Background
Cardiovascular diseases (CVD) are a leading cause of morbidity and mortality worldwide. Canadian data have suggested that Indo-Asians (including those whose ethnicities trace back to Afghanistan, Bangladesh, India, Myanmar, Nepal, Pakistan or Sri Lanka) have significantly higher rates of CVD morbidity and mortality compared with several other ethnicities [
1,
2]. Canadian migrant South Asians endure 2-5 fold higher rates of CVD morbidity and mortality compared with individuals of European descent [
1‐
3]. The proportional mortality from ischemic heart disease (as a proportion of all-cause mortality) is higher in Canadian men and women of South Asian descent, (42% and 29%, respectively) as compared with men and women of European (29% and 19%) descent [
2]. A more recent Canadian study found lower long-term mortality among South Asians compared with white patients with diabetes following acute myocardial infarction (AMI) [
4]. However, AMI occurred at a younger age (average of 11 to 12 years) and recurrent AMI was 20% more likely in South Asians compared to white patients regardless of whether they had diabetes or not.
The higher prevalence of undetected and or inadequately managed risk factors including diabetes, central obesity, hypertension (HBP) and dyslipidemias, begin to explain the higher CVD risk profile [
1,
5,
6]. Recent studies in the Indo-Asian community of Calgary Alberta [
7‐
9] have determined that nearly one quarter of adults (>45 years of age) presenting for community-based screening have diabetes, 78% have dyslipidemias and 55% hypertension. Of significance, the control rates for hypertension and dyslipidemias in those screened were 50% lower than those reported for the general Canadian population [
10]. There is clearly a need for culturally appropriate initiatives that address the prevention and control of such modifiable risk factors.
Indo- Asians are among the fastest growing minority populations in Canada. The 2006 Canadian census [
11] determined that the self-identified Indo-Asian population rose by 37.7% from 2001 to represent one quarter of all visible minorities in Canada. Further, Indo-Asians comprise the largest and fastest growing cultural population in Calgary (only recently surpassing the rates for Chinese immigration) representing nearly 4% (approx 40,000) of Calgary's population (1,000,000+). Given such growth and the evidence that Canadian Indo-Asians are particularly susceptible to the CVD consequences of migration [
1,
2], it is of utmost importance to address access, language, and health literacy barriers in order to reduce this significant and disparate health risk.
Barriers to optimal health play a major role and include access, language and lower health literacy. Such obstacles may limit knowledge and appreciation of the ramifications of CVD and its modifiable risk factors [
12‐
16]. Health literacy is 'the degree to which and individual can obtain, process, and understand the basic health information and services they need to make appropriate health decisions' [
17,
18]. Some have suggested that health literacy is at least as strong or stronger a predictor of health status than age, income, employment status, education level, self efficacy, race or ethnic group [
19]. However, research on the relationship between literacy and health has been limited by the inability to separate out these complex factors that co vary with literacy. Enhancing health literacy, particularly of at-risk cultural minority groups, is an imperative step in improving health disparities.
This project represents the first step in a two-phase project aimed at increasing health literacy, hypertension knowledge, and health decision-making in an Indo-Asian population in Calgary, Alberta, Canada. This first phase was aimed at tailoring and evaluating the acceptability of adapted and translated versions of an existing English evidence-based public education pamphlet focused on hypertension.
Discussion
The goal of this community-based project was to adapt and determine the acceptability of an evidence-based hypertension educational pamphlet tailored to fit the needs of a local Indo-Asian population. Working with members of the target community to identify culturally specific educational needs, language preferences and to test the suitability of the materials allowed us in a five step process, to effectively adapt and translate existing evidence-based English language educational materials. Overall, participants found the educational tools highly acceptable. Participants felt the written and pictorial information was presented in a comprehensible fashion that helped them to better understand hypertension, its complications, treatment and prevention.
Development of these highly acceptable materials can be attributed to the active participation of and the strong partnership with the Indo-Asian community. Ninety-nine percent of the 100 CHAMP follow-up program participants agreed to evaluate and 90% had read the educational materials, suggesting a willingness to learn and play a role in program planning. Further, the target community was pivotal in securing the quality assurance of the materials at all steps of the development and evaluation.
Although self-selected, the 99 respondents had CVD risk factor profiles similar to those of the 248 participants that qualified for the initial CHAMP sessions, and to those reported in the literature [
1]. The majority were at high risk for CVD with a high prevalence of uncontrolled risk factors. Despite this, 55/99 or 55% did not report having hypertension or related medication use and less than 10%, reported having experienced any CVD events. This mixed group represents an ideal target group for these educational materials whose objective is to promote improved awareness, increased prevention and management of their modifiable CVD risk factors.
Extensive literature and web-based search revealed that other than resources provided by the Heart and Stroke Foundation (
http://www.heartandstroke.ca. Accessed October 12, 2009) dealing broadly with heart disease, stroke and their risk factors, these materials are unique as hypertension-specific educational materials that are appropriately translated for the Indo-Asian community. As such, these materials have the potential to address the awareness, prevention and treatment gap for hypertension in this high risk population.
There are several limitations to this study that need to be addressed by further research. First, initial CHAMP sessions provided an excellent forum to disseminate the adapted and translated Public Hypertension Recommendations. However, at the follow-up sessions, each participant took approximately 25 to 30 minutes to complete the ICA-CHAMP project procedures after which they completed the educational tool evaluation questionnaire. Time and the quantity of information relayed to the participants may have rendered them less attentive to the evaluation procedure. Additionally, the average 8.5 months between receiving and evaluating the materials may have affected recall and be responsible for those that did not provide a response or answered "Not sure why" to the question (Table
1), "Please tell us what part was difficult" or "Do not know what" to the question (Table
1), "What information specifically was missing?"; although participants made no mention of this being a problem.
Secondly, we did not evaluate the literacy skills of our participants prior to their evaluating the educational materials. Careful review of the literature revealed no validated methods of testing literacy levels in Indo-Asians. However, one study [
33] piloted a brief literacy assessment in their British study of South Asians with diabetes. Some of the information collected in this assessment was obtained in our study; such as language preference, and reasons for not reading the materials. However, due to possible sensitivities around admitting the inability to read, this cannot be assumed to represent any form of literacy assessment. To compensate for this, we involved the target community in all steps of the development and evaluation of the materials. Reading grade level is a quantitative determination of reading difficulty and estimates the average grade level a person must have completed to be able to understand the (English) material. The goal for our materials was a grade level of six. There are no data on literacy skills of Indo-Canadians. However, there are data [
34] suggesting that immigrants whose mother tongue is neither English nor French are almost three fold more likely to have low literacy skills (i.e. at the 6
th grade level or below). Furthermore, the Fry [
26], and Flesch-Kincaid [
27] are two accepted methods that consider a grade level of six or below as being superior for learners with low health literacy levels [
22,
24].
Coupled with the simplified pictures and diagrams, we were able to achieve a high degree of attention (interest in reading the materials) and acceptability in this population that clearly encompassed a broad range of literacy levels.
Thirdly, only three participants evaluated the Dari and none evaluated the Hindi versions, thus not allowing us to form any conclusions on these versions. Future interventions will strive to include more Hindi and Dari speaking participants in order to evaluate these educational materials.
Finally, because the participants in this small study (n = 100) were self-selected and not recruited in an epidemiological fashion, they are unlikely to fully represent the diversity within the Calgary Indo-Asian community itself. This may have lead to a bias favouring the characteristics of the particular groups represented herein, thus limiting the generalisability of study findings beyond this research setting. Additionally, this study design excluded those participants that cannot read. Larger, epidemiologically designed and controlled studies of health information delivery (e.g., audio-forms) need to be undertaken in order to include those who cannot read, those whose language has no written form [
33] and those Indo-Asian sub-cultures not adequately represented herein. On the other hand, 66% of the sample read the English versions, which is consistent with the 2006 census data [
11] indicating that 70% of Calgary's Indo-Asian community speaks English. This suggests that our study population may be somewhat representative of the large proportion of English speaking community members that may benefit from educational materials in English.
There is an abundance of literature guiding the development of health educational materials for low literate and multi-cultural populations. However, the vast majority of this research involves evaluating health educational materials that are written (or illustrations captioned) in English. Furthermore, there is a dearth of literature on health education research in hypertension for Indo-Asians. However, review of the most relevant literature reveals a consistent emphasis on the importance of cultural assessments, involving the target audience and the importance of accounting for low rates of literacy, even in the learner's native language [
22,
24,
29,
33].
The importance of involving our target audience in this health education and research was best exemplified in a British study of South Asians with diabetes [
33]. The collection of questionnaire data dealing with diabetes self-management was found to be problematic because patients had poor literacy skills and failed to understand the meaning of the questions. The collection of valid data was compromised. To overcome this barrier they recruited individuals with diabetes from the community to participate in focus groups to successfully address and modify the content and mode of delivery of a self management questionnaire. In a similar fashion, Kai and Hedges [
35] successfully used training and facilitation of resident community members to conduct semi-structured interviews within their own communities to inform the development of a service delivery model aimed at addressing a disparate ethnic health need.
Our five step iterative approach to the development and evaluation of the materials mirrored, in part that of Makosky and Daley [
36]. For the cross-cultural adaptation of materials for Native Americans, they also used a modified SAM, in addition to two independent readability assessments along with target community input to successfully tailor and evaluate educational materials on smoking cessation in English. Specifically, they also found the SAM assessment inadequate for determining cultural appropriateness, suggesting that current validated tools may not be fully relevant or valid for non- English speaking people and used a learner verification method to modify their original untailored educational tools. Content experts undertook rigourous scientific review of their untailored materials while ours were originally developed by content experts. And finally, they had 2 independent individuals specially trained in the use of SAM review the materials, while we used a focus group format with a 12 member key informant team that was asked to review and comment on the materials guided by the factors outlined in the 17 point checklist and SAM tools.
We hired certified and experienced translators that unfortunately provided a very literal translation of the materials. This difficulty was addressed in our study by the process of back translation. This challenge was minimized in other studies [
33,
37,
38] by the use of bilingual community members (with help from content experts) for the concurrent translation and adaptation of the original English source materials. Conceptual and cross-cultural equivalence of the materials was achieved in fewer steps and the process obviated the need for formal assessment of the original versus the adapted English versions.
The goal of this project was to tailor and evaluate the acceptability of the adapted and translated versions of an existing English version educational pamphlet. We did not formally evaluate the superiority of the adapted against the original English version. The adapted English version was designed following the recommendations of the 12 member key informant team. They had carefully reviewed the original version following the 17 point checklist of attributes and the SAM protocols along with making suggestions aimed at rendering it more culturally appropriate. Further, along with the readability assessment, and the informal assessment by the 56 English reading community members, the adapted version was considered at least equivalent to the original. Paradoxically, 90% of the individuals who originally stated that the original was no more difficult to understand than the adapted version stated that the pictures in the adapted version helped them to better understand the written information. This finding suggests at minimum, that the adapted version was equivalent or even superior to the original version. However, the question arises as to whether the original version even required adaptation for the English reading target audience. Further testing (below) will help to address this question.
All participants who read the translated versions of the pamphlet (Group 2) appreciated receiving the information in their language of preference and, like those in Group 1, found that the pictures helped to increase their understanding of the information. Further probing revealed that it was the additional pictures in the adapted version that assisted with a better understanding. This finding is supported by 2 review articles [
39,
40] showing that adding pictures to written (and spoken) health information can significantly improve patient attention (interest and acceptability), recall, comprehension and behaviours. They also present evidence suggesting that if pictures are appropriately simplified, they can be particularly helpful to those with low literacy skills.
Given the high level of acceptability of these materials, we believe the materials (original, versus adapted, and translated versions) are ready for formal randomized controlled testing among English and non-English literate ethnic community members to determine whether the adapted version is superior to the original version and to determine the effect upon change in hypertension knowledge and health decision-making of each version.
Implications for further research and dissemination
A recent survey in Canada [
34] suggested that immigrants whose mother tongue is neither English nor French are almost three fold more likely to have below basic (6
th grade level or below) literacy skills. Since the majority of patient health information is written at a 10
th grade or higher [
24], a clear comprehension gap exists for much of the population. Tailoring health information to address lower health literacy skills can significantly increase acceptability, comprehension, recall and of particular importance, health behaviours [
22,
39,
40] such as medication adherence.
The principles and methods of cross-cultural adaptation and translation of educational materials used in this study follow published guidelines [
37,
41] and have been validated in numerous other settings; for example, materials for smoking cessation in Native Americans [
36], for obtaining informed consent in Indo-Asians [
34] and for quality of life measures for Hispanic American patients [
38]. The high level of acceptability of the materials within the target audience suggest that this process may be useful to other researchers who wish to develop targeted multicultural public educational materials for multiple purposes, within a broad range of multiethnic communities internationally.
It is imperative to involve the target community in identifying the key health issues as well as in the creation and review processes for health education materials [
21,
23,
24]. In collaboration with the target community, we were able to modify the standardized/validated processes for creating and evaluating English language and translated materials to suit our target community. Scientific accuracy, reducing the complexity and achieving a 6
th grade readability level, simplifying the pictures and finally, ensuring cultural appropriateness of the educational materials are fundamental to improving health literacy and patient engagement. If individuals do not have the capacity to obtain, process and understand basic health information, they will not be able to make appropriate health decisions.
Competing interests
The authors declare they have no competing interests. Funding agencies played no role in the design of the study or in any aspects of data collection, analysis, interpretation and reporting.
Authors' contributions
CJ conceived of the study and along with SM, AOA, and MS made substantial contributions to conception and design, and acquisition, analysis and interpretation of data. CJ, SM, KK, and MS were involved in drafting the manuscript, and along with S Mahon and NC were involved with revising it critically for important intellectual content. All authors have given final approval of the version to be published.