Part one | Home-based care a lifeline to migrants

In this first of a two-part series, New Frame follows the invaluable help provided to refugees and other migrants who are ill and neglected by state health services.

It was the first day in weeks that Jean Kahambano had been able to get out of bed. In a lot of pain, he shuffled with his crutches from his room and struggled down the few steps to the front gate to open it for his caregiver, Amita Ngaziami. “You’re outside. I’m happy to see you walking,” said Ngaziami. 

Kahambano, 40, has advanced skin cancer that has left his left leg swollen from the knee down and his skin with painful growths. The cancer is on his right leg as well, but his left leg is the most affected. He is also dealing with other health complications, and most days he’s in too much pain to leave his bed.

Originally from Kasinga in the eastern part of the Democratic Republic of Congo (DRC), Kahambano fled to South Africa a decade ago as the violence between armed groups in the region reached his home. “People were killed in front of my eyes,” he said, leaning against a pillow on his bed. “I fled because of that fear. You ask [yourself] if you [should] stay and see yourself getting killed or you run away? I had to run away.”

Kahambano found work as a security guard in Johannesburg and worked at a residential housing complex until he became ill. He first noticed a black mark on his left leg in August 2019; later it became painful to walk. 

15 February 2021: Jean Kahambano, a refugee from the Democratic Republic of Congo, leads caregiver Amita Ngaziami to his room. He has only recently begun to walk again using a crutch.

“I didn’t take care of it and thought it would pass,” he said, as Ngaziami was busy washing his dishes in another room. “I didn’t have the courage to go and ask for help. I thought it would pass but then it got very bad very quickly.”

The following month he was connected to the Jesuit Refugee Service (JRS), which helped him get to a doctor, who diagnosed skin cancer. Since then, Ngaziami, a home-based caregiver for the JRS, has been seeing Kahambano a few times a week, accompanying him when he goes to hospital, offering counselling and assisting with chores around the house such as cooking and cleaning.

Reluctance and resistance

One of Ngaziami’s biggest challenges working with Kahambano has been his reluctance to follow the doctor’s advice and confirm a date to have his leg amputated. Instead, Kahambano sought treatment from a traditional healer, who told him to rub household disinfectant and methylated spirits on the affected skin. This treatment, Kahambano believes, is working on the cancer on his leg. “I keep going to the hospital but I am scared they want to cut my leg,” Kahambano said. “I think it is better to die with my two legs.”

Despite the health complications, Kahambano remains optimistic about his future and believes he will be able to walk again unaided. “Sometimes when things like this happen to you, you ask, did God forget about me? But He never forgets,” Kahambano said. 

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Ngaziami, who is one of nine home-based caregivers working for the JRS assisting patients with various things from basic healthcare and counselling to delivering food parcels and helping with rent, says one of the most difficult parts of her job is ensuring that people follow doctors’ medical advice and do not default on their medication.

“With people like Jean, I can’t fight with them if they don’t want to listen. I try to talk to them, counsel them and give them the right advice. But if they don’t want to, there is nothing I can do,” she said. 

The JRS’ health programme, which provides healthcare and other services to mostly migrants and refugees, was started about five years ago. Social worker Barnaby Kangoni, health manager at the JRS, says it was started when they realised refugees and asylum seekers were not always able to access sufficient healthcare services. 

15 February 2021: Amita Ngaziami examines Jean Kahambano’s legs, which have been severely affected by advanced skin cancer.

“It’s been a challenge for the refugees and asylum seekers, in fact for all migrants, in accessing what you call tertiary healthcare services. There are some people who have complicated illnesses like kidney failure, cancer and so on, and those people require treatment that is so expensive and they can only access that if they pay a certain fee that is charged at the hospitals,” Kangoni said. 

Kangoni says the JRS hopes to expand the programme, but in the meantime it has prioritised the most vulnerable cases. These patients receive home-based care, especially if they don’t have a caregiver at home. “Those are the cases that they visit in the communities where they work. And those who have caregivers at home, we are trying to train the caregivers so they can help the people at home,” he said. 

Someone to talk to

Patrick Ilunga, 34, came to South Africa as a refugee from the DRC about 10 years ago. He qualified as a nurse in his home country, but his qualification is not recognised in South Africa and he’s been unable to find work. Instead, he has become a home-based caregiver for the JRS.

“We do counselling, we provide psycho-emotional support to the patient. You know we are dealing with some distressed people who are staying in their house alone. They just need somebody to be there for them… and some days they just need someone to talk to,” he said.

Jo Vearey, director of the African Centre for Migration and Society (ACMS) at the University of the Witwatersrand, says home-based caregivers and community health workers such as Ilunga and Ngaziami play an important role in supplying care and support to migrant groups. 

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“One of the important things there is obviously not only about people who might face challenges in physically accessing clinics and so forth, but we also know that some migrants face challenges and difficulties – discrimination or stigma – when they visit facilities. 

“So the fact that there might be community health workers who are able to provide that support directly is likely very beneficial to that individual. It also assists with building up community; it assists in ways to help ensure everybody receives the care they need,” she said. 

Accessing healthcare, especially life-saving treatment such as dialysis or cancer treatment, can often present numerous challenges for migrants, especially refugees and asylum seekers. “Whilst the law is clear and whilst the various legislative frameworks are clear about the right to access healthcare for all in South Africa, different migrants and different categories hold different rights to access care,” Vearey said. 

She says although the law is clear about the healthcare the different categories of migrants can access, it is not always so clear in practice. “At the high levels of care, in the same way as South African citizens, healthcare users undergo a means test to determine what their co-payment should be. And different categories of migrants are categorised in different ways,” she said. 

Like family 

For Jean-Pierre Mayula, 58, who has had two strokes in the past three years and has no family in South Africa, Ilunga has become more than just a caregiver; he is a family member. Mayula fled the DRC with his family to Angola, and later moved to South Africa leaving his children in Angola. He now shares a room in an apartment with another man, while different families live in the two other rooms. 

He was responding well to the physiotherapy he was getting from Ilunga until the second stroke in December. “He was completely paralysed on the one side after the second stroke. We are making progress, but he is still struggling with speech and being able to move properly,” Ilunga said. 

“His kids are in Angola and it’s just him here. So I will check his vitals today, monitor his blood pressure and sugar levels and I will make sure he has enough food until I come again. He has no one else to rely on.” 

28 January 2021: Home-based caregiver Patrick Ilunga guides stroke sufferer Jean-Pierre Mayula through a rigorous physiotherapy session.

Ilunga visits Mayula three times a week and makes sure his basic needs are met, including helping him to bathe and get food and doing the necessary physical therapy. Using Ilunga as a translator and struggling to speak as tears welled in his eyes, Mayula said: “It’s very difficult. It’s very tough. It’s really hard to explain [what’s been happening to me].”

Ilunga says his own experience as a refugee has been invaluable in building relationships with his patients and earning their trust. “You are working in the house of somebody so you need the trust of that person,” he said. 

“You know these people are refugees and are sometimes discriminated against. So you need a person who speaks their language, who can understand the life of a refugee so they open up easily and understand what is their problem. When I have gone through the same experience as them, it is easy to open up to [me].”

28 January 2021: Patrick Ilunga massages Jean-Pierre Mayula’s shoulder after their physiotherapy session. Mayula, who is from the DRC, first fled to Angola and then moved to South Africa.

Stressful situation

Another one of Ilunga’s patients is Xavier Adenasi, 58, who is recovering from a severe stroke. He was a political activist in the DRC before he was forced to flee in 2013, with his wife and two children following later. The family lives in a small room in a run-down apartment block in Yeoville.

“It’s been really difficult seeing what’s happened to my father,” said Adenasi’s youngest son, 20-year-old Gedeon. “My mother got hospitalised with high blood pressure because of the stress. Back in the Congo, he was a teacher. But now we have to teach him everything. It is like we have taken the role of the father.” 

9 February 2021: Patrick Ilunga works to help rehabilitate Xavier Adenasi, who had a severe stroke. Adenasi’s family of four shares one small room in a Yeoville apartment block.

No one in the family has full-time employment and they rely a lot on help from the JRS, but Gedeon’s mother Regine Abisi and his older brother Levi sometimes find work doing odd jobs. Gedeon was in matric last year and because he spent most of the time schooling from home, he could help with some of the basic care his father needed. 

But they still rely on Ilunga to provide the necessary physical therapy. On the day of New Frame’s visit, Adenasi groaned as he struggled through the exercises. He spends most of his time in a wheelchair, but Ilunga made him walk a few steps with a walker. By the end of the short walk from his bed through the kitchen to where the family’s washing hung – no more than 10m – Adenasi slumped in a chair, exhausted. But Ilunga remained positive, encouraging Adenasi to stay strong.  

9 February 2021: From left, Xavier Adenasi’s son Gedeon watches as his father tries to walk with the help of a frame as part of his rehabilitation exercises.

Beyond therapy

Not all of their patients require such intense care. Some patients like Serge Kipayi, 43, are able to administer their medication themselves, but Ilunga and Ngaziami often just spend time with them, checking if they’re coping with the stress of surviving during lockdown as well as ensuring that their living spaces are cleaned.  

Kipayi, who has been in South Africa since 2002 after he fled the DRC, has been receiving treatment for renal failure for the past three years. He rents a room in a house in Bezuidenhout Valley that he shares with a number of other migrant families. 

Half of his small room is stacked to the ceiling with all the medical supplies he needs for his peritoneal dialysis treatment, which he needs to do four times a day. Ngaziami isn’t able to see Kipayi every day, but on the days she does she helps to clean his room and ensures that the peritoneal catheter through which the dialysis treatment is done is clean.

28 January 2021. Amita Ngaziami assists Congolese migrant Serge Kipayi with his kidney dialysis process during electricity loadshedding. Kipayi has life-threatening kidney failure.

“I have to do this four times a day: at 8am, at noon, at four in the afternoon and again at 8pm. I can’t go anywhere or even find work because I need a clean environment to do this,” Kipayi said. 

In the beginning the procedure was painful, says Kipayi, but he has grown used to it. He has to shake and contort his body at various angles to drain out all the fluid that removes waste products from his blood. After that, a new bag of fluid can be filtered in through the catheter in his abdomen. 

He says he was rejected from dialysis treatment in hospital because he is not a South Africa citizen. “So now I have to do this,” he said. “If I stop this, I can die.” 

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