The rapid growth of the Latino population within the U.S. has been well documented, but there is scant knowledge of user requirements related to healthcare information. Research conducted by the Pew Hispanic Center in 2007 found that among Latinos who are predominantly English-speakers, 87 percent go online, compared with 76 percent of bilingual Latinos, and 32 percent of those who are predominately Spanish-speakers. The conclusion has been that non-English-speaking Latinos do not access the Internet because of language difficulties.
Research conducted by AOL in 2006 found that the more acculturated Latinos are also more likely to speak English and use the Internet. National Cancer Institute (NCI) research findings from 2006 indicated that less acculturated Latinos with no online access are looking for online tools to help them bridge the cultural divide and navigate the U.S. healthcare system.
To better understand the online health information needs of underserved audiences, such as Latinos and the healthcare professionals who serve them, NCI conducted user research in 2009 on the cancer information website Cancer.gov en español (www.cancer.gov/espanol). We conducted usability testing to determine if there were any differences between mainstream U.S. audiences and Latinos.
Using a broad-based approach, we recruited healthcare professionals of diverse Latino ancestries in Los Angeles with different levels of acculturation and Spanish language proficiency. We hired a recruitment firm with onsite bilingual-bicultural staff and extensive experience recruiting Latinos. Recruitment materials were developed in Spanish and English and disseminated to community contacts. Screening was also conducted in both Spanish and English depending on the preference of the potential participant (see Table 1).
|Acculturation||Time lived in the U.S.||Spoken language||Reading language||Radio and television|
|Low acculturation||Lived in the U.S. 2-10 years||Always spoke Spanish or
Spoke more Spanish than English
|Spanish only||Spanish only|
|High acculturation||Lived in the U.S. more than years
Born in the U.S.
|Spoke more Spanish than English
Spoke the same amount of Spanish and English
|Spanish and English||Spanish and English|
To gain trust with potential participants, we offered transportation vouchers and onsite childcare. We reached out to local health networks, community health centers, clinics, hospitals, and cancer centers. To create a bilingual-bicultural environment, participants were told each session would be conducted in Spanish, English, or a combination of both languages, based on their own language preference.
Recruited participants represented different acculturation and language preferences. Each participant had experience looking for online cancer information on their own or with someone else, or carried a Latino patient caseload of at least 20 percent. Los Angeles was selected because of long established Latino communities representing various language preferences and acculturation levels. The diversity of health services available in the area allowed us to recruit different types of healthcare professionals, including certified medical professionals, lay health educators, and medical office staff.
Another User Group
While searching for participants, we found a new user group called promotoras de salud (promoters of health) that had not previously been visible to us. This group is somewhat similar to community health workers, who access online information and technology for use in health education programs targeting less acculturated Latinos, and implement programs using the train-the-trainer method.
Members of this community–—predominantly women with different acculturation levels and language proficiency—are trained to conduct bilingual health education and outreach in their own communities. Some are volunteers, while others are employed part-time.
They work in a variety of settings, including schools, churches, community clinics, homes, parks, community centers, and local health fairs.
Before conducting research for the Cancer.gov en español site, we did not have an understanding of how promotoras were using online health information to help their communities navigate the U.S. healthcare system. We did not know the important role they play in the dissemination of online health information, and how they share their knowledge with offline Latino audiences.
As opposed to mainstream U.S. audiences who are interested in health content that is direct and geared toward the perspective of the individual, we found that our target users require something more than just translated content. Instead, they require content that has been adapted or “transcreated” to meet their cultural and linguistic needs.
While we obtained results for everyone in the recruitment matrix, some of the most interesting data came from the promotoras. The following findings and design principles demonstrate the needs of the population we studied:
Respeto (respect) – Appropriate deferential behavior towards others based on age, sex, social position, economic status, and authority. Content written from the perspective of a doctor and images of doctors lent credibility to health information.
Familismo (family) – The prominence of interdependent networks within immediate and extended family members. Reflecting the importance of family, content should be geared toward the family and include images of families.
Confianza (trust) –Establishing a welcoming relationship. Content should include contact information for Spanish-speaking support personnel. The toll-free NCI Spanish phone support center was preferred.
Personalismo (personal connections, not institutional relationships) – Descriptions of health organizations and institutions should have a community feel; NCI as “our institute” instead of “the institute.”
- Addressing myths and health beliefs provides an opportunity to address fatalismo (fatalism). The belief is that cancer diagnosis leads to certain death. Homepage banner messages of hope and survivorship such as Siga adelande: la vida después del tratamiento del cáncer (Facing forward: life after cancer treatment) successfully challenged the perception of cancer as a death sentence.
- Frequently asked questions on myths and beliefs are culturally appropriate ways to address stigmas related to disease. Participants first used content to answer their own questions about disease and then repurposed it for their trainees. A “Print this document” or “View/print PDF” button would help promotoras access and share.
Audio and Video Preferences
- Audio functions can be used for self-education and to increase comprehension among Spanish speakers who have low literacy.
- Including an audio download button allows the sharing of content with offline audiences.
- Language pronunciation guides should be in audio format, rather than written, to avoid difficulties with phonetic pronunciation.
- Audio content containing the voices of patients interacting with authoritative healthcare professionals gains trust (confianza).
Basic Understanding of Disease
- Divide information into first-page basics about disease and second-level pages for more detailed medical information. Promotoras prefer starting with “What is cancer?” and then graduating to more technical content.
- Promotoras are experienced in determining the quality of Spanish translations and often compare the English and Spanish pages to decide on the quality of translation and its trustworthiness (confianza).They print and share satisfactory translations with offline Latinos; otherwise, they translate into Spanish.
- Direct access to information in both English and Spanish via language toggles is important. Toggles that switch between identical pages are important so users can look up information in one language and then see it in another.
- Language that’s simple to read and understand; shorter sentences and paragraphs
- Concern about finding information suitable for people with low literacy in Spanish or English
- Access to images and graphic content is important for repurposing. Promotoras want to use graphics for their train-the-trainer programs.
- Images help to identify and relate (confianza and personalismo) but do not serve as primary navigation.
- Consistent with strong oral traditions in the Latino community, images tell stories about content.
- Reflecting diverse Latino ancestries (Mexican, Central American, and Puerto Rican) is important for this group and creates a sense of confianza.
- The left menu on the page serves as a navigation and orientation tool.
Although language is an important issue when working with the Latino population, equal attention needs to be dedicated to how Latinos differ from the mainstream U.S. population. Instead of translating from English to Spanish, online health information needs to be “transcreated” or adapted based on design guidelines that encompass the cultural and linguistic needs of this group, and serve as the foundation during adaptation of content from English to Spanish.
Groups that were previously considered offline depend on information intermediaries to find online health information and navigate the U.S. healthcare system. Promotoras first access health information to educate themselves and then repurpose content for their education programs. Based on these different needs, both designs and content should be created with a dual purpose.
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