Development of cognitive remediation interventions for people living with HIV in South Africa: participant experiences of adapted CogSMART and BrainHQ

Introduction: Previous studies suggest that cognitive remediation training (CRT) programs can help address neurocognitive impairment (NCI) and associated functional challenges in multiple populations. However, no such program has been developed for persons living with HIV in low- or middle-income countries (LMICs). Methods: In this qualitative study, we aimed to describe how South African people living with HIV perceived and experienced the local adaptations of two US-designed CRT programs. We recruited 34 people living with HIV (27 women; age 30-50 years) from community healthcare clinics and a non-governmental organization. All had Xhosa as their home language, resided in low-income communities, and experienced at least mild NCI. Over a 5-week intervention period, participants completed ten 2-h Cognitive Symptom Management and Rehabilitation Therapy (CogSMART-SA) group sessions and 20 self-guided 30-min BrainHQ Results: Most participants agreed the CRT programs were enjoyable, improved their mood, and assisted memory performance. They reported that the interventions helped address long-standing challenges (e.g., social exclusion, internalized stigma, and difficulty managing HIV). Many specified that the interventions helped improve self-care (e.g., via physical exercise and stress management techniques, and by ensuring medication adherence) and indicated a sense of increased agency and empowerment in a stigmatizing society. Moreover, they perceived the interactive, group-based aspects of the interventions as a source of social support. Participants described a collaborative learning space that extended into the community, and reported that they maintained friendships post-study. Conclusion: The findings provide support for using societal and cultural knowledge in creating effective community-based interventions. Using a collaborative approach to co-design the program offered participants opportunities to reflect on identity beyond the intervention and in relation to broader community positionality. This study highlights the value of including participants as co-contributors to the development of CRT programs that are linguistically, culturally, and situationally appropriate for LMIC contexts. Clinical trial registration: https://clinicaltrials.gov/study/NCT06466642, NCT06466642.