Mothers on the edge: The hidden toll of childhood cancer care

The boy is barely five. He shifts in discomfort, too tired to cry. She adjusts his blanket, checks the line and reaches for a notebook to track his medications.

No one trained her to do this. Yet each day at Kenyatta National Hospital’s children’s cancer ward, she has learnt to act as a nurse, counsellor and caregiver, all at once.

This scene repeats itself across the paediatric oncology ward. Mothers carry the weight of their children’s illness in ways that stretch far beyond love and duty.

A new study shows that as these children fight cancer, these mothers are quietly becoming patients too, worn down by stress, exhaustion and the unending demands of care.

Researchers are now demanding that these mothers should get legally paid leave from their workplaces.

They found that one in 10 caregivers at the KNH are married women aged 20 to 40 years, mostly taking care of young boys.

Many take on roles that include clinical care without formal training, adding to the strain they already face.

Doris Machaki, lead researcher and an oncology nurse at Aga Khan University Nairobi, and her colleagues said their findings point to a hidden crisis within the health system.

“Our study found that most primary caregivers of children with cancer were middle-aged, married mothers, caring for boys aged one to five diagnosed mainly with haematologic (blood) cancers,” they said.

 “The burden of care on caregivers of children with cancer is significant and has a negative impact on their quality of life.”

Their report is titled ‘Burden and quality of life among caregivers of children diagnosed with cancer at Kenyatta National Hospital, Kenya.’ It was published in Palliative Care and Social Practice last month.

Machaki and her colleagues examined the experiences of select caregivers at KNH paediatric wards.

They found that the caregivers not only assist with daily living activities but also perform both clinical and non-clinical care duties, sometimes carrying out responsibilities typically reserved for trained healthcare professionals. These include providing comprehensive nursing care often without formal training.

 “These responsibilities have been shown to result in psychological and economic challenges, including job loss, emotional distress and increased anxiety, all of which add to the caregiver’s burden and negatively affect their quality of life,” they said.

They interviewed 124 caregivers between October 2023 and January 2024, using standard tools to measure caregiver burden and quality of life. Caregivers with their own histories of mental illness or cancer were excluded to ensure clear findings.

Nearly half of the caregivers reported mild to moderate burdens, while a quarter experienced moderate to severe burdens, and others faced severe levels.

Their quality of life was also affected, with many reporting disrupted routines, mental strain and uncertainty about the future.

Machaki’s team explained that most participants felt abandoned by friends and neighbours.

“Support from family members is essential for caregivers during the diagnosis and treatment of childhood cancer, as it provides psychological and financial support as well as care for other children at home,” they said.

“Most participants indicated a lack of support from family members, which could negatively affect caregivers’ well-being during the caregiving period.”

About 3,000 Kenyan children are currently living with cancer, according to the Ministry of Health’s Kenya Cancer Policy 2019-30.

Many come from families already facing financial hardship and limited access to health and social services.

The study also found that employment had a complex effect. Caregivers who were employed reported lower levels of burden, likely due to financial support. However, their overall quality of life was lower, as they struggled to balance work and caregiving.

“Juggling two demanding, full-time roles — as an employee and caregiver — results in severe time constraints and work-care conflict,” the report read.

“Employed caregivers frequently sacrifice time needed for self-care, sleep, leisure, and personal appointments. This chronic time poverty directly lowers their quality of life in the physical, psychological and social domains,” Machaki’s team said.

The other researchers are Samwel Gatimu from the Diabetes Foot Foundation, and Albanus Mutisya, Jostine Mutinda and Sherry Oluchina, all from Jomo Kenyatta University of Agriculture and Technology.

Another key finding was that children undergoing multiple forms of treatment placed greater strain on caregivers.

Combined treatments such as chemotherapy and surgery increased the demands of care and added to emotional and physical stress.

The study was conducted in a single hospital, which may limit how widely the findings apply across the country.

The National Cancer Institute (NCI) said the survival rate for such children in Kenya is between 15 per cent and 45 per cent.

“This compares to a survival rate of more than 80 per cent in high-income countries,” it said.

“We continue to raise awareness about childhood cancer and express support for children and adolescents with cancer, survivors and their families,” NCI said.

 “This is in line with WHO’s Global Initiative on Childhood Cancer, which aims to reach at least a 60 per cent survival rate for children with cancer by 2030.”

Machaki’s study calls for measures such as flexible work arrangements and paid family leave so that caregivers can balance employment with hospital responsibilities.

It also highlights the need for psychoeducation, meaning caregivers should be trained and guided on how to manage their child’s condition and treatment at home.

“The burden of care on caregivers of children with cancer is significant and has a negative impact on their quality of life. To help reduce this burden and enhance caregivers’ well-being, we recommended interventions such as flexible work arrangements, paid family leave, psychoeducation, and accessible respite care.”