Objectives: This study assessed the various domains of stigma experienced by PLWHAs attending an HIV clinic at General Hospital, Lagos Island, their medication adherence patterns and their coping mechanisms for ensuring adherence to antiretroviral therapy.

Method: A cross-sectional study design with a sample size of 200 was used. Respondents were selected using systematic random sampling. Interviewers administered structured questionnaires were used to collect information on the domains of stigma. Data was analysed using EPI info^©. This was followed by a focus group discussion (FGD) with seven participants at the clinic using an interview guide with open-ended questions.

Results: Overall, stigma was experienced by 35% of the respondents. Within this group, 6.6%, 37.1%, 43.1% and 98.0% of the respondents reported experiencing negative self image stigma, personalised stigma, disclosure stigma and public attitude stigma respectively. Almost 90% of the respondents were adherent. The FGD revealed that disclosure was usually confined to family members and the coping mechanism for achieving adherence was to put antiretroviral (ARVs) in unlabelled pill boxes.

Conclusion: This study found that stigma was low and that the most common domain of stigma experienced was public attitude stigma. Medication adherence of respondents was good as a result of the coping mechanism, which involves putting ARVs in unlabelled pill boxes.

Contexte: Les personnes vivant avec le VIH et SIDA (PVVS) connaissent des formes de stigmatisation qui peuvent entraîner une mauvaise observance de leur traitement.

Objectifs: Cette étude évalue les différents types de stigmatisation vécus par les personnes vivant avec le VIH/SIDA traitées au centre de traitement du VIH de l’hôpital général de l’île de Lagos, leurs niveaux d’observance du traitement et leurs mécanismes d’adaptation pour assurer l’observance de la thérapie antirétrovirale.

Méthode: Une étude transversale a été réalisée sur un échantillon de 200 personnes. Les participants ont été sélectionnés de manière aléatoire et systématique. Les enquêteurs ont utilisé des questionnaires structurés afin de recueillir des informations sur la stigmatisation. Les données ont été analysée par EPI info^©. Des groupes de discussion thématique ont été ensuite mis en place avec sept participants au centre de traitement, en utilisant un guide d’entretien avec des questions ouvertes.

Résultats: Au total, 35% des personnes interrogées se sont dites victimes de stigmatisations. Au sein de ce groupe, 6.6%, 37.1%, 43.1% et 98.0% des personnes interrogées ont indiqué ressentir respectivement une stigmatisation associée à une mauvaise image de leur propre personne, une stigmatisation de la personne, une stigmatisation associée à la divulgation de leur statut et associée à l’attitude du public. Près de 90% des personnes interrogées observaient leur traitement. Le groupe de discussion a révélé que la divulgation de la maladie se limitait essentiellement à la famille et que le meilleur mécanisme d’adaptation pour observer leur traitement était de placer les cachets de traitement antirétroviral (ARV) dans des piluliers non étiquetés.

Conclusion: Cette étude a révélé que la stigmatisation était faible et que la plus importante était celle ressenti par rapport à l’opinion publique. Les personnes interrogées suivent leur traitement grâce au mécanisme d’adaptation qui consiste à placer les comprimés d’ARV dans des piluliers non étiquetés.

Medication adherence plays a very important role in the survival and quality of life of PLWHA, thus it is imperative to study the effect of stigma on medication adherence amongst PLWHA in the Nigerian context. The impact of stigma on medication adherence by PLWHA who are on HAART cannot be overemphasised. In a study with 25 adolescents and young adults, half of the participants had missed medication doses for fear of disclosing their status and possible subsequent stigma.¹¹

This work provides deeper insight into HIV infection-associated stigma experienced by people living with the virus, thereby helping to explore ways of addressing the problem and identifying a coping mechanism practiced that appears to promote ARV medication adherence.

An interview guide in English with open-ended questions was used to conduct the FGD, which took place in a conducive environment at the clinic on a non-clinic day after questionnaire administration had been completed. The participants for the FGD were purposively selected amongst the PLWHAs accessing services at the treatment site. Verbal informed consent was sought from the seven participants prior to the event, and the purpose of the FGD and the type of information needed was also explained. In the welcome address, participants were encouraged to communicate and interact with each other and told that the session would be tape-recorded. Any question not understood by the participants was interpreted by the research assistants in the local dialect. A ‘note taker’ also took notes. At the end of the one-hour session, the principal investigator thanked the participants and they were given refreshments. Information collected was analysed manually.

Respondents were asked whether they agreed or disagreed with 16 items, and answer choices were offered on a four-point Likert scale (Strongly Disagree [0], Disagree [1], Agree [2], Strongly Agree [3]).¹³ The 16 items, which was developed by Berger and colleagues,¹² assessed the four domains of stigma (each domain has 4 items), with a maximum score of 12 and a minimum of 0 for each domain of stigma. Percentage scores greater or equal to 50% (6 and above out of 12 scores) were considered to indicate that stigma was experienced, whilst those who had a percentage score of less than 50% (5 and below out of 12) were perceived not to have experienced stigma.¹⁴

Overall stigma was assessed based on the total of 16 items, which gave a maximum score of 54 and a minimum score of 0. Percentage scores greater than or equal to 50% (27 and above, out of 54) were considered to indicate that stigma was experienced, whilst those who had a percentage score of less than 50% were perceived not to have experienced stigma (scores of 26 and below, out of 54).¹³

Respondents were also asked some questions assessing their medication adherence. Seven days recall of medication usage by patients was used to measure medication adherence. Patients were asked if they had adhered to their medication within the last 7 days, and the total number of days they adhered was divided by 7 days and converted to a percentage.^15,16,17 A score of 95% and above represented good adherence and less than 95% was rated as poor adherence.¹⁸ Socio-demographic characteristics and medication adherence attributes of PLWHA were assessed based on the various domains of stigma they experienced. A Chi-square statistical test was used to test the level of significance at a p-value of 0.05 whilst the FGD was analysed manually.

Most respondents were between 25 and 44 years of age (69.0%), and the mean age was 35.75 years ± 10.74. Female respondents were 64.5%, and 86.3% of respondents had at least secondary school education, of which 45.2% had tertiary education. Most of the respondents (42.6%) were married and there were more Christians (56.9%) and members of the Yoruba ethnic group (Table 1).

There was no statistically significant association between the reasons why respondents missed medication and the frequency of missed ARV medication. Of the respondents who missed their medication when they travelled, most (66.6%) did so at least once in two months. Half of the respondents who skipped their drugs when they felt better, or because of someone’s presence, did so at least once in two months. All respondents who had skipped doses in the past due to side effects did so at least once in two months. Also, 37.5% of those who got tired of taking the medication did so at least once in two months. Based on seven days recall, most respondents (89.4%) were adherent to their ARV medication, whilst 10.6% were not (Table 3).

There was a statistically significant association between respondents’ educational level, ethnic group and personalised stigma (p = 0.018 and 0.043 respectively). Respondents with the highest level of education (tertiary education) experienced the least personalised stigma (29.2%) and as the education level decreased from secondary to primary and finally to no formal education, personalised stigma increased from 40.7% to 43.5% and finally to 100%. Hausa respondents experienced the highest personalised stigma (54.5%), this was followed by Igbos (41.3%) and then 35.8% amongst Yorubas (Table 4).

‘Lack of understanding by the people within the society. The PLWHAs here understand everything about the virus but the people in the community do not have the understanding and this is what leads to stigma.’ (Participant 4, Female)

‘Members of the community will ask me embarrassing and derogatory questions if I reveal my status to them.’ (Participant 3, Female)

Generally speaking, most of the participants had disclosed only to family members, thus they had not really experienced discrimination from members of the community. One lost her boyfriend after disclosing but they all supported the notion of disclosing.

‘It is the people who can keep secret that should be told.’ (Participant 3, Female)

‘Disclosure should start with your family (‘charity begins at home’) before you disclose to outsiders.’ (Participant 2, Female).

‘It is not okay to disclose to everybody because they will run away.’ (Participant 1, Female)

The participants knew about ARVs; five of them were currently using them and they could mention some of their names; they also know that ARVs benefit the immune system and keep them healthy.

‘I was on stavudine, lamivudine and nevirapine but the stavudine was changed to zidovudine (because stauvudine was phased out). The benefits are that it makes me stronger and healthier. The second benefit is that it prevents me from breaking down, the third reason is that it increased my CD4 (from 732 to 914 recently).’ (Participant 6, Male)

The challenge experienced with taking the ARVs in the past were mainly due to side effects and timing. Two of the participants were on stavudine before it was phased out and experienced body fat redistribution; other side effects experienced by PLWHAs were rashes and black spots and changes in their menstrual cycles. Concerning side effects, some participants had their drugs changed by their doctors whilst others were reassured. They were able to cope with the side effects without missing doses because they understood the reason why adherence was important. At the time of the FGD none of the participants had issues concerning side effects.

‘The adherence challenge is taking the drug at the right time. The reason is because am usually in the bus at that period and without water. The presence of someone does not deter me from taking my drug, friends call me ‘drug addict’ because they see me taking drugs often but they do not know the drug I am taking. I just tell them that I am taking my fuel.’ (Participant 6, Male)

‘I have challenges when taking the drugs in the evening because I am usually out in the church during that period and there is no water.’ (Participant 2, Female)

On the need for adherence, the participants were of the opinion that adherence is important

‘To prevent the virus from ‘exploding’. (Participant 2, Female)

‘To prevent viral replication and increase CD4.’ (Participant 6, Male)

‘Adherence prevents resistance and the need for going from 1st line to 2nd or 3rd line regimen.’ (Participant 6, Male)

The coping mechanism for taking the drugs in the presence of people was to remove the drugs from their container and put them in an unlabelled pill box, which has allowed them the freedom of taking their drugs anywhere, anytime.

‘I set my phone alarm, and I remove the drug from its container and put it in a pill box from where I take the drug even in the presence of people.’ (Participant 2, Female)

‘I transfer the drug into a pill box and take them in the presence of people, taking the drug has prevented me from drinking beer.’ (Participant 6, Male)

The majority (92.9%) of the respondents had known their HIV status for more than six months and 83.2% had been attending the HIV clinic for minimum of six months. The majority of the respondents (71.6%) were on ARVs, and amongst this group 25.5% sometimes missed their medication. This is in line with a study carried out at a tertiary health facility in Edo State in 2008, which reported that 26.5% of PLWHAs sometimes miss their medication.^18,19

The main reason for respondents not taking their drugs was that they were tired of taking the medication (52.2%), followed by the presence of someone else (17.3%), travelling without taking along ARV medication (13.1%), feeling better and skipping doses (13.1%) and because of side effects (4.3%). This finding was corroborated by a study on AIDS patients from selected developed and developing countries (USA, Canada, Belgium, Brazil and Botswana) in 2006, which showed that being tired of taking ARV medication was the major reason why PLWHAs skip their doses on the average for all the countries (52.9%).²⁰ However, a study in Rwanda in 2008 found that the main reason for respondents skipping their ARVs was because they travelled without taking along their medication (30.0%).²¹ This is in contrast with the result of the study done in Botswana in 2003, which established an association between side effects of ARVs and poor medication adherence.²² A similar study done in Kenya in 2009 showed that the main reason for missing doses was forgetting to take along their drugs when travelling (71.8%),²³ and a study done in Baltimore, USA, in 2007, which involved urban youths (adolescents and young adults) of whom 56.9% were males, which revealed that half of the participants (50%) had missed medication doses for fear of disclosing their status.¹¹

Most of the respondents who missed their medication for whatever reason because they travelled without their medication did so once in two months this is in contrast to the result of a study carried out in southwest Ethiopia in 2010 where only 19.8% of respondents travelled without their medication at least once in two months.²⁴

Most of the respondents on ARVs (89.4%) were adherent to their medication, based on 7 days recall. The motivation for this high level of adherence, according to the respondents during the FGD, include availability of ARVs with minimal side effects, educating PLWHAs on the benefits and usefulness of ARVs in controlling the virus, and the fact that they remove the ARVs from the labelled containers and put them in unlabelled pill boxes, which gives them the freedom to take their drugs in the presence of other people. This level of adherence is higher than reported in the result of a study amongst PLWHAs in Benin city in 2008, which reported a medication adherence of 58.1%.¹⁸ One reason for the difference could be that 86.3% of respondents in this study had at least secondary school education, compared to 10.6% in the Benin study. However, a similar study carried out in Southwest Ethiopia in 2010 found that 95% of respondents on ARVs were adherent to their medication;²⁴ the same was observed in a 2005 study carried out in Mombasa, Kenya.²⁵ A 2006 study done in Chicago on medication adherence amongst PLWHAs who are of African-American origin reported that 70.6% of the respondents were adherent,²⁶ and another medication adherence study done in Boston, USA, in 2006 gave a medication adherence of 90.0%.²⁷

Amongst the various domains of stigma, public attitude stigma was very high (98%), whilst that of negative self image was the lowest, at 6.6%. This portrays stigma as being experienced externally and not internally, which is unlike what was observed in a study done in Los Angeles where public attitude stigma was experienced amongst 31% of the respondents, whilst negative self image stigma was experienced amongst 89% of respondents.²⁸ This is also different from the result of a study carried out in 2005 in South India, where public attitude stigma was experienced amongst 72.2% of respondents whilst negative attitude stigma was experienced amongst 85.9% of respondents.²⁹ However a study carried out in Kenya in 2008 found that 85% of the HIV+ respondents had experienced public attitude stigma,³⁰ which is similar to the result obtained in this study. Furthermore, 37.1% of the respondents in this study had experienced personalised stigma, compared to 77.8% of respondents in a study carried out in Ogun State in 2008.³¹ The reason for the difference could be that the respondents in the Ogun state study were younger (18–35 years). Amongst the respondents in this study, 43.1% experienced disclosure stigma; this result corroborates that of a study done in sub-Saharan Africa in 2001 which revealed that 46.4% of respondents experienced disclosure stigma.³²

Only 35% of the respondents were stigmatised; this low level is probably because, according to the FGD, the respondents practice limited disclosure (amongst close family members or loved ones or trusted friends). This result is consistent with a study done in the USA in 2009 which reports that one third (33.0%) of its study unit experienced stigma,²⁹ but it is quite different from a study carried out in Ethiopia in 2008 where stigma prevalence was 86.4%.¹³

Increase in level of education was associated with a reduction in personalised stigma. Respondents who had tertiary education experienced less personalised stigma compared to those who had only primary education of (χ² = 10.020, p = 0.018). This is in conformity with a 2003 study done in Tanzania which found that respondents with a higher level of education were less likely to experience personalised stigma.³³ This could be due to the better living and working conditions and social support available to people with higher educational status.¹³ Amongst the ethnic groups, the Hausas experienced personalised stigma more than the other ethnic groups (χ² = 9.969, p = 0.043).

Respondents who had been attending the HIV clinic for over 2 years experienced more personalised stigma than the others (χ² = 16.052, p = 0.000). This suggests that stigma experienced by people living with HIV increases with time. In terms of ARV use, respondents who were on ARVs experienced more personalised stigma compared to PLWHAs who were not on ARVs (χ² = 8.192, p = 0.004); this finding is in conformity with the result of a study carried out in Lesotho in 2009 which revealed an association between ARV use and personalised stigma.³⁴ It is also similar to the result of a study carried out in Ethiopia in 2008 where it was found that PLWHAs on ART experienced personalised stigma more than those who were treatment naïve.¹³ Side effects of medication could be responsible for this; a study carried out in 2002 in three African countries, namely Ghana, Kenya and Rwanda, found that long term use of some ARVs can result in disfigurement, which can further add to stigma.³⁵ Stavudine-based combinations cause lipodystrophy, whilst Nevirapine can cause rashes. Another reason why respondents on ARVs experience personalised stigma more than those not on medication could be because taking ARVs could precipitate a discriminatory attitude from the public. In a study conducted in China in 2007, 43.8% of respondents claimed that they had been treated differently by their neighbours and friends after their neighbours and friends knew that they were taking Highly Active Antiretroviral Therapy (HAART).³⁶

A statistically significant association was observed between educational status, marital status, respondents’ awareness of their HIV status and disclosure stigma. This was also observed in a 2006 Niger Delta study which found that married respondents, respondents with no formal education and respondents who have known their status for less than 2 years were more likely to experience disclosure stigma.³⁷ In this study, respondents with tertiary education were the least stigmatised in terms of disclosure stigma whilst respondents with primary education were the most stigmatised (χ² = 9.211, p = 0.019). Married respondents experienced more disclosure stigma than the others (χ² = 8.747, p = 0.033). This is similar to the findings of a study carried out South Africa in 2006.³⁸ Respondents who had known their HIV status for between 6 months to 2 years experienced the most disclosure stigma (χ² = 7.986, p = 0.018). This observation is consistent with a 2003 study carried out in Washington, USA, which discovered that the length of time after a PLWHA discovers his status is highly correlated with disclosure stigma.³⁹ A statistically significant association was not observed between socio-demographic characteristics and negative self image stigma and public attitude stigma. This is similar to what was observed in a study carried out in Kenyatta, Kenya in 2007.⁴⁰ The results of this study show that there was no statistically significant association between stigma and medication adherence, even though respondents who were not stigmatised were more adherent (90.8%) compared to respondents who experienced stigma (87.0%). This is consistent with a 2006 study done amongst African-Americans in Maryland, USA, where it was found that respondents who reported having missed medication doses also experienced higher stigma.⁴¹

1. The government should, in collaboration with NGOs and the mass media, educate the general public on HIV and AIDS with the view to reducing discrimination of PLWHAs and consequently reduce the public attitude stigma experienced by PLWHAs.
2. The government and NGOs should make stigma assessment an integral part of the monitoring and evaluation of HIV-related programmes geared towards PLWHAs. Programmes which reduce the stigma experienced by the participants should be adjudged to be more effective and efficient than other programmes with little or no effect on stigma reduction.
3. The PLWHAs should be encouraged to participate actively in support groups. This will reduce the public attitude stigma experienced by them in the long run.
4. More research should be done by researchers locally on the various stigma coping mechanisms available; PLWHAs should be encouraged and trained to practise such coping strategies to enable them to overcome the stigma associated with their condition.

The medication adherence of the respondents on ARV medication was very good (89.4%). Tiredness of taking medication was the main reason why respondents on antiretroviral medication skipped their doses (52.2%). Removing ARVs from labelled containers and putting them in unlabelled pill boxes was the adopted coping strategy.

Respondents having no formal education, the Hausa respondents, respondents on medication and respondents who have been attending the HIV clinic for over 2 years experienced personalised stigma the most. An association was also established between disclosure stigma and the education level of respondents, their marital status, as well as respondents’ awareness of their HIV status.

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