Childhood cancer treatments cause long-term effects, including persistent stigma. Social reintegration of childhood cancer survivors in sub-Saharan Africa requires closer attention.
Childhood cancer treatments cause long-term effects; social reintegration of childhood cancer survivors in sub-Saharan Africa requires closer attention. Photo: Kelly
Childhood cancer is a rare disease that is often overlooked and underdiagnosed in sub-Saharan countries like Kenya. Contrary to popular belief, childhood cancers like leukaemia (acute lymphoblastic leukaemia or acute myeloid leukaemia), lymphomas (non-Hodgkin lymphoma or Hodgkin lymphoma), or kidney tumours (Wilms tumour) have a reasonable or even good chance of survival. Hope for a healthy life after overcoming the disease serves as a motivation for these children to bear the severe side effects of treatment. This hope also helps caregivers cope with the uncertainty and anxiety of a child affected by a life-threatening disease, in addition to enduring the financial challenges associated with accumulating hospital bills.
Since 2010, an increasing number of children and caregivers at Moi Teaching and Referral Hospital (MTRH) in Eldoret in western Kenya are receiving the much hoped for news that the cancer has disappeared. This means that the child can be considered cancer-free, and the family is sent home to resume their former life.
This might be a challenge for some, as childhood cancer survivors are known to experience late and often long-term effects resulting from their treatment. These symptoms may appear at a physical level (heart failure or infertility) or at a neurocognitive (fatigue or memory) and psychosocial (anxiety) level. The survivors often require continuous support from the healthcare system and their social network to overcome these challenges.
Nevertheless, the reception of childhood cancer survivors in Western society is generally inclusive and mild. The social reintegration of childhood cancer survivors and their families in sub-Saharan Africa is a relatively understudied topic. While the stereotype of a cancer survivor in Western high-income countries is that of a hero with the strength and perseverance to win a hard-fought battle, the low- and middle-income country (LMIC) survivor is seen differently.
Stigma is also linked to supernatural beliefs associating childhood cancer with witchcraft or curses. Additionally, misconceptions are widespread that childhood cancer will always have a fatal outcome, or that it may be contagious or could be inherited by future offspring.
Stigmatisation of children and their caregivers has been a recurring theme during the treatment phase, signaled by doctors and nurses caring for children in paediatric oncology wards. Stigma can be related to changes in appearance, such as baldness, nail discoloration, and weight loss following chemotherapy, together with changes in daily life functioning. Physical activities or social involvement may be hindered by late effects such as pain, heart failure, and fatigue.
Stigma is also linked to supernatural beliefs associating childhood cancer with witchcraft or curses. Additionally, misconceptions are widespread that childhood cancer will always have a fatal outcome, or that it may be contagious or could be inherited by future offspring.
Physical activities or social involvement may be hindered by late effects of treatment such as pain, heart failure, and fatigue. Photo: Katerina Holmes
Alarmed by anecdotal evidence of survivor stigma, researchers and healthcare providers at MTRH started exploring how survivors and families experienced social reintegration into society.
Ruth, who had a lower limb amputation and was cured of an osteosarcoma, joined secondary school after finishing her last course of chemotherapy. “That was also another challenge because it was a new school, a lot of people did not know me, and I faced challenges when it came to walking,” she said. “So it became a problem explaining to people what was going on.”
Ruth was lucky that one of her fellow students volunteered to assist with attending dinner or making the beds. However, teachers criticised her friend who was queuing twice to bring Ruth lunch so she did not have to stand for long periods. “If the teacher did not know him, they would send him to the back of the line, which would now start another process of starting to explain that I was a student with a disability. Often the teachers would not understand the needs that I had at that time,” Ruth said.
Nzioka, a Grade 5 pupil in Nyahururu, hated his school after his amputation—the result of nephroblastoma—caused his friends to coin a new word to describe him: “Kiwete,” a Swahili term for cripple. His deformity seriously altered his body image. His parents were forced to transfer him to a different school. The fear of stigma, and subsequently of exclusion, may even persuade families to refuse treatment proposed by oncology experts.
Esther, a 15-year-old girl in Kisii, was quite athletic and the captain of the volleyball team in her school. She struggled to accept her amputation, the result of a bone tumour, since her status as team captain would change and it would affect how she looked and the way her friends perceived her. She preferred to have the cancerous foot than be without it.
Kelvin, a Hodgkin lymphoma survivor, encountered skepticism towards his ability to complete training with the Kenya Defense Forces. The training was rigorous and, he said, “most did not believe that I went through it without any special treatment”. However, he regained self-esteem by showing himself and other recruits that he was not inferior to them. “After I left the force and showed that I can fit anywhere, I used the stigma as strength to build myself. I did not see it as demoralisation. I used the stigma to build myself. It was the strength that helped me move from one step to the other,” Kelvin said.
“These are people you thought were going to be there for you. Sometimes, maybe it’s because they do not know what you are going through.”
Mwangi, who had cancer of the post-nasal space, felt very lonely in his cancer journey. “I lost a lot of my friends because they started spreading rumours that I was going to die or that I have HIV,” he said. “These are people you thought were going to be there for you. Sometimes, maybe it’s because they do not know what you are going through.”
Stigma can also be felt at the family level. Due to long periods of hospitalisation, marriages can face challenges like infidelity, conflict between spouses, and even separation or divorce.
Moses was left in the care of his maternal grandma when his mother remarried when he was six months old. He was diagnosed with neuroblastoma at the age of 13, and since his frail grandma was unable to care for him in the hospital, his mother, who had previously left, was requested to do so. At home, her husband asked her to choose between Moses and her other children. She decided to leave the hospital with great torment, and a few hours later Moses died, with great sadness, alone and without his family. Since his death, his mother’s marriage has been troubled with the fear of cancer and she is “contemplating to leave”.
Stigma is often fueled by ignorance, and therefore it is essential to educate communities about childhood cancer and the myths associated with it. Photo: RDNE Stock Project
To help survivors and their parents deal with stigma and social reintegration problems, we have come up with several interventions that will be implemented towards the end of 2024. We propose that survivors be checked for any symptoms of mental health issues associated with stigma during their clinic visits. They can then be appropriately referred to a mental health specialist who can assist them.
We think that peer contact plays a big role in helping both survivors and their families not only come to terms with the diagnosis but also deal with the stigma. We plan on having annual survivorship meetings where survivors and parents of survivors can meet and share their concerns.
Funds have been raised to set up a national organisation for parents and survivors. We anticipate that this will help affected parents and survivors come together to not only raise awareness about the challenges they face but also advocate for themselves.
Lastly but most importantly, we believe that education is the most important tool we can use to fight stigma. Stigma is often fueled by ignorance, and therefore it is essential to educate communities about childhood cancer and the myths associated with it.
Our intervention program focuses on education of healthcare workers and parents, but there have been efforts by the government and other stakeholders to educate wider society about childhood cancers. We believe that all of these strategies will work to reduce stigma among childhood cancer survivors and improve their social reintegration after treatment.
The opinions expressed are those of the authors and do not necessarily reflect the position of Re:solve Global Health.
Elizabeth Kabuthi is a senior medical social worker and certified child life specialist at Moi Teaching and Referral Hospital and a program coordinator at Sally Test Child Life Program. The Child Life program works with hospitalised children and their families using play-based interventions to support positive coping and a holistic, family-centred care approach.
Festus Njuguna is a senior lecturer in the Department of Child Health and Paediatrics at Moi University. He also works as a paediatric haemato-oncologist and heads the haemato-oncology department at Moi Teaching and Referral Hospital. He is passionate about improving care for children with haemato-oncology disorders in low- and middle-income settings.
Gertjan Kaspers is a paediatric oncologist and director of the fellowship programme at the Department of Academy and Outreach in the Princess Máxima Center. As a professor of paediatric oncology at Amsterdam UMC, he has trained 41 PhD students and co-authored more than 600 publications. He is chief investigator of the international protocol CHIP-AML 2022.
Jesse Lemmen is a medical doctor and PhD student in paediatric oncology at Vrije Universiteit in the Netherlands. His research focuses on childhood cancer survivorship in Kenya and is part of a collaboration between the Princess Máxima Center in the Netherlands and the Moi Teaching and Referral Hospital in Kenya.
Susan Mageto is a clinical pharmacist, lecturer at Kisii University in Kenya, and PhD student in paediatric oncology at Vrije Universiteit in the Netherlands. Her PhD is on paediatric oncology survivorship in western Kenya. Her research projects are part of a collaboration between the Princess Máxima Center in the Netherlands and the Moi Teaching and Referral Hospital in Kenya.
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