Peer-Led Recovery Groups Show Promise in Keeping Schizophrenia Patients Out of Hospital in South Africa

Getting to the hospital was the hard part. Phumelele Ngalo would spend far too long coaxing his younger brother Lithemba to get dressed and washed in their home on the outskirts of Gqeberha. Then, about halfway to the taxi stop, Lithemba would halt and stare at him, refusing to move. Phumelele describes it as less defiance than disappearance. He would snap, then walk back, take his brother by the hand and lead him the rest of the way. In the waiting room, Lithemba would get up and move to another seat. "Why can't you just be steady?" Phumelele remembers thinking.

Phumelele, now 37, has been Lithemba's main caregiver for ten years, since a doctor finally named schizophrenia. For years the family had believed it was severe depression that kept Lithemba shut in his room, motionless, refusing to speak or bathe. The brothers shared a bed growing up. Both parents had died before the diagnosis, and the two lived with an older sister and her family, but Phumelele was the one Lithemba listened to when he was unwell.

Lithemba has now been gone for more than a year, back in the inpatient mental health facility across town. Phumelele says his brother recently asked on the phone when he would come to discharge him. He answered that he needs a report from the psychiatrist, and that when Lithemba comes home he must take his medication or he will end up back there. The brothers are caught in a revolving door that moves Lithemba between home and long-term facilities.

Schizophrenia brings hallucinations and delusions, and in some people, like Lithemba, catatonic withdrawal. Like diabetes or heart disease, it can usually be managed with medication and healthy living: good food, regular sleep, exercise. Without that, psychosis can take hold. Many people stop their pills once they feel better, or because the drugs leave them tired or with shaking hands. Family caregivers help with bathing, dressing, eating, clinic visits and money, and that support, with medication, is what keeps people out of long-term facilities, where beds are scarce and care is costly. Yet in the public sector, Phumelele says, outpatient support often means a refill, a stamp and an instruction to return in a month.

Charlene Sunkel says that is not enough. She founded Aves Mental Health, formerly the Global Mental Health Peer Network, in 2018, and it is made up entirely of people with lived experience of mental illness. It trains advocates, mainly in low- and middle-income countries, who train others, and works with the World Health Organization and Harvard University. Sunkel was told when diagnosed that she had no rights, could not go anywhere unaccompanied and would achieve nothing; she says she lost about nine years to that mindset. Her model resembles Alcoholics Anonymous: peers share experience, and the experts are people like them.

That approach was tested in the Prize study, co-led by Carrie Brooke-Sumner of the South African Medical Research Council and Laura Asher of the University of Nottingham. It asked whether peer-led recovery groups could work in Eastern Cape townships, where poverty is high, education low, and family is often the only support beyond a disability grant. Researchers first interviewed caregivers and people with mental health conditions, including the Ngalos. Gill Faris, a former psychiatric nurse, helped turn the concepts into everyday language. Social workers were trained first, then taught people with lived experience to lead the groups. The materials, in isiXhosa and English, use stories such as Nomzamo, who cares for a tired adult son; Gcobani, who is looked down on and excluded from decisions; and Ntando, who is budgeting and considering a stokvel after years of struggling with alcohol and dagga. They also helped members set short-, medium- and long-term goals.

The groups ran from April 2022 to February 2023 at seven sites in Nelson Mandela Bay, with 92 isiXhosa-speaking people living with psychosis and 47 caregivers. Social workers from Indlela Mental Health partnered so the groups could continue afterwards. Only 2% of those on medication who attended groups relapsed into psychosis during the study, against 17% on medication alone. Group members who worked took about 1.5 days off a month, compared with eight.

The two-hour sessions, led by a social worker for two months and then a peer for three, opened with a traffic-light check-in: green, orange or red, red meaning being unable to bathe, cook or work. They ended with shared snacks of bread, polony, cheese or peanut butter and jam. Project manager Bongwekazi Rapiya says the food helped people take their medication, since some had none at home. The open question is whether the groups survive beyond the study and whether public services adopt them.