Cognitive interviewing to assess and adapt three measures of mental health symptoms among people living with HIV in Rakai, Uganda: the Thinking a Lot Questionnaire, the Patient Health Questionnaire 9 (PHQ-9), and the Hopkins Symptoms Checklist (HSCL)

TL;DR

Researchers in Uganda tested how well three mental health questionnaires work for people living with HIV, finding that one performed poorly and needed adaptation.

Contribution

The study provides insights into adapting mental health screening tools for cultural and clinical relevance in HIV populations in Uganda.

Findings

The HSCL and Thinking a Lot Questionnaire were generally well understood with minor adjustments.

The PHQ-9 had issues with clarity and local applicability, especially among HIV-positive individuals.

Cultural idioms of distress were incorporated into two of the questionnaires.

Abstract

Mental health is conceptualized differently across cultures, making cross-cultural validation of screening tools critical. In Uganda, we used cognitive interviewing to assess and adapt three scales for measuring psychological distress: the Thinking a Lot Questionnaire, the Patient Health Questionnaire 9 (PHQ-9), and the Hopkins Symptoms Checklist (HSCL). We recruited 12 people living with HIV from the Rakai Community Cohort Study (RCCS) and interviewed seven potential users of the scales (four RCCS survey interviewers and three local health workers). Data were analyzed systematically using a team-based matrix approach. The HSCL was generally well understood, with minor clarifications needed. The Thinking a Lot Questionnaire was also well understood, though differences between “how much” and “how often” required specificity. Both included local idioms of distress from prior adaptations. The PHQ-9 performed less well, with many questions interpreted variably or showing unclear local applicability, especially among people living with HIV. For example, questions about trouble concentrating were misunderstood, focusing on examples like newspapers rather than the broader issue of concentration. Future research should explore the validity and utility of commonly used instruments as mental health research expands in Africa.

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