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Participatory research in health promotion: a critical review and illustration of rationales.

ABSTRACT: In health promotion research, enthusiasm for patient and public involvement (PPI) is growing. However, a lack of conceptual clarity leads to ambiguities in participatory processes and purposes, and hampers efforts to achieve and evaluate PPI in research. This study provides an overview of its underlying reasons-or rationales-so as to better understand, guide and interpret PPI in research practice. We conducted a critical review to identify typologies of rationales for PPI. We re-categorized the different types of rationales from these typologies based on their content. We illustrated the resulting categories of rationales with examples from a case study on PPI in research on Lyme disease. Five categories of rationales for PPI were identified. The democratic rationale reflects the normative right of citizens to have a voice in research. The consumerist rationale refers to the economic right of stakeholders with interests to have a say. Rooted in social justice, the transformative rationale seeks to empower marginalized groups. The substantive rationale starts from epistemic considerations and aims to improve the quality of knowledge that research generates. The instrumental rationale is of pragmatic origin and refers to improved efficiency and effectiveness of the research. Our overview of categories of rationales can be used as a frame of reference for PPI in health promotion research. Exploring, stating explicitly and reflecting on the underlying reasons for PPI may help to define realistic purposes, select matching approaches and design appropriate evaluation studies. This might also contribute to the conceptualization of PPI.

SUBMITTER: Harting J

PROVIDER: S-EPMC9226656 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundEnvironmental health risks are disproportionately colocated with communities in poverty and communities of color. In some cases, participatory research projects have effectively addressed structural causes of health risk in environmental justice (EJ) communities. However, many such projects fail to catalyze change at a structural level.ObjectivesThis review employs Critical Interpretive Synthesis (CIS) to theorize specific elements of participatory research for environmental health that effectively prompt structural change in EJ communities.MethodsAcademic database search was used to identify peer-reviewed literature describing participatory research with EJ communities to address environmental health. Synthetic constructs were developed iteratively related to study characteristics, design elements, and outcomes; and data were extracted for included records. Statistical analyses were performed to assess correlations between study design elements and structural change outcomes. Through critical, comparative, and contextual analyses of the "structural change" case study group and "non- structural change" group, informed by relevant theoretical literature, a synthesizing argument was generated.ResultsFrom 505 total records identified, eligibility screening produced 232 case study articles, representing 154 case studies, and 55 theoretical articles for synthesis. Twenty-six case studies resulted in a structural change outcome. The synthesizing argument states that participatory research with EJ communities may be more likely to result in structural change when a) community members hold formal leadership roles; b) project design includes decision-makers and policy goals; and c) long term partnerships are sustained through multiple funding mechanisms. The assumption of EJ community benefit through research participation is critically examined.DiscussionRecommended future directions include establishing structural change as a goal of participatory research, employing participatory assessment of community benefit, and increased hiring of faculty of color at research institutions. The power, privilege, and political influence that academic institutions are able to leverage in partnership with EJ communities may be as valuable as the research itself. https://doi.org/10.1289/EHP6274.

Project description:BackgroundThe World Health Organization recommends the development of participatory sexuality education. In health promotion, web-based participatory interventions have great potential in view of the internet's popularity among young people.ObjectiveThe aim of this review is to describe existing published studies on online participatory intervention methods used to promote the sexual health of adolescents and young adults.MethodsWe conducted a systematic review based on international scientific and grey literature. We used the PubMed search engine and Aurore database for the search. Articles were included if they reported studies on participatory intervention, included the theme of sexual health, were conducted on the internet (website, social media, online gaming system), targeted populations aged between 10 and 24 years, and had design, implementation, and evaluation methods available. We analyzed the intervention content, study implementation, and evaluation methods for all selected articles.ResultsA total of 60 articles were included, which described 37 interventions; several articles were published about the same intervention. Process results were published in many articles (n=40), in contrast to effectiveness results (n=23). Many of the 37 interventions were developed on websites (n=20). The second most used medium is online social networks (n=13), with Facebook dominating this group (n=8). Online peer interaction is the most common participatory component promoted by interventions (n=23), followed by interaction with a professional (n=16). Another participatory component is game-type activity (n=10). Videos were broadcast for more than half of the interventions (n=20). In total, 43% (n=16) of the interventions were based on a theoretical model, with many using the Information-Motivation-Behavioral Skills model (n=7). Less than half of the interventions have been evaluated for effectiveness (n=17), while one-third (n=12) reported plans to do so and one-fifth (n=8) did not indicate any plan for effectiveness evaluation. The randomized controlled trial is the most widely used study design (n=16). Among the outcomes (evaluated or planned for evaluation), sexual behaviors are the most evaluated (n=14), followed by condom use (n=11), and sexual health knowledge (n=8).ConclusionsParticipatory online interventions for young people's sexual health have shown their feasibility, practical interest, and attractiveness, but their effectiveness has not yet been sufficiently evaluated. Online peer interaction, the major participatory component, is not sufficiently conceptualized and defined as a determinant of change or theoretical model component. One potential development would be to build a conceptual model integrating online peer interaction and support as a component.

Project description:BackgroundThere is a complicated and exploitative history of research with Indigenous peoples and accompanying calls to meaningfully and respectfully include Indigenous knowledge in healthcare. Storytelling approaches that privilege Indigenous voices can be a useful tool to break the hold that Western worldviews have within the research. Our collaborative team of Indigenous and non-Indigenous researchers, and Indigenous patients, Elders, healthcare providers, and administrators, will conduct a critical participatory, scoping review to identify and examine how storytelling has been used as a method in Indigenous health research.MethodsGuided by two-eyed seeing, we will use Bassett and McGibbon's adaption of Arksey and O'Malley's scoping review methodology. Relevant articles will be identified through a systematic search of the gray literature, core Indigenous health journals, and online databases including Scopus, MEDLINE, Embase, CINAHL, AgeLine, Academic Search Complete, Bibliography of Native North Americans, Canadian Reference Centre, and PsycINFO. Qualitative and mixed-methods research articles will be included if the researchers involved Indigenous participants or their healthcare professionals living in Turtle Island (i.e., Canada and the USA), Australia, or Aotearoa (New Zealand); use storytelling as a research method; focus on healthcare phenomena; and are written in English. Two reviewers will independently screen titles/abstracts and full-text articles. We will extract data, identify the array of storytelling approaches, and critically examine how storytelling was valued and used. An intensive collaboration will be woven throughout all review stages as academic researchers co-create this work with Indigenous patients, Elders, healthcare professionals, and administrators. Participatory strategies will include four relational gatherings throughout the project. Based on our findings, we will co-create a framework to guide the respectful use of storytelling as a method in Indigenous health research involving Indigenous and non-Indigenous peoples.DiscussionThis work will enable us to elucidate the extent, range, and nature of storytelling within Indigenous health research, to critically reflect on how it has been and could be used, and to develop guidance for the respectful use of this method within research that involves Indigenous peoples and settlers. Our findings will enable the advancement of storytelling methods which meaningfully include Indigenous perspectives, practices, and priorities to benefit the health and wellbeing of Indigenous communities.Systematic review protocol registrationOpen Science Framework ( https://osf.io/rvf7q ).

Project description:BackgroundThere 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.MethodsThis 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.ResultsBased 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.ConclusionsFindings 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.

Project description:The progressive aging of the population is a socio-demographic phenomenon experienced by most countries in the world in recent decades, especially in Japan and in many European Union countries. During this process, so-called "geriatric syndromes" frequently occur. The focus of this study is the quality of life of the elderly in relation to these 3 factors: risk of falls, urinary incontinence, and insomnia.The main purpose is to determine the impact of a multifactorial intervention program implemented with institutionalized elderly people. The program is focused on the treatment of the aforementioned factors.The study will be carried out with elderly people living in three residences for the elderly in A Coruña Province (Galicia, Spain).It is a prospective and longitudinal study, with a temporary series design of a "quasi-experimental" type that evaluates the effect of an intervention in 1 given population by doing assessments pre- and post-intervention, but there is no comparison with a control group.The intervention will be based on a multifactorial program, including the following phases: the use of wearable devices (wearable fitness trackers to register physical activity and sleep), the use of an App on a Tablet to record the participants' occupations and activities, counseling about performance in activities of daily living, the implementation of a physical activity program, and the treatment of the pelvic floor (according to each research line). The Quality of Life (QoL) will be assessed before and after the intervention, with the use of the questionnaire EuroQol-5D-5L. Data analysis will be applied with all registered variables through a quantitative perspective.The protocol has been approved by the host institution's ethics committee (Research Ethics Committee of Galicia) under the number 2017/106. Results will be disseminated via peer-reviewed journal articles and conferences. This clinical trial is registered at ClinicalTrials.gov identifier: NCT03504813.

Project description:IntroductionA 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 analysisThis 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 disseminationEthics 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.

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Participatory research in health promotion: a critical review and illustration of rationales.

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