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What is the lived experience of loneliness in older men living with HIV?
A qualitative analysis to guide service development
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Download the PDF here
10th International Workshop on HIV and Aging, October 10-11, 2019, New York
Reported by Jules Levin
Amanda Austin-Keiller, David Lessard, Marianne Harris,
Lesley Fellows, Melissa Park, Nancy Mayo, Marie-Josée Brouillette
10th International Workshop on HIV & Aging 2019
New York, USA
October 10-11, 2019
Oral abstract #15
program abstract
What is the lived experience of loneliness in older men living with HIV? A qualitative analysis to guide service development
Austin-Keiller A1, Lessard D2, Harris M3, Fellows L4, Park M2, Mayo N5, Brouillette M1
1Department of Psychiatry, McGill University, Montreal, Canada, 2Department of Family Medicine, McGill University, Montreal, Canada, 3BC Centre for Excellence in HIV/AIDS, University of British Columbia, Vancouver, Canada, 4Montreal Neurological Institute, Montreal, Canada, 5Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, Canada
Background: Loneliness, a known predictor of poor health and early mortality, is found at higher rates among older people living with HIV. While there are many services available to people living with HIV, services to help overcome loneliness is reported to be the greatest area of unmet need for this population. Loneliness is a complex issue experienced differently across gender, cultural, and age groups. However, to develop focused and effective services, we need to discover the experience of loneliness in older people living with HIV and understand the associated problems from their perspective. Caucasian men are a major component of the HIV community; therefore, this study aims to understand the lived experience of loneliness in older Caucasian men living with HIV in the Montreal area.
Methods: We followed a qualitative design to access and compare distinct lived experiences of loneliness among older men living with HIV. First, participants were selected using a theoretical sampling method, which aims to recruit individuals based on theoretical relevance, rather than representativeness of a given population. Thus, for comparison purposes, from the Canadian Positive Brain Health Now study Montreal participant pool, we selected men who answered, 'quite often' (n=6) and 'almost never' (n=4) to the question "do you find yourself feeling lonely, quite often, sometimes or almost never?". Then, the first author conducted one-to-one, face-to-face, semi-structured, audio-recorded interviews with participants until theoretical saturation was reached (total=10), meaning no novel information was obtained in the final interview. Audio-recordings were transcribed verbatim and we conducted an inductive thematic analysis using MaxQDA to identify major emerging themes.
Results: The participants defined their loneliness as an overall lack of intimacy due to the absence of a romantic or platonic friend. Their experiences were generally centered on three main interacting themes: 1) participants often referred to 'a missing other': they usually attributed the absence of an intimate other to the loss of someone who had previously filled this role; death or stigma surrounding HIV were frequently the underlying causes for the loss; 2) they also mentioned 'a deceiving search for intimacy': participants tried to find friends or partners using online dating or dating apps, but more often than not, they found "hook-ups" which did not remedy their loneliness; and 3) they also spoke about 'a fear of rejection': participants expressed concerns about the possibility of being rejected by a potential friend or partner, due to their HIV status, age or their physical appearance, especially if they have lipodystrophy.
Conclusion:Our qualitative study identified three main themes indicating that participants are concerned about an absence of intimacy, as well as the difficulties and fear they experience when trying to restore intimacy in their lives. Service development should focus interventions on the barriers and facilitators associated with creating meaningful relationships with partners and/or friends. This may include social and networking events, coaching on HIV status disclosure and relationship building, as well as strategies to cope with past trauma and overcome fears.
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