Perspectives on Continuing Care, From Home Care to Long-Term Care, for Older People Living With HIV: A Cross-Sectional Study

Abstract

Background and Aims

Older (≥ 50 years) persons living with human immunodeficiency virus (PLWH) comprise the majority of individuals receiving HIV care in high-income countries. PLWH experience the challenges of aging at earlier ages and accelerated rates, compared to people without HIV. Older PLWH who may benefit from more support may hesitate due to fear of stigma, discrimination, or past experiences.

Methods

We assessed the views of older PLWH through an online survey. We sought participants' views, experiences, knowledge and preferences for delivery of continuing care support in Alberta, Canada. Participants were invited during clinic visits at the Southern Alberta Clinic in Calgary, Canada.

Results

A total of 316 participants completed the survey. The mean age was 61 years (standard deviation ± 8) and 83.5% (n = 264) were men. Ten percent of participants (n = 32) currently receive help with activities of daily living, 70% of which was provided by family/friends. Nine percent expressed concern with receiving help, including financial (54%), loss of independence (31%), and privacy concerns (31%). Nearly 47% expressed concern about healthcare providers' knowledge of HIV, 63% expressed concern about their medical information being kept confidential, and 64% expressed concern about other residents learning of their HIV diagnosis.

Conclusions

Despite a need, many older PLWH are hesitant to accept home care or move into supportive, facility-based living. This leaves a potential void in the necessary provision of care. This must be addressed to ensure equity, diversity, and inclusion, and to remove barriers in accessing health and social supports. The solutions to this urgent need lie with those with lived experience who can inform healthcare providers and policy-makers. To start, healthcare providers and policymakers must educate staff about the ongoing stigma and discrimination experienced by older PLWH and demonstrate to patients the value placed on patient privacy and confidentiality.

Impact Statement

We certify that this work is novel clinical research that provides insight into the values and preferences of older people living with HIV regarding continuing care (from home care to supportive living and long-term care). This work is the foundation for creating meaningful, structural changes to how continuing care is provided to older people living with HIV, an underrepresented and equity-deserving group. Despite a need, many older PLWH are hesitant to accept home care or move into supportive, facility-based living. This leaves a potential void in the necessary provision of care. This must be addressed to ensure equity, diversity, and inclusion, and to remove barriers in accessing health and social supports. To start, healthcare providers and policymakers must educate staff about the ongoing stigma and discrimination experienced by older PLWH and demonstrate to patients the value placed on patient privacy and confidentiality.