Home visitations assist clients in living a happy life

Susan Taaka was one of the first volunteers for American-based pediatric HIV/AIDS organization Baylor Uganda’s community outreach program. She sits in one of her client’s household at the beginning of her day. Susan is HIV-positive herself, which allows her to share her own experiences and testimonies with her clients to help inspire them. (Madeline Dippel | The Media School)

KAMPALA, UGANDA – Susan Taaka undoes the Velcro of her shoes and sets them at the entrance of the middle-class Ugandan household before sitting down on the couch across from her client.

“My name is Taaka Susan, area community volunteer for this area representing Baylor,” she said in Luganda, the most widely spoken local language in the eastern African nation of Uganda, before explaining the role she plays.

Susan begins every household this way. She sits across from her client, and references the “Home-visit follow-up guide” resting on her lap. Susan uses this to guide her in the visit, showing what aspects to discuss ensuring that the HIV-positive clients are sustaining a healthy lifestyle. This is the first house of the day. Sometimes days are long, consisting of four or more household visits. Other days like today, Susan only has two.

HIV is a virus that attacks the immune system, destroying the T-helper cells, also referred to as CD4 cells, making copy of the virus instead which breaks down the immune system. Eventually, someone who is not receiving treatment would be unable to fight off infections and diseases, known as opportunistic infections.

Several years after being tested HIV-positive herself, Susan became a community volunteer at Baylor Uganda to help other people in similar situations. Baylor Uganda is a branch of Baylor International Pediatric AIDS Initiative at Texas Children’s Hospital (BIPAI). Other than in Texas and Uganda, BIPAI has branches in other African countries including Morocco, Liberia, Angola and Tanzania, as well as in South America, eastern Europe and Oceania. While the focus is on children and mothers, Baylor also helps families and men. The organization also pushes preventative measures to halt the spread of the virus.

Through training at Baylor, Susan knows how to conduct HIV tests, check medication, nutrition, hygiene and the appointment schedule of her clients.

She also knows how to put anxious clients at ease and assure them that help is available. Susan will soon have additional responsibilities because of a recent change to the community outreach model. It is now called the Differentiated Service Delivery Model (DSDM). DSDM will “decongest” the Baylor clinics by reducing the frequency of visits HIV-positive people with stable viral loads from every month or two to two times a year.

Clients will go to the clinic only for viral load tests, allowing the practitioner to assess whether the virus is copying itself in low amount and moving towards the goal of an undetectable level, and CD4 counts to check the number of CD4 cells in the body.

In between visits, it is up to community outreach volunteers like Susan to care for the clients. Home visits by the volunteers are a vitally important component of this treatment innovation according to Godfrey Okiron, field officer at Baylor of the Makindye division in Kampala, the capital city of Uganda.

The program aims to ensure that three goals are being met between medical visits. The home visit volunteers 1) help to ensure the clients attend their appointments and adhere to their medication, which the government provides, 2) let the clients know they are not alone in their treatment and 3) check that they are living a healthy, hygienic lifestyle.

Susan is just one of the many community volunteers of Baylor who visit members in their homes.

“Taaka is always there, even when you don’t want to go out,” Juliet*, the first client Susan sat down with, said after she made sure Juliet’s regimen was set.

Medication and appointment adherence

Sometimes Susan says a new client is, “too desperate.” When at this point, she tells them her own story to calm their fears.

In 2007, Susan’s husband became extremely ill with a CD4 count of 8. At this point in their illness, people would not come near them. They were being stigmatized not only by the community, but also by her husband’s parents.

It was Susan’s mother who encouraged her to continue after being stigmatized. She said that her mother took the children away so that Susan could focus on taking care of her husband until his health improved.

“All the kinds of support was from my mom, my own people – my sisters and brothers,” Susan said.

A year after her husband’s fate looked grim, Susan’s mother passed away. At this point, Susan lost hope and did not adhere to her prescribed medication well and had little motivation to go to her appointments. Susan has used this instance to connect with her clients, to give them hope and motivation to go to appointments.

One of the first tasks Susan performs is to check the client’s clinic book. This is especially important for clients like Lilian*. It allows the community outreach volunteer to feel confident that the client attended her last appointment.

Each clinic book consists of a printed appointment schedule, as well as the written date of the previous appointment proceeded by the follow-up visit. All visits are confirmed with a stamp from Baylor College of Medicine of Mulago (BCM of Mulago).

Lilian, like Susan, has also previously struggled with clinic appointments.

At the time, her husband was away, leaving Lilian alone at home to take care of her two children, her brother-in-law’s two orphaned children and herself with no financial support. When Lilian missed an appointment, it would not be long before Susan would come to her house, furious that the appointment was missed, and take the family to the clinic herself until they were stabilized.

“I’m very grateful for Susan and the work she has done,” Lilian said as her brother-in-law’s oldest child carries her baby sibling out of the dimly lit living room.

Susan sees most of her clients once a month. The only exceptions are those who are having trouble with clinical visits and medication adherence, who are then seen twice a month. Lilian used to be one of these clients. She no longer struggles with attending because of the support system she has been given through Susan.

While Susan has struggled in the past with medication adherence, she encourages her clients to look at the success she and her family has had with taking medication correctly.

Fifteen-year-old Chris*, a client of Susan, who has lived with HIV his entire life is a striking example at what adherence to HIV medication can do to assist in having a long, happy life.

Chris was only recently disclosed to about his status at 14, though he has been on ARVs since birth. He has been a client of Baylor Uganda for 10 years.

“When I found out, I wasn’t that devastated because I’d always been taking medicine,” he said.

Chris was formerly enrolled in primary school, but dropped out. It was quickly followed by an apprenticeship in craft making, focusing on making craft sandals.

He said part of the reason he decided to follow his passion was because of Baylor. Baylor helped him discover who he was as his own person.

At the moment, Chris is employed and focused on breaking into the local market. With two other people in his crew, they produce 500 pairs of sandals each week. Someday, he said he hopes to be his own employer as Susan nudged his shoulder with a smile on her face.

You are not alone

Susan has had difficulty concerning her immediate family, particularly with her daughter. She had to be strong, relatively quickly after her mother’s death, to provide her daughter with hope.

At two years, Susan’s own child, Adikinyi Annet was tested and found positive. She was also diagnosed with blood cancer. This is when, in 2009, the family was referred to Baylor Uganda for treatment, working with the Cancer Institute for further investigation on Adikinyi’s condition.

The first three times she was treated, there was no change in her status and they realized she was not responding. Since the fourth-time Susan brought her daughter in for treatment, the child’s health has vastly improved.

She explains to her clients how she felt when she was dealing with her diagnosis and how the infant she had then is now a healthy eleven-year-old daughter. Adikinyi is currently enrolled in middle school to further her education.

In 2002 when she was found positive, Juliet said there was an emphasis on children and pregnant mothers. Her daughter was started on ARVs that year while Juliet did not start until 2005.

After her child was admitted to Baylor, Juliet eventually asked if it was possible to join because her daughter was admitted. Since that point, both Juliet and her daughter have been patients of Baylor.

As Juliet was talking with Susan, specifically about when her child was coming of age and asking questions, her eyes welled up. Her daughter originally struggled with the medication, hiding her pills somewhere to avoid taking them. Juliet said she would ask questions like, “Why isn’t my brother like this?”

“I got courage and told her everything,” Juliet said as Susan grabbed her hand. “I keep on giving her hope.”

Healthy, hygienic life

Susan came to learn of her HIV-positive status in 2004 when she just went to check, without any signs or symptoms. Initially, her husband did not want to hear anything about the virus. She said he threatened to cut off her head if he saw her leaving their home in the Bugiri district near the Kenyan border to go to the facility.

Susan said she went around her husband’s threats, discussed her status with his parents initially, before turning to her own family.

“Then my mother say if your husband refuse, we are going to take you to Kenya,” she said.

It was these words that spurred her husband to agree to a checkup, where he was found positive as well. They were both given Septrin, an antibiotic used to treat HIV mainly in developing countries rather than in the U.S. due to side effects, to control the virus as well as counseled on how to keep a hygienic environment and good nutrition for the family.

Grace* similarly had a difficult time with her husband, although for different reasons. She went in for a check-up 10 years ago after having ulcers, leading doctors to suggest an HIV test. The results came back positive.

Her husband’s first wife was diagnosed and refused to accept the results. Her family claimed witchcraft. Not much later, the first wife passed. Although Grace was sad to definitively know the results, she said that she came in knowing the family’s status.

At this visit, Susan and Grace, along with Grace’s four-year-old son, celebrated the mother and child’s viral suppression after constant encouragement for medication adherence, clinic visits and providing a clean environment with the correct amount of nutritious meals each day. In fact, one of the aspects of the home-visits is to ensure there is a rubbish pit to keep the household clean, a latrine, clean water and good nutrition.

Although Susan was not the only factor in this case, she was an example to Grace that someone can live positively. Successfully. Happily.

As she leaves each household, Susan shakes her clients hand, puts her shoes back on and gives them a smile. There was never a household where Susan didn’t smile.

[*None of the names of Susan’s clients are their real names. Their identities are being concealed so they can avoid discrimination and harassment.]