Structural levels of stigma and access to anti-retroviral therapy in Nigeria

Kingsley Oturu, Oonagh Obrien and Barbara McPake Institute for international Health and Development, Queen Margaret University, Edinburgh, Scotland UK.EH21 6UU Correspondence to Kingsley Oturu at koturu@qmu.ac.uk or 01314740000

Acknowledgement
Queen Margaret University, Edinburgh is acknowledged for providing funding for this PhD research. Dr. Philomena EzoEsson, HOD Sociology Department, University of Abuja, Nigeria is also acknowledged for her supervisory support in Nigeria

Introduction Access to antiretroviral therapy is desperately needed in Nigeria. Increased access to anti-retroviral therapy for HIV treatment contributes to improved quality of life, reduced health care admission costs and may assist in stigma reduction. However, results of this PhD study suggest that stigma still poses a major barrier to access to ARVs. This study delineates internal and external stigma, the different levels and dimensions of stigma as depicted in figure 1.. In this paper, it is argued that stigma occurs along different concentric levels and that different innovative strategies need to be formulated for each type of stigma. For the purpose of this paper, stigma is defined as a non desired discrediting attribute that links a person to an undesired stereotype. The presence of the discrediting attribute (in the case of this PhD study, HIV infection), is what causes the stigma. Stigma is usually identified by the social reaction or effects of prejudice and discrimination. For the purpose of this paper, prejudice is a hostile attitude towards someone with a discredited attribute. However, discrimination is an unjust distinction in treatment of different categories of people based solely on grounds of possessing a discredited attribute. For example, refusing a HIV positive person a travel visa or job due solely because of his/her HIV status. It is a behavioural or structural mechanism that actively limits the life chances or choices of a person with a discredited attribute. These effects or manifestations of stigma are usually based on emotional responses caused by stereotypical beliefs. Methodology Using a grounded theory methodology, 30 patients living with HIV/AIDS were recruited and interviewed using semi-structured interviews. The digital recordings of the interviews were fully transcribed and analysed using classic grounded theory analysis (open, selective and theoretical coding). The results were also triangulated with analysis of related preliminary and secondary literature. Findings The social connection theory was also developed in this PhD study to explain how people access HIV treatment. The social connection theory on access suggests that patients are able to overcome stigma and other barriers to accessing ARVs through social connectors who connect them to the relevant channels of HIV treatment. Social connectors are social actors (such as friends, family members or religious leaders) that support the patient in overcoming the different barriers and access HIV treatment. Through social connections, patients are able to gain access to resources and information that enables them to access HIV treatment. The theory is related to the linking dimension of social capital. Through social connections, participants in this research were able to overcome stigma, financial, organisational and geographical barriers to access treatment. Their ability to access treatment and overcome stigma were shaped by structural influences of the economy, politics, gender roles/relations and religion.

Figure 1. Structural Stigma model Different levels of stigma Different levels of stigma were found to affect access to ARVs. These include self, familial, community, institutional and organisational stigma. Self-stigma. The HIV positive patient may not experience outward prejudice or discrimination from the society but internalises the stigmatised process. A patient with self stigma feels that everyone is aware of his/her diagnosis, becomes depressed and attempts to isolate him/herself. Isolation I can isolate myself because I will begin to look at everyone passing believes that Im HIV positive or people are discussing about me. Somebody begins to isolate himself. He begins to dissociate himself from people when they are doing something (Patricia). familial stigma At another level, patients may experience familial stigma. This is stigmatisation emanating from those that are familiar with the patient. This may include family members or friends. Findings from this PhD study suggest that they may actually discriminate against the HIV patient. For me to be alive here is the mercy of God. And I thank God, everyday. Even this minute, Im still thanking my God because in fact, my family members abandoned me. Even my husband packed his things and left So even when they confirmed, it just kept silentYes so my elder brother said that they should pursue me from the compound. That I should not stay there. So they pursued me. (Martha) Community stigma Community stigma was also experienced by some participants. They experienced discriminatory behaviour from other members of the community. This may be active like exclusion of enrolment in secondary schools or refusal to buy wares from a HIV positive person. Community stigma may also manifest as projectory stigma. In projectory stigma, persons related to the HIV patient are stigmatised because of the association even though they are HIV negative. Do you know that in a class then that was having more than 50 kids in one class, because my son was already in school, he was given a single long bench alone to sit. All the others were sharing 6...7 to one bench but my child was given one. And the second one when my daughter wanted to enter a nursery school, children were actually enrolling we came with other children and they were enrolling. When they reached my child they said no, the school is filled up and yet they were asking the next person whats the name of your child? You see? (John) Structural stigma Structural stigma may manifest as institutional stigma where policies are purposely set out to discriminate against the HIV patient. For example prospective employees of banks are forced to do the HIV test and excluded if HIV positive. . It could also manifest in religious institutions such as churches and mosquesAnother form of structural stigma is organisational stigmatisation. In this type of stigma, the organisational arrangements of an organisation ( such as the hospital ) inadvertently stigmatises the patient. This include selective administration of universal procedures (such as wearing gloves), segregating of patients into special HIV wards, having special HIV treatment days and having separate HIV treatment facilities from the mainstream hospital. Discussion This study identifies different levels of stigma. Stigma is differentiated from prejudice and discrimination which are manifestations of stigma. Self-stigma may require a combination of strategies such as counselling, psychotherapy, self-help books and social support (such as support groups). Familial stigma will require targeting of families in health promotion campaigns and could include family counselling. The health and social service should support the patient in deciding which friend or family member to disclose to and also in the process of disclosure. To tackle community stigma, thee community should be mobilised using health promotion campaigns, film shows and community group discussion forums. Innovative social marketing approaches are needed as well as innovative ways of using new media such as face book Institutional and organisational stigma will require training and retraining of health care staff and other commercial staff. It will require advocacy to policy makers and legislation to protect PLWHA from prejudice and discrimination at work or in the community based on their HIV status. It may require the formation of a disability and diversity agency that will provide free legal services and press for prosecution of those who discriminate. Health care workers should also be provided with protective equipment and supported against projectory stigma. Efforts should be made to inculcate HIV services with mainstream hospital services instead of the unnecessary segregation of HIV patients into HIV sections and HIV wards. Conclusion This study suggests that stigma occurs at different levels. These levels of stigma are affected by pressures from structural drivers in the economic, gender and religious/spiritual dimensions of the society. There is no one size fits all strategy for tackling stigma. To tackle HIV related stigma effectively, each level of stigma will require different coordinated strategies that takes the local socio-cultural context into consideration. Further research is needed on level of significance of different structural drivers in influencing stigma and research evidence to guide Implantation and evaluation of strategic structural programs.

Structural levels of stigma and access to anti-retroviral therapy in Nigeria

Institute for international Health and Development, Queen Margaret University, Edinburgh, Scotland

Kingsley Oturu, Oonagh Obrien and Barbara McPake Correspondence to Kingsley Oturu at koturu@qmu.ac.uk

Acknowledgement
Queen Margaret University, Edinburgh is acknowledged for providing funding for this PhD research. Dr. Philomena EzoEsson, HOD Sociology Department, University of Abuja, Nigeria is also acknowledged for her supervisory support in Nigeria

Figure 1. Structural Stigma model Different levels of stigma Different levels of stigma were found to affect access to ARVs. These include self, familial, community, institutional and organisational stigma.

Introduction
Access to antiretroviral therapy is desperately needed in Nigeria. Increased access to anti-retroviral therapy for HIV treatment contributes to improved quality of life, reduced health care admission costs and may assist in stigma reduction. However, results of this PhD study suggest that stigma still poses a major barrier to access to ARVs. This study delineates internal and external stigma, the different levels and dimensions of stigma as depicted in figure 1.. In this paper, it is argued that stigma occurs along different concentric levels and that different innovative strategies need to be formulated for each type of stigma. For the purpose of this paper, stigma is defined as a non desired discrediting attribute that links a person to an undesired stereotype. The presence of the discrediting attribute (in the case of this PhD study, HIV infection), is what causes the stigma. Stigma is usually identified by the social reaction or effects of prejudice and discrimination. For the purpose of this paper, prejudice is a hostile attitude towards someone with a discredited attribute. However, discrimination is an unjust distinction in treatment of different categories of people based solely on grounds of possessing a discredited attribute. For example, refusing a HIV positive person a travel visa or job due solely because of his/her HIV status. It is a behavioural or structural mechanism that actively limits the life chances or choices of a person with a discredited attribute. These effects or manifestations of stigma are usually based on emotional responses caused by stereotypical beliefs.

Level of Stigma

Effect HIV positive patient may not experience outward prejudice or discrimination from the society but internalises the stigmatised process. He/she feels that everyone is aware of his/her diagnosis, becomes depressed and attempts to isolate him/herself Emanates from those that are familiar with the patient. This may include family members or friends. Findings from this PhD study suggest that they may actually discriminate against the HIV patient. I can isolate myself because I will begin to look at everyone passing believes that Im HIV positive or people are discussing about me. (Patricia). Even my husband packed his things and left ... so my elder brother said that they should pursue me from the compound. That I should not stay there. (Martha)

Self

Familial

Community Structural

Discussion
This study identifies different levels of stigma. Stigma is differentiated from prejudice and discrimination which are manifestations of stigma. Self-stigma may require a combination of strategies such as counselling, psychotherapy, self-help books and social support (such as support groups). Familial stigma will require targeting of families in health promotion campaigns and could include family counselling. The health and social service should support the patient in deciding which friend or family member to disclose to and also in the process of disclosure. To tackle community stigma, thee community should be mobilised using health promotion campaigns, film shows and community group discussion forums. Innovative social marketing approaches are needed as well as innovative ways of using new media such as face book Institutional and organisational stigma will require training and retraining of health care staff and other commercial staff. It will require advocacy to policy makers and legislation to protect PLWHA from prejudice and discrimination at work or in the community based on their HIV status. It may require the formation of a disability and diversity agency that will provide free legal services and press for prosecution of those who discriminate. Health care workers should also be provided with protective equipment and supported against projectory stigma. Efforts should be made to inculcate HIV services with mainstream hospital services instead of the unnecessary segregation of HIV patients into HIV sections and HIV wards.

Methodology
Using a grounded theory methodology, 30 patients living with HIV/AIDS were recruited and interviewed using semistructured interviews. The digital recordings of the interviews were fully transcribed and analysed using classic grounded theory analysis (open, selective and theoretical coding). The results were also triangulated with analysis of related preliminary and secondary literature.

Findings
The social connection theory was also developed in this PhD study to explain how people access HIV treatment. The social connection theory on access suggests that patients are able to overcome stigma and other barriers to accessing ARVs through social connectors who connect them to the relevant channels of HIV treatment. Social connectors are social actors (such as friends, family members or religious leaders) that support the patient in overcoming the different barriers and access HIV treatment. Through social connections, patients are able to gain access to resources and information that enables them to access HIV treatment. The theory is related to the linking dimension of social capital. Through social connections, participants in this research were able to overcome stigma, financial, organisational and geographical barriers to access treatment. Their ability to access treatment and overcome stigma were shaped by structural influences of the economy, politics, gender roles/relations and religion.

Conclusion
This study suggests that stigma occurs at different levels. These levels of stigma are affected by pressures from structural drivers in the economic, gender and religious/spiritual dimensions of the society. There is no one size fits all strategy for tackling stigma. To tackle HIV related stigma effectively, each level of stigma will require different coordinated strategies that takes the local sociocultural context into consideration. Further research is needed on level of significance of different structural drivers in influencing stigma and research evidence to guide Implantation and evaluation of strategic structural programs.