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)

July 10, 2024 by
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)
Aber Maurine
Nora S. West1; Lydia P. Namuganga2; Dauda Isabirye3; Rosette Nakubulwa3; William Ddaaki3; Neema Nakyanjo3; Fred Nalugoda3; Sarah M. Murray4; Caitlin E. Kennedy4

Affiliations:

1University of California San Francisco
2Johns Hopkins University
3Rakai Health Sciences Program
4Johns Hopkins Bloomberg School of Public Health

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 clarications needed. The Thinking a Lot Questionnaire was also well understood, though differences between “how much” and “how often” required specicity. 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.

Impact Statement

This research highlights the importance of culturally relevant mental health screening tools for people living with HIV in Uganda. By adapting and validating the Thinking a Lot Questionnaire, the Patient Health Questionnaire 9 (PHQ-9), and the Hopkins Symptoms Checklist (HSCL) through cognitive interviews, we aim to improve mental health assessment in a region where psychological distress is often overlooked. The refined tools will enable more accurate identification of psychological distress locally, leading to better-targeted interventions and support for people living with HIV. This can enhance treatment adherence, reduce transmission rates, and improve overall health outcomes in Uganda and similar settings. Regionally, this research serves as a model for other African countries facing similar mental health assessment challenges. By emphasizing cultural relevance and local idioms of distress, different regions can adapt their mental health tools to be effective and meaningful for diverse populations. Internationally, this study contributes to the broader understanding of cross-cultural mental health assessment. It underscores the need to validate mental health instruments beyond statistical measures, considering local context and language nuances. This approach can inspire global health organizations and researchers to adopt more inclusive methods when developing and implementing mental health tools in various cultural settings. Ultimately, this research promotes a more nuanced and effective approach to mental health care for marginalized populations, fostering equity in health care access and quality worldwide. By ensuring that mental health screening tools are culturally and contextually appropriate, we pave the way for better mental health outcomes for millions of people living with infectious and chronic illnesses globally.

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