Experiences of Discrimination Among Youth with HIV/AIDS in Ibadan, Nigeria.

Nigerian youth currently bear a disproportionate burden of the HIV epidemic. This paper presents findings on the occurrence of HIV-related discrimination among youth with HIV accessing care in Ibadan, Nigeria. A cross-sectional study was conducted and information on history of discrimination experienced by 170 youth with HIV was obtained. About 80% of respondents had disclosed their HIV status. The majority had informed their spouses (66.3%), mothers (47.1%), fathers (39.1%) and siblings (37.7%). Sixteen (11.5%) respondents [15 (93.8%) females and one (6.2%) male] had suffered discrimination since disclosure of their status. Of these, 25.0% respondents were sent out of their matrimonial homes by their husbands, 25.0% were abandoned by their spouses and 12.5% indicated their fiancé broke up their relationship. A higher proportion of females (12.9%) than males (4.3%) had suffered discrimination. In addition, a significant proportion of respondents who were separated/divorced (73.3%) had been victims of discrimination compared with those who were widowed (10.5%) or single (5.9%) (P<0.05). The study confirmed that young people living with HIV/AIDS, especially women experience extreme forms of discrimination. More efforts aimed at addressing HIV/AIDS-related discrimination are required especially as it is a known barrier to HIV prevention and treatment efforts.

Introduction

The prevalence of HIV/AIDS has remained high in sub-Saharan Africa. In Nigeria, the national HIV sentinel survey conducted in 2008 showed that the national HIV prevalence for women attending antenatal clinics was 4.6% and those in the 25-29 year age group recorded the highest prevalence.[1]

Stigma and discrimination are major consequences of HIV/AIDS inspite of the fact that effective drugs, which improve the health of People Living with HIV/AIDS (PLWHA), now exist. In 2002, the Joint United Nations Programme on HIV/AIDS (UNAIDS) published a report declaring that the stigma associated with HIV was one of the greatest barriers to preventing new infections and alleviating the impact of the disease.[2] Generally, stigma refers to the branding or labeling of a person or group of persons as being unworthy of inclusion in human community, resulting in discrimination and ostracization.[3] This branding is usually related to some perceived physical, psychological or moral condition believed to render the individual or group unworthy of full inclusion in the community. HIV-related stigma consists of negative attitudes directed at those infected or suspected of being infected with HIV as well as those affected by AIDS by association (such as orphans or the children or families of PLWHA). Discrimination as defined by the UNAIDS protocol for identification of discrimination against PLWHA refers to any form of arbitrary distinction, exclusion or restriction affecting people because of their confirmed or suspected HIV-positive status.

HIV/AIDS stigma has dire consequences for PLWHA and those taking care of them.[4-6] Generally, PLWHA are wary about disclosing their status because of the fear of stigma and discrimination associated with the disease. Many individuals and affected families thus refuse to share the diagnosis with others because of a sense of guilt and shame associated with the disease and also the fear of community disapproval of the sickness. This is because disapproval often leads to stigmatization, isolation and termination of association with the infected individual and his family.[7] HIV-related stigma and discrimination also affects whether people go for voluntary counseling and testing VCT,[8-11] as well as their willingness to share their fears with family, friends or colleagues. Stigma also has affects adherence to Anti-Retroviral Therapy by PLWHA thus affecting their quality of life and increasing complications.[4,8,12-15] It also leads to public denial of HIV/AIDS and this neither helps to reduce the HIV/AIDS infection nor help in fighting stigma.[4,16,17] Stigma and discrimination are issues which PLWHA and those caring for them have to deal with on a daily basis and working in synergy, they place a burden on human development by denying many people of the chance of reaching their full potential.[3]

A study carried out in France reported that more than one third of a sample of 889 PLWHA had experienced HIV-related discrimination in different aspects of their social life in the five year preceding the survey.[18] A study carried out among physicians, nurses and midwives in four Nigerian states and documented by UNAIDS reported that 10% of respondents admitted to having refused care to a patient with HIV or AIDS.[19] In India, 70% of the people with HIV studied said they had faced discrimination, most commonly in families or within health-care settings.[20] PLWHA are sometimes victims of extreme forms of discrimination, for example Septimus reported that some people with HIV were thrown out of their family homes, some lost their jobs and a woman with HIV was mobbed in Ghana.[21]

Nigerian youth (aged 18-35 years) comprise a broad and dynamic group. They represent the most active, volatile, and vulnerable segment of the nation’s population.[22] Currently, they are the worst hit by the HIV epidemic.[1] This places an additional burden on their development especially in the face of the existing socio-economic milieu of the country. This paper reports experiences of discrimination among youth with HIV following disclosure of their HIV status. Findings are part of a larger study on the social and economic problems of PLWHA in Ibadan.

Materials and Methods

A cross-sectional study was conducted in Ibadan, the capital of Oyo state. Oyo state is one of the 36 states in Nigeria. It was created in 1976 out of the old Western region and has an estimated population of over 5 million.[23] Ibadan has an estimated population of over 1 million. Respondents were recruited from two HIV/AIDS support groups as well as from the Anti-Retroviral treatment Clinic via the General Out-patients clinic, University College Hospital, Ibadan, Oyo State, Nigeria. The definition of youth used here conforms to that given by the National Youth Policy and strategic Plan of Action of the Federal Republic of Nigeria which states that, youth comprise of all males and females aged 18 to 35, who are citizens of the Federal Republic of Nigeria.[22]

A list of the registered non-governmental organizations (NGOs) providing care and support for PLWHAs in Ibadan was obtained and two of the three NGOs which were registered at the time of the survey were selected using simple random sampling technique. All consenting individuals in each site were subsequently interviewed. A total sample of PLWHA referred to the antivirals (ARVs) clinic, University College Hospital (UCH), from the general outpatient department, during the study period was carried out.

Ethical approval for the study was obtained from the U.I/UCH Ethical Review Board and informed consent was obtained from respondents. The questionnaire was translated into Yoruba, the local language and back translated to English to ensure the original meaning was retained. The questionnaire was pre-tested on a group of PLWHA obtaining care in the Federal Medical Centre, Abeokuta. The data obtained was analysed using the Statistical Package for Social Sciences (SPSS Inc., Chicago, IL, USA - version 15).

Results

Socio-demographic characteristics

There were 170 young people aged 18-35 years, 140 (82.4%) were female and 30 (17.6%) male, 77 (44.7%) were in the 25-30 year age group. The majority of respondents (97.8%) were diagnosed HIV positive in the 5-year period preceding the study. Sixty-seven (39.4%) were currently married, 55 (82.1%) of who were in monogamous marriages; 115 (67.6%) were Christians and the highest level of education for 89 (52.4%) of the respondents was secondary education. One hundred and eight (63.5%) respondents were currently employed, 57 (52.8%) of who were traders (Table 1).

Table 1.

Socio-demographic characteristics of respondents.

Socio-demographic characteristics	N.	%
Age group (years)
<24	17	10.0
25-30	77	45.3
31-35	76	44.7
Sex
Male	30	17.6
Female	140	82.4
Highest level of education
No formal education	5	2.9
Primary	27	15.9
Secondary	89	52.4
Tertiary	49	28.8
Religion
Christianity	115	67.6
Islam	55	32.4
Marital status
Single	67	39.4
Married	67	39.4
Widowed	20	11.8
Separated/divorced	16	9.4
Family type (n=67)
Monogamous	55	82.1
Polygamous	12	17.9
Currently employed
Yes	108	63.5
No	62	36.5
Occupation (n=108)
Trading	57	52.8
Artisans	19	17.6
Civil servant	10	9.2
Business people	5	4.6
Driving	4	3.7
Professionals	4	3.7
Teaching	2	1.9
Others	7	6.5

Experiences of discrimination

One hundred and thirty-eight (81.1%) o f respondents had disclosed their HIV status. Fifty-five (66.3%) of the 83 respondents who were currently married and separated/divorced had informed their spouses of their status. Two currently widowed respondents had also disclosed their status to their spouses before their demise. Other people respondents had disclosed their status to included mothers (47.1%), fathers (39.1%) and siblings (37.7%), (Table 2). Among those who had disclosed their status, 16 (11.5%) [15 (93.8%) females and one (6.2%) male] had suffered discrimination. Discriminatory acts took various forms: four (25.0%) respondents were sent out of their matrimonial home by their husbands and four (25.0%) were abandoned by their spouses. Two (12.5%) indicated their fiancé broke up their relationship with them when they learnt that they were positive, two (12.5%) of the respondents reported that their husbands became hostile towards them and one (6.2%) each had experienced hostile behaviour from their mother, another relation and a health worker. The only male respondent who had experienced discrimination reported that his mother was the perpetrator and that although she was initially hostile towards him, she had since become caring and supportive (Table 3).

Table 2.

Respondents and disclosures list.

	N.	%
Disclosures
Yes	138	81.2
No	32	18.8
To whom* n=138
Spouse (n = 83)°	55	66.3
Mother	65	47.1
Father	54	39.1
Sibling	52	37.7
Friend	16	11.6
Other relative	12	8.7
In-law	5	3.6
Partner	3	2.2
Others[#]	7	5.1

*Multiple response

°comprised all those who were currently married and separated/divorced

#others included children=2, religious leader = 2, colleagues = 2 and fiancé = 1.

Table 3.

Proportion of respondents who have experienced discrimination and sources of discrimination.

	N.	%
History of discrimination
Yes	16	11.5
No	123	88.5
Sources of discriminatory behaviour (n = 16)
Spouse	11	68.9
Fiancé	2	12.5
Parent	1	6.2
Other relatives	1	6.2
Health worker	1	6.2
Types of discriminatory behaviour (n=16)
Sent out of matrimonial home	4	25.0
Abandoned by spouse	4	25.0
Fiancé broke relationship	2	12.5
Hostile spouse	2	12.5
Hostile mother/relative/health worker	3	18.8
Spouse divorced respondent	1	6.2

Factors associated with experience of discrimination

More females (12.9%) than males (4.3%) had been discriminated against and discrimination was highest among those with primary education. A significant proportion of respondents who were separated/divorced (73.3%) had been victims of discrimination compared with those who were widowed (10.5%) or single (5.9%). None of the currently married youth had experienced discrimination. More of those who were unemployed (14.5%) versus those employed (9.5%) had been discriminated against and 16.7% of those who did not know their spouse’ HIV status had been discriminated against compared with those who knew their spouse’ HIV status (Table 4).

Table 4.

Factors associated with experience of discrimination.

Socio-demographic characteristics	Discrimination		Fisher’s exact
	Yes (%)	No(%)	P
Sex (n=139)
Male	1 (4.3)	22 (95.7)	0.472
Female	15 (12.9)	101 (87.1)
Age group
24 and below	1 (7.1)	13 (92.9)	0.928
25-30	7 (10.8)	58 (89.2)
31-35	8 (13.3)	52 (86.7)
Level of education (n=139)
No formal education	0	5 (100.0)	0.352
Primary	4 (17.4)	19 (82.6)
Secondary	10 (14.1)	61 (85.9)
Tertiary	2 (5.0)	38 (95.0)
Marital status (n=279)
Single	3 (5.9)	48 (94.1)	<0.001
Married	0	54 (100.0)
Separated/divorced	11 (73.3)	4 (26.7)
Widowed	2 (10.5)	17 (89.5)
Currently employed
Yes	8 (9.5)	76 (90.5)	0.420
No	8 (14.5)	47 (85.5)
HIV status of spouse/regular sexual partner (n=120)
Positive	2 (6.1)	31 (93.9)	0.241
Negative	1 (4.8)	20 (95.2)
Not known	11 (16.7)	55 (83.3)

Discussion

Over 80% of the respondents had disclosed their status; mostly to their spouse/partner, their parents, siblings and friends. Findings from a pilot study carried out in Kenya showed that about 89.5% of PLWHA had disclosed their status. Participants in the Kenyan study also reported a preference for disclosing to a spouse, as did the respondents in Ibadan.[24] About ninety-three per cent of PLWHA studied in India had disclosed their HIV status and majority revealed it to their spouse (76.9%) followed by parents (10.2%) and friends (5.1%). Other confidants were their siblings, co-workers, neighbours or any close relative.[20] The lower figure obtained in our study could be attributed to the fact that HIV-related stigma is still a problem in Nigeria. In addition, at the time of the study, ARVs were not yet universally available to PLWHA in the study area as prerequisite investigations still had to be paid for by patients. About a tenth of respondents who had disclosed their status had been victims of discriminatory behaviour.

This is lower than the figure obtained in a study carried out in France, which reported that more than one third of the study participants had experienced HIV-related discrimination in different aspects of their social life.[18] Among the PLWHA studied in India, as many as 70 per cent of the respondents had reportedly faced discrimination which mainly occurred at the family level (33.3%), in hospitals (32.5%) and from neighbours (18.3%), within the community (9.17%), educational institutes, relatives and workplace.[20] This difference might have been due to the fact that a lower proportion of respondents in Ibadan had disclosed their status and those who disclosed informed close family members; the majority of who had been quite supportive. Our study showed that females were about three times as likely to have experienced discrimination since they were diagnosed HIV positive compared with the males. In addition, discrimination reportedly occurred mainly from their spouses. Studies have documented that in addition to being at greater risk of contracting HIV than men, women are also more likely to suffer from stigma and discrimination. They are often treated more negatively by family and household members than men.[24,25] Similar extreme acts of discrimination have been documented by other studies.[8,21] The women in our study experienced a variety of negative reactions following disclosure of their status. These ranged from hostile behaviour from their spouses to abandonment. Other studies among PLWHA have also reported that women who share HIV test results with their partners experienced negative reactions such as accusations, discrimination, physical violence and abandonment.[6,8,21,26-31] Our study revealed that discrimination occurred more among those who were separated/divorced and this is not surprising since their current marital state of being separated/divorced was an aftermath of discriminatory behaviour.

Conclusions

The study confirmed that young PLWHA especially the females had experienced extreme forms of discrimination. More efforts by government aimed at addressing HIV/AIDS-related stigma and discrimination are thus required. The general populace including relatives of PLWHA also needs to be educated on the negative effect stigma and discrimination has on PLWHA. This would ultimately lead to improvements in the quality of life of those infected and affected by the virus.