An important program that we are now focusing on and definitely something the doctors want to us to work on. Some work in these areas has been done as pilot projects in AIIMS, in the last few years. We now plan to develop the programs pan-Inida. It is important to develop them along with the hospital management and PCU, and as low-cost, programs, involving community participation wherever possible, to ensure sustainability. The project will focus on evaluating and monitoring for effectiveness.

Under treatment support program we will focus on six areas of support -

Accomodation

The home away from home (HAH) provides accommodation, close to the hospital, to families of cancer affected kids who come from outstation for treatment. The home away from home is a core competency of CanKids as a low-cost model with parent and community participation. The first HAH in Delhi, near AIIMS, has now been run successfully for 2 years.

Under this aspect of TSP, HAHs would be developed together with the PCU/Hospital Administration, and local NGOs/organizations

Nutrition

Children with cancer need not just the healthy balanced diet that is vital for growth and development, their diet needs to be further supplemented, as the treatment, its side effects, loss of appetite make healthy eating for the child a challenge for his parents and the doctors. Undernourishment and even malnourishment can seriously compromise the treatment and recovery of the child with cancer.

Under this aspect of TSP, Cankids plans to develop low-cost programs, again with community involvement, to provide nutrition supplements to all children, through the week, in the hospitals or HAH. Malnourishment which can critically compromise treatment, will be addressed with complete immediacy, irrespective of cost involved.

Health and hygiene

Children suffering from the cancer have low level of immunity as compared to others against infection. High standards of hygiene – personal and the environment are vital.

Under this aspect of TSP, Cankids has created documentation, a hygiene kit and a film explaining the use fo the kit and underscoring the importance of good health and hygiene to make the child’s treatment more efficacious.

Infection control

Infection control is of great significance for children suffering from cancer. Paediatric cancer patients have an increased risk of potentially life-threatening infectious complications due to their underlying illnesses and intensive anticancer treatment. Infections result from poor health and hygiene as well as from the ward, hospital and environment.

This aspect of TSP will focus on controlling infection in the environment of the ward and hospital, and educating parents of where infections can result from.

Hematological support

In most PCUs in India, there would be a blood bank. But families need to donate blood to get the units they need for the child. In many cases they are unable to do this, especially if they are from outstation. Moreover the parents themselves are undernourished, suffer from anemia or other pre-existing diseases that prevent them from donating blood. They are compelled to buy blood from touts in the hospital.

This aspect of the TSP will provide blood support to families in need. Cankids will work with hospital blood banks, conduct blood donation camps to provide blood units to the Bank, and in turn have MOUs with the Blood bank to make equivalent number of units available to the families who need the support.

Documentation

Proper information and knowledge, about their child’s cancer, treatment, side-effects, psychological and social impact of the disease, resources available for support, is vital for the family of the child with cancer. The challenges of making this available to an often illiterate family are huge. PCUS and the doctors find there is a lack of time and resources, to properly inform the family. There is also the pervading attitude that the uneducated family will have no use for the documentation. In fact, all knowledge empowers and helps the family cope better.

The Patient Support Manual is the first step forward in this direction. Cankids will work with Hospital administrations and PCUs to make the information available to the families.

During the treatment process families and patients have various documents like OPD cards, prescription, lab reports, patient history forms, ID cards to carry. In the process some of them get lost due to negligence, frequent travel from one place to another and lack of awareness about the importance of such documents. To prevent this and make the treatment process more effective Cankids will work to ensure the filing and proper documentation of such papers.