Cancer care providers at Queen Elizabeth Central Hospital in Malawi identified a need for educational materials for their low-literacy patients. Global Oncology, a nonprofit focused on improving cancer care, research, and education in resource-limited settings, partnered with THE MEME to develop cancer patient educational materials (PEMs). The goal of the project was to create clinically relevant and culturally appropriate low-literacy PEMs to improve clinical care, support services, and patient adherence in resourcelimited settings. The team also aimed to develop a product strategy and business model for long-term sustainability. The article introduces the challenge from a global health perspective and the ways design can have a significant impact. It presents the collaborative process of developing the "Cancer and You" booklet for multiple cultural contexts and focuses on the results of a pilot study in Haiti evaluating the efficacy of the design in simplifying complex medical information, facilitating patient education, and improving communication.
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.
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
Background: In Haiti, cancer is associated with myths that have traumatic effects on patients and families. Cancer diagnoses are drivers of socioeconomic change, with psychological repercussions for an impoverished population. Aware of this reality, the Oncology Service at University Hospital of Mirebalais (HUM) created a dedicated psychosocial team, composed of a social worker, her assistant and a psychologist. Care is provided to patients and families through: individual counseling, support groups, outreach activities, home visits, and mental health consults. This abstract focuses on patient support groups (SG). SGs act as vectors of information and training that are capable of breaking myths, and accompanying patients on their cancer journey. Aim: The primary aim of SGs is to create a space for patients to participate in education and peer counseling. During sessions, the team encourages expressions of emotions and experiences in relation to the disease and its repercussions on patients and caregivers. These discussions encourage participant solidarity and strengthen compliance to treatments. SGs, however, are not static and services are continuously improved by collecting feedback. Methods: To address the psychosocial needs of each cancer patient, SGs were developed with specificity. Patients are categorized in SGs according to the medical treatment they are receiving. Other SGs offered, focus on caregiver experience. SGs have about 12 participants, last 120 minutes and are held in a private space in HUM. In general, discussions relate to patient experience, side effects, relationship implications, and socio-economic impacts. Across all SGs, principles for speaking are negotiated and are always at discretion of participants. Results: The HUM team has provided SG services since 2013. SGs are held often and the majority of oncology patients participate. In 2017, we held 30 SGs with over 380 participants. Therapeutic alliances have improved relationships: patient–patient, family–patient, and patient-clinician - fostering interdisciplinary collaboration. However, all SGs must be performed the same day as the medical appointment due to socio-economic difficulties that can create logistical challenges. Patient needs are also fluid and flexibility is key as SGs evolve. Conclusion: SGs play a critical role in comprehensive cancer care, particularly in Haiti where there are severe social implications for patients. Mental health of cancer patients is critical and SGs are an impactful way to address this need. Arranging SGs by medical treatment, the model used at HUM, is adaptable to other low-income settings. Every SG is different and facilitators approach each session without preconceptions, yet diligent to gather feedback. SGs provide critical information to clinicians about social determinants and implications of cancer diagnoses in Haiti. In the future, we hope to do robust qualitative analysis of SGs, using feedback from cancer patients at HUM.
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