need for it as fluctuating and situational and by supporting clinicians to provide follow‐up care. Patient and Public Involvement (PPI): A PPI group was recruited and consulted during the study for feedback on the study design, recruitment materials and interpretation of findings. [ABSTRACT FROM AUTHOR]

Background: Motor neuron disease (MND) (also known as amyotrophic lateral sclerosis) is a life‐limiting neurodegenerative condition. In up to 20% of people with MND, a pathogenic variant associated with autosomal dominant inheritance can be identified. Children of people carrying a pathogenic variant have a 50% chance of inheriting this and a higher, although harder to predict, chance of developing the disease compared to the general adult population. This paper explores the experience of living with the genetic risk of MND. Methods: We undertook a UK‐based interview study with 35 individuals, including: 7 people living with genetically‐mediated forms of MND; 24 asymptomatic relatives, the majority of whom had an increased risk of developing the disease; and 4 unrelated partners. Results: We explore how individuals make sense of genetic risk, unpacking the interplay between genetic knowledge, personal perception, experiences of the disease in the family, age and life stage and the implications that living with risk has for different aspects of their lives. We balance an emphasis on the emotional and psychological impact described by participants, with a recognition that the salience of risk fluctuates over time. Furthermore, we highlight the diverse strategies and approaches people employ to live well in the face of uncertainty and the complex ways they engage with the possibility of developing symptoms in the future. Finally, we outline the need for open‐ended, tailored support and information provision. Conclusions: Drawing on wider literature on genetic risk, we foreground how knowledge of MND risk can disrupt individuals' taken‐for‐granted assumptions on life and perceptions of the future, but also its contextuality, whereby its relevance becomes more prominent at critical junctures. This research has been used in the development of a public‐facing resource on the healthtalk.org website. Patient or Public Contribution: People with experience of living with genetic risk were involved throughout the design and conduct of the study and advised on aspects including the topic guide, sampling and recruitment and the developing analysis. Two patient and public involvement contributors joined a formal advisory panel. [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]

Introduction: Telepractice service delivery of allied health interventions to people with disability can potentially reduce access barriers and improve service equity. However, questions remain regarding telepractice functionality for people with disability. This study addressed questions related to how allied health clinicians and managers perceive telepractice as functioning in the provision of therapy services to people with disability. Methods: Thirteen interviews of allied health clinicians and managers from across Australia were conducted between 21 November and 22 February via MS teams. Qualitative methodology and critical realist theoretical paradigm underpin the study. Data analysis was completed using a reflective thematic analysis method and five themes were generated and described utilising an analytic metaphor. Results: The study themes were described in relation to a shopping for shoes analytic metaphor and the five themes included (1) a shoe for every foot, (2) planned purchases, (3) shoe on the other foot, (4) you need both shoes and (5) help choosing their shoes. In summary, the function of telepractice fits differently for each individual, similar to pairs of shoes. Conclusions: Telepractice has its own strengths and weaknesses and isn't a direct substitute for in‐person sessions, much like left and right shoes are similar but not the same. The results support participant perceptions that telepractice functions best as an adjunct to in‐person sessions through a flexible hybrid delivery model in the provision of therapy services to people with a disability. A strategy for improving perceived usefulness may involve positioning telepractice as unique with strengths and weaknesses, not replacing in‐person care. Patient or Public Contribution: The paper forms part of a larger codesign process which included customer and carer participants throughout the design and planning of the project, inclusion of a peer researcher, and the selection of the analytic metaphor including in the findings of this article production. [ABSTRACT FROM AUTHOR]

Background: Co‐design is becoming common practice in the development of mental health services, however, little is known about the experience of such practices, particularly when young people are involved. Objective: The aim of this study was to conduct a process evaluation of the co‐design which was undertaken for the development of an intervention for youth and adolescents at risk of suicide. This paper briefly outlines the co‐design process undertaken during a COVID‐19 lockdown and then focuses on a qualitative evaluation of the experience of taking part in a co‐design process. Setting and Participants: The evaluation involved young consumers of a public youth mental health service, their carers/parents and service delivery staff who had taken part in the co‐design process. Method: This study used follow‐up semistructured interviews with the co‐design participants to explore their experience of the co‐design process. Inductive thematic analysis was used to draw out common themes from the qualitative data. Results: It was found that despite the practical efforts of the project team to minimise known issues in co‐design, challenges centred around perceptions regarding power imbalance, the need for extensive consultation and time constraints still arose. Discussion: Despite these challenges, the study found that the co‐design provided a human‐centred, accessible and rewarding process for young people, parents and staff members, leaving them with the feeling that they had made a worthwhile contribution to the design of the new service, as well as contributing to changing practice in service design. Conclusion: With sensitivity and adaptation to usual practice, it is possible to include young people with suicidal ideation, their parents/carers and professional staff in a safe and effective co‐design process. Patient and Public Contribution: The authors would like to thank and acknowledge the young people with a lived experience and their carers who participated in the co‐design process and research evaluation component of this study. We also wish to thank the clinical staff, peer workers and family peer workers who participated in this research. [ABSTRACT FROM AUTHOR]

Introduction: Neonatal care is complex, involving multiple people and technologies within a community of care. When preterm babies are cared for far from home and/or transferred between units, the whole community of care (and particularly parent participation) is disrupted. Although previous studies have captured subjective experiences of parents, there has been little research exploring the material practices undertaken by parents as a consequence of place‐of‐care decisions, or the social organisation of those practices. Methods: As part of a wider study exploring optimal place‐of‐care, semistructured interviews were conducted between July 2018 and October 2019 with 48 parents (36 families) with one or more preterm babies (born at 27–31 weeks gestation) cared for in a neonatal unit in the last 12 months. Findings: We highlight parents' labour‐intensive and stressful work to: (1) parent in the neonatal care community (an oversight role that goes beyond contemporary notions of 'involvement'); (2) create continuity amid place‐of‐care disruptions; and (3) adapt to the managerial logics of neonatal care settings. Our analysis focuses on the work generated by managerial systems that organise place‐of‐care decision‐making and other efficiency‐focused practices. Parents are absorbed into negotiating institutional systems and diverted from routine parenting activities. Conclusion: Those involved in the organisation and management of neonatal care should take account of how managerial systems impact parents' workload, ability to participate in their baby's community of care and, ultimately, on the wellbeing and development of babies and their families. Patient or Public Contribution: The OPTI‐PREM study embedded parents' experiences of neonatal care into the research, through a discrete workstream that employed qualitative methodology to capture parents' experiences—as reported in this paper. The OPTI‐PREM project was also supported by a Bliss volunteer parent panel, which was involved in designing and overseeing the research. Bliss 'champion[s] the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionals and enabling life‐changing research' (https://www.bliss.org.uk/about-us/about-bliss). A representative of Bliss is a co‐author of this manuscript, and a parent representative (named in the Acknowledgements) provided feedback during its preparation. [ABSTRACT FROM AUTHOR]

Background: Acute hospital wards can be difficult places for many people living with dementia. Promoting comfort and wellbeing can be challenging in this environment. There is little evidence‐based support for professionals working on acute care wards on how to respond to distress and maximise comfort and wellbeing among patients living with dementia. Objectives: Our overall aim was to codesign an evidence‐based easy‐to‐use heuristic decision‐support framework, which was acceptable and practical but acknowledges the complex and acute nature of caring for patients with dementia in the hospital. This paper presents the development process and resulting framework. Methods: A codesign study was informed by data from (1) a literature review of the care and management of people living with dementia in acute hospitals; (2) a cohort study of comfort and discomfort in people with dementia in acute hospitals; and (3) interviews with family carers and health care professionals. We synthesised evidence from these data sources and presented to key stakeholders through codesign meetings and workshops to produce our decision‐support framework. Results: The framework consists of a series of flowcharts and operates using a three‐stage process of: (1) assess comfort/discomfort; (2) consider causes of discomfort; and (3) address patient needs to manage the discomfort. Conclusion: Working with key stakeholders, synthesising diverse quantitative and qualitative evidence to build a clinical framework is a feasible approach to help address the needs of patients living with dementia in an acute hospital setting. The result is a framework which is now ready for evaluation and implementation. Patient and Public Contribution: We worked closely with people living with dementia and family carers throughout this study, including the development of the study protocol with input on study development and design, through to inclusion in stakeholder workshops and codesign of the decision support framework. [ABSTRACT FROM AUTHOR]

Introduction: Telepractice has the potential to align with the directive to reduce inequalities by United Nations Sustainable Development Goal 10. Telepractice additionally addresses a national digital health strategic plan for accessible digitally enabled models of care. To plan improvements, it is essential to understand the experience of telepractice for people with disability, which may be achieved through an approach such as journey mapping. The current article provides both a disability‐specific case study and a methodological guide for the inclusion of customers and clinicians in the meaningful redevelopment of services. The Perth, Australia‐based case study aimed to gain insights into the experience of telepractice for people with disability. The methodological aim describes using co‐design to produce a journey map in collaboration with customers and clinicians, for potential replication in a wide range of health and social care contexts. Method: Interview transcripts gathered from a cohort of customer participants (n = 17) were used to inform the journey map. A group of customers (n = 5) and clinicians plus one manager (n = 5) distributed the findings onto a customer experience journey map during a co‐design workshop. The journey map describes the emotional experience and actions taken, along five phases of a timeline through telepractice service interactions: (1) before, (2) selecting telepractice, (3) telepractice preparation, (4) during telepractice sessions and (5) after. Results: A journey map visualisation of customer experiences was produced that identified strengths of telepractice service delivery (flexibility) while noting challenges (with technology) as opportunities for improvement. The consensus of participants was the desire to have access to telepractice currently and in the future, in addition to in‐person delivery. Conclusion: These findings are valuable in the context of advocating for the incorporation of customers and clinicians through co‐design workshops in the content analysis and creation of a journey map that is representative of the lived experience of accessing telepractice services. Patient or Public Contribution: The paper forms part of a larger co‐design process that included customer participants throughout the design and planning of the project, inclusion of a peer researcher and the co‐designers in the workshops, journey map and this article production. [ABSTRACT FROM AUTHOR]

Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

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

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

Introduction: People who call emergency ambulances frequently are often vulnerable because of health and social circumstances, have unresolved problems or cannot access appropriate care. They have higher mortality rates. Case management by interdisciplinary teams can help reduce demand for emergency services and is available in some UK regions. We report results of interviews with people who use emergency ambulance services frequently to understand their experiences of calling and receiving treatment. Methods: We used a two‐stage recruitment process. A UK ambulance service identified six people who were known to them as frequently calling emergency services. Through third‐sector organisations, we also recruited nine individuals with healthcare experiences reflecting the characteristics of people who call frequently. We gained informed consent to record and transcribe all telephone interviews. We used thematic analysis to explore the results. Results: People said they make frequent calls to emergency ambulance services as a last resort when they perceive their care needs are urgent and other routes to help have failed. Those with the most complex health needs generally felt their immediate requirements were not resolved and underlying mental and physical problems led them to call again. A third of respondents were also attended to by police and were arrested for behaviour associated with their health needs. Those callers receiving case management did not know they were selected for this. Some respondents were concerned that case management could label frequent callers as troublemakers. Conclusion: People who make frequent calls to emergency ambulance services feel their health and care needs are urgent and ongoing. They cannot see alternative ways to receive help and resolve problems. Communication between health professionals and service users appears inadequate. More research is needed to understand service users' motivations and requirements to inform design and delivery of accessible and effective services. Patient or Public Contribution: People with relevant experience were involved in developing, undertaking and disseminating this research. Two public contributors helped design and deliver the study, including developing and analysing service user interviews and drafting this paper. Eight public members of a Lived Experience Advisory Panel contributed at key stages of study design, interpretation and dissemination. Two more public contributors were members of an independent Study Steering Committee. [ABSTRACT FROM AUTHOR]

Introduction: Associations between structural inequalities and health are well established. However, there is limited work examining this link in relation to mental health, or that centres public perspectives. This study explores people's experience and sense‐making of inequality in their daily lives, with particular consideration of impacts on mental health. Methods: We conducted a peer research study. Participants had to live in one of two London Boroughs and have an interest in inequalities and mental health. Using social media, newsletters, local organisations and our peer researchers' contacts, we recruited 30 participants who took photos representing their experience of inequality and discussed them during semi‐structured interviews. Data were analysed using reflexive thematic analysis. Results: Three themes were identified in this study: (1) inequalities are unjust, multilayered and intertwined with mental health. Accounts demonstrated a deep understanding of inequalities and their link to mental health outcomes, describing inequalities as 'suffering' and 'not good for anyone'. Financial, housing, immigration and healthcare problems exacerbated poor mental health, with racism, gender‐based violence and job loss also contributing factors for both poor mental health and experiences of inequality; (2) inequalities exclude and have far‐reaching mental health consequences, impacting personal sense of belonging and perceived societal value and (3) moving forwards—addressing long‐standing inequality and poor public mental health necessitated coping and resilience strategies that are often unacknowledged and undervalued by support systems. Conclusion: Lived experience expertise was central in this study, creating an innovative methodological approach. To improve public mental health, we must address the everyday, painful structural inequalities experienced by many as commonplace and unfair. New policies and strategies must be found that involve communities, redistributing resources and power, building on a collective knowledge base, to coproduce actions combatting inequalities and improving population mental health. Patient or Public Contribution: This study was peer‐led, designed and carried out by researchers who had experiences of poor mental health. Six authors of the paper worked as peer researchers on this study. [ABSTRACT FROM AUTHOR]