The cover of the book is set in the forest where a carpet of dry leaves line the ground with speckles of yellow and brown. A child walks in the forest holding a Winnie the Pooh teddy bear whose face is downwards. The cover of the book aptly depicts the the journey that is childhood cancer in Kenya.
Dr Festus Muigai Njuguna, the author, is a Lecturer at Moi University and a pediatrician at the Moi teaching and Referral hospital in Eldoret. He wrote the book as a partial fulfillment of his PhD studies in Vrije Universiteit Amsterdam where he explored the face of childhood cancer treatment and management in Kenya.
Dr Festus Muigai Njuguna, the author, is a Lecturer at Moi University and a pediatrician at the Moi teaching and referral hospitaL.
He observes that childhood cancer is rare and comprises 1% of all cancers. He admits that early diagnosis is a challenge in most sub-Saharan countries due to poor knowledge on the signs and symptoms of cancer. These signs include;
- Frequent infections
- Bruising and bleeding
- Bone or joint pain
- Lack of appetite
- Stomachache, and weight loss
- Coughing or breathing difficulties
Other reasons that contribute to fewer children in developing countries being diagnosed with cancer early enough include;
- Low parental education and awareness on health issues
- Reliance on alternative medicine
- Financial difficulties
- Lack of proper diagnostic equipment in the health facilities
- Poor referral system
The myths and disbeliefs
One of the key concerns raised by Dr Njuguna in his book is the proliferation of myths that childhood cancer is caused by ‘a bad eye’. “Many parents reported that community members believed that their child was bewitched and consequently advised them to seek traditional healers. In fact, half of all parents were strongly advised by community members to stop treatment,” Dr Njuguna observed in one of the chapters in the book.
Dr Njuguna calls for the need of urgent and sustained public health education on childhood cancer. “Booklets about childhood cancer for parents of newly diagnosed children would help them to educate others and reduce the ignorance and social isolation,” he notes.
Stigma was also one of the major factors that some families decided not to share the diagnosis and treatment plan their child was receiving. “Some families decided not to disclose their child’s condition to various community members out of fear of being stigmatized, isolated, or excommunicated.,”
In the book, he aptly describes three forms of treating and managing childhood cancers;
He further cited the importance of a multi-disciplinary team that includes paediatric oncologists or pediatricians, radio-oncologists, surgeons, nurses, pharmacists, social workers, nutritionists, child life specialists amongst other team members to ensure a holistic team takes care of the child.
Did you know that the survival of childhood cancer is around 80% in high-income countries compared to less than 35% in the low and middle-income countries, especially those in Africa? Dr Njuguna observes that the disparity can be due to lack of infrastructure for diagnosis, treatment and management, poor knowledge on childhood cancer lead to patients presenting with late stage disease and treatment abandonment.
Treatment abandonment is defined as the failure to initiate or sustain treatment during four or more successive weeks. As discussed by Dr Njuguna, patients and their families fail to continue with treatment due to the following factors;
- Lack of information
- Hospital retention
As Dr Njuguna explores the lack of information, Dr Njuguna found out that doctors treating children with cancer provide insufficient information and guidance to poor families. This set off a potentially risky situation where the parents compared notes with other parents whose children were undergoing cancer treatment.
And as in medicine, treatment is individual and discussions should be initiated and sustained with the specific doctor treating the patient on a case by case analysis. “If parents rely on each other for information, these discussions may affect not only their understanding of the disease but also their level of adherence to their child’s treatment,” Dr Njuguna noted in one of his papers published in the book.
A trend that also discourages children and their families from seeking treatment is retention of the patients in the hospitals over unpaid bills. “If doctors discharge a patient from the hospital and their family cannot pay the medical bill, the parents are not allowed to take their child home. The child is retained in the hospital until the parents can cover the medical bill or until their medical bill is waived,” Dr Njuguna observed adding that this practice may discourage parents from seeking treatment next time for feat that their child will be held back at the hospital.
In cases where the child died during treatment, parents expressed disappointment in being denied to take the body home for burial. “Several parents described the hospital retention policy as particularly painful because it deprived parents of the opportunity to give their children a dignified funeral and burial in the soil where relatives and ancestors were buried,” Dr Njuguna writes adding that in cases where there was an agreement to release the child’s body to the relatives, their national identity cards were retained by hospital as a collateral that the family would return to clear the bill.
Hospital retention policies may scare and prevent poor families from coming to public hospitals, Dr Njuguna observed.
So what is the way forward?
This is a good time to grab this book!!!