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“I’m Just Forgetting and I Don’t Know Why”:...
Journal article

“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.

Authors

Terpstra AR; Worthington C; Ibáñez-Carrasco F; O’Brien KK; Yamamoto A; Carusone SC; Turje RB; McDougall P; Granger W; Thompson V

Journal

Qualitative Health Research, Vol. 28, No. 6, pp. 859–872

Publisher

SAGE Publications

Publication Date

May 1, 2018

DOI

10.1177/1049732318761364

ISSN

1049-7323

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