When parents don’t tell doctors about traditional remedies, children suffer

Story audio is generated using AI

Many caregivers, especially parents of sick children, do not tell hospital staff when traditional African medicines or remedies were used and this silence can delay diagnosis and treatment or lead to dangerous drug interactions.

This is according to findings of a study done at Gauteng hospitals by a researcher from the University of Johannesburg (UJ).

For her study Dr Lindiwe Gumede interviewed 14 physicians from four selected district hospitals between November 2021 and July 2022 to establish if physicians were asking patients about the possible use of traditional medicine during the consultation.

Medical devices designed at the University of Cape Town could soon be used in South African public hospitals after the university’s Biomedical Engineering Research Centre (BMERC) secured a key manufacturing licence from the South African Health Products Regulatory Authority (Sahpra). The licence allows the research centre to manufacture, distribute and wholesale medical devices for which it holds registration certificates, opening the door for locally developed healthcare technologies to move from university laboratories into clinical use. Director of UCT’s BMERC Prof Sudesh Sivarasu said the milestone was significant for African health-care innovation. “In practical terms, it means the devices we design and develop here, for African patients in an African context, can now be produced and brought to market with the full weight of regulatory recognition behind them,” he said. Sivarasu said South Africa remained heavily dependent on imported medical devices, leaving the healthcare system vulnerable to supply chain disruptions and technologies not designed for local conditions. “South Africa imports the overwhelming majority of its medical devices, which leaves our healthcare system exposed to supply chain shocks and forces our clinicians to work with technologies that were designed, almost without exception, for high-income settings.” Without the ability to demonstrate that our devices were manufactured under a rigorous, audited quality management system, we could not ethically or legally deploy them with patients. This licence is our solution to that barrier He said BMERC and UCT MedTech had spent more than a decade building what he described as “one of the most productive academic medical device pipelines on the continent”. “At UCT MedTech and BMERC, we have spent more than a decade building one of the most productive academic medical device pipelines on the continent — 23 patent families, five spinout companies and more than 100,000 devices distributed globally," said Sivarasu. However, he said many promising innovations faced delays because the university did not previously have a certified manufacturing system that allowed devices to be produced for clinical use in South Africa. According to the university, the licence now allows BMERC to formally produce innovative devices tailored for African healthcare settings while strengthening quality assurance and local manufacturing capacity. Sivarasu said the licence also addressed patient safety concerns. “In the medical device sector, quality is synonymous with patient safety. Without the ability to demonstrate that our devices were manufactured under a rigorous, audited quality management system, we could not ethically or legally deploy them with patients. This licence is our solution to that barrier.” The facility will also help train biomedical engineers in a real-world, regulated environment and reduce reliance on imported technologies. Sivarasu said the achievement was built through years of collaboration between researchers, students, staff and institutions in South Africa and abroad. The next step would be turning prototypes into clinically approved products for use in South African hospitals, he said. “The immediate next step is to convert our pipeline of late-stage prototypes into clinically validated, locally manufactured products. With the SAHPRA licence in hand, we can move flagship devices from ‘bench-top’ to ‘bedside’ under our own quality system. “Our goal is that, within the next 18 to 24 months, devices manufactured at UCT’s medical school are in routine clinical use in South African public hospitals.” He added that the initiative aligned with the university’s mission to develop innovative medical technologies while improving healthcare access and patient care in underserved communities.

Gumede is head of department at UJ Faculty of Health Sciences’ Medical Imaging and Radiation Sciences.

In the journal article titled “Addressing communication dynamics in traditional medicine use disclosure to physicians”, Gumede’s interviews observed an absence of clear procedures encouraging patients to disclose their use of traditional medicines.

She said medical staff need to know about any type of medicine the guardian might have administered to the child, to avoid dangerous interactions between traditional and allopathic (Western) medicines.

The interviews showed cases where children suffered severe complications, including herbal intoxication and ICU admission, because doctors did not initially know what substances had been administered.

In South Africa, most guardians can be expected to use home remedies, including traditional medicine, before resorting to taking the child to a clinic or hospital.

A child diagnosed with cancer, leukaemia or a life-threatening heart condition is not the only one thrust into crisis: parents, siblings and caregivers often quietly carry the emotional and financial burden too, health-care experts warn. Yet South Africa’s health-care system continues to focus primarily on treating the patient, leaving families to navigate fear, exhaustion and disruption with limited support, according to health-care advocate and paediatric specialists. The call for a stronger family-centred approach to paediatric health care is gaining momentum, with experts arguing that improving a child’s medical outcomes also means supporting the people caring for them. Julia Sotirianakos, CEO of Reach For A Dream Foundation, said serious childhood illnesses affect entire households, altering family routines, finances and emotional wellbeing. “Parents or caregivers are often expected to hold their families together and earn a living, even as they carry the heartbreak of watching their child suffer,” said Sotirianakos. Long hospital stays and demanding treatment schedules can also take a toll on siblings, who may feel neglected or even blame themselves for their brother’s or sister’s illness. Despite this, health-care systems often treat the child in isolation. Family-centred care shifts that model by recognising families as part of the treatment process rather than observers. The approach encourages parents and caregivers to participate in decision-making, communication and care planning while ensuring emotional and psychological support accompanies medical treatment. Research increasingly supports the model, linking family-centred care to better treatment adherence, shorter hospital stays and improved quality of life for both children and their families. Dr Thandeka Ngcana, a paediatric oncologist at Chris Hani Baragwanath Academic Hospital, said emotional wellbeing and medical recovery are deeply connected in paediatric care. You heal a child better when you help the whole family stand strong. “Children depend on parents and caregivers for safety, comfort and reassurance, especially during long and difficult treatment journeys,” said Ngcana. Ngcana said when families were treated as partners in care, involved in decisions and supported emotionally, healthy professionals often saw reduced trauma, stronger trust and better treatment adherence. “You heal a child better when you help the whole family stand strong.” However, Sotirianakos said, implementing family-centred care widely in South Africa’s public health-care system remains difficult. Many hospitals are under pressure from limited resources, staff shortages and heavy patient loads, meaning immediate clinical needs often take precedence over psychosocial support. “Counselling services are frequently limited and may only be offered during moments of crisis or end-of-life care”, said Sotirianakos. Reach For A Dream, which has worked with children living with serious illnesses for three decades, says its programmes have shown how emotional support and shared positive experiences can strengthen resilience within families. One case shared by Ngcana illustrates the impact. She recalled treating a young leukaemia patient who became withdrawn after repeated hospital admissions. The child’s mother was unable to stay overnight because she had other children at home. After the hospital arranged temporary accommodation and included the mother more actively in daily care decisions, the child’s condition shifted. “The child began eating again, engaging during play therapy and responding more positively to treatment,” said Ngcana. The mother later described being “allowed to be a mom in the hospital” as the turning point in her child’s recovery. The child eventually went into remission. While experts acknowledge that overhauling South Africa’s health-care system is unrealistic in the short term, they argue that smaller interventions could still make a significant difference. These include creating more child-friendly hospital environments, strengthening communication with families, expanding psychosocial support and training health-care professionals to better understand family dynamics.

One of the physicians in the study told Gumede about a mother who brought a very sick, dehydrated baby to the hospital. When the doctor asked the mother about the child, she just said the child got ill but was evasive about having given the child some form of medication, traditional or otherwise.

“The child was unconscious,” said the physician in the research interview.

“The child had herbal intoxication like they’ve been given an overdose of some herbal drug. That child was going to the ICU. The mother kept on denying it [use of traditional medicine]. I was upset.

“The child ended up going to ICU in [one of the big Johannesburg hospitals]. The child stayed there for a month and was discharged,” the doctor said.

The doctor said the mother came back and confessed to using traditional medicine.

“... but at that time, I could not disclose because I could see you were angry,” she had told the physician.

Gumede said for a long time, traditional healers in South Africa were prohibited by law from practicing. In 1957, the apartheid-era government passed the Witchcraft Suppression Act. Sixty years later under democratic government, the Traditional Health Practitioners Act of 2007 formally established the industry.

“While the traditional healers were banned, they had to operate in hiding. Even if the family stays within walking distance of a clinic, they will try the family remedies first.

“For example, they may administer a traditional enema using lukewarm water for a baby with a high temperature,” Gumede said.

She said this could be effective and safe when done by an experienced person, usually an elder in the family.

“But it can go wrong when the required experience is not there, especially when traditional medicine is included.”

At one of the hospitals where Gumede interviewed physicians, the pre-procedure questions on forms were not specific to traditional medicine. Rather, the questions dealt with using over-the-counter medicines sold in pharmacies and supermarkets.

On your morning social media scroll, I’m sure you’ve already seen posts doing what they do best: spreading information that makes you wonder, “Wow, is that really true?” It might even have been on a frequent subject of misinformation: health. Maybe it was a personal story about someone’s sister or neighbour becoming sick after getting the Covid vaccine. Or a post claiming a medication causes the very condition it was designed to prevent. Warnings shared thousands of times by people who are scared or confused, not malicious. This is the information environment into which the new HIV prevention medication, lenacapavir, or LEN — the extraordinary twice-a-year injection that essentially eliminates the risk of getting HIV — is being introduced. Yet the excitement that we now have a pre-exposure prophylaxis (PrEP) product (medicine that prevents someone from getting infected with a germ like HIV before they get exposed to it) with the potential to stop the virus in its tracks doesn’t mean anything if people won’t take it. I’ve spent years studying health behaviour and know that take-up is never guaranteed, even when a health product is very effective and widely available. The gap between what a product can do and what communities actually do with it is where a large part of the fight against epidemics is lost. Misinformation is one of the main culprits in creating this gap. Getting ahead of misinformation on social media about LEN is one way we can help to ensure its success. And new research that my colleagues Alison Buttenheim, Harsha Thirumurthy and I have just completed with Indlela, the behavioural science unit at Wits University’s Health Economics and Epidemiology Research Office (HE²RO), provides a promising way to do just that. What we found In a paper we published in BMJ Global Health earlier this year, we mapped the landscape of emerging concerns and false claims already beginning to circulate about a future HIV vaccine. We found recurring claims, including that HIV prevention tools are designed to harm specific populations; that they cause the conditions they’re meant to prevent; that their side effects are catastrophic and concealed. But which ones would prevent a young woman from taking HIV prevention products? The results of our online survey, in which 188 young South African women rated 54 misinformation claims, surprised us. READ MORE: 9 lessons to make South Africa’s anti-HIV jab roll-out work We assumed beliefs that the vaccine could infect someone with HIV and other conspiracy theories would be more prominent; claims that a future HIV vaccine was engineered by foreign governments to sterilise Black women, for instance. But fears about catastrophic, terminal physical harm were what topped the list: that it “will kill you” and claims about liver, kidney and heart failure, bone marrow damage and cancer. Why safety fears hit hardest These findings align with a broader pattern we know from this age of vaccine hesitancy, itself driven by misinformation, and amplified during Covid-19. Safety fears were among the primary drivers of Covid-19 vaccine refusal; research in South Africa found that nearly 40% of those most resistant to the Covid-19 vaccine believed it could be fatal. This belief is partly a product of scale: when tens of millions of people are vaccinated over a short period, some deaths unrelated to the vaccine will inevitably happen shortly afterwards. Those coincidences become stories. Stories become posts. Posts become things that people see and share with others. The thing that a young woman hears from her friend or her aunt. And you can’t quite unhear it. Once misinformation takes hold, it is very difficult to dislodge even after repeated debunking. That’s just how human brains work. We process stories and emotional experiences far more powerfully than corrections. A vivid, frightening claim lodges in memory in a way that a later rebuttal simply cannot displace. READ MORE: Somebody call Hasina, the brain behind our LEN roll-out LEN has a few features that will make it particularly vulnerable to misinformation. One of the biggest worries researchers like myself and others have is that people will think of LEN as a vaccine — after all, it is an injection you take to prevent a disease. That’s a vaccine, right? But LEN is PrEP, and it works completely differently to a vaccine. A vaccine trains your immune system to protect you from a disease by making antibodies; PrEP blocks HIV from entering your cells and only works for as long as someone takes it. So misinformation about vaccines in general could be layered onto other misinformation about LEN: compounded misinformation. The psychological inoculation approach mirrors medical vaccination. You expose people to a weakened dose of misinformation by, for example, showing it in a context using humour that discredits the misinformation, alongside a clear explanation of the strategy used to manipulate attitudes, beliefs and behaviours before they encounter the misinformation in the real world. There is another feature that makes LEN especially vulnerable to misinformation or exaggeration: the injection can result in a visible nodule or bump under the skin. Most drug side effects are invisible — a headache, some nausea. This one can be photographed. I am genuinely worried about what happens when images of those nodules start circulating; just imagine the captions and the implications they will make that have nothing to do with clinical reality. Misinformation needs a grain of truth to hook on to. A visible lump under the skin is close to a perfect hook. Getting ahead of the spread Our team tested an approach called psychological inoculation, or pre-bunking, in order to make people less vulnerable to misinformation. We tested the approach with HIV vaccine misinformation because an HIV vaccine doesn’t yet exist, misinformation about it is emerging but hasn’t yet reached a point where many people have heard about it. The psychological inoculation approach mirrors medical vaccination. You expose people to a weakened dose of misinformation by, for example, showing it in a context using humour that discredits the misinformation, alongside a clear explanation of the strategy used to manipulate attitudes, beliefs and behaviours before they encounter the misinformation in the real world. You are building cognitive antibodies — the mental tools that help recognise and counter false information. We created 2.5-minute TikTok-style videos that featured the false claims along with an explanation of why the claims were false. In partnership with the production company Reel Epics, we co-created the videos through workshops with young women from an HIV service delivery organisation — who told us, bluntly, that our first scripts needed to be “de-Harvardised”, stripped of academic language before anyone would watch them past the first five seconds. The department of health, NGO partners, and community health workers all have roles to play, and they all need to recognise the need to act now and confront the threat of misinformation before it goes viral. In a trial with over 2,000 young South African women (18-29 years old), which is currently under review for publication, participants who watched the pre-bunking videos actually increased their intentions to accept a future HIV vaccine after seeing misinformation — while intentions among those who didn’t see the pre-bunking videos and only saw the misinformation were 13% lower than those who watched the video. Participants who saw the pre-bunking videos were also less likely to say they would share the misinformation if they encountered it on social media. The videos reduced the credibility of the specific claims they targeted, as well as of other claims containing different misinformation. And when we followed up three weeks later, the group that saw the pre-bunking videos continued to report intentions of getting an HIV vaccine higher than those who hadn’t seen the videos. Crucially, the videos worked best among participants who hadn’t received the Covid-19 vaccine — in other words, those already most hesitant to vaccinate — precisely the group most likely to be swayed by misinformation, and the group who therefore needs support to help ensure decisions about LEN are not biased by fake or misleading information. Why this matters Based on these results, we’ve already adapted the videos for LEN. The same format, the same persuasion technique framework. These videos are being shared on social media platforms by organisations promoting LEN, and are freely available for anyone to use. Now we’re in the early stages of a new study, squarely focused on LEN misinformation, that will extend our findings to a more diverse socioeconomic sample. We know that two short videos, however well-designed, will not solve a misinformation crisis on their own. Scaling this kind of intervention to reach the women who most need LEN — those in communities where health conspiracy theories already have roots, those less connected to digital platforms, those whose decisions are shaped by what they see and hear in their immediate networks — will require serious investment and coordination. The department of health, NGO partners, and community health workers all have roles to play, and they all need to recognise the need to act now and confront the threat of misinformation before it goes viral. I believe misinformation is one of the greatest threats to public health we face over the next decade. It doesn’t arrive after a product launches. It grows in the space between excitement and access, between announcement and take-up. The window for pre-bunking — before the false claims become entrenched — is open right now. Brendan Maughan-Brown is the chief research officer at Saldru at the University of Cape Town and a behavioural science technical expert at Indlela at the Health Economics and Epidemiology Research Office (HE²RO), University of the Witwatersrand

Gumede said at community clinics, physicians would ask “are you taking any other medication” but also would not ask specifically about traditional medications.

The researcher discovered it was necessary to ask non-direct, non-prejudiced questions.

One physician said: “If you ask the patient directly, they will not disclose unless they believe you are receptive. If I’m curious, I’ll tell the patient that most of my patients take traditional medications. So, when they know they are not the only ones using traditional medicine, they reveal it. But if I simply asked, they would not reveal.”

Several physicians interviewed also stressed the importance of creating a safe, non-judgmental environment where patients feel comfortable disclosing traditional medicine use.

Gumede said if information about common traditional medicines used by patients was included in the training of physicians, it would be easier to facilitate transparent cross-practice communications between physicians and traditional healers.

“Collaboration like that can go a long way to ensure better patient outcomes,” Gumede said.

TimesLIVE