All the respondents and group participants, with the exception of three, were immigrants from either Africa or the Caribbean. Their ages ranged from 30–60 years (all with the exception of two, were below the age of 40, and had children within 10 years prior to the study).
The results section is organized in the order of the study objectives. Illustrative quotes from the interviews are provided, where appropriate. Synonyms used include: G: Group Interview (I, II, III); R: Individual interview (numbers were arbitrarily assigned).
1. Uses of breast milk/fluids: cultural perspectives
All interviewees, with the exception of one, had children whom they had breast fed; and so were conversant with the cultural beliefs about the uses of breast milk/fluids. The most common and acceptable use of breast milk/fluids was infant feeding. Therapeutic uses of breast milk/fluids were also described in which breast milk/fluids were used for the treatment of baby’s ear, eye or for the treatment of genital infections, and nasal congestion. In a few interviews, breast milk was said to provide a cure for alcoholism. Combining breast milk with alcohol was described as causing severe nausea, which then prevented an alcoholic from ever desiring alcohol drink again. In this context, the importance of limiting breast milk to therapeutic use by the core (nuclear) family was emphasized, based on the perception that use outside the family could cause harm to the mother or the infant. As illustrated by the following quote, using it outside the family increased the potential for malevolent use.
“…If you use it outside the family… we believe that someone can do bad things by witchcraft…because witches they use different things …so you have to use it in the family…you can’t use it outside the family…” (G II)
Beliefs about using breast milk/fluids for research
In most interviews, the respondents’ acceptability of providing breast fluid samples for research purposes was offset by reservations tied to cultural beliefs about breast milk. Moreover, their acceptability of participating was related to an understanding of the potential usefulness of research.
“…We should help the researchers….”
Most of the respondents said that they, and their “communities”, would provide samples since they have gained understanding of research, its purposes, and potential benefits. They also felt well protected by the legal system in Canada. With regards to understanding research, the respondents reported that since coming to Canada, the exposure and their participation in many research studies has provided them with a better understanding of research generally, and thought it relevant for them to support researchers.
“…I remember when HIV started…many people did not want (to hear) about research…but now more people are open to research coz they give information on HIV. People now are (more) familiar with research…” (R3)
“…it is very important to help the people who do the research to know….maybe if a mother has HIV….that’s how they know…” (GI)
The second reason for their acceptability was the potential benefits of the research. The respondents recognized the fact that most of the progress made in discovering the HIV virus and treatment has been based on research. Respondents reported that the people living with HIV, are eager to have a cure; “…to make HIV history…” Specifically, they would be motivated to participate if the purpose of the research is to develop an intervention that would enable the women to breast feed their children despite their HIV status.
“… If it’s not the research they would not have known…If the medication they give people living with HIV to reduce the virus from developing in the blood (is effective)…if we hadn’t taken the blood tests…they would not know, research is very important…” (R4)
The third explanation was quite interesting and clearly demonstrated that the respondents have been sensitized and are aware of their rights as study participants. They said they would be more inclined to participate in research within Canada as compared to their home countries, since in the Canadian context, it is unlikely that their rights, as study participants, would be abused.
However, a few respondents had reservations. We discuss the few variant responses in detail.
“…What if someone bewitches me?
A sample of women expressed fear about providing breast fluid samples. This was grounded in their cultural beliefs that someone could take the samples under the pre-text of research and use it to bewitch and cause harm to the baby and/or the mother. Respondents thought that the chances of this happening would be greater if they were in their home countries where they are known. In such cases, the only people they would trust would be the health workers, who they assumed, would not know them personally. Within the Canadian context (or when away from “home”), the fear of providing breast milk/fluids for research purposes still existed, but was downplayed due to the anonymity that being an immigrant gave to the potential participants.
“…I think especially back home people believe in so many things…in Africa you know… witchcraft…so if somebody comes and asks you for your breast milk…someone will say…mmh he wants to go and do something with it to bewitch me. But if I’m here in Canada and somebody comes and says I am doing a study and I am looking for women to give me some of their breast liquid..and I know it’s a study…there are many studies here… for example research to get medication for cancer or for HIV…so I don’t refuse if I am in this country (Canada). So it depends…for me now if I am back home and somebody come and ask me as long as the person is a medical nurse then I’ll know she is really doing it for research..I don’t see a reason why I will refuse…but my community will not think that way… they will refuse because they have this mind that you will go and use it for witchcraft…” (RI)
One respondent reported that some women may fear providing samples because they are worried about being “exposed” to the public. According to this respondent, these people regard breast milk/fluids as “private and personal”; hence, giving breast milk/fluids samples could be compared to giving their DNA. So providing breast milk/fluids for research purposes carries the possibility of exposing participants to the public, which was invasive and undesirable.
“…Ooh I don’t think anybody will go handing over samples of their breast milk/fluids….yah I don’t think anybody would agree to that….yah…it would be kind of invasive I think it is kind like giving out your DNA…yah…” (R2)
The other fears expressed with regards to participating in such a study related to the recruitment strategies and if the participants’ HIV status would unknowingly be revealed. Some participants thought that the possibility of people finding out the participants’ HIV status would scare potential participants. For example, a study advertisement that specifically said they are recruiting HIV positive women—had the potential to reveal the participants’ HIV status, especially if conducted in an “unsafe” environment. Another source of fear related to individuals discovering their HIV status through their participation in the study. There was a concern that some people do not want to know their HIV status; therefore a study on breast milk/fluids might reveal their HIV status to them, with the attending consequences, as expressed in this quote:
“….. maybe someone in the community don’t want to know about their HIV status because they feel it will make them unhappy, stressed, traumatized or depression so they prefer not to know…if I know nothing, I can live long with my virus. They don’t want(to know) because it will make them scared. It will make them feel stigmatized or discriminated…” (R4)
Furthermore, one respondent reported the possibility of peer influence whereby if one person refused to participate in such a study (due to misunderstanding of its purposes), they could easily influence others within their communities, misinform them and advise them not to participate.
“…They will not accept…I just know they will not accept…I don’t know if it is not understanding…or it is because we are still behind…even someone I know will tell others…that if you participate…you will get breast cancer…don’t participate…they will just look for reasons…" (R6)
We followed up with the respondents who said it was acceptable to participate in a study involving providing breast fluid samples by asking them to provide their advice with regards to making such a study culturally appropriate and feasible.
2. Practical advice for collecting breast milk/fluids: the women speak out
The respondents provided practical advice with regards to obtaining biological samples from their communities. Their advice can be summarised under 3 categories: (i) The need to foster understanding about the benefits of the research; (ii) Recruiting and motivating participants (iii) Practicalities of sample collection. We explain these in detail below:
i. The need to foster understanding about the benefits of the research
Given the potential for misunderstanding, the participants recommended that community education about the study should precede the recruitment of individual participants. This education would prevent individuals from misinforming others and discouraging them from participating. Such an approach was perceived to be the best way for researchers to enter into these communities when conducting a study which may be culturally sensitive. The participants explained that lack of understanding creates suspicion that deters people from participating.
“…before you go and ask for each and every person for their milk you have to call them for a meeting and explain the reason why you are doing the study (R7)…”
The respondents emphasized the need to highlight the potential benefits of the study. Examples of potential benefits that would motivate the study participants included: finding a cure for HIV, enabling HIV+ mothers to breastfeed, and contributing to developing new drugs or vaccines for HIV. These ideas are evident from the following quotes:
“…they (the communities) are eager for medication to be found and HIV to become history…because many have perished because of HIV…” (R5)
“…if you tell them you are doing a research to find out if it is possible for HIV (+ mothers) to breast feed, everybody will be willing to take part because some are HIV + and they don’t have money and they want to breast feed so I don’t think they will have a problem with that…” (R6)
After establishing the motivators for participating in a breast fluid study, participants also proposed strategies for recruiting participants.
ii. Recruiting and motivating participants
Respondents emphasized the need for women to be able to trust the person who is recruiting them into the study. The attributes of such a person included: a female, someone who is known and ‘respected’ in these communities (a doctor or a health worker who already works with the women). The preference for the health worker partly related to their anonymity and the already existing relationship.
The recruiter should also be ethnically “relevant” to the communities. Participants would prefer someone who understood their culture and “context”. Some suggested having a recruiter from that given “community”—since “…it is easier to trust such a person…” This person should know (and “understand”) not only the research topics, but also the social and cultural “worlds” of the HIV+ ACB women participants.
“…yah like HIV (people) they know their own people…you use that person…and people who work in the field…because they have a lot of trust…” (R3)
“… definitely it should be a woman who can explain…what she wants the samples for. She should understand them (the participants)…the group that she’s going to deal with because there are different classes; low class, middle class, high class. She should know the group that she is targeting…and have the right words…” (R8)
However, that idea was not acceptable to all respondents since a few thought using someone from within the communities would threaten their anonymity.
Recognizing the opportunity costs for participating in the study, participants recommended that the women should be compensated for their participation, for the time they spend and the fact that the researcher “benefits” from the research.
iii. Practicalities of sample collection
Respondents were asked about practical tips they would give to someone who would like to succeed in conducting a study involving collecting breast milk/fluids. They emphasized the importance of the location where the samples would be collected and the person responsible for collecting the samples.
With regards to the locations, all the respondents agreed that a “good” community health centre or hospital would be most appropriate. These were places that are familiar with and routinely provide services for the HIV+ women. The timing of collecting the samples was also important. The respondents advised that the samples should be collected around the time the woman starts to produce colostrum and when she woman needs to come to the health unit for routine check up. Using the usual places and time would also reduce the potential for stigmatization and the inconvenience for the women.
“…you have also to choose a hospital or community health centre. Then they will know that this is for research. The place is very important, a hospital and community centres…” (R3)
“….are they going to collect it(breast milk/fluids) in the hospital where the mother is…that’s different but once she’s gone home and telling them to come back for(collecting the sample)….it doesn’t make sense…” (GI 6)
Respondents also emphasized the importance of having the “right” person collecting and/or supervising the collecting of the samples. According to participants, this person should have characteristics similar to the recruiter described above.