title: How acceptable is it for HIV positive African, Caribbean and Black women to provide breast milk/fluid samples for research purposes?
abstract: BACKGROUND
  The African, Caribbean and Black communities have been found to be reluctant to participate in health research in North America. This is partly attributed to historical experiences as well as their cultural beliefs. Cultural beliefs about the uses of breast milk/fluids could further hinder the participation of African, Caribbean, and Black communities in research involving the collection of breast milk/fluids samples.
  
  
  METHODS
  We conducted 17 in-depth interviews and three group interviews (n = 10) with HIV+ African, Caribbean and Black women living in Ontario, Canada to explore their cultural beliefs about breast milk/fluids and their acceptance of participating in research that involves the provision of breast fluid samples.
  
  
  METHODS
  Qualitative study involving in-depth interviews.
  
  
  RESULTS
  Our respondents believed that breast milk/fluids should be used for infant feeding and for curative purposes for a variety of children's health ailments as well as ailments experienced by other family members. The cultural belief that breast milk/fluids could be used to bewitch the baby and mother and the perception that it is intrusive (equating breast milk/fluids research to DNA testing), could prevent African, Caribbean and Black women from participating in research involving the collection of breast milk/fluids. Despite these fears, some respondents expressed that they would participate if the research results would benefit them directly, for example, by finding a cure for HIV, enabling HIV+ mothers to breastfeed, or contributing to developing new drugs or vaccines for HIV. Women's recommendations to facilitate successful recruitment included giving incentives to participants, and employing a recruiter who was trustworthy, informed, and culturally sensitive.
  
  
  CONCLUSIONS
  Cultural beliefs could present barriers to recruitment and participation of Africa, Caribbean and Black communities in health research involving breast milk/fluid samples. Successful recruitment for future studies would necessitate researchers to be culturally aware of the beliefs held by African, Caribbean and Black women, to build trust, and use an appropriate recruiter. While the findings relate to breast milk/fluids, the suggested recommendations for facilitating recruitment of research participants from these communities may be useful to consider when recruiting ethnically and culturally similar participants for research involving biological samples.
authors.affiliation: Department of Health, Aging and Society, McMaster University, 1280 Main St. W., Hamilton, ON, L8S 4M4, Canada. kapirir@mcmaster.ca.
authors.forename: L
authors.identifier: http://orcid.org/0000-0002-1237-6369
authors.initials: L
authors.lastname: Kapiriri
authors.affiliation: Women's Health in Women's Hands, Carlton Toronto, ON, M5B 1J3, Canada.
authors.forename: W
authors.initials: W
authors.lastname: Tharao
authors.affiliation: Women's Health in Women's Hands, Carlton Toronto, ON, M5B 1J3, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Muchenje
authors.affiliation: Women's College Hospital, Toronto, ON, Canada.
authors.forename: I M
authors.initials: IM
authors.lastname: Khatundi
authors.affiliation: Africans in Partnership Against AIDS, 314 Jarvis Street. Suite 101, Toronto, ON, M5B 2C5, Canada.
authors.forename: F
authors.initials: F
authors.lastname: Ongoiba
mesh_terms: D000328:Adult; D000349:Africa; D001741:Black or African American; D001294:Attitude to Health; D044383:Black People; D001942:Breast Feeding; D017691:Caribbean Region; D003466:Cultural Characteristics; D005006:Ethnicity; D005260:Female; D006679:HIV Seropositivity / Q000208:ethnology* / Q000628:therapy*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008875:Middle Aged; D008895:Milk, Human; D009864:Ontario; D010358:Patient Participation; D036301:Qualitative Research
keywords: Afro-Caribbean and Black women; Breast milk/fluid samples; Cultural beliefs; Participation in research; Racial/ethnic groups