Kebaya, Affirming Identity, Fluttering Our Existence
June 5, 2024
Break Stigma, Grow Empathy: Health Care Support for Women with HIV
June 5, 2024The Continuum of Care for Integrated HIV and AIDS Control
The concept of a Continuum of Care established by the Ministry of Health in July 2012 aims to strengthen the integrated primary health care system for HIV and AIDS control. This comprehensive service includes promotive, preventive, curative or treatment, and rehabilitative efforts. In its development, this LKB policy is better known as Care, Support and Treatment (CCT) services. However, the Care, support, and medication service are a part of the NHS policy. Conceptually and policy-wise, the Continuum of Care is an essential part of HIV and AIDS control. It is not excessive if Bethesda YAKKUM pays special attention to the implementation of this LKB in the HIV and AIDS Control programme in Belu District and Yogyakarta City.
FGD for Health Officers about the Women-with-HIV Service
In terms of policy, health services are comprehensive and include HIV and sexually transmitted infection (STI) services, such as Information Communication and Education (IEC), HIV Counselling and Testing (CCT), Care, Support and Treatment (CCT), Prevention of Mother-to-Child Transmission (PMTCT), Drug Harm Reduction and STI services. Likewise, continuous services are provided in full from the home or community (hotspot) to health service facilities such as health centres, clinics and hospitals until returning to the home or community of origin. This activity involves all related parties, including the government, the private sector, and the community. Various community representatives can contribute to the effort to achieve this comprehensive service, including cadres, NGOs, Peer Support Groups, PLHIV, PLHIV assistants, families, Empowerment and Family Welfare, traditional leaders, religious leaders and community leaders as well as organisations/groups in the community.
In addition to the medical aspect, the continuum of care also provides support in the psychological and social aspects of PLHIV during care and treatment to reduce or resolve the problems they face. When PLHIV experience discrimination or hate speech from family or neighbours, services can provide psychological support, or when PLHIV experience economic constraints due to their status, services can provide alternative problem-solving. [1]
What is the current reality of the continuum of care? Over the past few years, much progress has been made in HIV control programmes in Indonesia. A range of HIV-related services have been developed and utilised by people in need, particularly the growing number of at-risk populations. However, the effectiveness and quality of these interventions and services are still uneven and not all are interconnected.
In addition, there are still many challenges to be faced such as service reach, coverage, and client persistence in accessing services. Therefore, comprehensive HIV and STI services at the district/municipality level are urgently needed to support HIV and AIDS control in Indonesia, namely reducing morbidity, mortality and discrimination and improving the quality of life of PLHIV. The number of Continuum of Care coverage should continue to expand and improve the quality of services as the increase in new HIV infections shows an upward trend while the Indonesian government targets Three Zero by 2030. The Three Zeros are no new HIV infections, no AIDS deaths and no stigma and discrimination against PLHIV.
The implementation of the concept and policies of the continuum of care in community-based prevention programmes in some areas has not been optimal. There are collaborative activities that can be carried out between the government, health facility managers, civil society, as well as communities, key populations and PLHIV, such as Prevention of HIV Through Sexual Transmission (PMTS) and HIV and AIDS care, support, and medication services. Obstacles that arise include budget constraints, unsupportive local government policies, attitudes and behaviours of medical personnel that tend to be discriminatory and reluctance to involve the community in HIV control programmes.
On the other hand, key populations, at-risk groups, and PLHIV expect health services to be friendly and provide space for individual counselling. They hope that PLHIV or at-risk groups are not used as objects but as individuals who can be empowered. In addition, based on reality, PLHIV themselves have diverse backgrounds ranging from children to the elderly, including people with disabilities, diverse gender identities, and economic groups that also vary. Therefore, there is an urgent need for friendly and inclusive health services that can be accessed easily based on their special needs. In addition to providing convenience, a PLHIV-friendly continuum of care is expected to prevent Lost-to-Follow up(LFU) or ARV drug withdrawal.
How is the continuum of care implemented in the Belu District?
AIDS Program in 2019, the implementation of the continuum of care was only carried out centrally at Regional Public Hospital Mgr. Gabriel Manek Atambua. After various discussions and workshops and coordination with the Health Office, hospital leaders and the AIDS Commission, plans were made to add Care, support, and medication services in health centres and private hospitals. The Belu District Health Office played an active role in establishing the policy of adding Care, support, and medication services or the continuum of care services according to the standards of the Ministry of Health of the Republic of Indonesia and Atambua Regional Hospital which provided opportunities for the HIV team of the health centres and Marianum Halilulik Hospital to conduct internships at the hospital. Three health centre AIDS teams and one hospital participated in on-the-job training (OJT) or internships at Regional Public Atambua in preparation for the establishment of a new PVR service. Furthermore, starting in 2022, the continuum of care or care, support, and medication service at the health centre will be implemented so that the PLHIV can directly access health services at the nearest health centre.
Currently, an additional six public health centres and one private hospital provide CST services. There are five public health centres (Atapupu, Wedomu, Atambua Selatan, Silawan and Umanen) and one private hospital (Catholic Hospital Marianum Halilulik) located in the CD Bethesda YAKKUM program intervention area. The addition of CST services cannot be separated from the contribution of CD Bethesda YAKKUM from the first phase to the second phase of the HIV and AIDS Integrated Control Programme. There are several activities carried out through the programme in collaboration with the Belu District Health Office, including facilitating internships for health workers (doctors, nurses, health analysts, pharmacists, recording and reporting officers) assigned to the new CST service. Other activities include routine supervision and monitoring of LKB implementation by the Belu District Health Office and CD Bethesda YAKKUM. Through routine monitoring, it is hoped that the development of the continuum of care can be monitored and the obstacles faced will immediately get a solution.
Several obstacles are still faced in the implementation of the new CST services, including the limited number of trained health workers, the persistence of stigma and discrimination in health services, the lack of confidence in the trained health workers and the mutation of officers who have received training. Although there are still obstacles, the addition of CST services in Belu District shows the commitment of the local Health Office to provide the best service to PLHIV. At least by adding services up to the public health centre level, PLHIV can more easily access the health services they need, both access to Anti Retroviral (ARV) treatment as well as examination and treatment of Opportunistic Infections (IO).
Development of PLHIV-Friendly Community Health Centres in Yogyakarta City
As one of the regions that has attention in HIV and AIDS control efforts, the condition of the continuum of care in health services in Yogyakarta City has developed earlier than in Belu District. The CST services are currently provided in 14 hospitals and 18 health centres in Yogyakarta City. Six health services that are partners of CD Bethesda YAKKUM have long been appointed by the Yogyakarta City Health Office to become the CST services.
Although the implementation of the continuum of care by the standards of the Indonesian Ministry of Health has been quite optimal, the quality of health services to PLHIV still needs to be improved and monitored. Several cases are still encountered, including complaints from clients who experience discomfort in accessing health services. Discomfort occurs due to the condition of the counselling room, which does not maintain privacy, as well as due to unfriendliness or stigma and discrimination from officers. Another challenge encountered is the limited time of doctors working on HIV programmes due to the diverse workload by the main tasks and functions of the public health centre.
Discussion Session in PLHIV-friendly Continuum of Care Workshop
Through this programme, CD Bethesda YAKKUM conducted a series of activities to optimise the implementation of the continuum of care. The series of activities began with the PLHIV-Friendly Continuum of Care Workshop which was attended by the Yogyakarta City Health Office, health services, and representatives of key populations and PLHIV. Representatives of key populations and PLHIV provided inputs to the health services to develop a PLHIV-friendly continuum of care concept. This activity aims to share the experiences of HIV continuum of care implementation and lessons learnt on the demands of the future continuum of care concept development as well as to formulate the concept of a PLHIV-friendly continuum of care. The result of the concept formulation will be a guideline to measure the quality of the continuum of care.
The workshop began with a sharing by Gedongtengen public health centre (government services) and Denpasar Kerti Praja Foundation (private services), on good practices and challenges in implementing HIV CSOs. This sharing became the input for group discussions to formulate the concept of PLHIV-friendly continuum of care that can be implemented in Yogyakarta City.
PLHIV-Friendly Continuum of Care Monitoring Tools
The PLHIV-friendly continuum of care concept formulated in the workshop was followed up by a team consisting of the Yogyakarta City Health Office, representatives of four CST health centres and CD Bethesda YAKKUM into a PLHIV-friendly continuum of care monitoring tool. The PLHIV-friendly continuum of care monitoring tool will be used to monitor the quality of health services. Its use can be done independently by health services.
This tool monitors two areas: health service management procedures and governance. Aspects of governance include resolving complaints, financial resource management policies utilised for inclusive service improvement, monitoring, evaluating, and reviewing health service development; internalising values on PLHIV-friendly services; and policies for PLHIV-friendly services. The execution of all continuum of care activities, such as HIV counselling and testing, infection prevention, HIV care and treatment, PLHIV and family support, and information and education communication, is a part of health service management practices.
The process of developing the PLHIV-friendly continuum of care monitoring tool has reached the stage of socialisation by the Yogyakarta City Health Office to health services and agreement to be used in the monitoring process which is planned once a year.
Monitoring the Health Access on Women with HIV in Yogyakarta City
In particular, CD Bethesda YAKKUM received an invitation from Dr. dr. Brian from the Presidential Staff Office to conduct a survey of access to services for women with HIV. The survey was conducted in the form of questionnaires and in-depth interviews with women with HIV as well as Focus Group Discussions (FGDs) for health care workers in Yogyakarta City.
Questionnaires and in-depth interviews were conducted to obtain information on the knowledge, attitudes and behaviour of respondents related to HIV and AIDS issues including access to health services for women with HIV. An overview of the results of in-depth interviews with ten women with HIV showed that respondents' knowledge about HIV and AIDS was good. Nine respondents stated that HIV can be prevented from transmitting to others by using condoms during sexual intercourse and only one respondent did not know how to prevent HIV. Six respondents also mentioned that consulting a doctor and taking ARVs regularly can prevent HIV transmission from mother to child. Three respondents specifically mentioned that the Prevention of Mother-to-Child Transmission programme is one of the ways to prevent mother-to-child transmission. All respondents stated that HIV is incurable and that the drugs they take are meant to control the virus.
The outcomes of the in-depth interviews also revealed that the process of self-accepting was challenging for each responder. They felt depressed when they initially found out they were HIV positive. However, with the help of their families, they were able to come to terms with their condition. The respondents' views towards other HIV-positive women were typical; they were similar to those of other women. HIV-positive women can be regarded as healthy. When someone is healthy, they can perform all daily tasks without difficulty. The respondents expressed positive sentiments about the prenatal, postpartum, and neonatal care they had received. Every responder said that there was no discrimination and that services were freely accessible.
The results of in-depth interviews related to behaviour in accessing health services showed that all respondents could access ARVs easily. They routinely check their viral load at hospitals or health centres. During this time, all care and treatment costs were covered by the Social Insurance Administration Organization, except for certain drugs.
Furthermore, every respondent claimed not to have ever encountered an ARV stockout. When supplies run low, antiretrovirals (ARVs) are typically administered in lesser doses, such as one week's supply, or as fractions rather than as Fixed Dose Combination (FDC) or combination medications with a constant dose. Viral load testing was likewise deemed to be problem-free by all respondents. Although it was only administered once a year—ideally, it should have been every six months—the exam was free to take. The respondents asserted that they had no issues with time, distance, or transportation to get to Yogyakarta City's medical services because the city is easily accessible by motorbike from their homes.
Most respondents had never been refused health services. Although, some respondents stated that they had experienced discomfort. Feelings of discomfort were often self-inflicted as PLHIV were afraid that their status would be known by people they knew. One respondent was treated differently when the nurse found out about his HIV status and immediately used gloves. There was also a respondent who was asked to postpone dental surgery due to the need for a TB test and a request to abort the pregnancy so as not to infect the baby. On the other hand, all respondents stated that there were no financial barriers to accessing CST and other health services because they were covered by the Social Insurance Administration Organization, except for medicine which was not covered.
Questionnaire Filling and in-depth Interview on Woman with HIV
The FGDs for healthcare workers aim to capture the knowledge, attitudes and behaviours of healthcare workers in providing HIV services. The FGDs were conducted with six representatives from Yogyakarta City Hospital, Bethesda Hospital, Gedongtengen Public Health Centre, Mantrijeron Health Centre and Tegalrejo Health Centre. The results of the FGDs showed that three health centres had already implemented the care, support, and medication services with trained HIV teams. Representatives from two hospitals also stated that not all teams in the clinic had received training as AIDS teams. In general, health worker respondents have been in the AIDS team for a relatively long time, and only one doctor from a private hospital is relatively new. In terms of service delivery, there is a specialised clinic for HIV. However, it is still integrated with internal medicine.
The triple elimination programme has been implemented for pregnant women in the first trimester or during the first examination. It is free of charge. Based on the results, there are health centres that have found HIV-positive pregnant women. However, the labour process for HIV-positive pregnant women is still referred to the hospital in collaboration with the accompanying NGO. There is an officer who has handled the delivery of a mother with HIV, and the baby is given prophylaxis under established standards.
The general barriers related to screening, diagnostics, treatment, and viral load examination are that not all patients can afford the cost. Another inhibition is the difficulties of partner notification because not all patients disclose their status to their partners, especially patients with risk factors for multi-partner sex. Counselling for pregnant women on newborn feeding recommends exclusive breastfeeding at birth, but most pregnant women with HIV choose to give infant formula.
From the attitude side, the FGD result showed that the health officers were used to serve the women with HIV. Even one health officer stated that sometimes they still questioned the cause of the infection, they were not afraid of contracting HIV from the patient. The health officers also stated that women with HIV can be considered as a healthy person. The definition of healthy is when physically women with HIV do not experience symptoms that lead to the AIDS stage, and all their health conditions are well controlled. On a scale of 0-10, all health officers scored 8-10. On the other hand, they mentioned that they take it for granted when serving transwomen. Some health workers stated that they were used to serving transwomen even though they rarely served them.
FGD for Health Officers about the Women-with-HIV Service
FGD results show that health workers have received criticism when providing services to PLHIV, usually through Google reviews. Usually, the in-charge team will follow up the criticism. If they found a transgender with HIV, the health worker stated that they would treat them equally. They will provide the standard service to all the patients.
When the FGD result and the in-depth interview result are compared, the general conclusion is the health service already gave the service according to the standard of the Indonesia Health Ministry. The five health services did the care, support, and medication service at a certain time with the trained team. The health service for pregnant women with HIV was done according to the procedure. The uncomfortableness of the PLHIV happened when they faced the new officer who did not have enough HIV information. Except for several drugs, the Health service financing is generally borne by the Social Insurance Administration Organization. As the follow-up suggestion, the PLHIV access survey to the health service is essential to be done after the programme intervention to monitor the health service quality. It includes the hospitable continuum of care monitoring that is done by the health service.
Collaboration to realise sustainable comprehensive services through care, support, and medication services that provide closer access for PLHIV to care and treatment services in Belu Regency have been progressing. Furthermore, the development of care, support, and medication services in Yogyakarta City has led to efforts to provide PLHIV-friendly services. Although there has been significant progress, efforts to provide a quality continuum of care still need to be improved and monitored to support the success of HIV and AIDS control programmes.
Ghanis Kristia
[1] Pedoman Penerapan Layanan Komprehensif HIV-IMS Berkesinambungan, 2012, Kementrian Kesehatan RI
