"It's a hidden issue": exploring the experiences of women with HIV-associated neurocognitive challenges using a disability framework.

PURPOSE

To use the World Health Organization's International Classification of Functioning, Disability and Health (ICF) to explore the experiences of women living with self-identified HIV-associated neurocognitive challenges.

METHOD

This interpretive, qualitative study involved key informant interviews with 16 women with self-identified HIV-associated neurocognitive challenges. Data were collected through 60-90 min, in-depth, semi-structured interviews. Thematic analysis was performed using an inductive approach. Theoretical analysis then used the ICF to reconceptualize the data using a disability lens.

RESULTS

Participants perceived impairments (e.g. memory loss, difficulty multi-tasking) and participation restrictions (e.g. parenting, work roles) resulting from their neurocognitive challenges as having a larger impact on their daily lives than activity limitations (e.g. difficulty with chores). Participants held contrasting views about parenting: women with children drew strength from parenting whereas women without children worried that parenting could compromise their health. Participation in work and volunteering roles was viewed as integral to managing neurocognitive challenges and health overall.

CONCLUSIONS

Conceptualizing neurocognitive challenges through a disability lens focuses attention on how impairments interact with other realities in these women's lives. This exploratory study reveals the need for future research exploring perceptions among people living with HIV-associated neurocognitive challenges with attention to aging and among other vulnerable groups.