BACKGROUND: Recent reviews have highlighted the need for participatory research to design and evaluate inclusive, community-based interventions that address the diverse needs of people with lived experience of psychosis, within and beyond the health sector. The SUCCEED Africa consortium aims to co-produce a 6-year programme of research across four countries in West (Sierra Leone, Nigeria) and Southeast Africa (Zimbabwe and Malawi). This protocol describes the pilot study in which SUCCEED\'s intervention, research tools and processes will be tested on a small scale in each country in preparation for future evaluation research.
METHODS: The SUCCEED intervention comprises peer support, case management and livelihood activities for people with lived experience of psychosis. The pilot uses a before-and-after study design investigating change in subjective quality of life in adults diagnosed with a primary psychotic disorder or another mental disorder with psychotic symptoms who are offered the SUCCEED intervention over a 4-month period. Nested within this study are the following: a baseline assessment of the feasibility, acceptability and face validity of the selected measurement tool and validity of proxy versus self-completion; and a multi-method process evaluation examining key process indicators and implementation, service and client-level outcomes. Methods include the following: baseline cognitive interviews; semi-structed observation and routine monitoring and evaluation of service delivery; endline interviews and focus group discussions; and a comparison of provider competencies at endline. At each of the four pilot sites, participants will include the following: ten people with lived experience of psychosis, recruited from either health services or community settings using purposive sampling to maximise variation; up to ten adult family members (one per participant with lived experience) involved in their care; the peer support worker, community support worker and supervisor responsible for delivering the intervention; and the data collectors. Recruitment will take place in July and August 2023.
CONCLUSIONS: To the best of our knowledge, this will be the first study of a community-based intervention incorporating lay-delivered case management, formal peer support and livelihoods activities for people with lived experience of psychosis in sub-Saharan Africa. Findings will be relevant not only to SUCCEED but also to others interested in promoting rights-based approaches to community mental health in low-resource settings.
BACKGROUND: US National Library of Medicine (ClinicalTrials.gov), Protocol reference ID 28346. Initially registered retrospectively July 20/2023: In review.

UNASSIGNED: In 1996, a multicomponent community-based alcohol prevention program in Responsible Beverage Service (RBS) targeting licensed premises was developed by STAD (Stockholm Prevents Alcohol and Drug Problems) and implemented in Stockholm, Sweden. The program consists of community mobilization and collaboration, training, and enforcement. Early evaluations have shown a significant increase in the refusal rates of alcohol service to intoxicated patrons, from 5% in 1996 to 70% in 2001, and a 29% decrease in the frequency of police-reported violence. A cost-effectiveness analysis showed a cost-saving ratio of 1:39. The program was institutionalized by a collaborative steering group consisting of community stakeholders. This study aimed to evaluate the long-term effects over 20 years of the RBS program. The indicator chosen was the rate of alcohol overserving to obviously intoxicated patrons at licensed premises in Stockholm.
UNASSIGNED: A 20-year follow-up study was conducted using the same procedure as the baseline and previous follow-ups. Professional male actors (pseudopatrons) were trained by an expert panel to enact a standardized scene of obvious alcohol-intoxication. In 2016, 146 licensed premises located in the central part of Stockholm were randomly selected and visited. A review of program implementation from its initiation 1996 was conducted, examining critical events, including commitment from key actors in the community, training of bar staff, and enforcement.
UNASSIGNED: At the 20-year follow-up, pseudopatrons were refused alcohol service in 76.7% of the attempts, which was at the same level (70%) as in the follow-up in 2001, thus indicating sustained effects of the RBS program. Compared with previous follow-ups, serving staff used more active intervention techniques in 2016 toward intoxicated patrons, such as refusing to take the order (56.9% in 2016 vs. 42.0% in 2001), and fewer passive techniques, such as ignoring patrons (6.5% in 2016 vs. 15.5% in 1999) or contacting a colleague (4.1% in 2016 vs. 25% in 2001).
UNASSIGNED: The sustained long-term effects of the RBS program are unique and can be explained by the high level of institutionalization of the multicomponent program, which is still ongoing in Stockholm. These findings can inform the dissemination of the program to other countries and settings.

BACKGROUND: Patient and public involvement (PPI) in research is widely acknowledged as essential to achieving successful and impactful research. Despite this acknowledgement, there are limited reports on how to approach and apply meaningful PPI throughout the research cycle and how to address challenges for researchers such as doctoral students, particularly when undertaking research on sensitive topics. This paper provides insights and examples for researchers new to PPI, on the impact of active PPI and recommendations for building and developing a PPI group in a paediatric focused doctoral research study with bereaved parents and carers.
METHODS: PPI was informed by the research cycle. The GRIPP2 short-form checklist was used to report PPI. The research was funded by the National Institute for Health and Care Research.
RESULTS: PPI enhanced the research through input into the study design, recruitment, co-design of the study website and branding; and ethics amendments to increase participation in response to the COVID-19 pandemic. The literature review was extended to incorporate a PPI consultation phase and members contributed to data analysis. A flexible approach enabled involvement to develop iteratively throughout the research study, resulting in changes being made to enhance the study design and outcomes.
CONCLUSIONS: This paper contributes to the limited knowledge base on embedding PPI into a doctoral research study and within the paediatric setting specifically working in partnership with bereaved parents and carers. Employing an adaptive approach to meet individual PPI needs, building a trusting and respectful partnership, creating shared ownership and investment in the research, are essential components to successful PPI.
Involving patients and the public in research provides the opportunity to develop meaningful outcomes that are relevant to the population being studied. Despite the benefits of patient and public involvement in research, guidelines that support researchers in doing so, lack detail on how to do this effectively. This is particularly important for those new to research such as doctoral students, who have so much to learn in developing a research study. Different approaches and applications to involvement are also likely to be needed depending on the population being studied. There are limited published papers on examples of how doctoral students have engaged and involved patients and the public in the context of their studies, and specifically within the children’s setting, working in partnership with bereaved parents and carers, or those with seriously ill children. This paper offers examples and insights for those new to research in how to involve patients and the public throughout the research cycle. Specifically undertaking research in a sensitive subject of a particular childhood cancer which has poor outcomes and how to incorporate and evaluate successful patient and public involvement in their research activities such as study design and analysis of the results. Parent and carer reflections on their experiences of being involved are also reported and researcher recommendations for approaching and working with a patient and public group are described.

Background: Age-related macular degeneration (AMD) is the most common cause of incurable visual impairment and impacts daily life. There are benefits of physical activity for people who are affected with AMD; however, living with AMD is associated with lower levels of physical activity and social isolation. The aim of this study was to explore how older people with AMD in Sweden experienced participation in a 6-month empowerment-based physical activity intervention and how it influenced their physical abilities. Methods: The participants were nine individuals with AMD aged 70-87 years. The intervention comprised physical and social activities in a group twice a week and individual health coaching on three occasions. The study was based on an exploratory qualitative case study design. Results: The findings showed two themes: created meaningfulness in life and creative and playful ways to develop body movements. The findings also showed improved muscle strength after the intervention. Conclusions: The findings showed that participants had increased social connectedness, improved physical self-efficacy and physical ability, as well as improved muscle strength. The empowerment process of the intervention was appreciated by the participants and challenged them to participate in physical activity offered by the municipality for older individuals.

UNASSIGNED: The increase in adolescents reporting mental health problems presents a major public health challenge. The complex association between mental health and social capital motivates further investigation of social capital as a crucial aspect in shaping adolescents\' help-seeking knowledge, attitudes, and behaviours.
UNASSIGNED: This protocol presents a project that aims to investigate social capital in relation to help-seeking and mental health in close collaboration with adolescents and key stakeholders in the school setting, in the southern part of Sweden.
UNASSIGNED: A mixed-method design with three interconnected work packages (WP) will be undertaken with an emphasis on co-production where adolescents are involved throughout the process. WP1 is a development and validation of two questionnaire instruments for assessing social capital and help-seeking in adolescence. WP2 is a longitudinal quantitative study involving 1,500 adolescents from two regions representing rural and suburban/urban settings. Adolescents aged 15 will be asked to complete questionnaires concerning social capital, mental health, and help-seeking in a baseline and one-year follow-up, allowing for investigation of the role of social capital for help-seeking. WP3 is designed to elucidate experiences and knowledge of adolescents and key stakeholders via collaborative World Café workshops. These will be held along the project to evolve the generated knowledge and maximize it\'s applicability during and after the project is finalized.
UNASSIGNED: The results are expected to further the understanding of the relationship between adolescents\' social capital, mental health, and help-seeking, to contribute to a deeper understanding of the mechanisms behind the paradoxical help-seeking patterns among adolescents today and to narrow the gap between research and practice to produce sustainable and efficient strategies, which may facilitate help-seeking and improve the mental health of adolescents within existing organizational structures.

BACKGROUND: When the 21 Swedish county councils decided to collaborate in the creation of a national system for knowledge-based management, patient participation was mandatory. Patient and next-of-kin representatives (PR) co-produced person-centred and cohesive clinical pathways together with healthcare professionals (HPR). Research on co-production in healthcare at the national level is scarce. The aim of this study is to explore experiences of patient participation from the perspectives of both PRs and HPRs when co-producing clinical pathways within the Swedish nationwide healthcare system for knowledge-based management.
METHODS: A qualitative study was conducted. A strategic sample of nine PRs and eight HPRs were interviewed individually between August 2022 and January 2023 using a semi-structured interview guide. We analysed data using an inductive content analysis.
RESULTS: Three main categories were identified: (1) Finding appropriate patient representativeness; (2) Working methods that facilitate a patient perspective; and (3) Influence of the patient perspective in the clinical pathways.
CONCLUSIONS: The study demonstrates the importance of patient and next-of-kin participation in the construction of clinical pathways at the national level. The results provide a platform for further research on patient participation on the national level and add to studies on if and how patient participation on this level has an impact on how the clinical pathways are put into practice at the micro level, and the support provided at the meso level. The study contributes to the growing body of literature studying patient participation and co-production.
BACKGROUND: Region Örebro County ID 276,940. An advisory opinion was obtained from the Swedish Ethical Review Authority (2021-05899-01).
Co-production of guidelines and clinical pathways with patients and next-of-kin representatives is increasingly emphasised at different levels in healthcare internationally. However, little has been documented and explored regarding experiences of patient participation on a national level. Patient participation was mandatory when a national system for knowledge-based management of healthcare was launched in Sweden. Knowledge management of healthcare is the collection of methods relating to creating, sharing, using and managing the knowledge and information of an organization. All 21 of Sweden’s regions and the government have supported this collaborative system consisting of multi-professional national working groups with patient representatives. The groups develop clinical pathways aiming to enhance a coordinated, equal and effective healthcare. The person-centred clinical pathways describe assessment, diagnosis, planning and evaluation for a condition, for example for patients with a hip fracture, or congestive heart failure. The study focuses on experiences of patient participation in the national working groups. We interviewed nine patient representatives and eight healthcare professional representatives from eleven different groups. Our findings show the importance of identifying and finding appropriate patient representativeness, having working methods that facilitate a patient perspective and the patient perspective influencing the clinical pathways. This study on patient participation in the construction of clinical pathways at the national level contributes to the growing body of literature on co-production of knowledge support. The findings highlight important learning for the continued development of meaningful patient participation on the national level. It also raises curiosity on how the national approach with co-production influences local levels where the guidelines are used.

UNASSIGNED: Cervical cancer is one of the most preventable cancers yet remains a disease of inequity for people with intellectual disability, in part due to low screening rates. The ScreenEQUAL project will use an integrated knowledge translation (iKT) model to co-produce and evaluate accessible cervical screening resources with and for this group.
UNASSIGNED: Stage 1 will qualitatively explore facilitators and barriers to screening participation for people with intellectual disability, families and support people, healthcare providers and disability sector stakeholders (n ≈ 20 in each group). An accessible multimodal screening resource, accompanying supporting materials for families and support people, and trauma-informed healthcare provider training materials will then be co-produced through a series of workshops. Stage 2 will recruit people with intellectual disability aged 25 to 74 who are due or overdue for screening into a single-arm trial (n = 48). Trained support people will provide them with the co-produced resource in accessible workshops (intervention) and support them in completing pre-post questions to assess informed decision-making. A subset will participate in qualitative post-intervention interviews including optional body-mapping (n ≈ 20). Screening uptake in the 9-months following the intervention will be measured through data linkage. Family members and support people (n = 48) and healthcare providers (n = 433) will be recruited into single-arm sub-studies. Over a 4-month period they will, respectively, receive the accompanying supporting materials, and the trauma-informed training materials. Both groups will complete pre-post online surveys. A subset of each group (n ≈ 20) will be invited to participate in post-intervention semi-structured interviews.
UNASSIGNED: Our primary outcome is a change in informed decision-making by people with intellectual disability across the domains of knowledge, attitudes, and screening intention. Secondary outcomes include: (i) uptake of screening in the 9-months following the intervention workshops, (ii) changes in health literacy, attitudes and self-efficacy of family members and support people, and (iii) changes in knowledge, attitudes, self-efficacy and preparedness of screening providers. Each participant group will evaluate acceptability, feasibility and usability of the resources.
UNASSIGNED: If found to be effective and acceptable, the co-produced cervical screening resources and training materials will be made freely available through the ScreenEQUAL website to support national, and potentially international, scale-up.

Telerehabilitation (TR) shows promise as a method of remote service delivery, yet there is little guidance to inform implementation in the context of the National Health Service (NHS) in England. This paper presents the protocol for a realist synthesis study aiming to investigate how TR can be implemented to support the provision of high-quality, equitable community-based stroke rehabilitation, and under what conditions. Using a realist approach, we will synthesise information from (1) an evidence review, (2) qualitative interviews with clinicians (n ≤ 30), and patient-family carer dyads (n ≤ 60) from three purposively selected community stroke rehabilitation services in England. Working groups including rehabilitation professionals, service-users and policy-makers will co-develop actionable recommendations. Insights from the review and the interviews will be synthesised to test and refine programme theories that explain how TR works and for whom in clinical practice, and draw key messages for service implementation. This protocol highlights the need to improve our understanding of TR implementation in the context of multidisciplinary, community-based stroke service provision. We suggest the use of a realist methodology and co-production to inform evidence-based recommendations that consider the needs and priorities of clinicians and people affected by stroke.

BACKGROUND: Delirium is a common symptom of acute illness which is potentially avoidable with early recognition and intervention. Despite being a growing concern globally, delirium remains underdiagnosed and poorly reported, with limited understanding of effective delirium education for undergraduate health profession students. Digital resources could be an effective approach to improving professional knowledge of delirium, but studies utilising these with more than one profession are limited, and no evidence-based, interdisciplinary, digital delirium education resources are reported. This study aims to co-design and evaluate a digital resource for undergraduate health profession students across the island of Ireland to improve their ability to prevent, recognise, and manage delirium alongside interdisciplinary colleagues.
METHODS: Utilising a logic model, three workstreams have been identified. Workstream 1 will comprise three phases: (1) a systematic review identifying the format, methods, and content of existing digital delirium education interventions for health profession students, and their effect on knowledge, self-efficacy, and behavioural change; (2) focus groups with health profession students to determine awareness and experiences of delirium care; and (3) a Delphi survey informed by findings from the systematic review, focus groups, and input from the research team and expert reference group to identify resource priorities. Workstream 2 will involve the co-design of the digital resource through workshops (n = 4) with key stakeholders, including health profession students, professionals, and individuals with lived experience of delirium. Lastly, Workstream 3 will involve a mixed methods evaluation of the digital resource. Outcomes include changes to delirium knowledge and self-efficacy towards delirium care, and health profession students experience of using the resource.
CONCLUSIONS: Given the dearth of interdisciplinary educational resources on delirium for health profession students, a co-designed, interprofessional, digital education resource will be well-positioned to shape undergraduate delirium education. This research may enhance delirium education and the self-efficacy of future health professionals in providing delirium care, thereby improving practice and patients\' experiences and outcomes.
BACKGROUND: Not applicable.

Acceptance and Commitment Therapy (ACT) is an empirically supported psychotherapy that offers promise for the mental health of minoritised ethnic populations. Given the diversity of those presenting to inner-city services and barriers to accessing appropriate mental healthcare, we sought to develop a culturally syntonic ACT intervention for UK Vietnamese refugee communities in a practice-based partnership project between a National Health Service and local third-sector service in East London. The aim was to explore the feasibility, acceptability and impact of the adapted intervention to inform culturally inclusive clinical practice and future research. We outline key aspects of Vietnamese belief systems and culture, and consider how these might influence the optimisation of group-based ACT. We then present a mixed-method evaluation of the seven-session adapted ACT group for 11 participants (9 male and 5 female, aged between 44 and 73 years). Individual-level change analyses indicated clinically significant improvements in psychological flexibility for the minority of participants and a mixed pattern for impact on well-being. A thematic analysis and descriptive approach examined acceptability, feasibility and narratives of impact. Participants reported positive feedback on group experience, relevance and usefulness, and emergent themes indicate that the group facilitated key acceptance, commitment and behaviour-change processes, promoted social connections and increased engagement in meaningful life activities in relation to new perspectives and values-based action. Limitations are outlined, but overall, findings suggest preliminary support for the potential beneficial effect of the adapted ACT group as a feasible, culturally acceptable therapeutic approach for UK Vietnamese communities that is worthy of further investigation.