The Socioeconomic Impact of HIV at the Individual and Household Levels in Indonesia A Study in Seven Provinces

The Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) have widespread socioeconomic effects which are felt at the individual, household, organizational, community and national levels. At the household level, family relations undergo the strain of a reduced household income since the primary breadwinner oftentimes succumbs to the illness, and as a greater portion of the available income is diverted from key expenses like childrens education to cope with rising medical costs. In some extreme cases, children are even abandoned under mounting socioeconomic pressures. At the national level, HIV and AIDS, if not controlled properly, could increase the poverty rate and complicate global efforts to achieve the Millennium Development Goals (MDGs). A strategy and action plan to control AIDS is currently being prepared to prevent and reduce the risk of HIV infection, to increase the quality of life of people living with HIV (PLHIV) and to mitigate the social and economic impact of HIV on individuals, families and communities, so that all people can be productive and valuable in development efforts. Data on the socioeconomic impact of HIV as faced by PLHIV and their families in Indonesia is not yet adequate. In order to address this gap, the Central Bureau of Statistics (BPS), National AIDS Commission (NAC), the Network of People Infected with HIV in Indonesia (JOTHI), UNDP, ILO, UNV and UNAIDS have come together to conduct an impact study on HIV in relation to the socioeconomic wellbeing of households in seven provinces in Indonesia, namely DKI Jakarta, West Java, East Java, Bali, West Nusa Tenggara, East Nusa Tenggara and Papua. This research not only seeks to describe the impact of HIV at the socioeconomic levels within these households, it also seeks to identify possible mitigation efforts, and builds upon similar research conducted in other Asian countries such as India, China, Cambodia and Vietnam. One limitation of this research is the fact that there was no sampling frame for PLHIV. This research used a quota sampling method. Readers must therefore be careful when interpreting the results of this study.

Foreword

It is expected that the results of this study shall inform stakeholders working on efforts to control HIV and AIDS, particularly in relation to increasing access and socioeconomic support to children and families impacted by HIV. I would like to congratulate the research team and all people involved in this study for their valuable contribution to the body of knowledge on HIV and AIDS.
National AIDS Commission Secretary,

Dr. Nafsiah Mboi, SpA, MPH

Table of Contents
Foreword ...................................................................................................................................................... 2 Table of Contents .......................................................................................................................................... 3 List of Figures ................................................................................................................................................ 5 List of Tables ................................................................................................................................................. 6 Executive Summary....................................................................................................................................... 8 1. Introduction .........................................................................................................................................13 1.1. Background........................................................................................................................................... 13 1.2. Objectives ............................................................................................................................................. 14 2. Methodology ........................................................................................................................................16 2.1. Study Methods ..................................................................................................................................... 16 2.2. Study Location ...................................................................................................................................... 17 2.3. Sample Design ...................................................................................................................................... 18 2.4. Sample Selection Procedures ............................................................................................................... 19 2.5. Analysis Method ................................................................................................................................... 19 2.6. Profile of Respondents ......................................................................................................................... 20 2.6.1. Household Structure ............................................................................................................................ 20 2.6.2. Economic Status ................................................................................................................................... 22 2.6.3. Basic Amenities Status ......................................................................................................................... 25 2.7. Profile of PLHIV Respondents............................................................................................................... 26 2.7.1. Age, Sex and Education Level ............................................................................................................... 27 2.7.2. Marital and Employment Status .......................................................................................................... 29 2.7.3. Year of HIV Diagnosis ........................................................................................................................... 30 3. The Impact of HIV in terms of Employment and Income .......................................................................32 3.1. Work Force Participation ..................................................................................................................... 32 3.2. Household Income ............................................................................................................................... 34 3.3. Changes in, or Losses in, Employment and Income ............................................................................. 34 4. The Impact of HIV on Household Expenditure, Savings, and Assets .......................................................38 4.1. Household Expenditure ........................................................................................................................ 38 4.2. Savings and Assets................................................................................................................................ 41 5. The Impact of HIV on Childrens Education ...........................................................................................43 5.1. Educational Attainment ....................................................................................................................... 43 5.2. Levels of School Participation .............................................................................................................. 44 5.2.1. Dropout Levels ..................................................................................................................................... 45 5.2.2. Attendance Levels and Other Schooling Problems .............................................................................. 46 5.3. School Status and Education Costs ...................................................................................................... 47 6. The Impact of HIV on Health .................................................................................................................50 6.1. Morbidity Levels ................................................................................................................................... 50 6.1.1. Levels of Morbidity of Household Members ........................................................................................ 50 6.1.2. Morbidity Rates for PLHIV .................................................................................................................... 52 6.2. Health Facilities and the Cost of Treatment......................................................................................... 55

6.3. VCT, CD4 Testing, and ARV ................................................................................................................... 56 6.4. Mortality Rates ..................................................................................................................................... 57 7. Stigma, Discrimination, and Knowledge of HIV .....................................................................................59 7.1. Stigma and Discrimination ................................................................................................................... 59 7.1.1. Stigma within the Household ............................................................................................................... 59 7.1.2. Stigma and Discrimination in Neighborhoods and Schools ................................................................. 62 7.1.3. Stigma and Discrimination in Health Care Facilities ............................................................................. 64 7.2. Knowledge and Understanding of HIV ................................................................................................. 66 8. Women and HIV ...................................................................................................................................67 8.1. Womens Traditional Role as Carers .................................................................................................... 68 8.2. Pregnancy and Childbirth for Female PLHIV ........................................................................................ 68 8.3. Female PLHIV and their Partners ......................................................................................................... 69 9. Coping Mechanisms & External Support ...............................................................................................71 9.1. Coping Mechanisms ............................................................................................................................. 71 9.2. Migration .............................................................................................................................................. 73 9.3. External Support................................................................................................................................... 74 9.3.1. Sources and Types of Support .............................................................................................................. 74 9.3.2. Benefits and Need for Support............................................................................................................. 77 10. Conclusions & Recommendations .........................................................................................................80 10.1. Conclusions........................................................................................................................................... 80 10.2. Recommendations ............................................................................................................................... 81 Attachments ................................................................................................................................................84 Abbreviation ..................................................................................................................................................... 84 Sampling Procedures ........................................................................................................................................ 86 A. Sampling of PLHIV or HIV households .................................................................................................. 86 B. C. Sampling of Non-HIV households......................................................................................................... 86 Selecting Respondents for the In-depth Study .................................................................................... 87

SDGK09-M Questioner ..................................................................................................................................... 98

List of Figures
Figure 1. Distribution of Households according to Household Structure ...............................................................................21 Figure 2. Distribution of Sample Households by Household Income Categories ..................................................................23 Figure 3. Distribution of Sample Households by Household Expenditure Categories .........................................................24 Figure 4. Distribution of PLHIV Respondents Based on Type of Transmission (%) ............................................................27 Figure 5. Age and Sex of PLHIV Respondents (%) ........................................................................................................................28 Figure 6. Highest Education Levels Obtained by ...........................................................................................................................28 Figure 7. Marital Status of PLHIV Respondents Aged 18 Years or Older (%) ........................................................................29 Figure 8. Occupation of PLHIV Age 18 Years Old or older ..........................................................................................................30 Figure 9. Number of PLHIV Respondents According to Year of HIV Diagnosis .....................................................................30 Figure 10. Primary Activity Distribution Patterns of Respondents Aged 15 Years or Older (%) ..................................... 33 Figure 11. Loss of Employment Patterns for Respondents Aged 18 Years or Older (%) ....................................................35 Figure 12. Average Monthly Household Income and Expenditure per Capita (IDR) According to Household Classification ......................................................................................................................................................................39 Figure 13. Distribution of Assets, Savings, and Debts in Sample Households........................................................................42 Figure 14. The Number of HIV households that Experienced a Change in Income/Expenditure Following HIV Diagnosis .............................................................................................................................................................................42 Figure 15. School Participation Rates of Respondents Aged 5-18 Years According to HIV or Non-HIV Status (%)..... 45 Figure 16. Reasons for School Relocation by Respondents (%) ...............................................................................................47 Figure 17. Average and Proportion of Educational Expenses (Rupiah) According to Household Classification ......... 49 Figure 18. Respondents Treated as Outpatients over a Period of a Month and Hospitalized over a Period of a Year (%) ........................................................................................................................................................................................51 Figure 19. Distribution of Illness over the Period of One Month by HIV or Non-HIV Status of Respondent (%)......... 52 Figure 20. PLHIV according to Illness Over a Period of One Month and OIs Symptoms Prior to HIV Test (%) ............. 53 Figure 21. Respondents Experiencing Health Problems Over the Period of One Month By Type of Health Facilities Accessed (%) ......................................................................................................................................................................................... 55 Figure 22. Mortality Rate over the Last Five Years .................................................................................................................................... 57 Figure 23. Rate of Disclosure of HIV Status to Family (%) ...................................................................................................................... 60 Figure 24. The Percentage of Households According to the Initial Reactions of Household Heads/Partners When Informed of A Household Members HIV Status .................................................................................................................... 60 Figure 25. The Percentage of Households According to The Reaction of Household Heads/Partners Regarding a Household Members HIV Status at the Time of Study ....................................................................................................... 61 Figure 26. The Percentage of HIV households According to Whether Neighbors Know there is a PLHIV in the Household ............................................................................................................................................................................................... 63 Figure 27. The Number of Households That Experienced Discrimination from Other Patients in Health Care Facilities ...................................................................................................................................................................................................................... 65 Figure 28. Married Female PLHIV According to their Pregnancy and Childbirth History after HIV-diagnosis .............. 69 Figure 29. Married Female PLHIV according to their Relationship with their Husband (%) ................................................. 70 Figure 30. HIV Households Affected by Expenditure and Income Related Problems according to Monthly per Capita Income Group and Sex of Head of Household ......................................................................................................................... 72 Figure 31. HIV Households Who Have Migrated According to Sex of Household Head (%) ................................................... 74 Figure 32. HIV Households who Have Actively Sought or Received Support According to Monthly per Capita Income Quintile ..................................................................................................................................................................................................... 75 Figure 33. HIV Households According to Sources of Support and Support Types (%) .............................................................. 77 Figure 34. HIV Households According to Type of Support Needed and Sex of Head of Households (%) .......................... 79

List of Tables
Table 1. Study Locations ......................................................................................................................................................................................... 17 Table 2. Allocation of Sample Households for the SDGK09 per Province ........................................................................................ 18 Table 3. Percentage of Respondent by Sex, Age, Type of Employment and Level of Education for Head of Households ...................................................................................................................................................................................................................... 22 Table 4. Sample Households According to Ownership of Assets and Other Consumer Durables (%) ................................ 25 Table 5. Basic Amenities by Household Classification (%) ..................................................................................................................... 26 Table 6. The Employment Status of Household Members (%) ............................................................................................................. 33 Table 7. Sources of Income and Average Monthly Income per-Capita .............................................................................................. 34 Table 8. Reasons for Withdrawal from Work by PLHIV (%).................................................................................................................. 35 Table 9. PLHIV Respondents According to their Employment Status and Type of Employment Before and After HIV Diagnosis (%) ........................................................................................................................................................................................ 36 Table 10. The Average Number of Workdays and Income Lost Due to Leaves of Absence From Work ............................ 37 Table 11. Average Monthly Expenditure Per Capita (IDR) According to the Type of Expenditure and Household Classification .......................................................................................................................................................................................... 40 Table 12. Average Monthly Expenditure and Income Per Capita (IDR) According to Quintiles and Household Classification .......................................................................................................................................................................................... 41 Table 13. Respondents Aged 18 Years or Older According to Educational Attainment (%) .................................................. 43 Table 14. Percentage of Respondents Currently Attending School..................................................................................................... 44 Table 15. Number of Respondents Who Dropped Out of School According to Reason and Household Classification 46 Table 16. Respondents Currently Enrolled in School Who Often Skip Class, Have Previously Been Held Back a Class and Have Relocated to Other Schools According to Sex and Household Classification ....................................... 46 Table 17. Percentage of Household According Capacity, Financing and Ideal Education Level and Household Classification .......................................................................................................................................................................................... 48 Table 18. Respondents Who Had Experienced Health Problems Over The Past Month (%) ................................................. 51 Table 19. Morbidity Rate of PLHIV Over a Period of One Month According to Stage of HIV Infection and Length of Time Since HIV Diagnosis (%) ....................................................................................................................................................... 54 Table 20. Average Outpatient Expenditure According to Type of Costs .......................................................................................... 56 Table 21. The Percentage of PLHIV Who Received VCT, CD4 Testing, and ARV Treatment ................................................... 56 Table 22. Household Opinions about the Most Significant Impact of HIV and AIDS (%) ......................................................... 62 Table 23. The Percentage of HIV households that Experienced Discrimination within the Neighborhood According to the Gender of the Head of Household ................................................................................................................................... 64 Table 24. PLHIV Who Experienced Discrimination in Health Care Facilities according to the Type of Discrimination Encountered and their Gender (%) ............................................................................................................................................. 65 Table 25. Knowledge Regarding HIV Transmission Modes by Head of Households According to Household Classification (%)................................................................................................................................................................................. 66 Table 26. Efforts Taken by Households to find Solutions to Financial Problems Identified by Income Quintile and Sex of Head of Household ................................................................................................................................................................ 73 Table 27. Sources, Types and Support Offered to HIV Households according to Monthly per Capita Income Quintiles ...................................................................................................................................................................................................................... 76 Table 28. Households Receiving Assistance Based on Support Type and Benefits (%) .......................................................... 78

All the data and tables included within this report, and the resultant analysis, have been compiled by a team from the Central Bureau of Statistics (Tono Iriantono, Edi Wayono, Tanno Kamila Helaw, Akhsan Nain, Theresia Parwati & Maman Rahmawan) and the UNDP Regional Center (Dr. Basanta Pradhan). Inputs were also received from the National AIDS Commission (Suriadi Gunawan), the National Network of People Infected by HIV/JOTHI (Abdullah Denovan), ILO (Tauvik Muhamad & Early Dewi Nuriana), UNV (Stefania Sini), UNAIDS (Nancy Fee & Krittayawan Boonto), and the UNDP team in Indonesia. UNDP Indonesia Country Office: Menara Thamrin 8th Floor Jl, MH Thamrin Kav.3 Jakarta, Indonesia 10250 Phone: +62.21.3141308 Fax: +662.21.3145251 www.undp.or.id

This report was prepared by Aang Sutrisna with valuable inputs from Wynandin Imawan, Teguh Pramono, G. Pramod Kumar, Vera Hakim, and Ari Y. Pratama.

Executive Summary
Introduction
The Human Immunodeficiency Virus (HIV) and the Acquired Immune Deficiency Syndrome (AIDS) have become a serious problem for developing and developed countries alike in recent years. Since the early decades of this century, the number of people infected with HIV in Indonesia has increased significantly. Compared with other countries in Asia however, the percentage of people with HIV in Indonesia in 2009 is still relatively low at about 0.15 percent of those aged 15-49 years, or approximately 186,000 Indonesians. 1

Nonetheless, there are rising numbers of People living with HIV (PLHIV) in Indonesia, and the rising prevalence of HIV and AIDS has also resulted in a concurrent socioeconomic impact at the householdlevel. Data limitations however have seriously hindered various parties from designing more effective programs aimed at mitigating the impact of HIV. In order to address this problem, in 2009 the Central Bureau of Statistics (BPS) in cooperation with UNDP, ILO, UNV and JOTHI (Network of People Infected with HIV in Indonesia) undertook this study on the impact of HIV on the socioeconomic wellbeing of individuals and households

Methodology

Considering the unavailability of reliable data and a lack of information on the distribution of people with HIV, quota sampling was chosen as the most appropriate methodological approach for this research. The sample size for each province however varies. The sample size for each province has been taken into account when analyzing the reliability of conclusions stemming from the data.

Households which have been chosen as observation units fall into two categories, namely households containing at least one Person Living with HIV (the target group) and households without PLHIV (the control group). Households with PLHIV in this study are defined as households in which at least one member is living with HIV. The unit of observation, apart from the aforementioned household, also includes individuals who are living with HIV. This study examines data collected from 1,106 PLHIV households in comparison to 996 non-HIV or control households. In order to determine the socioeconomic impact of HIV and AIDS at the household level, this study was conducted in 13 cities located in 7 provinces with different levels of HIV prevalence, namely DKI Jakarta, West Java, East Java, Bali, West Nusa Tenggara, East Nusa Tenggara and Papua.

Respondent Characteristics
Households without PLHIV were selected based on similar physical characteristics to that of the HIV or target households, including: the condition of the house or family residence; its level of access to basic
1

Report on the Estimation of the Indonesian Adult Population Vunerable to HIV Infection, Ministry of Health, 2009 (Laporan EWstimasi Populasi Dewasa Rawan Terinfeksi HIV)

Surveys of both household groups identified the following socioeconomic data. First, the percentage of family heads of HIV households who are divorced (26%) is much higher compared to non-HIV households (14%). Unemployment levels are also higher for family heads in HIV households (27%) compared to non-HIV households (16%). The proportion of women who become the head of HIV households (25%) is also much higher in the target group in comparison to the control group or non-HIV households (15%).

services like water, electricity and gas; the size of the family; the age of its members, and; their educational levels.

Most of the male PLHIV respondents had an injecting drug users (IDUs) background (73%) while most female PLHIV respondents (48%) had contracted HIV from their husbands. Of the total female PLHIV sampled, 37% were divorced, compared to 8% of the total male PLHIV respondents. Most of PLHIV respondents knew they tested positive for HIV in the last five years.

The average total monthly household expenditure per capita for HIV households (IDR 958,510) is larger than that of non-HIV households (Rp 780,968). Average incomes in HIV households are higher than that of non-HIV households (IDR 917,544 compared to IDR 844,134 respectfully), but the percentage of HIV households which are under the poverty line (7.9%) was higher than that of non-HIV households (6.5%). It should be noted, that the slightly higher income rates of HIV households is largely attributable to external government and non-government social support and assistance, whilst their higher poverty rates is also attributable to higher expenditure levels in the target group compared to the control group.

Employment and Income

The percentage of employed male members of non-HIV households (47%) was significantly higher than males in HIV households (37%), whereas the percentage of employed female PLHIV in HIV households is a little bit higher than females within non-HIV households. The percentage of PLHIV respondents who stopped working after succumbing to HIV was 52 percent for male PLHIV and 34 percent for female PLHIV, which is much higher than non-PLHIV respondents from non-HIV as well as from HIV households. Reasons cited for leaving work are often unclear, but 7 percent of respondents said they were fired from their jobs due to their HIV status.

Expenditure and Savings

Over a period of one month, 21 percent of HIV household members sampled lost workdays due to illness and/or caring for the sick. This is much higher than in non-HIV households, in which only 5 percent of control household members lost workdays due to similar reasons. The average total working days lost due to illness and/or caring for the sick in HIV households overall is 5 times higher compared to that of non-HIV households. This translates into substantial economic losses, with HIV households losing wages amounting to IDR 233,322 per day, in comparison to IDR 164,457 per day in non-HIV households.

The average monthly income per capita in HIV households is higher than that of non-HIV households. As explained above, this is largely due to external support and assistance, with such contributions reaching approximately 14 percent of total monthly income per capita in the target households.

The most striking difference in monthly household expenditure per capita between HIV households and non-HIV households can be ascertainied in relation to medical care expenses. A total of 11 percent of HIV households monthly expenditure was spent on medical care. This figure is far greater than in non-HIV households which only spend 3 percent of their total expenditure on medical care. Compared to the control group, this means the target group spend nearly four times or 400 percent more on medical care. A total of 74 percent of HIV households have additional expenditures which resulted in significant income losses because one of their household members was living with HIV. Sixty four percent of them used their savings in order to cope with this. Another reported coping mechanism designed to overcome associated problems related to increased expenditures or reduced income due to HIV and AIDS was through borrowing. Of the total target group surveyed, 47 percent reported that they had to do this. As a result, more households with PLHIV were in debt compared to households without PLHIV.

Education
Differences in school participation rates between the target and control groups emerged at the junior high school level, in children aged 13-15 years, whereas the percentage of members from HIV households who were still in school (87%) was lower compared to members from non-HIV households (96%). The gap in school participation rates between the two groups widened further at higher levels of education. The difference in school participation rates between the two households at the junior high school level was 10 percent. This increased to 19 percent at the senior high school level and to 50 percent at the higher education level, meaning university or an equivalent level of education. It can be concluded that members of non-HIV households tend to have higher education levels than members of HIV households. In addition, of the total PLHIV sampled who were of school age, nearly 50 percent reported that they were no longer attending school. Educational expenditure for children in HIV households was far smaller than in non-HIV households. In nominal terms, the average expenditure for monthly education per capita in HIV households was only 43 percent of the total monthly expenditure per capita in non-HIV households. In terms of total expenditure, HIV households only allocated one third of the cost allocated for education in non HIV households.

Health
Significant differences in morbidity rates between Households with PLHIV and Households with no PLHIV can be seen in those aged 20-49 years, with HIV household members in this age bracket experiencing significantly higher levels of health problems over a one month period compared to that of non-HIV households, with a total morbidity rate of 32 percent for HIV households compared to 25 percent for non-HIV households.

The most popular outpatient care health facility for the majority of HIV household members sampled during this timeframe was a hospital (41%), whereas most non-HIV household members sought outpatient care from primary health care centres (32%). Since hospitals are more expensive in comparison to primary health care centres, the total household expenditures for the target group was increased, with the total cost of outpatient care for HIV households as much as 5 times bigger than non-HIV households.

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The percentage of PLHIV who were undertaking antiretroviral therapy (ART) was as high as 54 percent, of which approximately 27 percent were male PLHIV and 18 percent were female PLHIV. Of those sampled, 24 percent claimed to have stopped taking antiretroviral drugs (ARVs) at one time due to a myriad of reasons.

Stigma and Discrimination

In general, 27 percent of households do not know that one of their members had been infected with HIV. This suggests that there are high proportion of PLHIV who are still afraid or do not feel ready to reveal their HIV status. This is despite the fact, that only 12 percent of the total HIV households surveyed reported feeling or reacting negatively upon discovering that one of their household members were infected with HIV.

Most HIV households have reported that they have hidden the HIV status of the aforementioned family members from their neighbors, with only 16 percent reporting that they believed their neighbors were knowledgeable about the HIV status of the PLHIV family member. In total, 36 percent claimed that they experienced discrimination from their neighbors as a result of knowledge about this HIV status. According to PLHIV respondents, they faced the highest discrimination against them during visits to health facilities. As much as 53 percent of PLHIV claimed that they had experienced discrimination at the hand of health workers or fellow patients during such visits.

Women and HIV

Thirty percent of PLHIV respondents were women, with a further 40 percent of this figure becoming pregnant after testing positive for HIV. During this study, 6 percent of female PLHIV respondents said they were currently pregnant. Most child birth deliveries followed standard procedures, with the result that 18 percent of their children became HIV positive. A total of 80 percent of female PLHIV respondents were currently, or were previously, married. Fifty-six percent of these women said that their husbands were also infected with HIV. Most of these women said that they knew their husbands were infected with HIV earlier than they did themselves. This indicates that 46 percent of women living with HIV contracted HIV from their husbands and almost all of them still live with their husbands.

Support

Most PLHIV respondents were attended to by other family members when experiencing health problems. The caretaker in most circumstances was female, with seventy five percent of all caretakers sampled women.

A total of 40 percent of HIV households have yet to receive assistance from a third party since one of their members became infected with HIV. Most of the households living with HIV who have received such assistance, only received access to medication. The most desired support by HIV households was financial aid or employment, with 48 percent of PLHIV of a productive age without employment and with access only to a limited income.
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Recommendations
The findings of this study clearly demonstrate the need to prioritise impact mitigation steps as part of the national and provincial AIDS strategies. Given the clear impact at the household levels, they should target households rather than individuals. The enormous financial burden endured due to escalating medical costs and associated expenses, a need for socioeconomic and legal empowerment for PLHIV and their families, the need to implement actions for overcoming stigma and discrimination, the need to decentralise services, and so on, should also be priorities in AIDS plans. The evidence from the study also clearly show that HIV-sensitive social protection can improve the economic situation of PLHIV and strengthen prevention and treatment efforts.

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1.

Introduction

1.1. Background
In the last few years, HIV has become a critical issue in developing and developed countries alike. It was estimated by UNAIDS that there were 33 million people living with HIV in the world in 2009. 2 Most of the infected individuals are in the economically productive age group. This has socioeconomic ramifications at the household, national and global levels, in terms of the Gross Domestic Product (GDP), workforce structures, productivity levels and life expectancy rates.

The recent report by the Commission on AIDS in Asia also underscores the importance of recognizing the severity of HIV driven socioeconomic costs at the household level and the importance of formulating
2 3

Although an increase in HIV prevalence rates does not have a significant socioeconomic impact at the macro or national levels in Indonesia (due to the low prevalence rate, and the large Indonesian population). However, the effects of HIV are severe and significant at the micro or household level, particularly when one or more family members are infected with HIV. 4 People living with HIV (PLHIV) and their families tend to be acutely burdened by several interrelated problems including: chronic illnesses; loss of employment and income; rising medical expenses; depletion of savings and other resources; psychological stress; discrimination, and; social exclusion. Prevaling social norms and behaviours towards PLHIV may also arise due to the attitudes of the family members with one feeding the other.

The HIV epidemic in Indonesia is continuing to expand. In 2009. the estimated number of PLHV was still relatively low in Indonesia, at 0.15 percent of 15-49 year olds, or a total of about 186,000 people. 3 The HIV epidemic continues to be focused on Key Populations, including MSM, transgenders, sex workers, the clients of sex workers, and their partners, and injecting drug users and their partners. The HIV epidemic in Indonesia was originally focus on injecting drug use (IDU), but the majority of new infections are now coming from sexual transmission although IDUs will continue to have a high rate of HIV prevalence. A dufferent pattern is seen in Tanah Papua provinces, where there is a generalized epidemic. And an increasing number of women are becoming infected with HIV in Indonesia.

UNAIDS has reported that the global HIV epidemic is changing: the total number of new infections is reducing; more people are on treatment; and therefore living longer. In 2009, there were an estimated 2.6 million new HIV infections. And there has been an estimated 20% reduction in new HIV infections since the peak of the epidemic in 1999.

Report on the Global AIDS Epidemic, UNAIDS, 2010

Report on the Estimation of the Indonesian Adult Population Vunerable to HIV Infection, Ministry of Health, 2009 (Laporan EWstimasi Populasi Dewasa Rawan Terinfeksi HIV) Redefining AIDS in Asia: Crafting an Effective Response, Report of the Commission on AIDS in AIDS, Oxford, 2006.

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In order to address some of the data gaps identified above, the National Bureau of Statistics (Badan Pusat Statistik - BPS) conducted this study in 2009, in cooperation with UNDP, ILO, UNV and JOTHI (Jaringan Orang Terinfeksi HIV Indonesia/the national network of people living with HIV). The objective of the study was to document the socioeconomic impact of HIV at the household-level in Indonesia and to identify control approaches, by building on, and expanding on, similar studies conducted in other Asian countries such as India (2006), China (2007) and Cambodia (2008). The overall study was conducted in seven provinces in Indonesia, namely DKI Jakarta, West Java, East Java, Bali, West Nusa Tenggara, East Nusa Tenggara and Papua. Among the chosen provinces, West Nusa Tenggara and East Nusa Tenggara represented provinces with low HIV prevalence, while the other five provinces represented provinces with higher HIV prevalence. The combination of data from the two prevalence groups is expected to produce data which is representative of the socioeconomic effects of HIV and AIDS in Indonesia.

What remains unclear at the moment is whether the socioeconomic costs of HIV to Indonesian PLHIV and HIV households is equally felt at the national level. In Indonesia, lack of access to reliable data, means that such an analysis cannot be undertaken at this time. The NAC Report also supports such a presupposition. According to this report, the primary challenge hindering efforts in controlling the spread of HIV in Indonesia relates to the insufficient data and analysis available on HIV and AIDS. This is problematic, as such data, which must document prevalence, transmission patterns, key populations and related issues, is key to developing credible action plans and programs designed to control the socioeconomic pitfalls associated with HIV.

This study also supports the findings of this report. The socioeconomic costs of HIV to PLHIV within Indonesia have been profound. For instance, several cases of discrimination towards PLHIV and HIV households have demonstrated the negative economic consequences incurred by the target group. In the Semarang Regency for instance, a Female Sex Worker (FSW) was blacklisted from the sex industry upon the identification of her HIV status in an attempt to prevent HIV transmission to clients (Suara Merdeka, January 2009).

solutions to address these. The Commission estimated that, by 2015, AIDS will have caused an additional 6 million households in Asia to fall below the poverty line. The Commission also estimated that each AIDS death results in an average loss of at least USD 5,000 or 14 years of productive life calculated at a modest rate of USD 1 per day.

1.2. Objectives
In general, the objective of this study is to gather data, and to undertake an analysis based on the results of this data, which illustrates the socioeconomic impact of HIV at the individual and household levels in Indonesia. This study is also aimed at identifying effective investigation processes in efforts to obtain and find effective control approaches in addressing the socioeconomic ramifications stemming from HIV.

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This study is geared towards obtaining detailed data about identified factors which have direct correlations to the socioeconomic impact of HIV infections, as is follows: 1. Medical expenses for HIV and AIDS and its attributable infections at various stadiums; 2. Loss of income and employment for PLHIV or PLHIV caregivers; 3. Migration; 4. Household patterns of consumption; 5. Continuities or discontinuities in educational access for children; 6. Changes in household chore structures between children and parents; 7. Depletion of family savings; 8. Solutions toward problems like economic limitations; 9. Care and support; 10. Family member attitudes toward infected family members; 11. Knowledge and awareness about HIV and its transmission, and; 12. Social problems/stigma including: a. Discrimination toward PLHIV and their family members, b. Care of children whose parent(s) die of AIDS, c. Fear and stress due to stigma.

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2.

Methodology

2.1. Study Methods

In order to obtain full and comprehensive data on the socioeconomic impact of HIV among PLHIV and their households, this study utilised quantitative and qualitative methods. Quantitative methods employed included the application of surveys utilising standard instruments like a set of structured questionnaires and a survey guidance book. Qualitative methods included the conduct of thorough indepth surveys and Focus Group Discussions (FGDs). Households selected to serve as primary observation units were divided into two categories, namely Households with PLHIV or target groups and non-HIV households or control groups. In this study, Households with PLHIV are defined as a household which have at least one household member living with HIV. The HIV positive individuals also was the secondary observation unit, meaning the observation unit can be located on two levels - at the individual and household levels.

The survey for this study was entitled, The Survey on the Socioeconomic Impact of Health Problems in Households 2009 (SDGK 2009). The questionnaires used in this survey consisted of two questionnaires:

Qualitative methods including in-depth study and FGDs, were aimed at obtaining critical descriptions and information that could not be collected through surveys. The in-depth study was conducted through nonstructured interviews with chosen PLHIV respondents. Unlike method used in the survey, interviews were conducted in a direct manner without any standard questionnaires.

2. SDGK09-M questionnaire: consisting of specific questions regarding the HIV and AIDS problems including time of HIV identification, access to ART, modes of transmission, as well as stigma and discrimination. This questionnaire is called the module questionnaire and was addressed only to HIV positive respondents (PLHIV)

1. SDGK09-K questionnaire: consisting of general questions related to education, health and employment, addressed to both HIV and non-HIV households. Given the coverage of the questions, this questionnaire set is considered the core questionnaire.

FGDs were conducted in the form of general discussions with some community leaders, nonGovernmental Organizations (NGO), PLHIV groups, and related government authorities like the Health Department , the District AIDS Commission, Hospitals, the Manpower Agency, the Education Agenct and the District Development Planning Agency (BAPPEDA). Discussions were mainly focused on some of the key factors identified above, for instance, access to health services, and problems related to discrimination and stigma.

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2.2. Study Location

This study was conducted in seven provinces located throughout Indonesia, namely DKI Jakarta, West Java, East Java, Bali, West Nusa Tenggara, East Nusa Tenggara and Papua. Within these seven provinces, 13 cities were targeted for the quantitative study and seven cities were targeted for the qualitative study. Detailed study locations are outlined in the table below. Amongst the chosen provinces, West Nusa Tenggara and East Nusa Tenggara represented regions with low HIV prevalence, whilst the other five provinces represented regions with high HIV prevalence. In gathering data from these two groups, it is expected that the aforementioned data can be described as representative of the HIV and AIDS situation in Indonesia. Table 1. Study Locations No Province Quantitative Survey Location 1. South Jakarta City 2. East Jakarta City 4. West Jakarta City 6. Bandung City 8. Malang City 7. Surabaya City FGD Location

1 2 3 4 5 6 7

DKI Jakarta West Java East Java Bali

3. Central Jakarta City 5. North Jakarta City

1. Central Jakarta 2. Bandung City

West Nusa Tenggara East Nusa Tenggara Papua

9. Denpasar City 11. Kupang City

3. Surabaya City 5. Mataram City 6. Kupang City 7. Jayapura City

10. Mataram City 12. Jayapura City 13. Merauke City

4. Denpasar City

As outlined in Table 1, quantitative study locations in West Java, Bali, West Nusa Tenggara and East Nusa Tenggara included only provincial capitals. However, in East Java and Papua, quantitative study locations included both provincial capitals and other large cities. Studies in DKI Jakarta were conducted throughout the whole province, excluding Kepulauan Seribu. In contrast, all qualitative studies in the form of FGDs were only conducted in provincial capitals.

17

2.3. Sample Design

Currently, accurate data on the total number of PLHIVs and their geographic distribution are not available. This is problematic as such information is a crucial component in determining a sample frame which should be used as the basis of sampling processes when study is applying probability-based surveys. Limitations in the sampling frame have thus diluted the significance of the results contained within this report. These limitations mean this HIV and AIDS study merely explores the socioeconomic effects of HIV at the micro level, and it cannot be considered representational of larger frameworks of PLHIV.

Considering the aforementioned problems above, including the unavailability of data on the number of PLHIV and their geographical distribution, the sampling design used in the SDKG09 can be deemed quota sampling. The households sample size in each province is determined independently. Nevertheless, to measure the feasibility of size determination, the number of reported/estimated AIDS cases in each province was used as a validating value. Sample allocations for each province are listed in the Table 2 below. Table 2. Allocation of Sample Households for the SDGK09 per Province Province 1 DKI JAKARTA 2 WEST JAVA 3 EAST JAVA 4 BALI Number of AIDS cases 2,781 2,888 2,591 1,177 2,382 110 80 Number of sample households Target Control Total households households 280 197 211 56 25 25 280 197 211 56 25 25 560 394 422 112 450 50 50

Moreover, PLHIV data collected by government health facilities are likely underestimates for a number of reasons, including: a) many PLHIV do not know they are positive; b) not all PLHIV are ill, many live for a number of years feeling very well, and have no apparent reason to be going to health facilities; c) not all PLHIV visit health facilities to obtain treatment; and d) some many choose to use private health services. As is often said about the HIV epidemic, the number of people who know they are HIV+ is only the tip of the iceberg. Statistically, the data does not meet the validity requirements to be used as a basis in developing a sample frame for probability-based sampling processes.

5 WEST NUSA TENGGARA 6 EAST NUSA TENGGARA 7 PAPUA Total

1,019

225

1,019

225

2,038

18

2.4. Sample Selection Procedures

In general, sampling units for observation in this study cover three categories, that is: 1. 2. Households with PLHIV as target households; Individuals Living with HIV (PLHIV) 3. Households without PLHIV as control households, and;

Households with PLHIV in this study were the major observation unit or target group in terms of socioeconomic behavior observations, particularly in association with the HIV status of the family member. The households without PLHIV were the other observation unit or control group in this study in which its socio-economic behavior was also observed in comparison to that of the HIV household. The third observation unit of this study were the People Living with HIV or PLHIV. The socioeconomic behavior of the PLHIV was observed particularly in relation to their HIV status. Such observations also involved focusing on the non-normative attitudes towards the IV either from their society or from other family members, in the form of discrimination, stigma, unchaste treatment and isolation.

During the SDKG09 process, the chosen sample households of both PLHIV and non-PLHIV were visited by field officers in order to undertake quantitative surveys. After completing the survey, some of the participants were selected to become qualitative study respondents. Sample selection of PLHIV, PLHIV households and non-PLHIV households was conducted simultaneously and independently using respective procedures and sample selection methods. PLHIV sample selections for respondents in the in-depth study were conducted separately by qualitative study officers.

2.5. Analysis Method

As stated previously, sampling methods employed in this study were quota sampling which is categorized in the non-probability sampling type. This sampling technique does not employ equal opportunity toward each population member to be selected as part of the sample, hence it is impossible to conduct inferential analysis to obtain an estimate or generalization of the resultance statistic as a population parameter.

Overall, statistics used in the analysis only cover data proportion or percentage and averages.

This study can therefore been deemed a case study since the entire chosen sample unit is a single population. The analysis method used is a descriptive analysis which is carried out by describing or illustrating the existing data. This is similar to analysts in population data which are used to avoid drawing a general conclusion or generalization.

19

Respondent Profiles
This chapter documents the socioeconomic and demographic backgrounds of the sample PLHIV Households and non-PLHIV households involved in the study. A general profile of the sample PLHIV will also be included within this chapter. Since the study location covers 13 cities within the 7 sample provinces, samples only portray the condition of urban-based as opposed to rural-based HIV and non-HIV households. Hence, a comparison in conditions between urban and rural HIV and non-HIV households will not be possible in this study. In total, 996 PLHIV households, 996 non-PLHIV households, and 1,106 PLHIV were included as respondents in this study.

2.6. Profile of Respondents

The analysis contained in this section utalized two approaches, namely a household and an individual approach. A household approach includes studying any variable which exhibits household features such as household structure, income, and expenses. An individual approach involves examining variables describing individual characteristics like family position, age, sex, martial status, educational attainment, health and employment status.

2.6.1. Household Structure

Household structure in this analysis is characterized by two basic factors, namely the size of the household and the relationship between family members and the head of the family. Based on the above categorization, there are three types of household structure as is follows: (1) (2) A nuclear household composed of two of at least three of the main family components, namely the head of the household, his/her spouse, and child/ren; (3) An extended household consisting of a combination of the main family components above (head of the household, spouse, child/ren with other household members like children-in-law, grandchildren or other relatives. A single household, consisting of only one family member;

Based on the above description, there are specific and significant differences between PLHIV and nonPLHIV households. As described in Figure 1, the percentage of single and extended family HIV households stand at 17 percent and 32 percent respectively. The percentages are slightly higher compared to that of the non-HIV households at 15 and 20 percent respectively. Meanwhile, the percentage of nuclear family HIV household respondents was far below that of non-HIV nuclear family respondents, at 51 percent compared to 65 percent.

20

Figure 1. Distribution of Households according to Household Structure HIV Household Non-HIV Household 65 51 % of Households

32 17 15 20

Single

Nuclear Household Structure

Extended

The marital status of the head of family is also another distinguishing factor in the structure of PLHIV and non-PLHIV households. Generally, the percentage of family heads that are widowed or divorced in HIV households was 26 percent, far higher than that of non-HIV households at 14 percent. Structural differences between PLHIV and non-PLHIV households in terms of the highest educational attainment of the head of the households were basically non-existent with the percentage of family heads graduating from high school or higher in HIV households standing at 59.2 percent, in comparison to nonHIV households, at 60.6 percent.

Another household structure characteristic which differed between PLHIV and non-PLHIV households related to the sex of the head of household. As documented in Table 3, the percentage of women who generally become the head of family in PLHIV households stands at 25 percent, while in non-PLHIV household it stands at 15 percent.

Even though the selection of control groups, meaning non-PLHIV households, was attempted in such a way that the sample would possess similar characteristics, they eventually displayed higher percentage of unemployed head of households in the target group, meaning PLHIV households, at 27 percent compared to that of non-HIV households, at 16 percent. For instance, the percentage of the head of households working in the administration or government sector stands at 5 percent, only half the percentage of non-HIV households.

21

Table 3. Percentage of Respondent by Sex, Age, Type of Employment and Level of Education for Head of Households HIV households Sex Male Female Age Group 15-19 20-24 25-49 50+ Marital Status Not married Married Widowed Divorced Employment Education/health/community service Trading Transportation/communication Household personal service Administration/government Others Unemployed Highest Education Not yet finished elementary school Elementary school Junior high school Senior high school University 75 25 0 5 61 34 Non-HIV households 85 15 1 6 66 27

16 59 18 8 22 16 8 9 5 13 27 6 17 18 43 16

13 73 9 5 20 18 9 8 10 17 16 5 16 19 44 17

2.6.2. Economic Status

An analysis of the household economic profile of respondents based on the household expenses approach in this section will be assessed with reference to two aspects, namely household expenses structure and consumption patterns. The time reference for each expense in the analysis is one month.

22

The composition of the sample household based on monthly expenses per capita as described in Figure 1 showed similar distribution patterns. The pattern denoted by the household percentage was to steadily increase up to the point (modus) of a certain expenses category before declining progressively afterwards. Similar patterns are shown in both household groups studied, except the percentage of HIV households in the two highest monthly expenses per capita category (IDR 1-2 million or above) had higher expenses than that of non-HIV households. Hence, the average total monthly expenses for HIV households was IDR 958,510, compared to IDR 780,968.00 for non-HIV households.

Figure 2. Distribution of Sample Households by Household Income Categories HIV Household Non-HIV Household 37 32 % of Households 25 25 23 24

11

<250

250 - 500 500 - 1,000 1,000 - 2,000 2,000+ Average Monthly Income per Capita in Thousands of Rupiah

Besides sample household profile analysis based on expenses, an analysis on the similarities between PLHIV and non-PLHIV households based on income also occurred. The latter analysis produces a relatively similar result to that of the former analysis, meaning income distribution patterns generally accorded to general society income distribution patterns which increased to a certain percentage point for income groups (modus) before progressively declining afterwards. Similarly to the expenses analysis, the average HIV household monthly income per capita was found to be generally higher at IDR 917,544 compared to non-HIV households, at IDR 844,134. When the average monthly income per capita was compared to the poverty line, two categories of households were evident, that is, households below or above the poverty line. Since this survey was conducted in urban areas, the urban poverty line was utilised based on the derived monthly income per capita of IDR 222,123 (March 2009). Based on this data, it can be ascertained that approximately 7.9 percent of PLHIV households fall below the poverty line, while 6.5 percent of non-PLHIV households can be described as in poverty. This means that if there are 1000 PLHIV households, 79 of them are below

23

the poverty line, in comparison to 65 out of 1000 non-HIV households. This means poverty levels for HIV households are higher than that of non-HIV households.

Figure 3. Distribution of Sample Households by Household Expenditure Categories HIV Household 35 % of Households 27 21 18 10 7 5 35 Non-HIV Household 36

<250

250 - 500 500 - 1,000 1,000 - 2,000 2,000+ Average Monthly Expenditure per Capita in Thousands of Rupiah

Respondents economic status profile can also be derived based on their land and house ownership status, and their ownership of other assets. Based on the SDGK09 analysis, it is evident that there is no significant differences between PLHIV and non-PLHIV households in terms of their ownership of land, buildings, motor vehicles, household and electronic goods. There are significant differences however in terms of ownership of jewellery, with 47 percent of PLHIV households possessing jewellery in comparison to 58 percent of non-PLHIV households.

24

Table 4. Sample Households According to Ownership of Assets and Other Consumer Durables (%) Asset Owned
Land Building(s) Jewellery Motor vehicle(s) Household Goods Electronic Appliances

HIV households
25 43 57 80 87

Non-HIV households
25 45 61 86 88

47

58

2.6.3. Basic Amenities Status

Generally, sample and control households do not show significant differences in terms of access to basic services. Both households possess adequate basic facilities such as electricity, water and sanitation. Some differences however are evident. For instance, more non-PLHIV households possess home toilets compared to PLHIV-households. This is likely the result of a stronger house ownership status for nonHIV households, with more non-HIV households owning a house than HIV households.

Sources of drinking water for PLHIV families and non-PLHIV families are also slightly different. More PLHIV families consume bottled water. The need to access healthier water sources due to prevailing health conditions of family members may be the reason behind the higher utilization of bottled water by HIV households than non-HIV households. Another possible contributing factor as to why target groups consumed more bottled water could be due to the unavailability of piped water sources. In Indonesia, piped water is usually used for drinking water, even though such water cannot be easily accessed, dispensed and is of a poorer quality compared to that of bottled water.

25

Table 5. Basic Amenities by Household Classification (%) HIV Households

47 33 18 62 37 96 4 1

1
Drinking Water Source Refilled/Bottled Water Piped Water Toilet Well Others Home Public

Non-HIV households
44 36 19 67 33 97 3 1

Lighting Source Electricity Non-electricity

2.7. Profile of PLHIV Respondents

Based on an understanding of body liquid exchange from an infected to a non-infected person, PLHIV respondents in the survey are divided into key population groups at higher risk of HIV or according to HIV transmission models as is follows: injecting drug users (IDUs); sex workers (female and male); transgenders; men who have sex with men (MSM); spousal transmission group; mother to child transmission group (MTCT), and; blood transfusion transmission group. Other transmission possibilities are categorized as other groups.

Most of the male PLHIV respondents surveyed were IDUs (73%) while most of the female PLHIV respondents can be categorized as part of the spousal transmission group (48%) The number of respondents categoried as MSM or transgenders in this study was very small, and further analysis of the study data will not be disaggregated according to mode of transmission or key population groups at higher risk of HIV.

More than half or 58 percent of the 1,106 PLHIV respondents who participated in this in this survey were IDUs. Looking at likely mode of transmission among the PLHIV respondents, the second largest population group is the spousal transmission group, at around 18 percent.

26

Figure 4. Distribution of PLHIV Respondents Based on Type of Transmission (%)

It is important to compare this study population to the larger estimated population of PLHIV in Indonesia. The MOH study of PLHIV in 2009 estimated that about 33% were IDU, and 4.4% were partners of IDUs. 5 This study population therefore considerably overrepresents both of these groups. On the other hand, other PLHIV populations are significantly underrepresented, especially compared to their estimated size of all PLHIV in Indonesia, especially : 24.7% clients of female sex workers and 15% MSM.

2.7.1. Age, Sex and Education Level

As predicted, most of the PLHIV respondents were considered in the economically productive age, with most respondents aged between 25 59 years of age. Overall, the percentage of male PLHIV respondents was 70 percent, far higher than female PLHIV respondents at just 30 percent. The percentage of male PLHIV respondents aged 25 49 years of age was 85 percent, while 73 percent of female PLHIV respondents fell within this age bracket. Females were higher represented in younger age groups (0-14, 15-19 and 20-24 years of age) than their male counterparts at about 4-5 percent, although the average age of female PLHIV respondents was of 28 years of age, while male respondents were 2 years younger.

The data demonstrates that more females are infected with HIV at a younger age compared to males. This usually transpires when women from a younger age group are exposed to HIV from their older male spouse. The next chapter maps differences in HIV exposure sources among male and female respondents.

Estimation of Vulnerable Populations and PLHIV in 2009, MOH, Indonesia

27

Figure 5. Age and Sex of PLHIV Respondents (%)

Male
% of PLHIV Respondents

Female

Total

85 73

81

5 0-14

5 15-19

11

16 12 2 20-24 25-49 1 50+ 2

Age group
Similar to higher education patterns in the general adult populace in Indonesia, 68 percent of the PLHIV respondents were above 18 years of age and had attended senior high school or an equivalent institution. Despite this, 14 percent of PLHIV respondents had not finished junior high school, a figure above that of the general adult population.

Based on Figure 6 below, it can be concluded that female PLHIV respondents education levels are lower than that of their male PLHIV counterparts. It is shown that more female PLHIV respondents had graduated from junior high school or lower, whilst more male PLHIV respondents has graduated from senior high school and university.

Figure 6. Highest Education Levels Obtained by PLHIV Aged 18 Years or Older

28

2.7.2. Marital and Employment Status

Almost 90 percent of female PLHIV respondents had been or were married in comparison to only 50 percent of male PLHIV respondents. This data indicates that women tend to marry at a younger age than men.

An exceptional finding from the marital status data by respondents relates to the divorce or widowment rate, with as many as 37 percent of female PLHIV respondents surveyed experiencing divorce or widowment. This percentage is quite high compared to male respondents, with only 16 percent having experienced either one of these calamities, although the percentage of non-married male PLHIV respondents was far higher than that of females, at 49 percent to 13 percent respectively.

Figure 7. Marital Status of PLHIV Respondents Aged 18 Years or Older (%)

Male
49 % PLHIV Age =>18yo 39

Female
50 43

Total
45

24 13 3 Not Married Married Widowed 9 13 5 Divorced 7

The next figure demonstrates the type of employment undertaken by PLHIV respondents according to sex. The data shows that 75 percent of male PLHIV respondents were employed when the survey was undertaken, with most working as laborers (41%), as business owners (27%) and then as casual workers (7 %). Meanwhile, the data reflects that of the female PLHIV respondents surveyed, only half of them were employed, with 27 percnet working as labourers, 19 percent operating their own business, and 6 percent as casual workers.

29

Figure 8. Occupation of PLHIV Age 18 Years Old or older

Male

Female

Total
48

% PLHIV Age =>18yo

41 27 19 27

37 31 25

25

Own Bussiness

Employee/Labor

Casual Worker

Unemployeed

2.7.3. Year of HIV Diagnosis

Most PLHIV surveyed were diagnosed with HIV during 2004-09, meaning that most of the PLHIV respondents were probably infected in 1999-2004 since the gap between the period of infection and the period of detection usually is around 5 10 years. Usually, PLHIV seek testing after suffering from several opportunistic infections. Amongst 1,106 PLHIV surveyed as many as 678 or 88 percent of them were diagnosed with HIV during 2004-09.

Figure 9. Number of PLHIV Respondents According to Year of HIV Diagnosis Male Female # AIDS Cases Reported
1,195 94 255 219 345 316 4,969 3,863 2,947 2,639 2,873

106 1 0 1 1 20 2 2 21 6 48 8 67 23 32

143 72

143 67

140 71 65 49

1996

1998

2000

2002

2004

2006

2008

30

31

3. The Impact of HIV in terms of

Employment and Income
There is a clear correlation between HIV and AIDS and greater employment and income insecurity. Since most PLHIV are of a productive age group, the impact of HIV and AIDS is not only detrimental to PLHIV but also to their dependents. The International Labour Organisation (ILO) estimates that at least 26 million PLHIV worldwide, or a third of all PLHIV, are members of the productive workforce aged between 15 and 49 years of age (Lisk 2002).

PLHIV are often stigmatized and discriminated against within the workplace. Such workplace stigmatization and discrimination often correlates to income loss for PLHIV and their families, particularly when the person feels compelled, or is forced, to leave his or her job. The family members of PLHIV are at greater risk of losing their income and employment especially in the later stages of the illness, when PLHIV are in desperate need of intensive care.

This chapter aims to determine the impact of HIV on employment outcomes remembering that as many as 1,076 of the surveyed 1,106 PLHIV, or 97 percent, were aged between the economically productive age of 15 and 64 years, when most should be playing an active economic role in their households. If such an assertion is accurate, any negative impact caused by HIV and AIDS to their employment status, would have financial repercussions for the entire household. The chapter focuses on the impact of HIV-AIDS in terms of employment and household income within the target group. The impact on individual earnings and household income is examined from two angles: (a) when employment and income loss occurs due to illness and death within PLHIV families, and; (b) when employment and income loss occurs due to a leave of absence from work in order to care for a PLHIV.

3.1. Work Force Participation

It should be noted that although this study is based on macro-indicators, there still exists insufficient data to generalize the findings of this study or to draw any definite conclusions. As previously explained, the limited population parameters and purposive sampling methods are not conducive to a generalization of the findings.

In order to examine employment issues properly, those surveyed are divided into two population groups, namely those who are of a working age and those who are not. The working age is defined as people aged 15 years or older. The working age population is then categorized into labour force or non-labor force groups. The labour force group is defined as working age people who are employed, self-employed or seeking employment. The non-labor force groupn is defined as working age people who conduct household duties, study, or conduct other non-work related activities.

32

Figure 10 illustrates the proportion of household members who were employed or seeking employment were higher in non-HIV households compared to HIV households. Likewise, the proportion of household members who were studying or conducting household duties was higher in non-HIV households compared to HIV households. In contrast, there were more household members doing other activities in HIV households (13 percent) than in non-HIV households (6 percent). Therefore the potential income generation within HIV households was below optimal due to the relatively high level of other activities being conducted. When primary activities were disaggregated by gender, the proportion of male household members conducting other activities was higher than women in HIV households.

Figure 10. Primary Activity Distribution Patterns of Respondents Aged 15 Years or Older (%)

The proportion of household members in PLHIV households who were permanent employees was lower compared to non-HIV households. The proportion of household members in HIV households who were permanent employees was only 32 percent, whereas in non-HIV households the proportion was 37 percent. The proportion of household members who were self employed was higher for HIV households than for non-HIV households. Table 6. The Employment Status of Household Members (%) HIV households 2 Self-employed Permanent Casual Unemployed Male 24 37 34 5 Female 15 26 57 3 Total 19 32 4 45 21 47 29 3 Non-HIV households Male Female 12 26 60 2 Total 17 37 2 45

33

3.2. Household Income

Household income is defined as any income which originates from wages, salaries, revenue from businesses, revenue from non-business sources, pensions, royalties, interest, dividends, the sale of goods, receipt of transfers, and other sources like receivables, lotteries, and so on. There is a strong correlation between household income and the economic status of a household - The higher the income, the higher the level of prosperity.

The survey found that the average monthly income per capita for the whole sample was IDR 881,254. As previously discussed, the proportion of HIV household members who work were less than that of nonHIV households. The average income per capita however was higher for HIV households than for non-HIV households. The average monthly income per capita was IDR 917,380 for HIV households and IDR 845,370 for non-HIV households, but the component of household income originating from wages and salaries was far lower in HIV households than in non-HIV households (Tables 1 & 7). The income component from business activities, whilst slightly higher for HIV households, was relatively similar. Table 7 illustrates that the higher monthly per capita income for HIV households was mainly due to the contribution of money transfers, which totaled 14 percent of the entire monthly income per-capita. This indicates that the income of HIV households was heavily influenced by the receipt of money transfers. Table 7. Sources of Income and Average Monthly Income per-Capita

Sources of Income
Wage/salary Pension

HIV households
IDR %

Non-HIV households
IDR % 474,010 56% 200,315 24% 45,048 5% 22,724 3% 78,449 9% 20,569 2% 1,438 0.2% 2,818 0.3%

455,909 50% 217,793 24% 47,606 5% 28,502 3% 2,448 0.3% 5,410 0.6%

Business revenues Royalties/interest Other

Non-business revenues Sale of used goods

Receipt of transfers

Total

131,720 14% 27,750 3%

917,138

845,370

3.3. Changes in, or Losses in, Employment and Income

One consequence of HIV is the immune systems ability to protect the body against disease (Spiritia 2008), with an increased susceptibility to various diseases for PLHIV. When PLHIV succumb to such diseases they oftentimes require home-based care and treatment (Spiritia 2008). When illness
34

Figure 11 documents the percentage of HIV-positive respondents aged 18 years or older who have ceased working. Loss of employment for such respondents, whether male or female, was much higher than that of non-HIV positive respondents in both HIV and non-HIV households. Although the 1945 Indonesian Constitution guarantees that, Every citizen has the right to decent and humane work and livelihoods, in practice, discrimination against certain groups, including PLHIV, means that such groups experience greater employment insecurity relative to the general populace. Of the total PLHIV surveyed, 19 were dismissed from their employment due to their HIV status.

eventuates, the PLHIV and his/her carer are forced to reduce their activities, including the level and intensity of paid work, with consequences including reduced income and greater employment insecurity.

Figure 11. Loss of Employment Patterns for Respondents Aged 18 Years or Older (%)

% of Respondenta Age =>18yo

52 34 40

Male

Female
38 22 22

PLHIV

Non-PLHIV in PLHIV household

Non-PLHIV in Non-PLHIV household

There were a number of reasons why PLHIV ceased working. The three main reasons aside from their HIV status, was resignation (38 percent), the expiration of their work contract (13 percent) and layoffs (6 percent).

Table 8. Reasons for Withdrawal from Work by PLHIV (%)

Male 37 14 30 7 7 5 Female 41 10 37 4 8 0

Reason for Leaving Work Resigned Laid off Other Felt they could no longer work Contract expired Fired due to HIV+ status

Total 38 13 31 6 7 4

35

Not only did a HIV diagnosis correspond to a cessation of work for many surveyees, a HIV diagnosis also affected the status and type of work conducted by respondents. This is illustrated in Table 9 below, where the total number of PLHIV previously operating their own business prior to their HIV diagnosis plummeted to 69 percent after a definitive HIV diagnosis. Of these, 13 percent became labourers or employees, 2 percent became casual workers, and 16 percent joined the ranks of the unemployed. Likewise, only 56 percent of the PLHIV who had previously been laborers or employees were still permanently employed after their HIV diagnosis. Fifteen percent had become self-employed, 5 percent became casual workers, and 24 percent had ceased to work. Table 9. PLHIV Respondents According to their Employment Status and Type of

Employment Before and After HIV Diagnosis (%)

Employment Status Prior to HIV Diagnosis

Current Employment Status (After HIV Diagnosis)

Self Employed Laborer/ Employee Casual Employee Unemployed

Male
Self employed Laborer/employee Casual employee Unemployed Self employed Laborer/employee Casual employee Unemployed Self employed Laborer/employee Casual employee Unemployed

Female

66 17 12 22 80 8 0 12 69 15 9 18

16 57 9 39 3 51 8 22 13 56 9 32

3 6 56 5 0 3 77 3 2 5 62 4

16 20 24 34 18 38 15 63 16 24 21 46

Total

Immune system deficiencies arising from HIV results in an increased susceptibility to disease for PLHIV. Within the last month, 21 percent of respondents in HIV households claimed they had lost workdays due to illness or because they assumed a caretaker role for someone who was ill. This was significantly higher than respondents in non-HIV households who claimed less than a quarter of this figure (5 percent). Furthermore the average work days lost due to illness both for the PLHIV and their caretakers was five times higher (12 days per year) than respondents in non-HIV households (2.4 days per year).
36

Losses in working days translate into losses in income. The average income loss experienced by respondents in HIV households was IDR 233,322 per day, whereas the average income loss for respondents in non-HIV households was IDR 164, 457 per day. Therefore the average loss of income due to illness in HIV households was almost 50 percent higher than that of non-HIV households.

Table 10. The Average Number of Workdays and Income Lost Due to Leaves of Absence From Work
HIV households 3 Male 4.7 258,760 Female 3.7 146,833 Total 4.4 233,322 Non-HIV households Male 3.0 191,368 Female 3.2 107,471 Total 3.0 164,458

Average workdays lost (days per month)

Average income lost (IDR per day)

37

4. The Impact of HIV on

4.1. Household Expenditure

Household Expenditure, Savings, and Assets

Differentiated expenditure data (in IDR) according to food groups, non-food items, and non-consumables, can be used to examine expenditure patterns in households. Expenditure data can also be used to indicate income data. In situations where income is limited, food will become a priority, thus low income groups will spend most of their income on food. As the level of income increases, there will be a gradual shift in spending patterns. There will be a reduction in the proportion of income spent on food items and an increase in the proportion of income spent on non-food items (Central Bureau of Statistics 2008).

Spending patterns can be used to evaluate the economic welfare of the population. A lower proportion of expenditure spent on food indicates economic improvements by the said population. According to Engels proposed law in the Central Bureau of Statistics (2008), if there is no difference in the types of food purchased, the proportion of income spent on food declines with increased income. This trend was identified in the income and expenditure survey data. There are many factors that influence household living expenses. These include household size and the price of goods, especially staple goods. The higher the price of such goods, especially staple goods, and the greater the number of household members, the higher the rate of household expenditure.

HIV and AIDS can affect the level and patterns of household consumption. For instance, expenditure on medical goods and services related to HIV and AIDS often means households must reduce expenditure on other items. For lower middle class and poor families the budget for basic needs such as food, clothing, and childrens education must be reduced or even eliminated. This is problematic, remembering that reductions in income also generally occur, as family members who tend to be infected with HIV are those of a productive age, as discussed in detail above. Often families may need to sell goods and assets to cover medical expenses. It is not unusual for families of PLHIV to spiral into debt in order to meet their most basic daily needs and to cover the cost of treatment for PLHIV.

Monthly per-capita income for HIV households was higher compared to non-HIV households. In addition to income, expenditure per-capita was also much higher in HIV households than in non-HIV households. To overcome high levels of expenditure, it is assumed that HIV households supplemented income
38

The main impact on monthly HIV household expenditure is the rising cost of treatment. This is because households have to meet the cost of treatment and care themselves as the government does not provide financial assistance in this area.

deficiencies with money transfers originating from other households. The amount of money wired to HIV households was 2.25 times greater than the amount of money wired to non-HIV households. Yet the total monthly income per capita for HIV households was less than the monthly per capita expenditure. This differs from non-HIV households in which average total monthly income per capita was higher than monthly per capita expenditure.

Figure 12. Average Monthly Household Income and Expenditure per Capita (IDR) According to Household Classification

Income without transfer

Average Income and Expenditure (Rupiah)

Income with transfer

Expenditure

958,557 917,138 845,370 757,668 780,968 746,352

HIV Household

Non-HIV Household

An investigation of expenditure in this study found that HIV households with low incomes had lower expenditures compared to non-HIV households. The opposite condition was observed in HIV households with high incomes however. This could indicate different allocations of spending in households with high and low incomes. High income families tended to allocate more funds to the treatment and care of family members, whereas low income families tended to delay spending on treatment.

This study found that over half of the monthly household income in both the target and control group was used to meet clothing, household, food, and beverage needs. Differences were observed however in the types of food purchased. HIV households tended to buy more prepared food products than non-HIV households, whereas non-HIV households tended to buy more unprepared food products than HIV households. There are many possible causes for this. For example, PLHIV family members may require certain kinds of food, or HIV households may have purchased more prepared foods for reasons of convenience, as most HIV households in this study were renting houses with limited water and cooking facilities.

39

The most significant difference in expenditure was observed in health care costs. HIV households spent 11 percent of their monthly income on health care. This figure was far greater than in non-HIV households in which only 3 percent of the total household income was spent on health care.

In relation to health care needs, PLHIV families were forced to reduce expenditure on basic needs such as food, beverages, clothing, household goods, consumables, and even education. This is unsurprising because variations in food expenditure are usually caused by an urgent need for non-food expenditure due to traditional ceremonies, marriage, or to cover the cost of medical treatment and care. An interesting expense in HIV households relates to smoking. The data illustrates that HIV households tended to spend more of their income on cigarettes compared to non-HIV households. Although the relationship between smoking and HIV-AIDS cannot be generalized, this finding indicates that HIV households tend to spend a significant amount on cigarettes.

Table 11. Average Monthly Expenditure Per Capita (IDR) According to the Type of Expenditure and Household Classification Expenditure Category
Clothing & household goods Prepared food Health Cigarettes Education

HIV Households
IDR % 307,260 32% 101,620 11% 91,555 10% 78,191 8% 215,711 23% 152,547 16%

Non-HIV Households
IDR % 274,044 35% 195,289 25% 117,841 15% 21,905 3% 53,167 7% 780,968 91,651 12%

Unprepared food & beverages Non-consumables Total Expenditure

11,674 1.2% 958,557

27,072 3.5%

A quintile analysis, in which the population is divided into five groups representing 20 percent of the population, showed a similar pattern in all quintiles for monthly per capita household income and expenditure in both HIV households and non-HIV households. The first quintile, namely the 20 percent of households with the lowest income, had an average per capita income that was lower than expenditure. This shortcoming amounted to approximately 10 to 11 percent, which can be interpreted as meaning that the 20 percent of households with the lowest income funded 90 percent of their expenses from the household income. The difference was covered by non-income revenue. In contrast, the following four quintiles had a surplus of income each month in which the rate of surplus increased as incomes rose.

40

Table 12. Average Monthly Expenditure and Income Per Capita (IDR) According to Quintiles and Household Classification Income and Expenditure Per Capita in the Five Quintiles 1 HIV households Income Expenditure Difference Income 239,389 265,629 -11% 248,968 275,045 -10% 441,218 419,685 5% 439,100 418,894 5% 644,128 564,318 12% 634,749 566,430 11% 971,163 804,274 17% 974,080 801,997 18% 2,587,211 1,888,712 27% 2,211,015 1,697,334 23% 2 3 4 5

Non-HIV households Expenditure Difference

4.2. Savings and Assets

The data demonstrates that HIV households tend to have less capacity to accure savings compared to non-HIV households who possess an equivalent socioeconomic status. The data showed that PLHIVhouseholds tended to experience higher levels of asset decline and increased debt compared to nonPLHIV households. These findings were predictable considering the earlier findings that HIV households tended to have greater illness-related financial needs, primarily for treatment and care.

The percentage of HIV households who possessed savings (46 %) was smaller than that of non-HIV households (53 %). The percentage of HIV households with insurance (15%) however, including health insurance, was similar to that of HIV households (17%), although the rate of insurance was lower in the former.

The percentage of households who claimed to have additional assets was the same for both HIV households and non-HIV households (41 percent). It is assumed however, that HIV households do not generally own valuable additional assets. This study did not explore what was meant by assets, however in middle to lower socio-cultural groups, especially those living in similar communities, there was a tendency to own assets equal to those of ones neighbor.

41

Figure 13. Distribution of Assets, Savings, and Debts in Sample Households HIV Household 53 46 % of Households 41 41 Non-HIV Household

15

17

16 9

11

Saving/Deposits Insurance Asset increment

Asset decrement

Debts

Household savings were generally used when households faced urgent economic needs. Out of 996 HIV households, 741 or 74 percent claimed to experience additional expenses and reduced income after one of its members were diagnosed with HIV and AIDS. Approximately 471 households or 64 percent of all HIV households expended savings to overcome financial difficulties. Figure 14 illustrates the number of HIV households that experienced changes in income and expenditure as a result of HIV infection and the use of savings to overcome such difficulties.

Figure 14. The Number of HIV households that Experienced a Change in Income/Expenditure Following HIV Diagnosis

42

5. The Impact of HIV on

Childrens Education
Access to education is seen as tatamount to HIV prevention and reduction (World Bank, 2002; Boler and Kate, undated; Vandemoortele and Delamonica, 2000). In 2000, a new term was coined to describe the correlation between HIV prevention and reduction and good access to education, namely the education vaccine. Despite this, the numbers of PLHIV who are forced to reduce or cease their education due to HIV and AIDS is quite large. From a global standpoint, HIV and AIDS represents a major challenge to the Millenium Development Goal (MDG) of securing education for all by 2015 (UNESCO, 2001; Wijngaarden and Shaeffer, 2004).

A high level of absenteesm from school by children from PLHIV families, who may need to attend to the needs of their family or to attend to an ill family member, undermines childrens access to education. Budgets previously allocated for their education are ofter redirected to other expenses including medication and treatment for sick family members. The quality of education is likewise undermined, since childrens concentration is often directed towards personal problems at home rather than lessons, and fear of, or actual, community stigmatization towards the PLHIV family member in question. In this chapter, the impact of HIV towards childrens education is documented with reference to children from the target and control groups. School attendance levels, reasons for leaving school, and gender disparities are documented in the following pages.

5.1. Educational Attainment

Education has positive correlations to an individuals quality of life. The higher the education level of a person, the closer they are to leading an ideal life due to the knowledge and insight they possess. Table 13 below illustrates that in general there was no significant difference in the percentage of the highest education levels attained by respondents aged 18 years and over from PLHIV and non-PLHIV households. In fact, the percentage of PLHIV respondents who completed senior high school was higher than the percentage of people without HIV in PLHIV and non-PLHIV households.

Table 13. Respondents Aged 18 Years or Older According to Educational Attainment (%)
Highest Level of Education Attained Did not complete elementary school Elementary school Junior high school Senior high school University HIV household PLHIV Non-PLHIV 10 18 54 14 4 18 17 46 14 6 Total 15 17 49 14 5 Non-HIV households 15 18 47 16 5

43

The educational attainment of respondents in this study was relatively similar to that of the general population, with the largest percentage of the population securing a high school level or an equivalent education.

5.2. Levels of School Participation

Age categorization in this section is limited to three age groups, namely primary school aged children (612 years), junior high school aged children (13-15 years) and senior high school aged children (16-18 years).

As outlined above, globally it has been found that HIV and AIDS affect childrens education in terms of access to, and the quality of, education. With regard to Indonesia, this report documents the undermined economic capacity of such households, which often forces children to leave schools due to concurrent reductions in the family income and rising health expenses. Children, particularly female children, may assume a caretaker role for the sick family member, or be forced to contribute to the family income. Children with HIV-positive parents or from families with PLHIV may be rejected by school authorities due to fear and stigma.

Table 14. Percentage of Respondents Currently Attending School Age Group

0-5 Yr 6-12 Yr 13-15 Yr 16-18 Yr 19-24 Yr 25+ Yr Total

HIV household Male Female

23 91 92 57 15 12 1 32 91 84 59 17 12 1

Total
29 58 12 16 1 91 87

Non-HIV household Male Female Total

26 89 93 76 23 28 1 39 93 99 63 21 20 1 31 69 24 22 1 91 96

The data highlights that there is no difference between children aged 6-12 years from PLHIV and nonPLHIV households in terms of drop-out rates at the elementary school levels. Differences in drop-out rates occur at the junior high school level, in children aged between 13-15 years, with a higher level of children from HIV households dropping out of school compared to children from non-HIV households. After that, the gap in drop-rates between the target and control groups widens at each level of schooling as documented in Table 14, with the gap in drop out rates between the two groups at 10 percent at the junior high school level, before increasing to 19 percent at the senior high school level and then 50 percent at the tertiary level. In all the aforementioned cases, lower drop out rates are schewed in favour of children from non-HIV households.

44

Figure 15 documents the percentage of PLHIV respondents aged 5-18 years currently attending school (58%) compared to non-PLHIV respondents in PLHIV households (78%) and non-PLHIV respondents from non-PLHIV households (82%). The percentage of PLHIV aged 5-18 years that have never previously attended school or have subsequently dropped out, is over three times higher compared to that of nonPLHIV respondents from PLHIV and non-PLHIV households. This is consistent with earlier findings described above. Since HIV households tend to be poorer than non-HIV households, with a smaller budget allocation devoted to childrens education, it is likely that there were limited funds available for continued schooling.

What this means, is that school-aged children from HIV households have poorer access to education compared to non-HIV households. This may be due to economic pressures like additional health expenses in HIV households.

Figure 15. School Participation Rates of Respondents Aged 5-18 Years According to HIV or Non-HIV Status (%) % Respondents Aged 5-18 Years Old

PLHIV Non-PLHIV in PLHIV Household Non-PLHIV in Non-PLHIV Household

53 30 17 12 10 10 7

78

82

Never attending school

Drop-out

In school

5.2.1. Dropout Levels

Other surveys seem to suggest there is a positive correlation between PLHIV households and drop-out numbers, with female children disproportionately affected compared to male children, likely due to family pressures to adopt the traditional caretaker role for the ill family member. As discussed above, this study supports the results of such surveys. In total, 69 of the surveyed children aged 5-17 years, left school for various reasons. Of this figure, 38 of the 520 children from HIV households or 7 percent dropped out of school compared to 31 of the 656 children or 5 percent from non-HIV households. There were many reasons which compelled the children to drop out of school, including the belief that they had
45

obtained a satisfactory level of education, because of financial constraints within the family, due to shame, because of mounting responsibilities at home, and so on.

Table 15. Number of Respondents Who Dropped Out of School According to Reason and Household Classification HIV household Non-HIV household Total
1 2 2

Belief they have obtained a satisfactory level of education Financial constraints Shame Household responsibilities Others

Male
1 7 0 1 4

Female
0 2 1

Male
3 8 0 1 5

Female
0 7 0 2 5

Total
3 0 3

12 10

19 14

15 10

Total

13

25

38

17

14

31

As documented in Table 15 above, the most stated reason for dropping out of school for children from HIV households was financial constraints at home, with 19 out of 38 children admitting they had left school as a result.

5.2.2. Attendance Levels and Other Schooling Problems

Not only is there a positive correlation between HIV households and increased school dropout rates; HIV also has an impact in terms of low school attendance levels for children from HIV households. The percentage of children enrolled in school who often skip classes is far higher when they originate from HIV households (17%) in comparison to children from non-HIV households (7%). Children enrolled in schools who have been held back a class, are more likely to originate from HIV households (16%) compared to children from non-HIV households (10%). In addition, children who had experienced school relocation were two times more likely to originate from HIV households (16%) compared to non-HIV households (7%).

Table 16. Respondents Currently Enrolled in School Who Often Skip Class, Have Previously Been Held Back a Class and Have Relocated to Other Schools According to Sex and Household Classification
HIV household 5 Often Skip Class Held Back a Class Relocated to Other School Male 17 17 17 Female 18 14 16 Total 17 16 16 8 8 Non-HIV household Male 10 Female 10 6 6 Total 7 10 7

46

The most cited reason for moving to another school was due to house relocation (72%) and in order to attend a school which was more appropriate in terms of its location and situation (23%). Even though house relocation was the most popular reason for school relocation for children exclusively based in HIV households (33 %), another common reason included shame (21%), a reason which was undercited for children from non-HIV households (only 3%). Reasons for shame may include the HIV status of themselves or their family member or because of being held back a class, with most children in this category originating from HIV households.

The most cited reason by the 135 respondents in regards to skipping class was due to laziness (58 %), with most of the respondents based in non-HIV households (70%) compared to those from HIV households (51%). Other reasons cited included work (about 4%) and the need to attend to an ill family member (2%).

Figure 16. Reasons for School Relocation by Respondents (%)

% of Respondents in School

PLHIV Household

Non-PLHIV Household

72

27 3

33 21 2 0 3 Shame Seek more suitable school Migration 16 23

Other

Had to take care of sick

5.3. School Status and Education Costs

Most of the children surveyed, regardless of household status (non-HIV or HIV), were currently attending public school. The percentage of children from HIV households (31%) however, who attended private school was higher than that of non-HIV households (25%). This fact is quite intriguing, since private school facilities usually apply higher education costs, and the economic capacity of HIV households is lower than that of non-HIV households.

Most households surveyed had the capacity to pay for their childrens education, with 80 percent of HIV households claiming to possess this capacity, a bit lower than that of non-HIV households, at 84 percent.
47

The percentage of households which had the capacity to pay for their childrens education up to a certain educational level was a little lower than the percentage of households which had the capacity to cover current educational costs across the board, without setting an upper limit on the educational level of their children.

Table 17. Percentage of Household According Capacity, Financing and Ideal Education Level and Household Classification 6 HIV household
80 78 26 46 43 11

Non-HIV household
84 81 23 56 34 9 38 55 4 40 9 46 6

Have the capacity to pay for current education costs across the board Have the capacity to pay for education costs up to an expected educational level Childrens education is supported by an external party within the last year Forms of support from an external party (%) School fees and other educationa costs Money/cash Other Provider (%) Family Government Others Ideal educational level High school Diploma Bachelor degree Masters degree

56 37 3 45 7 44 4

The ideal educational level cited by the heads of most HIV households for their children was up to the senior high school level (45%), whilst the heads of most non-HIV household hoped their children would eventually obtain a Bachelor decree (46%).

As many as 26 percent of HIV households and 23 percent of non-HIV households stated they received support from an external party in the provision of education for their children over the course of a year. Most HIV households (56%) received educational support from family members outside their household, while most non-HIV households (55%) received support from the government. This differentiation seems to strongly relate to the percentage of HIV household members who attend private school facilities, since government support is only available in government schools, despite the fact that more

48

Forms of support offered included: payment of school fees; cash, and; the provision of school items. Forms of support were likely to differ based on differences in their support provider. The percentage of HIV households who received educational support in the form of cash for instance, stood at 43 percent, a bit higher than that of non-HIV households, at 34 percent. Since most HIV households received support from family instead of from the government, they were more likely to receive cash assistance compared to non-HIV households who were more likely to receive different modes of support from the goverment, like payment of school fees The average total household expenses for childrens education in general is relatively small compared to expenses for other items or services. For instance, household expenses for cigarettes outstrip that of education. This fact by itself, demonstrates that childrens education is poorly prioritized in participating households, and in the Indonesian populace at large, since the expense structures are similar. In HIV households, educational expenses average around IDR 52,251 compared to non-HIV households, in which education expenses average IDR 82,253. This suggests, education is considered less of a priority in HIV households.

HIV compared to non-HIV households were less financially better off, and were more likely in need of support from the government.

Figure 17. Average and Proportion of Educational Expenses (Rupiah) According to Household Classification
PLWHA Household 82.253 52.251 1.97% Non-PLWHA Household 3.61%

Average Expenses for Education

% Expenses for Education from Total Expenses

49

6. The Impact of HIV on Health

Currently, HIV is considered one of the primary challenges facing the public health system in Indonesia. At the macro level, HIV increases the burden on the Indonesian health care system in coping with chronic diseases. At the household and individual levels, the most visible impact of HIV is the economic burden faced by HIV households in relation to increased healthcare costs. As documented above, since most PLHIV in households are in the economically productive age range, the impacts of HIV include both higher healthcare costs and reduced household incomes. The impact of HIV and AIDS on individuals and households may increase if a spouse or other family member also becomes HIV+, . This chapter describes and discusses the results of the household morbidity study, the incidence of opportunistic infections in individual PLHIV, the type of health services accessed and the cost of treatment. This section will also discuss the frequency of outpatient and inpatient service utilization by PLHIV in HIV households compared to control households.

6.1. Morbidity Levels

6.1.1. Levels of Morbidity of Household Members

The morbidity levels were calculated with reference to data from all household members in the study who were treated either as inpatients or outpatients. In total, data from 3,482 individuals from 996 HIV households, including 1,106 PLHIV, and 3,432 respondents from 996 non-HIV households, was collected in order to determine morbidity levels for this study.

Table 18 below illustrates the number of household members who experienced health problems, or incidences of morbidity, in the last month according to their gender and household classification. It illustrates that there was no significant difference between the morbidity levels of groups aged 0-19 years old and 50 years old and over in HIV and non-HIV households. There was a significant difference however in morbidity levels between HIV and non-HIV households in the 20-49 year old group, in which HIV and AIDS was most prevalent in comparison to other age groups. The percentage of members from HIV households who experienced health problems over a period of one month was far higher than members from non-HIV households regardless of gender, at 32 percent compared to 25 percent for non-HIV households. This demonstrates that a clear correlation exists between HIV and AIDS related morbidity and overall morbidity incidences in households.

50

Table 18. Respondents Who Had Experienced Health Problems Over The Past Month (%) Age Group (Years) 0-14 15-19 20-24 25-49 50+ Total HIV households Male 27 17 35 36 38 Female 26 19 27 31 37 Total 26 18 31 34 38 32 Non-HIV households Male 29 13 18 22 38 Female 22 19 17 26 44 Total 26 16 17 24 41 25

33

30

25

26

As previously explained, incidences of morbidity for household members were determined based on the number of household members who became inpatients and outpatients. Consistent with the findings illustrated in Table 18, in which the morbidity incidences in HIV households are clearly higher than in non-HIV households, Figure 18 below illustrates a similar trend in terms of hospitalization rates, with a higher percentage of members from HIV households hospitalized over a period of a year in comparison to members from non-HIV households. The percentage of hospitalized family members from HIV households (7%) was double to that of non-HIV households (3.5 %). The related economic burden stemming from the associated costs of hospitalization was thus far higher in HIV households compared to that of non-HIV households. Figure 18. Respondents Treated as Outpatients over a Period of a Month and Hospitalized over a Period of a Year (%)

28

PLHIV Household 22

Non-PLHIV Household 25 16 16 7.2 3.3 3.5

% of Respondents

16 8.5 3.7

5.7

Out-patient Hospitalized Out-patient Hospitalized Out-patient Hospitalized Male Female Total

51

The figure above also illustrates that the percentage of household members treated as outpatients was lower for women in HIV households compared to men. This is due to the higher proportion of men PLHIV compared to women PLHIV in this study.

6.1.2. Morbidity Rates for PLHIV

Morbidity rates for PLHIV compared to non-PLHIV family members was significantly larger over the survey period, namely one month. This is illustrated in Figure 19 below. This figure also illustrates that when data from PLHIV is excluded, the percentage of household members who experienced health problems in the last month was relatively similar between HIV and non-HIV households.

Figure 19. Distribution of Illness over the Period of One Month by HIV or Non-HIV Status of Respondent (%) PLHIV Non-PLHIV in PLHIV household Non-PLHIV in Non-PLHIV household 42
% Respondents

41

27

25

27

26

Male

Female

It is for this reason, that this section shall present and analyze the results of PLHIV respondents who experienced health problems. These findings will be grouped according to the length of time respondents have known their HIV-positive status, and the clinical stage of their HIV according to WHO standards. One limitation of this approach is that most respondents became aware of their HIV-positive status only after experiencing an onslaught of opportunistic infections. This indicates that they were already at an advanced stage of the disease and had actually been infected several years earlier. Consequently confirmation of HIV positive status does not automatically indicate the duration of HIV infection.

This study found that the majority of PLHIV, approximately 78 percent of male PLHIV respondents, and 69 percent of female PLHIV respondents, experienced symptoms of opportunistic infections (OIs) characteristic of PLHIV prior to being tested for HIV. The symptoms of opportunistic infections most often experienced by PLHIV prior to HIV testing were: weight loss of greater than ten percent within one month (56 percent); coughing for longer than three weeks (40 percent); followed by inflammation due to
52

The high percentage of respondents reporting symptoms of opportunistic infections prior to their knowledge of being HIV-positive illustrated that the majority of PLHIV respondents had already reached an advanced stage of the disease before being tested for HIV. This had an obvious impact upon the percentage of PLHIV who experienced health problems because delays in detection of HIV cause PLHIV to become more susceptible to opportunistic infections.

fungus in the mouth/throat (37 percent); other symptoms lasting longer than one month (32 percent), and; constant diarrhea lasting longer than one month (30 percent). There were no significant differences between men and women PLHIV respondents in the types of symptoms experienced prior to HIV testing or in the length of time they had known their HIV-positive status.

Overall, the percentage of PLHIV respondents who experienced health problems over a period of one month was higher for people who had discovered their HIV-positive status following symptoms of opportunistic infections (45 percent) compared to respondents who discovered their HIV-positive status prior to experiencing symptoms of opportunistic infections (33 percent). This difference was more significant for women PLHIV, demonstrating that a delayed diagnosis of HIV caused women PLHIV to have a higher probability of experiencing health problems over the survey period, namely one month

Figure 20. PLHIV according to Illness Over a Period of One Month and OIs Symptoms Prior to HIV Test (%)

No OI's sypmtoms prior HIV test OI's sypmtoms prior HIV test 47 44
% PLHIV Respondents

45 33

35 29

Male

Female

Total

The health problems which resulted in inpatient and outpatient treatment for PLHIV respondents were also analyzed based on the clinical stage of HIV infection and the duration in which respondents had been aware of their HIV-positive status. WHO defines four clinical stages of HIV infection based upon the severity and type of symptoms of infection and the ability of PLHIV to conduct daily activities. Stage I applies to PLHIV who experience no health problems and can perform regular daily activities. Stage II applies to PLHIV who experience symptoms such as a reduction of 10 percent body weight within a month and recurrent upper respiratory tract infections but are still able to perform regular daily
53

activities. Stage III applies when PLHIV have the clinical symptoms of stage II accompanied by continuous diarrhea lasting longer than three months or fungal infection of the mouth and cannot perform normal daily activities over fifty percent of the time within a month. Stage IV applies when PLHIV experience the same clinical symptoms of stage III and suffer from one of the following diseases: toxoplasmosis; pneumonia, or; cryptosporidiosis skin cancer that infects the brain. In addition they are bedridden for over fifty percent of the time in one month. Unfortunately these criteria cannot be determined completely from survey questionnaire results. Consequently the classification of PLHIV respondents into HIV infection stages was only derived based on answers to multiple questions within the survey. Based on the answers provided by PLHIV respondents, this study indicates that 34 percent of PLHIV respondents were categorized as stage I, 39 percent as stage II, 21 percent as stage III, and six percent at stage IV. This is illustrated in the table below. The percentage of respondents treated as inpatients within the past year increased according to the higher clinical stage of their HIV, from six percent of stage I respondents to 22 percent of stage IV respondents.

Table 19. Morbidity Rate of PLHIV Over a Period of One Month According to Stage of HIV Infection and Length of Time Since HIV Diagnosis (%)
Male Clinical Stage of HIV Stage I 30 Stage II 41 Stage III 22 Stage IV 6 Total Length of Time Since HIV Diagnosis <= 1 Year 16 1 - 5 Years 70 > 5 Years ago 14 Female Total Inpatient Within the Last Year 6 13 16 22 12 17 11 13 Outpatient Within the Last Year 30 43 48 43 40 38 40 43

41 34 19 6 23 70 6

34 39 21 6 18 70 12

Table 19 also illustrates the percentage of PLHIV respondents according to the length of time since their HIV diagnosis. The majority of both male and female PLHIV respondents had been diagnosed with HIV for 1-5 years (70 percent) whereas the percentage of male PLHIV respondents who been diagnosed with HIV for over 5 years (14 percent) was higher than for female PLHIV respondents (6 percent).

The data from this study also indicates that the length of time since HIV diagnosis was not directly related to incidences of hospitalization. Respondents who had been diagnosed in the last year were the group with the highest percentage of hospitalization rates over the last year. It is possible that this was due to the fact that they had actually been infected with HIV several years prior to diagnosis.

54

6.2. Health Facilities and the Cost of Treatment

Generally the type of health facilities used to obtain treatment depends heavily on accessibility in terms of cost, time, location, the type and urgency of the illness, and financial capacity of people in seeking health care.

An analysis of the 2009 SDGK survey data illustrates that hospitals were the most frequently accessed source of health care by HIV households who had experienced health problems over a period of one month (41%). Health clinics however were the most frequently accessed source of health care by nonHIV households (32%). Consequently HIV households were further burdened as health clinics are generally easier to access, cheaper, and have simpler administrative and bureaucratic systems compared to that of hospitals.

Figure 21. Respondents Experiencing Health Problems Over the Period of One Month By Type of Health Facilities Accessed (%)

The high number of HIV household members who accessed outpatient services at hospitals resulted in a higher financial burden for HIV households compared to non-HIV households. This can be seen in Table 20 which illustrates the average cost of outpatient treatment in HIV households to be five times greater than that of non-HIV households. The breakdown of costs was also vastly different between the two types of households. The highest expenditure for HIV households was for transportation, whereas for non-HIV households the highest expenditure was for the purchase of pharmaceuticals. The second highest expenditure for HIV households was for administrative fees and patient examinations including laboratory tests and x-rays.

55

Table 20. Average Outpatient Expenditure According to Type of Costs Type of Cost Transportation Examination Medicine Other HIV Households IDR % 359,143 39% 138,053 15% 177,715 19% 244,358 27% Non-HIV Households IDR % 13,321 43,642 79,642 35,454 25% 46% 21% 8%

Total

919,269

172,059

6.3. VCT, CD4 Testing, and ARV

In order to improve the quality of life of PLHIV and to assist in the prevention of HIV transmission, the Ministry of Health, in collaboration with various stakeholders, have attempted to increase the early detection of HIV by providing hundreds of Voluntary Counseling and Testing (VCT) services throughout various regions. In addition, a number of referral hospitals are also equipped with facilities to conduct CD4 tests, laboratory tests to determine the clinical stage of HIV infection and the impact of Antiretroviral (ARV) therapy. ARV drugs, which inhibit the progression of HIV and improve the quality of life of PLHIV, are available in almost all provinces of Indonesia. Almost 90 percent of PLHIV respondents claimed to have discovered their HIV status via VCT services and there was also a significant increase in the percentage of HIV diagnoses that occurred via VCT services from 73 percent of PLHIV respondents who were diagnosed with HIV over five years ago to over 90 percent of PLHIV who were diagnosed with HIV within the last five years. This indirectly illustrated the increased coverage of VCT services in Indonesia as a whole. The percentage of PLHIV who were taking ARV also increased in line with the average length of time PLHIV had been aware of their HIV status. Table 21. The Percentage of PLHIV Who Received VCT, CD4 Testing, and ARV Treatment

Confirmed as HIV+ <= 1 Year Ago 1 - 5 Years Ago > 5 Years Ago Total

HIV Diagnosis from VCT

CD4 Test Within the Last Year

Currently Consuming ART

90 91 89 73

61 48 49 38

33 57 54 63

56

Approximately 27 percent of male PLHIV respondents and 18 percent of female PLHIV respondents (total of 24 percent), claimed to have at least one time ceased taking ARV due to various reasons. When the survey was conducted, 5 percent of male PLHIV and 9 percent of female PLHIV (total of 6 percent) had not resumed ARV therapy.

A total of 49 percent of PLHIV respondents claimed to have undergone CD4 testing to monitor the clinical stage of HIV within the past year and the average frequency of testing was twice a year. There were no significant differences between male and female PLHIV or between PLHIV with different clinical stages of HIV in regards to CD4 testing in the past year.

6.4. Mortality Rates

Due to the limited number of households in the sample, the analysis of mortality rates in this section did not use indicators such as the Crude Death Rate or Infant Mortality Rate. Rather, two simple indicators were utilized: 1. The percentage of households that experienced the death of a household member in the last five years, and; 2. The mortality ratio compared to the number of respondents still living with a constant of 100.

High or low levels of population mortality in a region do not only affect the growth of the population but also indicate high and low degrees of public health in the region. As such, mortality rates are an important indicator affecting behavior patterns within households, particularly health behavior patterns.

The type and number of residents in a certain area is influenced by three demographic components, namely births, deaths, and migration. Births (live births) are a positive influential that increase the population. In contrast, deaths are a negative influential that reduce the population. Migration can be a positive or negative influential depending on the prevailing situation.

As illustrated in Figure 22, the percentage of HIV households that experienced the death of a household member (14.8 percent) was far higher than in non-HIV households (4.6 percent). The mortality ratio in HIV households was 4.9 indicating that for every 100 HIV household members, almost 5 died. This was a far higher mortality ratio than for non-HIV households which was only 1.4.

195 households, or 9.7 percent of 1,992 households, experienced the death of a household member within the last five years. Approximately 8.3 percent experienced one incidence of death and 1.4 percent experienced two incidences of death.

Figure 22. Mortality Rate over the Last Five Years

57

HIV Household 12.4 % of Households 8.3 4.3

Non-HIV Household

Total

2.4 0.3 1 Death > 1 Deaths

1.4

58

7. Stigma, Discrimination,
and Knowledge of HIV
7.1. Stigma and Discrimination
Indonesian culture retains traditional values including a belief in the law of karma, in which people are perceived to be rewarded or punished based on past deeds. Such traditional values influence certain members of society to believe that PLHIV are to blame for their status, and that the law of karma is at work. Such views unfortunately create stigma that leads to discriminatory attitudes towards others. UNAIDS defines stigma and discrimination associated with HIV as negative attitudes towards others resulting in unjust and unfair treatment of people based on their HIV status.

The study encompassed 966 HIV households across seven provinces. From these households there were 1106 PLHIV and 45 people who had died from HIV and AIDS related causes over a five year period. Of the 1106 PLHIV, 16 percent lived alone and the remaining 935 people lived with their families. This chapter discusses the realities of stigma and discrimination against PLHIV.

Stigma and discrimination experienced by PLHIV may have various sources within the community. It may begin in the family, neighborhood, workplace, school, or other community environment. Additionally, PLHIV have had to struggle to secure fair treatment and access to health service facilities, since they often face discrimination from health service providers. Finally, stigma does not only originate from others, but also from how PLHIV regard themselves.

There are two important issues which must be considered when determining whether stigma and discrimination against PLHIV exists. First, anyone accused of stigma or discrimination must be aware that a person is indeed a PLHIV. Secondly, the stigmatic or discriminatory action must be due to a persons HIV status and not due to other factors. Stigma and discrimination can also arise from fear caused by misunderstanding and a lack of knowledge about HIV and modes of transmission.

7.1.1. Stigma within the Household

Overall, 27 percent of HIV households were unaware that a member of the household was a PLHIV. This demonstrated that a high proportion of PLHIV were afraid or unprepared to share their HIV status. Although as many as 41 percent of PLHIV respondents told their families immediately following their HIV diagnosis, a higher proportion of men (43%) than women (38%) immediately disclosed their HIV status to families. A total of 12 percent of PLHIV respondents informed their families of their HIV status within a year of diagnosis and a further nine percent informed their families after more than a year. A total of nine percent of PLHIV respondents claimed their families knew about their HIV status prior to them, and 19 percent of respondents had not told their family. Of those who had not informed their families of their

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HIV status, a higher proportion were female (22%) than male (18%), with 32 percent of PLHIV did not disclose their status to their spouse/partner.

Figure 23. Rate of Disclosure of HIV Status to Family (%) Stay Alone Not informed family until now Family know earlier After 1 year Within a year Immediately after diagnosed % of PLHIV Respondents
The reluctance of some PLHIV to disclose their HIV status to their family was based on a perceived fear of rejection, that their HIV status could bring shame upon their family. The majority of cases of discrimination however occurred due to a lack of sufficient knowledge by those perpetrating the discrimination. When PLHIV who had disclosed their HIV status to their family were asked about the initial reaction of the household head or the spouse/partner to the news, they claimed that 65 percent were accepting, 10 percent provided additional attention to the PLHIV, and 12 percent were empathetic. Only 12 percent had negative reactions ranging from rejecting the news or expressing disappointment (59 households), ignoring the news (10 households), breaking it off with their spouse/partner (11 households), insulting the PLHIV, and refusing to provide for, or expelling the PLHIV from the household (2 households).

13 9 22 18 10 9 8 9 9 12

Female

Male

38 43

Family members initial reactions were generally positive, which could be attributable to acceptance and/or knowledge of the lifestyle choices by PLHIV. Studies have found that the majority of HIV and AIDS cases in Indonesia are found in MSM or commercial sexual and injecting drug user (IDU) populations. If households know that members engage in drug use or are sexually active, they may be more likely to predict that HIV may result from such activities. The reactions of household heads and partners are illustrated in Figures 24 and 25.

Figure 24. The Percentage of Households According to the Initial Reactions of Household Heads/Partners When Informed of A Household Members HIV Status

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Figure 25. The Percentage of Households According to The Reaction of Household Heads/Partners Regarding a Household Members HIV Status at the Time of Study

The positive attitudes present in a high percentage of HIV households should indicate that PLHIV do not receive discriminatory treatment in their home environment. Survey data however indicates that 12

Over time, HIV households tended to develop more tolerant views of members of the household who are living with HIV. In addition to the time factor, increased knowledge of HIV and AIDS certainly led to a more positive attitude change in households towards PLHIV. When the PLHIV whose HIV status was known in households were asked about the attitude of the household head or partner regarding PLHIV at the time of the study, 94 percent were positive (more caring, empathetic, and accepting of the fact). Of the 12 percent of households that had initially reacted negatively, only 4 percent still held negative attitudes towards PLHIV within their households.

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percent of households had separate food and drinking utensils from the PLHIV, which means that discrimination still occurs.

The existence of PLHIV within the household also has undeniable impacts upon the household. When the 708 households aware of having a PLHIV member were asked what the most significant impact had been, 37 percent claimed that the most significant impact to the household was the psychological burden, 25 percent cited economic burdens, 5 percent cited changes in the family structure, and 3 percent cited threats to the continuity of childrens education. A total of 30 percent of those surveyed however, claimed that the existence of a PLHIV in the household had no impact.

Table 22. Household Opinions about the Most Significant Impact of HIV and AIDS (%)
Most significant impact Change in family structure Psychological burden Economic burden Threat to continuation of childrens education None Length of time since HIV diagnosis <= 1 Year 39 17 33 4 7 1-5 Years 35 23 33 5 4 >5 Years 49 18 27 0 5 Total 5 4

38 22 32

Becoming HIV+ may have a broad impact on various aspects of peoples lives. One such example relates to marriage. Although it is certain that almost all PLHIV still have the desire to marry, excessive anxiety due to their HIV status causes fear that prevents them from often realizing this desire. When the 536 unmarried PLHIV respondents were asked about their desire to marry, 64 percent expressed a desire to marry whereas 36 percent said they did not. When this question was posed to one respondent using the qualitative methodology, they stated: What parents would want to marry their child to a PLHIV?

7.1.2. Stigma and Discrimination in Neighborhoods and Schools

As previously stated, any claim of discrimination against PLHIV must be viewed objectively to avoid bias within the analysis. For example, when considering discrimination in the neighborhood it must first be ascertained whether the neighbors know the HIV status of the PLHIV within target households. This survey, involving 996 HIV households in 7 provinces, found that only 163 households (16 percent) could confirm that their neighbors knew that there was a PLHIV in the household.

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Figure 26. The Percentage of HIV households According to Whether Neighbors Know there is a PLHIV in the Household

Neighbour knew

Neighbour do not know

PLHIV unsure

Total

16

77

Female

20

74

Male

15

79 % PLHIV Households

When the 163 households were asked whether they had experienced discriminatory treatment from their neighbors, the majority claimed to have never experienced discrimination from their neighbors. Only 58 households (36%) claimed to have experienced discrimination from their neighbors.

From the 58 households that had experienced discrimination from their neighbors, the type of discrimination most frequently encountered was avoidance by neighbors (34 households), followed by verbal abuse (31 households), and the prohibition of the households children from playing with neighbor children (22 households). Additionally, 15 households claimed that neighbors are no longer willing to lend them anything. A total of 7 households encountered some form of physical violence. Of households that owned small shops, 12 claimed that the number of customers had fallen. A profile of the kinds of discrimination that occurred within neighborhoods can be seen in Table 23.

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Table 23. The Percentage of HIV households that Experienced Discrimination within the

Neighborhood According to the Gender of the Head of Household

Male 18 19 11 8 7 6 6 6 4 3 Female 28 20 20 12 12 12 10 10 4 4

Type of Discrimination from Neighbors Avoidance Verbal abuse Children prohibited from playing together No longer lending anything Do not want to meet Socially boycotted Physical abuse No accepted in the community

Total 21 19 14 9 9 8 7 7 4 3

Number of customers dropped

Restricted from using the public well

The SDGK09-M questionnaire accommodated the possibility of discriminatory treatment occurring in the school environment. Of the 996 HIV households included in the study, 316 contained members who were still attending school. Of these, only five households stated that the school knew that there was a PLHIV in the household. Of these five households however, only one household claimed that discrimination occurred at school.

7.1.3. Stigma and Discrimination in Health Care Facilities

Although health care institutions should provide care and support, they can be the first place that PLHIV experience stigma and discrimination. This discrimination may include poor levels of health care, refusal to care or treatment, isolation, labeling or otherwise identifying someone as HIV positive, breaches of confidentiality, the use of negative language or body language by health care staff, and/or a limitation in access to health care facilities. In relation to this issue, as of 2008, 3 of the 7 provinces included in this study had local regulations specifically aimed at overcoming HIV and AIDS related problems, namely the Special Region of Jakarta, Bali, and East Nusa Tenggara. The aforementioned regulations stipulate the provision of discriminatory free health care facilities for PLHIV. For instance, Article 17 of the Jakarta Provincial Regulation No. 5/2008 on HIV and AIDS clearly states that: Every health care provider must provide services to all people in need without discrimination and must maintain the confidentiality of data regarding PLHIV. The survey found nonetheless that there was still discrimination occurring in health care facilities in which PLHIV respondents claimed to have received differential treatment due to their HIV status. A total of 57 percent of PLHIV overall, including 59 percent of male PLHIV respondents and 53 percent of female PLHIV respondents, reported experiencing discrimination in health care facilities. The percentage

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of PLHIV who reported experiencing discrimination in health care facilities, based on gender and the types of discrimination encountered, are illustrated in Table 27 below. Table 24. PLHIV Who Experienced Discrimination in Health Care Facilities according to

the Type of Discrimination Encountered and their Gender (%)

Male 41 12 11 9 9 7 7 5 4 2 1
1

Type of Discrimination Encountered at Health Care Facilities Use of a special code Excessive use of protective measures Provision of incorrect information regarding HIV Refused medical treatment Health care workers did not want to touch them Isolated Were the last to be treated Received verbal abuse Were denied access to public rooms Were denied access to toilets Received physical abuse

Female 40 7 9 7 4 6 5 4 2 2 1
1

Total 41 11 10 8 8 7 6 5 3 2 1
1

Were denied access to eating utensils

Discrimination in health care facilities affected HIV households, especially PLHIV members of the household. Discrimination was perpetrated, not only by health workers, but also by other patients utilising health care facilities. Although this discrimination was infrequent and unevenly distributed across study areas, the study found that of 426 HIV households in which the HIV positive status of a member was disclosed to patients, 14 percent experienced discrimination from other patients in health facilities.

Figure 27. The Number of Households That Experienced Discrimination from Other Patients in Health Care Facilities

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7.2. Knowledge and Understanding of HIV

Comprehensive knowledge regarding HIV transmission and prevention is defined by UNAIDS as one indicator of the Declaration of Commitment, as articulated during the United Nations General Assembly Special Session on HIV/AIDS 2001. This knowledge includes an understanding of the following concepts: (1) That HIV can be prevented by being faithful to ones partner; (2) that condoms can be used to prevent the transmission of HIV; (3) that HIV cannot be transmitted via mosquitoes; (4) that HIV cannot be transmitted via eating together or sharing eating or drinking utensils, and; (5) that a person who looks healthy may have been infected with HIV. If a person can answer questions regarding these five concepts correctly then they are categorized as fully understanding the modes of HIV transmission and prevention. The results of the SDGK survey in 2009 found that a comprehensive knowledge of HIV and AIDS was still low in respondents (8 %) and that there was no difference between HIV households and non-HIV households. Such a low level of comprehensive knowledge of HIV and AIDS could increase the likelihood of stigma towards HIV households and families. However, overall knowledge levels were very high, with the exception of knowing that someone who appears healthy may be infected with HIV. (14%). A poor level of knowledge on this one issue significantly reduced the overall score.

Table 25. Knowledge Regarding HIV Transmission Modes by Head of Households According to Household Classification (%)
Knowledge Knowledge that being faithful to one partner can protect against HIV transmission Knowledge that using a condom can protect against HIV transmission Knowledge that someone who appears healthy may be infected with HIV Knowledge that mosquitoes cannot transmit HIV Knowledge that sharing eating utensils with a PLHIV cannot transmit HIV Knowledge that HIV can be transferred from mother to child Knowledge that sharing injecting equipment can transmit HIV HIV households 92 86 13 74 73 79 84 Non-HIV households 91 82 15 77 77 77 90 Total 92 86 14 75 74 79 85

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8. Women and HIV

The annual report published by the Joint United Nations Programme on HIV-AIDS (UNAIDS), the AIDS Epidemic Update 2004, mentions that the three methods of HIV prevention known as ABC (abstinence, being faithful, and condom usage) is not sufficient to prevent HIV transmission to women. This is because, in many places in the world, HIV infection in women is not caused solely by ignorance or misunderstanding about HIV prevention. Rather HIV infection occurs due to lack of social and economic power by women to protect themselves. Consequently, as long as women lack negotiating power with their partners regarding condom use or refusal to have sex (saying no), HIV infections will continue to occur unhindered (Suara Pembaruan 2004). Over the past 20 years, the number of women infected with HIV has risen to almost half of the total number of PLHIV worldwide. In Indonesia, the number of HIV-infected women is continuing to rise. . On 31 December 2005 the ratio of AIDS cases among women and men was 1:4 however by 30 June 2010, the ratio had risen to nearly 1:3 (Ministry of Health 2005 and 2010).

According to the World Health Organisation (WHO), women in developing countries are in a precarious position since unprotected sex is a health risk which can result in an increased risk of HIV and other sexually transmitted infections (STIs). As Dr Evy Yunihastuti noted, during a focus group discussion on AIDS in the Faculty of Medicine at the University of Indonesia (FKUI/RSCM), women are more easily infected by HIV than men for biological reasons. This is because the mucosal surfaces exposed during sex are larger in women (vagina, cervix and uterus) compared to men, women are exposed to more fluid (semen) than men are exposed to vaginal fluids, and the semen remains in womens bodies after intercourse. Semen also carries more of the HIV virus than vaginal fluids. The risk of transmission is highest in anal sex, followed by vaginal sex, then oral sex (Suara Pembaruan 2004).

The results of the SDGK 2009 survey as discussed in previous chapters, found that 30 percent of PLHIV respondents were women and that women PLHIV experienced more intensive discrimination from various sources compared to men PLHIV. In addition, more girls in HIV households dropped out of school than boys (although numbers remain very small). These results highlight the greater impact of HIV on women than men.

In addition, sociocultural factors come into play, with women often relegated the role as subordinate citizens (Djauzi 2009). In sexual relations, men tend to play a dominant role in determining when and how sexual activity occurs. The result is that women are more prone to sexual violence, including sexual assault or rape. This is exacerbated by womens relatively weak social and economic position vis--vis men. According to Indonesian NGO activists, womens economic dependence on men means that many women chose to stay in a relationship despite facing risks, including the risk of HIV infection, due to economic dependencies.

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8.1. Womens Traditional Role as Carers

In Indonesia, most women are relegated traditional duties within the home including cooking, cleaning, raising children, and assuming a caretaker role for ill family members. The burden placed on women in terms of domestic duties, become increasingly difficult to bear, when the male head of the household as the traditional breadwinner or wage earner contracts HIV and falls ill or dies and can no longer fulfill his traditional duty as financial provider. Under such circumstances, women are doubly burdened, since they are compelled to conduct both domestic duties and to secure an income to support the household financially. Since female headed households are more commonly found in HIV households (25%) compared to non-HIV households (15%), it is apparent that women are increasingly faced with such realities. Data from the SDGK survey also indicates that the majority of PLHIV (70% or 779 respondents) claim to have been cared for by another family member when experiencing health problems. In these cases, 75 percent of the caretakers were identified as female. Of the 577 women in HIV households who cared for a PLHIV, 79 respondents (14%) were also HIV positive themselves. This means that women are compelled not only to care for themselves, but also to care for other PLHIV family members, and may even have to assume the role as primary breadwinner.

8.2. Pregnancy and Childbirth for Female PLHIV

HIV can be transmitted from HIV-infected mothers to babies. Without preventative efforts approximately 30 percent of infants of HIV-infected mothers become infected with HIV. Mothers with high viral loads are more likely to transmit HIV to their babies, but there is no amount of viral load that is considered safe. Infection usually occurs during labor as a result of newborns being exposed to their mothers blood. A baby is more likely to become infected during a prolonged delivery. Drinking breast milk from an infected mother can also cause HIV to be transmitted to a baby. Based on the results of the SDGK09 study, a number of findings regarding pregnancy and childbirth of married female PLHIV are illustrated in the figures below.

A total of 267 married female PLHIV were included in the study. Married women were defined as women who were currently or previously had been married (divorcees/widows). Of these 267 women, 106, or 40 percent, had been pregnant. Of these respondents, 99 women, or 37 percent gave birth and 7 did not. 14 percent of women who were pregnant did not have any medical examinations during their pregnancy for various reasons including cost, and the stigma and discrimination experienced by women in accessing health services (Djauzi 2009). These findings were supported by the survey results which found that of the 98 female PLHIV respondents who were pregnant and had medical examinations, only 59 respondents, or 59 percent informed medical staff of their HIV status, whereas the remainder did not inform medical staff of their HIV status. This is significant, because if women had disclosed their HIV status to health care workers they would have received information about the risks of HIV transmission from mother to child and also about methods designed to prevent such a transmission. The 47 female PLHIV respondents who disclosed their status to healthcare personnel during medical examinations did receive this information.

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Figure 28. Married Female PLHIV According to their Pregnancy and Childbirth History after HIV-diagnosis Ever pregnant Ever give birth Currently pregnant 58
% Female PLHIV who are/have been married

47 42 40 40 37

25

25 11 5 5

<= 1 Year

1 - 5 Years

> 5 Years

Total

Length of time since HIV-diagnosis

Knowledge and awareness of women PLHIV respondents regarding the risks of HIV transmission to the fetus/infant and the preventative methods used to protect the fetus/baby can be seen from a number of aspects including the use of ARV during pregnancy and giving birth via caesarian. The results of the SDGK survey found that only 47 of 114 women PLHIV respondents who had been pregnant, or 41 percent, had routinely used ARV during pregnancy although almost all decided to give birth. Only 40 percent gave birth via caesarian.

Of the 77 female PLHIV who gave birth following HIV diagnosis, 14 respondents, or 18 percent, claimed to know that the baby was also infected with HIV, and more than a third (26 respondents) claimed they did not know the HIV status of their infants. This situation is alarming considering the number of women PLHIV in Indonesia is rising.

8.3. Female PLHIV and their Partners

Gender inequalities experienced by women result in a situation where it is not considered necessary for women to know their rights, including their sexual and reproductive rights, or their vulnerability to HIV. The view that good women and housewives will not be infected with HIV, combined with strong resistance to campaigns for condom use and a view that contraception is the responsibility of women, has further complicated HIV and AIDS efforts. HIV and AIDS is viewed as a problem that only affects those who engage in deviant sexual practices or immoral and sinful behavior. In labeling PLHIV in this way, the problem has been exacerbated.

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The number of women infected with HIV and AIDS is increasing. This is firstly due to the increased sexual transmission of HIV in Indonesia. Then, women often have a weaker bargaining positon of women relative to men, and assuredness in the sanctity of marriage as protection against HIV, with many housewives believing they are safe from HIV because they are married and faithful to a single partner. Furthermore, some Indonesian women harbor the belief that HIV and AIDS is a disease which only affects white foreigners. Lack of knowledge about modes of HIV transmission, methods for prevention or treatment, and the characteristics of PLHIV, all place Indonesian women at greater risk of HIV (Istianti 2003, Taufiq 2009).

Figure 29. Married Female PLHIV according to their Relationship with their Husband (%) Can refuse sex with husband Ask husband to use condom Still living with husband Husband was infected first Husband still alive Husband HIV + Ever married % Female PLHIV
The results of this study illustrate that 80 percent of female PLHIV respondents were or had previously been married. A total of 56 percent said that their husband was also infected with HIV and the majority knew that their husband was infected before they were. This indicates that 46 percent of female PLHIV may have contracted HIV from their husbands and almost all of them continued to live with their husbands. In relation to sex, only a small proportion of married/previously married female PLHIV surveyed said they had requested their husband use condoms during sexual intercourse, with over 80 percent of respondents reporting that their husbands had adhered to such requests. Female PLHIV respondents were generally do not refuse sexual advances by their husband. Approximately 29 percent of respondents claimed that they had refused sex and of these 11 percent claimed that they had experienced physical violence from their husband as a result of refusing to have sex.

23 24 45 46 56 56 80

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9.

Coping Mechanisms & External Support

9.1. Coping Mechanisms

Among the PLHIV households, HIV infection often has had an adverse impact on household financial status, since additional expenditures are incurred. In some provinces, the local government, the private and non-government sectors, cover peoples medical expenses or provide support, but PLHIV and PLHIV households still need to cover expenses like transportation, food and accommodation which are linked to the medical treatment. In addition, absenteeism and losses in employment due to factors related to HIV spell a loss in household income. As outlined above, data from the 996 HIV households for this study, shows that in 74 percent of cases, there is a correlation between the HIV status of a family member and increases in household expenditure or some reduction in income. The economic impact wrought on HIV households in the lower 20 percent quartile, characterized by the lowest monthly per capita income, was greater than in high income HIV households. Additional expenditures incurred and reductions in income were even more prevalent in female-headed HIV households, as documented in Figure 30 below, with 78 percent of HIV female-headed households incurring additional expenditures or reductions in income, compared to 73 percent of HIV male-headed households.

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Figure 30. HIV Households Affected by Expenditure and Income Related Problems according to Monthly per Capita Income Group and Sex of Head of Household

In some cases, when somebody within the HIV household needs medication, the household is unable to cover the costs of the medical fee. The SDGK09 survey reveals survival mechanisms among HIV households without support from the government, such as affilitation to social organizations and access to health insurance, in the event that health-related problems arise for PLHIV family members. In order to address such financial problems, most HIV households used their savings (64 percent or 471 households), requested loans from family or friends (60 percent or 447 households), and asked for support from NGOs (57 percent or 423 households). There were 21 households however, who sought to address such financial problems by encouraging their children to work (3%), and 10 households who requested their children drop out of school (1%).

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Table 26. Efforts Taken by Households to find Solutions to Financial Problems Identified by Income Quintile and Sex of Head of Household

A study conducted on the impact of HIV and AIDS in China demonstrates that households with stronger economic positions responded better to financial problems. High income households tended to use their savings during such financial difficulties whilst those with low incomes usually borrowed from relatives and friends. High income households also had greater opportunities to secure loans due to a stronger credit rating, and due to better access and knowledge of NGOs. Poor households in comparison, were dependent upon other people during such financial difficulties. If external support is unavailable, these poor households will face even greater difficulties and may fall further below the poverty line.

9.2. Migration

As discussed previously, mobility of people is one demographic component which influences population growth in one particular location. Migration of people is one such example of mobility of people. Such migration could happen within the same or different administrative area such as a village/sub district, district/city, province or country. When discussing HIV, migration may be utilised by HIV households as a coping mechanism in relation to HIV-related issues.

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Figure 31. HIV Households Who Have Migrated According to Sex of Household Head (%)

9.3. External Support

9.3.1.

In general, 33 percent of HIV households have moved house, with higher migration levels found in HIV female headed households. Reasons for engaging in migration, included for employment reasons (14 percent), to find a cheaper rented house (13 percent), compulsion to leave the neighborhood (5 percent) and fear of HIV transmission to others (3 percent).

Sources and Types of Support

Out of 996 HIV households who become respondents in this study, only 28 percent of them sought external support after discovering that one of their family members was HIV-positive. Despite this, HIV households receiving support amounted to 590 or about 59 percent. This means however, that 41 percent of HIV households have never received any external assistance or support.
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There is a dire need for PLHIV and their households to receive government and non-government forms of external support and assistance. Government support may come from the central or local government, whilst non-government support may come from NGOs or individuals. Support may take the form of materials like funds, medical supplies, staples food, and so on, or non-material support like counseling, and care. Government material support in 2008 for instance, included the allocation of IDR 40 Billion worth of free ARVs, under the Ministry of Health (Kompas, 29 August 2008).

One impact of HIV relates to the devastation it causes to the bodys immune system, with greater susceptibility to infections for PLHIV and therefore greater incidences in which treatment must occur. The greater the incidences of medical treatments, the greater the need there is for access to money. As documented throughout this report, the economic impact of HIV in terms of household income, arises due to high levels of absenteeism in ill PLHIV or their caretakers. In terms of household expenditure, the high cost of medical treatment and other medical expenses, means funds are often diverted from other budget items and the family falls further below the poverty line.

Figure 32. HIV Households who Have Actively Sought or Received Support According to Monthly per Capita Income Quintile

The percentage of HIV households who have sought external support and assistance generally becomes smaller as their income rises. This is illustrated in Figure 32, which documents the percentage of low monthly per capita income of HIV households actively seeking support, which stands 37 percent higher than that of high monthly per capita income groups. Out of the 996 HIV household study respondents in this survey, 36 percent had previously received support from the government, while the other 37 percent had received assistance from non-government bodies or actors. More government support is concentrated in HIV household respondents in the lowest monthly per capita income quintile with 1/5 households receiving support, in contrast to other quintiles in which support from NGOs was widely scattered across all HIV households.

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Table 27. Sources, Types and Support Offered to HIV Households according to Monthly per Capita Income Quintiles
5 Quintiles of Monthly per Capita Income

20% Lowest
Sources of support Government NGO Work Neighbor Type of Support Food Capital Job/Employment Medicine Information Others Nature of Support Loan Fee discount Free of charge Health assurance Others 45 35 2 3 5 3

20% 2nd
35 36 2 1 6 3

20% 3rd
34 37 3 2 7 3

20% 4th
34 37 4 2 4 5

20% Highest
34 37 1 0 5 2

Total

36 37 2 2 5 3

25 36 11 18 3 5

16 34 11 13 1 7 5 6

15 34 14 12 3 6 5 9

19 31 12 17 3 5 7 7

12 33 12 14 1 5 6 7

16 33 12 15 2 6 7 8

50 13 11

53

46

53

49

50

The percentage of households according to the type of support they received is presented in Table 27. The table demonstrates that the biggest proportion of support received by HIV households from government and non-government sources assumes the form of medicine. A total of 33 percent of HIV households have received support in the form of medicines and 16 percent of similar households have received support in another form.

There are various types of support accepted by HIV household respondents, including an acceptance of goods and services free of charge as well as loans. Table 27 also shows the percentage of HIV households receiving support based on the nature of support, with most respondents (50% or 1 in 2 HIV households) receiving such support free of charge. Based on support type, it is apparent that such free support is usually offered by non-government providers (81%) compared to government providers (74%). In contrast, the proportion of health assurance provisions supplied by the government is far higher than that of non-government bodies and actors, at 14 percent and 1 percent respectively.

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Differences in support distribution are apparent when comparing sources of support from government and non-government parties, particularly in the provision of medicines. A total of 63 percent of households are currently receiving government support for medicines. In comparison, non-government support were varied for HIV households, and included medicine, food and others. Households receiving medicine support are higher represented than other support types. This is because the reduction of the PLHIV immune system has caused PLHIV to easily get opportunistic infections, with the result that good access to medicines are needed. If no assistance from an external party or institution to these HIV households in such areas are forthcoming, the possible impact may be a reduction in the economic wellbeing of such households.

Figure 33. HIV Households According to Sources of Support and Support Types (%)

Workplace NGO Government

9.3.2.

Benefits and Need for Support

Almost all (99%) HIV households said that external support received was useful. Medicine and employment were deemed highly beneficial compared to other modes of support, with 83 percent of PLHIV expressing appreciation to better access to medicines, and 79 percent expressing appreciation in terms of improved access to employment. With regards to the former, it must be remembered that although PLHIV are at increased vulnerability to opportunistic infections, most of these infections are curable, and even preventable, although all HIV-related medicines are expensive. For example, according to Murni, S and friends (2008) in January 2003, the price of three generic ARV medicines combined amounted to IDR 650,000 per month. ARV prices are falling however. Suara Pembaruan reported information from Kimia Farma Director (29 November 2008), which stated that PLHIV in need of the first line of ARV by the end of 2008 will need IDR 80,000 - 200,000 per month. For the second ARV, more funds are needed, between IDR 300,000 - IDR 1 million. The price of ARV treatment is expensive to almost all HIV households.

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Currently, ARV are free for PLHIV because a significant level of government and foreign donor funds are directed towards the purchasing of this medicine. As outlined above, the Ministry of Health allocated IDR 40 billion to provide free ARV in 2008 alone (Kompas, 29 August 2008). This means the economic burden of HIV households are not further undermined by this further expense. GFATM funds for ART is currently guaranteed to 2014.

Table 28. Households Receiving Assistance Based on Support Type and Benefits (%) Support Type Food Capital Employment Medicine Information Others Total Benefit Fairly Useful 6 13 11 3 10 2 5

Very Useful 69 68 79 83 60 76

Useful 23 18 11 13 29 22

Less Useful 0.9 0.7 0.5

Not Useful 0.9 0.4 0.3

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18

Although the cost of ARV treatment may be covered, PLHIV also need access to other medicines, proteins, and so on. These added expenses mean PLHIV need sustainable sources of income. Extending greater employment opportunities to PLHIV households is one means of securing such an outcome, and it is one which is supported by Head of Households, as outlined below.. There are two major modes of supports that are significantly needed, namely medicine and capital and employment. Out of 996 HIV households, 35 percent of households still expect to obtain medicine, whilst 34 percent wanted to secure future capital and an additionale 21 percent wanted future employment.

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Figure 34. HIV Households According to Type of Support Needed and Sex of Head of Households (%)

High expectations from HIV female headed households in terms of access to capital indicates that PLHIV have a strong desire to create a new business or further develop an existing business rather than become employees. In previous chapters, HIV households indicated a preference for working in more informal sectors.

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10. Conclusions &

10.1.Conclusions

Recommendations

The macro level economic impact of HIV is not too big, since HIV only reduces the net income of HIV households by 7 percent in comparison to what they would normally receive a month. With the national HIV prevalence rates still low, the extrapolation impact on the nations economy is not expected to be significantly harmful. The household level impact however, is dire, as documented in this report.

HIV infection is more common in male respondents of a productive age, with the result that their productivity and income power is eroded, and PLHIV household structures undergo some radical changes. For instance, this study documents the increasing proportion of working children and school drop outs , and the greater numbers of women assuming roles as primary wage earners/breadwinners and heads of households.

Stigma and discrimination were found to be serious problems which need to be followed up immediately since it often results in a failure by PLHIVs to disclose their HIV status to health service providers, the community, their families and their life partners. This has hindered access to proper services and assistance by such PLHIV. The main causes of stigma and discrimination were found to be a lack of comprehensive knowledge about HIV. Despite this, the study found that most respondents had received positive support from their families, even though many PLHIV were still distriminated against even by them, with discrimination within families more prevalent for female PLHIV compared to male PLHIV. Some discrimination was also apparent within the community, although most stigma and discrimination was experienced by respondents at the hands of health service providers and patients.

The results of this study generally concluded that although the macro impact of the HIV epidemic is not too big, at the household level, its impact is alarming. The impact of HIV is felt in terms of income, in terms of employment, and in terms of expenditure, in relation to childrens education, medical treatment and household savings. HIV households from poor economic backgrounds, and HIV female headed households, particularly felt the most severe impact of HIV and AIDS.

This study utilises data collected directly from 996 PLHIV households (the target group) and 996 nonPLHIV households (the control group). The sample is spread across 13 cities in 7 provinces with different levels of HIV prevalences to determine the impact of HIV and AIDS on households. Due to a lack of data and sampling frameworks, this study used quota sampling, and cannot be considered statistically representative of PLHIV households in Indonesia.

The biggest difference in consumption expenditure patterns between HIV and non-HIV household is in the area of health, which is 4.6 times bigger in HIV households compared to monthly per capita expenditures in non-HIV households. A combination of declining revenues and increasing expenditures
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especially for health care has affected savings and household assets for HIV households. This study found that 54 percent of respondents from HIV households have depleted their savings or were forced to sell household assets to cope with the costs incurred as a result of one of its family member becoming infected with HIV.

Morbidity rates derived from outpatient and inpatient levels was much higher in HIV households compared to non-HIV households. As a result, greater monthly expenditure was incurred in terms of healthcare in HIV households, with expenditure 4.6 times higher compared to that of non-HIV households. Most HIV households tended to access hospital outpatient services, whereas non-HIV households tended to access public health centre services. Consequently, the cost of outpatient services in HIV households over the period of one month was 5.3 times higher than that of non-HIV households. The largest component of outpatient costs for HIV households was transportation while for non-HIV households the largest component was examination fees. Related to assistance and support received, 40 percent of HIV households said that they have never previously received external support and assistance since their family members have contracted HIV. HIV households that have previously received support claimed greater access to medicines was the most valuable support received, but that greater economic support in terms of better access to capital or employment should also be extended. This expressed desire strongly correlates to levels of unemployment in PLHIV, with 48 percent of PLHIV targeted in this study, no longer employed.

In relation to childrens education, the study mapped smaller expenditure levels for education in HIV households in comparison to non-HIV households. In nominal terms, the average monthly education expenditure in HIV households is only 43 percent of similar expenditure levels in non-HIV households. Looking at the total proportion of households expenditure allocations, HIV households only allocate one third of their monthly income to education compared to non-HIV households. The results of this study also found that nearly 50 percent of PLHIV do not attend school and only a quarter of HIV households receive assistance for their children's education. However, PLHIV households also spent more on cigarette consumption than on childrens education.

In addition to diminished savings and selling of assets, efforts to overcome the problem of increased expenditure or reduced income due to HIV and AIDS in HIV households was to undertake borrowing, with as many as 47 percent of HIV households assuming loans. As a result, the percentage of HIV households with debts is significantly larger than that of non-HIV households.

10.2.Recommendations

Given the clear impact of HIV and AIDS at the household levels, they should target households rather than individuals, thereby ensuring coping mechanisms are extended to the entire family, including women, and children. The enormous medical costs and associated expenses incurred because of HIV and AIDs, the

The findings of this study clearly demonstrate the need to prioritise impact mitigation steps as part of the national and provincial AIDS strategies. Nancy comment: 60% of PLHIV are receiving some support, and that government support is particularly well targeted to the poorest groups. The most common support received is for medicines, and this is strongly appreciated (by 99% of PLHIV respondents).

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need for greater socioeconomic and legal empowerment, the need to address stigma and discrimination, and decentralise services should be prioritized within AIDS plans. The evidence from the study also clearly shows that HIV-sensitive social protection is a coping mechanism which can help tackle poverty and strengthen prevention and treatment efforts.

Efforts to mitigate the impact of HIV and AIDS should be a part of AIDS response strategies at all Since

Current efforts to mitigate the impact of HIV in HIV households are weakest in HIV households from
poor economic backgrounds. Various empowerment programmes for poor households implemented by Ministries and Social Services should be coordinated by the NAC in order to accommodate as many HIV households as possible and to streamline or overcome red-tape the community so their planning and implementation is effective

PLHIV and their households are among the most vulnerable and marginalized population groups in Indonesian society, HIV should be strategically and appropriately integrated into existing social protection schemes so that PLHIV can benefit from social services and transfers meant for poor and vulnerable people. This would also help sustain the impact mitigation efforts and prevent PLHIV and their families from adopting poor and unsustainable coping strategies. This may be done jointly with the Coordinating Ministry for People's Welfare, Ministry of Social Affairs, Ministry of Health, JAMSOSTEK and representatives from HIV households.

government levels and should be budgeted for. A stronger National AIDS Commission at all government levels, including through improved access to adequate budgetary funds, and through intensive advocacy and coordination, will be key to its success.

Impact mitigation strategies shall consider variations in the socioeconomic and cultural situations of The

A time bound action plan, including legal reforms, with effective targets by the NAC, the Ministry of Many

Health, and the Ministry of Law and Human Rights to reduce stigma and discrimination experienced by PLHIV in health facilities, workplaces and other public spheres is essential.

National AIDS Commission needs to formulate effective efforts to address stigma and discrimination for PLHIV and their families in the public sphere. Programmes underpinned by a comprehensive understanding of empowerment can be done with measurable outcomes and impacts.

Treatment, including for opportunistic infections, needs to be strengthened in terms of access, free The Ministry of Womens Empowerment should pay special attention to the feminization of HIV, with
services and quality of services. Wherever appropriate, such services need to be decentralized. Decentralization should be a principle in delivery of services, including social protection, wherever appropriate.

PLHIV respondents at clinical stages III & IV who are not on ARV treatment should be prioritized for treatment by the Ministry of Health in order to extend medical coverage and to ensure better participation rates in schooling by PLHIV.

an increasing number of women infected with HIV. Women are also impacted by the double burden faced by women in terms of assuming their traditional domestic workloads as well as that of their husbands, in terms of increasing spousal transmission rates, and poorer access to information and services like HIV treatment. Socioeconomic and legal empowerment for women and inclusion of women from PLHIV households in appropriate social protection schemes should be considered a priority.

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 The number of school-age children from HIV households who are not in school, should be targeted by

the Ministry of National Education through the execution of an integrated work plan designed to provide opportunities to children from HIV households in higher educational attainment.

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Attachments
Abbreviation
AIDS ART BPS ARV CD4 Bappeda CDR FGD HIV ILO FKUI IMR Acquired Immune Deficiency Syndrome Anggota Rumah Tangga Anti Retroviral Badan Perencanaan Pembangunan Daerah/Provincial or District Planning bureau Badan Pusat Statistik/ Central of Bureau Statistics cluster of differentiation four, a marker on the human white blood cell Crude Death Rate Focus Group Discussion Fakultas Kedokteran Universitas Indonesia/ Faculty of Medicines of University Indonesia Human Immuno-deficiency Virus International Labour Organization Infant Mortality Rate Jaringan Orang Terinfeksi HIV Indonesia Komisi Penanggulangan AIDS Daerah Men who have Sex with Men People Living with HIV United Nations Injecting Drug User Female Sex Worker Non-Goverment Organization Komisi Penanggulangan AIDS Nasional Millennium Development Goals

JOTHI KPAD MSM NGO UN MDG IDU KPAN

PLHIV FSW PHC

RSCM SDGK

Primary Health Care

UNAIDS UNDP

Rumah Sakit Cipto Mangunkusumo/ Cipto Mangunkusumo Hospital Survei Dampak Gangguan Kesehatan Joint United Nations Programme on HIV/AIDS United Nation Development Program

UNESCO UNGASS

United Nations Educational, Scientific and Cultural Organization United Nation General Assembly Special Session on HIV/AIDS

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VCT

WHO

Voluntary Counseling and Testing for HIV World Health Organization

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Sampling Procedures
A. Sampling of PLHIV or HIV households
Based on standard statistical methods, sampling procedures are usually undertaken by using sampling frame instruments as a basis for sampling. To implement activity SDGK09, the required sampling frame was not available. On the other hand, the majority of PLHIV were generally inclined to keep their status confidential to others or even to their own families/households. Therefore, the sampling frame could not accord to standard procedures.

In taking the above into account, the sampling of HIV households or target groups was carried out by JOTHI workers who were recruited by UNV as volunteers/field researchers for this study. As JOTHI itself did not have a complete list of PLHIV names however, the sampling methods undertaken were purposively in accordance with the needs of JOTHI workers. The sampling of HIV households was carried out by JOTHI workers, UNV researchers and field workers using the following procedures: b. JOTHI workers ask the PLHIV: a. JOTHI workers determine the PLHIV for sampling. 1. Are the PLHIV available to be interviewed with the SDGK09.M questioner?

c. If PLHIV were available under both b1 and b2, the PLHIV and their households were selected as samples. If they were unavailable, the workers were to locate a suitable replacement.

2. Are HIV households available to be visited by BPS workers to be interviewed with the SDGK09.K questioner?

B. Sampling of Non-HIV households

Non-HIV households serve as control groups by allowing researchers to identify characteristics and socioeconomic behaviors particularistic to HIV households. As a consequence, non-HIV households selected as samples were to possess a similar economic status. Indicators used as comparators comprised of: a. Conditions in residential housing facilities, and; b. The educational levels of household heads. Sampling of non-HIV households was undertaken by BPS workers using the following procedures: b. Non-HIV households around the residential houses of HIV households were observed;

a. The sampling of non-HIV households was undertaken immediately after the enumerators completed their interview of HIV households;

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c. Non-HIV households were selected based on similar socioeconomic conditions to that of HIV households by using comparative indicators (condition of residential housing facilities and education level of household heads)

C. Selecting Respondents for the In-depth Study

The number of respondents partaking in the in-depth study was at least four persons for each worker. PLHIV respondents for the in-depth study were directly selected by in-depth study workers. The selected respondents were sub-samples of the selected samples of PLHIV for the SDGK09 survey. As a result, the data obtained not only could be cross-validated, but was complementary. a. The more complex the problems encountered by the PLHIV, the more appropriate the PLHIV was considered to be for selection, and; Respondents in the in-depth study were purposively selected, but efforts were undertaken to ensure they met two requirements below:

In an attempt to secure eligible respondents for the in-depth study in compliance with the qualifications above, in-depth study workers were to select respondents in the field immediately after the completion of the SDGK09 questioner. An unstructured interview with respondents was directly undertaken at that time, or the following day, depending on the time availability of respondents.

b. The composition of respondents, including their sex and proper representation by population groups at higher risk of HIV exposure.

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