CAMEROON October 2012

Transcription

1 CAMEROON October 2012

2 Cameroon Published by: Réseau Cameronais des Associations de Persoones Vivant avec le VIH (RéCAP+) Tsinga, PO Box 3358, Yaoundé-Messa Cameroon Some rights reserved: This document may be freely shared, copied, translated, reviewed and distributed, in part or in whole, but not for sale or use in conjunction with commercial purposes. Only authorized translation, adaption and reprints may bear the emblems of GNP+ or RéCAP Réseau Cameronais des Associations de Persoones Vivant avec le VIH (RéCAP+) Suggested citation: HIV Leadership through Accountability Programme: GNP+; RéCAP+ Cameroon PLHIV Stigma Index: Senegal Country Assessment. Yaoundé-Messa, RéCAP+.

3 Acronyms AIDS ARV ART CFAF CNLS CTA ECAM EDSC GNP+ HIV ICW IPPF IRESCO NGO OI PLHIV PVT RéCAP+ SPSS UNAIDS UPE UPEC Acquired Immunodeficiency Syndrome Antiretroviral Antiretroviral therapy Communauté Financière Africaine Franc Comité National de Lutte contre le SIDA (National AIDS Committee) Centre de Traitement Agréé (Certified treatment center) Enquête Camerounaise Auprès des Ménages (Cameroonian Household Survey) Enquête Démographique et de Santé au Cameroon (Demographic and Health Survey in Cameroon) Global Network of People living with HIV Human Immunodeficiency Virus International Community of Women Living with HIV/AIDS International Planned Parenthood Federation Institut pour la Recherche, le Développement Socio-économique et la Communication Non Governmental Organization Opportunistic infection People Living with HIV Prevention of vertical transmission Réseau Cameroonais des Associations des Personnes Vivant avec le VIH (Cameroonian Network of People living with HIV) Statistical Package for the Social Sciences United Nations Joint Programme on HIV/AIDS Unité Primaire d Echantillonnage (Primary sampling unit) Unité de Prise en Charge (Care and support unit)

4 Acknowledgements We could not present the results of this study without first extending our gratitude to the people who contributed to its achievement. Gratitude is extended firstly to the men and women living with HIV who were kind enough to complete the questionnaire. We hope that the results of this study will stakeholders in the HIV response in Cameroon to undertake actions that will benefit people living with HIV (PLHIV). Gratitude is also extended to the field staff including the team supervisors and the interviewers who worked very hard for the smooth roll-out of Stigma Index. It is also extended to the managers of Certified Treatment Centres (CTA) and Care and Support Units (UPEC), and to the leaders of people living with HIV associations who facilitated the implementation of the Stigma Index in the various sites. RéCAP+ has implemented the HIV Leadership through Accountability Programme with the financial support of GNP+ (Global Network of People living with HIV). This programme is based on checking the achievement of universal access to HIV treatment, care and prevention, requiring a coordinated response involving multiple and diverse stakeholders. We would like to thank GNP+ for their financial support; the Réseau Camerounais des Associations des Personnes Vivant avec le VIH (RéCAP+) for logistical support and expertise; and researchers within the Institut pour la Recherche, le Développement Socio-économique et la Communication (IRESCO) for their invaluable contribution. We would also like to thank Julian Hows, GNP +, for technical guidance throughout the study, Andrew Doupe, HIV and Legal Consultant, and Ernests Strazdins, data validation and review, for additional technical assistance.

5 Contents Acronyms... 3 Acknowledgements... 4 Contents... 5 List of Figures and Tables... 6 Executive Summary... 8 Major findings... 9 Major Recommendations Introduction Background on HIV-related stigma and discrimination Country Context About Réseau Cameroonais des Associations des Personnes Vivant avec le VIH (RéCAP+) Objectives Methodology What is in this report? Section 1: Background characteristics and household composition Section 2: Experience of stigma and discrimination Experience of HIV-related stigma and discrimination Access to work and health and education services Internal stigma and fears Rights, laws and policies Effecting change Section 3: Experience of testing, disclosure, treatment and having children Testing and diagnosis Disclosure and confidentiality Treatment Having children Conclusion Recommendations Notes... 82

6 List of Figures and Tables List of Figures Figure 1: Respondents disaggregated by residency Figure 2: Access to ART during pregnancy List of Tables Table 1: Sample disaggregated by region Table 2: Respondents disaggregated by age Table 3: Respondents by gender disaggregated and region Table 4: Respondents disaggregated by relationship status Table 5: Cohabitating respondents, disaggregated by number of years cohabiting Table 6: Length of time living with HIV Table 7: Respondents belonging to key populations, disaggregated by gender Table 8: Respondents disaggregated by education level Table 9: Respondents current employment status Table 10: Respondents households, disaggregated by age, number of people and children orphaned due to AIDS Table 11: Number of days in the last month in which a household member has not had enough food to eat Table 12: Average income per day Table 13: Respondents experience of and attributed reasons for stigma and discrimination in the previous 12 months, disaggregated by gender Table 14: Respondents experience of stigma and discrimination in the last 12 months, disaggregated by gender Table 15: Respondents gossiped about in the previous 12 months, disaggregated by gender Table 16: Respondents verbally insulted, harassed and/or threatened in the previous 12 months, disaggregated by gender Table 17: Respondents physically harassed and/or threatened in the previous 12 months, disaggregated by gender Table 18: Respondents physically assaulted in the previous 12 month, disaggregated by gender Table 19: Perpetrators of physical abuse Table 20: Respondents who have experienced psychological pressure or manipulation by spouse/partner in the previous 12 months when their HIV-positive status been used against them, disaggregated by gender Table 21: Respondents who have experienced sexual rejection in the previous 12 months, disaggregated by gender Table 22: Stigmatised and/or discriminated against by other people living with HIV in the previous 12 months, disaggregated by gender Table 23: Relatives/members of household experiencing stigma in previous 12 months Table 24: Respondents forced to change their place of residence or been unable to rent accommodation in the last 12 months, disaggregated by gender Table 25: Loss of job or other income source, disaggregated by gender Table 26: Reason why lost job or other income source, disaggregated by gender Table 27: Reason for dismissal from work, disaggregated by gender... 37

7 Table 28: Refused employment or a work opportunity due to HIV status, disaggregated by gender 38 Table 29: Reasons for changing duties or job description, disaggregated by gender Table 30: Access to health services Table 31: Refused access to education services in the last 12 months Table 32: Feelings experienced during last 12 months, disaggregated by gender and residency Table 33: Decisions, resignations and avoidances Table 34: Fear of gossip, insults, harassment, assault and sexual rejection in the last 12 months Table 35: Heard of the Declaration of commitment on HIV/AIDS and national policy/law which protects the rights of people living with HIV, disaggregated by gender, region, residency and age.. 44 Table 36: Discriminatory treatment by governmental, legal, and/or medical institutions in the last 12 months Table 37: Violation of rights of people living with HIV and seeking legal redress, disaggregated by gender, region, residency and age Table 38: Reasons for not seeking legal redress for rights violations Table 39: Redress through a government employee(s) or a politician, disaggregated by gender, region, and residency Table 40: Respondents, who had confronted, challenged or educated someone; sought help; or know of a support organization Table 41: Respondents identifying types of organizations which offer help in cases of stigma and discrimination, disaggregated by gender Table 42: Tried to resolve an issue of stigma and discrimination and types of support provided to other PLHIV, disaggregated by gender, region, residency and age Table 43: Ability to influence policies, laws and programmes Table 44: Most relevant areas for organizations working to eliminate stigma and discrimination against PLHIV Table 45: Reasons for undergoing HIV testing Table 46: Experience of HIV testing and voluntary consent, disaggregated by gender, region, residency and age Table 47: Counselling when having an HIV test, disaggregated by gender, region, residency and age Table 48: HIV status known, disclosure without consent, including by health care workers, disaggregated by gender, region, residency and age Table 49: Distribution of interviewees according to the way their status was known by the different people Table 50: Confidentiality of medical records Table 51: Distribution of respondents according to the reactions of people when they first knew about their HIV status Table 52: Respondents assessment of their health, disaggregated by gender, region, residency, age and being on ART Table 53: ART and treatment for OIs uptake and ability to access, disaggregated by gender, region, residency and age Table 54: Having children, including children know to be HIV-positive, disaggregated by gender, region, residency Table 55: Advised by a health care worker not to have children or been coerced into sterilization since HIV-positive diagnosis Table 56: Coercion by health care workers in relation to reproductive health services for pregnant respondents... 71

8 Stigma Index Executive Summary This study by Réseau Cameroonais des Associations des Personnes Vivant avec le VIH (RéCAP+) (Cameroonian Network of People living with HIV) is the first of its kind to be undertaken by HIV-positive people in Cameroon, and aimed to both collect and study HIVrelated stigma experiences of people living with HIV in Cameroon; and review the direct and indirect effects on individuals in order to reinforce advocacy. Methodology This study used the People Living with HIV (PLHIV) Stigma Index developed by GNP+, ICW, IPPF and UNAIDS to undertake interviews, following the standard methodology 1. The study was undertaken between October 2010 and February 2011, and involved a sample of 1284 people living with HIV drawn from 5 regions: North, East, Southwest, West and Douala/ Yaoundé. Sample of respondents Seventy percent (70) of respondents were women (n=897) and 30 were men (n=387). Nearly half of the sample (49.5) was drawn from Douala and Yaoundé with semi-urban and rural areas accounting for 26 (n= 335) and 24 (n=313) of the sample. Just over 70 of respondents (70.6) were aged between 30 and 49. Most respondents had been living with HIV for less than 10 years (92.6) with the largest percentage of respondents, 42.6, living with HIV for 1-4 years, while a further 30.5 for 5-9 years and 19.5 for less than 1 year. Over half of respondents (57.6, n=739) of respondents lived with a spouse or partner; 21.1 (n=271) had a spouse or partner but did not live with her/him; while 42.4 (n=545) were single (unmarried, divorced or widowed). Over 70 of respondents (74.7, n=959) reported that they were sexually active. On average, 5 people lived together with the respondent at the time of the survey; with over one quarter of respondents (26.1) indicating that 7 or more persons lived in their household. Over 80 of respondents (83, n=1063) indicated that they had children with over 20 of respondents (22.2, n=285) reporting children orphaned due to AIDS living in their household. Less than 20 of respondents (18.5) identified themselves with any key population identified as a member of an indigenous group; 3.4 as internally displaced person, Executive Summary

9 Cameroon approximately 2 as a man who has sex with men or sex worker, and less than 1 as lesbian, person who uses drugs, refugee or asylum seeker, or migrant worker. A significant percent of respondents reported low education levels with over 40 reporting no formal education or only primary level education (44.4, n=570); though nearly half (48.8, n=627) did report secondary school level education. The effects of poverty on the sample of people living with HIV are clearly evident. Over 60 of respondents (62.4, n=802) reported members of their families experiencing food shortage in the last month (i.e. during a month there had been three or more days when respondents' household members did not have enough food to eat). Furthermore, just under one third of respondents (32.4, n=416) were unemployed with the unemployment rate among female respondents over twice that of male respondents. In terms of income, one third of respondents live under the poverty line, again with a higher percent of female respondents (37) compared to male respondents (24). Major findings Major findings concerning the experiences of people living with HIV by area are outlined below with the full findings presented in the Conclusions. The study found that HIV-related stigma was prevalent and an ongoing part of life for the people living with HIV in Cameroon who took part in this study. Exclusion Overall, 68.7 of respondents (n=886) reported having experienced at least one form of stigma and discrimination. Over half of respondents (51.4, n=660) reported that they had been gossiped about at least once in the last year with over a quarter (27.1) indicating that it occurred, in whole or in part, because of their HIV-positive status. Access to work and health and education services Significantly higher levels of discrimination were reported by respondents in access to residency/accommodation and work (over 20) in the previous 12 months. Nearly 1 in 20 respondents reported exclusion from access to health services, including sexual and reproductive health, and education services in the previous 12 months. 9 Stigma Index

10 Stigma Index Internalised stigma and fears Internalised stigma was prevalent: 35.2 (n=452) feel shame, 29.8 (n=383) feel guilt, 28.6 (n=367) blame themselves, 20.6 (n=264) blame others and 17.8 (n=228) report low self esteem. 4.7 of respondents (n=64) reported feeling suicidal with those respondents living in rural areas more likely to report this than those living in villages or cities: The most frequent decisions made by respondents during the last 12 months because of HIV status were not to have more children (33.5, n=437), 22.4 (n=282) not to have sex, 19.6 (n=257) not to marry; 17.8 (n=229) not to attend social gathering(s); and/or 17.6 (n=226) to isolate from my family and/or friends. Rights, laws and policies The national policy/law was known to only 15.9 of respondents (n=204.) During the previous 12 months, 16.5 (n=212) of respondents reported that they were subjected to one or more discriminatory practices by governmental, legal, and/or medical institutions (n=226) respondents reported that that they experienced a rights violation within the previous 12 months, of whom 33 had sought legal redress; and of the 183 respondents who did not, over 30 cited none of the reasons mentioned (31.1), followed by no/little confidence that the outcome would be successful and insufficient financial resources to take action (by approximately 25 of respondents each). Effecting change Nearly half of respondents (46.6, n=598) felt unable to influence policies, laws and programmes at either national or local levels. In terms of the most important thing organisations should do to address stigma and discrimination, slightly less than 40 cited advocating for the rights of all people living with HIV (38, n=488). Testing and diagnosis Over one third of respondents (34.9, n=448) were referred for HIV testing when already symptomatic with no gender-based variation; while a further 18.5 (n=237) underwent HIV testing due to illness or death of husband/wife/partner/family member. Human rights violations associated with involuntary HIV testing 2 and being tested (n=x) stating they were forced to take an HIV test. 10 Executive Summary

11 Cameroon without consent 3 or any counselling 4 remains a challenge. Disclosure and confidentiality High levels of disclosure by respondents included to: health care workers (79.4), other HIV-positive people (66.8), and to social workers and other counsellors (67.8). Disclosure within relationships remains an issue for some respondents, for example, 14.3 of respondents (n=184) had not told their spouse or partner about their status Treatment 79.1 (n=1016) of respondents were taking ART with 91.1 (n=1170) indicating that they could access ART if needed. Over 60 of respondents (62, n=796) of respondents had discussed HIV treatment options and over half (54.8, n=704) had discussed other subjects such as sexual and reproductive health, sexual relations, emotional well-being, drug use, etc., with a health care professional during last 12 months. Having children Since learning the HIV status, 12.2 of respondents (n=157) have ever been advised by a health care worker not to have children, with little gender-based variation. 19 respondents (1.5) reported that they had been coerced by a health care professional into being sterilised since HIV-positive diagnosis. During the last 12 months, coercion by health care workers because of HIV-positive status was reported by 14 women (abortion) (1.6), 88 women (method of giving birth) (9.8) and 126 women (infant feeding practices) (13.9). In relation to PVT, of 813 women who had been pregnant: 21.4 (n=192) indicated that they had received ART; 10.8 (n=97) did not have access to ART; 9.8 (n=88) did not know that such treatment existed; and 48.3 (n=432) were not HIV-positive when pregnant. Major Recommendations The overall recommendation derives from the facts that among the sample there was low socio-economic status, including significant percentages of respondents reporting low levels of education and employment, as well as internalized stigma, high rates of being fearful 3 10 (n=x) reported that they were tested without their knowledge of respondents received no counselling at all, while 17.1 received only post-test counselling, and 5 received only pre-test counselling. 11 Stigma Index

12 Stigma Index about the ways they were perceived and treated in the community (with reported examples of stigmatizing and discriminatory treatment), and 4.7 of respondents reported feeling suicidal. As such, psychosocial and socioeconomic support must clearly be a priority for the Réseau Cameroonais des Associations des Personnes Vivant avec le VIH (ReCAP+), civil society, the National AIDS Programme and the Government. Concerted efforts by all the above stakeholders are required to promote positive living and provide psychosocial and socioeconomic support, including training opportunities for people living with HIV to become peer educators, capacity and network building, counselling, training, and income generation. Other specific recommendations directed to the Réseau Cameroonais des Associations des Personnes Vivant avec le VIH, civil society, the National AIDS Programme and the Government are presented in Recommendations. Réseau Cameroonais des Associations des Personnes Vivant avec le VIH Encourage and build the capacity of people living with HIV to advocate for their rights; be actively involved (either as a volunteer or as an employee) in developing and implementing stigma and discrimination reduction projects and programmes; and to provide support and assistance to people living with HIV individually, and through support groups and other local organisations. Advocate for the inclusion of more people living with HIV in policy-making fora and in the development and drafting of relevant legislation. Build the capacity of support groups and other local organisations to challenge stigma and discrimination, and to provide adequate counselling and other support to people living with HIV, including key populations, and in particular people who inject drugs and those in detention settings. Undertake further research into the situation faced by key populations. Civil Society Advocate for the rights of all people living with HIV, including in particular people who inject drugs and those in detention settings. Promote voluntary counselling and testing as an entry point for timely diagnosis to enable treatment, care and support to start at the earliest opportunity. Provide complete and accurate information on the benefits of ART, HIV transmission, having children and preventing vertical transmission to people living with HIV and the general public. National AIDS Programme Given that there is a low level but consistent pattern of denial of the rights of people 12 Executive Summary

13 Cameroon living with HIV in health care settings, including SRH rights: o Revise pre- and in-service training curricula to enhance the capacity of health providers to provide non-judgmental and non-discriminatory services to people living with HIV, including PVT, and specifically for people who inject drugs and those in detention settings. o Review and update, if needed, protocols to ensure they are rights-based and include pre-service training for health care workers as well as in-service training refresher courses for health providers, managers and other health facility staff, as well as strengthen supervision to foster non-judgmental and non-discriminatory practices towards people living with HIV, including specifically for people who inject drugs and those in detention settings. o Scale up the provision of correct information and appropriate options for ART and the sexual and reproductive health for people living with HIV, including PVT, and specifically for people who inject drugs and those in detention settings. Support the active participation of people living with HIV in the development of laws, polices and guidelines; and in providing community-based services and support. Build the capacity of support groups and other local organisations to provide adequate counselling and other support to people living with HIV and key populations. Government Take the lead in creating a policy and legal environment that will safeguard the rights of people living with HIV, specifically addresses HIV-related stigma and discrimination, requires informed consent for HIV testing, protects confidentiality, and provides redress for breaches. Support broad-based social and community awareness raising and mobilisation as part of efforts to eradicate stigma and discrimination against people living with HIV and key populations, including through a human rights-based approach, addressing HIV-related myths. Prioritise HIV-related stigma and discrimination reduction, particularly against people living with HIV and key populations in national strategic planning, funding and programmes, including support for scaled up implementation of promising programmes. Include HIV-related stigma and discrimination indicators as part of the national AIDS response to monitor and evaluate progress over time. 13 Stigma Index

14 Stigma Index Introduction Background on HIV-related stigma and discrimination Stigma is an attribute that is deeply discrediting and results in the reduction of a person or group from a whole and usual person to a tainted, discounted one 5. Thus, the ultimate effect of stigma is the reduction of the life chances of the stigmatised through discriminatory actions 6. Discrimination involves treating someone in a different and unjust, unfair or prejudicial way, often on the basis of their actual or perceived belonging to a particular group. It consists of actions or omissions that are a result of stigma and directed towards those individuals who are stigmatised. In other words, discrimination is enacted stigma 7. However, a person may feel stigma towards another but s/he may decide not to act in a way that is unfair or discriminatory. Discrimination can occur at different levels: individual, family, community or national 8. HIV-related stigma often builds upon and reinforces other existing prejudices such as those related to gender, sexuality and race. For example, the stigma associated with HIV is often based upon the association of HIV with already marginalised and stigmatised behaviours such as sex work, drug use and same-sex and transgender sexual practices 9. HIV-related stigma affects those living with HIV and, often, those with whom they are associated, such as their partners or spouses, their children or other members of their households. Internal stigma, also referred to as felt stigma or self-stigmatisation, is a term used to describe the way a person living with HIV feels about him/herself, particularly if he/she feels a sense of shame about being HIV-positive, it is an assertion of this report that such internalised stigma is not the result of any pathology of the individual but rather the result of the stigmatising actions from others and the stigmatising environment (legal, religious, societal) that people living with HIV are confronted with in their daily lives. Such internalised stigma can lead to low self-esteem, a sense of worthlessness and/or depression, 5 Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster Inc. 6 Ibid. 7 IPPF (2008) HIV/AIDS Update Issue 13 8 UNAIDS (2005) HIV-related stigma, discrimination and human rights violations: case studies of successful programmes. UNAIDS best practice collection. Geneva 9 Ibid. 14 Introduction

15 Cameroon withdrawing from social and intimate contacts, and being less confident in accessing care, treatment and support even when it is available. Country Context With an HIV sero-prevalence rate estimated at 5.5 in the year old population in 2004 (EDSC III), Cameroon is one of Central African countries most affected by HIV. Add data on key populations, including: Legalisation of homosexuality, Article 347 of the Cameroonian Penal Code states: Whoever has sexual relations with a person of the same sex shall be punished with imprisonment, ranging from six months to five years and with a fine of between 20,000 and 200,000 CFA Francs (between and 245 Euros). The Coordinator of Paemh (Projet d assistance et d encadrement des minorités sexuelles or Project for assistance and guidance for sexual minorities), Stéphane Koche, reveals that, on authority of this article, 200 people, on average, are arbitrarily arrested and detained every year in Cameroon 10 quoted from GNP+ criminalisation scan. Use references: Institut National de la Statistique (INS) and ORC Macro (2005). Enquête Démographique et de Santé Yaoundé, Cameroon and Calverton, Maryland, United States. Direction de la Statistique et de la Comptabilité Nationales, (2007): Enquête Camerounaise des Ménage. Cameroon. Assemblée Générale des Nations Unies, vingt-sixième session extraordinaire, 2001: S-26/2. Déclaration d engagement sur le VIH/SIDA. About Réseau Cameroonais des Associations des Personnes Vivant avec le VIH (RéCAP+) The Cameroonian Network of Organisations of People Living with HIV (RéCAP+) was created in August 2000 by three organisations of people living with the HIV: AFSU (Yaounde), AFASO (Yaounde), and SUNAIDS (Douala), following a meeting of the African Network of People living with HIV (NAP+) held in Douala, Cameroon. RéCAP+ s vision is to be at the centre of the response to HIV in Cameroon. RéCAP+ seeks to lead its network in a professional and autonomous way, supporting its members and promoting the interests of all people living with HIV in the national AIDS plan. 10 The criminalisation scan section for Cameroon can be found at 15 Stigma Index

16 Stigma Index Objectives The purpose of this study was twofold, namely to: Collect and study HIV-related stigma experiences of people living with HIV in Cameroon; and Review the direct and indirect effects on individuals in order to reinforce advocacy. The specific objectives were to: Determine the causes stigma and discrimination as perceived by people living with HIV; Determine access to work and services such as accommodation, health and education; Determine the level of internal stigma; Determine the level of knowledge of rights, laws and policies by people living with HIV; Determine the level of involvement of people living with HIV in seeking redress or confronting HIV-related stigma and discrimination; and Study the opinions of PLHIV on the situation concerning maintaining confidentiality in relation to their status; Methodology The study was conducted between October 2010 and February 2011, and involved a sample of people living with HIV drawn from 5 regions: North, East, Southwest, West and Douala/ Yaoundé. Sampling: The sample was stratified according to the ethno-cultural divisions of the country and in accordance with population HIV prevalence as per the 2004 Demographic and Health Survey (EDSC) 12 with a randomly selected region included in each stratum while maintaining urban/rural stratification (Table 1) individuals were interviewed for this study. However due to spoilt and missing data questionnaires the total usable number of responses was Institut National de la Statistique (INS) and ORC Macro (2005). Enquête Démographique et de Santé Yaoundé, Cameroon and Calverton, Maryland, United States. 16 Introduction

17 Cameroon Table 1: Sample disaggregated by region Selected region Prevalence per stratum Number of PLHIV based on EDSC per stratum quota of PLHIV Sample size planned Sample size observed North East Southwest West Douala / Yaoundé Total Inclusion criteria: The sample was equally distributed among Associations, Certified Treatment Centres (CTAs) and Unités de Prise en Charge (UPECs) (Care and support units), with a maximum of 5 primary sampling units per region: i.e. 5 Associations, 5 CTAs and 5 UPECs. When the number of Associations/CTAs/UPECs in a region was over 5, randomised selection was used. When the number of urban and rural primary sampling units was unequal, additional urban settings were chosen based on generally higher HIV prevalence in urban areas. Association-based interviewees were randomly selected from lists of possible interviewees, respecting gender quotas; while at the CTAs and the UPECs, interviewee enrolment took place during visiting times until the requisite number of PLHIV had been recruited. Data collection instruments: The study used the People Living with HIV (PLHIV) Stigma Index 13 (The Index) developed by and for people living with HIV. This is an initiative of four founding partners working together since GNP+, ICW, IPPF and UNAIDS. The Index facilitates collection of information from people living with HIV to: Enable people living with HIV to document their experiences. Compare experiences across countries. Measure changes over time. Provide sound evidence for policy and programme interventions. The study tools, all which were completed during face-to-face interviews, included a structured questionnaire and informed consent form 14. Interviewers: Data collection was undertaken by nineteen people living with HIV who 13 For more information go to 14 International Planned Parenthood Federation. 2008: Guide de l utilisateur sur l index de la stigmatisation et la discrimination envers les personnes vivant avec le VIH. Royaume Uni 17 Stigma Index

18 Stigma Index received training on the survey methodology, questionnaire and its completion, fieldwork, and the role of the interviewer over two days. This training was to upgrade interviewer skills to ensure data quality. To support this, an interviewer manual was developed based on the Stigma and Discrimination Index User Guide. Interview process: At the CTAs and the UPECs, the interviewer together with the managers of the centre, identified a private place to administer the questionnaire individually and face-to-face. Due to the availability of people for interview and the length of the questionnaire, interviewers were able to complete on average 3 questionnaires per day. Furthermore, the availability and accessibility of interviewees from associations than from CTAs and UPECs, data collection was easier in the former setting. Data analysis: Five were undertaken during data analysis process Checking by the RéCAP+ office in Yaoundé, consisting of controlling the completeness of the sample and the consistency of the collected data. Data entering and editing with the Epi data software by two people. Disaggregating and tabulation of data. File control and cleaning to correct mistakes that may have occurred during data entry. Data analysis undertaken with Statistical Package for the Social Science software (SPSS). What is in this report? This report follows the content of the questionnaire and is divided into five sections: Section 1: General information about the respondent and her/his household. Section 2: Reported experiences of HIV-related stigma and discrimination; internal stigma (felt or internalised stigma); the protection of the rights of PLHIV through law, policy and/or practice; and effecting change at household and community levels in responding to stigma and discrimination. Section 3: Experience of testing, disclosure, treatment and having children. Conclusions and recommendations are then presented. 18 Introduction

19 Cameroon Section 1: Background characteristics and household composition This section presents general background information about people living with HIV involved in the study. Gender and Age Among the respondents 1284, 70 were female (n=897); while 30 were male (n=387). Table 2 shows that when disaggregated by age, the most represented age group was those aged (42, n=539); while nearly 30 (28.6, n=367) were aged and 14.3 (n=184) aged Adolescents aged and young people aged were the least represented (1.1 (n=14) and 5.1 (n=65)) with the 50 years and older group comprising 9 (n=116) of the sample. Table 2: Respondents disaggregated by age Age groups Men Women Total Numbers / Percentage years Residency Table 3 shows the regional distribution of respondents; while Figure 1 shows that nearly half of the sample (49.5, n=636) was drawn from 2 cities: Douala and Yaoundé with semi-urban and rural areas accounting for 26 (n= 335) and 24 (n=313) of the sample, respectively. 19 Stigma Index

20 Stigma Index Table 3: Respondents by gender disaggregated and region Region Men Women Total Numbers / Percentage Douala/Yaoundé Extreme North East West South-West Figure 1: Respondents disaggregated by residency Relationship status Table 4 shows that over half of respondents (57.6, n=739) lived (cohabited) with a spouse or partner, including (70.3 of male (n= 271) and 52.1 of female respondents (n=467); 21.1 (n=271) had a spouse or partner or were in a relationship but did not live with her/him; while 42.4 (n=545) were single (unmarried, divorced or widowed). 20 Section 1

21 Cameroon Table 4: Respondents disaggregated by relationship status Relationship status Men Women Total Numbers Married or cohabiting and partner is currently living in household Married or cohabiting but partner is temporarily living/working away from the household In a relationship but not living together Single Divorced/separated Widow/widower Cohabiting Not cohabiting Of the 738 cohabitating respondents, Table 5 shows that over one quarter of respondents (27.9, n=206) had been cohabiting for 2-4 years, and over one fifth had been cohabitating for 5-9 years (20.9, n=154) with nearly one fifth for 15 or more years (19.4, n=143). Table 5: Cohabitating respondents, disaggregated by number of years cohabiting Number of years cohabiting Men Women Total Numbers year years years years years Stigma Index

22 Stigma Index Sexual activity Nearly three quarters of respondents (74.7, n=959) report that they were currently sexually active, including 89.1 of male ((n=345) and 68.5 of female (n=614) respondents. Length of time living with HIV Table 6 outlines the length of time respondents had been living with HIV, disaggregated by gender. The largest percentage of respondents, 42.6 (n=547) with little gender-based difference, had been living with HIV for 2-4 years. Further, 30.5 (n=392) with little genderbased difference had been living with HIV for 5-9 years; while nearly one in five (19.5, n=250) had been living with HIV for one year or less, including 23.3 of male (n=90) and 17.9 of female (n=160) respondents. Barely 1 of respondents (n=13) had lived with HIV for 15 years or more with only 6.4 (n=82) living with HIV for years. Table 6: Length of time living with HIV Numbers Male Female Total year years years years years Key populations In terms of key populations; Table 7 shows that the largest group of respondents was those, over 80 (81.5, n=1047), not identifying themselves with any of these groups (n=139) identified as a member of an indigenous group; 3.4 (n=44) as internally displaced person, 2.1 (n=8) as men who have sex with men, 1.9 as sex workers (n=24), and less than 1 identified as lesbian, person who uses drugs, refugee or asylum seeker, or migrant worker. 22 Section 1

23 Cameroon Table 7: Respondents belonging to key populations, disaggregated by gender Categories Men Women Total Total of sample group Men who have sex with men Lesbian Transgender Sex worker Injecting drug user Refugee or asylum seeker Internally displaced person Member of an indigenous group (from the same tribe) Migrant worker (a moving worker) Prisoner I don t belong to, and have not in the past belonged to, any of these categories In summary, a minority of respondents declared (or acknowledged) they belonged to key populations. The under-representation of key populations in this survey means that further studies concerning the situation faced by key populations need to be undertaken. Education Table 8 shows that significant percentages of respondents had low levels of education with over 40 reporting no formal education or only primary level education (7.8 (n=100) and (36.6; n=470), respectively); though nearly half (48.8; n=627) did report secondary school level education. Only 6.8 (n=49) of respondents reporting technical college or university level. 23 Stigma Index

24 Stigma Index Table 8: Respondents disaggregated by education level Educational level Men Women Total Numbers No formal education Primary Secondary Tertiary Employment status Table 9 shows that just under one third of respondents reported being unemployed (32.4, n=416), 20.3 (n=259) are employed either part- or full-time with an additional 17.7 (n=227) describing themselves as self-employed, and over 30 (30.5, n=391) undertaking casual work. Furthermore, Table 9 shows that unemployment rate among female respondents was over twice that of male respondents (38.6, n=346 compared to 18.1, n=70), and more men among full time and part time employees (19.6 (n=76) and 9.3 (n=36)) than women (10.1 (n=90) and 6.5 (n=58), and among the self-employed (23.3 (n=90) and 15.3 (n=137)). Table 9: Respondents current employment status Categories Men Women Total In full-time employment (as an employee) In part-time employment (as an employee) Working full-time but not as an employee (self-employed) Doing casual or part-time work (selfemployed) Unemployed and not working at all Total of sample Section 1

25 Cameroon Number of persons who live in respondents households Table 10 shows that on average, 5 people lived together per household with over one quarter of respondents (26.1, n=334) indicating that 7 or more persons lived in their household. Over 75 of respondents (75.5, n=970) reported at least one person aged 0-14 years living in the household; while one quarter reported at least one person aged 50 years and above (n=321). Over one in five respondents (22.2, n=285) reported having children orphaned due to AIDS living in their household. Table 10: Respondents households, disaggregated by age, number of people and children orphaned due to AIDS Characteristics Number Number of people in households At least one person aged 0-14 years At least one person aged years At least one person aged years At least one person aged years At least one person aged years At least one person aged years At least one person aged 50 years and above Total number of people in households and above Average number Median number Number of children orphaned due to AIDS living in the households and above ND Total Stigma Index

26 Stigma Index Food security and insecurity Table 11 shows that over 60 of respondents (62.4, n=802) reported members of their families experiencing shortage of food in the last month with only 36.9 (n=474) reporting no food shortages, with women reporting more food shortages than men. Table 11: Number of days in the last month in which a household member has not had enough food to eat Number of days in which a member of the household has not had enough food to eat Number and above ND Total Economic status Of the 1244 respondents who provided information on their income (Table 12): The average income per day was US$ 3.12 with a range of US$ 0.1 to US$ 5.5 The average income for male respondents was US$ 3.8 compared to US$ 2.8 for female respondents. 16 (n=200) were living on less than US$ 1 per day with the percent of female respondents reporting living on less than US$ 1 per day twice that of for male respondents (19.1 (n=165) compared to 9.2 (n=35). According to the poverty line established by Enquête Camerounaise Auprès des Ménages III (ECAM), 2007 (Cameroonian Household Survey) 2007 of CFAF per day; 33 (n=411) of respondents live under the poverty line with more women than men (37, n=319 compared to 24; n=92). Note that this percent is less than the national level of 39.9, according to ECAM III. 26 Section 1

27 Cameroon Table 12: Average income per day Average income per day US$ Men Women Total Average US$ Standard deviation People living with income under... # # # one dollar per day the poverty line Total of responses Stigma Index

28 Stigma Index Section 2: Experience of stigma and discrimination This section comprises five sub-sections: experiences of HIV-related stigma and discrimination; access to work and health and education services; internalised stigma; the protection of the rights of people living with HIV through the law, policy or practice; and effecting change. 2.1 Experience of HIV-related stigma and discrimination Respondents were asked about their experiences of stigma and discrimination in the previous 12 months (Table 13). Significant percentages of respondents reported having been verbally insulted/harassed/threatened (34.9, n=448, of whom 60.9 (n=273) believe their HIV status to be reason and a further 15.4 (n=69) believing that both HIV status and other reasons were the cause. In addition, lower percentages of respondents reported exclusion from social gatherings (e.g. meetings and events) (11.4, n=146); family activities (12.9, n=165), and religious activities (4.5, n=58) at least once in the last 12 months. Table 13: Respondents experience of and attributed reasons for stigma and discrimination in the previous 12 months, disaggregated by gender Characteristics Men Women Total Excluded from social activities or gatherings Because of your HIV status For (an)other reason(s) Both because of your HIV status and other reason(s) Not sure why Total number * of total respondents Excluded from religious activities or places of worship Because of your HIV status For (an)other reason(s) Section 2

29 Cameroon Characteristics Men Women Total Both because of your HIV status and other reason(s) Not sure why Total number * of total respondents Excluded from family activities Because of your HIV status For (an)other reason(s) Both because of your HIV status and other reason(s) Not sure why Total number * of total respondents Being gossiped about Because of your HIV status For (an)other reason(s) Both because of your HIV status and other reason(s) Not sure why Total number * of total respondents Verbally insulted, harassed and/or threatened Because of your HIV status For (an)other reason(s) Both because of your HIV status and other reason(s) Not sure why Total number * of total respondents Physically harassed and/or threatened Because of your HIV status For (an)other reason(s) Stigma Index

30 Stigma Index Characteristics Men Women Total Both because of your HIV status and other reason(s) Not sure why Total number * of total respondents Physically assaulted Because of your HIV status For (an)other reason(s) Both because of your HIV status and other reason(s) Not sure why Total number * of total respondents * Numbers of people who experienced at least once one of the abovementioned forms of S&D Table 14 show that, overall, 68.7 of respondents (n=882) reported having experienced at least one of the forms of stigma and discrimination in the last 12 months, including 70.1 (n=629) of female and 65.4 (n=253) of male respondents. Table 14: Respondents experience of stigma and discrimination in the last 12 months, disaggregated by gender Has experienced stigma and/or discrimination at least once Men Women Total Yes No Total Being gossiped about The form of stigma most reported by respondents was being gossiped about with Table 15 showing that over half of respondents (51.4, n=660) reported being gossiped about with female respondents reporting higher incidence than male respondents (53.5 (n=480) compared to 46.5 (n=180) and over a quarter of respondents reporting more than one instance (a few times 27.1, n=348, and often 19.1, n=245). Table 15 shows that 80.9 (n=532) indicated that it occurred, in whole or in part, because of their HIV-positive status; 30 Section 2

31 Cameroon while 13.6 (n=89) indicated that it happened because of other reasons; and 5.5 (n=36) do not know the reasons. Table 15: Respondents gossiped about in the previous 12 months, disaggregated by gender Being gossiped about Men Women Total Never Once A few times Often At least once Verbally insulted, harassed and/or threatened The second most reported form of stigma was being verbally insulted, harassed and/or threatened (34.9, n= 448) (Table 16) with female respondents reporting higher incidence than male respondents (36.9 (n=331) compared to 30.2 (n=117)). Table 16 shows that of the 448 respondents reporting being verbally insulted, harassed and/or threatened, 60.9 (n=273) believe their HIV status to be reason and a further 15.4 (n=69) believe that both their HIV status and other reasons to be the cause, in total over 75. Table 16: Respondents verbally insulted, harassed and/or threatened in the previous 12 months, disaggregated by gender Verbally insulted, harassed and/or threatened Men Women Total Never Once A few times Often At least once Physical harassment and threats of violence Table 17 shows that in the last 12 months, 14.9 of respondents (n=191) reported being physically harassed and/or threatened at least once. Furthermore, twice the incidence among female respondents (17.3, n=155) compared to 9.3 of male respondents (n=36) was reported. Table 17: Respondents physically harassed and/or threatened in the previous 12 months, 31 Stigma Index