The Right to Health: A Winding Road Toward Behavior Adaptation in Facing a Pandemic

“Yes, my role as a caseworker is to educate (participants) on the prevention of COVID-19. But when the people I educated contracted the virus and asked for help, I could never ignore it. There is a moral responsibility there.”

Moral Responsibility

Public health education activity is nothing new to Fajar. It has been almost five years since he got introduced to peer assistance program for People Living with HIV/AIDS (PLWHA). In 2018, he joined Kotex Mandiri Foundation and became increasingly convinced that social work is his calling. Thus, when Kotex asked him to carry out COVID-19 risk communication and prevention education for the PLWHA community in partnership with the Human Initiative, Fajar took the role eagerly.

Fajar, one of the LeaN On caseworkers in Jakarta who is working under Kotex Mandiri Foundation and the Human Initiative supervision.

Years of involvement in PLWHA peer assistance programs got Fajar used to the unpredictable nature of his work. Sometimes, he has to fetch the assisted peers from wherever they are to ensure they collect their ARVs on time. Receiving phone calls in the middle of the night from a peer who is in a critical situation or in need of help is not unusual for him. Fajar does not mind giving up his time to rest to ensure the peers receive the much-needed assistance.

Nonetheless, the new role as a LeaN On caseworker he recently took has unexpectedly brought him a peculiar experience. Fajar never imagined that one day he would be working at the forefront of a new pandemic; even helping evacuate people who contracted COVID-19. “I was lucky. I was very lucky because at that time I (actually) didn’t have a proper PPE with me. I only put on two layers of face mask, a face shield, and a pair of gloves while evacuating a family of three. But thankfully, my (rapid) test came out negative,” explained Fajar.

Fajar was surely aware that evacuating a program participant who is COVID-19 positive was not part of the job. So we asked his reason to take the risk of being exposed to the virus, and his reply was, “Yes, my role as a caseworker is to educate (participants) on the prevention of COVID-19. But when those I educated contracted the virus and asked for help, I could never ignore it. There is a moral responsibility there.” Out of the 330 participants he educated on COVID-19 risks, at least 10 people have contracted the novel virus. Five of those had Fajar involved in the evacuation and referral arrangements to health facilities.

Fajar shared the latest information related to COVID-19 to one of 330 LeaN On program participants he has been mentoring

Boy, a program participant whom Fajar evacuated along with his parents, joined us in the middle of the conversation. Showing up with a mask covering half of his face, Boy was looking fit following his recovery from COVID-19. As one of the peers who is currently taking ARV and still undergoing methadone therapy, Boy belongs to the highly-vulnerable group to severe COVID-19. So are his elderly parents. Aware of the risk, Boy took the initiative to contact Fajar when the COVID-19 symptoms became more pronounced.

“Initially, I isolated myself at home. But it got worse, so I contacted Fajar. I just didn’t know who else I could ask for help, our neighbors were all scared. But Fajar bravely fetched me; he actually went inside the house and took me to the health facility on his motorbike,” said Boy about the evacuation that Fajar had carried out alone. He added, “When they found out that we were contracted by COVID-19, people were scared to even walk in front of our house. The stigma was so strong.”

Boy, one of the program participants who received COVID-19 prevention education from Fajar.

COVID-19 Risk Perception

Prior to battling the COVID-19 themselves, Boy and his parents practiced the prevention protocols loosely. Like many others, his risk perception was distorted by various factors. The circulating stories with biased perspectives from survivors who had little to no symptoms or those who recovered in a relatively short period of time were just a few of many factors that raised his doubts on the risk level of COVID-19.

“Before it happened, I rarely put on face masks. Only after Fajar educated us on this matter, I understood a little more and started to put it on every now and then; still far from being disciplined. I only started to strictly put the mask on after experiencing the pain myself. Wow, that really hurt,” explained Boy about his process of adopting preventive behaviors.

In addition, rumors about ARVs’ ability to ward off the COVID-19 infection is another factor affecting the risk perceptions among PLWHA. “When the news appeared, a number of PLWHA reached out to me trying to verify it. Some even believed it’s true,” said Fajar. He continued, “This news was brought up by the media. Yet if you read them, there was a lack of details: which types of ARVs? To whom and where did the trials were conducted? How was the result? It has to be comprehensive. The risk is too big, you know, from misinformation like that. So yeah, the media was part of the problem too.”

Danu, a LeaN On program participant, immediately welcomed Fajar with questions regarding vaccination as soon as they met. Although the risk communication outreach has ended, Fajar is still the focal point for the COVID-19-related information for the PLWHA around him

It is interesting to observe the dynamics of risk perception among vulnerable groups. Seemingly, familiarity with prevention education on HIV/AIDS does not necessarily build the desired risk perception in the case of COVID-19. According to Fajar, PLWHA is relatively easy to reach because not only are they used to receiving similar health education, regular visits to health facilities have also exposed them to various COVID-19 prevention educational materials that are easily found in those facilities. However, intense exposure to information is apparently not enough to build an accurate risk perception, as well as the expected change in behavior.

The Winding Road towards Behavior Change

Even though he realized that behavior change is not easy to achieve, Fajar continued to exert his best efforts in educating the PLWHA communities about the risk of COVID-19. He believes that behavior change communication strategy has a lot in common with general marketing communication strategy. “I used to be a salesperson. The (marketing) knowledge is very useful for this outreach. Product knowledge, for example, is very important. If we don’t understand the product, how can we sell it? Basically, we are trying to make the participants willing to buy the behavior change, right?”

One of the health facilities where Fajar conducted the COVID-19 risk communication activities under LeaN On

Furthermore, Fajar highlighted the importance of persuasive communication, the use of appropriate language, the emotional approach, and the willingness to gather the latest information in conducting risk communication. “I often try to find out the participant’s hobbies first to build a conversation. This is the reason why behavior change education should be carried out by the community members themselves. Can you imagine if the caseworker has to educate strangers? It would be hard to persuade them because the trust has yet to be built.”

As Fajar repeatedly said, behaviour change takes time. Nevertheless, he was pleased to know that some of the program participants have started to practice the prevention protocols despite the varying levels of adherence. Fajar delightfully mentioned that a number of participants have started to wear face masks more diligently than before. Some even prepare spare masks when they are out and about, or begin to carry hand sanitizer in their bags. Fajar believed that these small changes should be seen as significant progress considering the limited outreach timing.

In addition to Fajar’s answer, Boy revealed that wearing a mask is the easiest behavior to adopt and it has been increasingly adopted by the PLWHA community members. The reason is that they have started to feel awkward or even embarrassed when the other members they are interacting with are wearing masks. In other words, a domino effect is taking place in the process of behavior change. Meanwhile, washing hands and maintaining a safe distance still seem hard to practice for most of the community members

(left) The existence of an easily accessible supporting facility for health protocols is expected to help manifest behavior change. However, the risk perception is an important indicator for the success of behavior change; (right) a group of people watching a bird singing competition in East Jakarta, which shows a distorted perception of COVID-19’s risks.

It is an irony when a significant behavior change in terms of COVID-19 prevention only occurs once the participant has gone through suffering from its health impact. In the case of Fajar and Boy, the behavior change had to take a winding road the night Boy lost his strength and put his hopes to be able to access proper treatment on Fajar.

Fajar’s decision to take the risk of being exposed to COVID-19 while evacuating Boy, convincing his parents to be evacuated, taking care of referral administrative needs, and securing isolation rooms in hospital, is certainly not the scenario that crossed his mind when he agreed to take a role as LeaN On caseworker last year. Nonetheless, Fajar has finally witnessed the desired behavior change in Boy even though it did not happen through the expected linear process. As soon as he recovered from COVID-19, Boy never took off his mask ever again when he was outside.

“Health is the right of everyone. I really hope that everyone claims their right to be healthy. Either by regularly taking ARVs, willing to receive the COVID-19 vaccine, or by complying with health protocols, ”said Fajar when asked about his reflections on the experience.

The sun was scorching hot when we ended a three-hour conversation at a stall located next to the health facility where Fajar provides assistance and performs COVID-19 risk communication activities for the PLWHA community. The most important lesson we brought home that day is that there is room to improve risk communication strategies so that critical behaviors can be adopted into daily norms before more people contract the coronavirus. Protecting the most vulnerable members of the community is an utmost priority.

LeaN On by INVEST DM is an inclusive RCCE program that aims to provide access to risk information and education on COVID-19 prevention, including information on available social protection services, for 165 thousand people with disabilities and other vulnerable groups in seven regions in Indonesia. This program is supported by the American people through USAID, and in partnership with BNPB, Kemenkumham, MAJu (The Asia Foundation) and a consortium of partners consisting of Mercy Corps Indonesia, ASB, ThisAble, Human Initiative and AtmaConnect.

The views and opinions of authors expressed herein do not necessarily state or reflect those of the U.S. Government or the USAID.

LeaN On by INVEST DM is a USAID funded COVID-19 risk communications & engagement of people with disabilities & vulnerable groups in seven regencies in Indonesia

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