Paradox of HIV stigma in an integrated chronic disease care in rural South Africa: viewpoints of users and providers

Background: An integrated chronic disease management (ICDM) model was introduced by the National Department of Health in South Africa to tackle the dual burden of HIV/AIDS and non-communicable diseases. One of the aims of the ICDM model is to reduce HIV-related stigma. There is a dearth of literature on reduction of HIV stigma attributable to the ICDM model. This paper describes the viewpoints of health care users and providers on HIV stigma in an ICDM model in rural South Africa. Methods: A qualitative case study of HIV stigmatisation in the context of the implementation of an ICDM model in seven primary health care (PHC) facilities and their catchment communities was conducted in 2013 in the rural Agincourt sub-district, South Africa. Eight Focus Group Discussions were used to obtain data from 61 purposively selected participants who were 18 years and above. Seven In-Depth Interviews were conducted with the nurses-in-charge of the facilities. The transcripts were thematically analysed using MAXQDA 2018 qualitative software. The emerging themes on HIV stigma and HIV-related concerns were inductively analysed. Results: Both service providers and users perceived implementation of the ICDM model may have led to reduced HIV stigma in the facilities. On the other hand, service users and providers thought HIV stigma increased in the communities because community members thought that home-based carers visited the homes of HIV-infected people. Service users thought that routine HIV testing, intended for pregnant women as stipulated in the World Health Organization guidelines, was associated with unwanted pregnancies among adolescents who wanted to use

contraceptives but refused to take a HIV test as a precondition for receiving contraceptives. Caregivers of ill persons wanted full disclosures of the HIV status of their family members to enable them to protect their health and contribute to enhancing adherence to anti-retroviral therapy of HIV-infected family members. than the general population [1]. The HIV burden in South Africa is unequal by race, age and sex. The prevalence in black populations is 40-50 times that of white (2) and age-adjusted HIV prevalence differs significantly between women (26%) and men (19%) (3). In adolescents, the risks of infection are eight times higher in females than males (2). One of the main challenges People Living with HIV (PLWH) face is stigmatisation which is considered to occur at three levels: enacted, anticipated and internalized. Enacted stigma occurs when PLWH believe they experience prejudice and discrimination (4,5). Anticipated stigma occurs when PLWH have an expectation that they will experience prejudice and discrimination (6). Internalized stigma refers to a situation where PLWH endorse the negative beliefs and feelings associated with HIV/AIDS (5). 4 HIV stigmatisation could negatively impact achievement of the zero discrimination and 95-95-95 (i.e. 95% of people who live with HIV knowing their status, 95% of people who know their status receiving treatment and 95% of people on HIV treatment having a suppressed viral load) targets of ending the HIV/AIDS epidemic by 2030 in the context of the Sustainable Development Goals (SDGs) (7). However, a study in Cambodia showed that an integrated care for HIV/AIDS, hypertension and diabetes can act as an impetus to reduce HIV stigma (8).

Conclusions
To address HIV stigmatisation in the context of the dual burden of HIV and chronic non-communicable disease (NCDs) in South Africa (9,10), the National Department of Health in 2011 introduced an Integrated Chronic Disease Management (ICDM) model as a pilot intervention programme in primary health care (PHC) facilities using the health systems approach (11,12). The purpose of the ICDM model of care is to leverage the HIV vertical programme to support or scale up services for NCDs to reduce HIV stigmatisation and to improve health outcomes of patients with NCDs (8). The model has a facility component in which facilities are reorganised to enable providers to offer services for HIV and NCDs in a 'one-stop-shop' in designated chronic care areas and a community component in which a primary health care (PHC) outreach team, made up of a nurse and community health care workers, visit patients' homes to provide home-based care and link clinic defaulters back to care (13).
Little is known about HIV stigmatisation in the context of the ICDM model of care.
The aim of this research was to assess HIV stigma from the viewpoints of health care users and providers in a rural setting in South Africa.  (14).

Study design and population
This qualitative research is a case study of implementation of an ICDM model in PHC facilities and their catchment communities, and a part of a broader mixed methods research project which evaluated the quality of care in the ICDM model (15) in the study setting. The study population consisted of clients 18 years and above being managed for HIV, hypertension and diabetes in the seven PHCs in the sub-district.
The Facility Managers (i.e. professional nurses-in-charge of the seven facilities) were also considered part of the study population because of their viewpoints as service providers and facility managers.

Inclusion and exclusion criteria
Patients diagnosed with and being managed in the health facilities for HIV, hypertension, and diabetes were eligible to participate in the study. Inclusion criteria were being on treatment six months before the ICDM model was

Quality assurance
The PI had a two-day training session with two senior qualitative field workers who had worked in the Agincourt HDSS for at least 10 years. The PI briefed field workers about the purpose of the study and discussions were held on how to administer the topic guide and facilitate the discussions encouraging participation and balanced, coherent discussion. The audio recordings of the FGDs were translated and transcribed into English by the two qualitative field workers. A third qualitative field worker, who was blinded to the other two field workers, validated the transcriptions by listening to two of the seven audiotapes and translating them into English. There were no major differences between the first and second transcriptions. A similar procedure was used to assure data quality for the IDIs.

Data analysis
The transcribed FGDs and IDIs were thematically analysed using MAXQDA 2018 qualitative software. The emerging theme on HIV stigma and HIV-related concerns were inductively analysed. The PI coded the data and developed a codebook. The codes were verified by the co-authors through the reading and re-reading of the quotes. This paper focuses on the theme on HIV stigma and HIV-related matters.

Results
The viewpoints of healthcare users and providers on HIV stigma and HIV related 8 concerns are presented below. Verbatim quotes from users and providers are used to illustrate the main HIV theme and subthemes on enacted, anticipated and internalised domains of stigma.

Socio-demographic characteristics of the study population
Sixty-one (61) black adult South Africans (43 females and 18 males) participated in the eight FGDs. The higher number of female than male participants reflects the female: male ratio of 7:3 in a population-based study conducted earlier in the study setting (16). All the seven facility managers were females aged 40 to 55 years.
Reduced HIV stigma in the health facilities A facility manager, whose views represented that of many managers, reported that the ICDM model of care reduced HIV stigma by other clients due to non-segregation of patients managed for chronic diseases in the same clinic. This was because the former practice of segregating patients according to the illness they were being managed for made it easy to identify who was receiving treatment for HIV/AIDS in the health facilities.

You find a person [family member] being told by the nurse that she has HIV, but she
[patient] will not tell the family that she is having HIV. She will get sicker and she will not tell you and you will go around to the clinics and hospital trying to find a

Discussion
This study showed convergent viewpoints of service users and providers on the ICDM model being associated with reduced HIV stigma in the health because clients managed for HIV and NCDs were mixed together in the waiting and consultation rooms. On the other hand, both users and providers also had convergent perceptions of HIV stigmatisation in the communities which were related to the recounted practices of HBCs visiting the homes of PLWH. Other findings, from the viewpoints of users, suggested nurses stigmatised HIV positive pregnant women for being pregnant; and conducted routine HIV testing of non-pregnant adolescents who wanted to use contraceptives; hence, unwanted pregnancy was an unintended consequence of non-use of contraceptives due to adolescents' refusal to take a routine HIV test. Finally, caregivers wanted HIV testing and/or disclosure of HIV status of sick family members which they perceived was an enabler for them to support PLWH to adhere to ART and to take preventive measures from being infected with HIV.
The pattern of HIV stigmatisation observed in this study is a paradox. On the one hand, the ICDM model was associated with HIV stigma reduction in PHC facilities in the study setting, as has been reported in Cambodia where HIV care was integrated with those of hypertension and diabetes in designated hospitals (8). However, the model was related to HIV stigmatisation in the communities where HBCs traced clients who defaulted from the clinics for the purposes of linking them back to care. Routine HIV testing for adolescents in the study setting was perceived to be a barrier to uptake of reproductive health services and contravened South Africa's Children's Act (19). Section 134 of the Act facilitates children's access to contraception with the aim of preventing sexually active children ≥ 12 years from contracting sexually transmitted infections (including HIV) or falling pregnant (19).
Routine HIV testing, which is intended for pregnant women, has its origin in the guideline on HIV testing established by the World Health Organization (WHO) in 2004 (20). The guideline recommends routine HIV testing for all pregnancy-related visits by healthcare providers, especially in high HIV transmission areas with the intention of reducing mother-to-child HIV transmission. This study showed evidence suggestive of health workers' misapplication of the WHO guideline, through refusal to provide contraceptives to adolescents who declined to take an HIV test, led to unintended consequences such as unwanted pregnancy which in turn was viewed as a key influence on poverty exacerbation.
The WHO guidelines for HIV testing and counselling for adolescents living with HIV recommend early and full disclosure of HIV status of children of school age as this improves ART adherence(21). The findings of this study suggests that parents or guardians wanted routine HIV testing and/or disclosures of the HIV status of their adolescent wards when they were ill. Parents thought this would enable them to take preventive measures from being infected with HIV, provide care and ensure adherence to ART. This is corroborated in a study in South Africa that showed that early and full disclosure is strongly associated with improved adherence amongst ART-initiated adolescents 10-19 years of age; hence, disclosure may be an essential tool in improving adolescent adherence and reducing mortality and onwards transmission (22).

Conclusions
Application of a comprehensive ICDM model was associated with reduced HIV stigma in the health facilities, but was linked to stigmatisation in the communities. Routine HIV testing, originally intended for pregnant women, of non-pregnant adolescents who desired to use contraceptives was related to unwanted pregnancies. Refusal to provide contraceptives to adolescents who declined to take an HIV test could have far reaching implications for adolescent-friendly reproductive health services.

Consent for publication
Not applicable.

Availability of data and materials
The datasets generated and/or analysed during the current study are not publicly available due to the need to protect the identity of the patients and health facilities in which the study was conducted as stated in the informed consent, but are available from the corresponding author on reasonable request.