Antecedents and Consequences of Health Literacy among Refugees and Migrants during the First Two Years of COVID-19: A Scoping Review.

Supporting refugee and migrant health has become a critical focus of healthcare policy. Developing and designing health literacy interventions that meet the needs of refugees and migrants is core to achieving this objective. This literature review sought to identify antecedents and consequences of health literacy among refugees and migrants during the first two years of the COVID-19 pandemic. We systematically searched nine electronic databases and numerous grey literature sources to identify studies published between December 2019 and March 2022. The antecedents (societal and environmental determinants, situational determinants, and personal determinants) and consequences of health literacy among refugees and migrants were mapped to a validated integrated health literacy model. Social and environmental determinants (n = 35) were the most reported antecedent influencing health literacy among refugees and migrants during the first two years of COVID-19. Language (n = 26) and culture (n = 16) were these determinants' most frequently reported aspects. Situational determinants (n = 24) and personal determinants (n = 26) were less frequently identified factors influencing health literacy among refugees and migrants. Literacy (n = 11) and socioeconomic status (n = 8) were the most frequently reported aspects of personal determinants. Media use (n = 9) and family and peer influence (n = 7) were the most cited situational determinants reported. Refugees and migrants with higher levels of health literacy were more likely to use healthcare services, resulting in better health outcomes. The findings of this review reveal personal and situational factors that impacted health literacy among refugees and migrants during COVID-19 that require attention. However, the inadequate adaptation of health literacy interventions for linguistic and cultural diversity was a greater problem. Attention to this well-known aspect of public health preparedness and tailoring health literacy interventions to the needs of refugees and migrants during pandemics and other public health emergencies are paramount.

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).

Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review.

OBJECTIVES: The objectives of this scoping review are to: (1) identify the distribution of and context of the recruitment strategies used, (2) explore the facilitators, benefits, barriers and ethical issues of the identified recruitment strategies, (3) distinguish the varying terminology for involvement (ie, panels, boards, individual) and (4) determine if the individual recruitment strategies used were to address issues of representation or bias. DESIGN: A scoping review. SETTING: This scoping review follows the framework by Peters et al. Seven electronic databases were explored including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library and PsycINFO (conducted July 2021). The search strategy was codeveloped among the research team, PPI research experts and a faculty librarian. Two independent reviewers screened articles by title and abstract and then at full text based on predetermined criteria. PRIMARY AND SECONDARY OUTCOME MEASURES: Explore recruitment strategies used, facilitators, benefits, barriers and ethical issues of the identified recruitment strategies. Identify terminology for involvement. Explore recruitment strategies used to address issues of representation or bias. RESULTS: The final sample was from 51 sources. A large portion of the extracted empirical literature had a clinical focus (37%, n=13) but was not a randomised control trial. The most common recruitment strategies used were human networks (78%, n=40), such as word of mouth, foundation affiliation, existing networks, clinics or personal contacts. Within the reviewed literature, there was a lack of discussion pertaining to facilitators, benefits, barriers and ethical considerations of recruitment strategies was apparent. Finally, 41% (n=21) of studies employed or proposed recruitment strategies or considerations to address issues of representation or bias. CONCLUSION: We conclude with four key recommendations that researchers can use to better understand appropriate routes to meaningfully involve patients, carers and members of the public to cocreate the evidence informing their care.

Developing practice standards for engaging people living with dementia in product design, testing, and commercialization - a case study.

To successfully create assistive technologies for persons with dementia, product developers must understand the capacity of people with dementia to use these technologies. Capacity assessment is typically done through user experience research. However, the published literature is bereft of guidelines to conduct optimal user experience research in samples of persons with dementia. We recruited persons with dementia from community-based organizations and private partners to participate in user experience research for an assistive technology platform. After a testing session, we used semi-structured interviews to ask participants about their involvement in the user experience process. We employed an inductive thematic approach to analyze the interview transcripts and draft guidelines to meaningfully engage persons with dementia in user experience research in the future. Ten participants with mild to moderate dementia (6 females, 4 males) participated in the study. Nine participants had previous experience with mobile devices. Thematic analysis yielded three overarching themes: 1) the techniques, approaches and attributes of the interviewer; 2) participants' views on being part of the user experience research process; and 3) specific items to optimize the research process. Resulting guidelines were divided into recommendations for the interviewer specifically, and for the broader research process.

The public and patient involvement imperative in Ireland: Building on policy drivers.

What can we learn from the history of Public and Patient Involvement (PPI) in healthcare and research across global jurisdictions? Depending on region and context, the terminology and heritage of involvement in research vary. In this paper, we draw on global traditions to explore dominant themes and key considerations and critiques pertaining to PPI in order to inform a PPI culture shift in Ireland. We then describe the heritage of PPI in Ireland and present the case for combining methodological imperatives with policy drivers to support and encourage meaningful involvement. Specifically, we propose that PPI can be enriched by the theory and processes of participatory health research (PHR); and that implementation requires concurrent capacity building. We conclude with a call for Irish researchers (authors of this paper included) to consider the conceptual complexities and nuances of a participatory approach to build on the policy imperatives driving PPI and to contribute to the international evidence base and research culture. Specifically, we call for Irish health researchers and funders to consider and reflect on: (1) the rich literature of PHR as a resource for enacting meaningful PPI; (2) the roots and origins of varying participatory health research methods; (3) how community/patient groups can lead health research; and (4) co-learning and partnership synergy to create space for both academic and community expertise; and (5) the importance of using standardized reporting tools.

Building capacity for integrated knowledge translation: a description of what we can learn from trainees' experiences during the COVID-19 pandemic.

The use of collaborative health research approaches, such as integrated knowledge translation (IKT), was challenged during the COVID-19 pandemic due to physical distancing measures and transition to virtual platforms. As IKT trainees (i.e. graduate students, postdoctoral scholars) within the Integrated Knowledge Translation Research Network (IKTRN), we experienced several changes and adaptations to our daily routine, work and research environments due to the rapid transition to virtual platforms. While there was an increased capacity to communicate at local, national and international levels, gaps in equitable access to training and partnership opportunities at universities and organizations have emerged. This essay explores the experiences and reflections of 16 IKTRN trainees during the first 2 years of the COVID-19 pandemic at the micro (individual), meso (organizational) and macro (system) levels. The micro level, or individual experiences, focuses on topics of self-care (taking care of oneself for physical and mental well-being), maintaining research activities and productivity, and leisure (social engagement and taking time for oneself), while conducting IKT research during the pandemic. At the meso level, the role of programmes and organizations explores whether and how institutions were able to adapt and continue research and/or partnerships during the pandemic. At the macro level, we discuss implications for policies to support IKT trainees and research, during and beyond emergency situations. Themes were identified that intersected across all levels, which included (i) equitable access to training and partnerships; (ii) capacity for reflexivity; (iii) embracing changing opportunities; and (iv) strengthening collaborative relationships. These intersecting themes represent ways of encouraging sustainable and equitable improvements towards establishing and maintaining collaborative health research approaches. This essay is a summary of our collective experiences and aims to provide suggestions on how organizations and universities can support future trainees conducting collaborative research. Thus, we hope to inform more equitable and sustainable collaborative health research approaches and training in the post-pandemic era.

Exploring the Multidimensionality of Trust in Participatory Health Partnerships - A Network Approach.

Introduction: Previous studies have identified "trust" as a key mechanism to achieve sustainable partnerships in participatory health research, which themselves can represent social networks. A recent review discussed the potential for social network analysis to investigate the development and maintenance of trust and its effects on partnership functioning in participatory health research partnerships. This review also recommended considering a comprehensive, nuanced and multidimensional approach to conceptualizing, operationalizing and measuring trust in research partnerships. Thus, this study aims to explore empirically the conceptualizing, operationalizing and measuring of trust in a multidimensional manner, approaching each trust dimension as an individual trust network, as well as combined as an overall trust network. Methods: We sampled the whole network, recruiting from a newly established network of 57 individuals that must collaborate to achieve a common goal. These individuals represented academic, service and community organizations of an existing participatory partnership, the Public and Patient Involvement Ignite Network in Ireland. Of the 57 individuals invited to take part in the study, 75% (n = 43) individuals completed the network survey. A survey about trust was designed based on literature in the area and was administered via Qualtrics. The survey included eight network questions: one on collaboration, and seven on specific dimensions of trust. From this, we constructed a network for each trust dimension. We compared several core network measures of each to identify structural differences between the dimensions of trust. To statistically validate them, we compared them to a random and preferential null model. Results: All the networks had a high reciprocity but were decentralized. Key differences were identified across trust dimensions, particularly in terms of integrity and shared values, visions and goals. None of the networks compared well to the null models indicating participants did not randomly or preferentially (based on how much trust they receive for a particular trust dimension) trust other partners. Discussion/Conclusion: This novel empirical social network analysis of trust in a real-world partnership elucidates the nuances and multidimensional nature of trust. This provides support for expanding this research direction to enhance understanding of and interventions for trust in participatory health research.

Exploring how patients, carers and members of the public are recruited to advisory boards, groups and panels as partners in public and patient involved health research: a scoping review protocol.

INTRODUCTION: Engaging patients, carers and members of the public in health research has become widely recognised as an important approach for bridging the gap between research, and health and social care by increasing the relevance of research for those who benefit from its findings. Specific approaches to engagement vary, but commonly include advisory boards, groups or patient panels that are active throughout all stages of research. The breadth of and optimal strategies for recruiting patients, carers and members of the public to such boards, groups or panels remains unclear. The objective of this manuscript is to identify the breadth of and optimal strategies used to recruit patients, carers and members of the public to advisory boards, groups or panels, within public and patient involvement (PPI) research. METHODS AND ANALYSIS: This review follows the scoping review framework by Peters et al, an elaboration on the framework by Arksey and O'Malley. The search strategy was co-developed among the research team, PPI research experts and a faculty librarian. The review will take place between July 2021 and June 2022. In July and August 2021, eight electronic databases, MEDLINE (PubMed), MEDLINE (OVID), Embase, CINAHL, PsychINFO, Scopus, Web of Science and Cochrane Library, will be explored to capture all available literature. Two independent reviewers will screen articles by title and abstract and then at full text based on predetermined criteria. The data will be presented in a tabular format with a narrative summary discussing how the research findings relate to the overarching research question. A thematic analysis will also be completed using qualitative description, identifying key themes and gaps in the literature. ETHICS AND DISSEMINATION: Ethics is not required for this review. We aim to disseminate the information gathered through presentations at academic conferences, peer-reviewed publications and consultations with lay audiences.

Conceptualising, operationalising, and measuring trust in participatory health research networks: a scoping review.

BACKGROUND: There are many described benefits of community-based participatory research (CBPR), such as increased relevance of research for those who must act on its findings. This has prompted researchers to better understand how CBPR functions to achieve these benefits through building sustainable research partnerships. Several studies have identified "trust" as a key mechanism to achieve sustainable partnerships, which themselves constitute social networks. Although existing literature discusses trust and CBPR, or trust and social networks, preliminary searches reveal that none link all three concepts of trust, CBPR, and social networks. Thus, we present our scoping review to systematically review and synthesize the literature exploring how trust is conceptualised, operationalised, and measured in CBPR and social networks. METHODS: This review follows the guidance and framework of Peters et al. which is underpinned by the widely used framework of Levac and colleagues. Levac and colleagues provided enhancements to the methodological framework of Arksey and O'Malley. We explored several electronic databases including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library, Google Scholar, and PsychINFO. A search strategy was identified and agreed upon by the team in conjunction with a research librarian. Two independent reviewers screened articles by title and abstract, then by full-text based on pre-determined exclusion/inclusion criteria. A third reviewer arbitrated discrepancies regarding inclusions/exclusions. A thematic analysis was then conducted to identify relevant themes and sub-themes. RESULTS: Based on the 26 extracted references, several key themes and sub-themes were identified which highlighted the complexity and multidimensionality of trust as a concept. Our analysis revealed an additional emergent category that highlighted another important dimension of trust-outcomes pertaining to trust. Further, variation within how the studies conceptualised, operationalised, and measured trust was illuminated. Finally, the multidimensionality of trust provided important insight into how trust operates as a context, mechanism, and outcome. CONCLUSIONS: Findings provide support for future research to incorporate trust as a lens to explore the social-relational aspects of partnerships and the scope to develop interventions to support trust in partnerships.

Perceived susceptibility to developing cancer and screening for colorectal and prostate cancer: A longitudinal analysis of Alberta's Tomorrow Project.

INTRODUCTION: To assess the association between perceived susceptibility of developing cancer and being screened via sigmoidoscopy/colonoscopy and prostate-specific antigen, respectively. METHODS: Participants aged 35-69, who resided in Alberta, Canada, were enrolled into the study between 2000 and 2008. We used general linear mixed models, adjusted for age, marital status, work status, education, family history and place of residence, to explore the association. RESULTS: Perceived susceptibility of developing cancer was associated with both screening tests at baseline and a maximum of 14-year follow-up: (i) colorectal cancer screening - adjusted odds ratios were 1.97 (95% CI = 1.52-2.55) per one-unit increase in participants' personal belief in susceptibility to cancer, and 1.03 (95% CI = 1.00-1.04) per one-percent increase in participants' estimate of their own chance of developing cancer; (ii) prostate cancer screening - adjusted odds ratios were 1.36 times greater (95% CI = 1.07-1.72), and 1.02 times higher (95% CI = 1.01-1.03), for each respective perceived susceptibility measure. CONCLUSION: Health promotion can focus on targeting and heightening personal perceived susceptibility of developing cancer in jurisdictions with low screening rates for colorectal or prostate cancer.

Conceptualising, operationalising and measuring trust in participatory health research networks: a scoping review protocol.

INTRODUCTION: A participatory approach to co-creating new knowledge in health research has gained significant momentum in recent decades. This is founded on the described benefits of community-based participatory research (CBPR), such as increased relevance of research for those who must act on its findings. This has prompted researchers to better understand how CBPR functions to achieve these benefits through building sustainable research partnerships. Several studies have identified 'trust' as a key mechanism to achieve sustainable partnerships, which themselves constitute social networks. Although existing literature discuss trust and CBPR, or trust and social networks, preliminary searches reveal that none link all three concepts of trust, CBPR and social networks. Thus, we present our scoping review protocol to systematically review and synthesise the literature exploring how trust is conceptualised, operationalised and measured in CBPR and social networks. METHODS AND ANALYSIS: This protocol follows guidelines from Levac et al (Scoping studies: advancing themethodology. Implement Sci 2010;5:69), which follow the methodological framework of Arksey and O'Malley. This scoping review explores several electronic databases including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library, Google Scholar and PsychINFO. Grey literature such as theses/dissertations and reports will be included. A search strategy was identified and agreed on by the team in conjunction with a research librarian. Two independent reviewers will screen articles by title and abstract, then by full text based on pre-determined exclusion/inclusion criteria. A third reviewer will arbitrate discrepancies regarding inclusions/exclusions. We plan to incorporate a thematic analysis. ETHICS AND DISSEMINATION: Ethics is not required for this review specifically. It is a component of a larger study that received ethical approval from the University of Limerick research ethics committee (#2018_05_12_EHS). Translation of results to key domains is integrated through active collaboration of stakeholders from community, health services and academic sectors. Findings will be disseminated through academic conferences, and peer review publications targeting public and patient involvement in health research.