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This paper presents a coherent framework for designing and evaluating public involvement in research by drawing on an extensive literature and the authors' experience. The framework consists of three key interrelated dimensions: the drivers for involvement; the processes for involvement and the impact of involvement. The pivotal point in this framework is the opportunity for researchers and others to exchange ideas. This opportunity results from the processes which bring them together and which support their debates and decisions. It is also the point at which research that is in the public interest is open to public influence and the point at which the interaction can also influence anyone directly involved. Judicious choice of methods for bringing people together, and supporting their debate and decisions, depends upon the drivers of those involved; these vary with their characteristics, particularly their degree of enthusiasm and experience, and their motivation.

Background In recent years, patient and public involvement (PPI) in research has significantly increased; however, the reporting of PPI remains poor. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was developed to enhance the quality and consistency of PPI reporting. The objective of this systematic review is to identify the frequency and quality of PPI reporting in patient safety (PS) research using the GRIPP2 checklist. Methods Searches were performed in Ovid MEDLINE, EMBASE, PsycINFO, and CINAHL from 2018 to December, 2023. Studies on PPI in PS research were included. We included empirical qualitative, quantitative, mixed methods, and case studies. Only articles published in peer-reviewed journals in English were included. The quality of PPI reporting was assessed using the short form of the (GRIPP2-SF) checklist. Results A total of 8561 studies were retrieved from database searches, updates, and reference checks, of which 82 met the eligibility criteria and were included in this review. Major PS topics were related to medication safety, general PS, and fall prevention. Patient representatives, advocates, patient advisory groups, patients, service users, and health consumers were the most involved. The main involvement across the studies was in commenting on or developing research materials. Only 6.1% ( n  = 5) of the studies reported PPI as per the GRIPP2 checklist. Regarding the quality of reporting following the GRIPP2-SF criteria, our findings show sub-optimal reporting mainly due to failures in: critically reflecting on PPI in the study; reporting the aim of PPI in the study; and reporting the extent to which PPI influenced the study overall. Conclusions Our review shows a low frequency of PPI reporting in PS research using the GRIPP2 checklist. Furthermore, it reveals a sub-optimal quality in PPI reporting following GRIPP2-SF items. Researchers, funders, publishers, and journals need to promote consistent and transparent PPI reporting following internationally developed reporting guidelines such as the GRIPP2. Evidence-based guidelines for reporting PPI should be encouraged and supported as it helps future researchers to plan and report PPI more effectively. Trial registration The review protocol is registered with PROSPERO (CRD42023450715).

Background Young women living with perinatal infections of the Human Immunodeficiency Virus (YWLPHIV) in low- and middle-income countries are more likely to be challenged by social and health inequities, which can make adherence to life-long treatment difficult. We aimed to learn more about how YWLPHIV in Cape Town negotiated their adherence to antiretroviral treatment (ART) within their material environments. This study is one of the first to go beyond barriers and facilitators to adherence for people living with HIV to explore the role of the material environment in depth. Methods We adopted a multisensory arts-based community participatory approach and used visual and digital mediums for data-collection and analytical purposes. In our previous work, we identified a gap in the role of the material environment in ART adherence and proposed the Adherence Assemblage model grounded in critical phenomenology, which integrates biological, psychological, social, health system, political, natural, and material dimensions. This study co-explores non-living 'things'—such as bedrooms, doctor’s offices, pill containers, and condoms—that shape young women's adherence to ART in South Africa. The co-research team consisted of three academics, seven YWLPHIV (although they approved the study they could not be named as authors to protect their identities), one counsellor and two visual ethnographers. Data analysis was an iterative process with the co-research team. At first, we would reflect and journal the main insights individually, and then in joint meetings, we shared them. Together, we identified the main storylines and then created collaborative artworks we called, synthesis creations, in response. We operationalised this as a type of creative work that combines and integrates ideas or elements from multiple sources. It typically involves a process of synthesis, in which different pieces of information or artistic materials are brought together and recombined to form a new whole. Results We co-creatively synthesised our findings into one research documentary and five co-creative artworks. We synthesised four storylines: ‘living with a (un)exposed HIV secret’, ‘multisensory experience of adherence’, ‘things that matter in adherence’, and ‘engaging spaces and places. Things such as the pill itself were perceived as triggers for associated memories and evoked emotional responses, impacting the adherence behaviours of YWLPHIV. At times, non-adherence was described as an act of control, with young women narrated an experience of power by rejecting the pills. Besides the more obvious lines of argument on power dynamics, the findings suggest that materiality influences adherence too. However, it is seldom used as an analytical concept to investigate challenges related to ART. Conclusions In conclusion, understanding the material environment's role in adherence is crucial for developing more effective support systems for YWLPHIV. Further research that prioritises the specific needs of YWLPHIV emotional, cognitive, and psychosocial development, while paying attention to the material environment is needed. Plain English summary This study explores how young women in Cape Town, South Africa, who were born with HIV, relate to their medication. These young women got HIV from their mothers during pregnancy, birth, or breastfeeding. We worked closely with them to understand how everyday things in their lives—like their bedrooms, pill bottles, clinics, and even condoms—affect how they think about and take (or choose not to take) their HIV treatment, called antiretroviral treatment (ART). We employed creative methods, including drawing, photography, and storytelling, to help the young women share their experiences. Together, we found four big themes: keeping HIV a secret, how the treatment feels in their bodies and minds, the role of physical objects in their treatment routines, and how the environments they live in shape their choices. We learned that where they live, who they live with, and even what their spaces look and feel like—whether messy or calm, private or shared—can make it easier or harder for them to stick to their treatment. For example, taking medication in a shared home can feel risky if others do not know their HIV status. Some young women used to skip medication to feel in control of something in their lives. The results were turned into a short film and artworks to help health workers, families, and policymakers listen better and build support systems that work for young women. This study shows that HIV care is about much more than just giving people pills—it’s about understanding the full picture: their emotions, the objects around them, and the physical and social spaces they move through every day. It is important it is to listen to young women and consider their full lives—not just their illness—when designing HIV care.

Background Involvement of service-users at all levels of the mental health system is a policy imperative in many countries internationally. However, putting policy into practice seems complex; little is known about how best to involve service users and efforts are often criticized for being tokenistic. In low-and-middle income countries, less attention has been given to the roles of service users within mental health systems. The proposed study is part of a larger project intended to develop service-user involvement in mental health system strengthening in Ethiopia. A Theory of Change (ToC) model has already been developed through a participatory approach. This study protocol aims to describe the theoretical background and methods to pilot this model using participatory action research (PAR) and explore participants’ experience of involvement. Methods The proposed study will apply a PAR approach situated in critical social theory and conduct a phenomenological case study to find out participants’ experience of involvement. This will be conducted in three stages. The focus of Stage 1 will be to(i) establish a Research Advisory Group (RAG), and Research Participant Group (RPG) at district and primary healthcare facility levels, respectively, and (ii) identify and prioritize potential areas of concern for involvement in the domains of advocacy, service planning and development, monitoring and improving service quality. In Stage 2, we will work with the RPG to develop a plan of action for the selected area. Stage 3 will aim to assist the RPG to implement and evaluate the plan of action. Process indicators and observation will be combined with in-depth interviews with participants to elicit their experiences of involvement. Thematic content analysis will be used. Discussion The participatory approach to mental health service user involvement in health system strengthening employed by this study will support the implementation of solutions through locally relevant and contextualized actions. Findings from this study will contribute to the body of knowledge towards understanding the complexity of implementation of service user involvement and refine the ToC model for transferability to similar settings.

Background The Caring for Carers (C4C) project aims to assess the effectiveness and acceptability of an online, group-based supervision program for mental health practitioners working with displaced communities in Bangladesh and in Türkiye and Northwest Syria. This paper highlights the integration of Rohingya perspectives to ensure responsiveness to the unique needs of displaced populations through the supervision program. Methods Adopting a community-based participatory research (CBPR) approach, the project engaged Rohingya community members in every phase to ensure the program’s relevance to local needs. A Rohingya Advisory Committee (RAC) was formed to integrate Rohingya perspectives and conducted in-depth interviews (IDI) and focus group discussions (FGD) with two female MHPSS service users and five male community members, respectively. As recommended by Kiger and Varpio (2020), thematic analysis was employed within a constructivist framework that acknowledged cultural variations in mental health perceptions. The C4C project employed several strategies to engage community members and integrate their perspectives. Stakeholder consultations involved MHPSS service users and community members, the RAC conducted workshops for supervisors, and engaged regularly with the project team providing insights on cultural and practical challenges and collaborating to adapt supervision program materials. Results FGD and IDI with service users and community members provided a first glimpse into the community’s needs, and experiences, whereas the advisory committee provided lived experiences, meaning of displacement, and ancestral background. The project team invested in a respectful relationship with the advisory committee, working collaboratively to reflect on each other’s perspectives through regular meetings and adding content and strategies to the supervision processes. Voices from the community informed the supervision program by elucidating contextual markers, cultural and situational understanding, appreciation, curiosity, experiential information, historical background, and perspectives on mental health needs as well as services. Conclusions Incorporating strategies and perspectives from the community, we aimed to provide a framework of community engagement termed as PEACE (Participation, Expertise, Agency, Connection, and Empowerment) along with enabling and challenging factors. Plain English summary Involving mental health service users and community members for which the services have been developed is a crucial stage to ensure mental health services are culturally sensitive. This is even more important for those representing forcefully displaced communities amid limited or no opportunities to contribute to the development and delivery of these services. Often, the voices of these communities are less sought raising concerns over the suitability and acceptability of the services. Community-based participatory initiatives help to include the voices of refugee or displaced communities in research and clinical practice. We aimed to collaborate with with Rohingya refugee community members living in Cox’s Bazaar, Bangladesh to ensure mental health services adequately capture their needs. A Rohingya Advisory Community (RAC) was formed in an effort to understand their needs and opinions to be able to provide culturally sensitive mental health services. Researchers initiated and continued discussions with the RAC for over 2 years. The RAC engaged in several activities such as workshops and presentations to help design a program to support Bangladeshi mental health practitioners to provide mental health care taking the cultural into account. Based on the discussion, we aimed to share a framework- PEACE, to guide meaningful participation in low-and-middle income countries. PEACE stands for Participation , respecting community Expertise , promoting Agency , building genuine Connections , towards Empowerment . In addition, we also discussed potential challenges such as lack of trust and resources, human rights violations to foster meaningful participation. Finally, we emphasized that models of participation from Western countries must be guided by the knowledge of community people who have better cultural, social, and political understanding.

Background The involvement of undergraduate medical students in research is pivotal for the advancement of evidence-based clinical practice. This study aimed to assess the extent of research involvement and the factors influencing it among undergraduate medical students in Bangladesh. Methods A multi-center cross-sectional study involving 2864 medical students from both public and private medical colleges was conducted between June and December 2023. Data on demographics, research involvement, participation in research training, future career aspirations in research, and obstacles encountered by students were collected. Statistical analyses were performed using SPSS 25. Results The mean age of the students was 21.8 ± 1.8 (SD) years, with the majority being female (61.8%). Overall, 21.5% ( n  = 617) were actively participating in research beyond academic activities. Approximately 7% ( n  = 205) had undergone formal research training, and 6.5% ( n  = 187) had experience in publications in peer-reviewed journals as first authors or coauthors. A total of 45.5% of the students faced multiple challenges during participating in research, with the two most difficult tasks being designing a study (26.7%) and data collection and recruitment of study participants (19.6%). Almost half of the students (47.2%, n  = 1352) showed an interest in pursuing a research career in the near future. The primary barriers preventing students from choosing a future research career were insufficient mentorship (16.3%), the perception of a lengthy career path (17.2%), and limited funding opportunities (15.9%). Factors that significantly encouraged research involvement included being male (adjusted odds ratio [aOR] 1.5, 95% CI: 1.2–1.8), studying in the senior academic phase (aOR 3.9, 95% CI: 2.7–5.6), previous education from an English-medium educational institute (aOR 1.8, 95% CI: 1.2–2.2), and encouragement from faculty (aOR 1.4, 95% CI: 1.1–1.7). Conclusion The proportion of research participation among the students was relatively low. To promote research engagement among undergraduate medical students in Bangladesh, comprehensive policy formulation and strong commitment at the highest levels are essential. Integrating national research policy into the curriculum could serve as a strategic measure for achieving this objective.

Plain English summary Foundations in Patient-Oriented Research is a course designed and piloted in Canada to help patients, researchers, health care professionals and health system decision-makers gain an introductory understanding of patient-oriented research, the research enterprise, and how to work in a team. The course curriculum was co-developed by a diverse group of people with different lived experiences and relevant expertise. The course is meant to be delivered in a ‘co-learning format’ with classes comprised of all the above stakeholder groups learning together. The purpose of this study was to explore the experiences of the project leaders, developers, facilitators and patient co-facilitators who were involved in the process of co-developing, piloting and revising the curriculum. Our findings suggest that co-developing a patient-oriented research curriculum increases its quality, uptake and credibility. The co-development process not only resulted in training that benefited the target learners, but it provided valuable learning experiences about patient-oriented research for the project leaders, developers, facilitators and patient co-facilitators. These findings and the resulting recommendations may provide guidance for other learning and development groups wishing to undertake a similar project. Background Foundations in Patient-Oriented Research is a course designed and piloted in Canada to build mutually beneficial relationships for conducting patient-oriented research by ensuring that relevant stakeholders – patients, researchers, health care professionals and health system decision-makers – have a common foundational understanding of patient-oriented research, the research enterprise, and team dynamics. The curriculum was co-developed by a group of patients, researchers, patient engagement experts and curriculum development experts and involved consultations with broader groups of the relevant stakeholders mentioned above. It was designed to be delivered in a ‘co-learning format’ with classes comprised of all stakeholder groups learning together. The purpose of this study was to explore the experiences of individuals involved in the process of co-developing, piloting and revising Foundations in Patient-Oriented Research . Methods An embedded case study was conducted with individuals who were involved in the co-development, pilot and revision of Foundations in Patient-Oriented Research . These individuals took on different roles during the curriculum development process, including project co-lead, developer, facilitator, and patient co-facilitator. The constant comparison method was used to inductively develop themes from the two focus group sessions. Results Discussions from the focus groups revealed the value of co-building the content, co-facilitating the course sessions, and the importance of the co-learning format. The training itself was perceived as valuable and the systematic approach to co-development was perceived as a success. Several barriers were identified, including the amount of resources, time and commitment required to complete the project. There was a notable tension between maintaining the integrity of the content and having the freedom to adapt it to local contexts. Over the course of the project, the project co-leads, developers and facilitators found that their own understanding of patient-oriented research deepened. Conclusions The findings of this study suggest that co-developing a patient-oriented research curriculum increases its quality, uptake and credibility. The co-development process not only resulted in training that benefited the target learners, but also built capacity for patient-oriented research within the project co-leads, developers, facilitators and patient co-facilitators. Our findings and recommendations may provide guidance for other learning and development groups wishing to undertake a similar project.

Social media data may augment understanding of the disease and treatment experiences and quality of life of youth with chronic medical conditions. Little is known about the willingness to share social media data for health research among youth with chronic medical conditions and the differences in health status between sharing and nonsharing youth with chronic medical conditions. We aimed to evaluate the associations between patient-reported measures of disease symptoms and functioning and the willingness to share social media data. Between February 2018 and August 2019, during routine clinic visits, survey data about social media use and the willingness to share social media data (dependent variable) were collected from adolescents in a national rheumatic disease registry. Survey data were analyzed with patient-reported measures of disease symptoms and functioning and a clinical measure of disease activity, which were collected through a parent study. We used descriptive statistics and multivariate logistic regression to compare patient-reported outcomes between youth with chronic medical conditions who opted to share social media data and those who did not opt to share such data. Among 112 youths, (age: mean 16.1, SD 1.6 y; female: n=72, 64.3%), 83 (74.1%) agreed to share social media data. Female participants were more likely to share (P=.04). In all, 49 (43.8%) and 28 (25%) participants viewed and posted about rheumatic disease, respectively. Compared to nonsharers, sharers reported lower mobility (T-score: mean 49.0, SD 9.4 vs mean 53.9, SD 8.9; P=.02) and more pain interference (T-score: mean 45.7, SD 8.8 vs mean 40.4, SD 8.0; P=.005), fatigue (T-score: mean 49.1, SD 11.0 vs mean 39.7, SD 9.7; P<.001), depression (T-score: mean 48.1, SD 8.9 vs mean 42.2, SD 8.4; P=.003), and anxiety (T-score: mean 45.2, SD 9.3 vs mean 38.5, SD 7.0; P<.001). In regression analyses adjusted for age, sex, study site, and Physician Global Assessment score, each 1-unit increase in symptoms was associated with greater odds of willingness to share social media data, for measures of pain interference (Adjusted Odds Ratio [AOR] 1.07, 95% CI 1.001-1.14), fatigue (AOR 1.08, 95% CI 1.03-1.13), depression (AOR 1.07, 95% CI 1.01-1.13), and anxiety (AOR 1.10, 95% CI 1.03-1.18). High percentages of youth with rheumatic diseases used and were willing to share their social media data for research. Sharers reported worse symptoms and functioning compared to those of nonsharers. Social media may offer a potent information source and engagement pathway for youth with rheumatic diseases, but differences between sharing and nonsharing youth merit consideration when designing studies and evaluating social media-derived findings.

Background Interventions in maternity health care settings often need to be studied within everyday clinical work and with the contributions of the staff. Therefore, the health care workers on-site play an important role for research success. This explains why it is necessary not only to focus on the outcomes of the research project itself, but also to study the whole process. Objective This study aimed to evaluate maternity care providers’ satisfaction with the use of a preliminary long version of a standardised tool for supporting shared decision making in women during early labour. Methods A cross-sectional survey was distributed to n  = 607 maternity care professionals working in the study sites which applied a tool to support shared decision making in primiparous women in early labour. The data was collected using RedCap®. It was analysed descriptively, and logistic regression modelling was applied to find associations between the application of the tool and care as well as work organisation. Results A total of 110 health care professionals answered the online survey including 95 (86.4%) midwives and 15 (15.3%) obstetricians. N  = 36 (43.9%) midwives stated that they found the tool helpful in the provision of care, whereas 46 (56.1%) did not agree. There was great dissatisfaction with the length of the preliminary tool. The tool adversely impacted the timely management of early labour care. Midwives with greater work experience (OR 0.82, p  = 0.02) and a higher workload (OR 0.97, 0.02) were less likely to agree that the tool facilitates their work organisation. Additionally, midwives with more work experience (OR 0.86) and a higher workload (OR 0.96) found the tool less likely to be useful for care provision. The implementation of the tool was challenging for many midwives (40.2%) and some feel their competencies are threatened by the tool (20.7%). Conclusions The involvement of maternity care providers in research is crucial for the success of projects, but they face challenges. Implementing a preliminary tool in clinical practice led to dissatisfaction mainly due to lack of time and partial understanding of its purpose. Providing adequate training and supportive leadership can help improve their understanding and satisfaction.

Background Initiatives are increasingly encouraging health and social care staff involvement in research, with evidence for patient and organisational level benefits. There is less evidence of the benefits for staff and whether this varies by type of involvement. This scoping review aimed to identify the different ways staff are involved in applied health research, the benefits experienced, and whether this varies by type of involvement. This will help to inform leaders in service organisations, funders, and researchers about how to maximise such benefits. Methods The scoping review followed the JBI methodology. Four databases were searched: CINAHL, MEDLINE, PsycINFO and Scopus. Grey literature was identified via Google, Google Scholar and relevant websites. Records had to be UK-based, published in English between 2003 and 2023 and cover applied health and care research, health care staff involvement and report on benefits. Text was extracted from records, coded afterwards, and quality checked. The benefits were distilled by four research active health care staff. Descriptive statistics and narrative synthesis were used to report the results. Findings In total, 49 records were reviewed, 42 records were from the database search and 7 from the grey literature search. Records were most commonly journal articles ( n  = 44), covering multiple care settings ( n  = 15) and mixed professional groups ( n  = 24), used qualitative methods ( n  = 22) and focussed on clinical academic roles ( n  = 21). Six benefits of involvement in research were distilled: personal fulfilment, general competencies/skills, connections/networks, opportunities for learning, opportunities for leading improvements in practice, and using evidence more effectively. Records that focussed on the more intensive clinical academic roles reported more examples of opportunities for leading improvements in practice, and the building of connections and social support. Non-clinical academic records more frequently reported that involvement in research provided opportunities for learning. Conclusions These findings support efforts to involve staff in research, with a range of benefits associated with enhanced job satisfaction, even when research involvement is in a less intense form, such as participation in a study. These findings can be used to encourage involvement, with recommendations for future research to review the benefits for social care staff, and to examine more directly the effect on staff wellbeing and retention.