When HIV and AIDS first appeared on the scene thirty years ago, it was a terrifying illness that quickly killed those who became infected. Yet through scientific and community efforts it’s now turned into a condition that, if diagnosed and treated in a timely manner, can be managed into old age.
Thanks to such advances in treatment, people with HIV are living much longer than ever before. According to information compiled by CATIE, it’s estimated that 12% of HIV+ people in Canada are 50 years of age or older. This number is expected to increase by as much as 20% over the next decade. Unfortunately, the number of people aged 50 and older who are newly diagnosed with HIV is also growing.
So it was with particular interest that I attended a presentation at the recently concluded Ontario HIV Treatment Network research conference in Toronto on the challenges experienced by older adults living with HIV. The presenter was Dr Patty Solomon, the director of the School of Rehabilitation Science at McMaster University in Hamilton, Ontario.
I had the opportunity at the conference to speak with Patty about the research that she and her colleagues at McMaster are doing. Here’s our conversation.
John McCullagh: Thank you, Patty, for agreeing to talk to PositiveLite.com about your research into the challenges faced by older adults living with HIV. Before we start, perhaps you’d tell us a little bit about yourself and what led to your interest in this subject.
Patty Solomon: Thank you, John. I teach and do research at McMaster University. My background is in physiotherapy. I became interested in the role of rehabilitation over a decade ago when I realized that there was a tremendous role that could be played by physiotherapists and occupational therapists in improving the quality of life of people living with HIV. I became involved with the Canadian Working Group on HIV and Rehabilitation and, with other colleagues, developed a program of research which focuses on HIV-related disability. As people are now living longer and developing disabilities related to both the virus and to the side effects of medications, rehabilitation is becoming more and more important. As HIV is now a manageable chronic illness and no longer a death sentence, this need will only increase as more and more people with HIV age.
JM: Your research, then, is based on interviews with people with HIV who are 50 and older, right? How were they recruited?
PS: Yes, that’s right, John. We recruited people living with HIV (PHAs) through AIDS service organizations and hospital clinics. We also enlisted people through “word of mouth” as many of those we’ve interviewed contacted their colleagues and friends and informed them about the study.
JM: Were these face-to-face interviews?
PS: Yes, the majority of the interviews were face-to-face. We also wanted to include people who were living in more rural areas to make sure that our findings reflected their experiences. So we conducted a few interviews by phone.
JM: Can you tell me about the age range of the participants and how long they’d been living with HIV?
PS: The participants ranged in age from 50 to 74 years and their average age was 55.
JM: I’m interested to know whether they were a mix of women, gay/bisexual men and people of different racial/ethnic backgrounds?
PS: We had 20 participants who identified themselves as gay or bisexual men, one who identified as a lesbian or bisexual woman, 12 straight women and two straight men With respect to ethnic background, we had 29 people identify as Caucasian, four as persons of colour and one as Latino. Currently, as our research continues, we’re trying to recruit participants who’ll provide us with more cultural diversity.
JM: Patty, aging brings with it challenges for us all, but there are specific concerns faced by older people with HIV, aren’t there? What are the sources of these challenges? I imagine that issues about present or future physical needs are a real concern.
PS: Yes, our findings suggest that the uncertainty that older adults living with HIV experience is a major challenge. Some of that uncertainty is related to understanding whether some of the physical changes are related to “normal” aging or to the virus. There were also other concerns related to what I refer to as the episodic nature of living with HIV; that is the fluctuating or changing nature of the virus that results in good and bad days. As we’re entering new territory with respect to knowing all the long term physical consequences of aging with HIV, many of our participants are concerned about the physical challenges they’re experiencing, or might experience, and how these could affect their ability to carry out their day to day activities.
JM: And what about cognitive changes and mental health concerns?
PS: Well, participants in our study worried about whether some of the cognitive changes they were experiencing, such as difficulties with memory, were related to the normal aging process or to their HIV.
JM: Patty, did the participants in your study have any concerns about the quality of care they’re receiving, or might receive, from health care providers? Did they worry that these providers might not understand the unique needs of getting older when you’re HIV positive?
PS: Yes, John, they did. They were worried about having health care providers who didn’t have experience in treating older adults living with HIV. Geriatricians work with older adults, and infectious disease specialists and HIV doctors deal with HIV, but there is a need to combine these two specialties. And it’ll be important to have other health care providers involved in the care of older adults living with HIV. For example, rehabilitation therapists such as physiotherapists and occupational therapists can help with managing pain, improving strength and maintaining mobility and independence. And speech language pathologists and psychologists can help with cognitive strategies. It’ll be important to have many different kinds of health care providers involved in order to maintain the best health outcomes for older PHAs.
JM: Of course, getting older with HIV isn’t just about our health needs, is it? It’s also about transitioning to retirement and financial security. Could you talk a bit about that?
PS: Sure, John. Many long term survivors didn’t plan on living long lives when they were first diagnosed. Therefore we found that they didn’t save money or have a long-term financial plan. Others were not motivated to complete their education or training as they didn’t think they’d be working for too many years. So it is going to be important in the long term that there’s a disability or pension support system for long term survivors who were diagnosed early in the epidemic that enables them to maintain a reasonable quality of life.
JM: Patty, did the participants in your study worry about who’d take care of them as they aged? And I’m thinking not just of social support but also housing. Was there a fear of social isolation and concerns about the future need to move into a long-term care home?
PS: Yes, there was a great deal of concern related to the availability of housing for older adults living with HIV. Participants worried about the extent to which they’d encounter stigma in nursing homes where employees and residents might be unfamiliar with HIV and have misconceptions about it. They worried about being a burden on their loved ones. Others who’d lost partners worried about whether there would be anyone who would be able to take care of them.
JM: What about HIV disclosure and discrimination? And homophobia?
PS: Well, concerns related to stigma are ongoing. This is highlighted in the lives of some of the older adults who grew up in an era that was much less tolerant of the LGBTQ community. Many participants are still very concerned about disclosure and how it could affect their supports and housing options.
JM: Growing older isn’t all doom and gloom, even for those of us living with HIV, is it?
PS: No, it isn’t. I think it’s important to state that we found that there were older adults living with HIV who were doing well and were looking forward to growing old. It’ll be important for future research to learn what enables PHAs to maintain a positive attitude as they grow older and what supports we’ll need to put in place to allow them to do so.
JM: Patty, what are the main conclusions that you’ve drawn from your research so far?
PS: We’ve identified that even though our participants are relatively young, with an average age of 55, they’re experiencing challenges in what I term social participation. Many have difficulties in forming new relationships and feel socially isolated, are experiencing difficulties maintaining work or volunteer positions and have given up some of their discretionary activities. We’ve also learned that there are other important factors that contribute to the disability experienced by PHAs, such as the presence of other health conditions, the amount of social support they have available to them, and stigma. We’re doing further research to help us better understand these complex relationships.
JM: I know your work is ongoing. What are the next steps?
PS: We’re completing some additional analyses of 14 more interviews. After the analyses are complete, we’ll be presenting our findings back to some of the PHAs that were interviewed to get their feedback and to help us develop a model that explains our findings. Ultimately we hope to use these findings to inform the practice of health professionals and influence policy so that, as they age, PHAs will be able to have the supports and services they need.
JM: Thank you so much, Patty, for taking the time to talk to PositiveLite.com about this fascinating research into the needs of older HIV+ people and the relation between aging and having HIV.
PS: You’re most welcome, John.