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.
— Julia Sotirianakos, CEO of Reach For A Dream Foundation
“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.
Would you like to comment on this article?
Sign up (it's quick and free) or sign in now.
Please read our Comment Policy before commenting.