Hepatitis C Ethnocultural Education, Outreach and Social Marketing Program: Translation and review

CATIE
Ontario

Hepatitis C Ethnocultural Education, Outreach and Social Marketing Program: Translation and review

2015

Translation is often a huge hurdle for organizations looking to serve new populations in their community. It requires a lot of time, resources, facilitation and trial and error. It took CATIE over a year to find translators in Simplified Chinese, Punjabi, Urdu and Tagalog who were capable of producing accurate and accessible language to educate people in the four priority communities about hepatitis for CATIE’s Hepatitis C Ethnocultural Education, Outreach and Social Marketing Program. For a full description of this program, please see the case study.

Finding translators

CATIE started this process by connecting to established organizations that work with immigrant populations (such as Access Alliance Health and Multicultural Services and the Ontario Council of Agencies Serving Immigrants in Toronto) and organizations that have a reputation for providing good health information in various languages (such as the Sexuality Education Resource Centre [SERC]). CATIE asked these organizations about their translation and review processes and about the translators they used.

Before hiring translators, CATIE tested them using a document that contained hepatitis C information, medical terms, technical language and information about sex and substance use. This document was essentially a “long draft” containing most of the content CATIE was considering using for the website and print resources. Medical and community reviewers helped to determine the quality of the translation. Feedback from CATIE’s reviewers made it clear whether the document needed to be completely retranslated or if it could be edited with some further discussion and used in the program’s education work. Translators who fared well under these reviews were added to a list of qualified translators for this project.

Translation process

Final versions of all material used in CATIE’s Hepatitis C Ethnocultural Education, Outreach and Social Marketing Program’s campaigns and resources are written in English and then translated into four languages (Simplified Chinese, Punjabi, Urdu and Tagalog) by the vetted translators. Every translation undergoes a medical review to ensure that the language and explanations are accurate. It then undergoes a community review to ensure that the language is accessible; part of this review involves assessing the reading level and checking that non-derogatory terms are used and that the text is gender neutral, where possible. Together these reviews assess the quality of the translation offered by CATIE’s translators.

CATIE found newcomer doctors to act as medical reviewers through its community partners as well as through its networking in the area of settlement. Community reviewers are often frontline service providers who work in settlement services or healthcare, and some of these individuals eventually worked on the project as bilingual facilitators. The original medical and community reviewers were members of CATIE’s initial community advisory councils; the fact that these individuals contributed to the program in multiple ways helped establish community partnerships and shape the direction of the project. An ongoing roster of translators and reviewers is maintained for all the languages in which CATIE currently works.

Stigma and language

Hepatitis C is a stigmatized disease and is often associated with drug use and sex work. The language used for substance use, sexuality and sex acts is frequently derogatory, and it is commonly used in such a way that community members may think hepatitis C is something that only affects certain kinds of people, further perpetuating the stigma associated with hepatitis C and substance use. CATIE made it clear in its work with its translators and advisory councils that it was looking for neutral language about substance use and sex, that health information is important for everyone and that the program’s materials are more likely to have an impact if people aren’t shamed.

The translation process

CATIE uses an 11-step process to translate materials used in the hepatitis C project:

  1. Translation – The final English version is sent to an approved translator.
  2. First medical review – This is conducted by a newcomer doctor, where possible.
  3. First community review – This is conducted by a frontline worker from one of our community partners or by our facilitators.
  4. Revision – Comments are returned to the translator, who makes revisions that make sense to them. At this stage, translators often state a case for their initial word choices (this action identifies subjective language areas for discussion).
  5. Second medical review – If the translator hasn’t accepted all of the reviewers’ initial edits, the medical reviewer often discusses their word choice with the community reviewer or one of the facilitators and makes a decision on the best word.
  6. Second community review - includes discussion/notes with another reviewer or facilitator on word choice where the translator hasn’t accepted edits. As long as the medical reviewer deems the language/explanations accurate, the community reviewer(s) get(s) the final say on what language is most accessible.
  7. Second revision – Additional edits are sent to the translator for final translation.
  8. The final translation is sent to draft layout or design.
  9. The layout is proofread by the medical and community reviewer.
  10. The document is sent to the printer or uploaded as a draft to the website.
  11. Proofs from the printer or draft website are given to community reviewers for final review of language and formatting.

Ever-evolving language

Language is ever-evolving in this area of work. Discussions around word choice are usually subjective and can sometimes continue indefinitely. Ultimately, CATIE chose to seek community leadership from frontline staff working directly in each community to determine what constitutes accessible and appropriate language. The rapid pace of development and approval of new hepatitis C treatments has required that information be updated annually. Even established translation services may not have strong capacity in all of the languages for the project. It is worth the trial and error to find a good translator who understands the values of the project and the project team’s approach to the work.

Display typefaces (print and online)

Determining the best display typefaces for print and online was a challenge for all languages, and it often took a number of tries to get everything to display properly in each format.

In print, this meant finding typefaces that could be used within Adobe InDesign that were legible. CATIE’s designer also had to use plugins for the program that could manage languages that read right to left.

Working online with Unicode typefaces1 and the display of non-roman character languages (such as Arabic script, Kanji and other writing systems) required some trial and error to get content to display correctly.

Although CATIE’s primary work in this program has been in four communities, CATIE has also translated key resources into six other languages, in addition to English and French. The typefaces that we use in print and online are as follows:

Hindi: Arial Unicode

Punjabi: Raavi (online), DRChatrik (print)

Urdu: Jameel Noori Nastaleeq (print), Arial Unicode (online)

Tamil: Arial Unicode. The original translation was done in encoding called Bamini that had to be converted through an online Unicode tool for use on our website. Corrections from our reviewers are also encoded in Bamini and need to be converted to Unicode for uploading online.

Bengali: Vrinda.

Tagalog: Any roman character display typeface works.

Vietnamese: Arial Unicode.

Spanish: Any roman character display typeface works.

Simplified Chinese: Arial Unicode

Arabic: Lateef (print), Arial Unicode (online)

Language expansion

Since 2011, the number of languages CATIE includes on its hepatitis C information website has increased to 11 in addition to English. To determine which languages to add, CATIE considers the past work of national hepatitis C immigrant community projects (such as the Canadian Ethnocultural Council’s work), international hepatitis C epidemiology and current immigration trends and subgroups in Ontario, as well as information gathered in meetings with different settlement organizations and in specific regions in Ontario.

Web-based information is currently available in English, French, Arabic, Urdu, Bengali, Punjabi, Hindi, Tamil, Simplified Chinese, Tagalog, Vietnamese and Spanish.

  1. An international encoding standard for use with different languages and scripts, by which each letter, digit or symbol is assigned a unique numeric value that applies across different platforms and programs.

Hepatitis C Ethnocultural Education, Outreach and Social Marketing Program: Building partnership with communities

CATIE
Ontario

Hepatitis C Ethnocultural Education, Outreach and Social Marketing Program: Building partnership with communities

2015

Early in the development of the Hepatitis C Ethnocultural Education, Outreach and Social Marketing Program (see case study for full description of the program), CATIE recognized that partnerships with immigrant-serving and settlement organizations working with the priority communities (Chinese, Filipino and South Asian) were going to be key to the program’s success.

By networking through a variety of avenues including conferences (such as the North American Refugee Health Conference and Metropolis), community organizations (such as AIDS service organizations) and networks (such as the Ontario Settlement Network and the Ontario Council of Agencies Serving Immigrants), CATIE identified and contacted key partners during the first year of the program.

In addition, CATIE sought buy-in and support from community leaders. This opened up opportunities for CATIE to work with clients and staff of immigrant-serving and settlement organizations across each community. These community leaders were found through conferences, cold calls and networking across organizations.

Community readiness

Each of the communities CATIE works with is supported by different community organizations, networks and infrastructure. There are well-established health networks and health organizations in the Chinese and South Asian communities, but there are no networks or health-focused organizations in the Filipino community. Each community was at a different stage for community development in health at the beginning of the program, and CATIE had to connect and coordinate with different resources to achieve the program’s goals.

Differences in programs and infrastructure in each community affected how CATIE has worked with the various immigrant groups. Although CATIE has had many opportunities to participate in larger networks and established community organizations focusing on health in the Chinese and South Asian communities, the opportunities have been more limited in terms of networks and health programming in the Filipino community. CATIE works more directly with various community groups in the Filipino community to overcome this barrier.

The role of community partners

Community partners played a key role on the community advisory councils that helped guide the project in the first few years. Members of the advisory councils had specialized roles, focusing on the development of the project’s initial translations, curriculum, resources or media campaign. Participation on the community advisory councils provided representatives from different groups in a community with opportunities for leadership, advocacy and connection. Sometimes the council meetings were the first time that these groups discussed health issues in their community.

Community partners also helped the program recruit facilitators and workshop participants, consulted on culturally appropriate health curriculum for an important issue and networked within their own communities. Community partners were compensated for the time their staff spent with the community advisory councils and for any facilitation or related project work.

Structure of community advisory councils

A separate community advisory council was set up for each of the four priority communities. The community advisory councils were structured to ensure adequate representation from the community in question. The roles on each council were aligned with the project’s work plan, with key council members assisting in the development of health information resources, workshop curriculum and the messaging for a media campaign. Each community advisory council included:

  • One community/key opinion leader. These individuals were often an executive director or leader of an organization supporting people within the community. They were also available for media interviews or to comment on the issue of hepatitis C.
  • One bilingual community facilitator. Skilled health facilitators were recruited through community partners, leadership programs and professional organizations.
  • One media specialist. These individuals researched content for use in our media literacy workshop and provided feedback on our media campaign.
  • Two workshop and resource reviewers. Each council had at least one medical and one community reviewer for translated materials and workshop content.
  • Representatives from one to three community partners. These individuals represented the community organizations where CATIE held its initial workshops: Media Literacy and Health Literacy and Immigrant Health and Hepatitis C.

In the initial years of the program, the program coordinators pursued partnership opportunities as they arose. Going forward, CATIE will write population-specific strategies annually that outline focused partnership work with community organizations and participation in networks as a way to reach specific groups and create links to community health. This kind of focused and tailored approach could be developed and implemented for different groups and settings.

 

Ribavirin (Ibavyr)

CATIE

Ribavirin (Ibavyr)

Summary

Ribavirin is a type of antiviral medication. It is approved in Canada for the treatment of chronic hepatitis C when used in combination with direct-acting antiviral medications. Ribavirin is taken orally twice per day with food. Potential side effects include tiredness, lower-than-normal levels of red blood cells (anemia), trouble sleeping and headache. Hepatitis C treatments are highly effective and cure over 95% of people with hepatitis C.

What is ribavirin?

Ribavirin is a type of antiviral medication called a nucleoside analogue. It is approved in Canada for the treatment of chronic hepatitis C when used in combination with direct-acting antiviral medications. Ribavirin is sold by itself under the brand name Ibavyr.

How does ribavirin work?

It is not clear exactly how ribavirin works to stop the hepatitis C virus, but in combination with direct-acting antivirals, it blocks the ability of the hepatitis C virus to make copies of itself in the liver. Over time, these actions eliminate the hepatitis C virus from the body.

Does ribavirin cure people of hepatitis C?

Hepatitis C treatments are highly effective and cure over 95% of people with hepatitis C. Ribavirin is used in combination with direct-acting antivirals to treat hepatitis C. However, on its own, ribavirin does not cure people of hepatitis C.

A cure for hepatitis C is also known as a sustained virological response (SVR). A person is cured if the hepatitis C virus is not detected in the blood 12 weeks after the end of treatment.

If a person is cured of hepatitis C, they can get hepatitis C again if they are exposed to the hepatitis C virus.

How do people with hepatitis C use ribavirin?

Ribavirin is taken orally twice per day with food. Dosage recommendations are 1,000 mg for a person weighing under 75 kg (165 pounds) and 1,200 mg for a person weighing 75 kg (165 pounds) or more. A healthcare provider may suggest a different dosage depending on the specific situation.

Ribavirin must be used in combination with direct-acting antivirals. Certain combinations are approved only for people with certain genotypes of the hepatitis C virus and/or a severe degree of liver injury. In Canada, ribavirin is approved for use with the following direct-acting antivirals:

  • Epclusa (velpatasvir and sofosbuvir)
  • Harvoni (ledipasvir and sofosbuvir)

Information about each of these direct-acting antivirals is included in separate fact sheets. The direct-acting antiviral regimen a person takes depends on which genotype they have, whether they have been treated before, the amount of liver injury, other health issues they have and other medications they are taking. The length of treatment will depend on which direct-acting antiviral regimen the healthcare provider prescribes.

How important is it to stick to treatment?

All medications work best when they are taken exactly as prescribed and directed. People taking ribavirin and direct-acting antivirals should take all their pills every day, as prescribed by their healthcare provider. It is very important to finish the entire course of treatment. This gives the treatment the best chance of working to cure hepatitis C.

What can be done about missed doses?

When a person taking ribavirin misses a dose and it is within six hours of when it should have been taken, it is important to take the missed dose immediately or as soon as possible. If it has been more than six hours since a dose was supposed to have been taken, that dose should be skipped and the next dose should be taken at the appropriate time. A double dose should not be taken. A person should continue their treatment until all doses have been taken.

If a person finds it difficult to stick to treatment, it is important to discuss this with their healthcare provider. Tips for sticking to treatment can be found in CATIE’s Hepatitis C: An In-Depth Guide.

Warnings

1. Combination therapy

Ribavirin must be taken in combination with direct-acting antiviral medications such as Epclusa or Harvoni. All of the warnings that apply to those medications also apply to people considering ribavirin. For more information on hepatitis C medications, see the treatment fact sheets.

2. Pregnancy

Treatment that includes ribavirin must not be taken by anyone who is pregnant or planning a pregnancy. Ribavirin can cause severe birth defects and can also be toxic to sperm. Ribavirin should not be used by either partner for at least six months before trying to get pregnant. Two reliable forms of contraception (one for each partner) are recommended during treatment with ribavirin and for six months after treatment completion.

3. Breastfeeding/Chestfeeding

People with infants who are taking ribavirin should not breastfeed or chestfeed their children. It is not known whether the medication is present in human milk.

4. Cardiovascular effects

Some people who have low levels of red blood cells and/or iron in the blood (anemia) have developed heart problems, including heart attacks, when they used ribavirin. Anyone who experiences pain, pressure, burning or heaviness in the chest, sweating, trouble breathing, light-headedness or discomfort in their upper body should seek medical attention immediately.

5. Blood problems

Ribavirin can cause some of the red blood cells to die, which can lead to anemia. Regular blood tests are important to monitor for this problem. The dose of ribavirin may be reduced if a person’s blood counts fall too low. People taking ribavirin should regularly visit their healthcare provider for checkups and blood tests.

6. Lactic acidosis

Lactic acidosis is a condition where high levels of lactic acid build up in the blood. It may occur in people with HIV who use ribavirin, particularly if they also use other HIV medicines like ddI (didanosine, Videx EC) and/or d4T (stavudine, Zerit). The following symptoms can develop when a person has lactic acidosis:

  • unexpected tiredness
  • nausea and/or vomiting
  • abdominal pain
  • shortness of breath

Anyone experiencing any of these symptoms should talk to their healthcare provider immediately.

7. People under the age of 18 years

The safety and effectiveness of treatment with ribavirin for people under the age of 18 years has not been determined.

8. Special populations

People with the following conditions should speak with their healthcare provider about the most appropriate treatment options for them:

  • liver problems other than hepatitis C
  • severe liver injury such as decompensated cirrhosis
  • previous liver, kidney or other organ transplant
  • severe kidney injury or on dialysis
  • history of significant or unstable heart disease
  • co-infection with hepatitis B
  • blood disorders such as thalassemia or sickle cell anemia

Ribavirin is generally safe. Anyone who is considering treatment that includes ribavirin should discuss all of their medical conditions with their healthcare provider.

Side effects

When ribavirin is taken with other medications, the most common side effects are:

  • fatigue (extreme tiredness)
  • difficulty sleeping
  • headache
  • nausea
  • low numbers of red blood cells and iron in blood (anemia)
  • shortness of breath
  • lack of energy or strength

This is not a complete list of side effects for ribavirin.

Drug interactions

Some prescription drugs, over-the-counter drugs, herbs, supplements and other drugs (both legal and illegal) can interfere with the absorption and/or the effectiveness of ribavirin. This is called a drug interaction.

Some drugs taken for other conditions can interact with ribavirin by increasing or decreasing the level of one or both drugs in the body. Increased levels can lead to new or more severe side effects. Decreased levels may mean that the drug won’t be as effective.

It is important that people discuss all medications, supplements, herbs and other drugs (both legal and illegal) they are taking with their doctor, nurse or pharmacist. If a person has more than one healthcare provider or pharmacist, it is possible for drug interactions to get missed. Using the same pharmacy for all prescriptions can be helpful.

This fact sheet is not comprehensive and lists only some of the potential and actual drug interactions with ribavirin. Speak with a pharmacist to find out more about drug interactions with ribavirin.

The following medications are contraindicated (should not be used) with ribavirin:

  • HIV medications that contain ddI (didanosine, Videx EC)

When ribavirin is taken with the following medications it could potentially cause significant drug interactions:

  • the HIV and hepatitis B medication lamivudine (3TC)
  • the HIV medications stavudine (d4T, Zerit) and AZT (zidovudine, Retrovir, and in Combivir and Trizivir)
  • the medication to lower immune response or prevent organ transplant failure, azathioprine

Availability

Ribavirin, manufactured by Pendopharm, has been approved by Health Canada and is available in Canada. Pharmacists are a good source of information about public and private health insurance coverage for ribavirin.

CATIE’s online module “Federal, Provincial and Territorial Drug Access Programs” also contains information about Canadian drug coverage.

Acknowledgement

We thank Alnoor Ramji, MD, FRCPC, for expert review.

Reference

Pendopharm. Ribavirin (Ibavyr). Product monograph. March 15, 2022.

Author: Kushner R

Updated 2025