Materials to Support Cancer Patients, Caregivers, and Health Workers - Toolkit

“No longer a disease of the West, cancer is responsible for one in six deaths worldwide, with about 70 percent of cancer deaths occurring in low- and middle-income countries according to the World Health Organization. But in these countries, with so much focus on communicable diseases, cancer has gotten little attention, stoking fear and misinformation that can often delay diagnosis until it is too late.”

This toolkit features educational materials from Ethiopia, Kenya, and Uganda that are designed to help patients and caregivers cope with cancer. They were produced by the American Cancer Society (ACS) and the Johns Hopkins Center for Communication Programs (CCP) in partnership with the Ministries of Health and key cancer stakeholders in the three countries. The materials are geared at those who have already been diagnosed and their families, and they directly counter the misconceptions found in each country, e.g. that cancer is caused by witchcraft, that it is contagious, that a biopsy spreads the cancer, and that radiation therapy burns a hole in the body.

The materials - which include booklets and educational flip charts for health workers to use when talking to patients - were adapted from materials developed by the ACS.  In order to adapt them to the contexts in Ethiopia, Kenya, and Uganda, research teams held focus group discussions and in-depth interviews with health care providers, cancer patients, and caregivers in each country to determine general knowledge about cancer and treatment, and to understand why cancer diagnoses often comes so late. They found significant knowledge gaps, widespread misconceptions and stigma, and lack of community support for patients living with cancer and their families.  The materials, and the process used to develop them, are presented in this toolkit to guide similar efforts in other countries:

The toolkit offers the following:

• Guidance on how to use the research-based P Process  to develop cancer education materials;
• All the cancer education materials - a patient booklet, a caregiver booklet, and a flipchart - from Ethiopia, Kenya and Uganda for download in ready-to-print files; and
• Guidance on how to create ones own adaption of these materials through Adaptation Guides and a library of images

As a next step, the initiative is looking to develop similar materials on cancer prevention.