Advancing community-engaged research: increasing trustworthiness within community-academic partnerships
Date
2020-08-20Journal
Journal of Comparative Effectiveness ResearchPublisher
Future Medicine Ltd.Type
Article
Metadata
Show full item recordKeyword
bioethicscommunity-academic partnerships
community-based participatory research (CBPR)
community-engaged research (CEnR)
distrust
medical ethics
trust
trustworthiness
Identifier to cite or link to this item
http://hdl.handle.net/10713/13683ae974a485f413a2113503eed53cd6c53
10.2217/cer-2020-0096
Scopus Count
Collections
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The Community Justice Task Force: Assessing Progress and Looking forward: A Report prepared for the University of Maryland School of Law Community Justice InitiativeShdaimah, Corey S. (2008-07-15)Executive Summary The University of Maryland's School of Law's Community Justice Initiative (CJI) sought community members' perceptions of the impact of its work. This was explored in three focus groups held on February 26, April 10 and April 14 2008 with members of the Community Justice Task Force (CJTF), a broad group of community stakeholders. Specifically, focus group participants were asked to reflect on their: 1. Understanding of community justice and what this looks like "on the ground" 2. Assessment of the work of the CJI thus far. 3. Expectations for the CJI in the future Focus groups were conducted and analyzed by Corey S. Shdaimah, Assistant Professor at the University of Maryland, Baltimore School of Social Work. Main Findings All of the findings reported here are drawn from the focus groups and thus represent the varied perceptions, understandings and goals of participants. 1. Focus group participants believed that current approaches to poverty, community strife, and struggles of Baltimore families and communities are ineffective. They expressed opinions that: a. Healthy communities are communities that do not stifle differences or conflict but rather engage in dialogue. b. Baltimore communities face many different challenges. The wealth of experience and expertise that is shared via the CJTF1 benefits everyone and increases the impact and reach of any one member or group. 2. Most participants believed that the University of Maryland School of Law is uniquely positioned to lead the CJTF. It has the resources, the stature, the connections, and the perception of academic neutrality to serve in this role. 3. Law students reported that they learned a great deal from work with the CJTF. They identified the most significant contributions to their education as follows: a. It helped them evaluate their career goals. b. They gained a better understanding of Baltimore. c. They gained a better understanding of working with clients and communities. 4. Law students also reported frustration with a lack of clarity in several aspects of their work with the CJTF: a. They indicated that there was a mismatch between expectations derived from the course description and their work. b. They were unsure of their roles. c. They had difficulty balancing CJTF work with other Community Development Clinic2 requirements. 5. Focus group participants felt that broader community participation is necessary to the success of CJTF initiatives, particularly the participation of those who live and work in the areas where CJTF initiatives will be implemented. Participants highlighted the following: a. Such participation must engage community members as full partners and leaders in the CJTF. They should determine the agenda and what they would like to see in their communities. b. Coordination, capacity building at the community level, and additional resources can ensure the continuation of CJTF work and implementation of CJTF initiatives. 6. All focus groups emphasized the urgent need for action while continuing to reflect upon and assess CJTF initiatives. Recommendations The focus groups yielded a number of concrete recommendations for addressing the concerns regarding the CJTF and its goals outlined above. I. It is necessary to explore and encourage community justice-informed approaches. a. People should not have to enter into the criminal justice system in order to access services or as a first intervention. b. It is important to identify and address problems and needs as early as possible c. CJTF efforts should be geographically based. 2. The CJTF should continue to serve as a model of healthy and open dialogue for members and for others. CJTF initiatives should: a. Foster participation and engagement. b. Strive for inclusion and fairness. c. Foster "hospitality zones" where different groups within and among communities can listen to each other and work together. 3. The CJTF should continue to work with professionals from a wide variety of agencies with a variety of skill sets. a. It should consider engaging a variety of professionals or students in CJTF leadership or coordinating roles, possibly with funding b. Social workers or community organizers will most likely provide the desired skills and expertise 4. The Community Development Clinic should continue to place law students in the CJTF. a. Modifications can be made to course descriptions to enhance the likelihood of a good match between students and CJTF work. b. Additional theoretical and conceptual groundwork in class meetings would frame the rich discussion around roles and responsibilities of (community) lawyers. 5. The CJTF must prioritize engagement of a broader group of community stakeholders. a. This requires building community capacity to allow participation and to sustain the work of the CJTF. b. Logistical arrangements, such as meeting times/places, should cater more to people who are not "paid to be at the table." c. The CJTF should create institutional memory to ensure continuity even if individuals are unable to sustain long-term participation 6. In addition to funding, the CJTF should seek in-kind services. a. These might include identifying locations to meet and goods and services that businesses would be willing to share. b. The CJTF should also consider how existing public resources can (and should) be reallocated. 7. Limited resources should not prevent the work of the CJTF to move forward. The CJTF should move to a more active phase with the knowledge and resources currently available to ensure continued interest in, and engagement with, CJTF stakeholders.
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Experiences with rehabilitation and impact on community participation among adults with physical disability in Colombia: Perspectives from stakeholders using a community based research approachToro-Hernández, M.L.; Mondragón-Barrera, A.; Múnera-Orozco, S. (BioMed Central Ltd., 2019)Background: Despite representing 70 million people in Latin America, access to comprehensive rehabilitation and participation in the community remains a challenge for persons with disability (PWDs) in the region. Through enactment of the Disability Law, Colombia has made improvements to recognize and address some of the barriers for PWDs, including access to comprehensive rehabilitation. However access remains limited with significant disconnect between perspectives of various stakeholders and the needs of the population. We examined the unique perceptions on access to comprehensive rehabilitation services and participation of PWDs. We also explored the perspective of caregivers of PWDs, rehabilitation professionals, and other stakeholders on the experiences of PWDs. Our goal was to identify gaps in the implementation of comprehensive rehabilitation programs, and barriers to access resources for comprehensive rehabilitation or services that would impact participation of PWDs. Methods: Qualitative study conducted in 2017. Data was collected from a purposive sample of adults with physical disability, aged 18-44 years, who had received rehabilitation services at a local partner organization and with different backgrounds and experiences with disability. Purposive sampling was also conducted with caregivers, rehabilitation professionals, and other stakeholders. Socio-demographic information was collected and semi-structured interviews were conducted by a research team member, recorded, transcribed and analyzed using a thematic analysis method to identify main themes related to our aim. CES University ethical review board approved this study. Results: Thirty-two participants were interviewed: eight were male, 42.1 ± 11.1 years old, and 44% (n = 14) were PWDs. Three main themes were identified among all the participants: the meaning of rehabilitation, challenges to access services, and participation. Challenges to access services had three sub-themes: barriers to personal mobility, perceptions and knowledge on disability, and navigating the system. Conclusion: The main focus of rehabilitation as perceived by stakeholders is still on functional rehabilitation. If healthcare personnel is better trained on disability and if those with disabilities are actively involved in the developing these programs, the focus may evolve to a comprehensive and equitable rehabilitation process that fosters full participation. Copyright 2019 The Author(s).
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Integrating community pharmacy into community based anti-retroviral therapy program: A pilot implementation in Abuja, NigeriaAvong, Y.K.; Aliyu, G.G.; Jatau, B. (Public Library of Science, 2018)Background The landscape of Human Immunodeficiency Virus (HIV) epidemic control is shifting with the United Nations Programme on HIV/AIDS (UNAIDS) 90-90-90 benchmarks for epidemic control. Community-based Antiretroviral Therapy (CART) models have improved treatment uptake and demonstrated good clinical outcomes. We assessed the feasibility of integrating community pharmacy as a task shift structure for differentiated community ART in Abuja-Nigeria. Methods Stable patients on first line ART regimens from public health facilities were referred to community pharmacies in different locations within the Federal Capital Territory, Abuja for prescription refills and treatment maintenance. Bio-demographic and clinical data were collected from February 25, 2016 to May 31st, 2017 and descriptive statistics analysis applied. The outcomes of measure were prescription refill and patient retention in care at the community pharmacy. Results Almost 10% of stable patients on treatment were successfully devolved from eight health facilities to ten community pharmacies. Median age of the participants was 35 years [interquartile range (IQR); 30, 41] with married women in the majority. Prescription refill was 100% and almost all the participants (99.3%) were retained in care after they were devolved to the community pharmacies. Only one participant was lost-to-follow-up as a result of death. Conclusion Excellent prescription refill and high retention in care with very low loss-to-follow-up were associated with the community pharmacy model. The use of community pharmacy for community ART is feasible in Nigeria. We recommend the scale up of the model in all the 36 states of Nigeria. Copyright 2018 Avong et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.