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"We can hardly even do it nowadays. So, what's going to happen in 5 years from now, 10 years from now?" The health and community care and support needs and preferences of older people living with HIV in Ontario, Canada: a qualitative study
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Older PLWH require care and support that accounts for a different life course trajectory than the ageing general population consequent to the impact of trauma, intersecting forms of stigma and uncertainty on their mental health (and I would add higher rates of comorbidities with earlier onset disproportionately affecting African-Americans & Latinos in the USA, Jules Levin). Unmet health and social needs and limited control over the availability and accessibility of ageing-related care and support due to resource constraints or reduced capacity for self-advocacy results in anxiety about the future among older PLWH, despite their well-developed coping strategies and experience navigating systems of care. These study findings will inform the development of the first national needs assessment of older PLWH in Canada.
Lived experiences shape ageing care and support needs and preferences
Three intersecting themes emerged in our analysis-trauma, stigma and uncertainty-and their cumulative burden affected participants' present-day and future care and support needs, and the likelihood these are, or will be, met. Traumatic experiences across the life course often resulted in the loss of financial security and social and caregiving support. Experiences of HIV stigma and ageism increased isolation and reliance on formal services, and amplified concerns about discrimination in care settings. Current and common anxiety about meeting basic needs led to concerns about future resources.
29 September 2022
PANACHE ON was a qualitative community-based participatory research study. In-person focus groups using a semi-structured interview guide were co-facilitated by pairs of trained older PLWH from July to October 2019.
A total of 73 PLWH participated, 66% identified as men. The mean age was 64 years (range 55-77) and median time living with HIV was 23 years (range 2-37). The current and anticipated needs of older PLWH, many of which were only partially met, included necessities such as food and housing, mobility and sensory aids, in-home support, social and emotional support, transportation and information. Three experiences-trauma, stigma and uncertainty-intersected in the lives of many of our participants, shaping their needs for care and support, and impacting the ease with which these needs were met.
Abstract
Introduction
The population of people living with HIV (PLWH) is ageing consequent to effective treatment and a steady stream of new diagnoses among older adults. PLWH experience a greater burden of age-related comorbidities and poorer social determinants of health compared to their HIV-negative peers, yet comprehensive requisites for care and support as PLWH age remain poorly understood. Preferences And Needs for Ageing Care among HIV-positive Elderly people in Ontario, Canada (PANACHE ON), explored the health and community care and social support needs and preferences of a diverse group of older PLWH (age 60+) and described life course experiences among older PLWH that shape these needs and preferences and whether they are met.
Methods
PANACHE ON was a qualitative community-based participatory research study. In-person focus groups using a semi-structured interview guide were co-facilitated by pairs of trained older PLWH from July to October 2019. Purposive sampling bolstered the inclusion of communities disproportionately affected by HIV in Ontario. Descriptive analysis was used to summarize demographic data; participatory data analysis was conducted by a subset of the research team, with transcripts double-coded and analysed using NVIVO 12 Plus.
Results
A total of 73 PLWH participated, 66% identified as men. The mean age was 64 years (range 55-77) and median time living with HIV was 23 years (range 2-37). The current and anticipated needs of older PLWH, many of which were only partially met, included necessities such as food and housing, mobility and sensory aids, in-home support, social and emotional support, transportation and information. Three experiences-trauma, stigma and uncertainty-intersected in the lives of many of our participants, shaping their needs for care and support, and impacting the ease with which these needs were met.
Conclusions
Unmet health and social needs and limited control over the availability and accessibility of ageing-related care and support due to resource constraints or reduced capacity for self-advocacy results in anxiety about the future among older PLWH, despite their well-developed coping strategies and experience navigating systems of care. These study findings will inform the development of the first national needs assessment of older PLWH in Canada.
We found that the basic needs of older PLWH, including safe, affordable housing and high-quality sufficient food, are only partially met by the existing social service infrastructure; previous studies have reported similar findings [9-11, 14, 38]. Government subsidies for vision and hearing aids are inadequate resulting in older PLWH having to pay out-of-pocket or go without. Older PLWH also rely on improvised self-management strategies to deal with memory changes since services in this domain are largely non-existent, especially outside urban centres [33]. Social and practical needs are met informally by family and friends in some cases, and predominantly by CBHOs among those with no or small social networks, but there is a lack of tailored programming for older PLWH [17, 28, 29]. The needs of older PLWH documented over the last decade continue to go unmet and are now much more pressing due to the growing proportion of PLWH60+.
The needs and preferences of our older PLWH are shaped by past and present experiences of trauma, stigma and uncertainty, a life course triad also described by other researchers [14, 15, 17, 19, 20, 31]. As the majority were diagnosed with HIV in their prime working and relationship-building years and currently rely primarily on government income supports, the adequacy of financial and social capital to live in comfort and dignity is a significant source of uncertainty [17, 18, 31]. Despite a strong preference for ageing in place, there is much unknown about how this will be operationalized.
The care and support needs raised in this study reflect those identified by community-dwelling older people with other chronic conditions or multimorbidity [46, 47]. Both experience uncertainty about the future, sensory impairment, difficulties with iADLs, social isolation and loneliness, and challenges navigating uncoordinated services; in response, they employ self-management and coping strategies, turn to informal caregivers and peers for support, and seek technological aids for mobility, vision and personal safety [46].
Older PLWH require care and support that accounts for a different life course trajectory than the ageing general population consequent to the impact of trauma, intersecting forms of stigma and uncertainty on their mental health [15, 36, 48-50]. The practical realities resulting from this triad of lived experiences, including their potential to shape the needs of older PLWH and affect whether these needs are fully met, have received less attention. A significant source of uncertainty is how needs will be met if participants become unable to live independently, as previously documented [18]. Many reject long-term care or seniors' housing for fear of HIV stigma and/or homophobia [9, 51, 52]. Although we did not hear many examples, the literature documents experiences of discrimination in healthcare and other institutional settings as common among older PLWH [14, 53].
Furthermore, Koehn et al. describe that, without careful planning, communal living environments can trigger stress among PLWH with trauma histories [54]. Based on their past experiences, residential seniors' care is not viewed as being safe by older PLWH.
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