Cognitive Interviewing for Cross-Cultural Adaptation of Pediatric Antiretroviral Therapy Adherence Measurement Items
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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.
KeywordsAdherence HIV Cognitive interviewing Measurement Resource-limited setting
- 1.Antiretroviral therapy for HIV infection in infants and children: towards universal access. Geneva, Switzerland: World Health Organization; 2010.Google Scholar
- 2.UNAIDS, 2010 Report on the global AIDS epidemic. The Joint United Nations Programme on HIV/AIDS (UNAIDS); 2010.Google Scholar
- 5.WHO, Progress report 2011: global HIV/AIDS response. WHO, UNICEF, UNAIDS; 2011.Google Scholar
- 6.UNAIDS, Report on the global AIDS epidemic, 2010. The Joint United Nations Programme on HIV/AIDS (UNAIDS), 2010.Google Scholar
- 7.UNICEF. Opportunity in crisis: preventing HIV from early adolescence to young adulthood. New York: United Nations Children's Fund; 2011.Google Scholar
- 13.Progress on global access to HIV antiretroviral therapy: a report on "3 by 5" and beyond. World Health Organization; 2006.Google Scholar
- 16.San-Andres FJ, et al. Incidence of acquired immunodeficiency syndrome-associated opportunistic diseases and the effect of treatment on a cohort of 1115 patients infected with human immunodeficiency virus, 1989–1997. Clin Infect Dis Off Publ Infect Dis Soc Am. 2003;36(9):1177–85.CrossRefGoogle Scholar
- 19.Tam, L.W., et al., The relationship between resistance and adherence in drug-naive individuals initiating HAART is specific to individual drug classes. J Acquir Immune Defic Syndr. 2008. 49:266–71Google Scholar
- 28.Muller, A.D., et al., Electronic measurement of adherence to pediatric antiretroviral therapy in South Africa. Pediatr Infect Dis J. 2008;27:257–62.Google Scholar
- 30.Adherence to long-term therapies: evidence for action. Geneva, Switzerland: World Health Organization; 2003. pp. 95–107.Google Scholar
- 41.Sidani S, et al. Cultural adaptation and translation of measures: an integrated method. Res Nurs Heal. 2010;33(2):133–43.Google Scholar
- 42.Weech-Maldonado R, et al. Cross-cultural adaptation of survey instruments: the CAHPS experience. In: Seventh Conference on Health Survey Research Methods. Williamsburg, Virginia: Department of Health and Human Services, Centers for Disease Control and Prevention; 2001. p. 75–81.Google Scholar
- 43.Willis GB. Cognitive interviewing: a tool for improving questionnaire design. Thousand Oaks: Sage; 2005.Google Scholar
- 45.Dillman DA. Mail and internet surveys: the tailored design method. 2nd ed. New York: Wiley; 2000.Google Scholar
- 47.Fowler FJ. Improving survey questions: design and evaluation. Appl Soc Res Methods Ser. Vol. 38. 1995, Thousand Oaks, CA: Sage.Google Scholar
- 48.Forsyth BH, Lessler JT, et al. Cognitive laboratory methods: a taxonomy. In: Biemer PN, editor. Measurement errors in surveys. New York: Wiley; 1991. p. 393–418.Google Scholar
- 50.Lee J. Conducting cognitive interviews in cross-national settings. Assessment, 2012 Feb 11. doi:10.1177/1073191112436671.
- 53.Einterz RM, et al. Partnerships in international health. The Indiana University–Moi University experience. Infect Dis Clin N Am. 1995;9(2):453–5.Google Scholar
- 64.Hambleton RK, Merenda PF, Spielberger CD, editors. Adapting educational and psychological tests for cross-cultural assessment. Mahwah: Erlbaum; 2005.Google Scholar
- 65.Willis GB. Cognitive interviewing: A “how to” guide. 1999 [cited 2012 March 1, 2012]; Available from: http://www.metagora.org/training/encyclopedia/interview.pdf.
- 67.Vreeman RC, et al. “I can't be free to tell them”: a qualitative assessment of barriers to antiretroviral therapy adherence among adolescents in Western Kenya: 5th IAS Conference on HIV Pathogenesis and Treatment: Abstract no. WEPEB275.Google Scholar
- 68.Williams AB, et al. A proposal for quality standards for measuring medication adherence in research. AIDS Behav. 2012. doi:10.1007/s10461-012-0172-7.
- 70.Hall ET. Context and meaning. In: Samovar LA, Porter RE, editors. Intercultural communication: a reader. Belmont: Wadsworth; 2000. p. 34–43.Google Scholar
- 72.Adair CE, et al. Cognitive interviewing methods for questionnaire pre-testing in homeless persons with mental disorders. J Urban Health Bull New York Acad Med. 2012;89(1):36–52.Google Scholar