BACKGROUND: 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.
METHODS: 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.
CONCLUSIONS: 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.
CONCLUSIONS: 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.
UNASSIGNED: 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.
BACKGROUND: Not applicable.

UNASSIGNED: Community Advisory Boards (CABs) play an important role in developing and delivering patient-centered care. However, the impact of participation on CAB members has not been well studied, particularly on the global scale. In 2022, the Hepatitis B Foundation (HBF) convened the first global hepatitis B and hepatitis delta CAB with 23 members from 17 countries, representing six out of the seven World Health Organization (WHO) regions, and countries with the largest hepatitis B and hepatitis delta disease burden.
UNASSIGNED: To reflect on the process of assembling an effective and motivated CAB and assess the impact on CAB participants, three virtual focus group sessions were held with 16 participants in July and August 2023. Sessions were recorded and transcribed. Questions focused on motivations for joining the CAB, membership experiences, and lessons learned. Grounded theory analysis was used to generate hypotheses about reasons for CAB members\' participation, as well as challenges and suggestions. Qualitative analysis using inductive reasoning identified key themes within responses. Transcripts were independently analyzed by a primary and secondary coder.
UNASSIGNED: Motivations for joining the CAB included participants\' desire to advocate for people living with hepatitis B and hepatitis delta, and other altruistic factors. Participants reflected that through CAB membership, they gained networking and advocacy opportunities and enhanced their hepatitis B- and hepatitis delta-related knowledge. Challenges participants experienced were related to time, physical limitations, and stigma. Finally, participants discussed their limited direct engagement with drug developers and proposed ways the CAB can increase interactions with stakeholders going forward.
UNASSIGNED: Based on participants\' assessments, establishing a global CAB for stigmatized infectious diseases is worth the effort. Regular internal review of community advisory boards\' structure and performance is critical to ensure the CAB is fulfilling its mission.

OBJECTIVE: Community participation is believed to be positively associated with recovery experiences and quality of life for people with serious mental illnesses (PSMIs). However, the underlying mechanism remains unclear. This study examined the mediating effect of self-stigma on the relationship between community participation and personal recovery experiences and quality of life among PSMIs.
METHODS: Structural equation modeling and mediation analyses were conducted based on a community sample of 315 PSMIs in Beijing, China, who were surveyed using the Community Participation Domains Measure, Internalized Stigma of Mental Illness, Recovery Assessment Scale, Quality of Life Scale, and a demographic questionnaire. Most were in their middle age. About half were married, and half were females. Most participants got disability certificates.
RESULTS: The results indicate that community participation is directly associated with personal recovery of PSMIs (P < 0.01) and indirectly associated with personal recovery through the mediation of self-stigma (P < 0.01). Additionally, community participation does not have a direct effect on the quality of life of PSMIs but shows an indirect effect through the mediation of self-stigma (P < 0.01). The findings suggest that self-stigma mediates the relationship between community participation and both the subjective perception of recovery and quality of life.
CONCLUSIONS: The findings indicate that community participation for PSMIs should be enhanced. Tailored individual intervention services should be implemented to boost positive self-awareness and reduce self-stigma through active engagement in activities. Such participation has the potential to improve subjective experiences of recovery and overall quality of life.

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Effective community entry processes influence community participation and acceptance of public health interventions. Though there is a growing body of literature on the importance of community partnerships, there is a lack of pragmatic and practical documentation of the experiences involved in the community entry process as it relates to culturally sensitive topics such as child marriage which can help to support researchers working in this field. This article highlights key themes related to knowledge of the community, effective communication, cultural sensitivity, coproduction and giving feedback which help to build trust between the community members and the research team. Institutional representation, not managing expectations, and lack of clarity, along with personal opinions of community gatekeepers can create challenges for the fostering of trustworthy relationships with the community. These realities must be actively addressed right at the onset of the process between the research team and community stakeholders. Researchers can develop trust, form connections and engage different communities by working with local groups and leaders, using culturally appropriate methods, and addressing community concerns. Future projects working with communities on child marriage in Nigeria and other countries would benefit from the reflections presented in this paper.

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BACKGROUND: A Learning Health Care Community (LHCC) is a framework to enhance health care through mutual accountability between the health care system and the community. LHCC components include infrastructure for health-related data capture, care improvement targets, a supportive policy environment, and community engagement. The LHCC involves health care providers, researchers, decision-makers, and community members who work to identify health care needs and address them with evidence-based solutions. The objective of this study was to summarize the barriers and enablers to building an LHCC in rural areas.
METHODS: A systematic review was conducted by searching electronic databases. Eligibility criteria was determined by the research team. Published literature on LHCCs in rural areas was systematically collected and organized. Screening was completed independently by two authors. Detailed information about rural health care, activities, and barriers and enablers to building an LHCC in rural areas was extracted. Qualitative analysis was used to identify core themes.
RESULTS: Among 8169 identified articles, 25 were eligible. LHCCs aimed to increase collaboration and co-learning between community members and health care providers, integrate community feedback in health care services, and to share information. Main barriers included obtaining adequate funding and participant recruitment. Enablers included meaningful engagement of stakeholders and stakeholder collaboration.
CONCLUSIONS: The LHCC is built on a foundation of meaningful use of health data and empowers health care practitioners and community members in informed decision-making. By reducing the gap between knowledge generation and its application to practice, the LHCC has the potential to transform health care delivery in rural areas.

Citizen science can be a powerful approach to foster the successful implementation of technological innovations in health, care or well-being. Involving experience experts as co-researchers or co-designers of technological innovations facilitates mutual learning, community building, and empowerment. By utilizing the expert knowledge of the intended users, innovations have a better chance to get adopted and solve complex health-related problems. As citizen science is still a relatively new practice for health and well-being, little is known about effective methods and guidelines for successful collaboration. This scoping review aims to provide insight in (1) the levels of citizen involvement in current research on technological innovations for health, care or well-being, (2) the used participatory methodologies, and (3) lesson\'s learned by the researchers.A scoping review was conducted and reported in accordance with the PRISMA-ScR guidelines. The search was performed in SCOPUS in January 2021 and included peer-reviewed journal and conference papers published between 2016 and 2020. The final selection (N = 83) was limited to empirical studies that had a clear focus on technological innovations for health, care or well-being and involved citizens at the level of collaboration or higher. Our results show a growing interest in citizens science as an inclusive research approach. Citizens are predominantly involved in the design phase of innovations and less in the preparation, data-analyses or reporting phase. Eight records had citizens in the lead in one of the research phases.Researcher use different terms to describe their methodological approach including participatory design, co-design, community based participatory research, co-creation, public and patient involvement, partcipatory action research, user-centred design and citizen science. Our selection of cases shows that succesful citizen science projects develop a structural and longitudinal partnership with their collaborators, use a situated and adaptive research approach, and have researchers that are willing to abandon traditional power dynamics and engage in a mutual learning experience.

BACKGROUND: Workers tasked with specific responsibilities around patient and public involvement (PPI) are now routinely part of the organizational landscape for applied health research in the United Kingdom. Even as the National Institute for Health and Care Research (NIHR) has had a pioneering role in developing a robust PPI infrastructure for publicly funded health research in the United Kingdom, considerable barriers remain to embedding substantive and sustainable public input in the design and delivery of research. Notably, researchers and clinicians report a tension between funders\' orientation towards deliverables and the resources and labour required to embed public involvement in research. These and other tensions require further investigation.
METHODS: This was a qualitative study with participatory elements. Using purposive and snowball sampling and attending to regional and institutional diversity, we conducted 21 semi-structured interviews with individuals holding NIHR-funded formal PPI roles across England. Interviews were analysed through reflexive thematic analysis with coding and framing presented and adjusted through two workshops with study participants.
RESULTS: We generated five overarching themes which signal a growing tension between expectations put on staff in PPI roles and the structural limitations of these roles: (i) the instability of support; (ii) the production of invisible labour; (iii) PPI work as more than a job; (iv) accountability without control; and (v) delivering change without changing.
CONCLUSIONS: The NIHR PPI workforce has enabled considerable progress in embedding patient and public input in research activities. However, the role has led not to a resolution of the tension between performance management priorities and the labour of PPI, but rather to its displacement and - potentially - its intensification. We suggest that the expectation to \"deliver\" PPI hinges on a paradoxical demand to deliver a transformational intervention that is fundamentally divorced from any labour of transformation. We conclude that ongoing efforts to transform health research ecologies so as to better respond to the needs of patients will need to grapple with the force and consequences of this paradoxical demand.