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.
Cognitive impairment is a significant health issue for people aging with HIV/AIDS. Cognitive challenges can include forgetfulness, trouble concentrating, and increasing struggles to learn new skills, all of which contribute to poorer mental health and decreased quality of life. Although there is no specific drug therapy that can reverse the brain impairment, group therapies may help people aging with HIV and cognitive challenges to better cope with their symptoms when combined with their usual medical treatment and follow-up. This community-based study will involve peer-led focus groups to discuss cognitive remediation group therapy – a combination of mindfulness-based stress reduction and brain training activities tested in a pilot randomized, controlled trial – as an in-person intervention for people aging with HIV in 2019. Via a brief demographic survey and technology-mediated focus groups ( n = 40) in Ontario and Saskatchewan, we will determine how the intervention could be adapted in an online or hybrid format considering the ongoing COVID-19 pandemic. Content analysis will be employed whereby a team of independent coders will code the focus group transcripts in line with the co-design framework and “Double Diamond” model of developing interventions, including intervention structure, content, and mode of delivery. Given the aging of the HIV population in Canada, increasing support will be required in addition to medical care to improve quality of life, and proactively address concerns about cognition. This protocol provides a roadmap for adapting in-person psychosocial interventions using community-based and technology-mediated methods.
Cognitive impairment is a common comorbidity among individuals aging with HIV, which can be an extreme source of stress and anxiety for many. Psychosocial interventions have the potential to alleviate symptoms associated with cognitive impairment and help improve the quality of life of people with HIV as they continue to age; these interventions are in the infancy of development and require further testing via clinical trials. The slow development of interventions may be partially attributed to a common trend of requiring a formal HIV-associated neurocognitive disorder diagnosis to qualify for psychosocial clinical trials. HIV-associated neurocognitive disorder is diagnosed through intensive, time-consuming tests, and still many cases of HIV-associated neurocognitive disorder remain undiagnosed, misdiagnosed, or misclassified due to the limitations of the assessment process. This commentary suggests an alternate method of screening for cognitive impairments through the use of a brief, low-barrier assessment, alongside validity considerations. Such alternate screening may improve enrollment and completion rates in psychosocial clinical trials for people aging with HIV and cognitive impairment, by removing the burden of extensive testing that is commonly associated with an HIV-associated neurocognitive disorder diagnosis from clinical trial eligibility, while still providing valuable insight into individuals’ cognitive functioning.
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