HEADS UP! Study (2015-2016)


IMG_3979HEADS UP! (2015-2016) is a CIHR and REACH funded study bringing together members of the community, health care providers, and researchers to generate and translate knowledge about HIV-associated neurocognitive disorder (HAND).

HEADS UP! (1) explored the lived experience of HAND using ethnographic research methods to help inform clinical definitions, guidelines and interventions for HAND; and (2) provided participants (and their care providers) with knowledge about their cognitive status—including strengths and weaknesses as well as compensatory and restorative strategies to manage cognitive impairments, if present.



Little is known about how individuals with HAND view, cope with, and manage changes in memory, attention and thinking in day-to-day lives. We explored the qualitative experience of those living with HAND. The goal of this study was to explore the trajectory and consequences of HAND and coping strategies.


Twenty-five diverse adults living with HAND were interviewed by the Research Coordinator and Principal Investigator between January and October 2015. Patients who receive HIV care and support services at Casey House, St. Michael’s Hospital (Toronto) and The Dr. Peter Centre (Vancouver) were recruited for HEADS UP! Study.

Questions prepared by study investigators and trained peer researchers focused on: (1) the trajectory of HAND; (2) HAND’s effects on self-confidence, mood and resilience; and (3) the role of HAND in interactions with friends, family and healthcare providers. Participant interviews were transcribed verbatim and analyzed: the first available set of 10 transcripts was coded by one academic and one PRA.


Codes included “How HAND happens to me over time” (trajectory and landmarks), day to day impact of HAND: challenges, changes, experience of HAND; emotional impact (stigma, embarrassment, loss of self-efficacy); practical and material impacts of HAND (e.g., job loss); strategies (actions taken over time such as having an exercise regime) and tactics (immediate actions such as “laughing it off”) used to manage cognitive difficulties; impact of HAND in interactions with health care providers (e.g., doctors, nurses, etc.); impact on social participation (e.g., avoiding friends or groups when they notice forgetfulness or confusion); and integration of HAND diagnosis into one’s identity.

The themes derived from HEADS UP! interviews included:

(1) The lived experience and emotional impact of cognitive impairment: Participants described experiencing confusion, anxiety and frustration as a result of their cognitive impairment, as well as fear of losing their identity and living with the stigma of cognitive difficulty added to HIV. Other consequences of HAND included material losses (e.g., misplaced cheques), missed appointments, and medication dosage errors or misses.

(2) Strategies used to cope with cognitive impairment: Participants reported HAND-related adaptive strategies (e.g., de-cluttering one’s space, seeking memory-aid support from friends and healthcare providers about appointments and even personal memories) and maladaptive strategies (e.g., long-term use of substances to increase attention or achieve forgetfulness).

Strategies for managing cognitive impairment varied according to participants’ strengths; those who are tech-savvy use technology for reminders, alarms, appointments, and important dates. Visual learners keep reminders and appointments on bulletin boards and/ or large calendars. Participants described helpful in-the-moment tactics such as “laughing it off” (using humour to cover/dismiss symptoms).

(3) Outcomes of the HAND assessment de-briefing with a clinical neuropsychologist: When speaking about the HAND assessment feedback session with a clinical neuropsychologist, many participants expressed relief at not have severe cognitive impairment and/or a neurological condition such as Alzheimer’s disease or other dementia. However, participants expressed uncertainty about the future regarding the progression/prognosis of their cognitive impairment and what supports will be needed.

(4) Interactions with healthcare providers and caregivers about HAND: Participants’ greatest supports are healthcare providers and intimate partners (although families can be harsh on participants’ forgetfulness or lack of attention and sharpness) and yet they report having few explicit conversations about their cognitive functioning as a potential HIV symptom. This is a barrier to interventions for and prevention of HAND-related cognitive decline. With regard to health systems, there may be systemic gaps in patient-support for those experiencing cognitive impairment, such as not calling to remind participants about important appointments.


Click here to download our non-clinical brochure: it describes some key info. about HIV-associated neurocognitive disorder (HAND) and also includes non-clinical tips to support those living with HAND.

Click here to see our poster on results and poster on methods presented at the 25th annual conference of the Canadian Association for HIV Research (CAHR) in 2016.

HEADS UP! also produced the testimonial/information video you can watch here.

HIV and Your Brain

Brain health is an important part of our overall well-being. Our brain is as important as all the other organs in our body, like our hearts, kidneys, lungs and liver. Good brain health helps us process words and tasks efficiently, feel sharp-minded, be good problem-solvers, pay attention to people and things we value, and remember important names and dates. HIV can affect the brain and have a negative impact on cognition, which is the ability to focus on tasks, remember names and events, and think as fast as we can when making choices. The virus can cause HIV-associated neurocognitive disorder or HAND, which slows cognition, making it harder to find words or remember things.

In the video below, Francisco Ibanez-Carrasco interviews an esteemed panel of researchers about recent studies of HIV-Associated Neurocognitive Disorder.

Additional Resources:

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