Assessing and Addressing the Need for Cancer Patient Education in a Resource-Limited Setting in Haiti

Abstract

Purpose. Misinformation and lack of information about cancer and its treatment pose significant challenges to delivering cancer care in resource-limited settings and may undermine patient engagement in care. We aimed to investigate patients' knowledge and attitudes toward cancer and its treatment and to adapt, implement, and evaluate a low-literacy cancer patient education booklet at the Hôpital Universitaire de Mirebalais (HUM) in rural Haiti. Materials and Methods. A low-literacy cancer patient education booklet was adapted into Haitian Creole in collaboration with clinicians at HUM. Patients were recruited for structured interviews (n = 20) and two focus groups (n = 13) designed to explore patients' attitudes toward cancer and its treatment and to assess whether the booklet increased patients' knowledge via an investigatordesigned knowledge test. Results. Participants reported a subjective lack of knowledge about cancer and its treatments and described views of cancer as deadly or incurable. Patients of varying education levels valued receiving written materials that set expectations about cancer treatment and expressed a desire to share the booklet with caregivers and others in their community. Participants across all levels of education significantly increased their performance on a knowledge test after counseling using the booklet (p < .001). Conclusion. We found that an educational booklet about cancer developed in collaboration with local providers was well received by patients with variable literacy levels and improved their knowledge of cancer and its treatment in a resourcelimited setting. Such educational materials have the potential to serve as tools to engage patients with cancer and their families in care.

Implementing Patient-Directed Cancer Education Materials Across Nigeria

“…The acceptability of the booklet in this study was similar to the implementation experience in Rwanda and the prior pilot in Haiti. 4 , 5 Comparing the Haitian and Nigerian studies highlights a key difference in education level: 88% of the Nigerian sample (with a known education level) had a secondary education level or higher in comparison to only 40% (8 of 20) in the Haiti study. The pretest score average was about 50% in Haiti.…”

“… 1 - 3 The GO booklet has been used in multiple countries, has been translated to more than 20 languages, and more recently was studied formally in a small pilot in Haiti. 4 , 5 …”