“I’m Just Forgetting and I Don’t Know Why”: Exploring How People Living With HIV-Associated Neurocognitive Disorder View, Manage, and Obtain Support for Their Cognitive Difficulties

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Abstract

HIV-associated neurocognitive disorder (HAND) is common, but the lived experience of HAND is not well-understood. In this descriptive qualitative study, we explored how adults with HAND view, manage, and obtain support for cognitive difficulties. We interviewed 25 participants (20% female; median age = 51 years) who were diagnosed with HAND using neuropsychological assessment and a clinical interview. Semistructured interviews, co-developed with community members living with HIV, focused on how cognitive difficulties manifested and progressed, impacted well-being, and were discussed with others. We analyzed interview transcripts using a team-based, thematic approach. Participants described concentration, memory, and multitasking difficulties that fluctuated over time, as well as potential risk factors, management strategies, and psychosocial consequences. They reported they seldom discussed cognitive impairment with health care professionals, and that receiving a HAND diagnosis was validating, informative, yet somewhat disconcerting. Conversations between health care professionals and people living with HIV about HAND may provide opportunities for education, assessment, and support.

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