Naspar Review by Jacana Media

NETWORK OF AFRICAN PEOPLE LIVING WITH HIV, SOUTHERN AFRICA REGION Ensuring influence of PLHIV on decision making and HIV and AIDS response

NAPSAR+ Review A review on the attitudes of health service providers serving PLHIV, and situational assessment of people with disability and old age people access to HIV treatment in Botswana, Lesotho, Mozambique. South Africa and Swaziland.

1. Executive summary This report presents findings of a review of efforts in five SADC countries (Botswana, Lesotho, Mozambique, South Africa and Swaziland) to improve attitudes of health service providers serving people living with HIV. The review was commissioned by the Network of People Living with HIV and AIDS for the Southern Africa Region (NAP+SAR). The findings of the review were largely in line with other recent studies which have found that respondents from Southern Africa experienced high levels of stigma in health care settings. The Southern African region scored the highest in people having challenges to access HIV prevention services, treatment care and support. In addition, limited organizational support and limited management capacity restricted the ability of health care workers to cope appropriately with the impact of AIDS at work1.

Key findings Health care workers and service points • Stigma in health care settings seems to persist, although there was also acknowledgement from both service providers and recipients that the situation is improving. One of the main challenges is that health care workers need an opportunity and spaces to be able to address their own values and attitudes that lead to stigma. • There were perceptions that stigma continues to be a barrier to access social justice and rights of those living with and affected by HIV and AIDS. • The lack of understanding of stigma, that has resulted in the perception that stigma is a ‘soft issue’, is also persistent. The family and health care settings were mentioned as the two social environments where most stigma experiences were highest and most debilitating. • There are no deliberate national strategies to address stigma. South Africa developed a National Stigma Framework in 2006 but has not implemented it thus far. • All countries have HIV/AIDS counselling strategies to provide a gateway into accessing services of treatment, care and support. However there is a disconnect between policy (which is good on paper) and practice in health care facilities.

Recommendations • A strong legislative framework is necessary to support implementation and translation into law of HIV counselling and testing strategies and policies, so as to create legal obligations and provide protection for individuals to claim their rights and address stigma. Such an intervention would also provide an enabling environment for implementation of workplace policies and programmes including the health care sector. • Networks of PLHIV must critically analyse testing models and ensure that they do not result in violations of human rights or undue burden on certain groups (such as women). Testing models that violate privacy and autonomy should be rejected. 1 ‘We are also dying like any other people, we are also people’: perceptions of the impact of HIV/AIDS on health workers in two districts in Zambia’, Oxford University Press in association with The London School of Hygiene and Tropical Medicine, Health Policy and Planning 2007;22:139–148

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• Networks for PLHIV must ensure that testing models adequately recognise the gender dimensions of HIV and that legal frameworks that protect women from abuse are in place. • Testing models should be monitored and evaluated to ensure that they are implemented as per national guidelines. • Addressing stigma in health care workers could benefit those seeking services in clinics; interventions must focus on the individual, environmental and policy levels. It important to have ‘buy in’ from health care workers that stigma is a barrier to effective prevention and mitigation of HIV/AIDS (a theoretical understanding of stigma), and be able to act on the stigma through implementation of evidence-based interventions. • NAP+SAR and its partners (networks and associations of PLHIV in each SADC country) should lobby for national stigma frameworks. In South Africa, NAP+SAR and networks and associations of PLHIV should engage with the government to ensure that its strategy is implemented. • An audit of health worker knowledge and attitudes, particularly in relation to stigma, should be carried out in each country. • NAP+SAR and its partners should lobby for a curriculum for health personnel which includes sensitisation of health workers on the impact of social and structural factors which impact on health decisions, as well as on of the complexities of behaviour change. • Counsellors particularly, and health personnel in general, should continuously receive training to provide more effective and integrated services for people coming to test for HIV as well as people already living with HIV.

2. Study methods and process A desk review, personal interviews and focus group discussions were conducted to achieve the aims of the review. A team led by the Centre for the Study of AIDS at the University of Pretoria was established to oversee the research process. Personal interviews and focus group discussions were carried out by a collaborative team of the University of Pretoria and Networks of Persons Living with HIV and AIDS in the selected countries (LENNEPHWA, BONEPHWA, RENSIDA and SWANEPHA). The focus group discussion questions were concerned with establishing: • access to health services; • protection of rights; • HIV testing and confidentiality issues; • experiences of stigma from the family, health care service points, the community and the justice system; • health seeking attitudes of people living with HIV; and • structural barriers and enablers in accessing rights.

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Interviews and focus group discussions were conducted in English in four countries and in Mozambique, Portuguese and Shangaan were also used.

Questionnaires A mixed-method approach was used. Three sets of simple questionnaires were used to conduct individual interviews and focus group discussions. These consisted of a qualitative discussion guide for focus groups and two quantitative evaluation tools, which required true or false responses.

Ethical considerations Participants were given information relating to the general purposes, the particulars of involvement and possible hazards and inconveniences relating to the group discussions during recruitment, and on the day of the focus group discussions. Confidentiality and voluntary participation were emphasised. Reasonable time was given for participants to reflect on the information and the researcher asked if the participants had questions before beginning the sessions. Participants were mostly on time for sessions and as a result, there were minimal disruptions. A letter outlining the study purpose, methods and process was sent out to relevant government ministries.

Limitations The research relied on co-ordination between multiple relationships; this included building relationships with networking partners in the different countries. Understandably, this was a time consuming process and not easy as networks of PLHIV, as well as other civil society partners, had other priorities. Attempts to work with NAPWA in South Africa were unsuccessful, and in the interests of time, support groups were accessed directly by the research team. Accessing officials from Government was mostly not possible. The University of Pretoria team was at times viewed by partners as representing NAP+SAR, and this perception had its own challenges. There was a sense that the limited resources for the project were not an incentive for partner networks and associations in the five countries.

3. Introduction According to the UNAIDS (2010) ‘UNAIDS report on the global AIDS epidemic’ an estimated 22.5 million people were living with HIV in sub-Saharan Africa at the end of 2009, including 2.3 million children. During 2009, an estimated 1.3 million Africans died due to AIDS-related illnesses. Almost 90% of the 16.6 million children orphaned by AIDS live in sub-Saharan Africa.2 The total number of new infections in Africa in 2009 was 2 UNAIDS (2010) ‘UNAIDS report on the global AIDS epidemic’ – 2010 < http://www.unaids.org/globalreport/>

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estimated to be 1.8 million.3 This indicates that despite important progress made, AIDS remains a major global health priority.4 According to the UNAIDS (2010) ‘UNAIDS report on the global AIDS epidemic’ Southern Africa remains the worst impacted by AIDS; in South Africa the HIV prevalence amongst adults is 17.8% and in three other southern African countries, the national adult HIV prevalence rate exceeds 20%. These countries are Botswana (24.8%), Lesotho (23.6%) and Swaziland (25.9%). Background information on the latest HIV prevalence rates of the five Southern African Development Community (SADC) countries relevant for this study i.e. (Botswana, Lesotho, Mozambique, South Africa and Swaziland) is provided below.

Botswana The total population of Botswana was estimated to be 2 million in 2009.5 According to the Botswana country report of 20106, 350,557 people were estimated to be living with HIV at the end of 2009.7 Of these 331,432 were adults aged 15 years and above; 192,403 of that number were women aged 15 and above, while 19,125 were children aged 0-14 years. According to the same report adult HIV prevalence between the ages of 15-49 was estimated to be 24.6%. In 2008 the Botswana AIDS Impact Survey (BAIS) estimated that 17.6% of the population aged 18 months and above were HIV positive in the same year.8 The preliminary Sentinel Surveillance of 2009 shows that the prevalence rate among pregnant women between 15-49 years was 33.5% since 2005.9 However, the prevalence rate of antenatal clinic attendees of women aged 20-24 has reduced from 38.7% in 2001 to 27.9% in 2008.10

Lesotho Lesotho has an estimated population of 2.1 million.11 According to Lesotho’s 2010 country report,12 the population growth rate has decreased from 1.5% in 1996 to 0.08% in 2006.13 This is partly attributed to the impact of HIV epidemic. The total number of people living

3 As above 4 UNAIDS AIDS epidemic update (2008) 8 5 UNFPA State of the world population 2009: Facing a changing world: Women population and climate (2009) 85 6 NACA ‘Government of Botswana Country Report: United Nations Special Session on HIV/AIDS (UNGASS)’ (2010) 7 As above, 10. The report was based on the study conducted by the National AIDS Coordinating Agency ( NACA) on HIV/AIDS in Botswana: Estimated trends and implications based on surveillance and modelling (2008) http://data.unaids.org/pub/ Report/2010/botswana_2010_country_progress_report_en.pdf (accessed 18 August 2010) 8 As above 9 http://data.unaids.org/pub/Report/2010/botswana_2010_country_progress_report_en.pdf (accessed 18 August 2010) 10 UNAIDS (n 4 above) 28 11 UNFPA (n 5 above) 88 12 NAC (National AIDS Council), ‘Government Lesotho Country Report: United Nations Special Session on HIV/AIDS (UNGASS)’ (2010) 13 As above, 12

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with HIV (PLHIV) is estimated to be 280,000.14 Out of these, 260,000 are HIV positive adults between the ages of 15-49 and 21,000 are children between 0-14 years. According to the UNAIDS report, adult HIV prevalence rate was 23.2% in 2008.15 HIV prevalence in Lesotho is the third highest in the world.16

Mozambique The population of Mozambique is estimated at 22.9 million.17 The estimated national prevalence among the adult population calculated by Estimation and Projection Package (EPP) for 2009 was 15%, 18bearing in mind that possible variation in the estimates lay between 14-17%.19The report indicates that the southern region of Mozambique has the highest prevalence rates (21%), followed by the central region (18%) and the northern (9%).20 The HIV prevalence rate estimates among pregnant women (15-49 years old) attending ante-natal care was 15% in 200921 and 14.1% among those between 15-24 years.22 It is, however, higher between the age group of 20-24 (18%). The report does not provide information on the number of children living with HIV. According to the UNAIDS/WHO epidemiological fact sheet, there were 100,000 children affected by HIV in 2007.23 The number of people who died of AIDS-related illnesses was 81,000, while the number of children orphaned by HIV (age 0-17) was 400,000 in 2007.24

South Africa South Africa’s population is estimated to be 50.1 million.25 According to the 2008 UNAIDS report, South Africa has the largest number of PLHIV, estimated at 5.7 million (18.1%).26 This estimate varies from the Statistics South Africa and Human Sciences Research Council (HSRC) estimates which put the number of PLHIV at 5.2 million. According to a populationbased household survey of 2008, the HIV prevalence rate of people above the age of 2 was around 11%.27 South Africa has almost two decades of antenatal sentinel surveillance data conducted in all nine provinces. According to the 2008 surveillance data, national HIV prevalence among

14 As above, 15 15 UNAIDS (n 4 above) 27 16 National HIV and AIDS Strategic Plan 2006-2011 (revised April 2009) 7 17 UNFPA (n 5 above) 88 18 ‘Government of Mozambique Country Report: United Nations Special Session on HIV/ AIDS (UNGASS)’ (2010) 14 19 As above 20 As above, 13 21 As above, 12 22 As above, 15 23 UNAIDS/WHO/UNICEF Epidemiological fact sheets on HIV and AIDS, Mozambique 2008 (2008) 4. http://apps.who.int/globalatlas/predefinedReports/EFS2008/full/EFS2008_ MZ.pdf (accessed 18 August 2010) 24 As above, 5-6 25 UNFPA (n 5 above) 89 26 UNAIDS Report on the global AIDS epidemic 2008 (2008) 40. 27 ‘Government of the Republic of South Africa Country Report: United Nations Special Session on HIV/AIDS (UNGASS)’ (2010), 11

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antenatal women aged 15-49 years was 29.3%.28 Figures show that there is a decline in HIV prevalence among the age group 15-24, which was 10.3% in 2005 and 8.6% in 2008.29 According to a UNAIDS/WHO report, young women between the age of 15-24 are most affected by HIV. The report estimates that 12.7% were HIV positive women and 4% were young men.30 Due to lack of classification of causes of death, it is difficult to find figures of death caused by AIDS. However, the number of deaths caused by AIDS was estimated at 400,000 in 2009.31 According to United Nations Children’s Fund (UNICEF) report, there were 280,000 children (aged 0-14) estimated to have being living with HIV and 1.4 million children (aged 0-17) were estimated to have been orphaned in South Africa in the year 2007.32

Swaziland The population of Swaziland was estimated at 1.032 million in 200733 and 1.2 million in 2009.34 According to a UNAIDS report, the HIV prevalence rate among adults was estimated at 26.1% and the estimated number of people (of all ages) living with HIV was 190,000 in 2007.35 In 2006 it was 26% and was described as the ‘highest prevalence ever documented in a national population-based survey anywhere in the world’.36 The Swaziland Demographic and Health Survey estimate was 26% in 2007.37

The prevalence rate of young women over young men (ages 15-24) was very significant in 2007, with a ratio of 22.6% to 5.8%.38 Around 100,000 women above the age of 15 were living with HIV and the number of children between the ages of 0-14 was approximately 15,000.39 The number of children orphaned by HIV was estimated at 56,000; and AIDSrelated deaths estimated at 10,000.40

28 As above, 10 29 n 27 above 30 UNAIDS/WHO/UNICEF Epidemiological fact sheets on HIV and AIDS, South Africa 2008 (2008) 5 http://apps.who.int/globalatlas/predefinedReports/EFS2008/full/EFS2008_ZA.pdf (accessed 18 August 2010) 31 n 27 above 32 UNICEF State of the world’s children 2009: Maternal and newborn health (2009) 132 33 UNFPA State of the world population 2007: Unleashing the potential of urban growth, 90 34 UNFPA (n 5 above) 90 35 UNAIDS/WHO/UNICEF Epidemiological fact sheets on HIV and AIDS, Swaziland 2008 (2008) 4.http://apps.who.int/globalatlas/predefinedReports/EFS2008/full/EFS2008_SZ.pdf (accessed 18 August 2010) 36 UNAIDS (n 26 above) 37 Government of Swaziland Country Report: United Nations Special Session on HIV/AIDS (UNGASS)’ (2010), 2 38 UNAIDS (n 26 above) 52 39 As above 4 40 As above

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Table 1: HIV prevalence in the five SADC countries Country

HIV prevalence among adults aged 15-49 years (in %) 2007 Source: UNAIDS 2008 Report on the Global AIDS Epidemic. Source: UNAIDS 2008 Report on the Global AIDS Epidemic.

2008 Source: UNGASS 2010 country reports.

2009 Source: UNGASS 2010 country reports.

Botswana

23,9

24.6

Lesotho

23.2

Mozambique

12.5

South Africa

18.1

Swaziland

26.1

4. Attitudes of health service providers serving people living with HIV (PLHIV) To understand the attitudes of health care workers, the questions were concerned with establishing: • access to health and protection of patient’s rights in health care settings (HIV testing, confidentiality and disclosure of sero status); • experiences of stigma from family, health care service points, community and justice system; • health seeking attitudes of PLHIV; structural barriers and enablers in accessing these rights in the context of HIV and AIDS, • participants views on what factors make for a make a supportive and non-stigmatising health care centre or clinic have? What are the factors that make a caring and supportive health care professional?

5. Experiences of stigma Stigma in the clinics seems to persist, however there was also acknowledgement from both service providers and recipients that the situation is improving. Certain experiences of stigmatization by PLHIV from their families and in healthcare settings were more strongly related to psychological distress than experiences occurring in other social settings41.

41 Stutterheim S.E et al 2007.

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‘Family is hard to deal with as it’s people you see every day’. ‘Health care workers do not value you compared to family’.

Table 2 - Experiences of stigma in different settings (in percentages) An extract of responses from the quantitative tool Moderate

High

Very high

Family

2.0

25.7

72.3

Health service providers (nurses, doctors, dieticians, counsellors)

7.8

5.8

86.4

Workplace

11.4

5.7

83.0

Faith based institutions

37.5

33.3

29.2

Justice Sector (Police, Magistrates, 69.2 Judges, Court Clerks, Prosecutors)

23.1

7.7

Community members

10.6

30.3

59.1

Schools

20.0

14.0

66.0

Accessing treatment at health centres The challenges faced by PLHIV as they try to access health seem to manifest at two levels: firstly at the structural and institutional level, which included differentiated treatment at health centres for PLHIV that had unintended consequences, poor procurement of drugs which resulted in people being sent home, long queues which affected people’s employment. These were experienced by PLHIV in a negative way, leading them to feel discriminated against. The second level is simply the negative attitudes of personnel within health care settings (pharmacists, doctors, receptionists, cleaners and nurses). These attitudes made it hard for persons living with HIV or AIDS to feel accepted and to process their internal stigma. Structural and institutional factors Table 3: Availability of stigma mitigation programmes and implementation Stigma Programmes & Implementation Botswana

Stigma highlighted in NSP, No deliberate stigma Programmes at a National level Stigma forms part of programmes implemented by NGO as part of existing interventions and more quantitative in approach as opposed to stand alone strategies with own plans to deal with both internal and external stigma

Lesotho

Stigma highlighted in NSP, No deliberate stigma Programmes at a National level Programmes implemented by NGO as part of existing programmes

Mozambique

Stigma highlighted in NSP No deliberate stigma Programmes at a National level Stigma forms part of programmes implemented by NGO as part of existing programmes and more quantitative in approach as opposed to stand alone strategies with own plans to deal with both internal and external stigma

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Stigma Programmes & Implementation South Africa

South Africa has developed a National Stigma Strategy under NDoH in 2006, approved in 2010 but still to be implemented. Stigma was highlighted in NSP 20007 -2011 under a specific pillar. The new NSP 2012-2016 the approach is to have three strategic priorities: universal voluntary testing, universal wellness and universal safety and dignity.

Swaziland

Table 4: Availability of ART in the five SADC countries Number of people living with HIV, 2009 Source: UNAIDS (2010) Report on the Global AIDS Epidemic 2010.

Number of people receiving ART December 2009 Source: UNAIDS (2010) Report on the Global AIDS Epidemic 2010.

Botswana

320 000 [300 000 - 350 000]

145 190

Lesotho

290 000 [260 000 - 310 000]

61 736

Mozambique

1 400 000 [1 200 000 - 1 500 000]

170 198

5 600 000 [5 400 000 - 5 900 000]

971 556

190,000*

30 337*

South Africa Swaziland

* Source: Kingdom of Swaziland National Multi-Sectoral Strategic Framework for HIV/AIDS 2009-2014

1. Health centres seem to follow different approaches to implement the same programmes In some clinics in Maputo and Maputo Province, HIV positive patients are weighed on a scale in the waiting area: the scale has been given the name SP, standing for Sao Pao. ‘Everybody knows the scale is used for PLHIV and they start mocking us’. Some participants alluded to discriminatory treatment fuelled by corruption – a state hospital pharmacy told people there was no medicine, but health personnel sold ARVs to people who paid (the national policy is that ARV’s are free). 2. Support staff, receptionists and health care-providers stigmatise PLHIV ‘I was told at the clinic by receptionist: “Today we only help normal people. Come back next week”.’ 3. Patient management in health facilities. Differentiated treatment that has unintended consequences is perceived as discriminatory by PLHIV; (treating HIV positive patients differently from others). At times it was a combination of the differentiated treatment and the attitudes of health care personnel.

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• G reen card and other forms of distinguishing documents: HIV positive patients get prescription forms that look different from the rest and perceive this as discriminatory. Other patients start asking questions and then find ways to spot PLHIV. ‘We were sitting in an HIV-sensitisation workshop in the waiting area at the clinic. Immediately afterwards a health worker said: “those with green cards go and put them on the stack over there”.’ The participant felt this separated PLHIV from other patients and exposed their status. • D ifferent queues for example PLHIV collecting ARV’s have to wait in different queues from patients collecting other prescriptions at a different point or pharmacy. ‘Patients were standing to have blood tests and the nurse called out: “Those who are here for CD4 count should go this way”. This distinguished PLHIV from the general patients and exposed their positive sero status.’ ‘We mix with patients who have come for a variety of services and the health care workers tend to call out each patient according to what they have come for; e.g. those who have come for blood test, ARV’s…’ • C onsultation hours and blood tests: one clinic allegedly took blood tests only for CD4 counts from 7.30-9.30 and for other patients the rest of the day, which exposed the status of PLHIV. 4. H ealth care facility consultation times -people reported they were sent home without being attended to because they came late even though the clinic was still open. Receptionists sent patients away before the health centre had officially closed. This indicates a lack of knowledge on the part of medical workers: ‘They don’t know what the implications of their actions are on the health of PLHIV as they do not understand about adherence and how treatment works’. uality of counselling- Other participants felt that the counselling was of poor quality 5. Q and that nurses’ training on HIV basics in particular was poor: ‘The nurses typically say “You have HIV, here’s a prescription, come back on that day” They don’t speak of safe sex, they don’t speak of condoms they give very short or no time for counselling’. ong queues and consequences for the employed 6. L Some of the unintended consequences of long queues at health care service points are that people miss hours at work and their employers start asking questions. Several people reported they arrived at the centre in the morning, and would only leave in the evening. This meant they missed a whole day of work. ‘Going for my treatment refill can be a challenge at work so I sometimes just miss collecting treatment ’cause you never know how long it will take’. Attitudes of personnel at health centres – a stigmatizing environment A key challenge to the low uptake of VCT, and other support services such as PMTCT, has been shown in different studies as being related to the attitudes of health care service providers in the different countries. Two communication modes prevailed in the counselling encounter: in theory, the counselling format was non-directive and client-centred but,

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in practice, most encounters reverted to information-based health education. Neither counselling format enabled the counsellors to acknowledge the reality of the two opposing agendas in the conversation and manage its dynamics. In order to achieve success - which, for the health service, is framed as persuading mothers to test for HIV and disclose the result – counsellors often felt compelled to be prescriptive and authoritative and reverted at times to confronting, judging and shaming mothers42. Other stigmatising attitudes of health workers are revealed in the statements below. ‘I was standing in a queue at the pharmacy. The pharmacist grabbed my green card and waved it in the air, asking: “What is this? What is this?”’ ‘The doctor told my wife to sit far away. She was shy, but had to shout to be heard. Doctors allow patients who are not HIV positive to sit close and talk about their problems.’ ‘The doctor sends everyone who visits the hospital for an HIV test before he can see them, I already knew my status and I wanted to be seen by the doctor for other things that had nothing to do with my status.’ ‘Nurses should not treat people in the queues different just because they know that I am HIV positive, they are abusing their power.’ Attitudes towards women Research shows that routine HIV testing targets mainly women (pregnant women) who come to public health facilities.43 If proper counselling is not provided and the issue of confidentiality is not properly addressed, women who are HIV positive may face violence and abuse because they will be considered the transmitters of the disease. It is therefore important that countries which opt for routine HIV testing should be prepared to provide adequate protection for women and girls from abuse.44 Health care professionals should also be trained in the social determinants of the epidemic that can create barriers to testing and other services. For example the training could explore social discourses around the meaning of breast feeding for women in society and the significance of bearing children in most communities. Other studies suggest that health professionals tend to ‘frown upon’ HIV positive women who want to have more children: this attitude sometimes results in women falling pregnant without information and assistance and the health system has to deal with the aftermath45. ‘Health workers treat HIV as a taboo and want to spend as little time as possible on the topic’. ‘They don’t support HIV positive people who want to get pregnant, or necessarily talk about it, people just get pregnant, and they know there is PMTCT. These things are talked about in communities especially support groups; we know about viral load, CD4 count and stuff, we plan ourselves’. ‘The nurses don’t like it when you are on medication and you come in positive but most women just ignore their judging attitudes’.

42 43 44 45

Ref As above, 61 As above Ref

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Table 5 Perceptions about services at clinics An extract of responses from the quantitative tool Statement

True (Over all %)

False (Over all %)

Nurses and doctors at the clinics are generally supportive of those living with HIV or AIDS; they practice confidentiality & avoid stigma and discrimination.

3.5

96.5

Health care workers at clinics discourage women whose HIV status is positive from having children.

64.0

36.0

6. Reasons why PLHIV are not satisfied with the services provided to them at the healthcare centres or clinics The main factors that undermine right to health included: • moral judgement, especially from nurses; • the queues and hospital hours; • nurses lack of knowledge for referral; and • issues of confidentiality.

7. Perceptions on what factors contribute to a caring health care service point and factors that make for a supportive health care service • Confidentiality appeared in both responses and was the most mentioned in different forms; –– Should have privacy and minimal interruptions to allow confidentiality. –– Follows professional ethics and self-discipline: not talk openly about people who have HIV in a derogatory way

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• Good treatment for opportunistic infections; • A ‘one-stop shop’ for all tests and treatment; • No staff shortages (especially doctors and pharmacists); • Shorter or no queues; • No labelling ‘HIV patients’; ‘Even where there are no special queues or sections for PLHIV they (the nurses) still come in the queue and ask what are you here for and you have to say ARV’s, there in front of everyone. Why can’t they wait till you get into the consultation room?’ • Improved linkages between support groups/HBC groups and clinics; ‘Nurses do not refer to support groups, they think NGO’s are there to eat money in the name of PLHIV, there is a lot of mistrust so we cannot work together’. • Medications to be reliably available and mechanisms to inform patients of stock outs in a timeous way; • Use of SMS (or other technologies) to remind patients of appointments and to disseminate other news; • Well trained health practitioners; and • Provision of food for those collecting treatment if these queues take a long time.

8. Factors that contribute to a caring and compassionate health care professional Respondents across a range of focus groups suggested the following would make their experience of the health care system welcoming and less stigmatising: • Health care workers, where possible, should be openly living with HIV, to create a greater sense of openness and to break down barriers; • Health care workers should put the patient first and be non-judgemental and nonstigmatising; • Health care workers must be approachable; • Health care workers should listen compassionately: even when they are not able to give help they should listen well and explain kindly; • Health care workers should promote an environment that is conducive to information exchange; • Health care workers should ensure that patients and caregivers have heard and understood the content of the information given to them; • There should be sufficient time to have questions clarified; • Confidentiality should be paramount and follow professional ethical codes – this should be accompanied by self-discipline on the part of health care workers who

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should not talk openly about PLHIV in ways which diminish their humanity. • The service should be thorough even if people wait a long time in queues, as they will appreciate the attention to detail; and • Services should be accessible to all irrespective of their sexual orientation and gender.

9. Conclusion Health care workers and service points: • Stigma in health care settings seems to persist, although there was also acknowledgement from both service providers and recipients that the situation is improving. One of the main challenges perhaps is that health care workers need an opportunity and spaces to be able to address their own values and attitudes that lead to internal and external stigma. • There were perceptions that stigma continues to be a barrier to access social justice and rights of those living and affected by HIV and AIDS. The lack of understanding of stigma that has resulted in the perception that stigma is a ‘soft issue’ is also persistent. The family and health care settings were mentioned as the two social environments where stigma experiences were highest and most debilitating. In a 2009 study, findings indicate that certain experiences of stigmatization by PLHIV from their families and in healthcare settings were more strongly related to psychological distress than experiences occurring in other social settings (Stutterheim S.E et al). • There are no deliberate national strategies to address stigma. South Africa developed a National Stigma Framework in 2006 but has not implemented it thus far. • Although not explored specifically in this review, the literature has shown that there is often limited organizational support for health care workers and limited management capacity in health care settings, across the SADC region – this restricts the ability of health workers’ ability to cope appropriately with the impact of AIDS at work46. In turn, this impacts on their attitudes towards PLHIV, resulting in some cases in deliberate or unintended stigma and discrimination.

46 ‘ We are also dying like any other people, we are also people’: perceptions of the impact of HIV/AIDS on health workers in two districts in Zambia’, Oxford University Press in association with The London School of Hygiene and Tropical Medicine, Health Policy and Planning 2007;22:139–148

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10. Recommendations • A strong legislative framework is necessary to support implementation and translation into law of HIV counselling and testing strategies and policies, so as to create legal obligations and provide protection for individuals to claim their rights and address stigma. Such an intervention would also provide an enabling environment for implementation of workplace policies and programmes including the health care sector. • Networks of PLHIV must critically analyse testing models and ensure that they do not result in violations of human rights or undue burden on certain groups (such as women). Testing models that violate privacy and autonomy should be rejected. • Networks for PLHIV must ensure that testing models adequately recognise the gender dimensions of HIV and that legal frameworks that protect women from abuse are in place. • Testing models should be monitored and evaluated to ensure that they are implemented as per national guidelines. • Addressing stigma in health care workers could benefit those seeking services in clinics; interventions must focus on the individual, environmental and policy levels. It important to have ‘buy in’ from health care workers that stigma is a barrier to effective prevention and mitigation of HIV/AIDS (a theoretical understanding of stigma), and be able to act on the stigma through implementation of evidence-based interventions. • NAP+SAR and its partners (networks and associations of PLHIV in each SADC country) should lobby for national stigma frameworks. In South Africa, NAP+SAR and networks and associations of PLHIV should engage with the government to ensure that its strategy is implemented. • An audit of health worker knowledge and attitudes, particularly in relation to stigma, should be carried out in each country. • NAP+SAR and its partners should lobby for a curriculum for health personnel which includes sensitisation of health workers on the impact of social and structural factors which impact on health decisions, as well as on of the complexities of behaviour change. • Counsellors particularly, and health personnel in general, should continuously receive training to provide more effective and integrated services for people coming to test for HIV as well as people already living with HIV.

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11. Annexure Sample size and jurisdiction Schedule of interviews FGD & Key Informants Country

Rural area

Urban Area

PeriUrban area

Total

Key Informant/s

Secondary data 2010 • MoH, • NGO

Botswana

Lesotho

• M inistry of Health • N GO - 4

Mozambique

oH, National AIDS • M Council 1, • Conselho Nacional DeCoba • M ONASO

South Africa

Swaziland

• • • •

Min Justice, MoH Dept of Labour NGO

12. Bibliography Legislation and policy documents

Botswana • Constitution of 30 September 1966 • Penal Code (Amendment) Act 5 of 1998 • Employment Equity Act 55 of 1998 • Medical Council (Professional Conduct) (Amendment) Regulations 77 of 1999 • Employment Act No. 29 of 1982 (as amended up to Statutory Instrument No. 27 of 2008) • National Strategic Framework for HIV/AIDS 2003-2009’ (2003) • National Strategic Framework for HIV/AIDS 2010- 2016 • National Policy on HIV/AIDS and Employment (2005)

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Lesotho • Constitution of Lesotho 1993 • Sexual Offences Act 29 of 2003 • The Labour Code Order of 1992 • Labour Code (Amendment) Act 5 of 2006 • Draft Bill on HIV and AIDS (2008) • National HIV and AIDS Strategic Plan 2006-2011(Revised April 2009) • National HIV and AIDS Policy (2006)

Mozambique • The Constitution of Mozambique 1990 • Penal Code of Mozambique • Law 5 of 2002 • Draft Law nr. 12/2009 (Lei da Defesa dos Direitos Humanos e da Luta contra a Estigmatização e Discriminação de Pessoas vivendo com HIV e SIDA • Mozambique National Strategic Plan (PEN) 2005-2009

South Africa • Sexual Offences Act 24 of 1957 • Occupational Health and Safety Amendment Act no. 181 Of 1993 • Labour Relations Act 66 of 1995 • The Basic Conditions of Employment Act 75 of 1997 • Employment Equity Act 55 of 1998 • Medical Schemes Act 131 of 1998 • Promotion of Equality and Prevention of Unfair Discrimination Act 4 of 2000 • Code of Good Practice on Key Aspects of HIV/AIDS and employment (2000) • Occupational Safety and Health Act of 2001 • Children’s Act 38 of 2005 • The Criminal Law (Sexual and Related Matters) Amendment Act of 2007 • The National HIV Counselling and Testing (HTC) Policy Guidelines (2010) • The National HIV Counselling and Testing Campaign Strategy (2010)

Swaziland • Employment Act 5 of 1980 • Swaziland Crimes Act 6 of 1889 • Draft Sexual Offences and Domestic Violence Act of Swaziland (2006) • National Multisectoral HIV and AIDS Policy (2006) • SADC Model law on HIV in Southern Africa (2008)

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