After months of gruelling treatment, Kenyan children who survive cancer often face another cruel reality, stigma from former friends, some relatives and members of their community.
Many are forced to repeat classes and don’t want to return to school because classmates, even some teachers, want to avoid them.
These findings are contained in a new study that explores the challenges child cancer survivors face as they try to reintegrate into society.
It also explores the experiences of their caregivers.
The study, titled “A caregivers' perspective on social reintegration and stigma of childhood cancer survivors in Kenya” was published in the Psycho-Oncology journal last week.
The authors are from Moi University, Kisii University, Ampath Eldoret, Princess Máxima Centre for Paediatric Oncology, and Emma Children's Hospital, both of the Netherlands; and Indiana University’s School of Medicine in the US.
The study involved interviews with caregivers of 54 childhood cancer survivors under age 18.
Globocan estimates about 3,000 new cases of childhood cancer cases are diagnosed each year in Kenya. The numbers are believed to be underestimates as not all cases are reported to national cancer registries.
The study also revealed job losses and reduced income, discrimination and social ostracism.
"Most survivors’ families endured significant financial hardship," the study states, with 93 per cent of them experiencing a decrease in income since the start of treatment. Additionally, 44 per cent of caregivers lost their other jobs because of contact with the child and her or his family.
This financial burden often led to conflicts within communities, and 88 per cent of families found it challenging to meet basic needs, including paying school fees for the former patient and siblings.
Stigma is pervasive. The authors found 26 per cent of families received negative responses from their communities after disclosing their child's cancer diagnosis, and 13 per cent were abandoned or avoided by community members.
"Survivors and families were discriminated against because the child was perceived as fragile, and cancer was considered fatal, contagious, or witchcraft," the study said. This led to social exclusion and bullying in schools.
“This stigma resulted in significant setbacks in education for many survivors. More than (58 per cent) had to repeat school levels, 19 per cent were excluded from school activities, and 13 per cent were bullied by their peers.
Only 20 per cent of the children survive, the Ministry of Health said.
Several factors were associated with increased stigma, including performance limitations in daily activities, being male, having solid tumours, and a shorter time period since treatment completion.
These factors underscore the need for interventions to support survivors during their reintegration into society.
Caregivers now recommend educational programmes in schools and communities to raise awareness about cancer treatment and curability. "Increasing cancer and survivorship awareness in schools and communities should facilitate social reintegration and prevent stigmatisation," they suggested.
The study also found that stigma levels were comparable to those faced by cancer patients in other low and middle-income countries but were higher than those reported by North American prostate cancer survivors. This indicates a significant cultural and contextual gap in how cancer is perceived and addressed globally.
The economic impact of cancer treatment was profound, even for those with insurance. Many families lived just below the poverty line, and while cancer treatment was covered by the National Health Insurance Fund, 27 per cent of insured survivors were only enrolled after diagnosis.
That’s when many expenses had already been incurred. This limited coverage often left families struggling to afford necessary treatment and care.
Researchers emphasised the importance of community-based programmes to address these challenges. Advocacy and support groups, similar to those in other countries like India, could provide valuable resources for Kenyan survivors and their families. These programmes could offer peer support, advocacy, and holistic care, helping to rebuild self-esteem and promote social reintegration.