Exploration of traditional beliefs about human immunodeficiency virus and associated stigma among black Africans in the UK: a pilot study with implication for practice in Africa

INTRODUCTION

Globally, 36.9 million people are living with Human Immunodeficiency Virus (HIV) with sub-Saharan Africa accounting for 71% of this burden.¹ In 2016, over 150,000 people were reported to be living with HIV, with Black Africans accounting for the most affected ethnic group in the United Kingdom (UK).² Within the HIV population, Black African heterosexual adults are among the most affected in the UK accounting for 55% of people who heterosexually acquired the viral agent.³ Additionally, the risk of stigmatization is dominant among the many concerns they face. Human Immunodeficiency Virus related stigma which discriminates against people infected by HIV manifests through emotional and/or physical abuse, social exclusion or access issues to education, health or livelihood.⁴ In this study, the population of interest is Black Africans resident in the UK. They represent people of African ancestral background who migrated to the UK from Sub-Saharan Africa.⁵ Traditional beliefs about the cause of HIV have been dominant in Sub-Saharan Africa. One of such issues is the belief that witchcraft causes HIV/AIDS.⁶ One of the earlier studies to attribute the HIV aetiology to witchcraft is the study conducted among the Haya of Tanzania which reported the spread of HIV by Ugandan traders by a so-called ‘Juliana shirt’.⁷ Among the Zulus and Sothos in South Africa, witchcraft-causing HIV was referred to as Idliso and Sejeso respectively.⁸ In the study, these terms translate to poison or poisoning which were transmitted to people through muthi (a medium used by idliso/sejeso) to cause harm and in this case, transmit HIV. This witchcraft construction of HIV was also reported among people who had knowledge about HIV.⁹ Limited knowledge regarding HIV causation may result in violent attacks and killing of supposed witches who were accused of killing people with HIV.⁹ A South Sudan study reported that some people viewed PLHIVs as witches and immoral who must be avoided for safety.¹⁰

Black Africans also belief that HIV is a man-made disease created to discourage sexual behavior and promote racial genocide.¹¹ Furthermore, some traditional beliefs implicate women as the cause of HIV while referring to HIV as a ‘woman’s disease’.¹² There are beliefs by some South Africans that HIV results from failure to observe cultural practices.¹³ For example, a man is said to be at risk of contracting Makgoma (i.e. HIV) if he has sexual intercourse with a menstruating woman, a woman in her first trimester of pregnancy, a woman who has just delivered a baby, or a woman who had an abortion or miscarriage and considered to be unclean.^14-16

HIV is one of the most stigmatized diseases in the world including Sub-Saharan Africa.¹⁷ A South African study involving 487 adults found that people who think spirits are the cause of HIV are more likely to discriminate against PLHIV compared to those who do not.¹⁸ Similarly, a study in Botswana of families with children living with HIV reported that the families were subjected to neighborhood gossip, isolation, and poor treatment.¹⁹ In a different study, women were banned from cooking or participating in daily activities because they were accused of suffering from HIV caused by witchcraft.¹² Among PLHIV, traditional beliefs may result in self stigma. People who believe that HIV is a punishment from God are more likely to express shame than those who do not.²⁰

Stigma also results in poor treatment access, non-disclosure of status, and decreased uptake of HIV screening services among Black Africans.²¹ Human Immunodeficiency Virus related stigma may arise from misinformation and lack of awareness which have negative impacts on Black African communities in the UK.²² Relatedly, cultural factors can shape meanings and misinformation about HIV some of which may be stigmatising. Blacks Africans inclusive of those in the UK are traditional and religious.²³ Their cultural beliefs may influence their health behaviors and practices.²⁴ Thus, it is within reason to assume that a strong link exists between beliefs and health. Although studies have identified the influence of religion on HIV causation and coping strategies among Black African communities,²⁰ there is a dearth of research about the dynamic between traditional beliefs and illness causation theories among Black Africans in the diaspora. For HIV prevention and care interventions to be effective, there is a need to engage with the local beliefs of HIV/AIDS causation and associated stigma. This study was aimed at exploring the influence of traditional beliefs about the cause of HIV and HIV related stigma among Black Africans in the diaspora.

METHODS

A descriptive qualitative methodology was used to explore the influence of traditional beliefs about the cause of HIV and HIV related stigma among Black Africans in the diaspora.²⁵ A qualitative methodology provides an approach that is open to different interpretations which provides depth and richness of data.²⁶

Study population

The study participants were purposively sampled. They were black Africans within Leeds, a city in the North of England, UK. The study included only English-speaking adult males and females over 18 years old who reside in the UK. Black Africans who were born in the UK were excluded from the study because they may have limited lived experience of African traditional beliefs. Three PLHIV and three HIV negative persons were successfully recruited. PLHIVs were recruited to share their experiences about stigma. These participants who once lived in Africa are able to share their experiences on beliefs that existed in the African context. Recruitment support came from BHA Leeds Skyline, an organisation that connected the lead researcher to gatekeepers (local community/religious leaders) of PLHIV.

Data collection

Collection of data was done between June and July 2017 using semi-structured interviews to explore questions around the topic of interest. Semi-structured interviews are flexible and can accommodate unexpected outcomes that may occur during the interview process.²⁷ Research participants were asked open ended questions such as: (I) Would you say there are traditional beliefs about the cause of HIV among Black Africans? Tell me about the beliefs in relation to HIV causation. Each interview lasted between 40 to 60 minutes. Data analysis commenced during the data collection phase.

Data analysis

The information from this study were analysed thematically.²⁸ A verbatim transcription which involved faithfully copying the recorded interview including all errors, pauses, repetitions without tidying up the script was adopted.²⁹ The analysis was iterative with the data visited and revisited in a loop-like process to connect emerging ideas from the data. The researchers familiarised themselves with the data by multiple readings to enable immersion. Next, codes were generated from similar patterns in the data by coding interesting details in a systematic manner. Codes were then developed, using short and descriptive names, highlights, thoughts and explanations in the data.²⁸ A second line of coding was done to link the first codes. Similar codes were combined to form themes that were used to achieve a synthesis of the results and to further allow for the final stage of in-depth analysis.²⁸

Trustworthiness of the study was ensured by prolonged engagement during the interviews to allow the researcher and participants develop a rapport during the interview process.²⁹ Reflective journaling was also done to help the researcher stay absorbed during the data collection and interpretation.²⁹ Peer-debriefings were also done through regular formal communication with an experienced researcher by using face-face tutorials and email communications.³⁰

RESULTS

Three major themes emerged from the coding process (Table 1).

The themes are now addressed:

“…God created disease as a punishment for mankind…”: Punishment from God

A majority of the study participants spoke about traditional beliefs that were associated with different contexts. Five out of the six study participants spoke about the significance of these beliefs among black Africans, however, only two mentioned having an active belief. Paul, a 45-year-old Zimbabwean Christian spoke about his religious values and how he believes that HIV is a punishment from God against those who are gay or engage in extra marital sex. He explained:

“…it[HIV/AIDS] was like a disease of gay people and being a Christian at that time, I also believed that it was God cursing the people for being gay…so if you are in a proper marriage, chances are, nobody will have the HIV in the first place…if I am talking from that Christian perspective, it becomes a punishment because the person that goes out [adultery], you might be affected.”

Similarly, Shammah, a Muslim Social worker from Guinea also gave his opinion on how HIV is caused as result of disobedience to God. He said:

“…I was believing that HIV was a God created disease as a punishment for mankind for not, you know [pauses to contemplate], for not keeping promise to Him by doing fornication, adultery, homosexuality, and you know we have been doing sin so God bring this HIV to punish us.”

In relation to religion and marriage, Grace, a 30-year-old South African Christian who is HIV positive challenged this view. She explained:

“You hear people telling you that they will not test because they are married [laughs out loudly], pardon me laughing really but truly what does that mean? So, HIV can only infect unmarried people? And the thing is many of these people are Africans…one even told me at some point that I am a Pastor so I don’t need to test so you see for this pastor, he believes that you know HIV cannot get to him because he is a pastor… Am I not infected, don’t I believe in the same God?”

“…witches, they can make HIV…”: HIV as related to witchcraft

Four participants in this study spoke about views of HIV being connected to witchcraft. John, an educated entrepreneur who has been living in Leeds for over ten years argued that lack of knowledge is the reason for such belief. He described:

“Even though I have heard people saying that it is women that cause HIV or that it caused from witches…No nono, I cannot believe this…So for me, I will say its people who do not read or who are not educated, mostly but people who are educated, people who are really trained cannot, they can’t have that kind of belief.”

Janet, who admitted to once believing that witchcraft causes HIV noted that such ignorance caused the deaths of many Africans. She blamed such views on lack of knowledge about HIV. In her words:

“Plenty of blacks die because of ignorance, because of saying that they have witched me…people say that…witches, they can make HIV, you see, sometimes even me, that time, I was believe (believed) it (emphatically) that yah, is true that HIV is coming from witches.”

False beliefs about the cause of HIV may result in poor uptake of treatment. Janet added:

“I used to be saying that what is wrong with me is witches that caused it… I did not even start to take medicine because I think it is a witch that cause it and that made me sick.

According to Janet, her belief changed when she received health talks about HIV during her treatment in the hospital.

“hanging on to traditional beliefs thus mistreating people with HIV”: Traditional African beliefs cause stigma.

While sharing their ideas around stigma, participants stressed the effects of traditional beliefs on PLHIV. Some participants especially the PLHIV gave instances of what they went through due to stigma informed by traditional beliefs. Consequently, they also suggested how stigma could be curtailed. Grace, a PLHIV described ways stigma is expressed because of traditional beliefs and how it affected her social interactions. She said:

“It’s very clear, you see, if I believe that you got infected through witchcraft or maybe because God is punishing you, why will I even wanna talk to you?... I have faced stigma first-hand from friends, family and people around me. At some point, some friends stopped talking to me, some even asked me to please not come to their house because they don’t want anything happening to their children.”

Justin mentioned something similar. He said:

“I think obviously there is a strong link … most Africans are ignorant by hanging on to traditional beliefs thus mistreating people with HIV…losing their jobs, getting their houses burnt down, and having their children kicked out of school.”

Shammah added that having HIV is a tremendous challenge often viewed as a ‘death sentence’ as people run away from you or think you are an ‘evil demon.’ Although most participants had knowledge about HIV, they also admitted the effects of traditional beliefs, and called for an intensification in awareness. One of the participants insists that the beliefs should be respected even as more HIV awareness is created. He said:

“…I think in many ways the African culture is a beautiful thing and I think it’s part of what makes us African, but I think not everything that we do, not everything that we believe in is helpful for us as a people…I think the more that people know [about HIV]…the less the stigma…[but] I don’t think we can necessarily need to go around challenging people's traditional beliefs because that just [exhales] you know, you will get pushed back.”

On the other hand, Grace, admitted that more awareness is needed on HIV stigma and related traditional beliefs. She believes a total removal of the traditional beliefs was the best option to reduce stigma. She said:

“…if I have my power, I will erase these beliefs because they cause more problems.”

DISCUSSION

The findings from this study showed that participants had significant knowledge of HIV. Participants’ views may be linked to the concept of critical health literacy. Critical literacy explains how people can gain control and make decisions about health by applying social and cognitive skills to the access, understanding and utilisation of basic health information, which in this case relates to HIV.³¹ However, the traditional beliefs which some of the participants shared may limit their ability to utilise the health information regarding HIV and stigma.

Most of the participants in the study highlighted the views of HIV as a punishment from God for unholy acts such as adultery. Similar to our findings, another study found that some Christians believe HIV is caused by adultery.¹¹ Although only one participant from this study admitted to having this belief, the findings agree with another study which reported that about 53.2% of its participants believed that HIV was a punishment from God and 34.9% believed that PLHIV did not obey the word of God.²⁰ People who are knowledgeable about HIV may hold onto their beliefs and this confirms the significance of religion and spirituality among Black Africans, and their strong influence on understanding diseases.³² This could be because health behaviors are driven by values and religion is a typology of values.³³ This could explain why those who possess HIV knowledge may still attribute HIV causation to religion and God.

This study also showed that witchcraft may be viewed as a cause of HIV. A PLHIV spoke of having this belief in the early years following her diagnosis and how her views changed due to increased knowledge. This finding agrees with other authors who reported that higher HIV awareness lowered the likelihood of associating traditional beliefs with HIV.^34,35 Sometimes, people, regardless of their HIV knowledge, may still believe witchcraft causes HIV and this, along with other traditional beliefs can undermine HIV prevention interventions.³⁶ An example in the study is a participant’s inability to begin HIV treatment despite testing positive because of the belief that her condition was caused by witchcraft.

More so, this study and other studies on traditional beliefs of HIV causation resonates with the concept of victim blaming.³⁷ People living with HIV (PLHIV) are seen to be infected for their flaw, punishment for their misdeeds, or due to witchcraft rather than any other scientifically proven determinant. Victim blaming makes people feel powerless and results in a lack of treatment uptake as found in the study. Although victim blaming is a way for the uninfected to encourage themselves and show they have control, PLHIV are less likely to receive any assistance if they are blamed for their HIV status.

This study also offers insights on how traditional beliefs influence HIV related stigma. All participants in this study, despite their differing traditional beliefs, noted that traditional beliefs exacerbate stigma. This results in social isolation, loss of property/life, poor health access, and poor mental wellbeing. A confluence for this study is that all its participants suggested that to reduce stigma, more awareness needs to be raised to help address these traditional beliefs. Relatedly, the mission of public health professionals is the appreciation of the different explanations of the HIV discourse occurring in communities with the view of engaging them better.³⁸

Therefore, a fight against HIV should not be perceived as an outright fight against these traditional beliefs. This is because to fight against traditional beliefs without better understanding of them as part of the existence of people may alienate any form of cooperation, thereby defeating the entire process.³⁹ This aligns with the concept of lay perspective where the experiential knowledge of lay people equips them in understanding health.⁴⁰ The importance of lay knowledge in planning health interventions remains firm because it ensures sustainability as lay people take ownership of interventions.⁴¹ Therefore it becomes important to not consider people with these beliefs as “passive recipients of a paternalistic professional effort” but as partners in the fight against HIV.⁴²

A call for more awareness is made in this study. To argue that the awareness of HIV has not been effective would be a fallacy as there has been recorded success of this awareness as seen in the knowledge of the participants in this study and elsewhere.⁴³ However, the need for more awareness in relation to traditional beliefs may be blamed on some conventional health communication strategies which are frequently unaware or neglect these beliefs of HIV.¹¹

CONCLUSION

This study identified the existence of traditional beliefs about the cause of HIV within the study context, and this has given insight into the beliefs that still exist in black African communities. Some of these traditional beliefs provide an alternative narrative to the cause of HIV. The study recommends that health interventions should be inclusive of lay people and communities to ensure sustainability. It is therefore important to raise context specific HIV awareness while being conscious of the significance of traditional beliefs to the existence of Africans.

Limitations and future perspectives of this study are the findings are not generalisable but by including PLHIV and non PLHIV, the study was able to elicit insightful findings that are relevant to public health practitioners. This area of research will benefit from larger qualitative studies undertaken with an integrative lay perspective.

Being a student research limited by funding and time, a study conducted over an extended period could offer more diverse findings.

The recruitment of using only English-speaking participants for this study might have limited other traditional perspectives that could have been explored in the African culture.

This offers room for more research as some perspective would have been better captured from non-English speaking participants. However, this study provides a premise in understanding the traditional beliefs which exist even in a developed context.

ACKNOWLEDGEMENTS

The authors acknowledge the Commonwealth Scholarship Commission (CSC) for awarding the first author with a scholarship.

Funding: The authors disclose that the first author was in receipt of a Commonwealth funding to undertake an M.Sc. which led to the conceptualization and publication of this research.

Conflict of interest: None declared

Ethical approval: This study received ethical approval from Leeds Beckett University ethical approval committee as low risk (category 2) research.

REFERENCES

1. 1. Kietrys D, Myezwa H, Galantino ML, Parrott JS, Davis T, Levin T, et al. Functional Limitations and Disability in Persons Living with HIV in South Africa and United States: Similarities and Differences. J Int Assoc Provid AIDS Care. 2019 Jan-Dec;18:2325958219850558.
2. 2. Brown AE, Nash S, Connor N, Kirwan PD, Ogaz D, Croxford S, et al. Towards elimination of HIV transmission, AIDS and HIV-related deaths in the UK. HIV Med. 2018 Jun 20.
3. 3. Seguin M, Dodds C, Mugweni E, McDaid L, Flowers P, Wayal S, et al. Self-sampling kits to increase HIV testing among black Africans in the UK: the HAUS mixed-methods study. Health Technol Assess. 2018 Apr;22(22):1-158.
4. 4. Earnshaw VA, Chaudoir SR. From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures. AIDS Behav. 2009 Dec;13(6):1160-77.
5. 5. Agyemang C, Bhopal R, Bruijnzeels M. Negro, Black, Black African, African Caribbean, African American or what? Labelling African origin populations in the health arena in the 21st century. J Epidemiol Community Health. 2005 Dec;59(12):1014-8.
6. 6. Douglas M. Sorcery accusations unleashed: the Lele revisited, 1987. Afr; 1999;69(2): 177-193.
7. 7. Lyons M. Western and Northern Tanzania. In: Setel PW, Lewis M, Lyons M, eds. Histories of sexually transmitted diseases in Sub-Saharan Africa. Westport, CT: Greenwood Press; 1999: 97-118.
8. 8. Ashforth A. Witchcraft, violence, and democracy in South Africa. University of Chicago Press; 2005.
9. 9. Mshana G, Plummer ML, Wamoyi J, Shigongo ZS, Ross DA, Wight D. ‘She was bewitched and caught an illness similar to AIDS’: AIDS and sexually transmitted infection causation beliefs in rural northern Tanzania. Cult Health Sex. 2006 Jan-Feb;8(1):45-58.
10. 10. Allen, Witchcraft T. sexuality and HIV/AIDS among the Azande of Sudan. J East Afr Stud. 2007;1(3):359-96.
11. 11. Dickinson D. Myths or theories? Alternative beliefs about HIV and AIDS in South African working class communities. Afr J AIDS Res. 2013;12(3):121-30.
12. 12. Shirindi ML, Makofane MDM. Ritual impurities: Perspectives of women living with HIV and AIDS. Afr J Phys Health Educ Recreat Dance. 2015;21(32):941-52.
13. 13. Delius P, Glaser C. Sex, disease and stigma in South Africa: historical perspectives. Afr J AIDS Res. 2005;4(1):29-36.
14. 14. Semenya, Kwena, Letsosa R. A pastoral investigation of the phrase ‘traditional purification’ as the last phase in the process of bereavement mourning amongst the Basotho. 2011;32(1).
15. 15. Beinart W, Brown K. African Local Knowledge and Livestock Health: Diseases and Treatments in South Africa. 1st ed. Boydell and Brewer Ltd; 2013.
16. 16. Medeossi, BJ., Stadler, J. & Delany-Moretlwe, S. ‘I heard about this study on the radio’: using community radio to strengthen Good Participatory Practice in HIV prevention trials. BMC Public Health. 2014;14:876.
17. 17. Simbayi LC, Kalichman S, Strebel A, Cloete A, Henda N, Mqeketo A. Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa. Soc Sci Med. 2007;64(9):1823-31.
18. 18. Kalichman SC, Simbayi L. Traditional beliefs about the cause of AIDS and AIDS-related stigma in South Africa. AIDS Care. 2004;16(5):572-80.
19. 19. Dahl B. Beyond the blame paradigm: rethinking witchcraft gossip and stigma around HIV-positive children in South eastern Botswana. Afr Hist Rev. 2012;44(1):53-79.
20. 20. Zou J, Yamanaka Y, John M, Watt M, Ostermann J, Thielman N. Religion and HIV in Tanzania: influence of religious beliefs on HIV stigma, disclosure, and treatment attitudes. BMC Public Health. 2009;9:75.
21. 21. Burns FM, Imrie JY, Nazroo J, Johnson AM, Fenton KA. Why the(y) wait? Key informant understandings of factors contributing to late presentation and poor utilization of HIV health and social care services by African migrants in Britain. AIDS Care. 2007;19(1):102-8.
22. 22. Shangase P, Egbe CO. Barriers to accessing HIV services for Black African communities in Cambridgeshire, the United Kingdom. J Community Health. 2015;40(1):20-6.
23. 23. Sewell J. Overcoming barriers to HIV testing in the UK: Lessons from Kenya, Zimbabwe and South Africa. HIV Nurs. 2013;13(4):16-21
24. 24. Spector RE. Cultural Diversity in Health and Illness. J Transcult Nurs. 2002;13(3):197-9.
25. 25. Lambert VA, Lambert CE. Qualitative descriptive research: An acceptable design. Pac Rim Int J Nurs Res. 2012;16(4):255-6.
26. 26. Saunders MN. Choosing research participants. Qualitative Organizational Research: Core Methods and Current Challenges. Sage. 2012;35-52.
27. 27. Whiting LS. Semi-structured interviews: guidance for novice researchers. Nurs Stand. 2008;22(23):35-40.
28. 28. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res in Psych. 2006;3(2):77-101.
29. 29. Houghton C, Casey D, Shaw D, Murphy K. Rigour in qualitative case-study research. Nurse Res. 2013;20(4):12-7.
30. 30. Connelly LM. Trustworthiness in Qualitative Research. Medsurg Nurs. 2016;25(6):435-6.
31. 31. Corcoran N. Working on Health Communication. London: Sage Publications; 2011.
32. 32. Daaleman TP, Kuckelman Cobb A, Frey BB. Spirituality and well-being: an exploratory study of the patient perspective. Soc Sci Med. 2001;53(11):1503-11.
33. 33. Bowden J, Manning J. Attitudes, values and health behaviours. Health Promotion in Midwifery: Principles and Practice. 2nd ed. Routledge; 2006: 62.
34. 34. Sano Y, Antabe R, Atuoye KN, Hussey LK, Bayne J, Galaa SZ, et al. Persistent misconceptions about HIV transmission among males and females in Malawi. BMC Int Health Hum Rights. 2016;16(1):16.
35. 35. Tenkorang EY. Myths and misconceptions about HIV transmission in Ghana: what are the drivers? Cult Health Sex. 2013;15(3):296-310.
36. 36. Tenkorang EY, Gyimah SO, Maticka TE, Adjei J. Superstition, witchcraft and HIV prevention in sub-Saharan Africa: the case of Ghana. Cult Health Sex. 2011;13(9):1001-14.
37. 37. Watt RG. From victim blaming to upstream action: tackling the social determinants of oral health inequalities. Community Dent Oral Epidemiol. 2007;35(1):1-11.
38. 38. Kunda J, Tomaselli KG, Lagerwerf L, Boer H, Wasserman H. Social representations of HIV/AIDS in South Africa and Zambia: Lessons for health communication. Health Communication in Southern Africa: Engaging with Social and Cultural Diversity. 2009;11:93.
39. 39. Gausset Q. AIDS and cultural practices in Africa: the case of the Tonga (Zambia). Soc Sci Med. 2001;52(4):509-18.
40. 40. Tones K, Green J. A Review of: Health Promotion: Planning and Strategies, J Health Communication. 2004;2(5):507-10.
41. 41. Springett J, Owens C, Callaghan J. The challenge of combining ‘lay’knowledge with ‘evidence-based’practice in health promotion: Fag Ends Smoking Cessation Service. Crit Public Health. 2007;17(3):243-56.
42. 42. Taylor P. The lay contribution to public health. Open University Press; 2007.
43. 43. Halperin DT, Mugurungi O, Hallett TB, Muchini B, Campbell B, Magure T, et al. A surprising prevention success: why did the HIV epidemic decline in Zimbabwe? PLoS Med. 2011;8(2):1000414.