Issues management,

[Erica]

Hi all,

I would like to get some ideas on how to manage a situation where a volunteer who come at the clinic for screening, willing to take part in the trial, but he is not eligible, then he goes out in the community speaking negatively about the trial and a  result enrolled participants avoid coming for their subsequent visits, and those at screening stage get scared,  what do you do, how do you go about working out the situation!

Topic

[Erica]

Thank you Terfa and Anne, for great suggestions, as a site we are discussion to have more discussion forums with media personnel and if possible we would like to have at least one of them in CAB to  expand the range of communication and education also whenever we plan to have a press conference or similar event it will be easier to reach them.

[Anne]

Interesting thread!

Erica, this is such a great example of an issue or allegations that threatens to stigmatize trial participants or undermine support for a trial — and potentially on a broad level.

A trusted media partner, like Terfa suggests, is a great resource for ensuring that accurate messaging is disseminated in the community! You can also engage the CAB, key leaders, and other trial sites to prepare Q&As –materials that outline these crucial questions or issues, so you have responses that are already written out in advance. You can even consider pre-testing your responses or messages with your trial participants to ensure that they are clear and understandable.

[Terfa Simon]

@Erica, This just happened to us at the site. The best way is to identify the authentic success of information for any  community and saturate that source or sources with accurate and up to date information such that the opinion of a negative deviant will be investigated by the people who are gate keepers and have the influence to speak in your favour.

If the population is an urban heterogeneous environment, the media will be the best place to saturate with quality and up to date information. If the community is homogeneous then you need to  saturate the leadership with saturate with accurate and up to date information.

We only interviewed the people within his circle of influence and saturated them with accurate information and the situation was addressed naturally.

[Erica]

Hi Guys,

Sorry for just coming back  this late, I had no access to network for some days.

Thank you Jessica , Nokulanga and Charles  for your contribution for future trials we are planning to conduct seminars for health care providers in the study catchment area especially about VISP and other basics related to participation in HIV vaccine trial, There was a time we tried to invite traditional healers in our stake holders engagement meetings they did not come, maybe we use a different approach or may be try joining their meeting if they have meeting. I have been also thinking about engaging football clubs at community level, thou is sort of difficult but in guess is possible since most of youths (males) like soccer.

Charles, Thank you for sharing your  experience.

Erica

[Charles]

It is critical that once participants are enrolled in a study every effort should be employed to ensure  they complete their study visits. Going forward it would be helpful to implement GPP during protocol development for these anticipated events with stakeholders by developing a communication and issues management plan.

We had a similar incident where participants who seroconverted during the study blamed the site for infecting them and attempted to sue. We engaged the CAB and reached out to participants to allay the fear that their participation in the study will result in HIV infection. This GPP course has now taught us that issues that are anticipated should be planned for in communication and issues management plan.

[Nokulunga]

I was also thinking of Local clinics and Traditional healers involving them as part of community stakeholders is important because it is common that after a participant has received results from the research clinic, most of them go to local clinics for another tests and some even go to traditional healers who usual treat the matter differently because of their knowledge and understanding of HIV.

[Anonymous]

This is an excellent conversation! I would  encourage you to think about other resources in addition to CABs. CABs are connected to the community but it may also make sense to invlove a specific small group of key stakeholders that can discussion with the broader community the process and procedures of the research site.

[Erica]

Thanks Nokulanga for a good advice, This scenario happened to our site several years ago, actually it was the CAB member of that are who come to notify the clinic that  this was the reason people were  reluctant to come for their schedule visit. The man was screened out due to his HIV status and it seems he did not expect that result as he had tested somewhere about two months earlier  and he was free from infection (probably he was in window period). So he was telling people that our test give false results.  we sort of managed the situation by inviting all participant  enrolled and those on screening for a long discussion and  we conducted a community meeting  but like you have said we did not reach everyone and due to this we lost some potential participants who believed his story.

[Nokulunga]

I think the most important thing is to find out what might have been the reason for her ineligibility and from there, involve CAB where the participant is coming from because CAB members know the community and they understand everything happening in the community. Community events can also be a great step to address all the myths and misconceptions because by community events you not only targeting a certain number of people but community as a whole.

[Author]

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