“They didn't think we'd live this long”: A qualitative exploration of older adults living with HIV perspectives on geriatric care in Ontario

Abstract

Introduction

Advances in human immunodeficiency virus (HIV) care have increased life expectancy, leading to more older adults living with HIV. This study examines older adults' perspectives on geriatric healthcare needs.

Methods

A community‐based qualitative study in Ontario, Canada, recruited some adults aged 50+ years living with HIV through quota and purposive sampling. Quota sampling was used to include individuals of different ages, genders and ethno‐racial backgrounds to capture a range of experiences. Data were collected via semi‐structured interviews and focus groups, analyzed using the Qualitative Analysis Guide of Leuven.

Results

Participants included interviewees (n = 14) and focus group attendees (n = 12). Four themes emerged: (1) lack of knowledge and access to geriatric care, highlighting service challenges; (2) healthcare providers' understanding of HIV and ageing, with stigma concerns; (3) role of social support networks for emotional/practical support; and (4) requirements for improved geriatric care, advocating provider education and greater social care access.

Conclusions

Gaps in geriatric care for older adults with HIV highlight stigma, access issues and the need for education, virtual care and tailored, inclusive healthcare solutions.

INTRODUCTION

Individuals with human immunodeficiency virus (HIV) are living longer than in previous decades, largely due to improved access to testing, diagnosis, healthcare services and effective antiretroviral treatments [1, 2]. The population ageing with HIV consists of: (1) Individuals over 50 years of age and newly diagnosed with HIV, and (2) those who have lived with HIV and aged into their 50s or greater [3]. By 2025, approximately one in six adults living with HIV in Canada will be aged 50 years and older [4]. As more adults with HIV reach older age, it is essential that geriatric healthcare services are responsive to their unique needs and experiences, ensuring equitable, stigma‐free and person‐centred care [5, 6]. An important consideration in the care of older adults living with HIV is the impact of long‐term antiretroviral therapy (ART) on the ageing process. Prolonged ART use has been associated with an increased risk of age‐related comorbidities, including cardiovascular disease, osteoporosis and neurocognitive decline [7, 8]. As a result, people with HIV who have been on treatment for many years may require more complex, multidisciplinary care to address both HIV management and ageing‐related health concerns [9].

Geriatric care addresses age‐related conditions, but HIV adds unique complexities [10, 11]. Older adults living with HIV may experience a higher prevalence of comorbidities [12, 13, 14], polypharmacy [15], social isolation [1, 16, 17] and mental health challenges [6, 18, 19] compared with their HIV‐negative peers. Moreover, they may encounter unique obstacles to accessing geriatric healthcare services [20] due to medical mistrust and stigma from healthcare providers [21, 22, 23]. Mistrust among older adults with HIV can reduce their confidence in care, causing them to avoid or hesitate to seek healthcare services [22]. Some healthcare providers may not have extensive HIV knowledge, particularly concerning the impact of social determinants of health [24, 25, 26]. As such, exploring how to best deliver geriatric care to this population requires consideration.

A scoping review and qualitative analysis by Kokorelias et al. [11] identified core collaboration, comprehensive geriatric assessment and care coordination as key components of existing geriatric models of care for older adults living with HIV. However, this work also highlighted that the gold‐standard model for delivering HIV care to older adults has not yet been defined, especially in Canada [11]. While the population of older adults living with HIV is growing in Canada, discussions around HIV and ageing remain relatively nascent in clinical, advocacy and policy settings. Unlike jurisdictions such as the United Kingdom, where ageing with HIV is more widely recognized in healthcare planning and service delivery, Canadian health systems have been slower to integrate geriatric care tailored to this population [11]. This limited focus may contribute to the gaps in provider knowledge and the absence of proactive referral pathways to geriatric services described by participants in this study. Building on prior research in Ontario, Canada [27], our study focuses on older adults' experiences with geriatric care, aiming to identify gaps, challenges and areas for improvement in care that addresses ageing and HIV.

To clarify the scope of geriatric care in this study, we define geriatric care as a multidisciplinary healthcare approach aimed at addressing the complex medical, functional and psychosocial needs of older adults. In the context of older adults living with HIV, this includes managing age‐related comorbidities, polypharmacy and cognitive health, while also considering the intersectional stigma and social determinants of health that impact this population [9, 28, 29, 30]. We recognize that geriatric care is not exclusive to geriatricians but includes the involvement of HIV health providers, primary care physicians and allied health professionals [11]. While all individuals with HIV are ageing, this study focuses specifically on older adults living with HIV, defined as those aged 50 years and older. This cohort includes individuals who have aged with HIV over decades, as well as those diagnosed later in life.

METHODS

An exploratory community‐based qualitative descriptive study [31] was conducted across Ontario, Canada's most populous and ethnically diverse province [32]. Our study gathered older adults with HIV's experiences of geriatric care in Ontario, focusing on service gaps and strengths. Approved by [Mount Sinai Hospital Research Ethics Board] (REB #23‐0106‐E), we adhered to TCPS‐2 2022, with written consent from all participants. The study ran from June 2023 to July 2024.

Research team positionality

This study was conducted by a multidisciplinary team with expertise in geriatric medicine, emergency medicine, infectious disease, family medicine, social work, rehabilitation sciences and qualitative research with diverse older adults. Two people living with HIV served as peer researchers, contributing to data collection and analysis. The team included members experienced in HIV care models for older adults and was supported by an advisory committee of community leaders, individuals with HIV and healthcare professionals [33].

Sample and recruitment

Participants had to self‐identify as HIV‐positive, be aged 50+ years and reside in Ontario. We made the deliberate choice to include participants who were under the age of 60 years, such that their inclusion reflects the well‐documented phenomenon of accelerated ageing among people living with HIV, who often experience frailty and age‐related conditions earlier than their HIV‐negative peers [1, 2, 13, 34, 35, 36]. We aimed for diversity in sex, gender, age, ethnicity, race, socioeconomic status and language. Quota sampling was applied to ensure representation across key demographic variables, while purposive sampling was used to select participants with varied backgrounds relevant to the research [37]. Our advisory team conducted community outreach at relevant meetings and events to assist with recruitment within their networks and organizations, such as support group gatherings, educational workshops for individuals living with HIV, and community health forums. We also conducted targeted recruitment through flyers at culturally diverse settings to ensure the inclusion of diverse populations [38]. We promoted the study through our advisory team's websites and social media and contacted gerontological and HIV organizations to reach potential participants. Focus group recruitment prioritized those already enrolled in interviews. None of the participants were known to the research team before data collection.

Our sampling approach was guided by the concept of information power, which emphasizes the sufficiency of the sample size based on the study's aim, sample specificity, quality of dialogue and depth of analysis [39]. Given the clear research objectives, the specificity of our participant group (older adults living with HIV in Ontario) and the richness of the data collected, we determined that our sample size was sufficient to capture meaningful insights.

Data collection

All participants contacted the research team to learn more about the study. All willing participants provided written consent and verbal re‐consent prior to data collection.

First, individual interviews were conducted with older adults living with HIV, conducted by trained non‐clinician qualitative researchers or peer researchers. We used a semi‐structured interview guide, developed collaboratively with individuals with lived experience and piloted with one advisory committee member. The guide included questions about healthcare experiences, scenarios participants had encountered and strengths and weaknesses of existing geriatric services. The guide was refined to explore areas of analytic relevance more deeply. See Supplemental Material 1.

Participants chose interview format (in‐person, phone, or videoconference). Each interview lasted 50–82 min (avg. 62), was transcribed verbatim, and followed by a voluntary demographic survey. Reflexive notes were documented post‐interview [40].

Following an analysis of the interviews, we contacted participants to participate in focus groups. Combining interviews with focus groups helped to triangulate the data and provide a more in‐depth understanding of experiences and perceptions [41]. We were unable to reach some participants (n = 7) for reasons including phone numbers or email not working, missed focus groups, or declining to participate. Thus, new participants were also recruited for the focus groups. Four focus groups were conducted.

Focus groups occurred in person and lasted approximately 2 h. Focus groups were facilitated by two research team members, one of whom had lived experience of HIV. The focus group guide consisted of semi‐structured open‐ended questions and was informed by the interviews (see Supplemental Material 2). The focus group guide was pilot tested with another lived experience member of our advisory team. During the focus groups, probes or recursive questioning were employed to delve deeper into issues and ensure a clear understanding of the information being gathered [42].

All focus groups occurred between June 2024 and July 2024. Participants completed demographic information, and audio data were professionally transcribed. Participants received hourly compensation for their time for interviews and focus groups via gift card honorarium of their choosing.

Data analysis

The lead and senior author reviewed all transcripts with a research assistant. All potential identifiers (e.g., names of people, healthcare locations) were replaced with pseudonyms in the transcripts by the research assistant. Data collection and initial analysis of the interviews were conducted simultaneously to determine when new interviews no longer contributed additional information, such that no significant new themes were identified [43].

The research team employed an adapted version of the Qualitative Analysis Guide of Leuven (QUAGOL) to analyze our data [44]. NVivo 14 software supported the organization of the data and coding process [45]. The QUAGOL is a comprehensive and systematic approach to qualitative data analysis, primarily ingrained in Grounded Theory. It consists of two phases: [1] a preparatory, inductive phase leading to a list of codes, and [2] a more deductive phase involving actual coding and analysis of emerging concepts [44]. In the first phase, the primary author created a summary of each interview, adhering closely to participants' words and phrasing. These were shared during team meetings, and through these, adjustments were made to the summaries to captured the research teams interpretations. These summaries were then open‐coded independently by two members of the research team [46]. Open‐coding involved breaking down qualitative data into discrete parts to identify and label concepts and categories [46]. A comparison of all coding resulted in a codebook, with each code briefly described based on our current understanding. One research assistant applied the codebook to all transcripts [46]. The coded data were discussed at bi‐weekly team meetings. Identified themes and ideas from the meetings were synthesized into conceptual reports. By creating detailed narrative summaries in phase one, adhering closely to participants' phrasing and engaging in iterative team discussions, we ensured that the coding process preserved the overall meaning of the data.

We conducted thematic analysis on the focus group discussions using the same QUAGOL framework as the interviews, ensuring a consistent and rigorous approach. A research assistant applied the QUAGOL‐informed codebook to both the interview and focus group transcripts using NVivo 14. During the coding process, detailed memos were created to capture emerging insights and contextual factors. The team engaged in regular discussions to review and refine the coding framework, comparing codes across interviews and focus groups to identify common and divergent themes. This triangulation process enhanced the breadth of the findings, capturing both individual and group‐level perspectives [47].

The focus groups were included in this study to explore unintended or emergent themes that could arise through group interaction and collective discussion. While the interview themes informed the initial development of the focus group guide, we maintained flexibility during focus group discussions to capture new insights and perspectives that had not emerged in individual interviews. While some overlap between themes from interviews and focus groups occurred, the group setting facilitated the discovery of new perspectives that were not captured in one‐on‐one interviews. Challenges in triangulating data from the same participants across different methods, such as peer influence in focus groups, were mitigated through careful facilitation and post‐focus group analysis, ensuring that individual voices were still prioritized in the data interpretation.

A research assistant used descriptive statistics to summarize the sociodemographic characteristics of the participants.

Criteria for rigour

We applied Whittemore and colleagues' criteria for conducting high‐quality qualitative research to ensure rigour in this study, involving credibility, authenticity, criticality and integrity [48]. We used non‐clinician and peer interviewers, along with a multidisciplinary analysis team, to reduce biases and explore differing opinions. Reflexive notes and team discussions ensured critical reflection of our roles throughout the study.

RESULTS

Nineteen unique participants participated in interviews (n = 14) or focus groups (n = 12). Seven people participated in both. Table 1 outlines the demographic characteristics of participants.

TABLE 1.

Participant demographics.

Demographic characteristic	Description	Number
Age groups (years)	50–54	5
	55–59	5
	60–64	2
	65–69	3
	70–74	1
	75–79	1
	80+	2
Gender	Man	10
	Woman	6
	Transgender	1
	Non‐binary	1
	Two‐spirit	1
Living setting	Urban	14
	Suburban	2
	Rural	3
Country of birth	Canada	8
	USA	1
	Guyana	1
	Vietnam	1
	Israel	1
	Uganda	1
	India	1
	Zimbabwe	1
	Trinidad and Tobago	1
	Uman	1
	Italy	1
	Armenia	1
Length of time in Canada	0–5 years	5
	6–10 years	1
	More than 10 years	4
	Whole life	8
	Prefer not to say	1
English your first language	Yes	10
	No	9
Ethnicity	Asian—East (e.g., Chinese, Japanese, Korean)	0
	Asian—South (e.g., Indian, Pakistani, Sri Lankan)	3
	Asian—South East (e.g., Malaysian, Filipino, Vietnamese)	1
	Black—African (e.g., Ghanaian, Kenya, Somali)	2
	Black—North American (e.g., Canadian, American)	0
	Indian—Caribbean (e.g., Guyanese with origins in India)	1
	Indigenous	2
	Latin American (e.g., Argentinean, Chilean, Salvadoran)	0
	Middle Eastern (e.g., Egyptian, Iranian, Lebanese)	0
	White—European (e.g., English, Italian, Portuguese)	4
	White—North American (e.g., Canadian, American)	6
	Mixed heritage (e.g., Black‐African and White—North American)	1
Sexual orientation	Heterosexual (straight, man/woman relationships)	6
	Bisexual	2
	Gay	9
	Lesbian	0
	Queer	0
	Two‐spirit	0
	Asexual	2
Household income before taxes	$0–$29 999	12
	$30 000–$59 999	1
	$60 000–$89 999	3
	$90 000–$119 999	1
	$120 000–$149 999	0
	$150 000 or more	1
	Don't know	1
High level education	Less than high school	4
	High school or equivalent	2
	Some college or university	4
	Degree or diploma from a college or university	6
	Graduate or professional degree	3
Disabilities (can be more than one)	A sensory impairment (vision)	7
	A sensory impairment (hearing)	1
	A mobility impairment (e.g., use of a cane)	3
	A learning disability (e.g., ADHD, dyslexia)	0
	A mental health disorder	5
	No disability or impairment	4
	No response	4
Co‐morbidities (can be more than one)	Diabetes	1
	High blood pressure	3
	High cholesterol	5
	Heart disease	0
	Cancer	2
	COPD	2
	Asthma	1
	Arthritis	3
	Dementia	2
	Chronic pain	6
	Diagnosed mental health condition	4
	Other	2
	No response	4

Although this study explores the experiences of older adults with HIV in relation to geriatric care, most participants had not been directly referred to or received formal geriatric services. Instead, their accounts reflect both their interactions with primary and HIV care providers and their perceptions of the geriatric care they believe they need but have struggled to access. Four themes were extracted from the data (Figure 1): (1) lack of knowledge and access to geriatric care among older adults with HIV; (2) concerns about healthcare providers' understanding of HIV and ageing; (3) role of social support networks in older adults' health; (4) identification of requirements for improving geriatric care for older adults living with HIV. The first theme describes a lack of knowledge and access to geriatric care among older adults living with HIV, with many participants expressing a desire for such services but not knowing how to obtain them. The second theme describes participants' concerns about healthcare providers' understanding of HIV and ageing, with fears of stigma and discrimination affecting assurance in seeking care. The third theme describes how social support networks play a crucial role in the health of older adults with HIV, highlighting the importance of community and peer connections for emotional and practical support. Lastly, participants identified requirements for improving geriatric care for older adults living with HIV, including comprehensive education and training for healthcare providers and increased access to virtual care.

FIGURE 1.

Illustration of findings.

In addition to the core themes identified, participants' narratives revealed a broader, overarching phenomenon that we conceptualized as ‘evolving stigma’. This model illustrates how the stigma experienced by older adults living with HIV is not static but changes over time, influenced by both external (healthcare interactions, social perceptions) and internal (self‐stigma, resilience) factors. The following section introduces this model and describes its key components, drawing on participants' experiences to illustrate its real‐world implications.

The central narrative of this study highlights the deeply ingrained and evolving stigma that older adults living with HIV experience. While the four core themes provided important insights into the experiences of older adults living with HIV, a broader phenomenon of stigma emerged during analysis. This was conceptualized as ‘evolving stigma’, which reflects how stigma associated with HIV, ageing and other intersecting identities shifts over time. Participants' narratives illustrated that stigma was not static but influenced by both external (e.g., healthcare interactions, social perceptions) and internal factors (e.g., self‐stigma, resilience). The evolving nature of stigma was evident in the participants' discussions, where HIV‐related stigma was compounded by other identity‐based stigmas (age, race, sexual identity). This theoretical model of ‘Evolving Stigma’ emerged directly from the data and provides a framework for understanding how stigma evolves as individuals live with HIV over time, intersecting with experiences of ageing, racism, homophobia and gender identity.

Participants shared stories of how assumptions tied to HIV shaped their lives, influencing everything from healthcare interactions to their sense of self‐worth. Participants noted that regardless of their gender, ethnicity, or socio‐economic status, their interactions with healthcare providers in the past was often met with the perceptions that they were ‘victims of HIV or victims of risky behaviour’ or were ‘to blame for the disease’ (Interview Participant 1, Woman, 57). Participants noted that when combined with other social identities, their stigmatization was intensified. As one participant noted, ‘you have HIV, so you're stigmatized, you're old, so you're stigmatized. I'm gay, so I'm stigmatized, and now add in that I have to wait in the [social assistance program] line—I'm basically screwed’ (Focus Group Participant 5, Man, 63). Conversely, another participant said ‘it all bottles down to HIV. You can be any colour, but it's the HIV people stigmatize’ (Interview Participant 14, Woman, 53). Participants described that ‘aging is at least a socially acceptable diagnosis’ (Interview Participant 14, Woman, 53).

Participants' narratives articulated a shift in their understanding of living with HIV over the years in line with an increased recognition of HIV as a chronic condition, rather than terminal; however, stigma remained. One participant mentioned, ‘everyone used to tip‐toe around me because they thought I was going to die. It's been over 30 years and I'm still alive, so at this point, I just learn to deal with their judgements. It almost gets worse because it's like I'm stigmatized for being alive with this [HIV]’ (Focus Group Participant 1, Man, 61).

While some participants welcomed the perception that they were no longer considered ‘a death sentence’ (Focus Group Participant 1, Man, 61), others were critical of this messaging. Specifically, it was noted that the underlying assumptions of individuals living with HIV as ‘victims’ continued to coexist with this increased understanding of their health status. One participant shared ‘at least before, no one talked about it. Now because so many people with HIV are still alive, they feel like it's okay to opening talk and ask if I have been on drugs or things like that’ (Interview Participant 3, Man, 82). For participants with intersecting identities, in particular non‐English speakers, the anticipation of the additional stigmas associated with older age led to avoidance of accessing geriatric care services. As one participant shared, ‘doctors will hear my accent and think I don't understand. What is going to happen when I get older, and they just assume I don't understand even more?’ (Focus Group Participant 4, Man, 73).

Theme 1: Lack of knowledge and access to geriatric care among older adults with HIV

All participants reported a strong motivation to better understand the role geriatric‐specialty care could have in maintaining or improving their health while ageing with HIV. However, participants noted that prior to the study, they were not referred to a geriatrician, or were unaware that geriatric care services were relevant or available to them. Participants described a range of emotions for not knowing about geriatric care, including surprise and frustration. As one participant shared, ‘I have my family doctor, I have my pharmacist, I have my infectious disease doctor, I didn't think I needed anyone more, but you [interviewer] are making me think I do’ (Interview Participant 11, Man, 68). Many participants began to connect some age‐related concerns, such as challenges with word‐finding or memory, with their experience of HIV. A few participants mentioned perhaps they could not qualify for geriatric services because they also had HIV. While some participants reported feeling that their current primary care provider should be responsible for handling these concerns, many reported that their existing care team should be providing referrals to geriatric care. As highlighted by one participant ‘How am I supposed to know who I'm supposed to see? I trust my family doctor to tell me. But they didn't and now I'll be up trying to Google how to find this type of care’ (Focus Group Participant, Woman, 55).

While all participants noted obstacles to geriatric care due to lack of knowledge and/or referral, a few participants expressed views on how the government fails to provide information to older adults living with HIV. The same participant asked, ‘if I had cancer or something, would I have known about these services?’ Other participants noted doubts about accessing geriatric services, even if they knew where they were. This included noting that services they did not have access to were ‘so expensive and not covered or they are so far away or in downtown’ (Focus Group Participant 2, Man, 61).

Theme 2: Concerns about healthcare providers' understanding of HIV and ageing

Participants, while interested in geriatric care, expressed concern over healthcare providers' understanding of HIV and ageing. Some participants shared stories of healthcare professionals who admitted to not knowing much about HIV treatment. Participants also described feeling as if they would be the only one living with HIV under a geriatrician's care and thus, ‘there would be no precedent for people aging like [them]’ (Focus Group Participant 12, Woman, 61). Participants also expressed concerns that their HIV healthcare providers lacked the expertise to effectively manage their ageing‐related conditions, leading them to question whether their evolving care needs were being adequately addressed. Many participants therefore described that the care they could receive would be experimental.

Many participants thought that this lack of expertise would exclude them from geriatric care that would benefit other symptoms they were experiencing. As highlighted by one participant, ‘HIV is one thing, dementia is another. I don't know how a doctor could help me with both, but maybe I go just for dementia’ (Interview Participant 15, Man, 57). Participants noted examples of when they received conflicting information from primary care or HIV providers or sought advice online or from peers. One participant explained, ‘they [physicians] didn't think we'd even live this long; how can they take care of us living with HIV when they never cared for us’ (Interview Participant 3, Man, 82). Participants felt that knowing the healthcare provider's expertise and qualifications in HIV and geriatrics would increase their willingness to utilize geriatric services.

Theme 3: Role of social support networks in older adults' health

In reflecting on their geriatric care experiences, participants expressed a strong desire for greater social and emotional support from healthcare providers as they aged with HIV. Participants shared a diverse range of experiences, with many participants relying on friends and peer networks for psychosocial support, particularly when family members were unable to provide adequate care or understanding. Some participants noted that family members struggled to understand their experiences with HIV, ageing and the complexities of both, contributing to feelings of isolation. Others highlighted a lack of open communication or the stigma attached to their HIV status, which led to strained relationships. However, a few participants shared that their families were supportive, but the emotional burden of caregiving or misunderstanding about ageing with HIV sometimes created distance. One participant shared, ‘I want to be treated with compassion. I want someone to talk about the cost of medicine. Or how I'm feeling. Not just read a medical checklist’ (Focus Group Participant 11, Non‐Binary, 61). Another participant shared, ‘Sometimes I lie and have to say I have no family. But I do, I just don't always talk to them’ (Focus Group Participant 1, Man, 61).

Participants also noted the importance of feeling that their providers cared about their fears and concerns about growing older with HIV. Many participants described ‘not knowing what to expect’ as they age (Interview Participant 10, Woman, 54). However, a few participants also recounted experiences with healthcare providers that were painful and disheartening, resulting in them feeling unsupported. One participant shared, ‘what choice do you have when you can't just find another doctor, so even after all he said to me, I have to go back, but I shut down’ (Focus Group Participant 6, Man, 55).

In the absence of supportive healthcare providers, participants emphasized the vital importance of community and peer networks in providing emotional support and practical assistance. These networks served as invaluable resources for sharing experiences, coping strategies and navigating the complexities of ageing with HIV. Participants highlighted how these connections fostered a sense of belonging, reduced feelings of isolation and empowered individuals to actively manage their health and well‐being. Additionally, peer support networks were instrumental in accessing information about healthcare services, advocating for rights and promoting resilience despite stigma and discrimination. As one participant shared, ‘maybe I don't even need a geriatrician. Maybe I just need to talk to more people living with HIV who are older than me. They would have seen it all and probably know more about our conditions’ (Focus Group Participant 8, Woman, 51).

Theme 4: Identification of requirements for improving geriatric care for older adults living with HIV

Most participants reported a desire to give healthcare providers feedback on how to improve their care, but only a few reported having done so. As one participant shared, ‘I can complain or make a kind suggestion, but it doesn't really make a difference because it's not like they [doctor] have to listen and it's not like it's easy to find someone who knows how to care for someone old with HIV’ (Interview Participant 4, Man 92). When participants were probed about their recommendations for geriatric care, they wanted to ensure that all providers communicated with their infectious disease provider. As one participant described, ‘they know the HIV, and for some reason, it's what no one else knows’ (Interview Participant 6, Man, 69). Most participants agreed that it was helpful to communicate with social care providers, particularly regarding assistance with housing, medication costs and mental health. Specifically, participants mentioned that they wanted geriatric care providers to consider the complexity associated with ageing with HIV, particularly, the additional emotional and financial toll. One participant shared, ‘so if I get diagnosed with something else from a geriatrician, again, whose paying for the medicine? I have friends who pay over $1000 a month in medicine. And then there is the mental coming to terms that I may be living for longer than I thought. So, if a doctor knew where else I can get help, that would be great’ (Interview Participant, 9, Man, 53).

Participants also shared that comprehensive education and training should be made more available to geriatric care providers, as this would increase feelings of approachability and trustworthiness towards their care providers. Similarly, participants highlighted the need for substantial and systematic change within health services, indicating that the challenge extends beyond simply educating geriatric care providers and requires broader structural adjustments in healthcare delivery:

We have been living with HIV. We have the lived experience; they have the textbooks. I just wish more would come and talk to us. And also, learn about HIV because more and more will be coming to their geriatric clinics. I hope that as everyone learns more, they continue to read up on us (Focus Group Participant 7, Man, 59).

Participants also strongly believed that virtual geriatric care should be offered. This was particularly true for those who did not live in an urban city, noting that many specialty services were only available in central urban areas or major metropolitan centres. Many participants expressed concerns about confidentiality with in‐person geriatric care, and noted virtual care could help support this. However, at the same time, participants were cautious about the privacy of the provider. One participant shared, ‘you have to make sure the doctor isn't just at their house with everyone to hear’ (Focus Group Participant 9, Woman, 50).

DISCUSSION

This study explored the experiences and perceptions of Ontario‐based older adults living with HIV regarding geriatric care. Our findings reveal a disconnect between the growing need for geriatric care among older adults living with HIV and their limited access to or awareness of such services. Although participants shared limited direct experiences with formal geriatric services, their narratives reflect the perceived barriers to accessing appropriate care. This underscores the need for improved pathways to referral and greater collaboration between HIV and geriatric care providers to bridge this gap. We identified key themes such as the lack of knowledge about geriatric services, concerns over healthcare providers' understanding of HIV and ageing, the crucial role of social support and the need for improved care strategies. Findings from this study confirm previous research on the additional stigma associated with ageing with HIV [49], particularly in the presence of overlapping identities such as race [27] and the important role of social support [50]. This research extends existing literature by highlighting specific perceptions older adults living with HIV have about geriatric care providers and services, including the perception that they may not qualify. This research builds on previous studies which identified core components of geriatric care but did not fully explore patient perspectives [11]. The findings underscore the importance of comprehensive training for care providers and the integration of virtual care options, offering actionable insights to enhance quality and accessibility of care for this growing demographic. While it is true that few participants in this study had accessed geriatric care, the study highlights the barriers, misconceptions and gaps in knowledge surrounding geriatric services for this population. By focusing on participants' experiences and concerns—such as the lack of provider expertise in both HIV and ageing, the challenges of accessing specialized services and the evolving nature of stigma—this study offers a nuanced understanding of the factors that may prevent older adults living with HIV from seeking or benefiting from geriatric care. Moreover, the research emphasizes the importance of tailored education and training for healthcare providers, which is crucial for improving trust and care outcomes. In doing so, the study expands on previous work by exploring the intersection of HIV, ageing and healthcare access, particularly for those who may not yet have utilized geriatric services, but still experience substantial healthcare needs.

While our study highlights the role of geriatric care in supporting older adults living with HIV, we acknowledge the essential contributions of HIV health providers in delivering effective care. Many participants expressed a desire for collaborative care models where HIV specialists, primary care providers and geriatricians work together to ensure continuity of care. This aligns with emerging models of integrated care, which emphasize co‐management of HIV and age‐related conditions through shared decision‐making and cross‐specialty collaboration [11]. We further recognize the expertise of HIV health providers in managing age‐related complexities, including polypharmacy, cognitive decline and psychosocial challenges, and emphasize the potential for integrated care models to enhance service delivery and improve health outcomes for this population. Future research should explore strategies to enhance collaboration between HIV and geriatric care providers, including interdisciplinary education and co‐located care models [11, 51].

Research indicates that many older adults living with HIV are often overlooked in HIV treatment and prevention campaigns, which traditionally focus on younger populations [11]. Participants shared their concerns about difficulties in accessing geriatric services, reinforcing existing findings that challenges such as organizational barriers, lack of a geriatric health workforce and inadequate funding complicate the referral process. Organizational and systemic factors, such as the lack of a geriatric health workforce [52, 53], competing demands on healthcare providers' time, insufficient community resources and inadequate funding, complicate the referral process [54, 55, 56]. Older adults face challenges accessing care due to knowledge gaps, not knowing what questions to ask and overcoming complications during care transitions [56, 57]. Compounding these issues, stigma associated with ageing with HIV [49, 50, 58], sometimes exacerbated by intersecting factors such as race [49, 59], creates additional obstacles. Our participants echoed concerns that providers may misunderstand the role of geriatric care or harbour biases due to their own lack of knowledge about ageing with HIV. While racial discrimination can further complicate access to care, our participants perceived HIV‐related stigma as the most significant obstacle. This stigma can lead to biases and misunderstandings of what geriatric care could offer, further exacerbating difficulties in accessing care. Moreover, the internalized stigma experienced by older adults can result in reluctance to disclose their HIV status to geriatric care providers, leading to missed opportunities for appropriate care and support [60, 61]. Thus, researchers and policy makers need to consider the broader social determinants of health that influence access to geriatric services for people with HIV. While participants' experiences of living with HIV were central to their healthcare interactions, other factors, such as sexual identity [62, 63], drug use history [64] and migration‐related challenges [65], also can shape their access to care. Future research should explore how these intersecting identities impact the stigma experienced by older adults living with HIV, and how these stigmas influence their geriatric healthcare behaviours. Future research could focus on identifying obstacles within healthcare that prevent referral and integration of geriatric care, plus evaluating the effectiveness of targeted educational programs for both healthcare providers and patients. This includes examining how HIV‐related stigma affects provider understanding and the quality of care offered. Moreover, future models of geriatric care should adopt an intersectional lens to address these overlapping factors, ensuring equitable access and reducing barriers to care.

Our findings highlight that participants' limited direct experience with geriatric services, coupled with the current configuration of these services in Canada, may contribute to misconceptions or unmet expectations. Although some participants expressed a desire for geriatric care, the traditionally narrow eligibility criteria for geriatric services, which often prioritize older adults aged 65 years and over, may exclude people living with HIV who experience accelerated ageing in their 50s. This structural barrier reduces access to specialized ageing‐related care. Concurrently, infectious disease physicians, who frequently serve as the primary care providers for older adults living with HIV, may not be addressing age‐related concerns proactively due to the younger historical demographic of their patient populations. This highlights the need for healthcare system reforms that foster greater collaboration between HIV and geriatric care services, alongside targeted education for both infectious disease and geriatric providers to promote more integrated, age‐responsive care. The recommendations made by participants align with recent shifts in medical and public health towards integrating geriatric care frameworks into HIV models of care [11, 58, 66]. Key components of integrated models include collaboration between HIV specialists and geriatricians, organization of care to address multiple comorbidities, and support for care that encompasses physical, mental and social well‐being [11]. However, research indicates that while such integrated models show promise, there is a need for more evidence on their long‐term effectiveness, particularly in diverse settings with low resources [11]. There is also a push to integrate social care within geriatric‐HIV models of healthcare, by connecting with cross‐cultural community organizations [29, 67]. Another approach involves having dually trained geriatric and HIV providers [11, 68, 69]. Studies reveal that while geriatricians possess a basic understanding of HIV transmission, prevention and symptoms, they often lack knowledge about HIV‐related issues specific to older adults [24]. Furthermore, geriatricians often refrain from HIV testing for older adults due to concerns about offending patients, despite the rising incidence of HIV in this demographic [24]. Participants' recommendations support the call for enhanced education and training in HIV within geriatric medicine curricula, plus the development of collaborative care models that integrate HIV specialists and geriatricians [24]. Investigating the impact of peer support, community resources and virtual care options could offer insights into improving access to care and reducing feelings of isolation among this population. In addition, improving health literacy regarding what geriatric care entails could help reduce stigma or misconceptions and encourage timely engagement with these services. This complements the equally important need for geriatricians to receive education about HIV, ensuring that both service users and providers are equipped to engage in informed, collaborative care planning.

LIMITATIONS

Challenges in accessing services and stigma around HIV and ageing may have underrepresented individuals less engaged with healthcare, with most participants never referred to a geriatrician. The impact of ‘disclosure’ in this study is significant, as challenges in accessing services and stigma related to HIV and ageing may have led to an underrepresentation of individuals who were less engaged with healthcare or hesitant to share their experiences due to concerns about disclosure. Fears of stigma and concerns about providers' knowledge of HIV and ageing may have affected disclosure. Many participants, particularly those who had not been referred to a geriatrician, may have had fears about the potential consequences of revealing their HIV status or concerns about the providers' lack of knowledge regarding both HIV and ageing. The study's focus on urban Ontario and exclusive use of English may have excluded non‐English speakers and missed perspectives from other regions. Purposive and quota sampling, while promoting diversity, may have led to selection bias.

CONCLUSIONS

This study highlights the challenges experienced by older adults living with HIV regarding geriatric care in Ontario. Participants revealed significant gaps in knowledge and care, concerns about providers' understanding of HIV and the critical role of social support. Addressing these issues requires enhanced provider education, improved care coordination and expanded access to virtual care. The evolving stigma associated with ageing and HIV underscores the need for comprehensive and empathetic care models that integrate geriatric and HIV‐specific expertise to better meet the needs of this growing demographic.

CONFLICT OF INTEREST STATEMENT

The authors declare no conflicts of interest.

ETHICS STATEMENT

This study was approved by the institutional review board at Mount Sinai Hospital (REB #23‐0106‐E) in accordance with the Tri‐Council Policy Statement 2 (TCPS‐2). All participants provided written consent.

Supporting information

Data S1. Supporting Information.

Data S2. Supporting Information.

Kokorelias KM, Valentine D, Eaton AD, et al. “They didn't think we'd live this long”: A qualitative exploration of older adults living with HIV perspectives on geriatric care in Ontario. HIV Med. 2025;26(8):1211‐1223. doi: 10.1111/hiv.70047

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.