HIV, Social Work and Brain Health: Community Report by AIDS Committee of Toronto (ACT)

HIV, SOCIAL WORK, AND BRAIN HEALTH: COMMUNITY REPORT

HIV, Social Work, and Brain Health Community Report Andrew D. Eaton1,2, Shelley L. Craig2, Jocelyn Watchorn1, John W. McCullagh1, Chantal Mukandoli1, Robert Wallace1, and David McClure1 ACT – AIDS Committee of Toronto,2 Factor-Inwentash Faculty of Social Work at the University of Toronto

The research team would like to thank: Research participants for participating in the survey and interviews; Ty Best for graphic design; Vincent Francouer for French translation assistance; and the following individuals and organizations for their support: Dr. Winston Husbands; Dr. Francisco Ibáñez-Carrasco; John Maxwell; Dr. Sean B. Rourke; Canadian Working Group on HIV and Rehabilitation (CWGHR); Casey House; CATIE; and the Ontario HIV Treatment Network (OHTN). Exploring the role of social work in supporting people affected by HIV-Associated Neurocognitive Disorder (HAND) was funded by the Ontario HIV Treatment Network (Community-Based Research & Evaluation Fund - CBR1043). The funder is not responsible for the content of this report. Address correspondence to: Andrew D. Eaton, MSW, RSW Principal Investigator aeaton@actoronto.org

Table of Contents Forward...........................................................................................................................................................................4 Introduction...................................................................................................................................................................5 Study Design..................................................................................................................................................................7 Results..............................................................................................................................................................................9 Conclusions and Recommendations...................................................................................................................12 Resources......................................................................................................................................................................13 Glossary..........................................................................................................................................................................14 References....................................................................................................................................................................15

HIV, SOCIAL WORK, AND BRAIN HEALTH: COMMUNITY REPORT

Forward For people living with HIV, uncertainty and unpredictability about changes in cognitive functioning can cause great stress, and shake one’s confidence and self-esteem. Are these just normal changes with age, or are they caused by HIV, side-effects of medication, presence of other medical comorbidities, substance use, or a combination of all of these? Since 1987, we have known that HIV can cause a range of cognitive changes (mild to more severe) – and often these are worse and more complicated when there are other medical and mental health issues occurring – but thankfully since the advent of combination antiretroviral therapy in 1995 we are now mostly seeing only milder forms of HIV-associated neurocognitive disorders or HAND. As the population of people living with HIV ages, cognitive impairments are a growing challenge for both people living with HIV and their caregivers. For the doctors caring for people with HIV, subtle cognitive changes associated with mild HAND are extremely difficult to diagnose and treat or manage. There is always a question of whether the changes are the result of depression – which can be treated with medication – or of the virus. There is an urgent need for better screening tools, diagnostics, health promotion and treatment strategies to reduce these challenges and to support people living with HAND as they age. There is exciting new research underway to find ways to help clinicians recognize the early signs of HAND and to identify and test interventions that may slow cognitive impairments and reduce their symptoms and the impact that these are having on people’s lives and their everyday functioning. And while all of this is very important, we also need to be listening to people who are living the experience. I commend Andrew Eaton and his research team (which included peer researchers in all stages of the study) for their exciting work to understand people’s experiences. They interviewed people living with HIV over 50 years of age about their experiences of HAND: they asked questions to determine what are their main concerns (and how often they occur), how they cope and manage, and what supportive services (medical, social and community-based) are available, or not, to meet their needs. Their stories are providing “real life” information on the individual experiences and the health care gaps we need to know about in order to develop more effective and accessible health and social services for HAND. Eaton’s work is a key piece to our understanding of HAND. Increasing awareness and knowledge about HAND is very important – what it is, how it can be identified, what interventions, supports and services are most effective, and what are the strategies people are using to cope with day-to-day activities and demands. Knowing is much better than not knowing, and being able to provide the key medical facts as well as the lived experiences of how people are managing and coping with HAND can help people take control and adjust – and this will be good for their health and wellbeing. Sean B. Rourke, Ph.D., FCAHS Scientific and Executive Director Ontario HIV Treatment Network (OHTN)

Introduction Executive Summary HIV-Associated Neurocognitive Disorder (HAND) is an issue that can affect many people living with HIV. Social workers and community-based HIV organizations (CBOs or ASOs) are in a unique position to provide specialized support services regarding HIV and aging. The acquisition of empirical data from people most affected by HAND will inform how social workers and other helping professionals provide support to people growing older with HIV and AIDS. As there is an absence in existing literature regarding client engagement on this topic and on evidence-based HAND-specific social work interventions, people most affected by HAND need to be consulted regarding their needs and how social workers can support them before an intervention is piloted. This research study aimed to engage people living with HIV over the age of 50 who are concerned about their cognitive health to address this research and service gap with the goal of utilizing the studyâ&#x20AC;&#x2122;s findings to develop and improve social work interventions and community-based programs and services regarding HIV, HAND, and aging.

What is HAND? HAND is defined as neurological disorders that cause cognitive impairment1,2,3. HAND is classified in three forms: 1. Asymptomatic Neurocognitive Impairment (ANI) A person with ANI will likely not have any problems with daily functioning, however they will show impairment on neurocognitive testing and may experience headaches1,3. 2. Mild Neurocognitive Disorder (MND) MND is characterized by mild interference in daily functioning, such as short-term memory loss1,3. 3. HIV-Associated Dementia (HAD) HAD is diagnosed if an individual is significantly impaired in their ability to learn new information, maintain attention, and concentrate on tasks1,3. Medical research literature on HAND shows a shift from high rates of HAD to high rates of MND and the more common ANI1,3. This shift is a result of the increased effectiveness of combination antiretroviral therapy (cART) compared to older HIV medications1. ANI increases the chances of further decline to cognitive functioning, resulting in a more serious prognosis, yet the early detection of ANI could lead to opportunities to delay such declines in cognition1,3.

HIV, SOCIAL WORK, AND BRAIN HEALTH: COMMUNITY REPORT

How is HAND diagnosed? In Canada, HAND is diagnosed by clinical neuropsychologists or other health professionals (e.g. doctors)1,3,4. Testing for HAND involves a series of questions and psychometric tests that assess the individual’s processing speed, thinking, attention, and memory1,3,4. Clinicians rule out other causes of memory challenges like depression, substance use, and normal aging before concluding a diagnosis of HAND1,3,4.

What are the signs and symptoms of HAND? Signs and symptoms of HAND can include:1,3,4 a) b) c) d) e)

Difficulty concentrating Struggling to learn new skills Increased forgetfulness Slowed reaction times Frequent confusion

Is HAND preventable and treatable? Yes! Getting tested for HAND is important, as early identification can slow HAND’s progress1,3,4. HIV medications are the most effective form of HAND prevention and treatment1,3,4. HAND can also be prevented by increasing cognitive reserve5,6. Cognitive reserve is the brain’s resistance to cognitive decline and can be increased by: a) b) c) d) e)

Exercising regularly Healthy eating Social supports Managing other issues such as anxiety, depression, or substance use Working or volunteering

Social Work and HAND Social workers and community-based HIV organizations (CBOs or ASOs) can help people living with HIV identify ways to increase their cognitive reserve, develop coping strategies for everyday life, and be a consistent contact for follow-up about brain health concerns. Such support could reduce anxiety, stigma, and isolation while increasing the overall cognitive health of people affected by HAND.

Overview

Study Design

This study used an explanatory sequential mixed-methods research design informed by a participatory action research (PAR) framework to engage people over the age of 50 who are living with HIV (i.e. HIV-positive) and who are concerned about their cognitive health. Four peer researchers were engaged with the study from conceptualization through to publication. Phase one of this research study was a quantitative survey (n=108) that the research team developed to better understand the demographics, brain health concerns, and social work experiences of the sample. Phase two of the study was qualitative interviews of 20 survey participants to better understand their concerns and experiences. Peer Researchers Including peer researchers (i.e. people living with HIV over age 50 who are concerned about their cognitive health) as equitable research team members was a crucial component of this research study. Paid compensation, full involvement in the research process, and opportunities to determine their own capacity building needs were integral components to study design. The peer researchers were asked to provide input into all stages of the research study, with a focus on keeping the study accessible for people living with HIV. One recommendation that the peer researchers made was to promote the study using the title ‘HIV, Social Work, and Brain Health’. The peers recommended the use of the term ‘brain health’ instead of ‘cognitive health’ or ‘HAND’ as they felt it was an easier term to understand across culturally and linguistically diverse communities of people living with HIV. The principal investigator (PI) worked with the peer researchers throughout their project to build their capacity in research. One of the four peers had worked as a peer researcher before; for the other three, this was their first peer research experience. Based on requests from the peer researchers, the PI circulated articles and videos concerning HIV and cognitive health, conducting peer research, and study design throughout the duration of the research project. Additionally, the OHTN (the project’s funder) generously offered a 12-hour training to the peer researchers on how to conduct qualitative interviews prior to phase two of the research project. The training agenda featured interactive sections on a) defining community-based research; b) learning how to talk about the study you represent; c) explaining this study’s rationale, methods, and goals; d) how to conduct a qualitative interview; and e) self care as a peer researcher. A collaborative partnership was established early in the project, as the full research team met regularly starting at the project’s earliest stages (i.e. conceptualization and funding). This collaborative approach was undertaken to mitigate the challenges encountered in previous mixed-method studies that sought to engage peer researchers.

HIV, SOCIAL WORK, AND BRAIN HEALTH: COMMUNITY REPORT

Peer Researchers (continued) Challenges from previous studies that the team worked to overcome included:7,8,9 a) ‘Tokenism’ (i.e. peers feeling that they are involved only for superficial purposes) b) Research team members disagreeing on terminology c) Misunderstanding of the data and project objectives from peer researchers Furthermore, the PI attempted to follow best practice guidelines developed from recent PAR-informed literature, such as:10,11 a) Ensuring that peer researchers were appropriately compensated b) Understanding team members’ unique social locations c) Prioritizing the needs of the peer researchers in determining meeting agendas

Research team members (from left: Robert Wallace, David McClure, Chantal Mukandoli, John McCullagh, and Andrew Eaton) with Dr. Francisco Ibáñez-Carrasco from the OHTN (far right).

Results The results below are based on a survey and interviews of people living with HIV over age 50 who are concerned about their brain health. The survey was available to complete online or in-person at ACT from May to August 2015, and 108 qualifying responses were received. The interviews were conducted from October to December 2015 and the interviewees had expressed interest in attending an interview upon completion of the survey.

Research Question #1 What are the self-identified concerns of HIV-positive people over age 50 who are concerned about HAND in Ontario? Predominant concern: “Is it aging or is it HIV?” Participants’ perception of themselves and their fears and anxieties concerning cognitive health were frequently centred around uncertainty regarding what issues HIV is causing and what issues can be attributed to the aging process. This question arose from participants during survey and interview sections on cognitive health, life with HIV, and coping strategies. Participants indicated that this question affected their overall health, how they perceive their experiences, their sense of what is real, and their reactions to new issues and concerns. One interviewee summed up this concern with the following response: “My doubts about the brain fluids is – it’s just, is it aging? Being old? Or is it the HIV that affected it? Or was it the medication of the HIV? I don’t know. But nobody knows. I think it’s normal, at a certain point, to start having troubles. At 58, 60. Everybody does, so being HIV is probably worse, but you deal with it.” (I10, 50-59 years old, male, Hispanic/Latin American) Another participant expressed this same concern, saying “Every time I get something and I say…’do you think this has any relation to the HIV?’ and [my partner says] ‘well, you know, you are aging and you are HIV.’” (I08, 60-69 years old, male, white/Canadian). A third interviewee echoed these concerns, saying “Like how do I know which…what is actually because of the HIV, or is it just normal due course for aging, you know? Like, what do I need to expect, you know?” (I12, 60-69 years old, male, white/Canadian).

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HIV, SOCIAL WORK, AND BRAIN HEALTH: COMMUNITY REPORT

Research Question #2 How have these concerns been addressed or not addressed through existing programs and services from social workers, hospitals and clinics, and communitybased HIV organizations (CBOs or ASOs)? In responding to the multi-answer question of ‘who provides you with support around living with HIV?’, 78.1% indicated that a medical professional supports them with 48.6% friends, 31.4% counsellor/therapist, 24.8% family, 24.8% partner/spouse, 19% social worker, and 8.6% of participants indicating that no one provided them with HIV-specific support. 4.8% of respondents wrote in ‘peer support’ as an open-ended response to this question. When asked ‘where do you access HIV-specific support’, participants responded thusly: Figure 1: Where survey respondents access HIV-specific support

Among the respondents, 46% identified that they talk about cognitive health with their service provider whereas 54% do not. For those that do discuss cognitive health (n=50), 31.8% have been referred to HAND testing by their service provider and 68.2% have not. Overall, 82.8% of respondents were able to get help concerning cognitive health when they tried and 17.2% were not able to.

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Research Question #3 To what extent do people living with HIV understand the role of social workers, hospitals and clinics, and CBOs/ASOs? Participants identified many ways that social workers could provide them with support, and on defining social work’s role overall. People mentioned that social workers could be counsellors, housing workers, disability support workers, case managers, system navigators, resource and referral providers, generalists, and specialists. One interviewee succinctly encapsulated the sentiment that many respondents were sharing about social work. The response is as follows: “Well I’ve never dealt with psychiatrists before except like my first visit last week so I think it would be unfair for me to make any kind of statement. But social workers I find are more, what’s a good expression? Meat and potatoes. Right down there and they probably are more understanding and can link you to different resources.” (I14, 50-59 years old, male, French Canadian) For hospitals, over half of the respondents that requested support were seeking client-centred clinical care and testing for HAND. One respondent said “scientifically proven testing and counselling/advice based, on test results, on ways to obtain improvements to brain fitness.” (S065, 60-69 years old, female, white/ Canadian). Another respondent said that “currently, my health team does not do any pro-active monitoring for problems that may be slowly affecting me.” (S054, 50-59 years old, male, white/western European). Regarding specific supports from CBOs/ASOs, more than half of respondents requested group support and computer stations for brain training programs. Overall, respondents had lots of ideas about how CBOs/ASOs could provide HAND-related support. An example of this is the following response: “Well, I certainly think [ASOs] can have those education sessions where they bring in experts to talk about, what are the newest developments in HAND, what are they finding in HAND research – that’s education and information. But I would like to see more around applications towards the individual that is suffering from HAND and what programs could be put in place for them. Things like maybe brain…well, the testing, setting up or facilitating testing for people who haven’t been tested, re-testing to see progression or regression of those who have been tested. So I guess that would just sort of, you know not only just be through your family doctor but I think there should be a role through ASOs, maybe even having – I don’t know – groups or software, like I noticed people coming here to use the computers and maybe they could have those brain function software programs on computers, a special quiet area where it can be done. Yeah, or software that could be accessed on the website so people who can’t make it out of their homes can access it that way.” (I18, 50-59 years old, male, white/Canadian)

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HIV, SOCIAL WORK, AND BRAIN HEALTH: COMMUNITY REPORT

Conclusions and Recommendations Our findings indicate that people living with HIV are: a) Trusting of HIV-specific service providers including doctors, social workers, and other helping professionals b) Concerned about their brain health and predominantly coping independently with these concerns c) Waiting until cognitive concerns have impacted their activities of daily living before accessing neurocognitive screening for HAND It’s important to detect HAND as early as possible, to ensure support and treatment are effective. If you are concerned about your cognitive health, talk to your physician and/or service provider. Based on our research findings, social workers and other service providers should: a) Stay informed about signs and symptoms of HAND b) Utilize the therapeutic alliance to refer and follow-up about HAND testing and to identify coping strategies c) Maintain a holistic view, recognizing complicating factors and resiliencies in a person’s life Brain health can be difficult for people to talk about. It’s important that service providers offer safe, non-judgmental spaces for people living with HIV to discuss cognitive concerns.

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Resources Information about HIV and Brain Health 1. From the Ontario HIV Treatment Network (OHTN) – HEADS UP! Study: http://bit.ly/HIVcognitive 2. From CATIE - ‘A Mind of Her Own’ by Maggie Atkinson: http://www.catie.ca/en/positiveside/winter-2009/mind-her-own 3. From Alzheimer’s Australia - HAND Toolkit: https://vic.fightdementia.org.au/about-dementia/resources/dementia-and-chronic-conditions 4. From the United States’ National Institute of Health – HAND: http://www.nimh.nih.gov/health/topics/hiv-aids/hiv-associated-neurocognitive-disorders.shtml

HAND Testing Neurocognitive screening may be available in your area. Check with your physician. If you live in Toronto and are interested in being assessed for HAND, contact: Neurobehavioral Research Unit St. Michael’s Hospital Hours: Monday to Friday, 9:00am to 5:00pm Phone: 416-864-6060 ext. 6484 – Dr. Teri Sota

HAND Support Speak with your social worker or service provider about your brain health concerns. If you live in Toronto, Casey House and the Alzheimer Society of Toronto offer a group called Living with HIV and Memory Changes. To find out more about this group, contact Liz Creal, Social Worker, at 416-962-4040 ext. 204 or by email at lcreal@caseyhouse.on.ca.

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HIV, SOCIAL WORK, AND BRAIN HEALTH: COMMUNITY REPORT

Glossary ACT

AIDS Committee of Toronto

AIDS

Acquired Immune Deficiency Syndrome

ANI

Asymptomatic Neurocognitive Impairment (Form of HAND)

cART

Combination Antiretroviral Therapy (i.e. HIV medications)

CBO/ASO

Community-based HIV Organization/AIDS Service Organization

HAD

HIV-Associated Dementia (Form of HAND)

HAND

HIV-Associated Neurocognitive Disorder

HIV

Human Immunodeficiency Virus

MND

Mild Neurocognitive Disorder

PAR

Participatory Action Research

OHTN

Ontario HIV Treatment Network

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References 1. Grant, I., Franklin, D., Deutsch, R., Woods, S., Vaida, F., Ellis, E., et al. “Asymptomatic HIV-associated Neurocognitive Impairment Increases Risk for Symptomatic Decline.” Neurology 2014.82 (2014): 2055-062. doi:10.1212/WNL.0000000000000492 2. Hosein, S. “Treatment Update 203.” CATIE 26:4 (2014). 3. Spudich, S. “HIV and Neurocognitive Dysfunction.” Current HIV/AIDS Reports 10 (2013): 235-43. doi:10.1007/s11904-013-0171-y 4. Rourke, S., Terpstra, A., & Ibáñez-Carrasco, F. “Things to Keep in Mind when Living with HIV and Changes in Cognition.” Ontario HIV Treatment Network (2015). 5. Fazeli, P., Woods, S., Heaton, R., Umlauf, A., Gouauz, B., Rosario, D., et al. “An Active Lifestyle is Associated with Better Neurocognitive Functioning in Adults Living with HIV Infection.” Journal of Neurovirology 20 (2013): 233-42. doi:10.1007/s13365-014-0240-z 6. Stern, Y. “Cognitive Reserve in Aging and Alzheimer’s Disease.” Lancet Neurology 11.1 (2012): 1006-012. doi:10.1016/S1474-4422(12)70191-6 7. Greene, S., Ahluwalia, A., Watson, J., Tucker, R., Rourke, S., Koornstra, J., et al. “Between Skepticism and Empowerment: The Experiences of Peer Research Assistants in HIV/AIDS, Housing, and Homelessness Community-based Research.” International Journal of Social Research Methodology 12.4 (2009): 361-73. doi:10.1080/13645570802553780 8. Fine, M., & Toree, M. “Intimate Details: Participatory Action Research in Prison.” Action Research 43.3 (2006): 253-69. doi:10.1177/1476750306066801 9. Westhues, A., Ochocka, J., Jacobson, N., Simich, L., Maiter, S., Janzen, R., et al. “Developing Theory from Complexity: Reflections on a Collaborative Mixed Method Participatory Action Research Study.” Qualitative Health Research 18.5 (2008): 701-17. doi:10.1177/1049732308316531 10. Marshall, Z., Nixon, S., Nepveux, D., Vo, T., Wilson, C., Flicker, S., et al. “Navigating Risks and Professional Roles: Research with Lesbian, Gay, Bisexual, Trans, and Queer Young People with Intellectual Disabilities.” Journal of Empirical Research on Human Research Ethics 7.4 (2012): 20-33. doi:10.1525/jer.2012.7.4.20 11. Jacobs, G. “Conflicting Demands and the Power of Defensive Routines in Participatory Action Research.” Action Research 8.4 (2010): 367-86. doi:10.1177/1476750310366041

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HIV, SOCIAL WORK, AND BRAIN HEALTH: COMMUNITY REPORT

AIDS Committee of Toronto (ACT) 543 Yonge Street, 4th Floor M4Y 1Y5 T 416-340-2437 F 416-340-8224 W actoronto.org Charitable registration number: 11877 9024 RR0001