A Good Cadre of Herbal Drink Making for the Elderly
June 5, 2024
Kebaya, Affirming Identity, Fluttering Our Existence
June 5, 2024From LFU to We Love You: PLHIV Dream to be accepted and self-acceptance
Just like patients with infectious or non-contagious diseases who are medically required to take medication for some period, People Living with HIV (PLHIV) are also required to take ARVs every day. Taking ARVs (also known as status on ARV Treatment/ART) requires discipline and willingness from PLHIV themselves. If they forget to take ARVs for one day, they must repeat them from the beginning. They have to change the type of drug because the previous one becomes less effective if they forget to take it. If PLHIV do not continue taking ARVs regularly every day, they are categorised as ARV dropouts or lost to follow-up, known as LFU, within 1-3 months.
At first, facilitators, peer groups, and HIV programme managers in Care Support and Treatment (CST) services thought that the geographical condition of ODHIV's residence far from health facilities was the main reason for many LFU cases. However, during an internal monitoring and evaluation focus group discussion (FGD) in Belu District with the 3 CSOs present, it turned out that geographical and transportation factors were not the main reasons for LFU in PLHIV. All members of the CSOs present in the FGD were asked to write in a post-it paper the "reasons why ODHIV have been and are currently in LFU".
When classifying, the reasons why PLHIV are in LFU are:
- A boredom of taking ARVs every day;
- ODHIV and family believe in taking traditional concoctions rather than ARVs;
- Desperation and embarrassment if (caught) taking ARVs;
- Reasons for family support, fear of being found out by the family that they have HIV and AIDS, pressure from the family who are embarrassed if the ODHIV takes routine medication at the hospital, no family member to take the medication, and problems with the family;
- Economic reasons, not having a job, and not having the money to go to the hospital and or the cost of transportation;
- The reason that the hospital is far from the place of residence;
- Realising too late that the stock is running out, moving to another place. It turns out that the new place does not have ARV services, returning home when the stock runs out;
- Fear of going to the hospital when COVID-19 cases are high, even though the stock of drugs is running out;
- Not knowing or not realising that ARVs must be routine (even after giving birth).
From the many categories of reasons mentioned by the participants, the most frequent reason experienced by PLHIV during and after LFU was boredom. Meanwhile, in a separate FGD with administrators and members of the AIDS Care Citizens in Belu District, based on stories from PLHIV and their own families, the psychological factors of PLHIV committing LFU were more prominent, namely the reasons for being ashamed of themselves and others, denial (rejecting reality), not ready to accept the fact that they are HIV positive.[1] Feeling unsupported by their own closest family is also a factor that causes PLHIV to LFU.
On the other hand, many PLHIV reported that family support was also the reason why they remained on ART and did not go on LFU. Family support, support from fellow PLHIV, peer support groups, and HIV programme managers are categorised as social support. Social support is needed by PLHIV when they first receive information about their HIV test results and the consequences of the treatment procedures they will undergo for the rest of their lives. Not only that, social support from family and the environment is needed when ODHIV are vulnerable to discrimination and stigma, even stigma coming from themselves. Kaplan (1993) concluded that individuals can obtain support known to be reliable, appreciative, cared for and loved in a social network. Sarafino (2006) also explained that interacting with others can modify or change an individual's perception of the event. This will reduce the potential for new or prolonged stress. Social support received by PLHIV has a positive impact on health, psychological, social and occupational aspects so that it can help PLHIV in improving health to deal with the HIV (Nurbani, 2008). Billings & Moos (Lubis, 2009) stated the results of their research, which showed that social support can combat psychological pressure during times of stress.
Thus, the process of accepting PLHIV, and then being accepted by one's environment, starting from family, peers and the community as a form of social support, is the keyword for PLHIV to undergo lifelong care and treatment to maintain the quality of their health. In several interviews to collect data for internal evaluation, several learning stories told by people living with HIV (PLHIV) and their families emerged to reinforce this condition.
This story of three PLHIV is about their experience when they decided to stop taking ARVs, or what we know as LFU. Not all stories have happy endings, but some stories end sadly.
Fight for being accepted
The first story the author got from an ODHIV who is a housewife living with two children, her biological mother and younger sibling. She does not have a permanent job, apart from getting motorbike taxi orders to serve female and elderly customers. Mrs K has been on LFU for about a year and is now back on ARVs. She was first diagnosed in 2018 because she showed symptoms, and her two children tested negative. In 2020, her husband asked K to migrate to work in Kalimantan, so she took her toddler child (1 year old). It turned out that when they arrived in Kalimantan, they settled in the middle of the oil palm plantation where they worked, which was very far from the city and had access to health facilities. K's mother did not have any information about whether the health facilities in the nearest city served ART or not, so she ran out of ARV drugs and could not continue treatment despite bringing a referral letter.
Because of this condition, Mrs K entered LFU status and began to drop in health. She forced her husband to return to her hometown so she could continue her treatment, but he did not want to. From then on, they argued frequently. Her husband abused her. It made her stressed. Until one day, K could not survive and decided to run away from home with her 1-year-old child. With Rp 1,800,000, she went to the airport with the help of her neighbour. Unfortunately, the money was insufficient to afford the plane ticket for two people and baggage fees. K's mother contacted her mother to send her some money to buy the tickets. Her mother tried to borrow money from her neighbours. With only the clothes on her body, Mrs K and her son made it home. Her families welcomed her. Due to her unsteady condition (drastic weight loss and severe psychological stress) she was admitted to RSUD for further treatment after the LFU. Until now, her relationship with her husband is not going well. They never communicate anymore. Her husband blocked her contact number and refuses to accept her and the children as family members because of her HIV status. In fact, her family-in-law lives only in the next village.
The main reason for K being back on ARVs was her family, especially her children. As a survivor of domestic violence, she is trying to get back on her feet. She now works as a motorcycle taxi driver, taking her neighbours to town. Mrs K wants to raise capital to sell fish. She is also active as a member of KDS to motivate others PLHIV and to assist her neighbours with LFU status.
Fight for self-acceptance
The second case interviewed was a married couple. For no reason, the husband did not want to meet us. We only interviewed his wife. A, about 21 years old, did not give much information as she remained silent and did not want to answer some questions. During the interview process, her mother and aunt accompanied her. K came along to motivate A again.
A was eight months pregnant. This was the second pregnancy after the first delivery in 2020. A's twins died one week after the birth. A had routinely taken ARVs for several months in the first pregnancy, and in the second pregnancy, ARVs were interrupted in June 2021. Until the eight-month pregnancy, she decided not to take ARVs. She only did the pregnancy checks once at the gynaecologist in the seven-months pregnancy.
A's physical condition was getting thinner and thinner (chronic energy deficiency). From the information, the assistant (at the midwife examination at the Posyandu) estimated her baby's weight would be only 1.6 kg. In addition, A showed other symptoms, such as chapped lips and dry facial skin. From the physical look, it indicated that her nutrition was low. The family, AIDS care communities, and HIV manager from the public health centre have tried to ask A to go to the General Hospital for examination and to start ART again. However, she was unwilling to take her medication. She argued that she did not want to take ARVs because she could not stand the side effects. She said that during her first pregnancy, she took ARVs that caused her to cough easily, which interfered with her pregnancy. When she was coughing, she had to do the premature labour. Unfortunately, her twins died. This trauma caused her to no longer want to take ARVs. In addition, the regional hospital's policy of requiring PLHIV who had LFU to go and get their medication themselves (so that the HIV manager could not get them for them) made her even more unwilling to go to the regional hospital for check-ups.
What about the husband? Although we did not get the story directly from A's husband, but from the stories of the facilitators, AIDS care communities, and other PLHIV who are his neighbours, A's husband never wanted to accept his status as PLHIV. He tends to ignore the fact that the virus is contagious and transmissible, with dangerous effects if left untreated. Mrs A is his third wife after his two previous wives died of AIDS. Because of her ignorance, she transmitted the virus to A after she married him. He never told her about his condition. No one knows whether she was afraid of being stigmatised, rejected, or never understood.
Feel rejected
Another story is about a former student who had experienced LFU. When we met her, she admitted that she had only been able to get out of bed for the past few days. S was a university student who was forced to drop out. Moreover, she decided to stop taking ARVs because she felt healthy and able to move. Initially, S took her first HIV test in 2018 because she showed symptoms of HIV. At that time, she immediately started taking ARVs at the Regional Hospital. The doctor, through S's mother, told S that she could not stop taking ARVs for the rest of her life. The ARV drugs that his mother took for S were sent by bus to the city where S was studying.
Her mum revealed how hard she motivated S not to stop taking the medication, apart from the fact that it was free. However, after a year of regular ARV consumption, around 2019, S decided not to take ARVs. The reason was that at that time, he did not have deep knowledge about HIV and felt that his body was fresh, so he thought it was like other diseases that recur.
Her body condition was dropped, a few months after deciding not to take ARVs. Her mother forced her to go and see a doctor at the Regional Hospital. When S stopped taking ARVs, her mother cried because she understood the dangers of dropping out. "If you stop, the effects can be worse. What the doctor said is what happened," explained her mother. So far, it has been her mum or her sister who has been diligently taking S's medication after work. Her mother was worried about being blamed by her family if she didn't remind S. At the time of ARV withdrawal, S experienced prolonged diarrhoea, fungus in the mouth, and skin disorders. Starting in February 2021, she was back to take ARVs. Her sister is now the one who picks up the medicine. Apart from feeling better, the reason for being bored of taking ARVs caused her to stop taking the drugs since the effect is also not resistant, namely nausea.
S has been back on ARVs again for seven months. "Thankfully, she has the opportunity to be healthy again," said his mother. After taking ARVs, her appetite had returned. Also, she can wake up. S was hospitalised for four days in the hospital. Since December 2020, S has not continued her studies. Her studies were about to finish, but she did not reveal why she dropped out. Registration in December 2020 was S's last time on campus. After that, symptoms of illness appeared, and her mother asked her to return to the village and not continue studying. When he recovers and is healthy again, S wants to open a kiosk business when there is business capital. "For my friends, if you can continue taking medicine because we with HIV depend on ARVs. If possible, think of it as food every day", S hopes to fellow PLHIV. The only effect of the current ARV is nausea when taking it. He feels that the impacts of the first ARV are worse than the current one.
Unfortunately, S's enthusiasm to return to the ARV routine did not last. After the interview, S did not continue taking ARVs. She kept the drugs under her bed. She died a few months later, leaving behind diary entries that signalled how lonely she felt facing life as a PLHIV and feeling unsupported by her family.
What can they do?
K, who accepted herself as PLHIV despite not being accepted and supported by her husband and his family, was able to continue her ART and restore her health quality. In addition to the desire to survive, she remembers the support of her core family, namely her biological children, mother, and siblings, that accepted K as PLHIV. In another story, A denied herself ash PLHIV. This attitude is reinforced by the lack of support from her own partner, although her family and neighbourhood are supportive of treatment. However, the decision of treatment and care is up to Mrs A. Similarly, S feel unsupported by her family. S decided to stop taking ARVs even though they were available to her and chose to focus on her loneliness issues until she left her life.
What can we learn from this? These stories show that PLHIV experience diverse psychological dynamics. It is true what the Peer Support Groups and AIDS Care Communities said in the reflection FGD that it is not a mechanical thing that causes such a high LFU, but psychosocial issues surrounding the life of ODHIV after being declared. Loneliness and inability to deal with the problems that come with being declared PLHIV and PLHIV can feel meaningless. In the end, PLHIV tends to decide to stop treatment. PLHIV has several options that have been given many examples by PLHIV who survive and show their survival.
The choice for PLHIV is whether they can accept themselves as PLHIV or not, and whether they can interpret the support they will receive in terms of improving their health. Meanwhile, the choice for the family, neighbourhood, and companion of PLHIV is whether they can provide support for PLHIV so that they can continue their lives.
As a result, CST service providers, PLHIV aid organisations, peer support groups, and other relevant parties start to value and give careful consideration to psychological services for PLHIV and their families. Services for psychological support can be promotive, preventative, curative, and rehabilitative, according to Gabriella (2016) [1]. It can be adjusted to help PLHIV. In addition to being susceptible to stigmatising behaviours and discrimination, those living with HIV are also susceptible to psychological issues. If we do not treat it seriously, it will result in mental illness. These mental illnesses can show themselves as stress, despair, protracted loneliness, and the choice to take one's own life, either rapidly or gradually, by ceasing to wish to receive antidepressant therapy, for example.
Therefore, it is essential for supporters of PLHIV, including families, service providers, peer support groups, motivators and others, to understand how to provide psychosocial support for ODHIV, one of which is to be a listening friend. The method of listening and supporting PLHIV does not necessarily require professional skills like counsellors who need special training. However, how to listen and provide support to PLHIV also requires special training in knowing simple basic psychosocial principles. This training and mentoring needs to be provided for people who work around f=HIV, as well as for families who accompany ODHIV. Among PLHIV themselves, they can also become subjects to provide support for their peers, especially for people who have been diagnosed as PLHIV for the first time.
In addition to providing companionship and assistance, the psychosocial approach intervention aims to lessen ODHIV's sense of loneliness by supporting them in overcoming their inclination to feel alone. A psychiatrist's support may include psychiatric intervention to a broader level, making the service more all-encompassing. Psychiatric services offer ODHIV a dialogical environment in addition to therapeutic treatment in a mechanical manner. According to Gabriella (2016), there is a growing need for psychological medication, which Law No. 18/2014 on Mental Health also acknowledges. The Mental Health Law lists psychologists' diagnostic power in Article 19 and social workers', psychologists', halfway homes', and rehabilitation centres' practice services as mental health service providers outside of hospitals in Article 56. To ensure that all Indonesian citizens have access to psychological services that support mental health, especially for PLHIV, the law's implementation needs to be closely watched. It is essential to keep in mind that referral hospitals offer full CST treatments, which include mental health services for ODHIV in need.
As the final reflection, it can be imagined that it would be wonderful if ODHIV received complete psychosocial support, in addition to training themselves to accept their situation and make peace with their new status. ODHIV can accept and feel accepted. Thus, the LFU rate no longer rises but decreases and becomes 0 or zero, which brings ODHIV to a much better quality of life. We hope that the words LFU will one day turn into WLU which means We Love You for our dearest PLHIV.*
(Dewi Utari).
References:
Gabriella, A. (2016), Layanan Psikologis dan Kesehatan Jiwa dalam Penanggulangan HIV AIDS diunduh melalui https://pph.atmajaya.ac.id/berita/artikel/layanan-psikologis-dan-kesehatan-jiwa-dalam-penanggulangan-hiv-aids/
Kaplan, H.I., Sadock, B.I., Grebb, J.A.1993. Sinopsis Psikiatri : Ilmu Pengetahuan Perilaku Psikiatri. Jilid dua : edisi ke tujuh. Jakarta : Binarupa Aksara.
Sarafino, E.P. 2006. Health Psychology: Biopsychosocial Interaction. Fifth Edition. New York: John Wiley & Sons Inc.
