Cognitive interviewing for understanding and adaptation of mental health screening instruments among people living with HIV in rakai, Uganda: the thinking a lot questionnaire, the patient health questionnaire 9 (PHQ-9), and the hopkins symptoms check

Mental health is conceptualized differently across cultures, making exploration of the understandability of screening tools for the purpose of adaptation critical. In Uganda, we used cognitive interviewing to understand comprehension of and make adaptations to three scales for measuring psychological distress: the Thinking Too Much (TTM) 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 TTM 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, and both researchers and public health programmers should consider the strengths and limitations of screening instruments in their setting. • Adapts mental health tools for cultural relevance in Uganda. • Enables accurate distress screening for people living with HIV. • Enhances treatment adherence and health outcomes locally. • Serves as a model for mental health tool adaptation in Africa. • Promotes global equity in culturally sensitive mental health care.