Cognitive Interviewing for Cross-Cultural Adaptation of Pediatric Antiretroviral Therapy Adherence Measurement Items

There are 2.3 million children living with HIV worldwide, almost 90 % of whom live in sub-Saharan Africa. Access to antiretroviral therapy (ART) for HIV treatment has dramatically increased in resource-limited settings in recent years and allows more HIV-infected children to survive into adolescence and adulthood.

Our objective was to improve the understandability of pediatric antiretroviral adherence measurement items for use in resource-limited settings through cognitive interviewing with pediatric caregivers and HIV-infected adolescents in Kenya.

We compiled adherence measurement items through a systematic literature review and qualitative work. We conducted cognitive interviews assessing the items with caregivers of HIV-infected children enrolled in HIV care in Kenya and conducted group cognitive assessments with HIV-infected adolescents. We used verbal probing and guided “thinking aloud” to evaluate relevance, comprehension, recall, and sensitivity/acceptability. Analysis followed a systematic sequence of review, compiling data by item, and coding responses.

We interviewed 21 Kenyan parents and guardians and 10 adolescents (mean age 15 years, SD 1.8) on antiretroviral therapy for a mean of 3.6 years. Cognitive interviews optimized item-response options, wording, and content. Some participants demonstrated difficulty with “think aloud” processes, but verbal probes were easily answered. Comprehension problems were found for key language concepts such “missed doses” and “having side effects.” Key findings for response options included differences among responses to various recall periods, with preferences for the shortest (one 24-h day) and longest recall periods (1 month); difficulty describing specific drug information; benefits for including normalizing statements before asking for sensitive information; and challenges processing categorical frequency scales. Important content areas for inclusion included dose timing, disclosure, stigma, and food insecurity.

Cognitive interviewing is a productive strategy for increasing the face validity and understandability of adherence measurement items, particularly across cultures. Interviews in Kenya suggested adherence measurement modifications of relevance for other resource-limited settings.