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Background: The hospital discharge process poses significant safety risks for older patients due to complexities in communication and coordination among stakeholders, leading to potential drug‐related problems post‐discharge. Adopting a person‐centred care (PCC) approach in medication communication by healthcare professionals (HCPs) is crucial to ensure positive health outcomes. This study aimed to explore the practice of PCC in medication communication between older patients and HCPs during the hospital discharge process. Methods: We conducted a qualitative study using non‐participatory direct observations of patient–HCP consultations during hospital discharge, followed by semi‐structured interviews with observed patients and, when applicable, their informal caregivers. Data collection occurred from October 2020 to May 2021 at two Swedish hospitals. We gathered data using an observational form and audio‐recorded all consultations and interviews. The data were analysed thematically using the systematic text condensation method. Results: Twenty patients were included (median age: 81 years [range: 65–94]; 9 female) in observations and 13 of them participated in interviews. Two patients were accompanied by an informal caregiver during the interviews. Three main themes were identified: (1) The impact of traditional authoritarian structures, depicts power dynamics between patients and their HCPs, showing how traditional structures influence the practice of PCC in medication communication during hospital discharge; (2) Consultation timing and mode not on patients' terms, describes suboptimal times and settings for consultations, along with the use of complex language that hinders effective communication; and (3) Discrepancy in expectations of self‐care ability, illustrates a mismatch between the self‐care guidance provided by HCPs during hospital discharge and the actual needs and preferences of patients and informal caregivers. Conclusion: Medication communication between older patients and HCPs during hospital discharge is frequently inconsistent with the practice of PCC. Not only must HCPs improve their communication strategies, but patients and their informal caregivers should also be better prepared for discharge communication and encouraged to participate in their care. This involvement would give them relevant knowledge and tailor communication to their individual needs, preventing problems in managing their medications after discharge. Patient or Public Contribution: An advisory group of six patients and/or informal caregiver contributors provided input on the study design, edited the consent forms, and helped develop the interview guide. [ABSTRACT FROM AUTHOR]

Background: Care transitions from hospital to home are a critical period for patients and their families, especially after a stroke. The aim of this study was to assess the feasibility, fidelity and acceptability of a co‐designed care transition support for stroke survivors. Methods: A non‐randomised controlled feasibility study recruiting patients who had had stroke and who were to be discharged home and referred to a neurorehabilitation team in primary healthcare was conducted. Data on the feasibility of recruitment and fidelity of the intervention were collected continuously during the study with screening lists and checklists. Data on the perceived quality of care transition were collected at 1‐week post‐discharge with the Care Transition Measure. Data on participant characteristics, disease‐related data and outcomes were collected at baseline (hospitalisation), 1 week and 3 months post‐discharge. Data on the acceptability of the intervention from the perspective of healthcare professionals were collected at 3 months using the Normalisation Measure Development Questionnaire. Results: Altogether, 49 stroke survivors were included in the study: 28 in the intervention group and 21 in the control group. The recruitment and data collection of patient characteristics, disease‐related data, functioning and outcomes were feasible. The fidelity of the intervention differed in relation to the different components of the co‐designed care transition support. The intervention was acceptable from the perspective of healthcare professionals. Concerns were raised about the fidelity of the intervention. A positive direction of effects of the intervention on the perceived quality of the care transition was found. Conclusion: The study design, data collection, procedures and intervention were deemed feasible and acceptable. Modifications are needed to improve intervention fidelity by supporting healthcare professionals to apply the intervention. The feasibility study showed a positive direction of effect on perceived quality with the care transition, but a large‐scale trial is needed to determine its effectiveness. Patient or Public Contribution: Stroke survivors, significant others and healthcare professionals were involved in a co‐design process, including the joint development of the intervention's components, contextual factors to consider, participant needs and important outcomes to target. Trial Registration: ClinicalTrials.gov ID: NCT0292587. [ABSTRACT FROM AUTHOR]

Introduction: Organised by the 'Qualitative Long Covid Network', a workshop for qualitative Long COVID (LC) researchers, LC charity representatives and people with LC took place in June 2023, where research on the intersectional inequalities affecting LC prevalence, recognition and care was shared and discussed. Methods: Five key themes were drawn up from presentations, discussions and reflections during the workshop, which are presented in this study. Results: The following five themes are discussed: the unfairness of LC, difficulties in accessing care, mistrust of the healthcare system, a lack of understanding of LC and experiences of stigma and discrimination. Factors that widen or narrow inequalities related to LC were identified. Conclusion: A call to action is proposed to investigate and address inequalities through a robust LC research agenda that speaks with conviction to policy and decision‐makers. We argue that there needs to be a strong investment in research and evidence‐based policy and practice to mitigate the worst effects of the condition and address the inequalities in experience, treatment and support, which are experienced more often and more acutely by some of society's most vulnerable and disadvantaged individuals. Patient and Public (PPI) Contribution: Projects included in this article had PPI ongoing activity to inform their research. A member of the CONVALESCENCE PPI group presented at the QLC Network 'Long Covid and Health Inequalities' workshop, as did members of Long COVID Kids, Long COVID Support and Long COVID SOS charities. They were all invited to be co‐authors of this article. [ABSTRACT FROM AUTHOR]

Background: People with stroke and their families face numerous challenges as they leave hospital to return home, often experiencing multifaceted unmet needs and feelings of abandonment. The essential elements of an intervention intended to support transition‐to‐home after stroke are unclear. Objective: The aim of the project was to engage in a co‐design process to identify the key components of a pragmatic intervention to inform a transition‐to‐home support pathway following stroke. Materials and Methods: The study was conducted using a co‐design process engaging multiple stakeholders, including 12 people with stroke, 6 caregivers, 26 healthcare professionals and 6 individuals from stroke organisations in a series of three workshops, facilitated by the primary researcher, a wider team of researchers and an individual with lived experience of stroke. World Café methodology and Liberating Structures facilitation techniques were adapted to meet the aim of the workshops. Data collection involved observations during workshops, followed by summarising of findings and reaching group consensus agreement on outputs. Facilitated consensus on a prioritisation task resulted in the final output. Results: The co‐design group identified 10 key intervention components of a transition‐to‐home support pathway following stroke. These components focussed on enhancing collaboration, streamlining transition processes and facilitating post‐discharge support. While a stroke coordinator was considered a top priority, increased cross‐setting information sharing and community in‐reach, where community‐based healthcare staff extended their services into hospital settings to provide continuity care, were considered most feasible to implement. Conclusion: The co‐design approach, involving a multi‐stakeholder group and strengthened by patient and public involvement, ensured that the identified transition‐to‐home intervention components are meaningful and relevant for people with stroke and their families. Further co‐design workshops are required to refine, and feasibility test the components for generalisability within the wider Irish healthcare setting. Patient or Public Contribution: Individuals who have experienced a stroke actively contributed to shaping the methodological design of this study and the ethics process. They engaged in the analysis of co‐design outputs and provided input for the discussion and recommendations regarding future research. An individual who had experienced a stroke formed part of the research team, co‐facilitating the co‐design workshops and co‐authoring this article. [ABSTRACT FROM AUTHOR]

Introduction: Divided narratives pose long‐standing difficulties in physician and patient communication. In decision‐making on cancer treatment, divided narratives between physicians and patients hinder mutual understanding and agreement over the illness and its treatment. For effective decision‐making on treatments, it is necessary to investigate the similarities and differences in these divided narratives. Methods: This study adopted a qualitative research design of narrative inquiry to examine the data, which included interviews with 32 cancer patients and 16 paired physicians in two hospitals in China. Data analysis was conducted using grounded theory to generate findings. Results: Both physicians and patients were concerned about goals and obstacles to their decision‐making on cancer treatment. Four common aspects of goal setting were identified from the divided narratives: decision pools, treatment goals, identity practice and preferred identity. Four common obstacles were identified: pains and trust, communication gap, financial issues and complex family. However, the meanings attached to these eight aspects differed between physicians and patients. Conclusion: Cancer treatment decision‐making is an encounter of the scientific world and lifeworld. A divided narrative approach can identify the similarities and differences in the decision‐making on cancer treatment between physicians and patients. Physicians generally adopt a rational decision‐making approach, whereas patients generally adopt a relational decision‐making approach. Despite the common concerns in their goals and obstacles, physicians and patients differed in their contextualized interpretations, which demonstrates the physicians' and the patients' pursuit of preferred identities in decision‐making. The results of this study provide a new perspective to treatment decision‐making, emphasizing the importance of narrative integration in reaching mutual agreement. Patient and Public Contribution: The findings were shared with 15 cancer patients and caregivers for feedback and advice in June 2024. This study was also presented at the international conferences of COMET (International and Interdisciplinary Conference on Communication, Medicine, and Ethics) and ICCH (International Conference on Communication in Healthcare) 2023 for continuous feedback and comments. [ABSTRACT FROM AUTHOR]

Introduction: The increasing prevalence of dementia in the United Kingdom presents significant challenges for healthcare, with projections estimating over a million affected individuals by 2025, costing the NHS £6.3 billion annually. Hospital admissions among dementia patients are common, occupying about 25% of UK hospital beds and leading to prolonged stays and diminished health outcomes. Method: This paper presents the opening stages, part of a larger project where Patient and Public Involvement and Engagement (PPIE) was employed to understand and navigate what it means for hospital care for a person living with dementia. To understand hospital care for dementia patients, focus groups were conducted through dementia cafés in Essex and Suffolk from February to July 2023 engaging patients, carers and family members. Results: Recognised processes for reporting PPIE and thematic analysis were used and identified six themes and 21 subthemes regarding hospital care: individualised care, role of carers, basic care, interpersonal communication, information sharing and staffing. Discussion: The results from the PPIE will be used to inform and work with stakeholders through the next phases of the project, which involves examining care processes in the hospital, identifying touchpoints and evaluating these areas. The project continues to be informed by stakeholders including people living with dementia, carers and staff. Additionally, the results may inform other service providers for care enhancements, processes and delivery. Conclusion: Moving forward, the study emphasises the importance of building collaborative relationships with stakeholders involved in dementia care. Additionally, it provides insights to focus areas that are fundamental for acute care organisations when delivering care to people living with dementia. By incorporating insights from PPIE, this project seeks to identify inequalities in dementia care services, improve hospital care for people living with dementia, fostering a more inclusive and supportive healthcare environment. Patient or Public Contribution: The purpose of the study was to explore the most important issues around hospital care for people with dementia, their carers and families. Persons living with dementia, carers and family members were involved in the study through community dementia cafés and recruited to take part in focus groups to discuss hospital care for patients with dementia. The design of questions and materials for the discussions was developed through consultation with the university department's service user lead and dementia specialist and reviewed by a service user member living with dementia. A pilot focus group was conducted with a group of carers. We worked with the dementia café managers to coordinate recruitment and a suitable environment to run the focus groups. Trial Registration: Not applicable. [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: Despite high levels of mental ill‐health amongst young people (aged 15–30), this group demonstrates low help‐seeking and high drop‐out from mental health services (MHS). Whilst shared decision‐making can assist people in receiving appropriate and effective health care, young people frequently report that they do not feel involved in treatment decisions. The current study focused on co‐design of a clinical education and participant information programme for the Brain and Mind Centre Youth Model of Care. This model, which articulates a youth‐focused form of highly personalised and measurement‐based care, is designed to promote shared decision‐making between young people and clinical service providers. Methods: We conducted workshops with 24 young people (16–31; MAge = 21.5) who had accessed mental health services. Participants were asked what advice they would give to young people entering services, before giving advice on existing materials. Workshops were conducted and transcripts were coded using thematic analysis by two lived experience researchers and a clinical researcher. Results: Young people found it empowering to be educated on transdiagnostic models of mental illness, namely clinical staging, which gives them a better understanding of why certain treatments may be inappropriate and ineffective, and thus reduce self‐blame. Similarly, young people had limited knowledge of links between mental health and other life domains and found it helpful to be educated on multidisciplinary treatment options. Measurement‐based care was seen as an important method of improving shared decision‐making between young people and health professionals; however, to facilitate shared decision‐making, young people also wanted better information on their rights in care and more support to share their expertise in their own needs, values and treatment preferences. Conclusions: These findings will inform the delivery of the further development and implementation of a youth‐specific clinical education and participant information programme for the BMC Youth Model. Patient or Public Contribution: Workshops were facilitated by researchers with lived expertise in mental ill‐health (A.H. and/or C.G.) and a clinical researcher (who has expertise as an academic and a clinical psychologist). A.H. and C.G. were also involved in conceptualisation, analysis, interpretation, review and editing of this paper. [ABSTRACT FROM AUTHOR]

Background: Experience‐Based Co‐Design (EBCD) is a multi‐stage participatory action research process which was developed originally to increase patient involvement in service improvement initiatives. This viewpoint article serves as a reflection on the researchers' experiences, focusing on the application and feasibility of participatory approaches, particularly co‐design, in the specific context of early‐phase clinical trials. Methods: We reflect on the opportunities and challenges of applying EBCD in a new context of early‐phase clinical trials in oncology where experimental treatments are increasingly perceived as a therapeutic option and, in certain instances, their efficacy may lead to accelerated approval facilitating a swifter integration into standard care. Results: We propose that the opportunity of applying EBCD in such trials lies in improving the delivery of person‐centered care, care coordination, and support during the transition from experimental to standard care. Three potential challenges when applying EBCD in early‐phase clinical trials are discussed related to: the need for standardization in trial processes; planning EBCD in a context of high uncertainty; and vulnerability of patient populations. Conclusion: Integrating EBCD into early‐phase oncology trials presents an opportunity to enhance person‐centered care and can lead to simultaneous improvements in care processes and therapeutic development. Patient or Public Contribution: This article has been developed with the collaboration of a patient partner who serves on the advisory board of our ongoing EBCD study in early clinical trials. [ABSTRACT FROM AUTHOR]

Introduction: In response to evolving patient‐centred care initiatives, this study investigates teasing in Chinese outpatient interactions. By exploring how teasing impacts knowledge exchange and decision‐making processes, the research underscores its utility in enhancing patient engagement and communication efficacy, aligning with China's healthcare reform objectives. Methods: Utilizing conversation analysis, the study meticulously examines a series of outpatient interactions, identifying and analyzing instances of teasing. Through a detailed investigation of the sequential organization, design features, and interactional tasks accomplished by teasing, the research unravels the complex mechanisms through which teasing operates within clinical settings. Results: Findings reveal that teasing is a sequential accomplishment that is intertwined with institutional contingencies and embedded in overarching sequential projects of clinics. Teases often arise from subtle cues that may lead to delicate moments and are crafted with a blend of playfulness and seriousness, serving to bridge the gap between patient experiences and medical expertise. This study highlights how teasing facilitates the exchange of knowledge and influences collaborative decision‐making, marking a departure from its more casual use in everyday interactions. Teasing acts as a catalyst for a more profound comprehension of medical facts, encouraging patients to actively participate in their care by expressing concerns and preferences, thus aligning medical decisions with patient autonomy. The responses to teases vary, reflecting the complexity of clinical communication and the need for a delicate balance between humour and professionalism. Conclusions: The study underscores the significance of teasing as a multifaceted communicative practice within outpatient clinical interactions. It highlights how teasing can contribute to a more nuanced and patient‐centred approach to healthcare, enhancing the collaborative exploration of medical advice and fostering a more engaging and empathetic clinical environment. Patient or Public Contribution: This study utilized real outpatient interactions, with participants' informed consent. The analysis focused on authentic teasing exchanges between clinicians and patients, ensuring the findings reflect genuine communication practices in healthcare settings. Participants, including both healthcare professionals and patients, were informed about the study's goals and their essential role in providing insights into clinician–patient communication, contributing to a deeper understanding of interaction dynamics in outpatient clinics. [ABSTRACT FROM AUTHOR]

Introduction and Aims: Stroke survivors with aphasia (impaired language/communication) have poor outcomes and gaps in the clinical implementation of best practice contribute to this. Little is known, however, about speech pathologist perspectives on the touchpoints (key moments shaping experiences) in the clinical care pathway that have the greatest impact on service delivery nor how this varies by geographical location. We explored the experiences of speech pathologists who provide aphasia services to establish priorities for improvement and design. Methods and Analysis: This is the initial experience gathering and priority identification stage of an experience‐based co‐design (EBCD) project. Speech pathologists were recruited from 21 geographically diverse Hospital and Health Services in Queensland, Australia. Speech pathologists working in acute, rehabilitation and community services shared positive and negative experiences of delivering aphasia care in interviews and focus groups. Experiential data were analysed using qualitative thematic analysis to determine touchpoints. Priorities for service design were identified using an adapted nominal group technique. Results: Speech pathologists (n = 62) participated in 16 focus groups and nine interviews and shared 132 experiences of delivering aphasia care. Providing care in teams with poor awareness of the impacts of aphasia was identified as a key challenge, as poor patient‐provider communication was perceived to increase risk of adverse outcomes for patients. Speech pathologists identified areas for improvement related to their own professional needs (e.g., greater access to clinical supervision); collaborative health care (e.g., better coordination and interdisciplinary care to increase therapy time); and the service context and environment (e.g., psychological services able to support diverse communication needs). Conclusions: Speech pathologist delivery of aphasia services could be improved through increased access to clinical supervision, opportunities for peer debriefing and interdisciplinary care. Priorities for service design varied by geographical location and included: education to support care transitions (remote areas), improved referral pathways and service linkage (regional areas) and dedicated aphasia staffing (metropolitan areas). Patient or Public Contribution: A consumer advisory committee comprising people with aphasia (n = 3, authors K.M., K.D. and B.A.), their significant others (n = 2, authors J.D. and P.M.), and a Cultural Capability Officer (author G.B.) guided this research. The team: (1) reviewed participant information; (2) co‐designed surveys and workshop resources; (3) copresented research outcomes and contributed to publications. Research questions and study design (e.g., analysis methods and assessment measures) were developed by the research team (authors L.A., V.J.P., D.A.C. and S.J.W.). [ABSTRACT FROM AUTHOR]

Introduction: Over a fifth of pregnant women are living with multiple long‐term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long‐term health conditions around the time of pregnancy. Methods: Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long‐term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis. Results: Fifty‐seven women and 51 healthcare professionals participated. Five themes were identified. Women with long‐term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long‐term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites. Conclusion: Pregnant women with long‐term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies. Patient or Public Contribution: Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group. [ABSTRACT FROM AUTHOR]

Objective: Obesity is a complex, chronic, relapsing disease that requires an individualised approach to treatment. However, weight stigma (WS) experienced in healthcare settings poses a significant barrier to achieving person‐centred care for obesity. Understanding the experiences of people living with obesity (PwO) can inform interventions to reduce WS and optimise patient outcomes. This study explores how patients with obesity perceive WS in general practice settings; its impact on their psychological well‐being and health behaviours, and the patients suggestions for mitigating it. Methods: In‐depth semistructured interviews were conducted with 11 PwO who had experienced WS in general practice settings in Ireland. The interviews were conducted online via Zoom between May and August 2023; interviews lasted between 31 and 63 min (M = 34.36 min). Interviews were audio‐recorded, transcribed verbatim and analysed using inductive reflexive thematic analysis. Results: Three overarching themes specific to participants' experience of WS in general practice were generated: (1) shame, blame and 'failure'; (2) eat less, move more—the go‐to treatment; (3) worthiness tied to compliance. A fourth theme: (4) the desire for a considered approach, outlines the participants' suggestions for reducing WS by improving the quality of patient–provider interactions in general practice. Conclusion: The findings call for a paradigm shift in the management of obesity in general practice: emphasising training for GPs in weight‐sensitive communication and promoting respectful, collaborative, and individualised care to reduce WS and improve outcomes for people with obesity. Patient or Public Contribution: PPI collaborators played an active and equal role in shaping the research, contributing to the development of the research questions, refining the interview schedule, identifying key themes in the data, and granting final approval to the submitted and published version of the study. [ABSTRACT FROM AUTHOR]

Background: Integrated care is based around values of involvement and shared decision‐making, but these are not often reflected within planning and implementation. Barriers include continued emphasis on professional and managerial perspectives, skills gaps on how best to engage people and communities and insufficient investment in involvement infrastructure. Despite such challenges, people with lived experience have still led changes in policy and services. Design: Qualitative study involving 25 participants with lived experience from 12 countries. Participants shared their background stories and engaged in semistructured interviews relating to leadership identity, experience of influencing and personal learning. Transcripts were analysed through a framework approach informed by narrative principles. Results: Participants were motivated by their own experiences and a wish to improve care for future individuals and communities. Sharing their story was often the entry point for such influencing. Participants gained skills and confidence in story telling despite a lack of support and development. Many felt comfortable being described as a leader while others rejected this identity and preferred a different title. No common alternative term to leader was identified. Influencing services required considerable personal cost but also led to new networks, skills development and satisfaction when change was achieved. Discussion: Leadership within integrated care is often awarded to those with structural power related to management or clinical seniority. People with lived experience are though uniquely placed to identify what needs to change and can develop inspiring visions based around their personal stories. Claiming identity as leader can be challenging due to traditional notions of who is eligible to lead and unwillingness by professionals and managers to grant such identity. Conclusions: People with lived experience should be recognised as leaders of integrated care and have access to developmental opportunities and practical support to strengthen their skills, including that of storytelling. Patient and Public Contribution: The research was instigated on the request of a community advisory board of people with lived experience who shaped its design, contributed to the analysis and informed the conclusions and implications. [ABSTRACT FROM AUTHOR]

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

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]

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

Context: Engaging with peers is gaining increasing interest from healthcare systems in numerous countries. Peers are people who offer support by drawing on lived experiences of significant challenges or 'insider' knowledge of communities. Growing evidence suggests that peers can serve as a bridge between underserved communities and care providers across sectors, through their ability to build trust and relationships. Peer support is thus seen as an innovative way to address core issues of formal healthcare, particularly fragmentation of care and health inequalities. The wide body of approaches, goals and models of peer support speaks volumes of such interest. Navigating the various labels used to name peers, however, can be daunting. Similar terms often hide critical differences. Objectives/Background: This article seeks to disentangle the conceptual multiplicity of peer support, presenting a conceptual map based on a 3‐year knowledge synthesis project involving peers and programme stakeholders in Canada, and international scientific and grey literature. Synthesis/Main Results: The map introduces six key questions to navigate and situate peer support approaches according to peers' roles, pathways and settings of practice, regardless of the terms used to label them. As a tool, it offers a broad overview of the different ways peers contribute to integrating health and community care. Discussion: We conclude by discussing the map's potential and limitations to establish a common language and bridge models, in support of knowledge exchange among practitioners, policymakers and researchers. Patient or Public Contribution: Our team includes one experienced peer support worker. She contributed to the design of the conceptual map and the production of the manuscript. More than 10 peers working across Canada were also involved during research meetings to validate and refine the conceptual map. [ABSTRACT FROM AUTHOR]

Background: There is a need for better implementation of patient‐centred (PC) communication and shared decision‐making (SDM) in routine cancer care. Objective: The aim of this study was to assess whether a programme to implement SDM in oncology had effects on PC communication in clinical encounters. Design: This study constitutes a secondary analysis of data derived from an implementation trial applying a stepped wedge design that, among other strategies, incorporated training and coaching to enhance the PC communication skills of physicians. Setting and Participants: We analysed audio recordings of clinical encounters collected in three departments of a comprehensive cancer centre in Germany before and after rolling out the implementation programme. Main Variables Studied: We assessed the PC communication skills of physicians. Main Outcome Measures: Each recording was rated by two researchers using the German version of the Four Habits Coding Scheme (4HCS), an observer‐based measure of PC communication. Interrater reliability of the outcome measure was acceptable but moderate. Demographic data of patients participating in audio recordings were analysed. Methods: Data were analysed using descriptive statistics and linear mixed‐effects models. Results: In total, 146 encounters, 74 before and 72 after implementation, were evaluated. The mean age of patients was 57.1 years (SD = 13.8), 70.3% were female, the largest portion of patients had medium formal education (32.4%) and were (self‐) employed (37.8%). No statistically significant effect of the implementation programme on the physicians' PC communication skills was found. Discussion: The results indicate that the investigated programme to implement SDM in oncology, including training and coaching, had no effects on PC communication in clinical encounters. These results are in contrast to other studies that report the effects of specific training or coaching on PC communication. Reasons for the lack of effect include the short duration of our training compared to other studies, limited reliability and moderate interrater reliability of the 4HCS scale, limited reach of the intervention programme as well as the inclusion of physicians regardless of their exposure to the interventions. Conclusion: Further research is needed to develop implementation strategies that improve physicians' PC communication skills. Patient Contribution: Data on patients and clinical encounters with patients and physicians were analysed. There was no other patient or public involvement. [ABSTRACT FROM AUTHOR]

Background: This study investigated healthcare access and quality for people who are transgender and gender‐diverse (PTGD) in Saskatchewan (SK), Canada, to inform a larger project that was piloting two peer health navigators for PTGD. Methods: Two online focus groups were held. Nineteen participants were recruited to represent a broad range in age, gender and location in SK. Transcripts of the focus groups were analyzed using a thematic approach. Results: The core theme that was identified was participants' desire for culturally safe healthcare. This core theme had two component themes: (1) systemic healthcare factors and (2) individual healthcare provider (HCP) factors. The healthcare system primarily acted as a barrier to culturally safe healthcare. HCPs could be either barriers or facilitators of culturally safe care; however, negative experiences outweighed positive ones. Conclusions: PTGD in SK face discrimination, with delays and barriers to care at all levels of the healthcare system. Peer health navigators can address some of these discrepancies; however, greater support is required for PTGD to be able to access culturally safe healthcare. Patient or Public Contribution: People with lived experience/PTGD were involved in all stages of this project. They were included on the team as community researchers and co‐developed the research project, conducted the focus groups, participated in the analyses and are co‐authors. As well, both navigators and all the participants in the focus groups were also PTGD. [ABSTRACT FROM AUTHOR]

Purpose: Long Covid syndrome is a multiorgan condition with multiple sequelae affecting quality of life, capacity to work and daily activities. The advantages that new technologies can offer are presented as an opportunity in the current healthcare framework. Objective: This research aimed to explore people with Long Covid's experiences with a digital physiotherapy practice intervention, during four weeks. Methods: Qualitative semistructured interviews were conducted by video call. Thirty‐two Long Covid participants were invited to join an in‐depth interview once the intervention was completed. Participants were queried on their intervention experiences and perceptions, as well as any lifestyle changes made, as a result of receiving digital physiotherapy practice. The interviews were transcribed and analysed using inductive qualitative content analysis. Results: In‐depth qualitative analysis has revealed four themes that reflect participants' perceptions of digital physiotherapy intervention. The helpfulness of the exercises, interaction with the physiotherapist, the domestic use of technology and the future of digital health practice were the topics highlighted by Long Covid participants. Some improvements have been suggested including video sounds and the need to introduce face‐to‐face sessions. Participants stated that interventions were helpful and superior to printed exercise sheets, mobile phone apps and usual care received. This intervention did not present major barriers, highlighting the importance of personalized care and continuity in the provision of health services. Conclusion: The digital physiotherapy practice is perceived by people with Long Covid as an appropriate method for the care of their health needs. Participants stated the need for this type of intervention in the public health system, where it would eliminate waiting lists, facilitate accessibility and improve existing care. Patient and Public Contribution: Participants contributed to the interpretation of the data acquired in the interview. Clinical Trial Registration: Trial registration NCT04742946. [ABSTRACT FROM AUTHOR]

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

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: Decisions about driving for individuals living with dementia (ILWD) can be challenging. There are limited evidence‐based person‐centred interventions in the United Kingdom that support decisions about transitioning to not driving or guidelines for developing decision aids for ILWD. This study aimed to understand the important features of a decision aid through the cultural adaptation of Australian dementia and driving decision aid (DDDA) for ILWD residing in the United Kingdom. Methods: This qualitative study was theoretically underpinned by a person‐centred framework and conducted over three stages: (1) Development of a draft UK‐specific DDDA; (2) semistructured interviews with ILWD and an online survey with stakeholders to obtain their views on a draft UK DDDA and (3) content analysis and synthesis of qualitative data to inform the final version of the decision aid. Results: Eleven ILWD and six of their spouses participated in interviews, and 102 stakeholders responded to an online survey. The four broad features identified as important to include in a decision aid for drivers living with dementia were: a structured and interactive format; positive and supportive messaging and presentation; relevant and concise content and choice‐centred. The perceived benefits of the decision aid were identified as supporting conversations, enhancing collaborative decision making and enabling agency with decisions about driving and future mobility options. Conclusions: Decision aids that are underpinned by interactive choice‐driven questions enhance a person‐centred approach to decisions about driving. Positively framing decision aids through the presentation and content can facilitate engagement with the decision‐making process about driving. The findings have implications for the development of decision aids designed for ILWD on other important health and social topics. Patient and Public Involvement: Advocating for the development of a UK DDDA were ILWD. Healthcare professionals contributed to the development of a draft UK DDDA. Former and current drivers living with dementia, family members, healthcare professionals and other support networks of ILWD participated in interviews or an online survey which informed the final version of the UK DDDA. [ABSTRACT FROM AUTHOR]

Introduction: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). Methods: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co‐researchers in the research team, various groups of YPCC were involved in decision‐making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. Results: Initially, the two co‐researchers were involved in the roles of informer and co‐thinker, but their decision‐making power within the study increased over time. In the final stages of the study, the co‐researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co‐thinkers in all stages of the study. Conclusion: The PPI of two YPCCs as co‐researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. Patient or Public Contribution: YPCC played a significant role in the present study. Two YPCC—who are also co‐authors of this paper—were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session. [ABSTRACT FROM AUTHOR]

Background: Returning home from the hospital for palliative‐focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. Objective: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital‐to‐home transitions for adult patients receiving palliative care and their caregiver(s). Methods: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low‐fidelity prototype testing to review CDW outputs and develop low‐fidelity prototypes of interventions. HCPs provided feedback on the viability of low‐fidelity prototypes. Results: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low‐fidelity prototype sessions to 20 HCPs. Participants in the low‐fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. Conclusion: Insights gained from this codesign work will inform high‐fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital‐to‐home transitions for patients receiving a palliative approach to care. Patient or Public Contribution: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient‐ and caregiver‐centred. [ABSTRACT FROM AUTHOR]

Background: There is a growing momentum around the world to foster greater opportunities for the involvement of mental health service users in their care and treatment planning. In‐principle support for this aim is widespread across mental healthcare professionals. Yet, progress in mental health services towards this objective has lagged in practice. Objectives: We conducted a systematic review of quantitative, qualitative and mixed‐method research on interventions to improve opportunities for the involvement of mental healthcare service users in treatment planning, to understand the current research evidence and the barriers to implementation. Methods: Seven databases were searched and 5137 articles were screened. Articles were included if they reported on an intervention for adult service users, were published between 2008 and October 2023 and were in English. Evidence in the 140 included articles was synthesised according to the JBI guidance on Mixed Methods Systematic Reviews. Results: Research in this field remains exploratory in nature, with a wide range of interventions investigated to date but little experimental replication. Overarching barriers to shared and supported decision‐making in mental health treatment planning were (1) Organisational (resource limitations, culture barriers, risk management priorities and structure); (2) Process (lack of knowledge, time constraints, health‐related concerns, problems completing and using plans); and (3) Relationship barriers (fear and distrust for both service users and clinicians). Conclusions: On the basis of the barriers identified, recommendations are made to enable the implementation of new policies and programs, the designing of new tools and for clinicians seeking to practice shared and supported decision‐making in the healthcare they offer. Patient or Public Contribution: This systematic review has been guided at all stages by a researcher with experience of mental health service use, who does not wish to be identified at this point in time. The findings may inform organisations, researchers and practitioners on implementing supported decision‐making, for the greater involvement of people with mental ill health in their healthcare. [ABSTRACT FROM AUTHOR]

Introduction: The transition from hospital to home is often suboptimal, resulting in patients not receiving the necessary allied healthcare after discharge. This may, in turn, lead to delayed recovery, a higher number of readmissions, more emergency department visits and an increase in mortality and healthcare costs. This study aimed to gain insight into patients' experiences, perceptions, and needs regarding hospital‐to‐home transition, focusing on allied healthcare as a first step towards the development of a transitional integrated allied healthcare pathway for patients with complex care needs after hospital discharge. Methods: We conducted semistructured interviews with patients. Participants were recruited from universities and general hospitals in the Amsterdam region between May and July 2023. They were eligible if they (1) were discharged from the hospital minimally 3 and maximally 12 months after admission to an oncologic surgery department, internal medicine department, intensive care unit, or trauma centre, (2) received hospital‐based care from at least one allied healthcare provider, who visited the patient at least twice during hospital admission, (3) spoke Dutch or English and (4) were 18 years or older. Interviews were audio‐recorded and transcribed verbatim. We performed a thematic analysis of the interview data. Results: Nineteen patients were interviewed. Three themes emerged from the analysis. 'Allied healthcare support during transition' depicts patients' positive experiences when they felt supported by allied health professionals during the hospital‐to‐home transition. 'Patient and family involvement' illustrates how much patients value the involvement of their family members during discharge planning. 'Information recall and processing' portrays the challenges of understanding and remembering overwhelming amounts of information, sometimes unclear and provided at the wrong moment. Overall, patients' experiences of transitional care were positive when they were involved in the discharge process. Negative experiences occurred when their preferences for postdischarge communication were ignored. Conclusions: This study suggests that allied health professionals need to continuously collaborate and communicate with each other to provide patients and their families with the personalized support they need. To provide high‐quality and person‐centred care, it is essential to consider how, when, and what information to provide to patients and their families to allow them to contribute to their recovery actively. Patient or Public Contribution: The interview guide for this manuscript was developed with the assistance of patients, who reviewed it and provided us with feedback. Furthermore, patients provided us with their valuable lived experiences by participating in the interviews conducted for this study. [ABSTRACT FROM AUTHOR]

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

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]

Background: Social robots are promising tools to improve the quality of life of children and youth living with anxiety and should be developed based on the priorities of end users. However, pathways to include young people in patient‐oriented research, particularly in the overlap between technology and mental health, have been historically limited. Objective: In this work, we describe engagement with experts with lived experiences of paediatric anxiety in a social robotics research programme. We report the experiences of patient advisors in a co‐creation process and identify considerations for other research groups looking to involve end users in technology development in the field of youth mental health. Design: We engaged individuals with a lived experience of paediatric anxiety (current, recent past, or from a parent perspective) using three different models over the course of three years. Two initial patient partners were involved during project development, eight were engaged as part of an advisory panel ('the League') during study development and data analysis and four contributed as ongoing collaborators in an advisory role. League members completed a preparticipation expectation survey and a postparticipation experience survey. Findings: Eight individuals from a range of anxiety‐related diagnostic groups participated in the League as patient partners. Members were teenagers (n = 3), young adults aged 22–26 years who had connected with a youth mental health service as children within the past eight years (n = 3) or parents of children presently living with anxiety (n = 2). Preferred methods of communication, expectations and reasons for participating were collected. The League provided specific and actionable feedback on the design of workshops on the topic of social robotics, which was implemented. They reported that their experiences were positive and fairly compensated, but communication and sustained engagement over time were challenges. Issues of ethics and language related to patient‐centred brain health technology research are discussed. Conclusions: There is an ethical imperative to meaningfully incorporate the voices of youth and young adults with psychiatric conditions in the development of devices intended to support their mental health and quality of life. Patient or Public Contribution: Six young people and two parents with lived experiences of paediatric anxiety participated in all stages of developing a research programme on social robotics to support paediatric mental health in a community context. They also provided input during the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Background: In July 2022, self‐collection became universally available as part of Australia's National Cervical Screening Program. This change aims to address screening inequities experienced among underscreened populations, including women of Indian descent. This study explored experiences of cervical screening, alongside the acceptability of self‐collection, among women of Indian descent living in Victoria, Australia. We also aimed to articulate the informational needs to promote self‐collection among this population. Methods: Five focus group discussions with 39 women living in Victoria were conducted in English (n = 3) and Punjabi (n = 2). Transcripts were thematically analysed, as informed by the Theoretical Framework of Acceptability. Results: Women were motivated by the choice to self‐collect, perceiving the ability to maintain modesty and greater autonomy as key enablers. Healthcare practitioners were seen as central in supporting patient‐centred models of care. Perceived barriers to self‐collection included concerns around its accuracy and women's confidence in collecting their own sample. Widespread dissemination of culturally tailored promotion strategies communicating concepts such as 'privacy' and 'accuracy' were suggested by women to promote self‐collection. Conclusion: Self‐collection was highly acceptable among women of Indian descent, particularly when assured of its accuracy, and sociocultural norms and previous screening experiences are considered. This study highlights the huge potential that self‐collection can play in increasing equity in Australia's cervical screening programme. Patient or Public Contribution: Members of the public were involved in focus group discussions. Findings were summarised and disseminated via a poster. A bicultural worker was involved in all stages of the research. [ABSTRACT FROM AUTHOR]

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

Introduction: Patients living with obesity often experience weight stigma in healthcare settings, which has worrying consequences for their healthcare experiences. This cross‐sectional study aimed to: (1) provide an overview of stigmatising experiences in healthcare settings reported by adults living with varying classes of obesity, (2) identify associations among patient characteristics and perceived weight stigma and (3) investigate the association between perceived weight stigma and person‐centred care (PCC). Methods: Dutch adults living with obesity classes I (body mass index [BMI]: 30 to <35 kg/m2; n = 426), II (BMI: 35 to <40 kg/m2; n = 124) and III (BMI: ≥40 kg/m2; n = 40) completed measures of perceived weight stigma in healthcare settings and PCC. Descriptive, correlational and multivariate analyses were conducted. Results: Of patients living with classes I, II and III obesity, 41%, 59% and 80%, respectively reported experiences of weight stigma in healthcare settings. Younger age, greater obesity severity and the presence of chronic illnesses were associated with greater perceived weight stigma. Greater perceived weight stigma was associated with lower PCC. Conclusion: The results of this study emphasise the significant role of weight stigma in the healthcare experiences of patients living with obesity. Reducing weight stigma is expected to improve PCC and the overall quality of care for these patients. Minimising weight stigma will require efforts across various healthcare domains, including increasing awareness among healthcare professionals about sensitive communication in weight‐related discussions. Patient Contribution: Our sample consisted of patients living with obesity. Additionally, patients were involved in the pilot testing and refinement of the PCC instrument. [ABSTRACT FROM AUTHOR]

Introduction: People living with long‐term neurological conditions (LTNCs) have complex needs that demand intensive care coordination between sectors. This review aimed to establish if integrated care improves outcomes for people, and what characterises successful interventions. Methods: A systematic review of the literature was undertaken evaluating multisectoral integrated care interventions in people living with Parkinson's disease (PD), Multiple Sclerosis (MS) and Huntington's disease (HD). Strength of evidence was rated for the different outcomes. Results: A total of 15 articles were included, reporting on 2095 patients and caregivers, finding that integrated care can improve people's access to resources and reduce patients' depression. UK studies indicated improvements in patients' quality of life, although the international literature was inconclusive. Few programmes considered caregivers' outcomes, reporting no difference or even worsening in depression, burden and quality of life. Overall, the evidence showed a mismatch between people's needs and outcomes measured, with significant outcomes (e.g., self‐management, continuity of care, care experience) lacking. Successful programmes were characterised by expert knowledge, multisectoral care coordination, care continuity and a person‐centred approach. Conclusions: The impact of integrated care programmes on people living with LTNCs is limited and inconclusive. For a more person‐centred approach, future studies need to assess integrated care from a service‐user perspective. Patient and Public Contribution: Thirty people living with LTNCs were involved in this review, through defining research questions, validating the importance of the project, and increasing the researchers' understanding on what matters to service users. A patient and public involvement subgroup of representatives with lived experience on PD, MS and HD identified the need for more person‐centred integrated care, with specific concerns over care fragmentation, care duplication and care continuity. This was key to data analysis and formulating the characteristics of successful and unsuccessful integrated care programmes from the perspective of service users. The discrepancy between service users' needs and the outcomes assessed in the literature point to user‐driven research as the solution to address what matters to patients and caregivers. [ABSTRACT FROM AUTHOR]

Background: Dementia care in South Africa faces challenges including a paucity of published research, a prevalent medical model in healthcare, and inadequate caregiver training. Music is a meaningful psychosocial intervention in dementia care, yet its application is not always safe and effective. A training protocol was codesigned to enhance caregivers' delivery of person‐centred care through attuned, live singing. Objectives: This study explored the acceptability and caregivers' experiences of a person‐centred caregiver singing (PCCS) protocol in South Africa. Methods: A PCCS workshop was applied at seven aged care homes in Cape Town, South Africa. Forty‐one formal caregivers adhered to inclusion criteria and consented to attend one workshop on PCCS. Mixed methods data collection was obtained from questionnaires containing a Likert scale and written reflections. Quantitative data were analysed through nonparametric tests and narrative descriptions, and qualitative data through thematic content analysis. Findings were integrated deductively using seven components of acceptability. Results: Findings converged to show caregivers' positive experiences, highlighting observed improvements in residents' wellbeing, caregivers' capabilities, empathic connection, and person‐centred care beyond the one‐on‐one. Caregivers' limited song repertoire and residents' unpredictability hindered implementation, however, the skills acquired appeared useful and applicable. Conclusions: Integration of findings suggests the acceptability of PCCS as caregivers experienced PCCS as a helpful, easy‐to‐implement intervention that contributes to their delivery of person‐centred care. Further research focused on caregiver self‐efficacy, empathy, and caregivers' own personhood is needed as well as determining the most effective strategies to ensure maximum uptake and sustainability in the sector. Patient or Public Contribution: Formal caregivers participated in this study, both attending the training and implementing the singing protocol with residents in their care at their respective care homes. The people living with dementia residing at the care home were recipients of the singing protocol but not included as participants in the research. [ABSTRACT FROM AUTHOR]

Background: Inclusiveness, Support, Mutual Respect and Co‐Build are the four pillars of patient engagement according to the Strategy for Patient‐Oriented Research (SPOR). The aim of this manuscript is to describe the operationalization of these principles through the creation of a Patient Advisory Council (PAC) for the research study titled 'Re‐Purposing the Ordering of Routine laboratory Tests (RePORT)'. Methods: Researchers collaborated with the Alberta SPOR SUPPORT Unit (AbSPORU) Patient Engagement Team to create a diverse PAC. Recruitment was intentional and included multiple perspectives and experiences. PAC meetings were held monthly, and patient research partners received support to function as co‐chairs of the PAC. Patient research partners were offered training, support and tailored modalities of compensation to actively engage with the PAC. Regular member check‐ins occurred through reflexivity and a formal evaluation of PAC member engagement. Results: The PAC included between 9 and 11 patient research partners, principal investigator, research study coordinator, improvement scientist, resident physician and support members from the AbSPORU team. Twelve monthly PAC meetings were held during the first phase of the project. The PAC made course‐changing contributions to study design including study objectives, recruitment poster, interview guide and development of codes for thematic analysis. Patient research partners largely felt that their opinions were valued. Diversity in the PAC membership enhanced access to diverse patient participants. Furthermore, support for co‐chairs and patient research partner members enabled active engagement in research. In addition, a culture of mutual respect facilitated patient partner engagement, and co‐design approaches yielded rich research outputs. Conclusions: Collaboration between research teams and Patient Engagement Teams can promote effective patient engagement through a PAC. Deliberate and flexible strategies are needed to manage the PAC to create an ecology of Inclusiveness, Support, Mutual Respect, and Co‐Build for meaningful patient engagement. Patient or Public Contribution: Patient research partners were involved in the decision to write this manuscript and collaborated equitably in the conception and development of this manuscript, including providing critical feedback. Patient research partners were active members of the PAC and informed the research project design, participant recruitment strategies, data collection and analysis, and will be involved in the implementation and dissemination of results. They are currently involved in the co‐development of a patient engagement strategy using a Human‐Centered Design process. [ABSTRACT FROM AUTHOR]

Introduction: The assessment of using patient‐reported outcomes (PROs) within comprehensive care follow‐up programmes, specifically focused on health screening, remains largely unexplored. PROs were implemented in our late effects and comprehensive care programme after paediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. The programme focuses solely on screening of physical and mental health and on discussing PROs during the consultation. Methods: The primary method of this study was semistructured interviews to explore the perspective of both patients and healthcare providers' (HCP) on the use of PROs, which were thematically analyzed. Additionally, an explorative quantitative approach with patient‐reported experience measures (PREMS) was used, with a pretest–posttest design, to assess whether the use of PROs was accompanied by more patient‐centred care. Results: From the patient‐interviews (N = 15) four themes were extracted: use of PROs (1) help to discuss topics; (2) make the patients feel understood; (3) create a moment of self‐reflection; and (4) make consultations more efficient. Pre‐ and postimplementation analysis of PREMs (N = 40) did not show significant differences in terms of patient‐centeredness. Conclusion: Our results demonstrate the added value of integrating PROs for health screening purposes within the long‐term follow‐up programme after paediatric HSCT, as perceived by both patient and HCP. With the active use of PROs, patients are stimulated to consciously assess their health status. Patient Contribution: This study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were shared with all patients (including nonparticipants) during a patient conference day. [ABSTRACT FROM AUTHOR]

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

Background: Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom. Method: A systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Results: Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature. Conclusion: This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life. Patient and Public Contribution: An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic. [ABSTRACT FROM AUTHOR]

Background: Chronic conditions and multimorbidity, the presence of two or more chronic conditions, are increasingly common in older adults. Effective management of chronic conditions and multimorbidity in older adults requires a collaborative and person‐centred approach that considers the individual's goals, preferences and priorities. However, ensuring high‐quality personalised care for older adults with multimorbidity can be challenging due to the complexity of their care needs, limited time and a lack of patient preparation to discuss their personal goals and preferences with their healthcare team. Objective: To codesign a communication and goal‐setting tool, My Wellbeing Journal, to support personalised care planning for older adults with chronic conditions and multimorbidity. Design: We drew on an experience‐based codesign approach to develop My Wellbeing Journal. This article reports on the final end‐user feedback, which was collected via an online survey with older adults and their carers. Setting and Participants: Older adults with chronic conditions, multimorbidity and informal carers living in Australia. Personalised care planning was considered in the context of primary care. Results: A total of 88 participants completed the online survey. The survey focused on participants' feedback on the tool in terms of effectiveness, efficiency, satisfaction and errors encountered. This feedback resulted in modifications to My Wellbeing Journal, which can be used during clinical encounters to facilitate communication, goal setting and progress tracking. Discussion and Conclusions: Clinicians and carers can use the tool to guide discussions with older adults about their care planning and help them set realistic goals that are meaningful to them. The findings of this study could be used to inform the development of recommendations for healthcare providers to implement person‐centred, goal‐oriented care for older adults with chronic conditions and multimorbidity. Patient or Public Contribution: Older adults living with chronic conditions and multimorbidity and their carers have contributed to the development of a tool that has the potential to significantly enhance the experience of personalised care planning. Their direct involvement as collaborators has ensured that the tool is optimised to meet the standards of effectiveness and usability. [ABSTRACT FROM AUTHOR]

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

Aims: To increase our understanding of which factors contribute to long‐term benzodiazepine receptor agonist (BZRA) use for insomnia in primary care, from a patients', general practitioners' (GP) and pharmacists' perspective. Design: Qualitative research following a grounded theory approach. Setting: Primary care in Belgium. Participants: Twenty‐four participants were interviewed, including nine patients, six GPs and nine pharmacists. Measurements: In‐depth, semistructured interviews with iterative cycles of data collection and analysis. Transcripts were analysed using the framework method. Thematic findings were interpreted in the context of the Theoretical Domains Framework. Findings: A reflexive relation was identified between views about hypnotic use at the level of society, healthcare and patients. Behaviour change appeared to depend strongly on context and social influence, including a need for supporting relationships by all stakeholders. Six key messages captured factors that contribute to long‐term BZRA use for insomnia in primary care: societal beliefs as a game changer, the opportunity of nonpharmacological treatment, collaborative primary care, patient‐centred goals, informed consent and self‐management. Conclusions: Long‐term BZRA use for insomnia is a complex and multifaceted public health problem that is not adequately addressed in primary care at this time. Although primary care professionals in this study found discontinuation of long‐term BZRA use relevant to the patient's health, many organisational and personal barriers were reported. Moreover, the current social and healthcare context is not empowering patients and professionals to reduce long‐term BZRA use for insomnia. Specifically, for primary care, all stakeholders reported the need for a nonmedicalised relationship between the patient and GP to lower prescribing rates. Patient or Public Contribution: The Flemish Patient Platform, a patient representative organisation, assisted with recruitment by launching a call for participants in their newsletter and volunteered to disseminate the results. The call for recruitment was also published online in social media groups regarding insomnia and via posters in public pharmacies. Patients or public were not involved in designing or conducting the interview study. [ABSTRACT FROM AUTHOR]

Introduction: People with poststroke acquired brain injury (ABI) face a complex and often troubled identity reconstruction journey. The literature is rich with studies related to the psychological and neuropsychological components involved in rehabilitation, but it is lacking with respect to the investigation of the existential dimensions and the challenges associated with finding new senses and meanings for one's identity and future perspectives, body and interpersonal relationships. Methods: The aim of this study is to investigate the narrative processes of identity reconstruction after brain damage. Through a qualitative approach, 30 autobiographical narratives about self, body and the relationships with others were collected and analyzed. Semistructured interviews were used for the data collection. Narrative and positioning analysis were applied. Results: Four main positionings emerged: sanctioning a radical break with one's previous life; assuming a sense of salvation and compulsory as well as irreversible adaptation to the limitations associated with one's condition; feeling different and disabled; and considering new possibilities and active constructions of self‐being in relationship with others. These results underline the narrative processes of construction of the injury and the identity and delineate possible resources and instruments to improve the clinical practice for health practitioners. They are also valuable for other professionals who deal with neurological services and rehabilitation, such as psychological counselling and support for persons who have experienced ABI and their families. Patient or Public Contribution: This work resulted from a close collaboration between two universities and a hospital neurological rehabilitation department in the Veneto Region (Northern Italy). Three associations of people with stroke and their families living in the same area contributed to designing the research on the basis of the needs expressed by their members with the aim to identify strategies and devices to be implemented in the public service to improve the care pathway. They also participated in the interpretation of the data. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to develop a patient‐centred handbook that integrates information on lifestyle modifications and psychological support strategies for individuals with mild cognitive impairment (MCI). This article provides a comprehensive record of the development process. Methods: We adopted a participatory research model for the methodology, which comprised five phases and involved an interdisciplinary team specializing in dementia and health literacy. Data were initially collected via interviews conducted among patients with MCI (n = 5) and their families (n = 5). Given the study's preliminary nature, depth and richness of the qualitative data were the key concerns for determining the sample size, rather than broad generalizability. We ensured the inclusion of diverse experiences and perspectives by facilitating the creation of patient questions (PQs) that merged scientific evidence with patient perspectives. To enhance the handbook's accessibility and utility, we continuously evaluated the same using patient interviews, health literacy tool assessments and team discussions. This comprehensive approach harmonized scientific knowledge and patient experience, leading to the development of a personalized MCI management guide. Results: The handbook comprises nine domains, encompassing 38 selected PQs: MCI, lifestyle, lifestyle‐related diseases, exercise, nutrition, social participation, cognitive training, psychological care and family support. The health literacy handbook was evaluated based on Clear Communication Index scores. The results revealed that 73.7% of the PQs were deemed difficult prerevision, whereas only 5.3% remained challenging postrevision. The formative evaluation underscored the need for more detailed explanations prerevision, whereas postrevision comments focused primarily on editorial suggestions. Conclusion: The inclusion of patients' perspectives right from the outset ensured that the handbook met their specific needs. The final version, which reflects all stakeholders' inputs, is now slated for imminent publication. Patient or Public Contribution: Patients and the public participated extensively throughout the project, from initial interviews to material evaluation and refinement. [ABSTRACT FROM AUTHOR]

Abstract Introduction Patient‐centered care (PCC) has been declared as a desirable goal for health care in Latin American countries, but a coherent definition of what exactly PCC entails for clinical practice is missing. This article's aim was to identify how PCC is conceptualized in Latin American countries. Methods Scientific databases (MEDLINE, EMBASE, PsycINFO, CINAHL, Scielo, Scopus, Web of Science) and webpages of the ministries of health were searched, and experts were contacted for suggestions of literature. References were included if they contained one of a range of a priori defined keywords related to PCC in the title, were published between 2006 and 2021, and were carried out in or concerned Latin America. Definitions of PCC were extracted from the included articles and analyzed using deductive and inductive coding. Deductive coding was based on the integrative model of patient‐centeredness, which unites the definitions of PCC in the international literature (mainly North America and Europe) and proposes 16 dimensions describing PCC. Results Thirty‐two articles were included in the analysis and about half of them were from Brazil. Numerous similarities were found between the integrative model of patient‐centeredness and the definitions of PCC given in the selected literature. The dimensions of the integrative model of patient‐centeredness that were least and most prominent in the literature were physical support and patient information, respectively. A differentiation between PCC and family‐centered care (FCC) was observed. Definitions of PCC and FCC as well as their cited references were diverse. Conclusion A considerable overlap between the conceptualization of PCC in Latin America and the integrative model of patient‐centeredness has been identified. However, there are substantial differences between countries in Latin America regarding the emphasis of research on PCC versus FCC and diverse conceptualizations of PCC and FCC exist. Patient Contribution This scoping review takes the patient's perspective based on the integrative model of patient‐centeredness. Due to the study being a review, no patients, neither caregivers, nor members of the public, were involved.

Introduction: Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a connection to the VAD system is challenging. This study analyses the causes of this 'point of access' barrier. Methods: We conducted semi‐structured qualitative interviews with family caregivers and a person seeking VAD, with participants recruited via social media and patient interest groups. Data were thematically analysed. We also undertook documentary analysis (content and thematic) of publicly available reports from the oversight body, the Voluntary Assisted Dying Review Board. Results: We interviewed 32 family caregivers and one patient across 28 interviews and analysed six Board reports. Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified: (1) not knowing VAD exists as a legal option; (2) not recognising a person is potentially eligible for VAD; (3) not knowing next steps or not being able to achieve them in practice; and (4) challenges with patients being required to raise the topic of VAD because doctors are legally prohibited from doing so. Conclusion: Legal, policy and practice changes are needed to facilitate patients being able to find a connection to the VAD system. The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system. Community awareness initiatives are needed to enhance awareness of VAD, especially given it is relatively new in Victoria. Patient or Public Contribution: Families and a patient were the focus of this research and interviews with them about the experience of seeking VAD were the primary source of data analysed. This article includes their solutions to address the identified point of access barriers. Patient interest groups also supported the recruitment of participants. [ABSTRACT FROM AUTHOR]

Background: More than 90% of deaf children are born to hearing families who know little about deafness. Benefits from hearing screening at birth are often lost, as families find little information about pathways for deaf children but are key to ensuring deaf children receive relevant language and communication support. Systems surrounding deaf children and family members are crucial for children's health and social development. Experiences of hearing parents raising deaf children and understanding factors that influence families' experience of navigating pathways for deaf children through health and education services are currently underreported. Methods: An exploratory study was conducted in Wales, UK. Twenty participants were interviewed, including 10 hearing parents of deaf children and 10 people who work with deaf children using semistructured interviews. Bronfenbrenner's ecological systems theory was used as a lens to explore the micro‐, meso‐, exo‐, macro‐ and chronosystems that surround children and families. This study explores potential supports and barriers in those systems. Findings: Findings are reported under two broad headings: enablers and barriers. Under enablers, it was found that provision of resources, supporting people and knowledge were key factors. Under barriers, a lack of knowledge, lack of provision and battling services and attitudes were key issues that need addressing. Conclusion: Hearing parents of deaf children in Wales, UK reported experiencing a range of enablers and barriers that impact upon their experiences of raising a deaf child. Further provision is needed by policymakers and governments to recognise support needs to improve the outcomes for deaf children. Patient or Public Contribution: This project was developed from initial discussions with the stakeholder reference group and progressed with the group's deaf panel and hearing parents with deaf children. The project's steering group was involved in study design, recruitment and continuous feedback on all stages of the research process. [ABSTRACT FROM AUTHOR]

Background and Objective: To improve quality, child and adolescent mental health services (CAMHS) are expected to quantify families' views on healthcare with user satisfaction measures. As little is known about what influences satisfaction in CAMHS, this study aimed to examine predictors of adolescents' and parents' user satisfaction. Methods: Data from 231 adolescents and 495 parents in treatment at an outpatient clinic who returned a user satisfaction measure, the Experience of Service Questionnaire (ESQ), was analyzed. Registry data on background, clinical and service characteristics were predictors for the ESQ factors general satisfaction, satisfaction with care and satisfaction with environment. Results: In regression models, satisfaction with care for adolescents (r2 =.12) was significant and was predicted by low parent‐self‐reported mental health burden and low clinician‐rated overall symptom burden at intake. For parents, regression models for general satisfaction (r2 =.07), satisfaction with care (r2 =.06) and satisfaction with environment (r2 =.08) were significant. Parents general satisfaction was predicted by higher levels of hyperactivity, less family stress and longer travelling distances to the service. Satisfaction with care for parents was predicted by higher levels of hyperactivity at intake and longer travelling distances. Satisfaction with environment for parents was more likely if the adolescents was a boy, with low levels of family stress and longer travelling distances. Conclusion: Predictors for adolescent and parent user satisfaction in CAMHS differ. Hence, to improve quality CAMHS should enhance focus on collaborative practice with parents, and person‐centred care for adolescents with moderate to severe mental health illness. Patient or Public Contribution: Representatives from the hospitals' youth panel and the non‐governmental organization called The Change Factory have been consulted regarding study design and results. [ABSTRACT FROM AUTHOR]

Background: People who use drugs (PWUD) frequently delay or avoid obtaining medical care in traditional healthcare settings. Through a randomized controlled trial, we investigated facilitated telemedicine for hepatitis C virus (HCV) integrated into opioid treatment programmes. We sought to understand the experiences and meanings of facilitated telemedicine and an HCV cure among PWUD. Methods: We utilized purposive sampling to interview 25 participants, 6–40 months after achieving an HCV cure. We interpreted and explicated common meanings of participants' experiences of an HCV cure obtained through facilitated telemedicine. Results: Participants embraced facilitated telemedicine integrated into opioid treatment programmes as patient‐centred care delivered in 'safe spaces' (Theme 1). Participants elucidated their experiences of substance use and HCV while committing to treatment for both entities. Facilitated telemedicine integrated into opioid treatment programmes enabled participants to avoid stigma encountered in conventional healthcare settings (Theme 2). Participants conveyed facing negative perceptions of HCV and substance use disorder. Improved self‐awareness, acquired through HCV and substance use treatment, enabled participants to develop strategies to address shame and stigma (Theme 3). An HCV cure, considered by PWUD as a victory over a lethal infectious disease, promotes self‐confidence, enabling participants to improve their health and lives (Theme 4). Conclusions: Integrating facilitated telemedicine into opioid treatment programmes addresses several healthcare barriers for PWUD. Similarly, obtaining an HCV cure increases their self‐confidence, permissive to positive lifestyle changes and mitigating the negative consequences of substance use. Patient and Public Contribution: In this study of patient involvement, we interviewed patient‐participants to understand the meaning of an HCV cure through facilitated telemedicine. Participants from a facilitated telemedicine pilot study provided essential input on the design and outcomes of a randomized controlled trial. Pilot study participants endorsed facilitated telemedicine in a testimonial video. They attended site initiation meetings to guide trial implementation. A Patient Advisory Committee (PAC) ensured that patient participants were active members of the research team. The PAC represented patients' voices through feedback on study procedures. A Sustainability Committee supported public involvement in the research process, including educational opportunities, feedback on implementation, and future sustainability considerations. [ABSTRACT FROM AUTHOR]