There is wide acknowledgement of the need for community engagement in biomedical research, particularly in international settings. Recent debates have described theoretical approaches to identifying situations where this is most critical and potential mechanisms to achieve it. However, there is relatively little published experience of community engagement in practice. A major component of the Kenya Medical Research Institute (KEMRI) Wellcome Trust Research Programme is centred on Kilifi District General Hospital and surrounding community of 240,000 local residents. Documented community perceptions of the research centre are generally positive, but many indicate a low understanding of research and therapeutic misconceptions of its activities. As in other settings, these misunderstandings have contributed to concerns and rumours, and potentially undermine ethical aspects of research and local trust in the institution. Through a series of consultative activities, a community engagement strategy has been developed in Kilifi to strengthen mutual understanding between community members and the Centre. One important component is the establishment of a representative local resident network in different geographic locations commonly involved in research, to supplement existing communication channels. Early implementation of the strategy has provided new and diverse opportunities for dialogue, interaction and partnership building. Through the complex social interactions inherent in the community engagement strategy, the centre aims to build context specific ethical relations with local residents and to strengthen understanding of how ethical principles can be applied in practice. Evaluations over time will assess the effectiveness and sustainability of these strategies, provide generalisable information for similar research settings, and contribute to debates on the universality of ethical principles for research. This paper aims to summarise the rationale for community engagement in research, drawing on published literature and local findings, to outline the process of community engagement in Kilifi and to describe issues emerging from its development and early implementation.
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http://dx.doi.org/10.1016/j.socscimed.2008.02.007 | DOI Listing |
Kidney360
January 2025
Division of Nephrology and Hypertension, Department of Internal Medicine, University of Kansas Medical Centre, 3901 Rainbow Blvd, MS3002, Kansas City, KS, USA.
Background: Patient involvement in research can help to ensure that the evidence generated aligns with their needs and priorities. In the Establishing Meaningful Patient-Centered Outcomes With Relevance for Patients with Polycystic Kidney Disease (EMPOWER PKD) project we aimed to identify patient-important outcomes and discuss the impact of PKD on patients.
Methods: Nine focus groups were held with adult patients with PKD, caregivers, and clinical or research experts in PKD.
J Med Internet Res
January 2025
Behavioural and Implementation Science Group, School of Health Sciences, University of East Anglia, Norwich, United Kingdom.
Background: If the most evidence-based and effective smoking cessation apps are not selected by smokers wanting to quit, their potential to support cessation is limited.
Objective: This study sought to determine the attributes that influence smoking cessation app uptake and understand their relative importance to support future efforts to present evidence-based apps more effectively to maximize uptake.
Methods: Adult smokers from the United Kingdom were invited to participate in a discrete choice experiment.
J Gen Intern Med
January 2025
Department of Medicine, Division of General Internal Medicine, Section of Hospital Medicine, Weill Cornell Medicine, NewYork-Presbyterian Hospital, New York, NY, USA.
Background: Medicine sub-internships aim to prepare students for residency. However, the traditional sub-internship structure, with multiple learners at varied levels, poses obstacles to providing the clinical exposure, learning environment, and direct observation and feedback necessary to develop essential skills.
Aim: Investigate the educational experience of learners on a coaching-centered sub-internship (CCSI) on a resident uncovered ward service.
J Gen Intern Med
January 2025
Department of Neurology, University of Michigan Medical School, Ann Arbor, MI, USA.
Background: Previous reports suggest patient and caregiver lack of awareness of dementia. Little is known about how this varies by ethnicity and how informal (family) caregiver burden is associated with knowing a dementia diagnosis.
Objective: To investigate whether participants with probable dementia were aware of a diagnosis provided by a physician and how this differed among Mexican American and non-Hispanic White participants; whether having a primary care physician was associated with dementia diagnosis unawareness; and the association of dementia diagnosis unawareness with caregiver burden.
Environ Sci Pollut Res Int
January 2025
Department of Environmental Health Sciences and Technology, Institute of Health, Jimma University, Jimma, Ethiopia.
Recycling excreta resources through resource-oriented toilet systems (ROTS) holds transformative potential, yet adoption remains limited, especially where benefits could be high. This study aims to understand constraints hindering the adoption of ROTS in one such area in Ethiopia. Based on a survey among 476 households comprising 2393 individuals, we examine the plans to use ROTS and willingness to pay for ROTS and apply structural equation modelling to analyze the drivers of these two outcomes while comparing the explanative power of the extended technology acceptance model, extended theory of planned behaviour, and their combined model.
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