Research Partnerships Research Articles

Public involvement in an aggregate and individual participant data meta-analysis of mindfulness-based programmes for mental health promotion

BackgroundInvolving the public in evidence synthesis research is challenging due to the highly analytic nature of the projects, so it is important that involvement processes are documented, reflected upon, and shared to devise best practices. There is a literature gap on the involvement of the public in individual participant data meta-analyses, particularly in public health projects. We aimed to document and reflect on our collective experiences of involving and being involved as public stakeholders at all stages of a systematic review and individual participant data meta-analysis project.MethodsWe formed a stakeholder group made of four members of the public at the beginning of our evidence synthesis project comprising a systematic review, an aggregate data meta-analysis, and an individual participant data meta-analysis of mindfulness-based programmes for mental health promotion in non-clinical adults. Following each group meeting, members and participating researchers completed written reflections; one group member collected and collated these. At the end of the project, a reflective writing workshop was held before all members completed their final reflections. Everyone completed an adapted, open-ended questionnaire which asked about what did and did not work well, the overall experience, what could be improved, and the felt impact the stakeholder group had on the research.ResultsOverall, the stakeholders and researchers reported a positive experience of working together. Positives from the stakeholders’ point of view included learning new skills, experiencing research, and making new friends. For the researchers, stakeholders helped them focus on what matters to the public and were reinvigorating research partners. The challenges stakeholders experienced included having long gaps between meetings and feeling overwhelmed. The researchers found it challenging to strike the balance between asking stakeholders to be involved and for them to learn research-related skills without overburdening them and making sure that the learning was engaging. When looking back at their experience, stakeholders described seeing their impact on the project in hindsight but that this was not felt while the project was being carried out.ConclusionSuccessfully involving the public in complex evidence synthesis projects is possible and valuable from the points of view of the researchers and the stakeholders. However, it requires a significant time, skill, and resource investment that needs to be factored in from project inception. Further guidance and stakeholder training materials would be helpful. Specific suggestions are provided.

The Metallurgy of Additive Manufacturing: Potentials and Challenges towards Industrialisation

Abstract The present paper discusses the potential and challenges of processing metallic materials using additive manufacturing. Particular focus is given to laser powder bed fusion (PBF-LB/M) and the use of traditional alloy powders such as Al alloys and Ni-based superalloys, as well as novel materials such as metal-matrix composites. The research includes the improvement of the processability of these alloys using PBF-LB/M and optimizing material properties such as strength, creep resistance, and thermal conductivity of printed parts for various applications. Another important aspect presented within this manuscript is the digital representation of advanced manufacturing systems to improve manufacturability and enable advanced quality control. Herein, the development of a digital twin through in-situ process monitoring for the direct energy deposition process of laser metal deposition is presented. In the last part, the future of materials development for additive manufacturing is discussed, focusing on applying material computational techniques. All demonstrated examples result from the successful cooperation between the Chair of Materials Engineering of Additive Manufacturing, TUM, and its industrial and research partners.

Co-Design Workshops to Develop a Psychosocial Support Service Model for Refugees in Sweden Affected by Gender-Based Violence.

Experiencing gender-based violence (GBV) is common among refugees. Intersecting systems of oppression can increase the risk of GBV and of suffering detrimental consequences, while concurrently creating barriers to meaningful support. Despite this, refugees with lived experience of GBV are rarely involved in the development, planning and adaptation of services and policies. This article reports on a formative research process that aimed to involve public contributors (refugee victim-survivors of GBV) and relevant stakeholders in co-designing a service model aimed at improving psychosocial support in Sweden. Led by a partnership of public contributors and academic researchers, the research process consisted of iterative cycles of co-design workshops, complemented by scoping of existing literature. The co-design process resulted in a characterisation of the psychosocial service system needs, as perceived by the survivor co-researchers and stakeholders, and a two-level empowerment and support service model. The model included (i) a community-based intervention to promote help-seeking and (ii) psychosocial group support delivered in specialist clinics. Outcomes of the project included perceived benefits for those involved, service-led direct changes and acquisition of funding for continued research on the co-designed model. Improving psychosocial support for refugees in Sweden affected by GBV requires safe spaces to connect with peers and familiarise with available services, laws and rights in the society. Further, strengthened collaborations across sectors are necessary to meet the variety of needs. Co-design workshops were an effective way to initiate changes in the service delivery model for psychosocial support for refugees in Sweden affected by GBV. This is a participatory reflection on a participatory process. The survivor co-researchers contributed to designing and carrying out the PPI process and have co-authored this manuscript.

Research trends in nurse-parent partnership: A scoping review of the paediatric field in South Korea.

To analyse and describe the trends concerning nurse-parent partnerships in South Korean research, presenting their implications in paediatric care and guiding future directions for partnership research. A scoping review. The scoping review was conducted according to the framework outlined by Arksey and O'Malley. This review method consists of five stages: (1) identifying a research question, (2) identifying relevant studies, (3) selecting relevant studies, (4) charting the data extraction and (5) collating, summarizing and reporting the results. The studies reviewed were searched from electronic databases. Thirty studies were analysed for general characteristics, type of research method and findings from quantitative and qualitative research. Among the quantitative research, factors associated with partnerships, such as self-efficacy, quality of care and coping, were commonly associated with nurse-parent partnerships regardless of parent-, child- and nurse-related factors. The intervention methods included active parental participation and the development of educational materials. In the review of qualitative research, parents and paediatric nurses experienced that even when both groups occupied the same environment simultaneously, a disparity existed between the paediatric nurses' and parents' perceptions of their partnership experiences. Strengthening nurse-parent partnerships is crucial in improving health outcomes and quality of life for paediatric patients in South Korea. Effective collaboration, emphasizing mutual respect, effective communication, and shared decision-making, is essential in paediatric nursing care. This requires ongoing research, including both parents and a multidisciplinary approach to build supportive relationships across various age groups. Recognizing parents as key members of the care team, with valuable insights and contributions, enhances care quality. Additionally, enhancing paediatric nurses' self-efficacy, empowerment, and communication skills through continuous education is vital to improving parents' perceived quality of nursing. Partnership-centred practices not only boost care quality but also fortify the bond between healthcare providers and families, promoting better health outcomes. This work did not incorporate patient or public contributions, as its methodology was centred on a scoping review approach.

Study Protocol for the Opioid and Pain Treatment in Indigenous Communities Trial: A Systems Level Intervention for Enhanced Screening and Brief Intervention and Referral for Co-Occurring Chronic Pain and Opioid Use Disorder.

American Indian/Alaska Native (AI/AN) individuals have the highest rates of opioid overdose mortality and chronic pain (CP) compared to other racial/ethnic groups in the United States. These individuals also report higher rates of pain anxiety and pain catastrophizing, which are both associated with poorer outcomes and risk for opioid misuse (OM) and opioid use disorder (OUD) among individuals with CP. Yet, no prior studies have examined rates of comorbid pain and OUD among AI/AN adults. This commentary describes an implementation research partnership of 3 AI/AN-serving clinics and a university team that utilizes an implementation hybrid type III design to examine the impact of implementation strategies on adoption and sustainability of evidence-based screening and brief intervention for CP and OM/OUD among AI/AN clients. As part of our community-engaged approach, we embrace both AI/AN models and Western models, and a collaborative board of 10 individuals guided the research throughout. We hypothesize that our culturally centered approach will increase rates of screening and brief intervention and improve identification of and outcomes among AI/AN clients with CP and OUD who receive treatment at participating sites. Each site convenes a workgroup to evaluate and set goals to culturally center screening and brief interventions for CP and OM/OUD. Data collected include deidentified electronic health records to track screening and brief interventions and rates of CP and OUD; provider and staff surveys beginning prior to implementation and every 6 months for 2 years; and a subset of clients will be recruited (N = 225) and assessed at baseline, 6, and 12 months to examine biopsychosocial and spiritual factors and their experiences with culturally centered screening and brief intervention. Cultural adaptations to the measures and screening and brief intervention as well as barriers and facilitators will be addressed. Recommendations for successful Tribal health clinic-university partnerships are offered.

Shaping understandings through reflexive practice: Learnings from participatory research on aging with multiple sclerosis

BackgroundParticipatory research has gained traction as an approach to unlock perspectives when creating scientific knowledge and to facilitate societal changes. By conducting research with people, participatory research strives to engage individuals’ perspectives in designing, conducting, and disseminating the research. Nevertheless, few studies have unpacked how understandings of the studied phenomenon are shaped among diverse research partners and, concurrently, how different perspectives are combined. Nested within an overall participatory mixed methods study on aging with multiple sclerosis (MS), this qualitative study explores how understandings of aging with MS are shaped in encounters between university researchers, older adults with MS, and employees in a patient association.MethodsThe study was collaboratively conducted in Denmark by three research partners: a group of older adults with MS, employees in a patient association, and university researchers. Data on how different understandings of aging with MS were represented and shaped during the three-year research process was generated through field notes, meeting minutes, focus group interviews, and individual interviews. The collected data was analyzed through a thematic network analysis.ResultsThe study demonstrates how different understandings of aging with MS were represented among the research partners when the research was initiated. These understandings were shaped prior to —and, therefore, outside—the research setting, drawing from the research participants’ lived experiences, professional backgrounds, and organizational cultures or situated in larger societal narratives. Through a process centered on reflexivity among the engaged research partners, the understandings of what it means to age with MS was shaped and re-shaped and eventually merged into a more dynamic understanding of later life with MS where different perspectives could co-exist.ConclusionThe findings demonstrate that research partners, including older adults with MS and employees from a patient association, brought diverse understandings to the study. Reflexive practices enabled these perspectives to co-exist, enhancing engagement and transparency, and fostering a dynamic understanding of later life with MS. This highlights the value of reflexivity in evolving complex understandings within participatory research.

A scoping review of patient and public involvement in empirical stroke research.

Impactful, evidence-based solutions in surveillance, prevention, acute care, and rehabilitation for stroke survivors are required to address the high global burden of stroke. Patient and public involvement (PPI), where patients, their families, and the public are actively involved as research partners, enhances the relevance, credibility, and impact of stroke-related research. This scoping review, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Scoping Review guidelines, aims to identify and summarize how PPI is currently implemented and reported in empirical stroke research using a participatory approach. A comprehensive search strategy was developed and implemented across Medline, CINAHL, EMBASE, PsynchINFO, and Cochrane electronic databases, supplemented by gray literature searches. Empirical stroke research articles in the English language, published from 2014 up to 2023, and documenting PPI activity were included. Of the 18,143 original articles identified, 2824 full-text manuscripts matching from this time window were screened. Only 2% (n = 72) of these directly reported embedded PPI activity in empirical research. The majority were qualitative in design (60%) and conducted in high-income countries (96%). Only one included study originated from a developing country, where the burden of stroke is highest. Most studies (94%) provided some information about the activities carried out with their PPI partners, mainly centered on the study design (57%) and management (64%), with only 4% of studies integrating PPI across all research cycle phases from funding application to dissemination. When studies were examined for compliance with the Guidance for Reporting Involvement of Patients and the Public (GRIPP) short-form checklist, only 11% of included studies were 100% compliant. Twenty-one studies (29%) reported barriers and facilitators to including PPI in stroke research. Organization, authentic partnership, and experienced PPI representatives were common facilitators and identified barriers reflected concerns around adequate funding, time required, and diversity in perspectives. A positive reporting bias for PPI impact was observed, summarized as keeping the patient perspective central to the research process, improved care of study participants, validation of study findings, and improved communication/lay-summaries of complex research concepts. PPI is underutilized and inconsistently reported in current empirical stroke research. PPI must become more widely adopted, notably in low- and middle-income countries. Consensus-driven standards for inclusion of PPI by funding organizations and publishers are required to support its widespread adoption.

The cultural safety of research reports on primary healthcare use by Indigenous Peoples: a systematic review

IntroductionCommunity-driven research in primary healthcare (PHC) may reduce the chronic disease burden in Indigenous peoples. This systematic review assessed the cultural safety of reports of research on PHC use by Indigenous peoples from four countries with similar colonial histories.MethodsMedline, CINAHL and Embase were all systematically searched from 1st January 2002 to 4th April 2023. Papers were included if they were original studies, published in English and included data (quantitative, qualitative and/or mixed methods) on primary healthcare use for chronic disease (chronic kidney disease, cardiovascular disease and/or diabetes mellitus) by Indigenous Peoples from Western colonial countries. Study screening and data extraction were undertaken independently by two authors, at least one of whom was Indigenous. The baseline characteristics of the papers were analyzed using descriptive statistics. Aspects of cultural safety of the research papers were assessed using two quality appraisal tools: the CONSIDER tool and the CREATE tool (subset analysis). This systematic review was conducted in accordance with the Assessing the Methodological Quality of Systematic Reviews (AMSTAR) tool.ResultsWe identified 35 papers from Australia, New Zealand, Canada, and the United States. Most papers were quantitative (n = 21) and included data on 42,438 people. Cultural safety across the included papers varied significantly with gaps in adequate reporting of research partnerships, provision of clear collective consent from participants and Indigenous research governance throughout the research process, particularly in dissemination. The majority of the papers (94%, 33/35) stated that research aims emerged from communities or empirical evidence. We also found that 71.4% (25/35) of papers reported of using strengths-based approaches by considering the impacts of colonization on reduced primary healthcare access.ConclusionResearch on Indigenous PHC use should adopt more culturally safe ways of providing care and producing research outputs which are relevant to community needs by privileging Indigenous voices throughout the research process including dissemination. Indigenous stakeholders should participate more formally and explicitly throughout the process to guide research practices, inclusive of Indigenous values and community needs.

Critical climate awareness as a science education outcome

AbstractThis paper presents the argument that climate change should be taught in schools as a sociopolitical and scientific process, and that students should be able to use their science knowledge to think critically about climate change as a social justice issue. A necessary and achievable outcome of science education is critical climate awareness—an understanding of the systems and structures that create and sustain climate change inequities. Through a participatory design research partnership, a high school chemistry course was designed and studied that focused on this outcome. Data from a single group, mixed method pre/postdesign show how a group of Black and Latinx urban youth appropriated critical climate awareness from the curriculum they experienced and how they used this awareness to explain climate change as a scientific and sociopolitical process. The findings show that students became concerned about climate change, if they were not already, and that they improved their knowledge of scientific concepts specific to climate change. In their explanations of climate change, students foregrounded sociopolitical processes that result in changes to physical systems, assigned agency for carbon emissions to diverse social actors in ways attentive to power dynamics, and articulated differences in consequences and solutions based on the racial and socioeconomic demographics of communities. This work has implications for transforming science classrooms into incubators for climate justice.

“Showing Up for Each Other”: Designing Community and Living Solidarities with Families

Despite the colonizing dynamics of educational institutions and the extractive research paradigms of academia, we argue that family- and community-centered research partnerships can foster collective care, cross-racial solidarities, and more just educational ecosystems. Drawing from a long-term community research collaboration, the authors (a university professor and community-based organizational leader) offer three grounded examples of our efforts to live cross-racial solidarities and realize healing and transformation with parent leaders and educators in perilous times.

Facing power: navigating power dynamics in a youth participatory action research project situated within a healthcare setting

ABSTRACT Youth Participatory Action Research (YPAR) is oftentimes cited as a method guided by social justice principles to uplift youth voice and pursue youth priorities in research. However, to uphold these principles, YPAR researchers must address how youth and adults alike negotiate power differentials to be equal partners in research and scholarship. We explore YPAR power sharing through a reflexive thematic analysis of in-depth, semi-structured interviews (n = 42) and focus groups (n = 2) conducted at three timepoints (baseline, mid-point, and exit) with youth (n = 8) and adult (n = 6) researchers engaged in a YPAR exploring health equity at a large, safety-net hospital. Our analyses suggest that both youth and adult researchers negotiate power dynamics in a YPAR at every stage of the project. YPAR researchers made four recommendations to negotiate power: 1) preserve time for relationship building, 2) structure group expectations, 3) require training for adults working with youth of color, and 4) designate youth-only spaces. This study provides an in-depth analysis of youth and adult reflections on power across a YPAR project. Our findings indicate that YPAR requires significant investment in resources, including time to reflect on and process power, transparent and structured expectations, and ongoing training to uphold principles of YPAR.

Strengthening Collaborative Community and Research Partnership Decision-Making Processes to Achieve Health Equity

Collaborative community and academic partner decision-making is imperative for efforts to reduce structural racism and achieve health equity. It is essential to intentionally integrate methods and tools that will help ensure efficient, collaborative, and clear decision-making among community and research partners. The RAPID® decision-making framework is one of these tools, and it is an acronym that stands for Recommend, Agree, Perform, Input, and Decide. RAPID® assigns roles in the decision-making process to explicitly clarify who provides input or feedback on a decision, who decides, and who implements the decision. The RAPID® allows diverse, vital partners to share their expertise and provide direction at critical moments during the research process. This collaborative process activates community power and ensures that the research questions will benefit the communities we seek to serve. Our brief details a case example of how we used the RAPID® to co-create and revise data collection protocols and instruments for a research project to understand how community benefits agreements disrupt the pathways from residential segregation to health disparities in disinvested communities. We will share what we learned from implementing the RAPID® and recommendations for future adoption

Harnessing Community Coalition Action Theory (CCAT) for Building Resilient Communities: A Case Study of the NV Minority Health and Equity Coalition

Developing sustainable research and health equity partnerships is crucial for creating long-term solutions that address systemic disparities and improve community well-being. Coalition building, a fundamental strategy in this process, unites diverse stakeholders to collaborate on shared goals, amplifying collective impact. The importance of such an approach led to the development of the Nevada Minority Health and Equity Coalition (NMHEC). This study aims to achieve two primary objectives: first, to identify and integrate networked resources into the community coalition action theory (CCAT) framework to advance an understanding of community resilience; second, to share NMHEC strategies that incorporate community participation within each CCAT construct. The article outlines a generalizable process for establishing a robust health equity coalition through a community-based participatory research (CBPR) approach framed by CCAT and Community Resilience Theory (CR) principles. Documenting the narrative, facilitators, and barriers through an analysis of archival documents — including coalition recruitment materials, meeting minutes, and partnership and event evaluations — the study maps activities and resources to CCAT constructs. Findings highlight six foundational areas of NMHEC operations: 1) aligning fiscal agency with the coalition’s mission and vision; 2) implementing tiered membership to ensure participation equity; 3) co-developing operational norms to shape culture and interactions; 4) building capacity based on member feedback to assess available skills and resources; 5) sharing resources such as grant awards and staff time with coalition partners; and 6) seeking external advice from national experts to learn from other partnerships. This application of CCAT, CR, and CBPR illustrates effective strategies for fostering, maintaining, and sustaining partnerships to address health inequities.

Advancing Parent and Newborn Health Outcomes Through Community-Based Collaboration: A Somerville-Tufts University Partnership

This manuscript is based on Project INSPIRE: Improving New Somerville Parent & Infant Resiliency & Engagement, a healthcare and early childcare sector collaboration between: 1) the Center for Black Maternal Health and Reproductive Justice (CBMHRJ) at Tufts University School of Medicine in Boston, Massachusetts; 2) MARCH: Maternal Advocacy and Research for Community Health at Tufts University in Medford, Massachusetts; and 3) SomerBaby, an early childhood home-visiting and parental support program through Somerville Public Schools in Somerville, Massachusetts. To address Somerville immigrant parental health gaps in the literature, we convened a Parent Advisory Board (PAB), co-created a novel health needs assessment survey in English, Spanish, and Portuguese, and distributed this survey both through home visits by SomerBaby interpreters as well as online for all Somerville parents of children three years old or younger. In this manuscript, we focus on topics related to the overall methodology of this project, including study conceptualization, lessons learned in community-engaged parental health research, and recommendations for academic-community research partnerships in pursuit of Black and Brown maternal health equity.

Research About Us, With Us: An Inclusive Research Case Study.

Inclusive research combines the expertise of academically trained researchers with the lived experience of individuals with disabilities to render results that are more accessible, accountable, and meaningful to the disability community. In this case study, adults with intellectual and developmental disabilities (IDD) contributed as co-researchers to a series of studies on mental health of adults with intellectual disability. The research model, specific engagement strategies, and lessons learned are shared. Feedback from members of the research team suggests that including adults with IDD as co-researchers benefited investigators, co-researchers with IDD, and project outcomes. Our case study emphasizes the valuable contributions of research partners with IDD and provides a model that may be adapted and utilized by researchers to enhance their practice.

True Echoes

This article describes True Echoes, a three-year project initiated by the British Library to research its Oceanic wax cylinder collections and to reconnect digitised sound recordings with their originating communities. These collections, recorded in the late nineteenth and early twentieth centuries, comprise some of the earliest recordings of Pacific cultures and histories and represent the early use of sound recording for European anthropological research in the region. The recordings were made in Papua New Guinea,Vanuatu, Solomon Islands, New Caledonia, and the Torres Strait Islands of Australia. They, along with the British Library’s wider collection of ethnographic cylinders, were added to UNESCO’s Memory of the World Register in 2011.This article concentrates on some of the earliest recordings, 102 wax cylinders of the Alfred Cort Haddon 1898 Expedition (Torres Strait and British New Guinea) Cylinder Collection (C80). The collection also contains 39 cylinders recorded in Papua New Guinea, which will not be discussed here. Research methods involved historical research in partnership with Oceanic cultural institutions and participatory research with community members, which provided local knowledge and new information. The “multi-perspectivist approach” employed by the project team was important for gathering a variety of perspectives on the collections and for revealing “the complex processes involved in their production, collection and interpretation”.

Reflections on the Collaborative Story Analysis Method to Understand Qualitative Perspectives of Indigenous Syringe Services Program Clients

Many scholars have cautioned that the use of Western research methods is problematic in studies with Indigenous communities given colonialist histories that have exploited Indigenous populations. One solution has been to utilize a Community-Based Participatory Research (CBPR) approach to enhance equity in research partnerships. Employing a CBPR approach, however, does not necessitate the inclusion of Indigenous Research Methods, an additional step that can further benefit studies with their explicit alignment with Indigenous worldviews and values. In a CBPR project aiming to understand Indigenous harm reduction clients' perspectives of barriers and facilitators to opioid use disorder treatment, our research group assembled a multidisciplinary qualitative data analysis team that included diverse tribal community members and academics. Sparse literature was available to guide the use of Indigenous Research Methods for the qualitative data analysis phase of the research. To address this gap, the aims of this process paper are: (1) to describe the implementation of the Collaborative Story Analysis method, and (2) in the Indigenous tradition of honoring and sharing stories, describe our analysis team's experiences and perceptions of implementing this Indigenous Research Method. Through a series of process discussions, the analysis team found that applying the Collaborative Story Analysis method: (1) honored relationships and story, (2) strengthened the depth of analysis, and (3) exhibited tensions when working in a dominant Western culture. Through sharing our team's experiences, the aspiration is that others can use these insights in their own consideration and implementation of an Indigenous Research Method for qualitative data analysis.

Innovating visitor research within museums: Concepts, tools and practices

Increasing demands on museums for visitor insights, theoretical shifts in the learning sciences, the embeddedness of multimodal media in museums and society, and advancements in data visualisation tools and web-based applications are all clear calls for innovating visitor research in museums. In this article, I describe how concepts from multimodal and sociocultural research help shift the analytical lens for understanding and studying connections between visitor behaviours, social interactions and engagement in exhibitions. The following question is explored: In which ways can multimodal theory and the learning sciences inform the design and use of new visitor research tools and methods that are relevant for museum practice? A case study from a university-museum research partnership illustrates how multimodal and sociocultural perspectives from the humanities and learning sciences, respectively, merged in the development of a new tool to enhance and innovate visitor research within museums.

Challenges and Opportunities with Antibiotic Discovery and Exploratory Research.

Discovery and exploratory research can identify new antibiotics and biological targets. However, failure rates are high, and funding is insufficient to solve the scientific challenges and attract researchers to antibacterial R&D. Novel methods, including artificial intelligence, have been applied to early-stage research, but these have yet to deliver new antibiotics. The Global Antibiotic Research & Development Partnership (GARDP) is investing in discovery and exploratory research and an R&D education and outreach program. GARDP's efforts, including application of novel R&D methods and new global networks of R&D researchers to develop new antibiotics, is helping address antimicrobial resistance sustainably over the long-term.

“I Have Been Getting Involved for My Children:” An Un/documented Latina Mother’s Immigrant Rights Practice as Family Engagement

This study examines the immigrant rights practices of one un/documented Latina mother who organizes with her children for immigrant rights in Philadelphia, Pennsylvania. Findings show the ways she conceptualizes her immigrant rights organizing as parental engagement in her children’s education. Implications highlight the need for education practitioners/scholars to include community organizing in their understanding of what counts as family/parental engagement in/out of schools, and to work with immigrant families as practice, policy, and research partners.