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In developed countries, there are now many support services:
Ronald McDonald Houses accommodate families in a home-like environment close to the child’s hospital.
Child life specialists use play to help affected children and their siblings cope with therapy.
Parent/survivor groups enable families to meet (online or in person) to share information and support.
Laws in many developed countries enable a period of compassionate leave for parents to care for their sick children.
Wish-granting organisations, camps and holiday opportunities help children rediscover their childhood, and enable healing and memory making for the whole family.
When curative therapy is no longer possible, hospice care enables children to die with dignity in tranquil, specially created environments. Children who return home to die are supported by community outreach and hospital linked palliative care staff.
Lack of access to clear information, and limited consultation time with overstretched staff means parents are frequently unable to make fully informed decisions about their child’s medical care.
Families struggle to find money to pay for transport to hospital on overcrowded buses. A round-trip may cost as little at £2.50 (US$5). Children may miss treatments or follow-up when there is not enough money for this transport.
To increase the likelihood of completing therapy, children from impoverished families are routinely hospitalised throughout the initial treatment phase, particularly when the home is many miles away. These medically unnecessary hospital admissions cost the family much money, and block beds needed for ailing children.
Cancer treatment is not free of charge in many developing countries like Kenya. 58% of Kenya’s population lives on less than US$2 per day, and most families cannot afford to pay the big bills. National Medical Insurance is available to Kenyan citizens, and families are encouraged to enrol their child upon diagnosis. However, this plan covers only inpatient treatment, so care that could be outpatient, instead becomes inpatient. Most families cannot afford to pay the insurance premiums.
Many parents cannot remain with their hospitalised child. They may have other children at home to care for, crops to plant in order to put food on the table, or jobs to keep so that medical bills can be paid.
When parents do stay in town, they frequently sleep rough because there is no family accommodation at or close to most hospitals.
Children languish on the wards with no toys or entertainment, and no access to education.
Siblings are often pulled out of school to save money for medical bills. Though primary education may be free, cost of books, uniform and other resources add up.
Most families of dying children have no access to palliative care – including pain management, or to specialist emotional or practical support.
In many cases, children who have completed inpatient therapy, or died, are not released from hospital until their medical bill has been paid. Fearing repercussions of their unpaid debt, some families abandon their child in hospital. Yet these are families who clearly love their child - most will have overcome significant obstacles to reach medical care in the first place.
Many of these challenges contribute to abandonment or refusal of therapy, leading to extreme suffering and death that could have been prevented.
Information
We are developing a range of print and audio-visual resources to supplement the information given by doctors. These will provide detailed information about various aspects of retinoblastoma care, enabling parents to make informed decisions when consultation time with doctors is limited.
We will also develop a support network through which families can connect, share experiences and support one another.
Transport and accommodation
As we develop a national strategy of co-ordinated care, travel distances faced by many families will be reduced. We also aim to develop a locally funded travel sponsorship scheme for impoverished families who continue to face long travel distances and prohibitively high costs.
We aim to encourage construction and locally funded maintenance of a family hospitality house in Nairobi, to serve families whose children require intensive post-operative therapy.
A Family House will help:
accommodate the child and family outside hospital, thus keeping the family together, minimising costs and freeing up hospital beds for ailing patients;
reduce the risk of, or prevent abandonment of both treatment and child;
account for the child's whereabouts and ensure regular attendance at all hospital appointments;
monitor nutrition and hygiene in children whose immunity is compromised by therapy, and protect the child from infection;
encourage emotional and practical support among resident families;
Provide further services currently unavailable in the hospital due to lack of manpower and space, such as play and education.
Until construction of such a home, we aim to develop a patient fostering program. This would provide loving temporary homes during treatment for children from far away. Such children are frequently admitted to hospital throughout treatment and are at high risk for abandonment.
Cost of medical care
As the Kenyan National Retinoblastoma Strategy evolves, treatment costs will be significantly reduced for many families:
Accurate and timely pathological review of removed eyes will identify children who do not need chemotherapy treatment after surgery.
Child life support will also reduce some costs associated with treatment and follow-up care.
Accommodation support will reduce the need to hospitalise children between therapies, thus reducing the medical bill.
As a result, we would expect to see a reduction in the number of abandoned children, and an increase in completion of treatment.
Palliative support.
When curative treatment is no longer possible, we aim to provide at least minimal palliative support for the family. This will include access to training in child life pain management approaches when drugs are not available, and emotional support for families through a national family network.
A comprehensive family support system may take many years to develop, but this is a crucial element in strengthening retinoblastoma care. Through these programs, care for the child and entire family can be dramatically improved, and the burdens they currently face can be eliminated or significantly reduced.
National Registry Awareness Raising Co-ordinated Care
Child Life Support Family Support Artificial Eye Service
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