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

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Abstract

Background

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.

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

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Acknowledgments

This research was supported by a grant to Dr. Vreeman from the National Institute of Mental Health (5K23MH087225-03) as well as by a grant to the USAID–AMPATH Partnership from the United States Agency for International Development as part of the President’s Emergency Plan for AIDS Relief (PEPFAR). We thank Eunice Gift Walumbe and Josephine Alouch Okoyo for their interviewing work and all the parents, guardians, and children in Kenya who shared their thoughts and experiences.

Disclaimer

The views expressed in this article are those of the authors and do not necessarily represent the view of the Indiana University School of Medicine or the Moi University School of Medicine. The authors have no conflicts of interest to disclose. The first author had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

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Authors and Affiliations

  1. Children’s Health Services Research, Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA

    Rachel C. Vreeman

  2. USAID–Academic Model Providing Access to Healthcare (AMPATH) Partnership, Eldoret, Kenya

    Rachel C. Vreeman, Winstone M. Nyandiko, Samuel O. Ayaya, Eunice G. Walumbe & Thomas S. Inui

  3. Regenstrief Institute, Inc, Indianapolis, IN, USA

    Rachel C. Vreeman & Thomas S. Inui

  4. Department of Child Health and Paediatrics, Moi University School of Medicine, Eldoret, Kenya

    Winstone M. Nyandiko & Samuel O. Ayaya

  5. Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA

    Thomas S. Inui

  6. Children’s Health Services Research, Health Information and Translational Sciences Building, Suite #1000, 410 W. 10th St, Indianapolis, IN, 46202, USA

    Rachel C. Vreeman

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  1. Rachel C. Vreeman
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  2. Winstone M. Nyandiko
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  3. Samuel O. Ayaya
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  4. Eunice G. Walumbe
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Correspondence to Rachel C. Vreeman.

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Vreeman, R.C., Nyandiko, W.M., Ayaya, S.O. et al. Cognitive Interviewing for Cross-Cultural Adaptation of Pediatric Antiretroviral Therapy Adherence Measurement Items. Int.J. Behav. Med. 21, 186–196 (2014). https://doi.org/10.1007/s12529-012-9283-9

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  • DOI: https://doi.org/10.1007/s12529-012-9283-9

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