Lessons Learned: Cultural and Linguistic Enhancement of Surveys Through Community-Based Participatory Research

Abstract

Background: Surveys are frequently implemented in community-based participatory research (CBPR), but adaptation and translation of surveys can be logistically and methodologically challenging when working with immigrant and refugee populations.

Objective: We sought to describe a process of participatory survey adaptation and translation.

Methods: Within an established CBPR partnership, a survey about diabetes was adapted for health literacy and local relevance and then translated through a process of forward translation, group deliberation, and back translation.

Lessons Learned: The group deliberation process was the most time-intensive and important component of the process. The process enhanced community ownership of the larger project while maximizing local applicability of the product.

Conclusions: A participatory process of survey adaptation and translation resulted in significant revisions to approximate semantic, cultural, and conceptual equivalence with the original surveys. This approach is likely to enhance community acceptance of the survey instrument during the implementation phase.

CBPR is a means to collaboratively investigate health topics within a community whereby community members and academics partner in an equitable relationship through all phases of the research and programming process.¹ It is an intuitively appropriate approach for addressing health disparities in a sociocultural context by fostering collaborative engagement between researchers and community members to select research topics, collect data, and interpret results.^2-5 Further, CBPR has demonstrated success in targeting health issues among immigrant and refugee populations.^2-4

Surveys are commonly employed in CBPR across a variety of health topics. When combined with qualitative work and epidemiologic data, surveys add a critical step to comprehensive, pre-intervention assessment of a health issue in a very local context. However, surveys are often difficult to implement in CBPR with immigrant and refugee populations. Survey instruments with acceptable validity to answer questions that are important for partnerships are frequently not available for diverse languages and ethnicities. Beyond the challenges of semantic equivalence, simple translation of existing English-language surveys often lose conceptual equivalence with the original survey; likewise, translated surveys run the risk of ignoring differences in cultural norms that may impact participant reflection on a health topic.⁶ Accordingly, there are recommended approaches described in the literature aimed at mitigating these pitfalls.^7-9

In CBPR, this time- and resource-intensive process of survey translation is daunting. However, a participatory process of survey translation using one of these frameworks has the potential to not only improve the survey product, but also to strengthen existing partnerships and eventual survey implementation.^10,11 It is with this shared expectation of benefit that our established CBPR partnership in Rochester, Minnesota, conducted participatory translation of a multi-instrument diabetes survey from English to three languages: Cambodian, Spanish, and Somali. In this paper, we use our experience with the Somali translation to frame lessons learned from the process.

The diabetes epidemic results in significant societal and health care costs, affecting 8.3% of the U.S. population with an economic impact estimated to be $174 billion annually.¹² As a whole, immigrants and refugees arrive in the United States with a lower prevalence of diabetes than the general population, but rates begin to rise shortly after arrival.^13-15 Once diagnosed with diabetes, immigrants and refugees are less likely to adhere with diabetes care recommendations than U.S.-born patients with diabetes, thereby placing them at higher risk for complications.¹⁶ Further, we have recently documented health disparities among Somali patients with diabetes in our community.¹⁷ Therefore, as one piece of a needs assessment to inform future intervention work aimed at reducing these disparities, we intend to conduct a survey among members of the Somali community (among other immigrant and refugee communities) in Rochester who have diabetes, to understand their disease-related knowledge, attitudes, and behaviors. Herein, we have described lessons learned from the participatory process of survey translation from English to Somali.

METHODS

Partnership Description

In 2004, a community–academic partnership developed between Mayo Clinic and Hawthorne...