Understanding reasons for lack of acceptance of HIV programs among indigenous Papuans: a qualitative study in Indonesia

Keywords: behaviour changes, HIV/AIDS, indigenous people, Indonesia, integrated, modernisation, Papuan, stigma.

Asia is home to over 5 million people living with HIV (PLWH), with three-quarters residing in China, India, and Indonesia. According to the most recent data,¹ more than half a million PLWH live in Indonesia. Although this country provides free antiretroviral therapy (ART), <50% of PLWH were not on ART over the past decade.² This is probably because AIDS-related deaths are increasing by approximately 68%. A previous study found that non-adherence and stigma among PLHW are high.³ The HIV problems may be more complex because the transmission mode varies within the 33 provinces, with >60% of PLWH aged between 15 and 24 years.⁴

Indonesia comprises more than 17 000 islands, with Papua located in the eastern part. Indigenous Papuans are of Melanesian heritage and are racially and culturally different from most Indonesians. Conversely, HIV prevalence in Papua is approximately 24-fold higher than in other regions. There is a generalised epidemic, with 2.4% of HIV prevalence among the population aged between 15 and 24 years. This is more prevalent and complex in the highlands compared with lowland areas of Papua, which is the third most heavily affected Indonesian province. HIV awareness programs have been promoted to the general population, but with a few exceptions. A previous study stated that unprotected sex drives HIV transmission in Papua, but in other regions of Indonesia, the use of non-sterile needles and commercial sex workers might instead be the sources of transmission.⁴

HIV problems in Papua may be strongly related to the patriarchal system that is deeply ingrained into daily activities and strengthened by religious and traditional norms. Men are privileged to receive education and move to other areas to make a living, whereas women stay at home doing chores.⁵ Previous studies have stated that Papuans are hesitant to use a condom, with only <2% of men protecting themselves this way.⁶ This is even harder for tribes residing in the highlands because the men and women commonly have multiple partners.⁷

Decentralisation was implemented to improve the performance of health facilities in Papua.⁸ The central government established over 100 primary health centres to test and treat those diagnosed with HIV.⁹ Although distance remains a challenge, this helped Papuans receive proper access to healthcare facilities. Besides healthcare providers,¹⁰ community and faith organisation leaders are promoted to run HIV programs for Papuans.¹¹ The existing community HIV programs deliver messages on behavioural change by creating awareness of sexually transmitted diseases and the use of condoms; however, there has been no significant improvement because the HIV infection trend has continued to increase. Therefore, this study aimed to examine the resistance of indigenous people residing in eastern Indonesia towards participating in HIV programs.

This study was conducted in Papua Province on 3 million inhabitants in 29 regencies. The population density was extremely low, approximately eight to nine persons per square kilometre, though this region is inhabited by nearly 40 000 PLWH. Papua Province comprises highlands and lowlands within five customary areas. The poor natives residing in the highland areas are more isolated than the tribes in the lowland regions. As the most populated Islamic country worldwide, more than 90% of Papuans are Christians and Catholics, and religion affects their daily activities. Furthermore, Papuans have strong ties to church policy prohibiting polygamy, though multiple sexual partners are recognised among men and women in certain tribes.¹²

This is a qualitative study with data collected through semi-structured interviews between July and September 2018. Previous studies showed that grounded theory might be useful in understanding the resistance in a specific population, particularly in Indigenous peoples.¹³ Moreover, the theory may be flexible in comprehending new insights among Papuans after more than a decade of running the HIV program. Participant recruitment and coding were not restricted to gathering all phenomena in the community; it is also associated with activities that trigger the acceptance of the HIV program among Papuans.

The study team had diverse backgrounds, including pharmacy, nursing, sociology and medicine. Four team members had Master’s degrees, whereas five had PhD degrees. The interviewers were all females, with the exception of RS, and most were extensively experienced in conducting qualitative interviews. The interviews were performed in Bahasa Indonesia, as the national language commonly used among Papuans. Moreover, all interviews were conducted in a private location agreed upon by the participants and interviewers, comprising two non-Papuans and one Papuan. The interviewers included a pharmacist, a nurse and a counsellor.¹⁴

Purposive sampling was used to select indigenous people that fit the inclusion criteria. The criteria were: indigenous people participating in offline and online HIV programs in the past 3 years before this study, and those who agreed to be interviewed. Before conducting this study, the local healthcare providers were contacted and asked to select indigenous people that met the inclusion criteria. The healthcare providers in each location assisted in contacting the potential participants eligible for this study.

Participants were dispersed on Papua’s highland and lowland areas to obtain relevant contextual information during the coding and categorisation phase. Geographically, the participants from the highlands were represented by Wamena and Timika, whereas those from the lowland areas included Merauke, Serui and Jayapura. This inclusion proved that people from lowland areas are more open to modernisation than those from the highland. Subsequently, two women and two men from each area were interviewed because they were familiar with all questions reported in the previous study.¹⁰ Before the interviews were conducted, ethical approval or signed consent was obtained from each participant. All interviews took place in private locations, as agreed on by the participants and interviewers, and were audio-recorded. The participant’s information was kept confidential to avoid any issues in the future.

Data were collected through face-to-face in-depth interviews conducted between July and September 2018. The participants were asked to describe their experience in line with the increase in HIV cases in their area. All audio recordings were transcribed verbatim and double-checked, though the participants were unwilling to read the transcripts. The interview was stopped after the 23rd session due to data saturation because no new information had been obtained.¹⁵ Additionally, there was no repetition, as this study was guided by the consolidated criteria for reporting qualitative research interviews (COREQ).

Data were analysed using the Atlas Ti version 8.4 software (ATLAS.ti Scientific Software Development GmbH, Berlin, Germany), with transcripts coded by two analysts adopting the approach implemented in the previous study.¹⁰ The transcripts were read and re-read to develop an initial framework that was refined during coding. Moreover, the interviewers took field notes to include ideas, the interview setting, and the participant’s reaction while explaining certain questions.¹⁵ Specific categories and emerging themes were developed based on the theory developed by Strauss and Corbin.¹⁶ Discussions between the two analysts resolved the analysis disagreements. The themes were mapped using a larger framework on behavioural change.¹⁷ Memos were used to note important information and build the data codes and categories during the interview. Additionally, every interviewee was given a unique identifier of gender, age and region to protect their confidentiality.¹⁸

The interviewers were experienced in qualitative studies that considered trustworthiness and rigour. Three interviewers and a team member checked the interpretation of the interview contents’ accuracy. Furthermore, all transcripts were read and re-read to develop an initial coding framework. Two study team members conducted analysis and codification independently (EIS and EL). Different perspectives emerged towards the findings because the study team members came from different disciplines, but the analysis disagreements were resolved by discussions between all authors. After coding, categories were developed, and themes were identified. The results demonstrated accuracy, relevance, flexibility and neutrality based on the transcription, re-reading, memoing and saturation.¹⁹

All participants, men and women, gave written informed consent. This study was approved by the Ethics Commission, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada (number: KE/FK/0507/EC/2018).

This study involved 23 participants, comprising 11 women and 12 men, as shown in Table 1. Their mean age was 52 years, and none of the eligible persons refused to participate when contacted. Table 1 shows additional participants’ characteristics. The theme ‘keep being a good Papuan’ identified in this study depicts the indigenous people’s perception of the program over the past 15 years. Also, it shows how the program should continue to be run to be highly accepted among the community despite the existing skepticism. Table 2 shows the composition of implementers and recipients.

Table 1.  Characteristics of participants (n = 23).

Table 2.  Composition of implementers and recipients in the study participant group.

Table 3 shows that the theme, ‘keep being a good Papuan’, emerges from four interconnected categories, including culture–religion concepts, dealing with modernisation, integrated HIV programs and stigma reduction. According to the substantive theory, investigating the indigenous people’s experiences is preferable to relying on generalisation. This is because ‘keep being a good Papuan’ overcame problems and dealt with modernisation to eliminate HIV. This largely focuses on the local culture, implying Papuans considered that adjustment is needed to balance tradition with modern society.

Table 3.  The four interconnected categories of the ‘keep being a good Papuan’ theme.

Balancing modernisation with traditional values may be challenging for Papuans. Since the early days, Christianity and local values have significantly affected the Papuans’ lives, and they used those as standard practises for treating others. They believe that PLWH deviates from tradition and religion, though kindness and forgiveness should be shared without exception; however, the beliefs vary depending on different people.

We cheer, support and give assurance to HIV patients. As a mother, we treat our children similarly, and there is a need to support them no matter their personality. Women’s participation aids in tackling this problem immediately. These victims are embraced based on experiences. (Female, 46, Lowland)

The positivity of religion and local values is intense, as the participants agreed that shared deterrent effects traumatised the PLWH and the community. They remembered how PLWH and their families must be rejected and punished by the community, which preferred isolating them from social interactions or leaving them to die. One woman revealed that HIV is a burden, but the community’s reaction towards PLWH has improved significantly. This indicates that the punishment received by PLWH in the past should not happen again.

It seems like yesterday when nothing was done, except assuming that someone was HIV-positive. They believed being infected meant immoral acts and disrupted their values. However, they do not have the right to punish anyone, though it is difficult to forget. (Female, 54, Highland)

The information on HIV medication is poor among Papuans, as seen from their encouragement for PLWH to adhere to God’s forgiveness to ensure that they have better life quality.

We believe in the existence of God, and societal norms help us to be bound in many ways. There is a need to trust that existing medication should be accepted as hope. (Male, 61, Highland)

There is a complexity in understanding how to cure medication and how medication work because Papuans know that antibiotics kill bacteria in the body. However, they received information from HIV programs about ART and how it only suppresses virus replication rather than completely killing the virus. This presents uncertainties about the benefits of ART medication. Consequently, Papuans have accepted that living and surviving through HIV is a miracle, and their testimonies have improved the acceptance of ART in the community.

In early days, these activities were routinely run in the community. The campaigns created awareness and motivated the community to have more contact with adherent patients. They are encouraged against being scared of the virus. (Male, 68, Lowland)

HIV has triggered an awareness about several issues, including gender inequality. Patriarchy is considered a double-edged sword, with the potential to protect women from harassment because the community perceives them as the source of transmission.

Our values teach men to respect women, evident especially in Serui [district] because it is believed that women give birth to the younger generations. Also, it is believed that their descendants are bound to be unhealthy, supposing their women are HIV-positive. (Female, 47, Lowland)

One woman was confused about how women could be blamed for increasing the spread of HIV because this system preferred women to spend their time doing domestic work at home.

Communities are usually hesitant to mention HIV and refer to it as women’s disease. They feel embarrassed, serving as a reminder that they are the source of the virus. This is degrading for women. I do not understand our values. (Female, 47, Lowland)

Participants agreed that current traditions should be integrated into the modernised world. Papuans also discovered that the internet is advantageous because it connects them to the world. Furthermore, they stated that the education level of their members living in highland and lowland areas was diverse. People living in the lowland have a better education than people in the highland. This means information to be delivered to people living in the highland must be more modest. One man preferred face-to-face programs in rural areas to using the internet. The program could be delivered using simple words to ensure more members feel connected to the information.

As a community leader, it has been communicated that HIV is a problem. The leader stated that they intend to ensure that this information reaches members in remote areas. They are isolated from the lowland regions and also deserve to be informed about the seriousness of this disease and the need for it to be tackled in their communities. However, information regarding the spread of this virus is conveyed face-to-face. (Male, 45, Lowland)

One woman mentioned her concerns about hearing a word referencing genital organs during the programs. She found that some words in Bahasa Indonesia are taboo in the Papuan community, particularly words depicting how HIV is transmitted through sexual intercourse. Additionally, the woman stated the importance of ensuring children in the highlands are informed about HIV and its transmission.

The government promotes HIV prevention through the media, especially radio and community health center programs. However, only a few people listen to the radio. Moreover, community health centers combined HIV programs into integrated service posts (Posyandu). Consequently, they are mainly concerned about children and females. (Female, 45, Highland)

Papuans initially only slightly accepted the use of condoms, which was perceived as a preventive measure against HIV transmission; this included women, especially in terms of monogamous norms. However, they could not ignore the high possibility of contracting HIV infection. The extramarital and patriarchal system puts women in second place, typifying them by subordination. As a result, women had to accept condom use as an effective preventive measure with a heavy heart. It may be harder for women to advocate condom use as an alternative to protecting their children.

As parents, it is difficult to accept that young people engage in early sexual debut. This is an undeniable fact, implying that a condom is needed to prevent transmission of the virus. Parents could easily inform their children about condom use. (Female, 52, Lowland)

The men accepted that gender issues still exist, though their responses about the inequalities differed from women as partners and daughters.

Parents are bound not to allow their daughters to marry to infected males. They prefer refusing the marriage to allowing their daughters to suffer. (Male, 60, Highland)

Men were skeptical to use a condom as an alternative because it may cause problems with their partners.

I think a condom is useful but it also gives hard tensions to their partners. This indirectly implies the promotion of extramarital sex. (Male, 68, Lowland)

Participants stated that adequate efforts are needed to curb the spread of HIV in Papua, believing that collaborating with stakeholders is useful. Sectors such as health, community and faith organisations should be involved in these programs. Furthermore, participants stated that no one-size-fits-all in terms of HIV programs; therefore, central and local governments should implement effective HIV programs as a priority for Papuans.

I found that the previous local regent invited all parties, including hospitals and NGOs to conduct studies on reproduction and HIV. He was dedicated to fund some prevention programs. Furthermore, tribal and religious leaders actively supported the programs by inviting us to give information about sexual health as they met young people in their area. We claimed Merauke was the only district in Papua that successfully curbed the spread of this virus. (Female, 46, Lowland)

The government led these programs, though the participants failed to recruit the appropriate personnel. Consequently, the government’s views were not incorporated into the HIV program’s grand design.

Government should employ competent people from the local government, educational and health departments that collaborate in mapping the needs of each area. They should collaborate with local or international organizations when adjusting their requirements. Although stakeholders currently improve HIV knowledge among young people, the women-child protection program is neglected. However, I also find people more involved in the programs because they are relatives or friends. (Male, 62, Highland)

Collaboration between faith organisations and customary institutions is necessary to make the acceptance of these programs more widespread. Collaboration reduces deterrent effects, and encourages Papuans to listen to these organisations. The participants agreed that Papuans respect their faith and tribe leaders.

Our experiences in working with churches showed that many youths from highland and lowland areas attended church events enthusiastically. Churches invited us to participate in revival meetings and discuss HIV. Moreover, they gave some messages to not exclude PLWH and to accept them as God’s children. I think the events were effective in curbing the spread of HIV and reducing stigma in the community. (Male, 50, Lowland)

An indigenous woman stated that the government via a local AIDS commission frequently underestimated the community organisation’s capacity as facilitators for HIV programs. After attending a continuum HIV program in the capital, she was confused because the local commission excluded her from the program. The woman realised that Papuans act as users rather than implementers in HIV programs.

I do not know the reason the local commission chose me to attend the training of HIV programs in Jayapura. After coming back, I came to their office to inquire whether I could join their programs. They stated they would contact me in case a program needed immediate implementation. However, I have not received information from them until now. It seems indigenous people were trained as users, not implementers. (Female, 47, Lowland])

Participants stated that improving reproductive health knowledge and condom use programs failed in all Papua regencies, and so HIV prevalence and the number of deaths increased. This resulted in stigma reduction not being incorporated into the programs. Papuans believed that many PLWH were afraid to participate in ART because their regular attendances at health facilities would allow their HIV status to be known and they preferred reducing their social activities. Men and women had different opinions about stigma reduction in the community to help PLWH. One indigenous man stated that shelter might be an alternative to stigma reduction.

Shelters were built to meet people with similar condition and to not feel excluded. (Male, 68, Lowland)

Women promote the support of family members when participating in ART and remind PLWH to be compliant when taking their medication. They also understand that disclosing their HIV status to the community may be unnecessary because it has a significant impact on the family.

There is a need to look after the family because members are willing to help. However, this is impossible sometimes because they feel excluded by the community. It is understandable when parents hide their children’s status, provided they help them. This should not be neglected, and their decisions need to be respected. (Female, 52, Highland)

This study highlighted several points about how selected HIV programs should be planned and implemented to help Papuans improve their acceptance. The findings showed that ‘keep being a good Papuan’ caused difficulties for Papuans in dealing with the programs. Papuans need the programs to be sensitive toward culture–religion concepts and deal with modernisation-integrated HIV programs and stigma reduction; unfortunately, they could not find these elements in the current HIV programs.

Based on a preliminary study,²⁰ health-related policy issues are complex and interrelated with individual, social, contextual and environmental factors. The reluctance to participate in HIV programs occurs because Papuans believe that these issues have not been dealt with properly. These issues may be present because the HIV programs are generally implemented in key population areas. In this regard, interventions should be varied and stakeholders must implement HIV programs and encourage acceptance among Papuans even amid misconceptions.²¹ The Papuan community is skeptical about ART serving as a HIV drug because it suppresses but does not kill the virus.²² Papuans have been provided no additional information about these drugs to convince them that HIV is manageable. In agreement with a prior study, the healthcare providers conveyed the lack of knowledge and misperception about ART.²³ This led to the perception that there was no hope after being diagnosed with HIV, making the situation crucial and necessitating immediate rectification. Therefore, ART redefinition needs to be prioritised. Effort is needed to repeatly inform the community that ART is similar to medications for chronic diseases such as heart failure, epilepsy and diabetes. Therefore, improving the Papuan knowledge about HIV transmission by getting serodiscordant couples to talk about their experiences may change the community’s perspective.²⁴

Indigenous Papuans strongly tied to their culture and religion discovered the need for an exclusive approach to accept the benefit of HIV programs for Papuans.²⁵ This approach could create awareness of HIV programs, including prevention, because HIV is transmitted by unprotected sexual intercourse. Furthermore, topics on sex are not discussed among Papuans because they are regarded as taboo. Contrary to previous studies, Papuans preferred face-to-face meetings to mass media or internet platforms.²⁶ Although cultural interventions vary and are complex, indigenous people should be invited as program implementers. They fully understand the situation and local values, so this would reduce the communication gap in terms of acceptance.

Similar to indigenous people in south-east Asia, Papuans discovered that transformation from traditional to modern society is complicated.²⁷ In line with this, modernism leads to conditions completely different to that from the past, and it is a complex process.²⁸ Papuans found that their longstanding cultural practices must be incorporated into a more modern way of living.²⁹ They must accept that online communication is replacing face-to-face communication, but that this is not necessarily a negative change. This concept, however, is more difficult to accept by Papuans tribals living in highlands.

In line with a prior study, women responded differently about how tradition teaches men to provide financial security for their family and the use of condoms to prevent infections.³⁰ They discovered various degrees of acceptance in the adoption of condom use because their in their culture, the man is the dominant partner, and they must tolerate that their partner may have multiple sexual partners. Furthermore, they considered condom use beneficial to prevent infection; this is because they cannot refuse sex with their partner, and thus they are vulnerable to contracting infections.

Indigenous people are faced with problems such as stigma because they have a different skin colour compared with other Indonesians.³¹ It is perceived as a double stigma when one also is HIV positive.³² Consequently, the options to curb stigma include shelter and encouraging family members to help and support PLWH. Nonetheless, it is useful to collaborate with tribal communities and faith-based organisations to increase the number of Papuans willing to participate in these HIV programs. It is also necessary to discuss HV issues and ways to deal with the stigma by avoiding its use during the programs.

The programs should also be measurable and include cultural customs that support the readiness to change the community. Furthermore, behavioural, biological and psychological outcomes need to be measured by regularly reporting HIV infection incidences and the number of people accessing Voluntary, Counselling and Treatment. This may increase the number of Papuans who are actively engaged in the HIV programs.

The strength of this study lies in the diversity of participants living in highland and lowland areas. However, the study did not generalise the results to other Indonesian areas because it was restricted to only including indigenous Papuans. The local culture and religion were completely different from the rest of the Indonesians. Moreover, the participants knew each other and were familiar with recruiters. Most participants were educated, resulting in findings different from those obtained from uneducated people; therefore, it is necessary to conduct these HIV programs to reduce the associated stigma and benefit users of all education levels. Some issues must be rectified, however, and the programs need to be based on the region’s needs.

Integrating culture and community may increase the acceptance of HIV programs among indigenous Papuans. Community programs should be assessed over time to facilitate revisions to meet expectations; therefore, sustained funding needs to be secured from the central and local governments to ensure that future programs are achieved, implemented, and assessed.

The datasets used and/or analysed during the study are available from the corresponding author on reasonable request. The data are not to be shared outside of participating research institutions. Any queries on how to access the data set should be directed to the corresponding author or ira_sianturi@yahoo.co.id

The authors have no conflicts of interest to declare.

This study did not receive any specific funding.

Conceived and designed the study: EIS, KT, SNS, and RBS. Analysed the data: EIS, KT, EL, AP, CE, RBS, SNS, and ES. Wrote the paper: EIS, KT, EL, CE and AP. All authors have read and approved the final manuscript for publication.