Developing and Evaluating Culturally and Literacy Appropriate Cancer Patient Education Materials for Haiti
Authors: Schleimer Lauren E. , Desameau Peter-Gens , Damuse Ruth , Olsen Maia , Manzo Veronica , Guay Rachael , Bhatt Ami S. , Cardenas Carlos , Huang Franklin W. , Shulman Lawrence N. 
Published: July 2016

Abstract 21

Background:

New efforts are being made to bring modern cancer medicine to patients in low- resource settings, where limited public awareness of cancer and health literacy pose significant challenges. Partners In Health (PIH) launched its first cancer program in Haiti in collaboration with Dana-Farber Cancer Institute and Brigham and Women's Hospital; however, no patient education materials appropriate for Haiti existed. Global Oncology has developed written educational materials based on cancer patient needs in low-resource settings. Objectives are to: 1) Adapt Global Oncology's patient education materials to be culturally and literacy appropriate for Haiti; 2) Assess the effectiveness of written materials for cancer patient education in a low-resource setting.

Methods:

Feedback from staff at the PIH-affiliated Hôpital Universitaire de Mirebalais (HUM) was incorporated into the pilot materials. We recruited 33 chemotherapy patients at HUM for interviews (n=20) and two focus groups (n=13). Patients were presented the booklet by the Oncology social worker, and pre- and post-counseling tests were administered. Qualitative data regarding booklet design and content was collected through observation of counseling sessions, interview questions and focus group discussions. Providers were surveyed with a questionnaire and proposed modifications to the booklet were discussed during a provider focus group.

Results:

Patients across all levels of education significantly increased their knowledge from pre-test (m=49.2%, sd= 19.5%) to post-test (m=87.9% sd = 8.9%; t(19)=10.07, p<0.0001). Patients felt reassured by the booklet. Many wanted to share the booklet with family and friends to teach them about cancer. Patients valued hearing about the side effects of chemotherapy and the precautions to take during treatment, but they also wanted more information about the causes of cancer and whether a cure is possible. Providers expressed a desire for the materials to include a definition of palliative versus curative treatment and to improve the explanation of cancer as a disease.

Conclusion:

Written patient education materials designed for low-resource settings enhance discussions between patients and providers, and can be a tool for disseminating information beyond the hospital to the family, friends and caregivers of cancer patients. Incorporating patient and provider feedback is essential to ensure written materials are culturally and literacy appropriate for the local patient population.

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST:

Lauren E. Schleimer No relationship to disclose Peter-Gens Desameau No relationship to disclose Ruth Damuse No relationship to disclose Maia Olsen No relationship to disclose Veronica Manzo No relationship to disclose Rachael Guay No relationship to disclose Ami S. Bhatt No relationship to disclose Carlos Cardenas No relationship to disclose Franklin W. Huang Stock or Other Ownership: GlaxoSmithKline, Abbvie Lawrence N. Shulman No relationship to disclose