This story is part of a series. The first part is available here.
Clinicians at BC Children’s Hospital strive to provide care that reflects each family’s unique needs and background. However, this is challenging when their community has been left out of the research that shapes clinical practice.
Inclusivity is a fundamental principle in health care, and language plays a critical role in achieving it. One in four Canadians speak a language other than English or French at home. Although this number continues to grow, a majority of research still excludes certain participants based on their language ability.
A recent study, published in Ethics, Medicine and Public Health, by Dr. Quynh Doan, Dr. Manish Sadarangani, and their team at BC Children’s Hospital Research Institute (BCCHR) surveyed 22 pan-Canadian research networks and pediatric academic centres. They wanted to understand how often researchers make accommodations for participants with limited English proficiency (LEP) and what barriers prevent them from making those accommodations. Most survey respondents said they excluded participants with LEP at least some of the time, and about half said they either rarely or never included accommodations for participants with LEP. When asked why, the most common barriers included inadequate funding and time to provide language translation and interpretation services, and the lack of a centralized language services resource.
When English language fluency is a prerequisite to participating in research, many people are automatically excluded. When research doesn't represent the full range of people in our communities, its results might not apply to everyone. This can deepen health inequities and impact health outcomes for communities that were not included in research.
First author and graduate student Alyssa Chong suggests that change needs to happen right at step one. New research protocols and funding applications should have a language access plan in place that outlines the costs and time needed to use translation and interpretation services during their study. A different study, also published in Ethics, Medicine and Public Health, found that approximately one-third of research proposals submitted for ethics review excluded participants with LEP. By addressing language accessibility early in the process, researchers can more effectively plan for the time and funding needed.
“A language access plan has to be explicit,” says Alyssa. “Researchers must ask themselves: Who are we including? What languages do they speak, and how will we be providing support?”
Jennifer Claydon, director of Clinical Research Operations at BCCHR, says that research institutions have a responsibility to support investigators who may need assistance in developing a language access plan.
“It’s very challenging for investigators who feel that they have to reinvent the wheel as opposed to being able to come to a central place that has the expertise and knowledge to share about all the necessary steps,” says Jennifer.
Language barriers often overlap with other barriers such as lower socioeconomic status, limited health knowledge, lack of stable internet or access to technology, and immigration status. Together, these can make it harder for families to join and stay involved in research studies, leading to less diverse results that may not reflect all children's needs. Jennifer says cultural safety training can help research personnel connect with participants of all backgrounds to ensure a positive research experience.
The Clinical Research Support Unit at BCCHR plans to soon launch a pilot study that will create and evaluate a team of multilingual research staff who can support language inclusion in research. Investigators will be able to contact this group for help with translation, interpretation, or advice on recruiting participants more equitably.
“We’re trying to help researchers navigate these challenges by providing information and access to the language-related resources they need,” says Jennifer.
More work needs to be done before accommodations for participants with LEP becomes the norm. Researchers can start planning earlier to account for the additional costs and time needed to utilize language translation and interpretation services. At an institutional level, having a centralized place where researchers can access language services would drive down costs and make it more convenient to provide language accommodation services. By mitigating the gap between research participants who speak English proficiently and those who have no or limited proficiency, we can work towards a future where, through comprehensive research, efficient and inclusive health care is available to all children.
If you are a BCCHR researcher and would like to learn more, or have a consultation to develop a language access plan, please reach out to mrt@bcchr.ca.
PHSA’s Provincial Language Services provides high-quality language access services for British Columbians accessing the health care system. These include interpreting, translation, and intervenor services, as well as support for people who are Deaf, Deaf-Blind, Hard of Hearing, or Francophone. Talk to your health care provider about how to coordinate these services for your health appointments, or visit phsa.ca/pls for more information.
