Community engagement and involvement in Ghana: conversations with community stakeholders to inform surgical research.
Ontology highlight
ABSTRACT:
SUBMITTER: Kroese K
PROVIDER: S-EPMC8256583 | biostudies-literature | 2021 Jul
REPOSITORIES: biostudies-literature
Publications
Community engagement and involvement in Ghana: conversations with community stakeholders to inform surgical research.
Kroese Karolin K Ofori Bernard Appiah BA Abdulai Darling Ramatu DR Monahan Mark M Prah Angela A Tabiri Stephen S
Research involvement and engagement 20210705 1
<h4>Background</h4>Involving patients and communities with health research in low- and middle-income countries (LMICs) contributes to increasing the likelihood that research is relevant in local context and caters to the needs of the population, including vulnerable and marginalised groups. When done right, it can also support empowerment of wider communities in taking ownership of their own health, lead to increased access and uptake of health services and generally improve the wellbeing of ind ...[more]
Similar Datasets
Project description:Autistic people, and other community stakeholders, are gaining increasing recognition as valuable contributors to autism research, resulting in a growing corpus of participatory autism research. Yet, we know little about the ways in which stakeholders practice and experience community engagement in autism research. In this study, we interviewed 20 stakeholders (academics, autistic people, family members/careers, research students, and service providers) regarding their experiences of community engagement in Australian autism research. Through reflexive thematic analysis of interview data, we generated four themes. First, our participants perceived academia as an "ivory tower," disconnected from community members' lives and priorities. Second, our participants identified that different stakeholders tended to hold different roles within their research projects: academics typically retained power and control, while community members' roles tended toward tokenism. Third, our participants spoke of the need to "bridge the gap" between academia and the community, highlighting communication, accessibility, and planning as key to conducting effective participatory research. Lastly, participants emphasized the changing nature of autism research, describing participatory research as "the way of the future." Our findings reflect both the progress achieved to date, and the challenges that lie ahead, as the field advances toward genuine co-production of autism research.
| S-EPMC9454607 | biostudies-literature
Project description:BackgroundDissemination of research findings to past study participants and the community-at-large is important. Yet, a standardized process for research dissemination is needed to report results to the community.ObjectiveWe developed a framework and strategies to guide community-academic partnerships in community-targeted, dissemination efforts.MethodsFrom 2017 to 2019, a community-academic partnership was formed in Nashville, Tennessee, and iteratively developed a framework and strategies for research dissemination using cognitive interviews. A deductive, constant comparative analysis was conducted on interview responses to examine framework and strategy content. Feedback was used to finalize the framework and strategies for the evaluation. Using existing data, the framework's utility was evaluated in seven town hall meetings (n = 117). Bivariate analyses determined its effect on community members' trust and willingness to participate in research using pre- and post-surveys. Evaluation results were used to finalize the framework.ResultsThe Community-Engaged Research Dissemination (CERD) framework has two phases. Phase one is a preliminary planning phase with two steps, and phase two is the four-step dissemination process. There are five standards to be upheld conducting these phases. We provide competencies for each component. Three feasible, culturally adapted strategies were developed as exemplars to disseminate research findings. Using pre- and post-surveys for intervention evaluation, there was a significant difference in trust in medical research and researchers (P = .006) and willingness to participate in research (P = .013).Discussion and conclusionThe CERD framework can potentially standardize the process and compare the effect of dissemination efforts on the community's trust and willingness to participate in research.
| S-EPMC7495063 | biostudies-literature
Project description:BackgroundPatient and public involvement (PPI) has become essential in health research. However, little is known about multiple stakeholders' perspectives on the implementation of PPI in community mental health research settings. The present study aimed to qualitatively analyse multiple stakeholders' views on PPI, including potential concerns, barriers and approaches.MethodsThis study involved conducting focus group interviews and collecting qualitative data from 37 participants in multiple stakeholder groups (patients = 6, caregivers = 5, service providers = 7, government staff = 5 and researchers = 14) in the community mental health field. The data were qualitatively analysed using a data-driven approach that derived domains, themes and subthemes related to perspectives on PPI and to specific challenges and approaches for implementing PPI.ResultsThe qualitative analysis identified four domains. The 'Positive views and expectations regarding PPI' domain consisted of themes related to supportive views of PPI in a mental health service research setting and improvements in the quality of research and service. The 'General concerns about PPI' domain included themes concerning the need for non-PPI research and tokenism, excessive expectations concerning social changes and use of evidence from PPI research, and heavy burdens resulting from PPI. The 'Specific issues regarding the implementation of PPI' domain consisted of four themes, including academic systems, selection methods (e.g., representativeness and conflict of interest issues), relationship building, and ambiguous PPI criteria. In particular, all stakeholder groups expressed concerns about relational equality during PPI implementation in Japan. The 'Approaches to PPI implementation' domain included themes such as facilitating mutual understanding, creating a tolerant atmosphere, establishing PPI support systems (e.g., training, ethics and human resource matching) and empowering patient organizations.ConclusionThe study replicated most of the barriers and approaches to PPI reported by qualitative research in Western counties. However, utilization of evidence produced by PPI research and partnership in the PPI process may be particularly serious issues in Japan. Future PPI studies should carefully address solutions that fit each culture.Patient or public contributionA patient-researcher was involved in all stages of this project, from development of the research topic and the protocol to manuscript preparation.
| S-EPMC9327805 | biostudies-literature
Project description:Community engagement (CE) is praised to be a powerful vehicle in empowering communities with knowledge and skills to make informed decisions for better health care. Several CE approaches have been proposed to improve participants' and research communities' understanding of genomic research including pharmacogenomic information and results. However, there is limited literature on how these approaches can be used to communicate findings of pharmacogenomic research to communities of people living with HIV. This study explored stakeholders' perspectives on the role of community engagement in promoting understanding of pharmacogenomic research results among people living with HIV. We adopted a qualitative approach that involved 54 stakeholders between September 2021 and February 2022. We held five focus group discussions among 30 community representatives from five research institutions, 12 key informant interviews among researchers, and 12 in-depth interviews among ethics committee members. A thematic approach was used to analyze the results. Five themes merged from this data and these included (i) benefits of engaging communities prior to returning individual pharmacogenomic research results to participants. (ii) Obtaining community consensus on the kinds of pharmacogenomic results to be returned. (iii) Opinions on how pharmacogenomic research information and results should be communicated at community and individual levels. (iv) Perceived roles of community stakeholders in promoting participants' understanding and utilization of pharmacogenomic research results. (v) Perceived challenges of engaging communities when returning individual results to research participants. Stakeholders opined that CE facilitates co-learning between researchers and research communities. Researchers can adapt existing CE approaches that are culturally acceptable for meaningful engagement with minimal ethical and social risks when communicating pharmacogenomic research results. CE approaches can facilitate understanding of pharmacogenomic research and findings among research participants and communities. Therefore, if creatively adapted, existing and new CE approaches can enable researchers to communicate simple and understandable results of pharmacogenomic research.
| S-EPMC10986979 | biostudies-literature
Project description:ObjectiveTo explore how patients, community-based perinatal support professionals, and health system clinicians and staff perceived facilitators and barriers to implementation of a randomized clinical trial (RCT) designed to optimize Black maternal heart health.MethodsThis article describes the formative work that we believed needed to occur before the start of the Change of H.E.A.R.T (Here for Equity, Advocacy, Reflection and Transformation) RCT. We used a qualitative, descriptive design and community-based, participatory approach, the latter of which allowed our team to intentionally focus on avoiding harm and equalizing power dynamics throughout the research process. Data were collected between November 2021 and January 2022 through six semistructured focus groups that included attending physicians and midwives (n=7), residents (n=4), nurses (n=6), support staff (n=7), community-based perinatal support professionals (n=6), and patients (n=8).ResultsFour primary themes emerged. The first three themes were present across all groups and included: 1) Trauma in the Community and Health System, 2) Lack of Trust, and 3) Desire to Be Heard and Valued. The fourth theme, Hope and Enthusiasm, was expressed predominantly by patients, community-based perinatal support professionals, residents, and support staff, and less so by the attending physician group.ConclusionParticipants articulated a number of key sentiments regarding facilitators and barriers to implementing Change of H.E.A.R.T. We noted variability in perceptions from different groups. This has important implications for health equity efforts in similarly underresourced health systems where Black birthing people experience the greatest morbidity and mortality.Clinical trial registrationClinicalTrials.gov, NCT05499507.
| S-EPMC10510772 | biostudies-literature
Project description:ObjectiveThe chronic complications of ageing with HIV are not well studied in sub-Saharan Africa (SSA) where general healthcare resources are limited. We aimed to collaborate with individuals living with HIV aged ≥ 50 years, and community elders (aged ≥ 60 years) living with non-communicable diseases in the Kilimanjaro region of Tanzania in a health research priority-setting exercise.MethodsWe conducted structured workshops based on broad questions to aid discussion and group-based patient priority setting, alongside discussion of the feasibility of future community research engagement. Participant priorities were tallied and ranked to arrive at core priorities from consensus discussion.ResultsThirty older people living with HIV and 30 community elders attended separate priority setting workshops. Both groups reported motivation to participate in, conduct, and oversee future studies. In this resource-limited setting, basic needs such as healthcare access were prioritised much higher than specific HIV-complications or chronic disease. Stigma and social isolation were highly prioritised in those living with HIV.ConclusionsCommunity engagement and involvement in HIV and ageing research appears feasible in Tanzania. Ageing and non-communicable disease research should consider the wider context, and lack of basic needs in low-income settings. A greater impact may be achieved with community involvement.
| S-EPMC9938604 | biostudies-literature
Project description:BackgroundCommunity engagement (CE) is one of the key strategies to optimize ethical integrity in research. However, the knowledge base on how CE should be effectively and ethically conducted, particularly for genetics and genomics research (GGR), is limited. Lessons have not been drawn from the experiences of key stakeholders in GGR, on CE, in Uganda.AimTo analyze the experiences and perspectives of the key stakeholders (GGR researchers, lay communities, and REC members) on engaging communities in GGR, to consequently inform how communities could be ethically engaged in such research, in Uganda.MethodA cross-sectional qualitative study was conducted at; Makerere University, Uganda Virus Research Institute, and Mulago National Referral Hospital. Twenty-five GGR researchers, twenty REC members, and thirty-eight community members, participated in this study. Data were collected using in-depth interviews guides, and Focus group discussions. Data was analyzed thematically, using NVivo version 12 Plus.Study findingsThirteen of the twenty-five GGR researchers had conducted CE in their studies, seven REC members had ever reviewed GGR protocols, and all the community respondents had ever participated in GGR. The goal for CE was reported to depend on the type of GGR as either basic or applied. Planning for CE involved; defining the community and for GGR this includes individuals not directly involved in the research but share the study gene with participants; a bigger CE budget to cover extra costs in GGR. The conduct of CE was reported to mainly occur at sample collection stage, rarely at study conception, and had not occurred at the return of results stage. Implementation of CE involved; engaging leaders first to gain access and acceptance of the research in the community; having a genetic counsellor on the CE team to handle the social issues in GGR.ConclusionThis study provides challenges and facilitators on the conduct of CE in GGR in Uganda. Measures including the building of capacity especially knowledge in both GGR and CE for all the stakeholders, and using this study findings to inform policy, regulation, and further research will potentially contribute to ethical CE in GGR in Uganda and similar research contexts.
| S-EPMC11600932 | biostudies-literature
Project description:Increased global sharing of public health research data has potential to advance scientific progress but may present challenges to the interests of research stakeholders, particularly in low-to-middle income countries. Policies for data sharing should be responsive to public views, but there is little evidence of the systematic study of these from low-income countries. This qualitative study explored views on fair data-sharing processes among 60 stakeholders in Kenya with varying research experience, using a deliberative approach. Stakeholders' attitudes were informed by perceptions of benefit and concerns for research data sharing, including risks of stigmatization, loss of privacy, and undermining scientific careers and validity, reported in detail elsewhere. In this article, we discuss institutional trust-building processes seen as central to perceptions of fairness in sharing research data in this setting, including forms of community involvement, individual prior awareness and agreement to data sharing, independence and accountability of governance mechanisms, and operating under a national framework.
| S-EPMC4548475 | biostudies-literature
Project description:BackgroundCommunity engagement is essential for effective research when addressing issues important to both the community and researchers. Despite its effectiveness, there is limited published evidence concerning the evaluation of community engagement in research projects, especially in the area of nephrology.MethodsWe developed a community engagement program in Guatemala to address the role of hydration in chronic kidney disease of unknown origin, using five key engagement principles: 1. Local relevance and determinants of health. 2. Acknowledgment of the community. 3. Dissemination of findings and knowledge gained to all partners. 4. Usage of community partners' input. 5. Involvement of a cyclical and iterative process in the pursuit of goals. The effectiveness of community engagement was measured by a structured questionnaire on a 5-point likert scale. This measure determined how well and how often the research team adhered to the five engagement principles. We assessed internal consistency for each set of the engagement items through Omega coefficient.ResultsSixty-two community leaders completed the questionnaire. Seventy-five percent were female, with a mean age of 37 years. All 5 engagement principles scored highly on the 5-point likert scale. Every item set corresponding to an engagement principles evaluation had a Omega coefficient > 0.80, indicating a firm internal consistency for all question groups on both qualitative and quantitative scales.ConclusionEngagement of the community in the kidney research provides sustainability of the efforts and facilitates the achievements of the goals. Community leaders and researchers became a team and develop a relationship in which commitment and empowerment facilitated the participation in all aspects of the research process. This initiative could be a useful tool for researchers, especially in low-middle income countries, to start research in a community, achieve objectives in a viable form, and open opportunities to further studies.
| S-EPMC9373416 | biostudies-literature
Project description:Science Cafés, informal venues to promote bidirectional dialog, inquiry and learning about science between community members, scientists, healthcare and service providers, hold promise as an innovative tool for healthcare researchers and community members to improve health outcomes, especially among populations with health disparities. However, the process of optimizing science cafés is under-studied. We describe the pilot evaluation of a series of Science Cafés, called Garden Cafés (n = 9), conducted from September 2015 through April 2016 in Olmsted County, MN and Duval County, FL to connect Mayo Clinic researchers and local service providers with the community. Selection of discussion topics was guided by a county health needs assessment, which identified community priorities. Before leaving the events, community participants completed a brief anonymous survey assessing sociodemographics and their knowledge of research benefits, readiness to participate as a partner in health research, and health and science literacy confidence. Of the 112 attendees who responded, 51% were female and 51% were Black. Respondents reported that participating in the event significantly improved (all at p<0.001) their understanding on all three measures. Preliminary findings suggest that Garden Cafés are an effective forum to increase community understanding and disposition to collaborate in health research, especially in members from diverse backgrounds.
| S-EPMC6086403 | biostudies-literature