Table 2

List of key community concerns related to participation in the Mwanza feasibility study and MDP301 trial

Feasibility study

MDP301 clinical trial

Issue (ranked in order of priority)

Comments by workshop participants (Sep 03 -- Mar 04)

Issue (ranked in order of priority)

Comments by workshop participants (Oct 06 -- Feb 07)

1. Blood taking

'why do you take so much blood every time?'

1. Allowances/reimbursal for participation

'life is becoming expensive and allowances are not enough -- why can't they be raised?'

'blood might fall into the wrong hands and be sold for witchcraft purposes'

'some of us have not received project T-shirts but others have already got theirs'

'we are supposed to get a soda and a snack when we arrive at the clinic but sometimes we are not given'

2. Allowances

'we are losing money when we come to clinic'

2. Range and quality of services provided

'staff sometimes don't listen as much as they could'

'clinics start late and are taking too long -- we spend the whole day there'

'we want to bring our children when they are sick'

'why can't you treat simple things like malaria?'

'are the lab tests trustworthy? Why are [HIV] tests not in little envelopes like before?

'why are some lab results not available when we come back to clinic?'

'what will happen once I finish [the trial] -- can I still get service at the study clinic?'

3. Speculum examinations

'how do we know the speculum is safe [clean]?'

3. Blood taking

'they are taking too much blood -- every time two bottles'

'after the blood test my heart was irregular for one week'

'one time after blood was taken I had pain in my arm for three days'

4. Range and quality of clinical services provided

'why can't we bring our children to the clinic when they are sick?'

4. Stigma

'people think that the bags [given to all participants at screening] used to collect gel must be for ARVs and that we must be positive'

'you should treat malaria and fever in children'

'the community is doubting that all those who join the project are HIV negative... we guess at least 40% should be positive'

'our men don't like to go to hospital [for STI treatment] - why can't we bring them to the clinic'

'sometimes we wait a long time to be seen'

'some tests take a long time to come back'

'I went [to another clinic] and got my result straight away after I had already waited a long time for my result from your clinic'

'how can you help me if I am/become HIV positive?'

5. Stigma and confidentiality

'people think that clinics are only for people who are HIV positive'

5. Issues related to study gel

'the gel increases wetness... makes men think there is some abnormality'

'my photograph might appear in the newspaper with my HIV result'

'the project needs to provide information to men... to educate them about gel'

'what will happen if gel is effective; will study volunteers get a supply?'

Vallely et al. BMC Medical Ethics 2009 10:17   doi:10.1186/1472-6939-10-17

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