Objectives To examine the episodic disability experiences of older women living with HIV over time.
Design Qualitative longitudinal study, conducting semistructured in-depth interviews on four occasions over a 20-month time frame. Inductive thematic analyses were conducted cross-sectionally and longitudinally.
Setting Participants were recruited from HIV community organisations in Canada.
Participants 10 women aged 50 years or older living with HIV for more than 6 years.
Results Two major themes related to the episodic nature of the women’s disability. Women were living with multiple and complex sources of uncertainty over time including: unpredictable health challenges, worrying about cognition, unreliable weather, fearing stigma and the effects of disclosure, maintaining housing and adequate finances, and fulfilling gendered and family roles. Women describe strategies to deal with uncertainty over time including withdrawing and limiting activities and participation and engaging in meaningful activities.
Conclusions This longitudinal study highlighted the disabling effects of HIV over time in which unpredictable fluctuations in illness and health resulted in uncertainty and worrying about the future. Environmental factors, such as stigma and weather, may put older women living with HIV at a greater risk for social isolation. Strategies to promote dealing with uncertainty and building resilience are warranted.
- episodic disability
- longitudinal analysis
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Contributors PS, KKO, SN and LL developed the research question and designed the study. NG collected the data. PS, KKO, SN, LL, LB and NG participated in the data analysis. PS drafted the manuscript. KKO, SN, LL, LB and NG contributed to the critical revision and redrafting of the manuscript.
Funding This work was supported by the Canadian Institutes of Health Research (CIHR) under grant HHP 131556. KKO and SN are supported by CIHR New Investigator Awards.
Competing interests None declared.
Patient consent Obtained.
Ethics approval This research was approved by Research Ethics Boards of McMaster University and University of Toronto.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.
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