Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
This has been a very interesting journey for me on many accounts. I am at the moment waiting for final ethical clearance to start my project. I have received preliminary approval, however as phase 2 of the project involves working with healthcare professionals from the Department of Health, I need governance approvals from the Department of Health too which seems to be taking forever. It begs the question of the role and process of obtaining ethical approval in fulfilling ethical research. I have been assured that I will get full approval in the next couple of weeks, and hopefully I can go out in the field. The plan at the moment is hopefully to recruit participants in November and I am keen to start the learning process of participatory workshop and using photovoice. I am also excited that I will be working with Nabeel Petersen on this project - who I met at one of the Wellcome Trust engagement workshops in Kenya. Nabeel has a lot of experience in local and international development using creative participatory and collaborative methodologies which will be a big learning curve for me. I would also be interested if there is anyone out there who has done analysis of photos, picture etc (anything that is not text). I would like to learn of different ways that people have analysed these other forms of data.
Just a reminder of what I plan to do:
To explore post-trial ethical responsibilities of; 1) Sponsor, 2) Investigators, 3) Government using the population-based HIV Treatment as Prevention (TasP) ‘ANRS 12249’ project.
i. TasP Participants, (6 families randomly selected from the 22 TasP clusters.)
ii. Community Advisory Board, (Members given opportunity to reflect on study outputs.)
iii. Scientific leaders of TasP, (3 named leads on the TasP protocol).
iv. Sponsors of the trial, (up to 3 individuals).
v. Department of Health representation, (up to 6 district and province level individuals).
There are three planned workshops in the project. The first workshop will be induction and training on using photo voice. The 2nd workshop will take place after photographs have been developed where participants get to study their photographs and capture their narration. They will then study and code their work thematically, based on perceived responsibilities in relation to the trial. The 3rd workshop will be conducted a month after the photo voice activity has completed. We will use some of the photo voice images and the content sourced to design a collaborative video with the 3 family populations we'll be working with.
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