To our knowledge, this is the first study to examine the cultural adaptation of the Illness Perception Questionnaire-Revised for use in African Americans and investigate the reliability and validity of this adapted questionnaire. The results of the study showed that the culturally- adapted IPQ-R for African Americans with diabetes showed preliminary construct, convergent and predictive validity, and reliability.
The new factor structure of the culturally-adapted IPQ-R was distinct from the original IPQ-R. The original ‘consequences’ domain was represented as two factors (external and internal consequences) in the new structure while ‘emotional representations’ domain was represented as ‘present’ and ‘future’ factors. ‘Personal control’, ‘treatment control’ and one item originally part of the ‘sociocultural influences’ domain together formed the ‘control’ domain. ‘Illness coherence’ was conceptualized as ‘illness interpretations’ to more accurately capture the additional culturally-adapted items within this domain that represented an active process of interpreting the illness than a static understanding. As well, we observed a new sociocultural domain that further delineates the unique perceptions of diabetes representations among African Americans. This new factor structure reflects the limitations of the IPQ-R among African Americans, reported by authors who showed low reliability of the same IPQ-R subscales (timeline, consequences, control, illness coherence, and emotional representation), and stated that “findings of beliefs in these areas should be interpreted cautiously” [18]. In addition, they questioned the cultural appropriateness of the IPQ-R with African Americans, due to the psychometric problems of the questionnaire when used with African Americans.
Regarding the construct validity of the measure, it was interesting to see that the factor structure we expected was not observed. We projected that since the original factor structure of the IPQ-R was a 7-factor structure, by adding the new sociocultural domain, we would end up with an 8-factor structure. Instead, we observed a new 9-factor structure for the culturally adapted measure that separated the IPQ-R domain, ‘consequences’, into external and internal consequences, as well as ‘emotional representations’ into present and future emotional representations. There are some reasons why this may have occurred.
It is possible that for African Americans with diabetes, there is more depth to the way diabetes is perceived and how it affects their social and environmental contexts, including relationships, family, work, etc., compared to other racial/ethnic groups. For example, our initial exploratory qualitative work showed how diabetes may have affected the relationship with family and friends, including the stigmatizing effect of the disease in the community [7, 8]. This factor may not be characteristic of Western European populations upon which the original IPQ-R was validated. Prior studies show that African Americans have strong social norms and community influences that impact their health practices, self-care and possibly illness perceptions [22]. As well, there is evidence for the role of family support in African Americans self-management of chronic illnesses like diabetes [22, 23]. If illness perceptions are related to diabetes self-management including medication adherence, then a culturally adapted questionnaire that captures the sociocultural influence of family and community is reflected in the new factor-structure.
Related to the ‘consequences’ domain, the internal consequences domain in the adapted IPQ-R reflects how food is represented within African Americans culture. Prior studies have shown how dietary options based on cultural background are important modifications to make in nutrition and lifestyle education [24–26]. Since diabetes self-management usually includes making dietary changes, it is not surprising that African Americans’ perceptions of diabetes reflect the notion of how the illness affects their ability to enjoy culturally relevant meal options. Aside from food, the factor structure of the culturally adapted IPQ-R may reflect the burden of diabetes on African Americans compared to other racial/ethnic groups, which may not have been captured in the IPQ-R [24, 25].
In the new factor structure, we observe how the perception of diabetes control among African Americans is captured in other ways besides self-control, i.e., control is influenced by the family and the need to increase self-agency to stay in control of diabetes. This need for self-agency reflects the prior and current marginalization, lower social position, and lack of self-agency that African Americans experience [27, 28]. These factors are possibly captured in the need for self-advocacy to improve disease self-management.
Instead of emotional representations due to the IPQ-R captured in one domain, the new factor structure of the culturally adapted IPQ-R captures the underlying layers of emotional responses to having diabetes among African Americans in current instances and in the future. Though African Americans with diabetes currently experience the burden of diabetes in their life, they also think beyond their current situation to future worries, such as intergenerational effect regarding how the disease may affect their children and grandchildren. The tight knit community in most African American households and the implications of diabetes in the family are reflected in their perceptions of diabetes and are characterized in the new factor structure of the culturally adapted IPQ-R [29, 30].
It was interesting to observe how illness coherence is conceptualized differently among African Americans with diabetes in the new factor structure. The original IPQ-R captures a patient’s understanding of an illness. However, the culturally adapted IPQ-R captured a more active process of possible interpretation of the disease, beyond a static understanding of it. Hence, we see the unique sociocultural influences of religion and faith represented in African Americans worry and control of diabetes, which is captured in the illness interpretation factor [9].
Though unique sociocultural influences on African Americans’ perceptions of diabetes are reflected throughout the culturally adapted IPQ-R, we also observe a specific domain that captures the racial identity of what it means to be African American/Black, the underlying impact of racial discrimination and how this influences diabetes knowledge, perception of disease susceptibility, stigma of diabetes within the community, and the influence of socioeconomic status in the development of diabetes. Prior studies have reported the perception of racism influencing the perception of illnesses such as diabetes and hypertension [30, 31]. We perceive that the newly included sociocultural domain in the culturally adapted IPQ-R recognizes the influence of these important perceptions, based on African Americans’ lived experiences, which was not represented in the original IPQ-R.
Our findings showed good preliminary convergent and predictive validity of the culturally-adapted IPQ-R based on the association of illness perceptions with beliefs in medicines and medication adherence. This exploratory psychometric investigation show that the adapted IPQ-R are better applicable to African Americans' culturally influenced beliefs about diabetes and should be considered when their illness perceptions are assessed in behavioral interventions that target self-management behaviors like medication adherence.
Many African Americans do not strongly accept the biomedical explanations for chronic diseases like diabetes but often attribute factors outside of their personal control in disease causality [8, 32, 33]. AUTHOR et al., 2009 further showed how the personal control sub-scale of the IPQ-R when used with African Americans showed low reliability, indicating a lack of validity of its use with African Americans [17]. The culturally adapted IPQ-R may assess these unique beliefs about diabetes in African Americans, which can have a significant impact on self-management behaviors, like medication adherence, which are necessary for diabetes control and quality of life.
The strengths of this study are the use of a rigorous exploratory, mixed methods design to culturally adapt the IPQ-R for African Americans with diabetes. In addition, to our knowledge, this is the first study to explore and consider how to improve the cultural appropriateness of the IPQ-R among African American/Blacks with diabetes. We report several study limitations including a small sample size used for test-retest reliability. Due to the COVID-19 pandemic, face-to-face research was stopped, and alternate modes of surveys did not yield responses. The test-retest reliability results should be interpreted with caution until similar tests can be conducted with larger samples. Also, in this questionnaire only initial perceptions of diabetes were captured among a middle age group of African Americans living in a Midwestern city in the US, which may not reflect the perceptions of diabetes among the general population of African Americans with diabetes. Future iterations of the study must be conducted with African American populations from different regions and age groups. To reduce responder burden, we minimized the length of the survey by not including every IPQ-R item. We included the unchanged original IPQ-R items but excluded items that were changed/reworded during the development process of the adapted IPQ-R. This meant that we could not individually compare each original item with its adapted version. A future study will consider the inclusion of all items in both the IPQ-R and culturally-adapted IPQ-R with a larger sample. Finally, the testing of the questionnaire using confirmatory analytical approaches will be considered in a future study.