An umbrella review of reviews on challenges to meaningful adolescent involvement in health research.

BACKGROUND: Less than 1% of studies on child and adolescent health report the involvement of adolescents in health research. This is attributed to barriers experienced by researchers and adolescents in the engagement process. To address this under-involvement of adolescents, we first need a better understanding of the factors that hinder adolescent involvement in health research. OBJECTIVE: We conducted an umbrella review of reviews to consolidate the review-level evidence on the barriers to meaningful involvement of adolescents in health research. METHODS: We preregistered this umbrella review of reviews with PROSPERO (CRD42021287467). We searched 11 databases; Google Scholar; and PROSPERO; supplemented by a hand search of the reference lists of eligible reviews, relevant journals, websites of 472 organisations, and input from experts. This resulted in the inclusion of 99 review articles exploring adolescent involvement in studies on adolescent physical or mental health, which were narratively synthesised. Adolescent coresearchers were engaged at all stages of the review. RESULTS: We found that adolescent involvement in health research is impeded by several challenges experienced by researchers and adolescents. Some challenges experienced by researchers were organisational issues which included limited resources, gatekeeping and paying adolescents. Some barriers were related to a lack of preparedness among researchers and included a lack of awareness of adolescent involvement, the need for training and guidance, and negative attitudes towards participatory research. There were also barriers around how adolescents can be involved, such as researchers finding it challenging to adapt to new methods, issues with recruitment and retention of adolescents, inclusiveness and accessibility. There were also challenges specific to adolescents, such as adolescents' skills and expertise, training, motivations and study goals. Finally, barriers related to the ethical involvement of adolescents included issues with power dynamics, confidentiality, safety and protection of adolescents. Some of the barriers reported by adolescents included tokenistic involvement, inaccessibility of adolescent involvement, and their competing demands. CONCLUSION: Researchers may find this review useful in understanding and planning for potential challenges of involving adolescents in research. Despite many identified barriers to adolescent engagement, few mitigation strategies were identified to address these barriers. There is a clear need to establish best practices for meaningful adolescent involvement in health research. PUBLIC AND PATIENT INVOLVEMENT IN THE REVIEW: Adolescents were involved at multiple stages of this umbrella review of reviews. They reviewed the protocol, screened 25% of the articles at title and abstract screening stage, screened 10% of full-text articles, and worked on data analysis. They also helped plan and conduct a participatory workshop with an adolescent advisory group to discuss the challenges experienced by adolescents in health research.

Community led health promotion to counter stigma and increase trust amongst priority populations: lessons from the 2022-2023 UK mpox outbreak.

BACKGROUND: Stigma, lack of trust in authorities, and poor knowledge can prevent health-seeking behaviour, worsen physical and mental health, and undermine efforts to control transmission during disease outbreaks. These factors are particularly salient with diseases such as mpox, for which 96% of cases in the 2022-2023 UK outbreak were identified among gay, bisexual, queer and men who have sex with men (MSM). This study explored stigma and health-seeking behaviour in Liverpool through the lens of the recent mpox outbreak. METHODS: Primary sources of data were interviews with national and regional key informants involved in the mpox response, and participatory workshops with priority populations. Workshop recruitment targeted Grindr users (geosocial dating/hookup app) and at risk MSM; immigrant, black and ethnic minority MSM; and male sex workers in Liverpool. Data were analysed using a deductive framework approach, building on the Health Stigma and Discrimination Framework. RESULTS: Key informant interviews (n = 11) and five workshops (n = 15) were conducted. There were prevalent reports of anticipated and experienced stigma due to mpox public health messaging alongside high demand and uptake of the mpox vaccine and regular attendance at sexual health clinics. Respondents believed the limited impact of stigma on health-seeking behaviour was due to actions by the LGBTQ + community, the third sector, and local sexual health clinics. Key informants from the LGBTQ + community and primary healthcare felt their collective action to tackle mpox was undermined by central public health authorities citing under-resourcing; a reliance on goodwill; poor communication; and tokenistic engagement. Mpox communication was further challenged by a lack of evidence on disease transmission and risk. This challenge was exacerbated by the impact of the COVID-19 pandemic on the scientific community, public perceptions of infectious disease, and trust in public health authorities. CONCLUSIONS: The LGBTQ + community and local sexual health clinics took crucial actions to counter stigma and support health seeking behaviour during the 2022-2023 UK mpox outbreak. Lessons from rights based and inclusive community-led approaches during outbreaks should be heeded in the UK, working towards more meaningful and timely collaboration between affected communities, primary healthcare, and regional and national public health authorities.

Exploring participatory health research and its application to speech and language therapy research practices.

BACKGROUND: The role of participatory health research (PHR) is increasingly acknowledged by funding bodies, researchers and civil society globally; however, it continues to be under-represented in the speech and language therapy (SLT) research literature. This collaborative research approach is associated with the increased application of research evidence, and the generation of positive impacts in practice, policy, health systems and society. AIMS: To increase researchers' and other participatory partners' understanding of PHR, and to demonstrate its applicability to research in the SLT field. METHODS & PROCEDURES: This aim is achieved through a discussion on PHR, its principles, benefits and challenges, and the evaluation of its impact. A recently developed evaluation framework to support the implementation of best engagement practices is examined, and recommendations for how this framework can be used to plan and evaluate engagement in participatory stuttering research is presented. MAIN CONTRIBUTION: This paper serves as an important conversation on the value of PHR to SLT research, and presents guidance to support its increased implementation in this research field. CONCLUSIONS & IMPLICATIONS: Conclusions & Implications: PHR remains an under-represented research approach in the SLT literature, despite increasing evidence demonstrating its effectiveness and value. It offers a potential solution to the research-practice gap, and challenges the ongoing research hierarchies by democrating the process of knowledge production. WHAT THIS PAPER ADDS: What is already known on this subject PHR is increasingly attracting the attention of funders, researchers and decision-makers due to a growing body of evidence in support of this collaborative research approach. Despite its potential to bridge the research-practice gap, PHR remains significantly under-represented in the SLT research literature. What this paper adds to the existing knowledge This paper discusses the principles, benefits, challenges and impact evaluation of PHR. A recently developed evaluation framework for supporting the implementation of best engagement practices is examined. A demonstration of how this framework can be used to plan and evaluate engagement in participatory stuttering research is presented. What are the potential or actual clinical implications of this work? Speech and language therapists play a key role in PHR, as co-researchers contributing essential context-based knowledge. It is therefore imperative that they understand the principles and practices of this approach in order to maximize their input in future participatory partnerships.

Enriching a randomized controlled treatment trial for anorexia nervosa by lived experience-Chances and effects of a lived experience council in the SUSTAIN study.

BACKGROUND: The development and advancement of treatment and care options is one priority in the field of eating disorders. The inclusion of persons with lived experience with eating disorders into clinical research could enrich and accelerate this endeavor, as they can add different perspectives on the disease and its treatment. Although lived experience perspectives are increasingly part of eating disorder research, they have not been widely or structurally implemented into clinical trials and there is limited information on the practice of participatory research, its framework and consequences. AIMS: The present work outlines the participatory collaboration with a lived experience council in the randomized controlled treatment trial SUSTAIN. MATERIALS & METHODS: The manuscript is a participatory publication co-written by individuals with lived experience with anorexia nervosa and eating disorder researchers. RESULTS: We report on motivations for this approach, our collaboration principles, structures and shared experience of working together in the trial, the potential burdens and benefits related to participation for people with lived experience. DISCUSSION: We outline future directions and perspectives to integrate a participatory framework into clinical eating disorder research. CONCLUSION: The involvement of people with experiential knowledge is complex, but possible in clinical research on ED and bears huge potential for the development of more effective care. PUBLIC SIGNIFICANCE: Incorporating perspectives of people with lived experience into a participatory framework of mental health research bears huge potential on a societal level. This includes more relevant research topics and designs, more tailored and effective interventions, and facilitated implementation, as well as dissemination, higher credibility, destigmatization of mental illness, and patient empowerment. Participatory clinical research, however, needs structural anchorage within science and society.

Understanding the evolution of trust in a participatory health research partnership: A qualitative study.

INTRODUCTION: Advancements in evaluating the impact of participatory health research (PHR) have been made through comprehensive models like the community-based participatory research (CBPR) conceptual model, which provides a useful framework for exploring how context and partnership processes can influence health research design and interventions. However, challenges in operationalising aspects of the model limit our understanding and evaluation of the PHR process. Trust is frequently identified as an important component of the CBPR model, which supports the development of key partnership outcomes, such as partnership synergy. However, trust continues to be limited to a binary view (as present or absent), which is problematic given its inherently dynamic and temporal nature. STUDY AIM: The aim of this qualitative study is to understand the evolution of trust in the national public and patient involvement (PPI) network in Ireland. SETTING AND PARTICIPANTS: Participants from the PPI network (n = 15/21) completed a semistructured interview discussing the evolution of trust by reviewing four social network maps derived from a previous longitudinal study. ANALYSIS: Following Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data. RESULTS: Participants described the evolution of trust as a function of three contextual factors: (1) the set-up and organisation of the network, (2) how people work together and (3) reflection on the process and outcomes. Their descriptions across these themes seemed to vary depending on partnership type with National Partners and Site Leads having more opportunities to demonstrate trust (e.g., via leadership roles or more resources), compared to Local. Thus, visibility and the opportunity to be visible, depending on the set-up and organisation of the network and how people work together, seemingly play an important role in the evolution of trust over time. Based on these findings, we provide important questions for reflection across themes that could be considered for future PHR partnerships. DISCUSSION: Given that the opportunity and visibility to build and maintain trust over time may not be equally available to all partners, it is important to find ways to invest in and commit to equitable relationships as the key to the success (i.e., longevity) of partnerships. We reflect on/offer important implications for those engaging in PHR partnerships and those who fund such research. PATIENT OR PUBLIC CONTRIBUTION: A Research Advisory Group comprising four research partners (representing academic, service and community organisations) from the PPI Ignite Network provided input and approval for the research objectives of this study as well as previously published work informing this study. Informal consultation occurred with members of this group to discuss findings from this study, assisting with the way findings are presented and described, to be accessible for diverse audiences. Two Research Advisory Group members were involved in the interpretation of the results, and one is a co-author of this manuscript (Zoe Hughes).

Time to re-envisage culturally responsive care: Intersection of participatory health research and implementation science.

AIM: In the context of widening societal diversity, culturally and linguistically diverse patients continue to experience inequities in healthcare access and deficiencies in standards of nursing care. Re-framing culturally responsive care as a complex intervention spanning multiple interacting factors at micro, meso and macro levels is an essential prerequisite for addressing knowledge translation gaps into everyday nursing practice. To this end, this paper proposes and explicates the potential of applying synergistic participatory implementation methodologies for developing effective implementation strategies with impact at individual and wider structural levels. DESIGN: Discussion Paper. DATA SOURCES: A co-design case study is presented as an example of combining normalization process theory and participatory learning and action to investigate and support the implementation of culturally responsive care in general practice nursing. IMPLICATIONS FOR NURSING: Enacting culturally responsive health care is inherently complex in that it is influenced by multiple interacting factors. Viewing culturally responsive care as a complex intervention and incorporating a synergistic participatory implementation science approach offers possibilities for addressing the documented shortcomings in the implementation of culturally responsive nursing care. CONCLUSION: There is a need to move away from conventional approaches to conceptualizing and generating evidence on culturally responsive care. Incorporating participatory implementation methodologies can provide a new lens to investigate and support whole system implementation strategies. IMPACT: The combination of participatory and implementation methodologies is both theoretically and empirically informed. Engaging stakeholders in the co-design and co-production of evidence and solutions to long standing problems has the potential to increase the likelihood of influencing iterative and sustainable implementation and changes to clinical practice and systems. PATIENT OR PUBLIC CONTRIBUTION: This work is part of a wider programme of participatory health research on migrant health, partnering with a non-governmental organization that supports migrants.

Exploring theoretical mechanisms of community-engaged research: a multilevel cross-sectional national study of structural and relational practices in community-academic partnerships.

BACKGROUND: Community-Based Participatory Research (CBPR) is often used to address health inequities due to structural racism. However, much of the existing literature emphasizes relationships and synergy rather than structural components of CBPR. This study introduces and tests new theoretical mechanisms of the CBPR Conceptual Model to address this limitation. METHODS: Three-stage online cross-sectional survey administered from 2016 to 2018 with 165 community-engaged research projects identified through federal databases or training grants. Participants (N = 453) were principal investigators and project team members (both academic and community partners) who provided project-level details and perceived contexts, processes, and outcomes. Data were analyzed through structural equation modeling and fuzzy-set qualitative comparison analysis. RESULTS: Commitment to Collective Empowerment was a key mediating variable between context and intervention activities. Synergy and Community Engagement in Research Actions were mediating variables between context/partnership process and outcomes. Collective Empowerment was most strongly aligned with Synergy, while higher levels of Structural Governance and lower levels of Relationships were most consistent with higher Community Engagement in Research Actions. CONCLUSIONS: The CBPR Conceptual Model identifies key theoretical mechanisms for explaining health equity and health outcomes in community-academic partnerships. The scholarly literature's preoccupation with synergy and relationships overlooks two promising practices-Structural Governance and Collective Empowerment-that interact from contexts through mechanisms to influence outcomes. These results also expand expectations beyond a "one size fits all" for reliably producing positive outcomes.

Implementation of clinical guidelines for osteoarthritis together (IMPACT): protocol for a participatory health research approach to implementing high value care.

BACKGROUND: The evidence-based interventions of exercise and education have been strongly recommended as part of prominent clinical guidelines for hip and knee osteoarthritis (OA) for more than ten years. Despite the wealth of strong evidence that exists, implementation in practice is sub-optimal. This paper describes the key methodologies used in the co-design, tailoring, and evaluation of the IMPACT project implementation strategies, to confront this problem across multiple levels (micro, meso, macro) in public and private healthcare settings in Ireland. METHODS: Using a type III hybrid implementation-effectiveness design, a participatory, dynamic and iterative process will be used to tailor and evaluate multi-level implementation strategies using the following stages: 1) Co-design the implementation strategies with key stakeholders using best evidence, a theory-driven implementation framework (Consolidated Framework for Implementation Research), local context and expert consensus; 2) Pilot and evaluate the implementation strategies by training physiotherapists to deliver the evidence-based Good Life with osteoArthritis Denmark (GLA:D®) education and exercise programme using the implementation strategies, and conduct a mixed-methods process evaluation; 3) Adapt the implementation strategies based on implementation process evaluation indicators from stage two. The adapted strategies will be used for scale-up and sustainability in subsequent GLA:D® Ireland training programmes that will be rolled out nationally. Evaluation of effectiveness on patient and cost outcomes will continue up to 12 months post-programme delivery, using an online patient registry and pre-post design. DISCUSSION: This implementation science project aims to use participatory health research to address a gap in management of OA across public and private healthcare settings. This research has the potential to change practice and promote a policy of exercise and physical activity referral for chronic musculoskeletal disease that utilises community engagement effectively and enacts change 'together', with involvement of researchers, decision-makers, clinicians and patients.

Confronting the Complexities of "Co-Production" in Participatory Health Research: A Critical, Reflexive Approach to Power Dynamics in a Collaborative Project on Parkinson's Dance.

The literature on participatory health research describes various ways of overcoming obstacles to the co-production of knowledge by redressing power imbalances. In this article, we propose an approach to understanding and analyzing co-production which conceptualizes power, not as an obstacle but as an intrinsic, productive force in bringing "co-production" into being. In the approach, "co-production" is understood and analyzed as a tensional, complex, unstable entity that emerges in power-imbued negotiations of meanings throughout the research process. Focusing on a participatory project on Parkinson's dance, our purpose is to illustrate how the approach can generate knowledge about the complexities of "co-production." We also demonstrate how the approach can provide a foundation for a relational ethics that confronts the complexities head-on. In conclusion, we discuss the insights gained into the possibilities and challenges of co-production and the value of the approach as a foundation for relational ethics.

The Social Ecology of Power in Participatory Health Research.

As increasing value is placed on community engagement, co-creation, and transdisciplinarity as essential ingredients to improve policies; participatory health research has gained popularity as a promising avenue for stakeholders to collaborate and solve problems in innovative ways. Participatory research has a history of success but important caveats caution against romanticizing the approach. The assumption that participation will empower participants overlooks potential feelings of disappointment or exploitation amid power imbalances, vested interest, and representativeness issues. This article outlines a multilevel conceptual framework that explicitly situates power dynamics within a wider system of bidirectional interconnections operating at the individual, interpersonal, and structural levels. It then provides a practical tool to examine and address these dynamics in a comprehensive and systematic way. This can be helpful for researchers and community practitioners working in contexts where democratic principles are not broadly endorsed and where power dynamics operate in subtle ways.

[Involving the seldom heard in participatory health research: challenges and strategies]. / "Selten Gehörte" für partizipative Gesundheitsforschung gewinnen: Herausforderungen und Strategien.

BACKGROUND: Participatory health research is gaining increasing recognition in the public health sector. The people whose lives or work are central to wicked issues around health inequalities are integrated into the projects. Including diverse forms of knowledge and perspectives has the capability of strengthening health equity in specific settings. That proffers agency to the voices of those who are seldom heard. Often, participatory health research (PHR) is done with communities. Finding the truly isolated - those who are not connected to others or to services, the seldom heard - presents a challenge for research. Without hearing the voices of those most distanced from mainstream discourse we run the risk of misunderstanding issues pertinent to their lives. This narrative overview highlights this problem and aims to contribute a solution approach for research practice. METHODS: An extensive literature review for participatory research references in the German language was used and the international literature was also screened. Furthermore, the processes of three participatory research projects were evaluated. RESULTS/DISCUSSION: The specified strategies to involve the seldom heard refer to lowered systemic barriers and improved local capacity for their participation. For example, before research can start, time should be given for a preparatory phase. This can be used to invest in relationships and co-operation to bridge the distance to research.

[Promoting autonomy in the field of open child and youth work-results from a participatory evaluation project]. / Autonomie in der Offenen Kinder- und Jugendarbeit fördern ­ Ergebnisse eines partizipativen Evaluationsprojekts.

BACKGROUND: Facilitating participation is part of the mandate of open child and youth work. This also means youths have a voice in the development of youth center offerings. The participatory health research approach can support accomplishing this mandate. OBJECTIVES: As a consequence of the municipal youth congress's demand for more autonomy so-called "Autonomous Openings" (AO) - the opening of youth centers by the youths themselves and spending their time independently - were implemented in Braunschweig, Germany. Participatory research methods were used to scientifically support the center's youths and professionals in evaluating the AOs. This paper reports on one of three contributing youth centers. STUDY DESIGN AND SETTING: After each AO the adolescents reflected on their experiences by filling in a questionnaire jointly developed by researchers and professionals. The survey was accessible via the digital tool "Mentimeter". The professionals' perspective was captured in interviews. Topics such as revealing one's personal interests and the development of competencies were the main interest. The gathered data was assessed by the researchers and reflected upon together with youths and professionals during a workshop. RESULTS: Ten AOs took place throughout a period of ten months. Five adolescents were preliminary responsible and about another 20 were co-responsible. The results show that young people revealed their own interests more substantially. Moreover, the professionals observed a strengthening of competencies in various fields. Several factors were identified that can facilitate transferability to other youth centers. Reliable relationships that enable a trusting and equal exchange between professionals and youths are essential.

[Roles and their dynamics in participatory research communities]. / Rollen und Rollendynamiken in der partizipativen Forschungsgemeinschaft.

The participatory research approach results in changes in roles and relationships for researchers and coresearchers compared to traditional research concepts. In the form of a workshop report, this article describes reflections and findings on the question of how roles are perceived and filled in participatory health research (PHR). Researchers and practitioners from two subprojects in the research consortium PartKommPlus evaluated their experiences from several years of cooperation and developed insights into which dynamics were important for the design of roles and what should be considered for a productive development of roles.Five important elements were identified: the significance of the scope for action resulting from the ties of the participants to their respective institutions; the change of roles and relationships over the course of the project time; the significance of trust for functioning cooperative relationships; the problem of information confidentiality for scientific exploitation; and the political character of the cooperation, which is based on the claim for change of participatory research and which presupposes shared basic attitudes and goals. Finally, the importance of joint reflection on role design, which contributes to the success or failure of participatory research cooperation and the quality of its results, is highlighted.

[Ethics in participatory research-reflection on challenges and possible impairments for participants]. / Ethische Aspekte in der partizipativen Forschung ­ Reflexion von Herausforderungen und möglichen Beeinträchtigungen für Teilnehmende.

In medical research, it is established practice to discuss ethical issues, usually based on the criteria informed consent and voluntary participation, protection from harm, confidentiality, and anonymity. The discussion of ethical questions is also gaining importance in social science research. The same applies to participatory research, which is not yet very widespread in Germany. Because this approach is based on equality between all those involved, it results in relationships uncommon in nonparticipatory research. Therefore, ethical questions are raised in a different way. Partly based on an analysis of documents, a case study from participatory health research will be used to illustrate how the principle of harm reduction can be recognized. The case study shows this from the perspective of both the researchers and the peer-researchers.From the peer-researchers' perspective, there are different challenges in participatory teamwork, which can bring impairments and consequently result in a risk of harm. This can lead to disappointments, for example, when from the peer-researchers' perspective individual support during a research process is insufficient.Conclusions for dealing with ethical aspects in participatory research projects will be derived from the gathered experiences. The application of the criteria used in nonparticipatory research can be an opportunity to strengthen the discussion of ethical issues as part of participatory processes. It can also be a chance to combine the ethical discourse in participatory and qualitative social science research.

[Research impact and participatory health research: an international debate]. / Wirkungen in der partizipativen Gesundheitsforschung: Eine Einordnung in die Diskurse zum Forschungsimpact.

In recent years, the academic world has been increasingly concerned with the social benefits of research and how they can be identified and demonstrated. Various discussions are being held on the impact of research, which are especially controversial in those countries where impact has become an important factor in the distribution of research funding. For participatory health research, a form of research that prioritises the engagement of those whose work or lives are the topic of the research, achieving social just impact outside the academic world is fundamental to its goal to reduce health inequalities.This article explores the questions of how research impact can be understood and collected and whether the impact of participatory health research can contribute to equal health opportunities. It addresses aspects of impact discussions in the United Kingdom and Germany exemplarily and presents the current state of the professional debate on the topic. Finally, it describes the drivers of participatory health research that can lead to a strengthening of equal health opportunities.The discussion of research impact allows for assessing and strengthening the sustainability and value of research, not only in the field of participatory health research. The diverse impacts of participatory health research have, however, the potential to reduce health inequalities and need to be recognised as such.

[Continuing participatory research beyond the end of projects: participatory quality development in municipal health promotion]. / Verstetigung partizipativer Forschung über das Projektende hinaus: Partizipative Qualitätsentwicklung in der kommunalen Gesundheitsförderung.

The limited timeframes of participatory health research (PHR) studies make it difficult to achieve the desired specific social changes through the projects. This is particularly true for the promotion of health equity in municipal settings. This article examines how participatory quality development (PQE) approaches can complement PGF in order to implement participation as a quality criterion in health promotion and to contribute to the sustainability of research results.Based on the structure and course of two participatory research projects on integrated municipal health promotion, quality development processes with older people and parents of preschool children are described.Structural and process design contribute significantly to the transfer of research results into practice and beyond the end of the project. In their structure and by continuously involving local partners and stakeholders, projects must ensure that the principles of participatory quality development are implemented in processes from the very beginning.Participation as a quality criterion in health promotion is now well established. However, there is a deficit in the implementation of this claim. PGF and PQE consistently implement the criterion but place high demands on structure and process design. It is recommended that participation principles should be anchored in cooperation agreements in the municipal partnerships and supportive frameworks for participatory approaches should be continuously developed.

[Participatory health research: origins and current trends]. / Partizipative Gesundheitsforschung: Ursprünge und heutiger Stand.

Participatory health research (PHR) is receiving increasing attention internationally as an approach for generating scientific knowledge to promote health equity for marginalized groups. A similar trend has been observed in Germany over the past several years. The primary characteristic of PHR is the direct participation of those people in the research process whose work or living conditions are the subject of the research. This article provides an overview of the origins, foundational principles, and current developments in the field of PHR. The international research literature is discussed in the form of a narrative review with a focus on previous review articles and publications from the International Collaboration for Participatory Health Research.The review indicates that a growing number of health researchers are engaged in participatory research and that a scientific discourse and various organizations have developed in many countries focused specifically on PHR. The following trends are of particular importance: consolidation and networking; clarifying the question of what constitutes participation in research; evaluating the impact and added value of PHR; adapting PHR to specific areas of application; and clarifying ethical questions in PHR.

Partnerships, Processes, and Outcomes: A Health Equity-Focused Scoping Meta-Review of Community-Engaged Scholarship.

In recent decades, there has been remarkable growth in scholarship examining the usefulness of community-engaged research (CEnR) and community-based participatory research (CBPR) for eliminating health inequities.This article seeks to synthesize the extant literature of systematic reviews, scoping reviews, and other related reviews regarding the context, processes, and research designs and interventions underlying CEnR that optimize its effectiveness. Through a scoping review, we have utilized an empirically derived framework of CBPR to map this literature and identify key findings and priorities for future research. Our study found 100 reviews of CEnR that largely support the CBPR conceptual framework.

Developing dementia-friendly pharmacies in Austria: a health promotion approach.

The need for integrated, accessible and person-centred care for people with dementia to foster quality of life and facilitate life in the community has been voiced by health policy. Pharmacies have the potential to provide easily accessible information and support for people with dementia, caregivers and the public. The 'Dementia-friendly Pharmacy' programme aimed at re-orienting community pharmacy in Austria, focusing on stronger inclusion of professional counselling into core services. It followed principles of health promotion and person-centred care, aiming at empowering all actors involved, and at fostering quality of life. Methodologically, the programme was based on participatory health research, thus involving all relevant actors and consolidating their perspectives on issues related to dementia care. In the course of the programme, a workshop series covering topics relevant for dementia care in community pharmacy, as well as prototypes for small-scale projects were developed, and measures were taken for securing sustainability. Findings related to programme development and implementation encompass pharmacy staff's motivation to participate in the programme, counselling knowledge and skills development, experience with building community partnerships and cross-organizational development and sustainability. Furthermore, effectiveness of the programme has been established. These findings are discussed against the background of re-orienting pharmacies.

Mindfulness-based practices with family carers of adults with learning disability and behaviour that challenges in the UK: Participatory health research.

BACKGROUND: Family carers of adults with learning disability and behaviours that challenge lead complex and stressful lives. Their caring role can leave them isolated and unsupported. In the UK, effective services designed to build resilience for people in long-term caring roles are lacking. There are none (to our knowledge) designed using a participatory health research (PHR) approach with family carers and professionals. OBJECTIVE: With positive behaviour support (PBS) and mindfulness and acceptance and commitment therapy (ACT) as key elements, a PHR approach was used to understand the basis for a successful course that supported the capabilities and resilience of family members in long-term caring roles. DESIGN: The research was guided by the principles of PHR with participation as the defining principle throughout. Central to the research were reflexive conversations (communicative spaces) where diverse knowledges were shared and critiqued. FINDINGS: Mindfulness/ACT can change long-standing response behaviours and build personal resilience and improve mental health. Elements enabling positive change included a facilitation approach for collaborative reflexivity and the complementary, interactive approach to collaborative enquiry for learning and decision making afforded by PHR. DISCUSSION: The use of PHR accessed knowledges that would have been lost to more traditional, professional-expert driven processes and facilitated change in constructs for action for both professionals and family carers. Findings challenge service providers to consider how experiential knowledge has agency in professional practice and service design. Reflection on the PHR process across the FaBPos project led to a re-consideration of quality issues in relation to PHR and participation.