Applied Research and Evaluation HIV/AIDS STIGMA AND PERSONS LIVING WITH HIV/AIDS IN RURAL GHANA* PATRICIA ANAFI The State University of New York at Potsdam WISDOM KWADWO MPRAH Kwame Nkrumah University of Science & Technology, Kumasi, Ghana EBENEZER ASIAMAH Dangme East District Health Administration, Ghana Health Service, Ada-Foh
ABSTRACT
This qualitative study investigated community and family members’ perceptions and attitudes toward persons living with HIV/AIDS (PLWHAs) in rural Ghana and how PLWHAs viewed themselves. The purpose was to provide insights into the nature and extent of HIV/AIDS-related stigma for program and policy interventions. Interviews and focus group discussions examined the stigma. Seventy-four participants 18 years and above (60 community members, 10 PLWHAs, 2 family members of PLWHAs, and 2 HIV/AIDS counselors) participated. Results showed that PLWHAs experienced various forms of negative perceptions, were stigmatized by community and family members, and held strong negative views of HIV/AIDS, which negatively affected the way they lived. To reduce HIV/AIDS related stigma in rural areas, HIV/AIDS education programs that call for strong community and family member support for PLWHAs are essential. *This article was developed from an original research report: HIV/AIDS Related Stigma and Community Members’ Attitude and Behavior Towards Persons Living with HIV/AIDS in the Dangme West District: A Final Report of the Study Funded by the Ghanaian-Dutch Collaboration of Health Research and Development. Submitted in March 2005, Dodowa Health Research Centre, Ghana Health Service. Int’l. Quarterly of Community Health Education, Vol. 34(3) 269-282, 2013-2014 Ó 2014, Baywood Publishing Co., Inc. doi: http://dx.doi.org/10.2190/IQ.34.3.e http://baywood.com 269
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INTRODUCTION Human immunodeficiency virus infection/acquired immunodeficiency syndrome (HIV/AIDS)-related stigma refers to the prejudice directed at people perceived to be infected with HIV and at individuals, groups, and communities with whom they are associated [1]. Although stigma associated with diseases has existed for a long time, the stigma attached to HIV/AIDS has been very pronounced. In many societies AIDS is perceived as a disease of shame, and people living with this disease have experienced various forms of discrimination. They are denied basic necessities such as medical care and housing, rejected by families and forced to leave their occupation [2, 3]. HIV/AIDS-related stigma can lead to isolation, to the extent that PLWHAs no longer feel part of the community they belong to and have difficulty accessing services and support. For example, there are instances where PLWHAs were reluctant to seek healthcare because of fear of discrimination and blame [4, 5]. HIV/AIDSrelated stigma can also lead to unsafe sexual practices, loss of self-worth, and self-hatred [6, 7]. In many countries in sub-Saharan Africa, HIV/AIDS is normally perceived as a consequence of sexual immorality and, therefore, individuals infected with HIV are considered responsible for acquiring the disease. In some cases, HIV infection is perceived as a punishment that God brings upon perpetrators of immoral behaviors like prostitution, promiscuity, drug use, or homosexuality [8, 9]. The fear related to HIV/AIDS, being infected with HIV and living with the disease and its imminent death, as well as cultural and religious prescription against sexual immorality that are linked to HIV infection are the major causes of HIV/AID stigma in sub-Saharan Africa [10, 11]. In Ghana, widespread negative attitudes and behaviors toward persons living with HIV/AIDS exist in communities and among families of infected people [9, 12]. Often, communities and family members shun or gossip about those perceived to have HIV infection or AIDS. In most instances, stigma takes the form of complete abandonment [13], indicating the extent of the negative social impact of the disease on persons living with HIV/AIDS. Though HIV/AIDS stigma broadly exists in Ghana, little is known about how HIV/AIDS-related stigma manifests in rural communities, and how persons living with HIV/AIDS in rural areas perceive the AIDS disease and themselves. This study was undertaken to understand the nature and extent of HIV/AIDS-related stigma in the rural Dangme West district of Ghana and its impact on individuals living with HIV/AIDS. Specifically, the study done in 2004 sought to determine community and family members’ views, attitudes, and actions toward PLWHAs and how PLWHAs perceive themselves and the disease.
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MATERIALS AND METHODS Study Area The Dangme West District is a rural district in the Greater Accra Region of Ghana. The Greater Accra region is one of the 10 regions of Ghana and located in the southern part of the country. The Dangme West district has a population of 122,836 based on the 2010 National Population and Housing Census Data and a land size of about 1,700 square-kilometers [14]. It lies in the coastal savannah, inhabited by the Ga-Adangme ethnic group. The residents of this district have cultural beliefs that impact on their views of the etiology of diseases and ill-health and their responses to HIV/AIDS as an illness. Interpersonal relationships in the district require a lot of close contact— such as eating from the same bowl, which residents deemed as dangerous to do with PLWHAs [15]. The district shares borders with the Eastern region—the region with the highest HIV prevalence rate in Ghana. Residents with HIV/AIDS sought care in a district hospital that is located in Dodowa, the district capital, and from four other hospitals in districts that border Dangme West. Data on HIV/AIDS cases in the district are obtained from these hospitals. Although HIV/AIDS is a major health and social problem in the district, the residents still feel reluctant to talk openly about it, causing people to cover up their HIV/AIDS status for fear of stigmatization. Study Design This was an exploratory study that used qualitative data collection methods comprising interviews and focus group discussions (FGDs) to gather data on the nature and extent of HIV/AIDS-related stigma. Review of documents and observations helped to elucidate data gathered from the FGDs and interviews. The FGDs allowed an in-depth exploration of perceptions on HIV/AID-related stigma among community members while interviews provided private spaces for PLWHAs, family members, and counselors to express their views on the subject. Even though the data generated by the two data collection methods are qualitative in nature, the data from each source was unique, and as such, they helped the researchers to develop a deeper understanding of the issue being investigated. Moreover, the two data sources complemented each other, and their differing strengths made it possible for the researchers to collect and analyze data on this complex and sensitive health issue in rural Ghana. Population and Sampling Strategy The study population comprised 72 participants (60 community members, 10 PLWHAs, and 2 family members of PLWHAs) 18 years and above, who
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were residents of the rural Dangme West District. In addition, two HIV/AIDS counselors who were nurses residing in two of the districts that share boundaries with Dangme West, and were providing care and support for PLWHAs in the Dangme West District, were included. The counselors were included to seek their views on their experiences working with PLWHAs in the area. The two HIV counselors were purposively selected from two hospitals that border Dangme West—the Saint Martin’s Hospital at Agormeya and the Akuse Government Hospital; one counselor from each hospital. They were selected because they were the only counselors who were working with PLWHAs residing in the study area at the time of the study. The two counselors assisted in recruiting ten PLWHAs who were their clients and were residents in the study area. Of the ten PLWHAs who were recruited, two volunteered to assist in recruiting two family members for interview (each PLWHAs recruited a family member). Issues concerning HIV/AIDS are very sensitive in Ghana and so recruitment of participants needed to be done with caution. As a result, community members, who were also considered opinion leaders, played a vital role in selecting participants for the FGDs. With the help of three opinion leaders (one woman and two men), 60 participants consisting of 32 females and 28 males were recruited. The number of female and male participants selected was not based on any statistical computations, but rather the willingness to participate in the discussions. Although this sampling strategy has some weaknesses, it was the best way to recruit participants who were willing to discuss the issue. Apart from the HIV/AIDS counselors, all other participants for the study were selected from four communities in the Dangme West District. These communities were purposively selected because they were the administrative capitals of the four sub-districts of the Dangme West district. The urban nature of these communities made their population diverse as they attract people from the surrounding settlements, increasing the probability of selecting people with diverse perspectives on the topic. Ethical Approval and Informed Consent Ethical approval was obtained from the Institutional Review Board of the Ghana Health Service and permission was sought from the director of the district health administration of the study area. Also, permission was obtained from the administrators of the two health facilities near the study area—the Saint Martin’s Hospital at Agormeya and Akuse Government Hospital—to interview the two HIV counselors who worked in their facilities. In addition, verbal consent was obtained from all study participants before recruitment. Most of the participants had no formal education and so it would be difficult to obtain written consent. All prospective participants were informed about the purpose of the study and the expected duration of the FGDs and interviews, and researchers confirmed that participation was completely voluntary, and that they had the right to withdraw from the study.
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Data Collection and Analysis Fourteen individual interviews were conducted: ten with PLWHAs, two with family members of PLWHAs, and two with HIV/AIDS counselors. In addition, eight FGDs with 60 participants were held in four selected communities; four FGDs for the males and four for female, that is, one single-sex FGD in each community. In both the individual interviews and FGDs, information on the following issues was gathered: i) community views and attitudes toward PLWHAs; ii) family members’ attitudes toward PLWHAs; and iii) what PLWHAs thought about HIV/AIDS as well as their perceptions about being PLWHAs. The interviews and FGDs were mainly conducted in Ga-Dangme, the local language. With participants’ permission, all the interviews and FGDs were tape recorded. Additionally, detailed notes were taken to ensure that responses were fully captured. After each FGD session, the research team met to evaluate the discussions and how to improve on the next session. The original audio tapes of the individual interviews and FGDs were transcribed verbatim and then translated from the local language into English with the help of two fieldwork assistants. Following transcription, the lead investigator and co-investigators read the transcripts thoroughly and listened to portions of the audio tapes to ensure the transcription and translation of words, concepts, and expressions were accurate. The lead investigator then identified and discussed the relevant recurring themes with the study team. Based on the objectives of study, three major themes were identified: community views, attitudes, and actions toward PLWHAs; family members’ views, attitudes, and actions toward PLWHAs; and perceptions of PLWHAs about HIV/AIDS and themselves. The relevant text segments were then summarized under each theme, and then supported with relevant quotations. RESULTS Community Views, Attitude, and Actions toward PLWHAs Data from the study showed that residents in the study area had many negative views, attitudes, and actions toward PLWHAs. Many participants in the FGDs blamed PLWHAs for being responsible for their situation. They thought that PLWHAs got infected with HIV through promiscuity, multiple sexual activities, or were cursed for previous bad behavior or crime committed and, as such, they should bear the consequences alone. HIV/AIDS-related stigma was therefore high and community members would not want to have any social contact with PLWHAs, including sharing things with them. For example, community members would not eat with PLWHAs in the same bowl, even though eating from the same
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bowl is a common practice in the study area. They would also not touch any of their personal belongings for fear that they would also be infected. This is how a 28-year-old male FGD participant put it: Why do you expect people to eat together with a person sick of AIDS? I don’t think people in our communities are ready to do that. Even their own families don’t allow them to cook meals. I remember there was a rumor about one woman who used to live in this town and sell bread that she has HIV infection . . . and everybody stopped buying from her because who wants to buy food from AIDS patient. I myself would not use anything in common with anyone who has AIDS.
Some participants said that PLWHAs faced a lot of social rejection because of the erroneous perception that they might consciously or unconsciously infect others with HIV. This social rejection made it difficult for PLWHAs to go out in the communities and also participate in social or community activities. For instance, a female FGD participant, aged 29 years, recounted that “rural people avoid PLWHAs and gossip a lot about them and people could come outside just to stare at a person they heard or suspected to have HIV infection.” This view was supported by a number of the male participants who said that in such rural communities, people believe that PLWHAs should be shunned or denied access to care and support. The following statement by a 42-year-old male FGD participant also highlights the above reports: There was this woman in one of the towns in this district whose husband died of AIDS, and it was difficult for her to come to town, because people began to gossip about her, any time she comes to town people give her looks and they started to shun her company though the husband was the one who had the disease and had died.
There was general agreement among participants that PLWHAs were unable to challenge any person who mistreated them for fear that it might escalate the abuse. A 25-year-old female FGD participant remarked: If people get to know your HIV positive status in this town, you better stay quiet. If you dare to verbally abuse or confront anybody, you better run away from town because they will use your sickness to verbally abuse you.
In all the FGD sessions, male participants appeared to be holding stronger negative views and attitudes toward PLWHAs than females. For example, most of the male participants (78.3%) were of the view that people who had HIV infection should be quarantined since they could deliberately get other people infected while most of the female participants (85.2%) disagreed. For instance, a male participant aged 31 recounted that “if possible they [persons living with HIV/AIDS] should not be allowed to continue to live.” Another male participant, aged 37, stated that “if you go to sea, you would definitely land,” which figuratively suggests that a person always deserves the consequences of his or her action.
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Generally, all the FGDs participants expressed it would be difficult to eradicate the negative views and attitudes toward PLWHAs in the rural areas as some men even blamed women for being the main conduit of HIV/AIDS transmission. Family’s Views, Attitudes, and Actions toward PLWHAs Regarding attitude of family members toward their relatives living with HIV/AIDS, participants generally agreed that family members’ attitude was negative. These negative attitudes manifested in actions such as rejection, refusal to share the same bed, eat with them from same bowl, or share things such as clothes with them. According to some participants, when people became aware that a family member is HIV positive, they ceased to relate to the person as closely as they did previously. A female FGD participant, age 55 years, for instance, stated that “when one gets infected with HIV, it was the parents or a child of the infected persons who took care of them.” Other family members tended to withdraw because of fear that they would be infected if they had that close contact. The situation could particularly be worst for PLWHAs from very poor families who had difficulty raising money for the upkeep of the family. In such situations, families tended to abandon the PLWHAs since they cannot make ends meet. A male FGD participant, aged 45 years, noted: I see HIV/AIDS as a rich man disease because if a person has money and can eat well and buy the necessary drugs he may live long. Over here, it is even difficult to eat two meals in a day. So the poor AIDS patient who does not have the money to even buy meal is left to die. Their families abandon them because they don’t have the money to spend on them.
There was also a general belief among participants that family members who were infected with HIV have brought dishonor and shame onto the whole family and, as such, family members were upset and unwilling to discuss with the patient any aspect of his or her health conditions. The following is an account from a 28-year-old young woman in an interview: When family members got to know about my sister’s HIV status, none of them has talked to her or even discuss her condition. Although my father and other siblings are still nice to her, they don’t eat together with her anymore and no one in the family wants to come close to her. Family members are not happy because they feel my sister has brought shame on the family. People will think that our family is bad and that has discredited the whole family. Sometimes, I feel ashamed about the situation.
With respect to attitudes of family members toward their relatives living with HIV/AIDS, views from interview participants supported views from FGDs. For example, some participants mentioned that people who were HIV positive feared to argue over issues with their own family members because of their health condition. Some observed that the moment a person’s HIV positive status became
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known, their own family members could use their condition to verbally abuse them. A daughter of a woman living with HIV/AIDS explained: My stepmother picked a quarrel with my mother because she wanted to take from us a refrigerator that my late step father left behind. My mother did not allow her to take it and she used her health condition to insult her in public. She did that in the presence of our neighbors and I was so embarrassed.
The views expressed by participants in the individual interviews generally confirmed reports by participants in the FGDs about negative attitude of community members toward PLWHAs. However, there seemed to be disagreement over whether negative attitudes among family members was decreasing. Although FGD participants indicated that negative views and attitudes of persons living with HIV/AIDS would be hard to eradicated, some participants in the interview thought those negative views and attitudes were improving. In particular, HIV/AIDS counselors said that immediate families of PLWHAs were not ready to accept their own people in the just recent past, but now the situation has changed. They explained that during patient home visits, the immediate families showed readiness to receive the counselors and care workers, and discuss progress or conditions of the patient. They also mentioned that in many cases, an immediate family member accompanied the patient to the clinic for medical review and to receive treatment. This practice, they said, was unusual in just past. PLWHAs Views about HIV/AIDS and Themselves Data from the individual interviews provided further insights into the nature of HIV/AIDS stigma in the area. Most of the participants expressed dissatisfaction about the treatment they received from community members. According to participants, they lived in shame because HIV/AIDS is often associated with immoral sexual behavior. Shame and social rejection seemed to be very important to participants that these themes emerged often during the discussions. A female participant, aged 32 years, living with HIV/AIDS stated that “most people believe that when a person has HIV infection or is living with AIDS, it means that that person had multiple sexual partners or did not stick to one sexual partner.” A male participant, aged 31 years, indicated that when some of them were first informed of their HIV status, they were shocked and greatly disturbed. This is because “people in the community have high negative perceptions about HIV/AIDS and so they will face a complete social rejection as their health conditions deteriorate. Due to negative public perception about HIV/AIDS, some participants said that they hid their HIV/AIDS status from the public and would not even disclose it to their own spouses because of fear of being abandoned, embarrassed, and isolated. Some reported they reacted angrily, and left the scene, when someone mentioned the disease, while others were compelled to avoid their neighbors.
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A woman, aged 42 years, living with HIV/AIDS said: Nobody knows that I am HIV positive. My husband even does not know. What he knows is that I have T.B. And I can’t tell him because he will throw me away from his house. This man will definitely divorce me if he gets to know that I have this AIDS disease.
A young man, aged 27 years, living HIV/AIDS also reported that: I easily get annoyed. When I am talking to somebody and the person happens to say something in connection with HIV/AIDS, I immediately leave the person. I can’t stand such conversation. It makes me scared and annoyed.
A widow, aged 48 years, also made this statement amidst tears: Now when people see me, they ask me why I am losing weight. These questions set me thinking. I have decided to avoid these people by staying at home. But the woman who takes me to the hospital knows I have HIV and I believe she has told other people. I changed my route to the public toilet in this area because the women who stay around the area keep asking questions about my weight and I have to change my route to avoid these embarrassing questions.
The stigma and embarrassment seemed to be so strong that some PLWHAs indicated that they would prefer to die rather than live with the disease. Another widow, aged 45 years, recounted: When I was first told that I am HIV positive I was shocked. I became frightened and worried. I felt uncomfortable and hopeless, so I made up my mind that if that was really true, I will kill myself . . . maybe I will drink poison to end my life because I cannot live with this shameful disease in this community.
The debilitating health impact and the eventual (shameful) death from HIV/AIDS were also of great concern to some participants, as indicated by the following quote from male participant, aged 31 years: “I lived in fear and sometimes contemplated of committing suicide because it would be a better option than to live and experience the lethal consequence of the disease.” Another woman aged 26 living with HIV/AIDS also remarked: I can’t wait to grow lean before I die. I can’t stand the disgrace and shame that come with this disease. I prefer to die now because I have not started losing weight. If I become wasted and die everybody would know that I died of AIDS. I know that I would be isolated when I start losing weight. Even now that my condition has not deteriorated I feel isolated.
According to some of the PLWHAs, when they agreed to disclose their HIV/AIDS status, they did so to only the person they considered trustworthy
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and someone very close to them because of the side effects of medicine they took. The side effects of the HIV/AIDS drugs could be lethal, so they needed someone to help them to manage any emergency situation. As expected, none of the PLWHAs interviewed who were singles wanted to be in a relationship or get married. They strongly felt that it was better not to marry than to marry with such a health condition. They also explained that it would be difficult for PLWHAs to find a spouse since it is obvious that nobody would be willing to marry PLWHAs. DISCUSSION The findings, although not representative of the entire rural population of Ghana, touched on a number of issues that confirmed that PLWHAs in rural communities experience various degrees of stigma that need to be addressed. For instance, the findings that people viewed PLWHAs as individuals who had been cursed for an offense committed previously or had multiple sexual partners suggest that PLWHAs are responsible for their condition. This finding corroborates previous studies that put the responsibility of ill-health on the bearer [1, 16]. This is particularly so for diseases perceived to have been contracted through voluntary behaviors, especially if such behaviors elicit social disapproval and are likely to be stigmatized [17]. Since the primary transmission routes of HIV are through sexual contacts and injection drug use, HIV infection is widely perceived to be voluntary and, as such, individuals living with HIV/AIDS are considered to be responsible for their condition [18, 19]. The findings also revealed that residents of the study area have not abandoned misconceptions about HIV/AIDS. For example, many expressed fear of associating with PLWHAs. The fear was borne out of the belief that PLWHAs could deliberately or mistakenly infect others through physical contact. There are several studies that people expressed similar feelings toward PLWHAs due to their misunderstanding about the spread of HIV/AIDS [19, 20]. Although the findings indicated that PLWHAs have some trust for people close to them, such as family members, attitude of family members toward PLWHA was generally unprogressive. This finding seemed to contradict other studies on HIV/AIDS stigma in Ghana. For instance, Awusabo-Asare and colleagues [21] discovered that adolescents would care for a family member infected with HIV/AIDS, but they would stigmatize a non-family member. Similarly, respondents from the Ghana Demographic and Health Survey (GHDS) showed a more positive attitude toward a family member with the HIV/AIDS than a non-family member [14]. Findings from the GDHS, however, indicated that HIV/AIDS stigma appeared to be more prevalent among rural communities and poorer households than urban communities and richer households. These findings are consistent with findings from this current study.
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The study has demonstrated that in the rural Dangme West, men appeared to have stronger negative views toward PLWHAs than women, as most male participants thought that PLWHA should be either ostracized or quarantined. These findings supported findings from other studies [22-24]. There was also perception among some men that women were responsible for spreading HIV infection and they had to be accountable. This perception appeared to be similar to several findings in developing countries [25-27]. For example, Aggleton and Warwick [27], in assessing household and community responses to HIV and AIDS, asserted that HIV/AIDS-related stigma is gender-related, which reinforces pre-existing cultural, economic, and social disadvantaged position of women. This is especially true in rural settings, such as Dangme West, where heterosexual transmission of HIV is common, and the transmission is attributed to prostitution, which is often linked to female sexual behavior. Furthermore, the study revealed that PLWHAs in the study area were holding strong negative perceptions of HIV/AIDS. This findings confirmed prior studies in Ghana and elsewhere where self-perceived HIV/AIDS stigma has evoked anxiety, self-pity, and stress on PLWHAs, which have caused PLWHAs to express lack of interest to live [16, 20, 28]. IMPLICATIONS The study has implications for policy and provision of services for PLWHAs. In Ghana, families are the primary caregivers when one falls ill. Thus, a positive attitude of family members toward PLWHAs would be welcoming as it is a sign of source of support and care for PLWHAs, particularly in rural areas where access to HIV/AIDS support services is limited. However, findings showed that not all family members were receptive to PLWHAs. There is, therefore, the need for intensive HIV/AIDS education among family members in rural communities to reduce HIV/AIDS-related fear and stigma, so that PLWHAs can get support from their family members. Findings also underscore the need for interventions that would involve sustainable income generating activities for family members to offer adequate care for their family members living with HIV/AIDS. Moreover, studies have shown that self-perceived HIV/AIDS stigma leads to isolation, loneliness, low self-esteem, self-pity, and self-blame [29, 30]. Thus, encouraging strong family and community support for PLWHAs, including setting up disclosure units within a trusting and supportive environment in rural areas, might be one of the strategies to diffuse the HIV/AIDS stigma of PLWHAs. This study also highlights the need for a concerted effort to eliminate genderbased stereotypes and prejudices about HIV/AIDS among rural communities. It is imperative to create awareness among rural folks that both males and females are equally susceptible to HIV/AIDS infections and not just females. This may help to reduce risky sexual behavior among both men and women.
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CONCLUSION This study was undertaken in a rural district in Ghana to examine perceptions toward PLWHAs and also how PLWHAs perceived themselves with the aim of providing insights into the nature and extent of HIV/AIDS-related stigma for policy and program interventions. It demonstrated that HIV/AIDS-related stigma and fear are high among people in the rural Dangme West district. This stigma is manifested in a wide range of negative perceptions that community and family members have: HIV/AIDS is considered by the rural communities as a disease related to a perceived lifestyle choice such as prostitution and people who are affected directly have to bear the consequence of their actions. People Living with HIV/AIDS also expressed greater stigma about the diseases and of themselves. However, there is some evidence that HIV/AIDS stigma seems to be reducing and people, especially immediate family members of PLWHAs, are adopting positive attitudes toward PLWHAs. We believe that these findings offer a pathway for future research so that effective intervention can be developed to drastically reduce HIV/AIDS-related stigma in rural communities in Ghana. ACKNOWLEGDMENTS The authors wish to thank Dr. Margaret Gyapong of the Ghana Health Service for her input in the conceptualization of this research. Our special thanks go to Dr. Chimaroake O. Izugbara of the APHRC, Nairobi, Kenya for editing the first draft of this article. We also want to thank our research assistants who helped with the data collection and transcription. REFERENCES 1. G. M. Herek Thinking about AIDS and Stigma: A Psychologist’s Perspective, Journal of Law, Medicine & Ethics, 30:4, pp, 594-607, 2002. 2. J. E. Ehiri, E. C. Anyanwu, E. Donath, et al., AIDS-Related Stigma in sub-Saharan Africa: Its Contexts and Potential Intervention Strategies, AIDS & Public Policy, 20, pp. 25-39, 2005. 3. UNAIDS, Reducing HIV Stigma and Discrimination: A Critical Part of National AIDS Program, United Nations Program on HIV/AIDS, 2006 (UNAIDS) Geneva, 2007. 4. S. A. Adebajo, A. O. Bamgnala, and M. A. Oyediran, Attitudes of Health Care Providers to Persons Living with HIV/AIDS in Lagos State, African Journal of Reproductive Health, 7:1, pp. 103-112, 2003. 5. E. Monjok, A. Smesny, and J. E. Essien, HIV/AIDS-Related Stigma and Discrimination in Nigeria: Review of Research Studies and Future Directions for Prevention Strategies, African Journal of Reproductive Health, 13:3, pp. 21-35, 2009. 6. N. G. Mbonu, B. van den Borne, and N. K. De Vries, Stigma of People with HIV/AIDS in sub-Saharan Africa: A Literature Review, Journal of Tropical Medicine, ID 145891, pp. 1-14, 2009.
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7. L. C. Simbayi, S. C. Kalichman, A. Strebel, et al., Disclosure of HIV Status to Sex Partners and Sexual Risk Behaviors among HIV-Positive Men and Women, Cape Town, South Africa, Sexual Transmission Infection, 83, pp. 29-34, 2007. 8. U. Ayranci, AIDS Knowledge and Attitudes in a Turkish Population: An Epidemiological Study, BMC, Public Health, 5, p. 95, 2005. 9. C. I. Ulasi, P. O. Preko, A. Baidoo, et al., HIV/AIDS-Related Stigma in Kumasi, Ghana, Health and Place, 15, pp. 255-262, 2009. 10. C. O. Odimegwu, Prevalence and Predictors of HIV-Related Stigma and Knowledge in Nigeria: Implications for HIV/AIDS Prevention Initiatives, Takemi Research Report 210, Harvard School of Public Health, Boston. Retrieved 2003 from http:// www.hsph.harvard.edu/takemi/working_papers.htm 11. R. Parker, P. Aggleton, K. Attawell, J. Pulerwits, and L. Brown, HIV/AIDS Related Stigma and Discrimination: A Conceptual Framework and an Agenda for Action, Horizons Report, Horizons Project, Washington, 2002. 12. UNAIDS, AIDS Epidemic Updates: December 2009, UNAIDS, WHO. 13. P. M. Nardi and R. Bolton, Gay-Bushing: Violence and Aggression Gay Men and Lesbians, in Targets of Violence and Aggression, R. Baenninger (ed.), Elsevier Science Publishers, North-Holland, 1991. 14. Ghana Statistical Service (GSS), Ghana Health Service (GHS), and ICF Macro, Ghana Demographic and Health Survey 2008, GSS, GHS, and ICF Macro, Accra, Ghana, 2009. 15. Integrated Community Development (ICD), A Survey on Knowledge, Attitude, Beliefs and Practices on HIV/AIDS in the Dangme West District, ICD Limited, Dotowa, Ghana, 2000. 16. D. Skinner and S. Mfecane, Stigma, Discrimination, and Its Implications for People Living with HIV/AIDS in South Africa, Journal of Social Aspects of HIV/AIDS, 1:3, pp. 157-164, 2004. 17. B. Weiner, IDS from an Attributional Perspective, in The Social Psychology of HIV Infection, J. B. Pryor and G. D. Reeder (eds.), Lawrence Erlbaum, Hillsdale, New Jersey, pp. 287-302, 1993. 18. L. J. Bauman and K. Siegel, Misperception among Gay Men of the Risk for AIDS Associated with Their Sexual Behavior, Journal of Applied Society Psychology, 17:3, pp. 329-350, 1987. 19. S. C. Kalichman and L. C. Simbayi, Traditional Beliefs About the Cause of AIDS and AIDS-Related Stigma in South Africa, AIDS Care, 16, pp. 573-581, 2004. 20. J. Mills, Shrouded in Secrecy: Breaking the News of HIV Infection to Ghanaians Women, Journal of Transcultural Nursing, 14, pp. 6-16, 2003. 21. K. Awusabo-Asare, A. Biddlecom, K. Kumi-Kyereme, and K. Patterson, Adolescent Sexual and Reproductive Health in Ghana: Results from the 2004 National Survey of Adolescents. Occasional Report, 22, 2006. Retrieved September 9, 2008 from http://www.guttmacher,org/pubs/2006/06/08/or22.pdf 22. L. C. Simbayi, S. C. Kalichman, A. Strebel, et al., Internalized AIDS Stigma, AIDS Discrimination, and Depression among Men and Women Living with HIV/ AIDS, Cape Town, South Africa, Social Science and Medicine, 64, pp. 1823-1831, 2007. 23. L. Morrison, “It’s in the Nature of Men: Women’s Perception of Risk for HIV/AIDS in Chiang Mai, Thailand, Culture, Health & Sexuality, 8:2, pp. 145-159, 2006.
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24. G. M. Herek and E. K. Glunt, An Epidemic of Stigma: Public Reactions to AIDS, American Psychologist, 43:11, pp. 886-891, 1988. 25. D. Altman, Power and Community: Organizational and Cultural Responses to AIDS, Taylor and Francis, London, United Kingdom, 1994. 26. A. R. Lifson, W. Demissie, K. Ketema, et al., HIV/AIDS Stigma-Associated Attitudes in Rural Ethopian Community: Characteristics, Correlation with HIV Knowledge and Other Factors and Implications for Community Intervention, BMC International Health & Human Rights, 12, pp. 1-8, 2012. 27. P. Aggleton and I. Warwick, Household and Community Responses to HIV and AIDS in Developing Countries: Findings from Multi-Site Studies, UNAIDS, Geneva, 1999. 28. S. N. Sherman, J. M. Mrus, M. S. Yi, et al., How Do Patients with HIV/AIDS Understand and Respond to Health Value Questions? Journal of General Internal Medicine, 21, pp. 56-61, 2006. 29. G. M. Herek, R. J. Gillis, and J. C. Cogan, Internalized Stigma among Sexual Minority Adults: Insights from a Social Psychological Perspective, Journal of Counseling Psychology, 59:1, pp. 32-43, 2009. 30. N. Mawar, S. Sahay, A. Pandit, and U. Mahajan, The Third Phase of HIV Pandamic: Social Consequences of HIV/AIDS Stigma and Discrimination and Future Needs, Indian Journal of Medical Research, 122:12, pp. 471-484, 2005.
Direct reprint requests to: Patricia Anafi 100C Dunn Hall Dept. of Community Health The State University of New York at Potsdam Potsdam, NY 13676 e-mail: [email protected]
ABSTRACT
This qualitative study investigated community and family members’ perceptions and attitudes toward persons living with HIV/AIDS (PLWHAs) in rural Ghana and how PLWHAs viewed themselves. The purpose was to provide insights into the nature and extent of HIV/AIDS-related stigma for program and policy interventions. Interviews and focus group discussions examined the stigma. Seventy-four participants 18 years and above (60 community members, 10 PLWHAs, 2 family members of PLWHAs, and 2 HIV/AIDS counselors) participated. Results showed that PLWHAs experienced various forms of negative perceptions, were stigmatized by community and family members, and held strong negative views of HIV/AIDS, which negatively affected the way they lived. To reduce HIV/AIDS related stigma in rural areas, HIV/AIDS education programs that call for strong community and family member support for PLWHAs are essential. *This article was developed from an original research report: HIV/AIDS Related Stigma and Community Members’ Attitude and Behavior Towards Persons Living with HIV/AIDS in the Dangme West District: A Final Report of the Study Funded by the Ghanaian-Dutch Collaboration of Health Research and Development. Submitted in March 2005, Dodowa Health Research Centre, Ghana Health Service. Int’l. Quarterly of Community Health Education, Vol. 34(3) 269-282, 2013-2014 Ó 2014, Baywood Publishing Co., Inc. doi: http://dx.doi.org/10.2190/IQ.34.3.e http://baywood.com 269
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INTRODUCTION Human immunodeficiency virus infection/acquired immunodeficiency syndrome (HIV/AIDS)-related stigma refers to the prejudice directed at people perceived to be infected with HIV and at individuals, groups, and communities with whom they are associated [1]. Although stigma associated with diseases has existed for a long time, the stigma attached to HIV/AIDS has been very pronounced. In many societies AIDS is perceived as a disease of shame, and people living with this disease have experienced various forms of discrimination. They are denied basic necessities such as medical care and housing, rejected by families and forced to leave their occupation [2, 3]. HIV/AIDS-related stigma can lead to isolation, to the extent that PLWHAs no longer feel part of the community they belong to and have difficulty accessing services and support. For example, there are instances where PLWHAs were reluctant to seek healthcare because of fear of discrimination and blame [4, 5]. HIV/AIDSrelated stigma can also lead to unsafe sexual practices, loss of self-worth, and self-hatred [6, 7]. In many countries in sub-Saharan Africa, HIV/AIDS is normally perceived as a consequence of sexual immorality and, therefore, individuals infected with HIV are considered responsible for acquiring the disease. In some cases, HIV infection is perceived as a punishment that God brings upon perpetrators of immoral behaviors like prostitution, promiscuity, drug use, or homosexuality [8, 9]. The fear related to HIV/AIDS, being infected with HIV and living with the disease and its imminent death, as well as cultural and religious prescription against sexual immorality that are linked to HIV infection are the major causes of HIV/AID stigma in sub-Saharan Africa [10, 11]. In Ghana, widespread negative attitudes and behaviors toward persons living with HIV/AIDS exist in communities and among families of infected people [9, 12]. Often, communities and family members shun or gossip about those perceived to have HIV infection or AIDS. In most instances, stigma takes the form of complete abandonment [13], indicating the extent of the negative social impact of the disease on persons living with HIV/AIDS. Though HIV/AIDS stigma broadly exists in Ghana, little is known about how HIV/AIDS-related stigma manifests in rural communities, and how persons living with HIV/AIDS in rural areas perceive the AIDS disease and themselves. This study was undertaken to understand the nature and extent of HIV/AIDS-related stigma in the rural Dangme West district of Ghana and its impact on individuals living with HIV/AIDS. Specifically, the study done in 2004 sought to determine community and family members’ views, attitudes, and actions toward PLWHAs and how PLWHAs perceive themselves and the disease.
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MATERIALS AND METHODS Study Area The Dangme West District is a rural district in the Greater Accra Region of Ghana. The Greater Accra region is one of the 10 regions of Ghana and located in the southern part of the country. The Dangme West district has a population of 122,836 based on the 2010 National Population and Housing Census Data and a land size of about 1,700 square-kilometers [14]. It lies in the coastal savannah, inhabited by the Ga-Adangme ethnic group. The residents of this district have cultural beliefs that impact on their views of the etiology of diseases and ill-health and their responses to HIV/AIDS as an illness. Interpersonal relationships in the district require a lot of close contact— such as eating from the same bowl, which residents deemed as dangerous to do with PLWHAs [15]. The district shares borders with the Eastern region—the region with the highest HIV prevalence rate in Ghana. Residents with HIV/AIDS sought care in a district hospital that is located in Dodowa, the district capital, and from four other hospitals in districts that border Dangme West. Data on HIV/AIDS cases in the district are obtained from these hospitals. Although HIV/AIDS is a major health and social problem in the district, the residents still feel reluctant to talk openly about it, causing people to cover up their HIV/AIDS status for fear of stigmatization. Study Design This was an exploratory study that used qualitative data collection methods comprising interviews and focus group discussions (FGDs) to gather data on the nature and extent of HIV/AIDS-related stigma. Review of documents and observations helped to elucidate data gathered from the FGDs and interviews. The FGDs allowed an in-depth exploration of perceptions on HIV/AID-related stigma among community members while interviews provided private spaces for PLWHAs, family members, and counselors to express their views on the subject. Even though the data generated by the two data collection methods are qualitative in nature, the data from each source was unique, and as such, they helped the researchers to develop a deeper understanding of the issue being investigated. Moreover, the two data sources complemented each other, and their differing strengths made it possible for the researchers to collect and analyze data on this complex and sensitive health issue in rural Ghana. Population and Sampling Strategy The study population comprised 72 participants (60 community members, 10 PLWHAs, and 2 family members of PLWHAs) 18 years and above, who
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were residents of the rural Dangme West District. In addition, two HIV/AIDS counselors who were nurses residing in two of the districts that share boundaries with Dangme West, and were providing care and support for PLWHAs in the Dangme West District, were included. The counselors were included to seek their views on their experiences working with PLWHAs in the area. The two HIV counselors were purposively selected from two hospitals that border Dangme West—the Saint Martin’s Hospital at Agormeya and the Akuse Government Hospital; one counselor from each hospital. They were selected because they were the only counselors who were working with PLWHAs residing in the study area at the time of the study. The two counselors assisted in recruiting ten PLWHAs who were their clients and were residents in the study area. Of the ten PLWHAs who were recruited, two volunteered to assist in recruiting two family members for interview (each PLWHAs recruited a family member). Issues concerning HIV/AIDS are very sensitive in Ghana and so recruitment of participants needed to be done with caution. As a result, community members, who were also considered opinion leaders, played a vital role in selecting participants for the FGDs. With the help of three opinion leaders (one woman and two men), 60 participants consisting of 32 females and 28 males were recruited. The number of female and male participants selected was not based on any statistical computations, but rather the willingness to participate in the discussions. Although this sampling strategy has some weaknesses, it was the best way to recruit participants who were willing to discuss the issue. Apart from the HIV/AIDS counselors, all other participants for the study were selected from four communities in the Dangme West District. These communities were purposively selected because they were the administrative capitals of the four sub-districts of the Dangme West district. The urban nature of these communities made their population diverse as they attract people from the surrounding settlements, increasing the probability of selecting people with diverse perspectives on the topic. Ethical Approval and Informed Consent Ethical approval was obtained from the Institutional Review Board of the Ghana Health Service and permission was sought from the director of the district health administration of the study area. Also, permission was obtained from the administrators of the two health facilities near the study area—the Saint Martin’s Hospital at Agormeya and Akuse Government Hospital—to interview the two HIV counselors who worked in their facilities. In addition, verbal consent was obtained from all study participants before recruitment. Most of the participants had no formal education and so it would be difficult to obtain written consent. All prospective participants were informed about the purpose of the study and the expected duration of the FGDs and interviews, and researchers confirmed that participation was completely voluntary, and that they had the right to withdraw from the study.
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Data Collection and Analysis Fourteen individual interviews were conducted: ten with PLWHAs, two with family members of PLWHAs, and two with HIV/AIDS counselors. In addition, eight FGDs with 60 participants were held in four selected communities; four FGDs for the males and four for female, that is, one single-sex FGD in each community. In both the individual interviews and FGDs, information on the following issues was gathered: i) community views and attitudes toward PLWHAs; ii) family members’ attitudes toward PLWHAs; and iii) what PLWHAs thought about HIV/AIDS as well as their perceptions about being PLWHAs. The interviews and FGDs were mainly conducted in Ga-Dangme, the local language. With participants’ permission, all the interviews and FGDs were tape recorded. Additionally, detailed notes were taken to ensure that responses were fully captured. After each FGD session, the research team met to evaluate the discussions and how to improve on the next session. The original audio tapes of the individual interviews and FGDs were transcribed verbatim and then translated from the local language into English with the help of two fieldwork assistants. Following transcription, the lead investigator and co-investigators read the transcripts thoroughly and listened to portions of the audio tapes to ensure the transcription and translation of words, concepts, and expressions were accurate. The lead investigator then identified and discussed the relevant recurring themes with the study team. Based on the objectives of study, three major themes were identified: community views, attitudes, and actions toward PLWHAs; family members’ views, attitudes, and actions toward PLWHAs; and perceptions of PLWHAs about HIV/AIDS and themselves. The relevant text segments were then summarized under each theme, and then supported with relevant quotations. RESULTS Community Views, Attitude, and Actions toward PLWHAs Data from the study showed that residents in the study area had many negative views, attitudes, and actions toward PLWHAs. Many participants in the FGDs blamed PLWHAs for being responsible for their situation. They thought that PLWHAs got infected with HIV through promiscuity, multiple sexual activities, or were cursed for previous bad behavior or crime committed and, as such, they should bear the consequences alone. HIV/AIDS-related stigma was therefore high and community members would not want to have any social contact with PLWHAs, including sharing things with them. For example, community members would not eat with PLWHAs in the same bowl, even though eating from the same
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bowl is a common practice in the study area. They would also not touch any of their personal belongings for fear that they would also be infected. This is how a 28-year-old male FGD participant put it: Why do you expect people to eat together with a person sick of AIDS? I don’t think people in our communities are ready to do that. Even their own families don’t allow them to cook meals. I remember there was a rumor about one woman who used to live in this town and sell bread that she has HIV infection . . . and everybody stopped buying from her because who wants to buy food from AIDS patient. I myself would not use anything in common with anyone who has AIDS.
Some participants said that PLWHAs faced a lot of social rejection because of the erroneous perception that they might consciously or unconsciously infect others with HIV. This social rejection made it difficult for PLWHAs to go out in the communities and also participate in social or community activities. For instance, a female FGD participant, aged 29 years, recounted that “rural people avoid PLWHAs and gossip a lot about them and people could come outside just to stare at a person they heard or suspected to have HIV infection.” This view was supported by a number of the male participants who said that in such rural communities, people believe that PLWHAs should be shunned or denied access to care and support. The following statement by a 42-year-old male FGD participant also highlights the above reports: There was this woman in one of the towns in this district whose husband died of AIDS, and it was difficult for her to come to town, because people began to gossip about her, any time she comes to town people give her looks and they started to shun her company though the husband was the one who had the disease and had died.
There was general agreement among participants that PLWHAs were unable to challenge any person who mistreated them for fear that it might escalate the abuse. A 25-year-old female FGD participant remarked: If people get to know your HIV positive status in this town, you better stay quiet. If you dare to verbally abuse or confront anybody, you better run away from town because they will use your sickness to verbally abuse you.
In all the FGD sessions, male participants appeared to be holding stronger negative views and attitudes toward PLWHAs than females. For example, most of the male participants (78.3%) were of the view that people who had HIV infection should be quarantined since they could deliberately get other people infected while most of the female participants (85.2%) disagreed. For instance, a male participant aged 31 recounted that “if possible they [persons living with HIV/AIDS] should not be allowed to continue to live.” Another male participant, aged 37, stated that “if you go to sea, you would definitely land,” which figuratively suggests that a person always deserves the consequences of his or her action.
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Generally, all the FGDs participants expressed it would be difficult to eradicate the negative views and attitudes toward PLWHAs in the rural areas as some men even blamed women for being the main conduit of HIV/AIDS transmission. Family’s Views, Attitudes, and Actions toward PLWHAs Regarding attitude of family members toward their relatives living with HIV/AIDS, participants generally agreed that family members’ attitude was negative. These negative attitudes manifested in actions such as rejection, refusal to share the same bed, eat with them from same bowl, or share things such as clothes with them. According to some participants, when people became aware that a family member is HIV positive, they ceased to relate to the person as closely as they did previously. A female FGD participant, age 55 years, for instance, stated that “when one gets infected with HIV, it was the parents or a child of the infected persons who took care of them.” Other family members tended to withdraw because of fear that they would be infected if they had that close contact. The situation could particularly be worst for PLWHAs from very poor families who had difficulty raising money for the upkeep of the family. In such situations, families tended to abandon the PLWHAs since they cannot make ends meet. A male FGD participant, aged 45 years, noted: I see HIV/AIDS as a rich man disease because if a person has money and can eat well and buy the necessary drugs he may live long. Over here, it is even difficult to eat two meals in a day. So the poor AIDS patient who does not have the money to even buy meal is left to die. Their families abandon them because they don’t have the money to spend on them.
There was also a general belief among participants that family members who were infected with HIV have brought dishonor and shame onto the whole family and, as such, family members were upset and unwilling to discuss with the patient any aspect of his or her health conditions. The following is an account from a 28-year-old young woman in an interview: When family members got to know about my sister’s HIV status, none of them has talked to her or even discuss her condition. Although my father and other siblings are still nice to her, they don’t eat together with her anymore and no one in the family wants to come close to her. Family members are not happy because they feel my sister has brought shame on the family. People will think that our family is bad and that has discredited the whole family. Sometimes, I feel ashamed about the situation.
With respect to attitudes of family members toward their relatives living with HIV/AIDS, views from interview participants supported views from FGDs. For example, some participants mentioned that people who were HIV positive feared to argue over issues with their own family members because of their health condition. Some observed that the moment a person’s HIV positive status became
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known, their own family members could use their condition to verbally abuse them. A daughter of a woman living with HIV/AIDS explained: My stepmother picked a quarrel with my mother because she wanted to take from us a refrigerator that my late step father left behind. My mother did not allow her to take it and she used her health condition to insult her in public. She did that in the presence of our neighbors and I was so embarrassed.
The views expressed by participants in the individual interviews generally confirmed reports by participants in the FGDs about negative attitude of community members toward PLWHAs. However, there seemed to be disagreement over whether negative attitudes among family members was decreasing. Although FGD participants indicated that negative views and attitudes of persons living with HIV/AIDS would be hard to eradicated, some participants in the interview thought those negative views and attitudes were improving. In particular, HIV/AIDS counselors said that immediate families of PLWHAs were not ready to accept their own people in the just recent past, but now the situation has changed. They explained that during patient home visits, the immediate families showed readiness to receive the counselors and care workers, and discuss progress or conditions of the patient. They also mentioned that in many cases, an immediate family member accompanied the patient to the clinic for medical review and to receive treatment. This practice, they said, was unusual in just past. PLWHAs Views about HIV/AIDS and Themselves Data from the individual interviews provided further insights into the nature of HIV/AIDS stigma in the area. Most of the participants expressed dissatisfaction about the treatment they received from community members. According to participants, they lived in shame because HIV/AIDS is often associated with immoral sexual behavior. Shame and social rejection seemed to be very important to participants that these themes emerged often during the discussions. A female participant, aged 32 years, living with HIV/AIDS stated that “most people believe that when a person has HIV infection or is living with AIDS, it means that that person had multiple sexual partners or did not stick to one sexual partner.” A male participant, aged 31 years, indicated that when some of them were first informed of their HIV status, they were shocked and greatly disturbed. This is because “people in the community have high negative perceptions about HIV/AIDS and so they will face a complete social rejection as their health conditions deteriorate. Due to negative public perception about HIV/AIDS, some participants said that they hid their HIV/AIDS status from the public and would not even disclose it to their own spouses because of fear of being abandoned, embarrassed, and isolated. Some reported they reacted angrily, and left the scene, when someone mentioned the disease, while others were compelled to avoid their neighbors.
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A woman, aged 42 years, living with HIV/AIDS said: Nobody knows that I am HIV positive. My husband even does not know. What he knows is that I have T.B. And I can’t tell him because he will throw me away from his house. This man will definitely divorce me if he gets to know that I have this AIDS disease.
A young man, aged 27 years, living HIV/AIDS also reported that: I easily get annoyed. When I am talking to somebody and the person happens to say something in connection with HIV/AIDS, I immediately leave the person. I can’t stand such conversation. It makes me scared and annoyed.
A widow, aged 48 years, also made this statement amidst tears: Now when people see me, they ask me why I am losing weight. These questions set me thinking. I have decided to avoid these people by staying at home. But the woman who takes me to the hospital knows I have HIV and I believe she has told other people. I changed my route to the public toilet in this area because the women who stay around the area keep asking questions about my weight and I have to change my route to avoid these embarrassing questions.
The stigma and embarrassment seemed to be so strong that some PLWHAs indicated that they would prefer to die rather than live with the disease. Another widow, aged 45 years, recounted: When I was first told that I am HIV positive I was shocked. I became frightened and worried. I felt uncomfortable and hopeless, so I made up my mind that if that was really true, I will kill myself . . . maybe I will drink poison to end my life because I cannot live with this shameful disease in this community.
The debilitating health impact and the eventual (shameful) death from HIV/AIDS were also of great concern to some participants, as indicated by the following quote from male participant, aged 31 years: “I lived in fear and sometimes contemplated of committing suicide because it would be a better option than to live and experience the lethal consequence of the disease.” Another woman aged 26 living with HIV/AIDS also remarked: I can’t wait to grow lean before I die. I can’t stand the disgrace and shame that come with this disease. I prefer to die now because I have not started losing weight. If I become wasted and die everybody would know that I died of AIDS. I know that I would be isolated when I start losing weight. Even now that my condition has not deteriorated I feel isolated.
According to some of the PLWHAs, when they agreed to disclose their HIV/AIDS status, they did so to only the person they considered trustworthy
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and someone very close to them because of the side effects of medicine they took. The side effects of the HIV/AIDS drugs could be lethal, so they needed someone to help them to manage any emergency situation. As expected, none of the PLWHAs interviewed who were singles wanted to be in a relationship or get married. They strongly felt that it was better not to marry than to marry with such a health condition. They also explained that it would be difficult for PLWHAs to find a spouse since it is obvious that nobody would be willing to marry PLWHAs. DISCUSSION The findings, although not representative of the entire rural population of Ghana, touched on a number of issues that confirmed that PLWHAs in rural communities experience various degrees of stigma that need to be addressed. For instance, the findings that people viewed PLWHAs as individuals who had been cursed for an offense committed previously or had multiple sexual partners suggest that PLWHAs are responsible for their condition. This finding corroborates previous studies that put the responsibility of ill-health on the bearer [1, 16]. This is particularly so for diseases perceived to have been contracted through voluntary behaviors, especially if such behaviors elicit social disapproval and are likely to be stigmatized [17]. Since the primary transmission routes of HIV are through sexual contacts and injection drug use, HIV infection is widely perceived to be voluntary and, as such, individuals living with HIV/AIDS are considered to be responsible for their condition [18, 19]. The findings also revealed that residents of the study area have not abandoned misconceptions about HIV/AIDS. For example, many expressed fear of associating with PLWHAs. The fear was borne out of the belief that PLWHAs could deliberately or mistakenly infect others through physical contact. There are several studies that people expressed similar feelings toward PLWHAs due to their misunderstanding about the spread of HIV/AIDS [19, 20]. Although the findings indicated that PLWHAs have some trust for people close to them, such as family members, attitude of family members toward PLWHA was generally unprogressive. This finding seemed to contradict other studies on HIV/AIDS stigma in Ghana. For instance, Awusabo-Asare and colleagues [21] discovered that adolescents would care for a family member infected with HIV/AIDS, but they would stigmatize a non-family member. Similarly, respondents from the Ghana Demographic and Health Survey (GHDS) showed a more positive attitude toward a family member with the HIV/AIDS than a non-family member [14]. Findings from the GDHS, however, indicated that HIV/AIDS stigma appeared to be more prevalent among rural communities and poorer households than urban communities and richer households. These findings are consistent with findings from this current study.
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The study has demonstrated that in the rural Dangme West, men appeared to have stronger negative views toward PLWHAs than women, as most male participants thought that PLWHA should be either ostracized or quarantined. These findings supported findings from other studies [22-24]. There was also perception among some men that women were responsible for spreading HIV infection and they had to be accountable. This perception appeared to be similar to several findings in developing countries [25-27]. For example, Aggleton and Warwick [27], in assessing household and community responses to HIV and AIDS, asserted that HIV/AIDS-related stigma is gender-related, which reinforces pre-existing cultural, economic, and social disadvantaged position of women. This is especially true in rural settings, such as Dangme West, where heterosexual transmission of HIV is common, and the transmission is attributed to prostitution, which is often linked to female sexual behavior. Furthermore, the study revealed that PLWHAs in the study area were holding strong negative perceptions of HIV/AIDS. This findings confirmed prior studies in Ghana and elsewhere where self-perceived HIV/AIDS stigma has evoked anxiety, self-pity, and stress on PLWHAs, which have caused PLWHAs to express lack of interest to live [16, 20, 28]. IMPLICATIONS The study has implications for policy and provision of services for PLWHAs. In Ghana, families are the primary caregivers when one falls ill. Thus, a positive attitude of family members toward PLWHAs would be welcoming as it is a sign of source of support and care for PLWHAs, particularly in rural areas where access to HIV/AIDS support services is limited. However, findings showed that not all family members were receptive to PLWHAs. There is, therefore, the need for intensive HIV/AIDS education among family members in rural communities to reduce HIV/AIDS-related fear and stigma, so that PLWHAs can get support from their family members. Findings also underscore the need for interventions that would involve sustainable income generating activities for family members to offer adequate care for their family members living with HIV/AIDS. Moreover, studies have shown that self-perceived HIV/AIDS stigma leads to isolation, loneliness, low self-esteem, self-pity, and self-blame [29, 30]. Thus, encouraging strong family and community support for PLWHAs, including setting up disclosure units within a trusting and supportive environment in rural areas, might be one of the strategies to diffuse the HIV/AIDS stigma of PLWHAs. This study also highlights the need for a concerted effort to eliminate genderbased stereotypes and prejudices about HIV/AIDS among rural communities. It is imperative to create awareness among rural folks that both males and females are equally susceptible to HIV/AIDS infections and not just females. This may help to reduce risky sexual behavior among both men and women.
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CONCLUSION This study was undertaken in a rural district in Ghana to examine perceptions toward PLWHAs and also how PLWHAs perceived themselves with the aim of providing insights into the nature and extent of HIV/AIDS-related stigma for policy and program interventions. It demonstrated that HIV/AIDS-related stigma and fear are high among people in the rural Dangme West district. This stigma is manifested in a wide range of negative perceptions that community and family members have: HIV/AIDS is considered by the rural communities as a disease related to a perceived lifestyle choice such as prostitution and people who are affected directly have to bear the consequence of their actions. People Living with HIV/AIDS also expressed greater stigma about the diseases and of themselves. However, there is some evidence that HIV/AIDS stigma seems to be reducing and people, especially immediate family members of PLWHAs, are adopting positive attitudes toward PLWHAs. We believe that these findings offer a pathway for future research so that effective intervention can be developed to drastically reduce HIV/AIDS-related stigma in rural communities in Ghana. ACKNOWLEGDMENTS The authors wish to thank Dr. Margaret Gyapong of the Ghana Health Service for her input in the conceptualization of this research. Our special thanks go to Dr. Chimaroake O. Izugbara of the APHRC, Nairobi, Kenya for editing the first draft of this article. We also want to thank our research assistants who helped with the data collection and transcription. REFERENCES 1. G. M. Herek Thinking about AIDS and Stigma: A Psychologist’s Perspective, Journal of Law, Medicine & Ethics, 30:4, pp, 594-607, 2002. 2. J. E. Ehiri, E. C. Anyanwu, E. Donath, et al., AIDS-Related Stigma in sub-Saharan Africa: Its Contexts and Potential Intervention Strategies, AIDS & Public Policy, 20, pp. 25-39, 2005. 3. UNAIDS, Reducing HIV Stigma and Discrimination: A Critical Part of National AIDS Program, United Nations Program on HIV/AIDS, 2006 (UNAIDS) Geneva, 2007. 4. S. A. Adebajo, A. O. Bamgnala, and M. A. Oyediran, Attitudes of Health Care Providers to Persons Living with HIV/AIDS in Lagos State, African Journal of Reproductive Health, 7:1, pp. 103-112, 2003. 5. E. Monjok, A. Smesny, and J. E. Essien, HIV/AIDS-Related Stigma and Discrimination in Nigeria: Review of Research Studies and Future Directions for Prevention Strategies, African Journal of Reproductive Health, 13:3, pp. 21-35, 2009. 6. N. G. Mbonu, B. van den Borne, and N. K. De Vries, Stigma of People with HIV/AIDS in sub-Saharan Africa: A Literature Review, Journal of Tropical Medicine, ID 145891, pp. 1-14, 2009.
HIV/AIDS STIGMA IN RURAL GHANA /
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7. L. C. Simbayi, S. C. Kalichman, A. Strebel, et al., Disclosure of HIV Status to Sex Partners and Sexual Risk Behaviors among HIV-Positive Men and Women, Cape Town, South Africa, Sexual Transmission Infection, 83, pp. 29-34, 2007. 8. U. Ayranci, AIDS Knowledge and Attitudes in a Turkish Population: An Epidemiological Study, BMC, Public Health, 5, p. 95, 2005. 9. C. I. Ulasi, P. O. Preko, A. Baidoo, et al., HIV/AIDS-Related Stigma in Kumasi, Ghana, Health and Place, 15, pp. 255-262, 2009. 10. C. O. Odimegwu, Prevalence and Predictors of HIV-Related Stigma and Knowledge in Nigeria: Implications for HIV/AIDS Prevention Initiatives, Takemi Research Report 210, Harvard School of Public Health, Boston. Retrieved 2003 from http:// www.hsph.harvard.edu/takemi/working_papers.htm 11. R. Parker, P. Aggleton, K. Attawell, J. Pulerwits, and L. Brown, HIV/AIDS Related Stigma and Discrimination: A Conceptual Framework and an Agenda for Action, Horizons Report, Horizons Project, Washington, 2002. 12. UNAIDS, AIDS Epidemic Updates: December 2009, UNAIDS, WHO. 13. P. M. Nardi and R. Bolton, Gay-Bushing: Violence and Aggression Gay Men and Lesbians, in Targets of Violence and Aggression, R. Baenninger (ed.), Elsevier Science Publishers, North-Holland, 1991. 14. Ghana Statistical Service (GSS), Ghana Health Service (GHS), and ICF Macro, Ghana Demographic and Health Survey 2008, GSS, GHS, and ICF Macro, Accra, Ghana, 2009. 15. Integrated Community Development (ICD), A Survey on Knowledge, Attitude, Beliefs and Practices on HIV/AIDS in the Dangme West District, ICD Limited, Dotowa, Ghana, 2000. 16. D. Skinner and S. Mfecane, Stigma, Discrimination, and Its Implications for People Living with HIV/AIDS in South Africa, Journal of Social Aspects of HIV/AIDS, 1:3, pp. 157-164, 2004. 17. B. Weiner, IDS from an Attributional Perspective, in The Social Psychology of HIV Infection, J. B. Pryor and G. D. Reeder (eds.), Lawrence Erlbaum, Hillsdale, New Jersey, pp. 287-302, 1993. 18. L. J. Bauman and K. Siegel, Misperception among Gay Men of the Risk for AIDS Associated with Their Sexual Behavior, Journal of Applied Society Psychology, 17:3, pp. 329-350, 1987. 19. S. C. Kalichman and L. C. Simbayi, Traditional Beliefs About the Cause of AIDS and AIDS-Related Stigma in South Africa, AIDS Care, 16, pp. 573-581, 2004. 20. J. Mills, Shrouded in Secrecy: Breaking the News of HIV Infection to Ghanaians Women, Journal of Transcultural Nursing, 14, pp. 6-16, 2003. 21. K. Awusabo-Asare, A. Biddlecom, K. Kumi-Kyereme, and K. Patterson, Adolescent Sexual and Reproductive Health in Ghana: Results from the 2004 National Survey of Adolescents. Occasional Report, 22, 2006. Retrieved September 9, 2008 from http://www.guttmacher,org/pubs/2006/06/08/or22.pdf 22. L. C. Simbayi, S. C. Kalichman, A. Strebel, et al., Internalized AIDS Stigma, AIDS Discrimination, and Depression among Men and Women Living with HIV/ AIDS, Cape Town, South Africa, Social Science and Medicine, 64, pp. 1823-1831, 2007. 23. L. Morrison, “It’s in the Nature of Men: Women’s Perception of Risk for HIV/AIDS in Chiang Mai, Thailand, Culture, Health & Sexuality, 8:2, pp. 145-159, 2006.
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24. G. M. Herek and E. K. Glunt, An Epidemic of Stigma: Public Reactions to AIDS, American Psychologist, 43:11, pp. 886-891, 1988. 25. D. Altman, Power and Community: Organizational and Cultural Responses to AIDS, Taylor and Francis, London, United Kingdom, 1994. 26. A. R. Lifson, W. Demissie, K. Ketema, et al., HIV/AIDS Stigma-Associated Attitudes in Rural Ethopian Community: Characteristics, Correlation with HIV Knowledge and Other Factors and Implications for Community Intervention, BMC International Health & Human Rights, 12, pp. 1-8, 2012. 27. P. Aggleton and I. Warwick, Household and Community Responses to HIV and AIDS in Developing Countries: Findings from Multi-Site Studies, UNAIDS, Geneva, 1999. 28. S. N. Sherman, J. M. Mrus, M. S. Yi, et al., How Do Patients with HIV/AIDS Understand and Respond to Health Value Questions? Journal of General Internal Medicine, 21, pp. 56-61, 2006. 29. G. M. Herek, R. J. Gillis, and J. C. Cogan, Internalized Stigma among Sexual Minority Adults: Insights from a Social Psychological Perspective, Journal of Counseling Psychology, 59:1, pp. 32-43, 2009. 30. N. Mawar, S. Sahay, A. Pandit, and U. Mahajan, The Third Phase of HIV Pandamic: Social Consequences of HIV/AIDS Stigma and Discrimination and Future Needs, Indian Journal of Medical Research, 122:12, pp. 471-484, 2005.
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