Who cares for the caregivers?
Ruth Mufalali Van Rooyen was worried. One of her most dedicated volunteers was distraught. A young girl the volunteer was helping was very sick. “The volunteer was in tears on a daily basis because she was really worried that this child was not going to make it,” says Van Rooyen, who manages South African Red Cross Society volunteers who provide home care to 50 patients with multi-drug resistant tuberculosis (MDRTB) near Port Elizabeth, South Africa.
For the volunteer, who had been visiting the girl every day for over a year, ensuring she took her medicine and cared for herself, it was like losing a loved one. Fortunately, a few months earlier, Van Rooyen had sought out a volunteer psychologist to offer free counselling sessions for all the caregivers at the local Port Elizabeth and Uitenhage branches. “Through sessions with the counsellor and fellow volunteers, she kept going,” says Van Rooyen. “Today, this child is cured.”
Van Rooyen’s decision to seek out support is one example of a growing recognition in humanitarian circles that helping communities get healthy requires healthy caregivers, able to remain calm and compassionate despite the many pressures they face. After all, most volunteers on the front lines of today’s crises usually come from the same community as the people they serve. They are affected by same worries and challenges. Photographer and documentarian Alexia Webster talked to some of the South African TB caregivers. Here’s what they have to say.
Jeanette Mqaqa, 45, became a caregiver because she likes teaching people how to better care for themselves and move forward in their lives.
“When people pass away, it’s sometimes very difficult. It’s like you’re not doing your job.
Sometimes I go to the others and say, ‘This person is defaulting [on their medication regime]. Maybe I think, ‘Hey, this person is a defaulter and I blame myself. Maybe she’s a defaulter because of me. Maybe she doesn’t like me.’
“To deal with the stress, sometimes I go to church. There’s a kid’s club; we educate the children and then I play with them. I sing and talk with the people and the stress is relieved. I have also done a group session with the Red Cross psychologist. I’ve learned that I have to carry myself before I can carry others.”
Lindeka Nkumanda, 41, says she’s an empathetic person by nature with a long-time interest in psychology and in caring for people.
“There are cases where the client’s condition gets worse and sometimes I cry. Like the cases where a client was a mother, a single mum who’s got kids… and the mum is going to pass away. Who is going to look after the kids and what kind of care are the kids going to get? In those cases I cry a lot… but not in the presence of a client because I don’t want her to lose hope. I have to wear a mask and stay strong for the sake of the client.
“The most interesting thing we learned from counselling was how to cope with stress — like what we can do to assist ourselves before visiting clients. Because we won’t be able to help others if we are not in a good way. You have to know your weaknesses and your strengths. And not to take things personally. Don’t blame yourself for things that are out of your control… You have to just let go.”
Akhona Williams started volunteering with the South African Red Cross in 2016 after finishing a university degree in psychology. Now a masters student in the psychology department at Rhodes University, he offers free counselling sessions to the multi-drug resistant tuberculosis caretakers.
“Their job is very stressful and complex psychologically because if someone is really ill, and has the potential to infect the whole house, the other family members, how do you get that person to take the treatment without actually forcing them? I mean they have this individual right, but at the same time they’re endangering other people’s lives. So those are also some of the factors that the caregivers bring up in the debriefing sessions.
“Through these sessions, I try to find out where everyone is mentally and emotionally and then build a supportive environment. Depending on the major things that come from the debriefing, we work to find solutions. Let’s say they have a problem with a client or a patient who doesn’t want to adhere to treatment. We try to find ways the volunteers can help without forcing them.”
As provincial programmes manager for the South African Red Cross, Ruth Mufalali Van Rooyen coordinates the volunteers who care for people infected by HIV, tuberculosis or other chronic illnesses.
“Tuberculosis (TB) is a disease that takes over six months to cure and the clients are people you see from Monday to Friday for the duration of the treatment period. So naturally, there will be a very strong relationship or bond. When there’s a negative outcome, it really affects you.
“TB is a disease that is curable, and it can get frustrating especially when you know that. If you’re in a situation where you’re trying to educate and encourage somebody to take treatment for a disease that is curable, and they don’t listen… it’s a sad reality. That takes a toll. And when a patient dies, the volunteers feel like they didn’t do enough.
“To help volunteers cope, I try to ensure they have adequate education and training in TB and home-based care, as well as monthly counselling sessions. After the counselling, you can see a difference in the way they apply themselves and the way they handle their patients. The nurses say, ‘Your volunteers know exactly what it is that they’re doing. When they’re called, they always respond with a joyful heart.’”