“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

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.

Quality of life among people living with HIV aged 50 years and over in Australia: Identifying opportunities to support better ageing

“…Additionally, we found evidence that one in five participants experienced recent food insecurity, which was strongly associated with a lower quality of life. These findings are consistent with previous research describing economic insecurity and the ability to meet basic needs among older people living with HIV [41, 57, 58] and indicate that existing social supports do not adequately support the financial needs within this population. Although numerous challenges related to addressing economic and financial hardships exist, many of the stressors experienced by older people living with HIV could be addressed by increasing awareness and supporting access to existing services, including as financial support for people with low incomes and aged care services.…”

“…These findings have important implications because, for the first time, a significant cohort of people living with HIV will need to access aged care services, either in the home or through aged care facilities. Anxieties among people living with HIV related to accessing non-judgmental and high-quality HIV care in aged care facilities with limited experience of people living with HIV have been previously identified through qualitative studies with older people living with HIV in Australia and Canada [16,41]. People living with HIV commonly report experiences of stigma in a number of settings [42][43][44], with fear of HIV transmission a key driver of HIV stigma in healthcare and workplace settings [42,43].…”

Health-related quality of life and associated factors among people living with HIV/AIDS in Sichuan, China: A cross-sectional study

“…Age was an independent risk factor that was significantly associated with the physical health of PLWH, which was similar to other studies ( 69 , 70 ) but different from George's research ( 21 ). It may be that older PLWH experience a greater burden of age-related comorbidities, poorer social determinants of health and even ageism ( 71 ). Murzin's team ( 71 ) showed that ageism transcended multiple interactions and environments from dating to healthcare and community services to society because of social determinants, health provider issues and structural challenges.…”

“…It may be that older PLWH experience a greater burden of age-related comorbidities, poorer social determinants of health and even ageism ( 71 ). Murzin's team ( 71 ) showed that ageism transcended multiple interactions and environments from dating to healthcare and community services to society because of social determinants, health provider issues and structural challenges. Therefore, we suggest that the government should pay more attention to older people, especially in the advent of an aging society.…”

Growing older with HIV in the Treat‐All Era

“…In their papers, Murzin et al. [ 28 ] and Reynolds et al. [ 29 ] use qualitative methods to better understand the health needs of older PWH in marginalized and rural communities from two diverse economies: Canada and Uganda.…”