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.

scholarly journals Applying the Electronic Health Literacy Lens: Systematic Review of Electronic Health Interventions Targeted at Socially Disadvantaged Groups

10.2196/18476 ◽  
2020 ◽  
Vol 22 (8) ◽  
pp. e18476 ◽  
Author(s):  
Christina Cheng ◽  
Alison Beauchamp ◽  
Gerald R Elsworth ◽  
Richard H Osborne
Keyword(s):  
Systematic Review ◽  
Older Adults ◽  
Low Income ◽  
User Involvement ◽  
Low Literacy ◽  
Ehealth Literacy ◽  
Disadvantaged Groups ◽  
Socially Disadvantaged ◽  
Electronic Health ◽  
Improve Health

Background Electronic health (eHealth) has the potential to improve health outcomes. However, eHealth systems need to match the eHealth literacy needs of users to be equitably adopted. Socially disadvantaged groups have lower access and skills to use technologies and are at risk of being digitally marginalized, leading to the potential widening of health disparities. Objective This systematic review aims to explore the role of eHealth literacy and user involvement in developing eHealth interventions targeted at socially disadvantaged groups. Methods A systematic search was conducted across 10 databases for eHealth interventions targeted at older adults, ethnic minority groups, low-income groups, low-literacy groups, and rural communities. The eHealth Literacy Framework was used to examine the eHealth literacy components of reviewed interventions. The results were analyzed using narrative synthesis. Results A total of 51 studies reporting on the results of 48 interventions were evaluated. Most studies were targeted at older adults and ethnic minorities, with only 2 studies focusing on low-literacy groups. eHealth literacy was not considered in the development of any of the studies, and no eHealth literacy assessment was conducted. User involvement in designing interventions was limited, and eHealth intervention developmental frameworks were rarely used. Strategies to assist users in engaging with technical systems were seldom included in the interventions, and accessibility features were limited. The results of the included studies also provided inconclusive evidence on the effectiveness of eHealth interventions. Conclusions The findings highlight that eHealth literacy is generally overlooked in developing eHealth interventions targeted at socially disadvantaged groups, whereas evidence about the effectiveness of such interventions is limited. To ensure equal access and inclusiveness in the age of eHealth, eHealth literacy of disadvantaged groups needs to be addressed to help avoid a digital divide. This will assist the realization of recent technological advancements and, importantly, improve health equity.

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 Insights From African American Older Adults on Brain Health Research Engagement: “Need to See the Need”

2020 ◽  
pp. 073346482090200
Author(s):  
Shoshana H. Bardach ◽  
Markeda Yarbrough ◽  
Charlene Walker ◽  
Doris L. Alfred ◽  
Eseosa Ighodaro ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
Health Research ◽  
Research Participation ◽  
Elevated Risk ◽  
Brain Health ◽  
Research Engagement ◽  
Disease Research ◽  
Dementia Research ◽  
Barriers And Opportunities

African Americans (AAs) have an elevated risk of developing dementia, yet are underrepresented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer’s disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults through an eight to nine session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: (a) Mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.

scholarly journals Addressing diversity and complexity in the community engagement literature: The rationale for a realist review

2020 ◽  
Vol 5 ◽  
pp. 1
Author(s):  
Emma Z.L. Richardson ◽  
Sunita V.S. Bandewar ◽  
Renaud F. Boulanger ◽  
Rukshan Mehta ◽  
Tinya Lin ◽  
...  
Keyword(s):  
Systematic Review ◽  
Global Health ◽  
Community Engagement ◽  
Health Research ◽  
Realist Review ◽  
Realist Synthesis ◽  
Research Note ◽  
Global Health Research ◽  
Core Elements ◽  
Failed Attempt

In this research note we reflect on our failed attempt to synthesize the community engagement literature through a standard systematic review and explain our rationale for now embarking on a realist synthesis of community engagement in global health research. We believe this paper will be helpful for many who grapple with the lack of clarity about community engagement’s core elements and mechanisms.

scholarly journals Community engagement in Genomics research; Challenges and lessons learnt in the AWI-Gen study at Dikgale Health and Demographic Surveillance System (HDSS) Site, South Africa

2020 ◽  
Vol 3 ◽  
pp. 38
Author(s):  
Felistas Mashinya ◽  
Marianne Alberts ◽  
Reneilwe G. Mashaba ◽  
Paulina O. Tindana
Keyword(s):  
Community Engagement ◽  
Health Research ◽  
Surveillance System ◽  
Phase 1 ◽  
Research Process ◽  
Demographic Surveillance System ◽  
Phase 1 Study ◽  
Lessons Learnt ◽  
Genomics Research ◽  
Integral Process

As health research often requires consent from participants and permission from community gate keepers, community engagement is considered an integral process of health research. Community engagement is also important in building trust between the research team and participants, gathering information on the needs and expectations of the community with respect to the project and present the community with an opportunity to gain more information on the goals of the research. Although there are published guidelines on how to conduct community engagement activities, the concept itself and the way in which it is put into practice is highly contextual. In this paper we reflect on the community engagement strategy used in the AWI-Gen Phase 1 study at the Dikgale Health and Demographic Surveillance System (Dikgale HDSS) site, the challenges encountered throughout the research process and the lessons learnt. Lastly, we highlight possible improvements to the CE strategic framework for AWI-Gen Phase 2 in Dikgale HDSS that may enhance the participation of the community.

scholarly journals Are we walking the talk of participatory Indigenous health research? A scoping review of the literature in Atlantic Canada

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0255265
Author(s):  
Kathleen Murphy ◽  
Karina Branje ◽  
Tara White ◽  
Ashlee Cunsolo ◽  
Margot Latimer ◽  
...  
Keyword(s):  
Community Engagement ◽  
Participatory Research ◽  
Scoping Review ◽  
Health Research ◽  
Indigenous Health ◽  
Indigenous Communities ◽  
Research Process ◽  
Atlantic Canada ◽  
Health Related ◽  
Canada Data

Introduction Participatory research involving community engagement is considered the gold standard in Indigenous health research. However, it is sometimes unclear whether and how Indigenous communities are engaged in research that impacts them, and whether and how engagement is reported. Indigenous health research varies in its degree of community engagement from minimal involvement to being community-directed and led. Research led and directed by Indigenous communities can support reconciliation and reclamation in Canada and globally, however clearer reporting and understandings of community-led research is needed. This scoping review assesses (a) how and to what extent researchers are reporting community engagement in Indigenous health research in Atlantic Canada, and (b) what recommendations exist in the literature regarding participatory and community-led research. Methods Eleven databases were searched using keywords for Indigeneity, geographic regions, health, and Indigenous communities in Atlantic Canada between 2001-June 2020. Records were independently screened by two reviewers and were included if they were: peer-reviewed; written in English; health-related; and focused on Atlantic Canada. Data were extracted using a piloted data charting form, and a descriptive and thematic analysis was performed. 211 articles were retained for inclusion. Results Few empirical articles reported community engagement in all aspects of the research process. Most described incorporating community engagement at the project’s onset and/or during data collection; only a few articles explicitly identified as entirely community-directed or led. Results revealed a gap in reported capacity-building for both Indigenous communities and researchers, necessary for holistic community engagement. Also revealed was the need for funding bodies, ethics boards, and peer review processes to better facilitate participatory and community-led Indigenous health research. Conclusion As Indigenous communities continue reclaiming sovereignty over identities and territories, participatory research must involve substantive, agreed-upon involvement of Indigenous communities, with community-directed and led research as the ultimate goal.

scholarly journals Addressing diversity and complexity in the community engagement literature: The rationale for a realist review

2021 ◽  
Vol 5 ◽  
pp. 1
Author(s):  
Emma Z.L. Richardson ◽  
Sunita V.S. Bandewar ◽  
Renaud F. Boulanger ◽  
Rukshan Mehta ◽  
Tinya Lin ◽  
...  
Keyword(s):  
Systematic Review ◽  
Global Health ◽  
Community Engagement ◽  
Health Research ◽  
Realist Review ◽  
Realist Synthesis ◽  
Research Note ◽  
Global Health Research ◽  
Core Elements ◽  
Failed Attempt

In this research note we reflect on our failed attempt to synthesize the community engagement literature through a standard systematic review and explain our rationale for now embarking on a realist synthesis of community engagement in global health research. We believe this paper will be helpful for many who grapple with the lack of clarity about community engagement’s core elements and mechanisms.

Engaging Underrepresented Communities in Health Research: Lessons Learned

2021 ◽  
pp. 019394592098799
Author(s):  
Zhiyuan Yu ◽  
Jennifer Kowalkowski ◽  
Anne E. Roll ◽  
Maichou Lor
Keyword(s):  
Health Disparities ◽  
Health Research ◽  
The United States ◽  
Research Process ◽  
Lessons Learned ◽  
Marginalized Communities ◽  
Community Needs ◽  
Research Engagement ◽  
English Speaking ◽  
Research Questions

Members of marginalized communities experience health disparities or inequities and are underrepresented in health research. Community engagement in research is a catalyst for researchers to address health disparities while prioritizing community needs and strengthening community capacity. There is limited knowledge on how to engage underrepresented communities throughout the research process, particularly on initiating a partnership and planning research with a community. The purpose of this reflection piece is to share individual cases of research engagement within four communities: immigrant postpartum women, rural residents engaged in farming, low literate and non-English speaking adults, and individuals with intellectual disabilities in the United States. In each case, we explain how we initiated partnerships with the communities, continued to integrate community feedback to guide research questions, and implemented tailored methodologies. Finally, we discuss commonalities and differences in approaches used, tailoring within, and lessons learned when working with these diverse, underrepresented communities during the research process.

scholarly journals Structural coercion in the context of community engagement in global health research conducted in a low resource setting in Africa

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Deborah Nyirenda ◽  
Salla Sariola ◽  
Patricia Kingori ◽  
Bertie Squire ◽  
Chiwoza Bandawe ◽  
...  
Keyword(s):  
Global Health ◽  
Community Engagement ◽  
Study Design ◽  
Health Research ◽  
Ethical Issues ◽  
Research Participation ◽  
Community Leaders ◽  
Global Health Research ◽  
Resource Setting ◽  
Low Resource Setting

Abstract Background While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. This paper seeks to discuss some of the ethical issues arising from community engagement in a low resource setting. Methods A qualitative study design focusing on the engagement activities of three biomedical research projects as ethnographic case studies was used to gain in-depth understanding of community engagement as experienced by multiple stakeholders in Malawi. Data was collected through participant observation, 43 In-depth interviews and 17 focus group discussions with community leaders, research staff, community members and research participants. Thematic analysis was used to analyse and interpret the findings. Results The results showed that structural coercion arose due to an interplay of factors pertaining to social-economic context, study design and power relations among research stakeholders. The involvement of community leaders, government stakeholders, and power inequalities among research stakeholders affected some participants’ ability to make autonomous decisions about research participation. These results have been presented under the themes of perception of research as development, research participants’ motivation to access individual benefits, the power of vernacular translations to influence research participation, and coercive power of leaders. Conclusion The study identified ethical issues in community engagement practices pertaining to structural coercion. We conclude that community engagement alone did not address underlying structural inequalities to ensure adequate protection of communities. These results raise important questions on how to balance between engaging communities to improve research participation and ensure that informed consent is voluntarily given.

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