scholarly journals Evaluating Community Engagement Strategies to Manage Stigma in Two African Genomics Studies Involving People Living with Schizophrenia or Rheumatic Heart Disease

2021 ◽  
Vol 2021 ◽  
pp. 1-9
Author(s):  
Megan M. Campbell ◽  
Olivia P. Matshabane ◽  
Sibonile Mqulwana ◽  
Michael Mndini ◽  
Mohamed Nagdee ◽  
...  
Keyword(s):  
Mental Health ◽  
Heart Disease ◽  
Community Engagement ◽  
Health Research ◽  
Research Study ◽  
Rating Scale ◽  
Evaluation Strategies ◽  
Genomics Research ◽  
Stigma Resistance ◽  
Rheumatic Heart

In global health research and genomics research specifically, community engagement has gained prominence in enhancing ethical conduct, particularly in managing the risk of stigmatization, but there is minimal scientific evidence on how to do this effectively. This article reports on community engagement evaluation strategies in two African genomics studies: the Stigma in African Genomics Research study and the Genomics of Schizophrenia in South African Xhosa People (SAX) study. Within the Stigma in African Genomics Research study, a self-report rating scale and open-ended questions were used to track participant responses to an experiential theatre workshop. The workshop focused on participant experiences of living with schizophrenia or rheumatic heart disease (RHD). While the schizophrenia group reported more alienation and less stigma resistance than the RHD group, both groups demonstrated increased stigma resistance over time, after participating in the workshops. Hearing from others living with and managing the same illness normalised participants’ own experiences and encouraged them. Within the SAX study, a short rating scale and qualitative feedback methods were used to evaluate a Mental Health Literacy Day targeting mental health stigma. Information talks about (i) the symptoms of schizophrenia and treatment options and (ii) the illness experiences of a patient in recovery were rated as the most helpful on the day. Audience members reported that these talks challenged negative perceptions about severe mental illness. Three important learnings emerged from these evaluations: firstly, integration of evaluation strategies at the research study planning phase is likely to promote more effective community engagement. Secondly, a combination of quantitative and qualitative methods that draw on simple descriptive statistics and thematic analysis can provide nuanced perspectives about the value of community engagement. Thirdly, such evidence is necessary in establishing and promoting the science of community engagement in genomics research and health research more broadly.

scholarly journals Ethical issues in mental health research: the case for community engagement

2011 ◽  
Vol 24 (3) ◽  
pp. 208-214 ◽  
Author(s):  
James M DuBois ◽  
Brendolyn Bailey-Burch ◽  
Dan Bustillos ◽  
Jean Campbell ◽  
Linda Cottler ◽  
...  
Keyword(s):  
Mental Health ◽  
Community Engagement ◽  
Health Research ◽  
Ethical Issues ◽  
Mental Health Research

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 3487 Trust in Research Among Older Adults

2019 ◽  
Vol 3 (s1) ◽  
pp. 98-98
Author(s):  
Catherine Woodstock Striley ◽  
Shawnta Lloyd ◽  
Deepthi Varma ◽  
Krishna Vaddiparti ◽  
Linda B. Cottler
Keyword(s):  
Older Adults ◽  
Community Engagement ◽  
Social Services ◽  
Health Research ◽  
Research Study ◽  
Health Workers ◽  
Community Members ◽  
Study Population ◽  
Interest In Research

OBJECTIVES/SPECIFIC AIMS: Adults, 60 years of age and older, are in high demand for enrollment in many types of health research. Here we aimed to examine baseline, 60-day and 120-day follow-up trust in research and researchers of Floridians 60 years of age and older engaged in University of Florida’s HealthStreet community engagement initiative. METHODS/STUDY POPULATION: HealthStreet Community Health Workers (CHWs) assess health needs and trust in research of community members and screen for dementia, before providing medical and social services referrals and linkages to opportunities to participate in relevant health research at UF. In addition, participants are followed up at 60 and 120 days. RESULTS/ANTICIPATED RESULTS: Among the 2,193 older adults assessed by CHWs, 62.6% were female, 46.8% were African American, and 6.1% Hispanic/Latino. At baseline, 28.3% reported ever being in a research study; 7.7% reported not being interested in participating in research. Trust in research and researchers was high at baseline [scored from 1 to 10 where 10 was high; mean of 7.4 each for trust in research (SD=2.0) and trust in researchers (SD=2.1)] and high at both follow-ups [60 days 7.8 (SD=2.1) and 7.7 (SD=2) for trust in research and researchers respectively; 120 days 8.0 for both (SD=1.9 and 1.8 respectively)]. DISCUSSION/SIGNIFICANCE OF IMPACT: Individuals who are 60 and older have high trust in research and researchers when approached and high interest in research. Their trust continues through work with HealthStreet CHWs. Community engagement is an important part of the pipeline for recruitment of older adults for research.

scholarly journals The RECARDINA Study protocol: diagnostic utility of ultra-abbreviated echocardiographic protocol for handheld machines used by non-experts to detect rheumatic heart disease

BMJ Open ◽  
2020 ◽  
Vol 10 (5) ◽  
pp. e037609
Author(s):  
Joshua Reginald Francis ◽  
Helen Fairhurst ◽  
Gillian Whalley ◽  
Alex Kaethner ◽  
Anna Ralph ◽  
...  
Keyword(s):  
Heart Disease ◽  
Diagnostic Accuracy ◽  
Research Ethics ◽  
Health Worker ◽  
Rheumatic Heart Disease ◽  
Sensitivity And Specificity ◽  
Health Research ◽  
Index Test ◽  
Timor Leste ◽  
Rheumatic Heart

IntroductionRheumatic heart disease (RHD) causes significant morbidity and mortality in young people from disadvantaged populations. Early detection through echocardiography screening can facilitate early access to treatment. Large-scale implementation of screening could be feasible with the combination of inexpensive standalone ultrasound transducers and upskilling non-expert practitioners to perform abbreviated echocardiography.Methods and analysisA prospective cross-sectional study will evaluate an abbreviated echocardiography screening protocol for the detection of latent (asymptomatic) RHD in high-risk populations. The study will evaluate the diagnostic accuracy of health worker conducted single parasternal long axis view with a sweep using handheld devices (SPLASH) (Philips Lumify S4-1 phased array transducer). Each participant will have at least one reference test performed on the same day by an expert echocardiographer. Diagnosis of RHD will be determined by a panel of three experts, using 2012 World Heart Federation criteria. Sensitivity and specificity of the index test will be calculated with 95% CIs, to determine diagnostic accuracy of a screen-and-refer approach to echocardiography screening for RHD. Remote review of SPLASH images obtained by health workers will facilitate evaluation of the sensitivity and specificity of an alternative approach, using external review of health worker obtained SPLASH images to decide onward referral.Ethics and disseminationEthics approval was obtained from the Human Research Ethics Committee of the Northern Territory Department of Health and Menzies School of Health Research, for the project to be carried out in Timor-Leste (HREC 2019-3399), and in Australia, following review by the Aboriginal Ethics subcommittee (HREC 2019-334). Ethical and technical approval was granted in Timor-Leste, by the Institute National of Health Research Ethics and Technical Committee (1073-MS-INS/GDE/VII/2019). Study results will be disseminated in the communities involved in the study, and through peer-reviewed publications and conference abstracts.Trial registration numberThe Australia New Zealand Clinical Trials Registry (ACTRN12620000122954).

scholarly journals An Exploration of the Effect of Community Engagement in Research on Perceived Outcomes of Partnered Mental Health Services Projects

2011 ◽  
Vol 1 (3) ◽  
pp. 185-199 ◽  
Author(s):  
Dmitry Khodyakov ◽  
Susan Stockdale ◽  
Felica Jones ◽  
Elizabeth Ohito ◽  
Andrea Jones ◽  
...  
Keyword(s):  
Mental Health ◽  
Community Engagement ◽  
Vulnerable Populations ◽  
Health Research ◽  
Community Based Participatory Research ◽  
Mental Health Research ◽  
Research Projects ◽  
Complex Environments ◽  
Academic Leaders ◽  
The Impact

Mental health research projects address sensitive issues for vulnerable populations and are implemented in complex environments. Community-based participatory research approaches are recommended for health research on vulnerable populations, but little is known about how variation in participation affects outcomes of partnered research projects. We developed a conceptual model demonstrating the impact of community engagement in research on outcomes of partnered projects. We collected data on key constructs from community and academic leaders of 21 sampled partnered research projects in two cycles of a research center funded by the National Institute of Mental Health. We conducted empirical analyses to test the model. Our findings suggest that community engagement in research is positively associated with perceived professional development as well as political and community impact.

scholarly journals Quality of life in patients with chronic rheumatic heart disease

2018 ◽  
pp. 130-134
Author(s):  
V. S. Petrov
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Heart Disease ◽  
Correlation Coefficient ◽  
Rheumatic Heart Disease ◽  
Kansas City ◽  
Short Form ◽  
Sf 36 ◽  
Rheumatic Heart

The article presents the results of a study of the quality of life in 102 non-surgically treated patients with chronic rheumatic heart disease (CRHD) over 5 years. The authors used questionnaires to assess the quality of life: the Short Form Medical Outcomes Study (SF-36), the Kansas City Cardiomyopathy Questionnaire (KCCQ) and the Minnesota Living with Heart Failure Questionnaire (MHFLQ). During 5-year follow-up, a statistically significant decrease in the total index of SF-36 physical health component from 36.39 ± 0.54 to 34.04 ± 0.74 and the functional status KCCQ from 23.14 ± 0.56 to 21.2 ± 0.58 was recorded against a 18.6 meters decrease in 6 minute walk distance, an increase in dyspnoea according to a visual analogue scale, a 0.1 cm2 decrease in the mitral orifice area and an increase in the atrium size. According to the summary of the SF-36 mental health component, the total clinical KCCQ indicator, and according to MHFLQ data, no statistically significant changes were observed. Two summary indicators of the KCCQ questionnaire had a significant correlation with SF-36: the functional KCCQ status correlated with the physical (correlation coefficient 0.689) and SF-36 mental (correlation coefficient 0.365) health components. The overall clinical KCCQ indicator also correlated with the SF-36 physical (correlation coefficient 0.305) and mental health – 38.65 ± 0.73 (correlation coefficient 0.588) components. Thus, SF-36 and KCCQ proved to be the most appropriate questionnaires to assess the quality of life of patients with CRDS.

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