Cognitive interviewing for cross-cultural adaptation of pediatric antiretroviral therapy adherence measurement items.

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.

Factors sustaining pediatric adherence to antiretroviral therapy in western Kenya.

Antiretroviral therapy (ART) requires nearly perfect adherence to be effective. Although 90% of HIV-infected children live in Africa, there are limited data on pediatric adherence from this multicultural continent.We conducted a qualitative study to identify key factors contributing to pediatric ART adherence. Ten focus group discussions (N = 85) and 35 individual interviews were conducted with parents and guardians of HIV-infected children receiving ART in western Kenya. Interviews covered multiple aspects of the experience of having children take ART and factors that inhibited or facilitated medication adherence. Constant comparison, progressive coding, and triangulation methods were used to arrive at a culturally contextualized, conceptual model for pediatric ART adherence derived from the descriptions of the lived experience in this resource-limited setting. Child care, including sustained ART adherence, depends on interacting cultural and environmental determinants at the levels of the individual child, parent/caregiver, household, community, health care system, and society.

The perceived impact of disclosure of pediatric HIV status on pediatric antiretroviral therapy adherence, child well-being, and social relationships in a resource-limited setting.

In resource-limited settings, beliefs about disclosing a child's HIV status and the subsequent impacts of disclosure have not been well studied. We sought to describe how parents and guardians of HIV-infected children view the impact of disclosing a child's HIV status, particularly for children's antiretroviral therapy (ART) adherence. A qualitative study was conducted using involving focus groups and interviews with parents and guardians of HIV-infected children receiving ART in western Kenya. Interviews covered multiple aspects of the experience of having children take medicines. Transcribed interview dialogues were coded for analysis. Data were collected from 120 parents and guardians caring for children 0­14 years (mean 6.8 years, standard deviation [SD] 6.4); 118 of 120 had not told the children they had HIV. Children's caregivers (parents and guardians) described their views on disclosure to children and to others, including how this information-sharing impacted pediatric ART adherence, children's well-being, and their social relationships. Caregivers believed that disclosure might have benefits such as improved ART adherence, especially for older children, and better engagement of a helping social network. They also feared, however, that disclosure might have both negative psychological effects for children and negative social effects for their families, including discrimination. In western Kenya, caregivers' views on the risks and benefits to disclosing children's HIV status emerged a key theme related to a family's experience with HIV medications, even for families who had not disclosed the child's status. Assessing caregivers' views of disclosure is important to understanding and monitoring pediatric ART.