Malaria outbreak response in urban Santo Domingo, Dominican Republic: lessons learned for community engagement

Community engagement is crucial for public health initiatives, yet it remains an under-studied process within national disease elimination programs. This report shares key lessons learned for community engagement practices during a malaria outbreak response in the Los Tres Brazos neighborhood of urban Santo Domingo, Dominican Republic from 2015-2016. In this two-year period, 233 cases of malaria were reported—more than seven times the number of cases (31) reported in the previous two years. The initial outbreak response by the national malaria program emphasized “top-down” interventions such as active surveillance, vector control, and educative talks within the community. Despite a transient reduction in reported cases in mid-2015, transmission resurged at the end of 2015. The program responded by introducing active roles for trained community members that included door-to-door fever screening, testing with rapid diagnostic tests and treatment. Malaria cases declined significantly throughout 2016 and community-based active surveillance infrastructure helped to detect and limit a small episode of transmission in 2017. Results from qualitative research among community members revealed two key factors that facilitated their cooperation with community-based surveillance activities: motivation to help one’s community; and trust among stakeholders (community health workers, their neighbors and other key figures in the community, and malaria program staff and leadership). This experience suggests that community-led interventions and the program’s willingness to learn and adapt under changing circumstances can help control malaria transmission and pave the way for elimination.

Download Full-text

Are Communities Willing to Transition Into Learning Health Care Communities? A Community-Based Participatory Evaluation of Stakeholders’ Receptivity

Qualitative Health Research ◽

10.1177/1049732321998643 ◽

2021 ◽

pp. 104973232199864

Author(s):

Nabil Natafgi ◽

Olayinka Ladeji ◽

Yoon Duk Hong ◽

Jacqueline Caldwell ◽

C. Daniel Mullins

Keyword(s):

Health Care ◽

Health Care Delivery ◽

Health Care Professionals ◽

Care Delivery ◽

Lessons Learned ◽

Community Members ◽

Community Based ◽

Care Community ◽

Care Experience ◽

National Initiative

This article aims to determine receptivity for advancing the Learning Healthcare System (LHS) model to a novel evidence-based health care delivery framework—Learning Health Care Community (LHCC)—in Baltimore, as a model for a national initiative. Using community-based participatory, qualitative approach, we conducted 16 in-depth interviews and 15 focus groups with 94 participants. Two independent coders thematically analyzed the transcripts. Participants included community members (38%), health care professionals (29%), patients (26%), and other stakeholders (7%). The majority considered LHCC to be a viable model for improving the health care experience, outlining certain parameters for success such as the inclusion of home visits, presentation of research evidence, and incorporation of social determinants and patients’ input. Lessons learned and challenges discussed by participants can help health systems and communities explore the LHCC aspiration to align health care delivery with an engaged, empowered, and informed community.

Download Full-text

Bringing Older Adults to the Table: Opportunities for Consumer Engagement in Planning and Policy Making

Innovation in Aging ◽

10.1093/geroni/igaa057.337 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 102-102

Author(s):

Alice Prendergast ◽

Kristi Fuller

Keyword(s):

Data Collection ◽

Community Engagement ◽

Community Involvement ◽

Social Connectedness ◽

Planning Process ◽

The United States ◽

Lessons Learned ◽

Service Planning ◽

Community Members ◽

Design Data

Abstract Efforts to include community voice in health policy and service planning are gaining recognition and support in the United States. Findings suggest community involvement can contribute to a better understanding of systems and factors that impact health, and, subsequently, more effective and sustainable policy and program design. Additionally, engagement can increase community buy-in, and community members can gain a greater awareness of services; increased confidence navigating systems; feelings of social connectedness; and capacity to advocate around issues through participation. Despite these findings, the extent to which community members are engaged in planning and decision-making varies considerably. Researchers from Georgia State University conducted a review of state plans on aging using the Person-Centered Outcomes Research Initiative (PCORI) Engagement Principles and the Health Research & Educational Trust’s Community and Patient Engagement Spectrum as frameworks to assess evidence of community engagement. The frameworks recognize engagement throughout the planning process, including design, data collection and interpretation, and dissemination. The review revealed that few planning processes described significant engagement, but rather met the minimal requirements established by federal policy. Federal guidance on community-informed planning practices is sparse, as are resources to support states in adopting these processes. To address this gap, the research team drew on the frameworks and other promising practices to design two community engagement projects, both in partnership with Georgia’s Division of Aging Services. Methods for participant engagement, data collection, interpretation and application of results, and lessons learned through both projects will be discussed, as well as potential implications.

Download Full-text

The effect of community dialogues and sensitization on patient reporting of adverse events in rural Uganda: uncontrolled before-after study

10.1101/402503 ◽

2018 ◽

Author(s):

Helen Byomire Ndagije ◽

Leonard Manirakiza ◽

Dan Kajungu ◽

Edward Galiwango ◽

Donna Kusemererwa ◽

...

Keyword(s):

Adverse Events ◽

Community Engagement ◽

Adverse Drug Events ◽

Health Workers ◽

Household Survey ◽

Rural Setting ◽

Health Issues ◽

Community Members ◽

Cross Sectional ◽

Before And After

AbstractBackgroundThe patients that experience adverse events are in the best position to report them, only if they were empowered to do so. Systematic community engagement and support to patients in a rural setting to monitor any potential harm from medicines should provide evidence for patient safety.MethodsThis paper describes an uncontrolled before and after study aimed at assessing the effect of a community engagement strategy, the Community Dialogues and Sensitization (CDS) intervention between January and April 2017, on the knowledge, attitude and practice of reporting adverse drug events by community members in the two eastern Ugandan districts. A representative cross-sectional baseline household survey was done prior to the intervention in September 2016 (n=1034) and the end-line survey (n=827) in July 2017.ResultsAfter implementation of the CDS intervention, there was an overall 20% (95% CI=16- 25) increase in awareness about adverse drug events in the community. The young people (15- 24 years) demonstrated a 41% (95% CI =31-52) increase and the un-educated showed a 50% (95% CI=37-63) increase in awareness about adverse drug events. The attitudes towards reporting increased overall by 5% in response to whether there was a need to report ADEs (95% CI =3-7). An overall 115% (95% CI =137-217) increase in the population that had ever experienced ADEs was also reported.ConclusionOur evaluation shows that the CDS intervention increases knowledge, improves attitudes by catalyzing discussions among community members and health workers on health issues and monitoring safety of medicines.

Download Full-text

Aiming for Sustainability and Scalability: Community Engagement in Forest Payment Schemes

Forests ◽

10.3390/f11040444 ◽

2020 ◽

Vol 11 (4) ◽

pp. 444

Author(s):

Laura F. Kowler ◽

Arun Kumar Pratihast ◽

Alonso Pérez Ojeda del Arco ◽

Anne M. Larson ◽

Christelle Braun ◽

...

Keyword(s):

Community Engagement ◽

Indigenous Communities ◽

Forest Degradation ◽

Forest Monitoring ◽

Climate Mitigation ◽

Transfer Program ◽

Community Members ◽

Community Based ◽

Community Monitoring ◽

Payment Schemes

Community-based forest monitoring is seen as a way both to improve community engagement and participation in national environmental payment schemes and climate mitigation priorities and to implement reducing emissions from deforestation and forest degradation and foster conservation, sustainable management of forests and enhancement of forest carbon stocks in developing countries (REDD+). There is a strong assumption among community-based monitoring advocates that community monitoring is a desirable approach. However, it is unclear why community members would want to participate in their own surveillance or be involved in a program likely to limit livelihood uses of forest areas and possibly even sanction them based on the data provided. This paper explores these issues by examining three communities involved in Peru’s Conditional Direct Transfer Program, in which indigenous communities are compensated for protecting communal forests through various mechanisms, including forest monitoring. The case studies focus specifically on communities that received smartphones and were trained in their use for monitoring. The results affirm the importance that benefits outweigh the costs of local participation to sustain motivation. They also point to key factors supporting the legitimacy of the program, specifically to overcome historical tensions between the state and indigenous communities. These include the nature of engagement by program implementers and the importance of building trust over time.

Download Full-text

Development of a culturally and linguistically sensitive virtual reality educational platform to improve vaccine acceptance within a refugee population: the SHIFA community engagement-public health innovation programme

BMJ Open ◽

10.1136/bmjopen-2021-051184 ◽

2021 ◽

Vol 11 (9) ◽

pp. e051184

Author(s):

Samantha Streuli ◽

Najla Ibrahim ◽

Alia Mohamed ◽

Manupriya Sharma ◽

Markie Esmailian ◽

...

Keyword(s):

Virtual Reality ◽

Community Engagement ◽

Technology Development ◽

Community Based Participatory Research ◽

Educational Programme ◽

Community Members ◽

Somali Refugees ◽

Community Based ◽

Research Technology ◽

Refugee Community

ObjectivesTo combat misinformation, engender trust and increase health literacy, we developed a culturally and linguistically appropriate virtual reality (VR) vaccination education platform using community-engaged approaches within a Somali refugee community.DesignCommunity-based participatory research (CBPR) methods including focus group discussions, interviews, and surveys were conducted with Somali community members and expert advisors to design the educational content. Co-design approaches with community input were employed in a phased approach to develop the VR storyline.Participants60 adult Somali refugees and seven expert advisors who specialise in healthcare, autism research, technology development and community engagement.SettingSomali refugees participated at the offices of a community-based organisation, Somali Family Service, in San Diego, California and online. Expert advisors responded to surveys virtually.ResultsWe find that a CBPR approach can be effectively used for the co-design of a VR educational programme. Additionally, cultural and linguistic sensitivities can be incorporated within a VR educational programme and are essential factors for effective community engagement. Finally, effective VR utilisation requires flexibility so that it can be used among community members with varying levels of health and technology literacy.ConclusionWe describe using community co-design to create a culturally and linguistically sensitive VR experience promoting vaccination within a refugee community. Our approach to VR development incorporated community members at each step of the process. Our methodology is potentially applicable to other populations where cultural sensitivities and language are common health education barriers.

Download Full-text

Bringing Community Back to Community Health Worker Studies: Community interactions, data collection, and health information flows

The Journal of Community Informatics ◽

10.15353/joci.v13i3.3329 ◽

2017 ◽

Vol 13 (3) ◽

Author(s):

Eric Ryan Obeysekare ◽

Khanjan Mehta ◽

Carleen Maitland

Keyword(s):

Data Collection ◽

Community Health ◽

Health Information ◽

Health Workers ◽

Participant Observation ◽

Health Resources ◽

Community Members ◽

Community Interactions ◽

Community Based ◽

Potential Health

Community Health Workers (CHWs) have the potential to be a great resource in the further growth of the fledging healthcare systems that exist in many developing countries. Through their position as community members, CHWs can interact with other individuals in the areas where they live and work and serve as valuable health resources by providing basic health information and referrals up the healthcare chain. However, few studies have examined CHWs from a community-based perspective. This study analyzes the work and relationships of several CHWs working for the Mashavu mHealth venture in Nyeri, Kenya. Through the use of participant observation and interviews, the workflows of these CHWs were investigated with a specific eye towards interactions between CHWs and their communities and how these interactions affect potential health data collection opportunities. This community-based perspective reveals unique insights into the workflows of the CHWs and how technology might be designed to support them.

Download Full-text

Addressing Mental Health Disparities in Refugee Children Through Family and Community-Based Prevention

Humanitarianism and Mass Migration ◽

10.1525/california/9780520297128.003.0007 ◽

2018 ◽

pp. 137-164

Author(s):

Theresa S. Betancourt ◽

Rochelle L. Frounfelker ◽

Jenna M. Berent ◽

Bhuwan Gautam ◽

Saida Abdi ◽

...

Keyword(s):

Mental Health ◽

New England ◽

Home Visiting ◽

Intervention Program ◽

Health Workers ◽

Lessons Learned ◽

Research Approach ◽

Pilot Phase ◽

Community Based ◽

Family Based

This chapter presents an overview of a family-based intervention program and the impact it has on outcomes of parent-child relationships, family functioning, and child mental health among Bhutanese and Somali Bantu refugees in New England. The program uses a Community Based Participatory Research approach, emphasizing strong community engagement, support from community advisory boards, and the use of refugee community health workers to implement the home-visiting Family Strengthening Intervention (FSI). The FSI uses a strengths-based approach to focus on prevention, resilience, and overcoming barriers, while improving linkages to important community resources. The program is currently in its pilot phase (n=80 families) and preparing for scaling-up (n=300 families) with adaptations based on preliminary findings and lessons learned. A mixed-methods design is used to assess the effectiveness of the FSI and inform next stages of the research. This chapter presents preliminary findings of formative work and from the pilot phase of the program.

Download Full-text

Mental illness in Bwindi, Uganda: Understanding stakeholder perceptions of benefits and barriers to developing a community-based mental health programme

African Journal of Primary Health Care & Family Medicine ◽

10.4102/phcfm.v9i1.1462 ◽

2017 ◽

Vol 9 (1) ◽

Cited By ~ 1

Author(s):

Kristen L. Sessions ◽

Lydia Wheeler ◽

Arya Shah ◽

Deenah Farrell ◽

Edwin Agaba ◽

...

Keyword(s):

Mental Health ◽

Mental Illness ◽

Health Workers ◽

Psychiatric Disease ◽

Structured Interviews ◽

Community Members ◽

Community Based ◽

Significant Treatment ◽

Middle Income ◽

Wide Range

Background: Mental illness has been increasingly recognised as a source of morbidity in low- and middle-income countries and significant treatment gaps exist worldwide. Studies have demonstrated the effectiveness of task sharing through community-based treatment models for addressing international mental health issues.Aim: This paper aims to evaluate the perceptions of a wide range of mental health stakeholders in a Ugandan community regarding the benefits and barriers to developing a community-based mental health programme.Setting: Bwindi Community Hospital (BCH) in south-west Uganda provides services through a team of community health workers to people in the Kanungu District.Methods: Thematic analysis of 13 semi-structured interviews and 6 focus group discussions involving 54 community members and 13 mental health stakeholders within the BCH catchment area.Results: Stakeholders perceived benefits to a community-based compared to a hospital-based programme, including improved patient care, lower costs to patients and improved community understanding of mental illness. They also cited barriers including cost, insufficient workforce and a lack of community readiness.Conclusions: Stakeholders express interest in developing community-based mental health programmes, as they feel that it will address mental health needs in the community and improve community awareness of mental illness. However, they also report that cost is a significant barrier to programme development that will have to be addressed prior to being able to successfully establish such programming. Additionally, many community members expressed unique sociocultural beliefs regarding the nature of mental illness and those suffering from a psychiatric disease.

Download Full-text

Lessons from a community-based participatory research study with transgender and gender nonconforming youth and their families

Action Research ◽

10.1177/1476750318818875 ◽

2018 ◽

Vol 17 (2) ◽

pp. 186-207 ◽

Cited By ~ 2

Author(s):

Sabra L Katz-Wise ◽

Annie Pullen Sansfaçon ◽

Laura M Bogart ◽

Milagros C Rosal ◽

Diane Ehrensaft ◽

...

Keyword(s):

Participatory Research ◽

Community Based Participatory Research ◽

Well Being ◽

Research Process ◽

Lessons Learned ◽

Community Partner ◽

Community Members ◽

Community Based ◽

Gender Nonconforming ◽

And Gender

Community-based participatory research (CBPR) involves community members collaborating with academic investigators in each step of the research process. CBPR may be especially useful for research involving marginalized populations with unique perspectives and needs. In this paper, we discuss successes and challenges of using a CBPR approach for the Trans Teen and Family Narratives Project, a longitudinal mixed-methods study to examine how the family environment affects the health and well-being of transgender and gender nonconforming youth. We describe considerations for using a CBPR approach with this population, including defining the community of transgender and gender nonconforming youth and families, engaging the community in the research process, managing conflicting agendas for community partner meetings, addressing insider/outsider status of the researchers, resolving researcher/community tensions regarding data collection tools, integrating academic and community members into a cohesive research team, developing safety plans to address participant suicidality disclosures, and differentiating the role of academics as researchers vs. advocates. We conclude by sharing lessons learned, which can inform future research to address the needs of transgender and gender nonconforming youth and families.

Download Full-text