“It’s a Hidden Issue”: Exploring the experiences of women with HIV-associated neurocognitive challenges using a disability framework

Abstract

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.

Implications for Rehabilitation

• For people who can access treatment, human immunodeficiency virus (HIV) is experienced as a chronic illness.

• HIV-associated neurocognitive disorder is one of the comorbidities with a high-prevalence rate that can impact quality of life and everyday functioning.

• This study reveals that impairments experienced by women with HIV-associated neurocognitive challenges are linked with a range of participation restrictions.

• These restrictions need addressing through rehabilitation.

Keywords::

• HIV
• ICF
• women
• participation
• neurocognitive

Acknowledgements

The authors acknowledge Evelyne Durocher for her advice in developing this study, Dr. Teri Sota and Paul MacPhee for their support during recruitment and data collection, and Rochelle Burgess for her support with data collection. This research was completed in partial fulfilment of the requirements of an MSc(PT) degree at the University of Toronto.

Declaration of Interest: This project was funded by the University of Toronto Faculty of Medicine’s Dean’s Fund, and the University of Toronto Department of Physical Therapy.