Lack of clear retinoblastoma information, and limited consultation time with doctors means parents are frequently unable to make fully informed decisions about their child’s medical care. Essential care is often delayed while parents search for reliable information from different doctors of other countries.
Lack of public access to information about cancer, and especially cancer in children, has fuelled many harmful misconceptions. Stigma surrounding loss of an eye often prevents families from accepting life-saving surgery, and ignorance leaves communities powerless to help families in distress.
Regular parent meetings at Kenyatta National Hospital (Nairobi) and Moi Teaching and Referral Hospital (Eldoret) are supported by both ophthalmologists and oncologists who care for children with retinoblastoma. Doctors and parents are able to talk at length, ask questions and exchange information that helps both parents and the medical team.
A national network of parents is also growing, through which families can connect, share experiences and support one another. This is helping to increase understanding about the value of prompt treatment for newly diagnosed children, especially when families resist recommended surgery.
Members of our team in Nairobi and Eldoret make home visits and talk with Individual families by telephone to help them better understand retinoblastoma and its treatment. Many families contact us directly for support.
We also make home visits when a child fails to attend planned treatment, and telephone contact with the family is difficult. In this way, we have been able to help families accept and access treatment they would otherwise have refused or abandoned due to cost or fear of the treatment itself.
We are developing a range of print and audio-visual resources to supplement the information given by medical professionals. These will provide detailed information about various aspects of retinoblastoma care, helping parents to understand more and explain their child’s journey to relatives and friends.
Impact of Information and Emotional Support
Support groups and networks strengthen communication between parents and the medical team. Questions or challenges are raised and discussed before they negatively affect the child’s care.
Parents are becoming more informed, confident advocates for their children and their peers. They more readily report concerns about the welfare of their family or another child so issues can be addressed before the child abandons care.
With clear information, families are more able to consent to and comply with recommended treatment, and carry less fear about what lies ahead.
Cancer treatment is not free in many developing countries, where most people earn less than $2 a day. Families struggle to find money even for the basics like daily living costs and transport to hospital.
Many parents must leave their child alone in hospital while they work to pay the bills. Siblings are often removed from school to save money – even when primary education is free, uniform, books, stationary and other supplies have to be bought by the family.
Treatments and follow-up are regularly missed, and families often abandon therapy, even when the child’s life could be saved. Children suffer appalling pain and emotional distress before they die, and the experience is deeply traumatic for their parents, siblings and extended family.
Children are often not released from hospital until their medical bill has been paid, even if they have died. Fearing repercussions of their unpaid debt, some families abandon their child. Yet these families clearly love their child – most will have overcome significant obstacles to reach medical care.
Kenya’s National Hospital Insurance Fund covers the costs of inpatient care, but most families cannot afford the monthly premiums. We have developed a program that enables parents to sign up to the NHIF when their child is diagnosed, and generate income at their child’s bedside to pay the monthly premiums and help with daily costs during treatment.
Parents and guardians use existing talents and learn new skills such as beadwork, mat making and needlework to make handcrafts. The products are made to order and sold at gift shops across Kenya.
As NHIF does not mature for three months after registration, we established a patient fund, nourished by local businesses, community groups and individual well-wishers to ensure treatment is not delayed due to a family’s inability to pay.
Impact of Funding Support
Our approach to funding care has reduced average hospital stays from more than six months to less than five days. Pressure on hospital services is reduced and limited resources are being used more efficiently as fewer children delay, miss or abandon prescribed treatment.
Parents are less stressed by financial concerns and have more emotional energy to invest in staying well and helping their child cope with treatment.
While this is a huge achievement and wonderful for the children, the program’s success also means parents are now not on the ward long enough to make handcrafting products. So we are in the process of restructuring this program to build on its success and ensure it continues to sustain families.
Cancer treatment is a stressful and potentially traumatic experience that can overwhelm a child’s natural ability to cope and cooperate with their doctors. This can delay healing and normal development, with lasting negative effects on their physical and mental health.
Treatment requires both killing the cancer or minimizing symptoms, and caring for the child’s complete well-being, to ensure they have the best possible quality of life. However, limited resources and lack of expertise in child-friendly approaches to care create a hostile environment for stressed young children.
When children cannot cooperate with their treatment, procedures take longer, often requiring more personnel and sedation. Distressed children are less able to cope with pain, requiring stronger medications. This costs more money with a negative impact on the child’s well-being.
Child life promotes effective coping through play, preparation, education and self-expression activities based on natural child development. Even the tiniest babies can benefit from techniques like infant massage and comfort positioning.
While Certified Child Life Specialists are university trained professionals, child life approaches can be used by doctors, nurses, social workers, teachers, parents and others to support children.
We are training child life leaders from across Kenya. Child life leaders are nurses, doctors and support staff who promote child life in their region. Phlebotomists (people who take blood) and social workers also attend training.
Training at the Sally Test Paediatric Center in Eldoret is led by our Certified Child Life Specialist, Morgan Livingstone. Morgan has extensive experience of resource-limited child life provision through her work with Operation Smile.
The program of in class learning and hands on practice includes training in:
- medical play and simple language to prepare children for procedures;
- using cloth dolls to explain medical procedures in a non-threatening way, and aid self-expression for a non-verbal or distressed child;
- role play and recreational activities to ease fear and anxiety;
- distraction play and comfort positioning to reduce anxiety and increase co-operation during procedures;
- massage and guided imagery to control pain and help the child relax;
- palliative care, including grief and bereavement support for the family;
- communicating with the family;
- cost saving through child life practices;
We are developing a formal training syllabus in collaboration with medical staff, child life leaders, parents and the Ministry of Health. We are also creating a range of educational resources to help children, families and the wider community better understand retinoblastoma, its treatment and effects.
We funded a four-day infant massage certification course in September 2010, led by the International Association of Infant Massage (IAIM). 17 child life leaders were certified as Infant Massage Instructors, creating a new option for managing the pain and distress of infants and young children.
In 2015/16, two of our child life leaders completed training and full certification with the Child Life Council. They became he first Certified Child Life Specialists to complete 100% of their training and examination process in Africa. This is a huge step forward in bringing affordable, high quality and culturally appropriate child life provision to Africa’s children.
Impact of Child Life
Child life is not an optional extra for children in developing countries. Our child life program helps children cope with and be actively involved in their care.
Treatment costs are also reduced, for example, by eliminating the need to anesthetize children during procedures like lumbar puncture and radiotherapy; Improving the child’s treatment experience and well-being helps them move forward through life as a happy, confident individual.
Cancer treatment often lasts for months or years, and most children must travel long distances to receive specialist care. The majority of people in Africa earn less than US$2 per day, and costs of accommodation or regular travel rapidly suffocate many families.
Children frequently miss scheduled treatment and follow-up exams, increasing risk of treatment failure, relapse, late diagnosis of new cancer activity and death.
Many children are admitted to hospital for the duration of therapy, because there is nowhere else for them to stay. This increases costs, blocks beds needed by other children, and rips families apart when they need each other most.
Children in hospital have few toys or entertainments to raise their spirits, and no access to education.
Parents of very young children may usually remain with their child for a small fee. Parents of older children are often not accommodated on the ward unless the child has additional special needs.
When they cannot afford somewhere safe to stay close to the hospital, many parents sleep rough to remain near their child. Others return home, leaving their sick child alone in the city. This is deeply distressing for the whole family and rapidly destroys hope.
Abandonment of therapy is the primary cause of death among curable children in developing countries. Major risk factors are travel time to the hospital of more than two hours, lack of accommodation near the hospital, lack of emotional support, and patients aged under 4 years.
We are in the early stages of developing plans for a family house in Nairobi. The facility will provide a safe, homelike environment and support for families seeking childhood cancer care in Nairobi.
Our vision for the house includes space for recreation and education. The house will also accommodate a community focused resource centre, to help increase awareness and understanding of childhood cancer in Kenya.
We are incorporating income generating opportunities into design of the house, for ling-term self-sustainability. These will also help resident families earn extra money and learn new skills to lift them out of poverty.
A Family House is a huge project. Birthing it will take many years, but the process has begun. One day soon, families who come to Nairobi for their child’s cancer care will have a happy, encouraging place to stay, designed and built to meet their unique needs.
Impact of a Family House
Family houses worldwide are less costly than medically unnecessary hospital stays or frequent travel between home and hospital. They improve quality of life for patients, parents and siblings, promote unity in the family and enable both parents to be fully involved in their child’s treatment.
These houses also reduce inequalities in health care access, particularly in developing countries, where a family house can literally save a child’s life.
Impact of Improved Family Support
A comprehensive family support system may take many years to develop, but this is a crucial element in strengthening the care of children with retinoblastoma and other cancers. Through these programs, care for the child and entire family is being enhanced, and burdens are being significantly reduced.