Global Design Strategy for Cancer Patient Education Materials: Haiti Pilot Case Study

Cárdenas, Carlos; Schleimer, Lauren E.; Olsen, Maia; Manzo, Veronica E.; Guay, Rachael; Kim, Taerim; Desameau, Peter-Gens; Damuse, Ruth; Shulman, Lawrence N.; Huang, Franklin W.; Bhatt, Ami S.

doi:10.1111/dmj.12030

Cited by 3 publications

(6 citation statements)

References 15 publications

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“…The steps of the design process to create Cancer and You have previously been described [3]. The booklet was professionally translated into Haitian Creole and presented to the HUM oncology team, including two doctors, three nurses, a psychologist, and a social worker, who provided input on both content and wording.…”

Section: Methodsmentioning

confidence: 99%

“…Our goal was to create an educational tool that could enhance patient‐provider conversations and promote adherence to treatment by helping patients understand cancer and its treatment. The tool we created is an eight‐page booklet with culturally relevant images titled Cancer and You , which is available for free online [3,4]. This project was the first attempt, to our knowledge, to create such materials collaboratively with providers caring for low‐literacy patients with cancer in resource‐limited settings.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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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.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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“…This is because poor understanding of therapies is often cited as a reason for treatment abandonment, and it has been postulated that improving patient understanding may yield improved compliance. 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 …”

Section: Introductionmentioning

confidence: 99%

Implementing Patient-Directed Cancer Education Materials Across Nigeria

Dickerson

Ibeka²,

Inoyo³

et al. 2021

JCO Global Oncology

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PURPOSE As access to cancer care expands in low-income countries, developing tools to educate patients is paramount. We took a picture booklet, which was initially developed by the nonprofit Global Oncology for Malawi and Rwanda, and adapted it for use in Nigeria. The primary goal was to assess acceptability and provide education. The secondary goals were (1) to describe the collaboration, (2) to assess knowledge gained from the intervention, (3) to assess patient understanding of their therapy intent, and (4) to explore patient's experiences via qualitative analysis. METHODS We piloted the original English booklet at a single site and requested feedback from patients and providers. The booklet was updated; translated into Hausa, Yoruba, Igbo, and Pidgin English; and used at three additional sites. For the three-site cohort, we collected basic demographics, pretest and post-test assessing content in the booklet, and performed a qualitative analysis. RESULTS The original booklet was widely acceptable and recommended by patients at site one (n = 31) and by providers (N = 26) representing all four sites. In the three-site cohort (n = 103), 94% of patients recommended the booklet. An immediate post-test focusing on when patients should present to care showed a statistically significant improvement in one of the seven questions. Fifty-one percent of the patients (n = 103) knew their treatment intent (curative v palliative). Qualitative analysis highlighted that the patient's thoughts on cancer are dominated by negative associations, although curability and modern therapy are also frequently cited. CONCLUSION We adapted an educational booklet to a novel context and had it delivered by local partners. The booklet was widely recommended to future patients. The booklet had an impact on patient's knowledge of cancer treatment, potentially allowing for decreased abandonment.

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“…In 2013, a nonprofit organization, Global Oncology, in collaboration with oncology experts, designed a picture-based and culturally appropriate cancer education booklet that follows guidelines and suggestions from the National Cancer Institute and low literacy education specialists. 8,9 Illustrations designed for the booklet were piloted by Global Oncology in multiple LMIC sites to ensure that materials were culturally appropriate. 8 The booklet, titled Cancer and You , was originally drafted in English and later translated into native languages.…”

Section: Introductionmentioning

confidence: 99%

“…8,9 Illustrations designed for the booklet were piloted by Global Oncology in multiple LMIC sites to ensure that materials were culturally appropriate. 8 The booklet, titled Cancer and You , was originally drafted in English and later translated into native languages. Implementation of the use of Cancer and You demonstrated a nearly 40% increase in knowledge about cancer and chemotherapy adverse effects in an academic teaching hospital setting in Haiti.…”

Section: Introductionmentioning

confidence: 99%

Standardization of Education of Patients With Cancer in a Low- and Middle-Income Country: A Quality Improvement Project Using the Cancer and You Booklet

Habimana

Mukeshimana

Ahishakiye

et al. 2019

JGO

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PURPOSE The Butaro Cancer Centre of Excellence is the first comprehensive referral cancer center in Rwanda and at its inception did not have a standardized patient education program. Partners in Health/Inshuti Mu Buzima and the Rwandan Ministry of Health conducted a quality improvement project to increase patient knowledge by implementing a standardized oncology education program using picture-based and culturally appropriate materials designed for patients with cancer in low- and middle-income countries. METHODS Four Rwandan nurses were trained to provide patient education using the Cancer and You education booklet created by Global Oncology. A pre- and post-test design was used to evaluate patients’ knowledge of cancer, treatment, and management of adverse effects. Nurses administered a posteducation questionnaire in Kinyarwanda to determine patients’ level of satisfaction with the education session and booklet. The four nurses were interviewed at the completion of the project for their feedback. A total of 40 oncology patients were included in the pilot project, of which 85% reported completing primary school or less. RESULTS On average, participants improved 19% (95% CI, 13.9% to 24.1%; standard deviation, 16%) from pre- to postevaluation, demonstrating a significant increase in knowledge ( P ≤ .001). Nearly all patients (97.5%) reported that they were either satisfied or very satisfied with the education program. Oncology nurses gave positive feedback, highlighting that it was helpful to have a standard tool for education with descriptive illustrations for those patients with low literacy. CONCLUSION Implementation of a standardized patient education program demonstrated a statistically significant increase in patient knowledge and a high level of satisfaction among patients and nurses. The project serves as an example for other low- and middle-income countries looking to standardize oncology patient education.

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Global Design Strategy for Cancer Patient Education Materials: Haiti Pilot Case Study

Cited by 3 publications

References 15 publications

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

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

Implementing Patient-Directed Cancer Education Materials Across Nigeria

Standardization of Education of Patients With Cancer in a Low- and Middle-Income Country: A Quality Improvement Project Using the Cancer and You Booklet

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