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The strategies that we use to ensure that stakeholder motivation remains constant and sustainable even in-between trials is that we make sure that we support their plans for community engagement for example at the beginning of every year at the NGO forum meetings we exchange event calendars for each organisation. we also offer support where needed in regards to their scheduled health campaigns. this year we partnered up with brothers for life and the Centre for Creative leadership (CCL), Chaps, The centre for HIV and AIDS Prevention Studies (CHAPS) and New start. the purpose of the event was to promote Medical male circumcision (MMC) and also to get the community to know their HIV status by voluntarily testing for HIV. SRCs contribution was to educate about HIV and co infections and clinical trials and also the distribution of condoms and education about condom use.
This also helps when we conduct our own community engagement campaigns e.g WAVD the above mentioned organizations gave us support by adding value to our event and also assisting in the marketing of the event.
1) What is your experience with stakeholder mapping? How do you use stakeholder maps at your site? Discuss how you (and your colleagues) determine the importance of involving one stakeholder versus another. For example, how do you determine who constitutes your CAB?
In the beginning of FEM-PrEP study, we identified community stakeholders who would be relevant to engage for the purpose of the study. The study population was women who exchange sex for money/goods. During mapping, we conducted questionnaires with community members and stakeholders for more information to aid our recruitment strategies, CAB selection, and other aspects of the study we were about to conduct (FEM-PrEP).
As mentioned above, stakeholder maps assist the site to understand the target population for the study before implementation. Information such as where the target population may be found for recruitment purposes, what aspects to consider during recruitment and during study procedures. We also identified and communicated with the stakeholders that work with the target population.
To determine which stakeholder to choose against the other, we looked at the diversity of CAB that existed that time and identified the gaps. In doing so, we learnt that we also needed, for example, a CAB member who represents the target population, we did this in order to learn more about the population. Current CAB members in recent studies constitutes of various representatives such as gay and lesbians, priest, health professionals, politicians, taxi associations, etc. However, we identified a gap, we need to find a CAB member who will represent traditional healers.
2) Stakeholder engagement is not easy and multiple partnerships can be hard to manage. How can you partner with stakeholders to create a community of sustained engagement? How can you get members of your research team to “buy-in” to sustained or longer-term stakeholder partnerships?
Strategical partnerships are key to stakeholder engagement. Each partners should fulfil a specific function in order to meet our community engagement objectives
Treatment Action Campaign (TAC):
This is an advocacy group that can influence the decision making process by public sector in regards to human rights and health issues (HIV and TB treatment etc.) our partnership with this group brings us closer to various population within our community such as LGBTI, youth and disadvantaged people. We gain insight into possible barriers that can stop the communities buy in into clinical research. With that information we can create appropriate strategies on how to engage and educate those publics
NGO forums:
These forums are created by and governed by the respective NGOs register and not registered and also the local district. These assists the site and other organisations to communicate with a broad audience at the same time when monthly forum meetings are in session. Each organisation is given a slot to present s or inform the group should a need arise.
We use this opportunity to inform/update our stakeholder about recent developments at site, studies: upcoming studies, result dissemination, campaigns and educational programs. This also helps us not to duplicate other organisations activities such HIV, TB, Contraceptives and campaigns. As a result we end up partnering and sharing programs with stakeholders instead of competing.
Wen we were conducting community engagement in our community we realised that the is an educational gap about research when it comes to our health service providers specifically professional nurses. this has led us to structure our community engagement/education plan to continuously educate nurses and also student nurses about clinical trials and ethics involved in clinical trials ( this group is was the most influential group to discourage the community from participating in clinical trials). This strategy has helped us to reduce misconceptions about clinical trials and participating in clinical trials it has also helped with recruitment as nurses have become willing to refer participants to our site.
A secondary and yet equally important benefit is the ability to community with different populations within our community such as LGBTI, religious and traditional groups that do not believe in modern medicine. we are now aware of the expected challenges and how we can overcome them as we are slowly building trust with the above mentioned groups.
LGBTI: we managed to receive a training session for all staff from an LGBTI representative (OUT well being clinic) on how to engage the LGBTI community the different identities within the LGBTI community, sex as a form of identity and as an act.
Religious groups: the first challenge we encountered was gender inequality, abuse and violence for example 14 year old girls being made to drop out of school and forced into marriage.
women being discouraged to seek out contraceptives as well as medical services without the supervision/consent of a male
Traditional healers. their still traditional healers who advocate for HIV being a whit mans disease and that they can cure it. in most cases they classify HIV symptoms for that of a ritual,ethnic or ancestrally calling that requires for the person to become an initiate to be a traditional healer.
Misinformation-we often deal with community members who lack information regarding clinical trials. Most of the issues we have dealt with are related to:
1. HIV infections -if a participant sero-converts while participating or if someone spreads rumours, communities may believe that the site is infecting people with HIV.
Sero-converters are referred to support groups on site however their other various support groups even though they are not widely known and also not very well funded as researchers we do have an obligation to the community in terms of empowering our participants ant their friends and family as they are one of our key stakeholders
2.Reimbursement – communities may believe that it is used to lure people into giving their specimens and blood samples for other purposes not know to them.
All these obstacles can only be addressed through continuous community education meetings, community workshops and campaigns. It is crucial as a site to target participants more as they are the first people to experience what the study is all about. Events such as chilling sessions(informal or casual discussions with participants without any clinic procedures, these are held on weekends with all study participants) are quite helpful to identify and address myths and misconceptions regarding the site and current studies.
