Schleimer Lauren E, Desameau Peter-Gens, Damuse Ruth, Olsen Maia, Manzo Veronica, Cardenas Carlos, Mehrtash Hedieh, Krakauer Eric L, Masamba Leo, Wang Catharine, Bhatt Ami S, Shulman Lawrence N, Huang Franklin W
Columbia University Medical Center, New York, New York, USA.
Harvard Medical School, Boston, Massachusetts, USA.
Oncologist. 2020 Dec;25(12):1039-1046. doi: 10.1634/theoncologist.2019-0258. Epub 2020 Jun 8.
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.
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 investigator-designed knowledge test.
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).
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 resource-limited setting. Such educational materials have the potential to serve as tools to engage patients with cancer and their families in care.
Misinformation and lack of information pose significant challenges to delivering cancer care in resource-limited settings; however, there are often no culturally and literacy appropriate tools available to aid in patient education. This article shows that written educational materials are well received by patients of variable literacy levels and can be effective tools for increasing patients' knowledge of cancer and its treatment in a limited-resource setting. Furthermore, the authors have made their educational booklet, Cancer and You, freely available online and welcome the opportunity to connect with readers of The Oncologist interested in implementing this educational booklet in clinical care.
在资源有限的环境中，关于癌症及其治疗的错误信息和信息匮乏对提供癌症护理构成了重大挑战，并可能削弱患者对护理的参与度。我们旨在调查患者对癌症及其治疗的知识和态度，并在海地农村的米雷巴莱大学医院（HUM）改编、实施和评估一本低识字率癌症患者教育手册。
与HUM的临床医生合作，将一本低识字率癌症患者教育手册改编为海地克里奥尔语。招募患者进行结构化访谈（n = 20）和两个焦点小组（n = 13），旨在探讨患者对癌症及其治疗的态度，并通过研究者设计的知识测试评估该手册是否增加了患者的知识。
参与者表示主观上对癌症及其治疗缺乏了解，并将癌症视为致命或无法治愈的疾病。不同教育水平的患者重视收到有关癌症治疗的书面材料，并表示希望与护理人员和社区中的其他人分享该手册。在使用该手册进行咨询后，所有教育水平的参与者在知识测试中的表现都有显著提高（p < .001）。
我们发现，与当地提供者合作编写的关于癌症的教育手册受到了识字水平不同的患者的欢迎，并在资源有限的环境中提高了他们对癌症及其治疗的知识。此类教育材料有可能成为促使癌症患者及其家人参与护理的工具。
错误信息和信息匮乏在资源有限的环境中对提供癌症护理构成了重大挑战；然而，通常没有适合文化和识字水平的工具来帮助进行患者教育。本文表明，书面教育材料受到识字水平不同的患者的欢迎，并且可以成为在资源有限的环境中增加患者对癌症及其治疗知识的有效工具。此外，作者已将他们的教育手册《癌症与你》免费发布在网上，并欢迎有机会与有兴趣在临床护理中实施这本教育手册的《肿瘤学家》读者建立联系。
