“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

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.

Neurocognitive impairment in treatment-experienced adults living with HIV attending primary care clinics in Zimbabwe

“…Attention and memory were the most impaired domains. This is consistent with data from a qualitative study where HIV-positive patients reported increased difficulties with attention and memory affecting their day to day activities [46,47]. Deficits in these domains also affect medication adherence and compliance with clinic appointments [47].…”

Quality of life in people living with HIV-associated neurocognitive disorder: A scoping review study

“…In studies which did Caucasian/white participants comprised 45.8%, Black/African/African-American/Caribbean participants representing 41.2%, and Hispanic participants comprising 8.2% of the sample. All but one study [49] gave information pertaining to the ARV status of participants; four studies stated that all participants were on stable cART [32,38] or HAART [27,30], and across the remaining studies 86.8% of participants were on cART or HAART. One study was included in…”

“…this review [49], despite not providing ARV status information (likely due to its qualitative methodology and that it was not deemed relevant for the objectives of the research) however, contact was made with the study authors who confirmed all participants had access to cART.…”

Protocol for a pilot randomised controlled trial evaluating feasibility and acceptability of cognitive remediation group therapy compared with mutual aid group therapy for people ageing with HIV-associated neurocognitive disorder (HAND) in Toronto, Canada

“…There has been little research conducted that provides people living with HAND the opportunity to interact with one another in a confidential group setting. It is possible that this group experience could be helpful for people living with HAND, as exploratory research has identified a dual stigma associated with the condition 11 17. The dual stigma is people feel that they cannot speak about HAND to their HIV-positive community due to dementia stigma, nor could they discuss it with HIV-negative friends and service providers who are familiar with cognitive impairment due to HIV stigma.…”

“…With the earlier age of impairment and syndemic factors associated with HIV, HAND may be a condition in need of specific psychosocial intervention distinct from what is currently being tested in geriatric adults with dementia 12 14. Yet despite exploratory research on the unique challenges of HAND and a stated community need,11 12 15–17 HAND intervention research in the era of modern cART is limited and the optimal intervention is unclear 13 14…”