Why South Africa’s healthcare system must put families at the centre of paediatric care
By Julia Sotirianakos, Reach For A Dream CEO
Treatment for a serious illness like cancer or a congenital heart condition turns life upside down for a child. In addition to the physical pain they face, they experience fear, confusion and the loss of normal childhood rhythms. But a child is not sick in isolation, their chronic or life-threatening conditions also affect the emotions of their families and can change the atmosphere of the whole household.
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. During long hospital stays or intense treatment periods, siblings may feel forgotten or overlooked and even blame themselves for their brother’s or sister’s illness. Yet despite this, traditional healthcare systems continue to treat the child in isolation, revealing critical gap where meaningful change is needed.
The skill and compassion of the doctors and nurses in our paediatric hospitals is extraordinary, especially given the constrained resources many of them are working with. However, what is often missing is a focus on family-centred care. Families navigating a life-threatening diagnosis are often left to do so with little external help. This gap highlights the need for a more holistic approach to care, one that recognises the role of the family in a child’s treatment journey.
In paediatric healthcare, family-centred care is a shift from treating the child as a standalone patient to recognising the family as part of the care system. It is an approach that involves parents and caregivers in decision-making, acknowledges family dynamics and provides psychological support alongside medical treatment.
Seeing the family as partners in treatment
There is a growing body of research validating on this concept. The evidence suggests that family-centred care improves clinical outcomes by enhancing treatment adherence, reducing hospital stays and minimising the risk of complications, while also contributing to mental wellbeing and better quality of life for children and their families.
In this framework, the family is regarded as an active participant in planning, delivering and evaluating care. The philosophy is that a sick child’s needs are best met when the healthcare service system supports the family’s ability to care for them. It encompasses child-friendly environments, psychosocial support, information-sharing, and communication that treats parents as partners.
Dr Thandeka Ngcana, Paediatric Oncologist at Chris Hani Baragwanath Academic Hospital, agrees that family centred care plays a critical role in improving outcomes for seriously ill children because emotional wellbeing and medical recovery are closely linked.
“Children depend on parents and caregivers for safety, comfort and reassurance, especially during long and difficult treatment journeys. When families are treated as partners in care, involved in decisions and supported emotionally, we often see reduced trauma, stronger trust and better treatment adherence,” she says. “You heal a child better when you help the whole family stand strong.”
Barriers to family-centred care
Implementing family-centred care at scale will not be easy in South Africa’s public healthcare system. Many hospitals are under-resourced and need to manage high patient volumes with overstretched staff. All too often the limited resources will need to be focused on immediate clinical priorities.
Psychosocial support is often scarce, and counselling tends to be reserved for moments of crisis or end-of-life care. These constraints make it even more important to adopt approaches that improve both clinical and emotional outcomes without placing significant, additional strain on the system.
There are also practical barriers. Many families live far from the paediatric hospitals in the urban centres, making consistent involvement difficult. They may face challenges, such as poverty and deprivation, depression, substance abuse or gender-related violence, that are exacerbated by the strain of caring for a sick child.
Social workers and healthcare professionals carry heavy workloads and often lack capacity to address these dynamics. These realities highlight why supporting families cannot be seen as an added extra, but rather as a necessary component of effective care.
Our experience at Reach For A Dream highlights why interventions that support the emotional wellbeing of children and their families are essential.
Shifting the family outlook
For three decades, Reach For A Dream Foundation has worked alongside children and families contending with the reality of serious illness. Through dream fulfilment and hospital-based programmes, we have seen how moments of joy and recognition can shift a family’s outlook. Our Beneficiary Impact Study confirms that these interventions contribute meaningfully to emotional wellbeing, resilience and family relationships.
While not a healthcare provider, Reach For A Dream’s work demonstrates the impact of supporting families as part of the care journey. This underscores the powerful role that emotional and psychosocial support can play alongside clinical care. Creating memories through our programmes offers psychological benefit long after the moment has passed. We bring hope into hospitals and create shared experiences that help families to face a child’s illness together.
Dr Ngcana describes the case of a young leukemia patient who struggled with treatment and became withdrawn after repeated hospital stays. “The child’s mother could not stay overnight because she had other children at home. Once we arranged temporary accommodation and actively involved her in daily care decisions, the
child’s entire outlook changed,” she says.
The child began eating again, engaging during play therapy and responding more positively to treatment. According to Dr Ngcana, the mother later described being “allowed to be a mom in the hospital” as the turning point in her child’s recovery journey. “That child eventually went into remission, and years later the family still speaks about the importance of feeling supported and included during treatment,” she says.
It is important to be realistic about the prospects for overhauling the system to provide family-centred care. Yet small steps towards this model can make a big change. Creating more child-friendly hospital environments, strengthening communication with families and expanding access to psychosocial support will make a meaningful difference. Training healthcare professionals to understand family dynamics is a practical starting point.