Community participation in health research: an ethnography from rural Swaziland

2019 ◽  
Vol 35 (1) ◽  
pp. e59-e69 ◽  
Author(s):  
Michelle R Brear ◽  
Karin Hammarberg ◽  
Jane Fisher
Keyword(s):  
Community Participation ◽  
Health Research ◽  
Participant Observation ◽  
Research Participation ◽  
Research Process ◽  
Ethnographic Study ◽  
Community Members ◽  
Research Activities ◽  
Participatory Health Research ◽  
Participation In Research

Summary Community participation in all aspects of health research is widely advocated. However, there is a lack of specificity in reporting what community members actually do, and reported participation is typically limited to discrete research activities. Greater specificity in reporting has potential to clarify how community participation might occur and how it might influence empowerment and research rigour. We conducted an ethnographic study of participatory health research (PHR) in a socio-economically marginalized rural Swazi community. Data about 10 community co-researchers’ participation in research workshops and field work were collected through participant observation over 14 months and analysed using directed content analysis, informed by the Comprehensive Community Participation in Research Framework (CCPRF). The analysis demonstrated that facilitating extensive community participation in PHR is feasible and identified 10 new research process activities in which community members might participate, for inclusion in an expanded CCPRF. We provide examples of how community members might participate in 57/59 expanded CCPRF activities and show that participatory, dialogue-based activities can be effective tools for facilitating research participation in ways that empower individual co-researchers and enhance research rigour. However, our results highlight limitations of community participation related to utilizing research results to inform actions, and empowering communities to control their environments and improve their health.

scholarly journals A Tripartite Knowledge Translation Program: Innovative Patient-Centered Approach to Clinical Research Participation for Individuals with Multiple Sclerosis

2021 ◽  
Vol 2021 ◽  
pp. 1-7
Author(s):  
Aman Saini ◽  
Colleen Cochran ◽  
Audrey Zucker-Levin ◽  
Sarah J. Donkers ◽  
Pawan Kumar ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Knowledge Translation ◽  
Clinical Research ◽  
Research Program ◽  
Research Participation ◽  
Research Process ◽  
Patient Centered ◽  
Research Activities ◽  
Strongly Agree ◽  
Experiential Research

Background. Knowledge translation (KT) models that represent an individual’s perspective are a sign of effective KT. Some common challenges in KT include participant engagement, organization of the team, and time demands of the participants. We implemented a unique tripartite KT program to (1) share current research, (2) inform persons living with multiple sclerosis (pwMS) about the clinical research process, and (3) invite pwMS to immediately participate in clinical research. The primary aim was to determine participants’ perspectives on the value and acceptability of an experiential research program offered at a patient and family educational conference. Methods. A team of researchers identified factors that would impact the logistics of hosting an experiential research program at a conference and designed a unique tripartite KT program. The local multiple sclerosis (MS) society was engaged to select an appropriate location and invite stakeholders to the conference. A survey to determine participants’ perspectives on the value and acceptability of the experiential research program was developed and analyzed. Results. 65 pwMS attended the conference, and 44 (67.7%) participated in the on-site experiential research program. 72.7% of the participants completed the survey, of which 93.8% stated that they strongly agree or agree with the following statements: “Did you feel like participating in research today was a valuable experience to you?” and “Did you feel like you were contributing to MS research?” 100% of the participants agreed or strongly agreed when asked “would you like to see more research activities taking place at these kinds of events?” Conclusions. This paper describes the logistics and challenges of conducting an experiential KT program, which proved to be rewarding for pwMS. The majority of pwMS attending the conference agreed to participate in the on-site experiential research program and an overwhelming majority of participants felt the experience was valuable.

scholarly journals Attitudes towards health research participation: a qualitative study of US Arabs and Chaldeans

2018 ◽  
Vol 36 (3) ◽  
pp. 325-331 ◽  
Author(s):  
Kimberly D Campbell-Voytal ◽  
Kendra L Schwartz ◽  
Hiam Hamade ◽  
Florence J Dallo ◽  
Anne Victoria Neale
Keyword(s):  
Qualitative Study ◽  
Health Research ◽  
Research Participation ◽  
Health Behaviours ◽  
Research Process ◽  
Study Phase ◽  
Personal Factors ◽  
Structured Interviews ◽  
Health Care Environment ◽  
Risks And Benefits

Abstract Background The Arab Muslim and Chaldean Christian American community is unified by language but culturally diverse. Researchers are challenged to engage the Arab/Chaldean community to meet immigrant health needs. Arabs/Chaldeans are identified as white in clinical data sets making it difficult to identify health behaviours and patterns unique to the community. Objectives To explore the views of members of the Arab/Chaldean community, including researchers and the lay public, regarding health research participation and the role of clinicians, researchers and community leaders in the research process. Methods A qualitative study of Arab and Chaldean adults and researchers conducted in a US community with a large Arab/Chaldean population. Five semi-structured focus group discussions were triangulated with five in-depth semi-structured interviews with Arab or Chaldean primary care researchers. Responses were audio-recorded and transcribed verbatim. Transcripts were coded and thematically analysed, and findings confirmed with community representatives. Results Three themes were identified: (i) research expectations: risks and benefits; (ii) health care environment: clinicians as recruiters and (iii) research participations: risks and benefits. Themes captured concerns with social relationships, reputation or trust and the cost and benefit of research participation. In the Arab/Chaldean community, institutional and political fears and distrust are amplified. Respect for physicians, teachers and faith leaders connected with or recruiting for studies enhances likelihood of research participation. Conclusion Clinical researchers should address the cultural and immigration histories of Arab/Chaldean research participants. Studies that maximize trust will minimize participation bias and lay the groundwork for improved health. Institutional, sociocultural and personal factors require a pre-study phase to engage and educate participants.

scholarly journals Improving community participation in clinical and translational research: CTSA Sentinel Network proof of concept study

2020 ◽  
Vol 4 (4) ◽  
pp. 323-330
Author(s):  
Deepthi S. Varma ◽  
Alvin H. Strelnick ◽  
Nancy Bennett ◽  
Patricia Piechowski ◽  
Sergio Aguilar-Gaxiola ◽  
...  
Keyword(s):  
Health Research ◽  
Minority Groups ◽  
Research Participation ◽  
Albert Einstein College ◽  
Community Outreach ◽  
Willingness To Participate ◽  
Community Members ◽  
Sentinel Network ◽  
The University ◽  
Research Studies

AbstractBackground:Research participation by members of racial or ethnic minority groups continues to be less than optimum resulting in difficulties to generalization of research findings. Community-engaged research that relies on a community health worker (CHW) model has been found effective in building trust in the community, thereby motivating people to participate in health research. The Sentinel Network study aimed at testing the feasibility of utilizing the CHW model to link community members to appropriate health research studies at each of the research sites.Methods:The study was conducted at six Clinical and Translational Science Award institutions (N = 2371) across the country; 733 (30.9%) of the participants were from the University of Florida, 525 (22.0%) were from Washington University in St. Louis, 421 (17.8%) were from the University of California, Davis, 288 (12.1%) were from the University of Michigan, Ann Arbor, 250 (10.5%) were from Rochester, and 154 (6.5%) from Albert Einstein College of Medicine. Trained CHWs from each of these sites conducted regular community outreach where they administered a Health Needs Assessment, provided medical and social referrals, and linked to eligible research studies at each of those sites. A 30-day follow-up assessment was developed to track utilization of services satisfaction with the services and research study participation.Results:A large majority of people, especially African Americans, expressed willingness to participate in research studies. The top two health concerns reported by participants were hypertension and diabetes.Conclusion:Findings on the rate of navigation and enrollment in research from this study indicate the effectiveness of a hybrid CHW service and research model of directly engaging community members to encourage people to participate in research.

scholarly journals Community-based participatory health research: principles and practice

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
H Unger
Keyword(s):  
Lived Experience ◽  
Participatory Research ◽  
Health Research ◽  
Community Based Participatory Research ◽  
Active Role ◽  
Research Process ◽  
Community Based ◽  
Research Fields ◽  
Participatory Health Research ◽  
Trust And Reciprocity

Abstract Community-based participatory research (CBPR) is a collaborative approach to research that aims to improve the health of marginalized communities and reduce health disparities. It starts with a topic of concern for the community and involves iterative cycles of action and reflection to initiate change. Community members are involved as partners and trained as peer researchers to take an active role in the research process. Processes of capacity building and empowerment play a prominent role. As a general principle, participatory research does not primarily focus on health problems, but pays at least equal attention to the resources and capacities of communities. It places a strong focus on developing trust and reciprocity in research relationships. Regarding methodology, various empirical research methods are used in CBPR study designs, including qualitative, quantitative, mixed-methods and arts-based methods. Arts-based methods such as photovoice, digital storytelling, mapping and drawings facilitate the expression of lived experience, including sensitive aspects, through creative verbal and non-verbal means. These methods expand the available means of expression and as such are highly valuable in research fields where verbal communication is challenged by language barriers and diverse cultural backgrounds as well as sensitive topics and experiences. Participatory health research has been conducted with diverse migrant and refugee groups internationally. Due to legal and other reasons, refugees may be limited in their capacities for participation. The presentation will discuss the strengths and limitations of CBPR including structural obstacles to equitable partnerships.

scholarly journals Pushing the Limits of Child Participation in Research: Reflections from a Youth-Driven Participatory Action Research (YPAR) Initiative in Uganda

2020 ◽  
Vol 19 ◽  
pp. 160940692095896
Author(s):  
Amy E. Ritterbusch ◽  
Neil Boothby ◽  
Firminus Mugumya ◽  
Joyce Wanican ◽  
Clare Bangirana ◽  
...  
Keyword(s):  
Participant Observation ◽  
Domestic Workers ◽  
Research Process ◽  
Participatory Action ◽  
Child Participation ◽  
Future Child ◽  
Research Initiatives ◽  
Children As Researchers ◽  
Methodological Reflection ◽  
Participation In Research

Background: Violence against children (VAC) in Uganda is recognized as an urgent dilemma; however, most research has been quantitatively oriented and has seldom involved children in the research process. Objective: We discuss what we learned about child participation in the research process as a means of informing ethical praxis in future child- and youth-led research initiatives. As an overarching aim of this paper, we utilize our engagement with YPAR as a springboard to reflect on methodological best practices for VAC research that involve children themselves as part of a movement to democratize the research process. Participants and Setting: The study includes street-connected children (40), sexually exploited children (19) and domestic workers (34) in Kampala. Methods: The YPAR team led participant observation, 52 semi-structured life history interviews, 31 auto-photographic exercises, and 4 focus groups. All data collection, analysis and dissemination activities were led by the YPAR team including four Ugandan street-connected youth between the ages of 16–25 and two Ugandan university-trained youth researchers. Results: The results are framed as a methodological reflection regarding the complexities and transformative potential of including children as researchers in the framework of YPAR. Conclusions: We urge scholars to create spaces for sustainable YPAR movements, both in academic and policy arenas, and to design participatory initiatives that prioritize knowledge produced by and for the improvement of children’s lives globally. We encourage challenging traditional, extractive research practices through participatory approaches that carve out spaces for child participation in research.

scholarly journals Mobilizing hegemonic practices in trajectories of conspicuous resistance

2016 ◽  
Vol 50 (9/10) ◽  
pp. 1629-1651 ◽  
Author(s):  
Elizabeth Mamali ◽  
Peter Nuttall
Keyword(s):  
Participant Observation ◽  
Secondary Data ◽  
Ethnographic Study ◽  
Community Members ◽  
Content Type ◽  
Non Profit ◽  
Community Organisation ◽  
Longitudinal Approach ◽  
Do It Yourself ◽  
Depth Interviews

Purpose Focusing on a community organisation, the purpose of this paper is to unravel the process through which infringing contested practices that threaten or compromise the community’s sense of distinction are transformed into acceptable symbolic markers. Design/methodology/approach An ethnographic study comprising participant observation, in-depth interviews and secondary data was conducted in the context of a non-profit community cinema. Findings Taking a longitudinal approach and drawing from practice theory, this paper outlines how member-driven, customer-driven and necessity-imposed infringing practices settle in new contexts. Further, this paper demonstrates that such practices are filtered in terms of their ideological “fit” with the organisation and are, as a result, rejected, recontextualised or replaced with do-it-yourself alternatives. In this process, authority shifts from the contested practice to community members and eventually to the space as a whole, ensuring the singularisation of the cinema-going experience. Practical implications This paper addresses how the integration of hegemonic practices to an off-the-mainstream experience can provide a differentiation tool, aiding resisting organisations to compensate for their lack of resources. Originality/value While the appropriation practices that communities use to ensure distinction are well documented, there is little understanding of the journey that negatively contested practices undergo in their purification to more community-friendly forms. This paper theorises this journey by outlining how the objects, meanings and doings that comprise hegemonic practices are transformed by and transforming of resisting organisations.

scholarly journals A systematic review of randomized trials for engaging socially disadvantaged groups in health research: A distillation approach

2019 ◽  
Author(s):  
Michael C Mullarkey ◽  
Mallory Dobias ◽  
Alyssa Maron ◽  
Sarah Kate Bearman
Keyword(s):  
Systematic Review ◽  
Community Engagement ◽  
Health Research ◽  
Research Participation ◽  
Research Process ◽  
Targeted Interventions ◽  
Research Engagement ◽  
Disadvantaged Groups ◽  
Socially Disadvantaged ◽  
Engagement Interventions

Research that fails to include sufficient representation from socially disadvantaged groups cannot make strong inferences about those groups. This relative lack of knowledge poses theoretical and clinical problems for health research. More effective community engagement with socially disadvantaged groups is often proposed as a way to increase research engagement. However, community engagement is a heterogeneous construct, including everything from how participants are contacted to whether researchers work with an organization within the community. Further, community engagement efforts vary widely in their effectiveness in recruiting and retaining participants from socially disadvantaged groups. Therefore, some types of community engagement may be more effective than others. We conducted a systematic review of randomized controlled trials attempting to increase recruitment or retention of socially disadvantaged groups. We then applied systematic distillation procedures to examine which components of community engagement interventions were associated with successful recruitment or retention outcomes. Generally, we found research process related variables (e.g. having a systematic contact plan) most frequently differentiated effective vs. ineffective recruitment or retention outcomes. Partial associations between components in effective interventions, including negative associations, were descriptively stronger than partial associations in the ineffective interventions, indicating targeted interventions may be more effective than more generalized interventions. The literature was also relatively sparse and at unclear-to-high-risk for bias. Future pre-registered, research process-oriented, and targeted recruitment and retention interventions may increase the research participation of socially disadvantaged groups in health research.

Making a Difference: Participatory Health Research With Unemployed Citizens and Policymakers

2020 ◽  
Vol 13 (2) ◽  
pp. 200-218
Author(s):  
Barbara C. Groot ◽  
Alie Weerman ◽  
Frederiek Overbeek ◽  
Tineke A. Abma
Keyword(s):  
Health Research ◽  
Social Impact ◽  
Data Gathering ◽  
Primary Source ◽  
Well Being ◽  
Research Process ◽  
Thick Description ◽  
Learning Platform ◽  
Participatory Health Research ◽  
Making A Difference

Qualitative researchers are more and more keen to have social impact and make their research actionable. Participatory health research (PHR) involves people who live in vulnerable situations and fosters collaboration with other stakeholders, including policymakers, to improve the health and well-being of those whose lives are at stake. People who it concerns are engaged in every step of the research process of PHR to make a difference and strive for social change. Qualitative and elicitation methods are often the primary source of data gathering in PHR, and an arts-based approach is a powerful way to engage a salient audience, such as policymakers. This article provides a thick description of a PHR study aiming to create a learning platform for change in service delivery for unemployed people in order to better meet their needs.

scholarly journals Asian Americans are less willing than other racial groups to participate in health research

2019 ◽  
Vol 3 (2-3) ◽  
pp. 90-96
Author(s):  
Yiyang Liu ◽  
Amy Elliott ◽  
Hal Strelnick ◽  
Sergio Aguilar-Gaxiola ◽  
Linda B. Cottler
Keyword(s):  
Ethnic Groups ◽  
Asian Americans ◽  
Health Research ◽  
Research Participation ◽  
Lower Amount ◽  
Racial Groups ◽  
Willingness To Participate ◽  
Community Members ◽  
Study Results ◽  
Racial Ethnic

AbstractBackground:Asian Americans constitute 5% of the U.S. population. Their willingness to participate in research is important to examine because it influences participation rates and the representativeness of study results.Methods:A total of 17,339 community members participated from six diverse Clinical and Translational Award (CTSA) sites. Community members were asked about their willingness to volunteer for eight different types of health research, their expectation of monetary compensation for research participation, their trust in research and researchers, their preferred language to receive health information, and their socio-demographic background. We examined Asian Americans’ willingness to participate in various types of health research studies and compared their perceptions with other racial/ethnic groups (i.e., Asian n = 485; African-American n = 9516; Hispanic/Latino n = 1889; Caucasian n = 4760; and other minority n = 689).Results:Compared to all other racial/ethnic groups, Asian Americans were less willing to participate in all eight types of health research. However, Asian Americans reported a lower amount of fair compensation for research participation than African-Americans and Hispanics/Latinos but were as likely to trust researchers as all other racial/ethnic groups.Conclusion:Asian Americans are less willing to participate in health research than other racial/ethnic groups, and this difference is not due to dissatisfaction with research compensation or lower trust in researchers. Lack of trust in research and language barriers should be addressed to improve representativeness and generalizability of all populations in research.

scholarly journals Community participation in land restoration

2010 ◽  
Vol 122 (2) ◽  
pp. 123
Author(s):  
Deirdre Slattery
Keyword(s):  
Community Participation ◽  
Participant Observation ◽  
Land Restoration ◽  
Community Members ◽  
Community Based ◽  
Landscape Restoration ◽  
North Central ◽  
Group I ◽  
Current Stage

This case study of community participation in a landscape restoration program explores some implications of the Federal Government’s Caring for Our Country Program (CFOC) in Mount Alexander Shire in North Central Victoria. It briefly describes the process of establishing a community-based wide-ranging program of landscape restoration, Connecting Country, from its inception in 2007 to its current stage: implementation of a detailed program. As a member of the Connecting Country group, I used participant observation techniques to examine issues and concerns worked through in this process by community members. Background literature about community participation in Landcare programs since 1989 provides the setting for this analysis and for reflection on the development and conduct of land stewardship programs in the changing context of government policy in land restoration funding.

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