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"I'm Just Forgetting and I Don't Know Why": Exploring How People Living With HIV-Associated Neurocognitive Disorder View, Manage, and Obtain Support for Their Cognitive Difficulties
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EACS: A fog that impacts everything: understanding quality of life in people living with HIV and cognitive impairment - poor mental & physical function
- (11/06/21) This study described broad impacts on QOL across physical, psychological, and social functioning. In addition, the direct effects of their cognitive symptoms, experiences associated with living with HIV, and perceived control, along with acceptance of health conditions emerged as important factors impacting on QOL experiences.
EACS: Increased neurocognitive impairment and white matter damaged in young adults with perinatal HIV infection. A case-control study - (11/06/21)
Abstract
HIV-associated neurocognitive disorder (HAND) is common, but the lived experience of HAND is not well-understood. In this descriptive qualitative study, we explored how adults with HAND view, manage, and obtain support for cognitive difficulties. We interviewed 25 participants (20% female; median age = 51 years) who were diagnosed with HAND using neuropsychological assessment and a clinical interview. Semistructured interviews, co-developed with community members living with HIV, focused on how cognitive difficulties manifested and progressed, impacted well-being, and were discussed with others. We analyzed interview transcripts using a team-based, thematic approach. Participants described concentration, memory, and multitasking difficulties that fluctuated over time, as well as potential risk factors, management strategies, and psychosocial consequences. They reported they seldom discussed cognitive impairment with health care professionals, and that receiving a HAND diagnosis was validating, informative, yet somewhat disconcerting. Conversations between health care professionals and people living with HIV about HAND may provide opportunities for education, assessment, and support.
In this study, participants expressed not only relief and validation but also shock and doubt, in response to their HAND diagnosis...... our participants reported concentration, multitasking, and memory difficulties that varied in degree depending on factors such as stress, sleep, and mood, and produced negative emotional reactions including frustration, embarrassment, and worry.
Many participants recollected missing or forgetting meals, medication, and medical appointments. As one participant with MND described, "I had an appointment, a hearing test, a while ago . ."My memory problems interfere with my remembering to take pills, for example, and my remembering to eat." Most participants recalled one or more instances when their cognitive difficulties interfered with their health behaviors.......Participants often indicated they rarely discussed their cognitive difficulties with their primary care physicians and HIV specialists.
Cognitive symptoms
Participants reported concentration, memory, and multitasking difficulties that interfered with activities at home, school, and work. Most participants noted frequent challenges recalling words, names, faces, details about past events, and/or important dates. Many described themselves as easily distracted, and noted they often initiated new activities before they finished others. A student in her late 40s with MND said, "Concentration is hard. Distraction is easy. So it's like I'm doing two or three things at one time . . . The problem is when I get the job done . . . I don't remember why I did it or where I put things." In addition to interfering with daily responsibilities, a few participants reported that cognitive impairment posed risks to their safety. For example, a man in his late 50s with MND and who had worked in construction recounted,
Participants indicated that they had minimal discussions about their cognitive functioning with primary care physicians and HIV specialists. The development or identification of brief screening tools for HAND is necessary to increase access to cognitive screening and identify those who may benefit from further assessment and/or intervention. Participants in this study described concentration, memory, and multitasking difficulties, which were consistent with previous qualitative and clinical studies of cognitive function in people living with HIV. These clinical studies showed that individuals living with HIV tend to exhibit impairment on tests of sustained and complex attention (which may relate to concentration and multitasking, respectively; and memory, relative to age- and education-matched controls. Notably, past research suggests that HIV stigma can be a barrier to conversations with family, friends, and health care professionals about health problems and behaviors. A novel finding in this study, and contribution to the literature, was that conducting a comprehensive, "gold standard" neurocognitive assessment for the diagnosis of HAND, particularly ANI and MND, and sharing the results and implications of the assessment with participants, was favorably received and an important intervention to reduce worry and rumination. Furthermore, conducting a clinical interview was helpful for assessing the potential contributions of developmental or other comorbidities to participants' cognitive status.
Accordingly, participants in this study provided examples of felt stigma that prevented them from talking about cognitive difficulties with employers and friends..
"I'm Just Forgetting and I Don't Know Why": Exploring How People Living With HIV-Associated Neurocognitive Disorder View, Manage, and Obtain Support for Their Cognitive Difficulties
Introduction
HIV-associated neurocognitive disorder (HAND) is increasingly recognized as a concern among people living with HIV. HAND comprises three diagnostic categories, namely, asymptomatic neurocognitive impairment (ANI; characterized by mild cognitive impairments that do not interfere with daily functioning), HIV-associated mild neurocognitive disorder (MND; where cognitive impairments have a mild but noticeable or significant impact on daily functioning), and HIV-associated dementia (HAD; characterized by moderate to severe deficits that cause marked impairment in performing day-to-day tasks; Antinori et al., 2007). Despite the decline of HAD with the advent of HIV treatment (Heaton et al., 2011), milder forms of HAND remain common. Approximately 50% of people living with HIV are estimated to experience HAND (Clifford & Ances, 2013; Woods et al., 2009), making it an important health condition to examine in the context of HIV.
The clinical characteristics of HAND have been well-documented in neuropsychological studies (Cattie et al., 2012; Cysique, Maruff, & Brew, 2004; Gorman, Foley, Ettenhofer, Hinkin, & van Gorp, 2009; Woods, Moore, Weber, & Grant, 2009), which show that HAND may be associated with changes in learning, memory, attentional, and executive processes affecting health, quality of life, and work productivity (Doyle et al., 2012; Trepanier et al., 2005; Woods, Weber, Weisz, Twamley, & Grant, 2011). Despite clinical knowledge of the disorder, the lived experience of HAND has received little attention.
Two previous studies by Rourke and colleagues examined the lived experience of cognitive impairment in HIV: one with men and one with women (Gallagher et al., 2013; Hopcroft et al., 2013). Participants in both studies self-reported difficulties with attention, concentration, word-finding, and multitasking, and expressed ambivalence about the role of HIV in their cognitive challenges. Participants described that the severity of their cognitive difficulties fluctuated depending on their fatigue, stress levels, and depressive symptoms. Many participants noted resilient responses and optimistic attitudes regarding the daily challenges associated with their cognitive difficulties. They reported that friends with shared experience of cognitive impairment offered valuable psychosocial support. Some participants expressed concern about discrimination from friends and/or employers based on their cognitive difficulties.
Hopcroft et al. (2013) reported that certain triggers, including stress, anxiety, and feelings of depression, exacerbated the functional impact of participants' cognitive challenges. Men in this study indicated that older age was a protective factor affording them a relaxed outlook and reduced frustration in response to cognitive lapses. The authors recommended that triggers of worsened cognitive functioning be considered as candidate intervention/management targets. In their study of women living with HIV, Gallagher et al. (2013) suggested that conceptualizing cognitive impairment in HIV with a disability lens highlighted participation in parenting and work roles as central concerns of people living with the effects of HIV-related cognitive impairment. In both studies, Rourke and colleagues found participants endorsed consistent compensatory strategies, including to-do lists, planners, and calendars.
Thus, there is some emerging research that supports the utility of exploring the perspectives and experiences of people living with HIV and cognitive difficulties. Our aim was to build on this work to explore from the perspectives of men and women diagnosed with HAND how cognitive impairment affects health behaviors, interactions with health care professionals, and reactions to a neuropsychological assessment for a diagnosis of HAND, which included tailored performance feedback, recommendations, and resources.
Results
Twenty-five participants living with HAND (nine in Vancouver, 16 in Toronto) completed the qualitative interview and were included in the data analysis. See Table 1 for participant characteristics.
We identified five themes based on the interview codes and categories: (a) the natural history of participants' cognitive difficulties, including reported symptoms, their trajectory, and suspected risk factors (non-modifiable and modifiable); (b) participants' management strategies, categorized as compensatory (spontaneous and systematic) or remediation techniques; (c) the impact of cognitive impairment on participants' psychosocial well-being, including their emotional well-being and the role of stigma (felt stigma, self-stigma, and enacted stigma); (d) how cognitive challenges affect health and health care services (maintaining health behaviors and receiving health care support); and (e) how participants viewed and reacted to the HAND assessment process (receiving a HAND diagnosis, tailored feedback, and recommendations).
Natural History of Cognitive Difficulties
Participants described how their cognitive functioning manifested (cognitive symptoms), evolved over time (trajectory), and perceived risk factors (non-modifiable and modifiable) influencing their cognitive impairment.
Cognitive symptoms
Participants reported concentration, memory, and multitasking difficulties that interfered with activities at home, school, and work. Most participants noted frequent challenges recalling words, names, faces, details about past events, and/or important dates. Many described themselves as easily distracted, and noted they often initiated new activities before they finished others. A student in her late 40s with MND said, "Concentration is hard. Distraction is easy. So it's like I'm doing two or three things at one time . . . The problem is when I get the job done . . . I don't remember why I did it or where I put things." In addition to interfering with daily responsibilities, a few participants reported that cognitive impairment posed risks to their safety. For example, a man in his late 50s with MND and who had worked in construction recounted,
I lost my concentration and that's when things will start to fall apart . . . For instance I almost got—I was within the proximity of a concrete bucket that came down from a crane. I was within an arm's reach of the concrete bucket because I was having a discussion with my foreman . . . I didn't see it coming.
Participants suggested that there are persistent inconveniences caused by difficulties with concentration, memory, and multitasking that interfered with efficiency and fulfilling daily responsibilities, as well as potential dangers.
Trajectory
When asked to consider how their cognitive functioning had changed over time, most participants reported a decline in their cognitive functioning compared to months and years prior. Considering the trajectory of his cognitive difficulties over many years, a man who was in retirement and diagnosed with MND stated, "I think there's been a general . . . degradation may be too strong a word, but decline in that capacity." A middle-aged man with MND who was working part-time explained, "at first [my cognitive impairment] was pretty bad, but it's . . . leveled off." In contrast, another participant diagnosed with MND said his cognitive functioning was not "any worse than it has been over the years." Despite meeting criteria for HAND, not all participants claimed they noticed changes in their cognitive functioning since their HIV diagnosis.
Participants made statements about differences in their cognitive functioning "then" versus "now." A woman in her late 40s who was seeking employment at the time of her interview asserted, "I used to be a smart person until I [got] this illness [HIV]." Others cited a decline in specific cognitive domains; for instance, a middle-aged man who was discussing his responsibilities at work said,
[W]hen I'm writing out an order, everything is written down there. But I used to rely on my memory to remember . . . now I'm relying more on our manual or catalogue, which has all of those details written down and I just have to go back and check.
Participants also reported short-term fluctuations in their cognitive capacities. An older participant with MND described day-to-day fluctuations in his cognitive functioning that he referred to as "good days" and "bad days." He explained,
[On a good day] I function well. I don't forget a lot of things. I make social arrangements and do things with people. A bad day is where it might be that same scenario, but I start to forget little things and then I get upset that I forgot and I get into a bit of a spiral there. The first is still the most common.
Non-modifiable risk factors
Participants in this study speculated about causes of their cognitive impairment outside their control, including normal aging, long-standing psychiatric and/or intellectual conditions (e.g., attention-deficit hyperactivity disorder, learning disabilities), past substance use, and HIV.
Although most participants considered their cognitive impairment to be best explained by factors other than HIV, they often cited a combination of factors that included HIV. A student with MND noted, "Well I didn't realize it was a big problem until recently. I thought it was just me aging. I thought it was just a lot of stress causing it. So I wasn't talking to my doctor about it." This participant's reference to stress mirrored comments from several participants that both stable and dynamic factors influenced their cognitive functioning.
Modifiable risk factors
Participants perceived that factors beyond their control, such as HIV medications, stressful thoughts and events, sleep, and mood, also influenced their cognitive status. As an older man with MND explained, "I've been on meds for over two years now and I noticed, you know, I'm struggling to find words and things like that . . . the impact of just medication itself on peoples' cognitive abilities . . . especially the intense nature of the medications." Other participants suggested some, but not all, HIV medications may have hindered their cognitive capacities. A woman diagnosed with MND said,
I wanted to talk with my HIV doctor . . . maybe if she can change my medication maybe I'll be better. Maybe my memory will improve. Yeah, I still have to talk with her about it because I don't know the cause—if it's due to medication or it's HIV.
Participants recollected ruminative negative thoughts about their cognitive difficulties that increased their subjective stress and worsened their ability to think and remember. An older man in retirement reflected, "I find that there's a vicious circle. Like [one] afternoon I was getting more preoccupied and concerned with what I was forgetting and it was increasing the stresses I was feeling." Participants also recalled stressful life events that caused abrupt and significant cognitive problems. A woman diagnosed with ANI said,
[O]ne lady, she yelled at me because [while I was in a movie theatre] I didn't pick up the phone . . . She started yelling at me and cursing. After that I didn't know where I [was]. I was completely lost and it was dark on me. I asked the ladies who were there . . . where are we and did we watch the movie? I was completely lost. I asked them to "take me home because I don't know where I am and I don't know the way to my house."
Thus, in addition to the inherent stress of experiencing cognitive difficulties, participants reported that external stressors had a significant disruptive effect on their cognitive status.
Participants also identified poor sleep as a modifiable risk factor that influenced cognition. For example, a man in his mid-30s who was diagnosed with MND said,
I don't sleep well . . . I only sleep for three hours and then I will be up until morning. I cannot sleep like eight straight hours or six straight hours, only three or four. So I don't know if that [influences] my memory too. I think so.
Many participants reported a link between their past experiences of low mood with cognitive dysfunction. A man in his early 60s with MND asserted, "There's a strong correlation between mood—between emotions and the intellect . . . my experience [of] emotions provide almost like a fertilizer for the intellect."
Participants noticed ongoing fluctuations in the severity of their cognitive difficulties, and attributed the changes to a variety of modifiable risk factors such as HIV medication, stress, lack of sleep, and mood.
Management Strategies
Participants reported mental and behavioral strategies used to manage their cognitive difficulties, including compensatory and remediation approaches (Cicerone et al., 2011).
Compensatory strategies
Spontaneous
Many participants reported spontaneous compensatory responses to daily hassles attributable to cognitive impairment, including solution-focused and trial-and-error approaches. One participant summarized his response to such hassles as, "I know I can do this - let's rethink about what worked and what didn't work that [other] time that I can utilize for this time. That's the best way; it's turning it around."
Systematic
In addition to solution-focused and trial-and-error reactions, participants described systematic strategies, such as using paper-based and electronic aids for planning, scheduling, and reminders. One participant in her late 40s diagnosed with MND explained, "I will plan what I want to do for the next day. I always like to plan my stuff. I don't have a lot of stuff to plan but that's what helps me get through the day." In terms of processing and retaining information, another participant said she used patterns to enhance her attention and organization, like arranging materials "alphabetically, by numbers, or by color."
Participants indicated that physically salient prompts, reminders, and instructions to aid in day-to-day tasks were an asset. For example, two participants reported that remembering their daily schedule was easiest when they transcribed their schedule on a small notepad or piece of paper they stored in their pockets. One of these participants described,
I have to put things in place to remember. So sometimes I write it down and I have it in my pocket and I say to myself okay now when I go home I have to empty out my pockets. So I know that when I empty out my pocket and paper that I write on I'm going to remember that I wrote on that paper. Instantly I open it. But I have to put a lot of stuff in place in order to remember things.
Comparing paper-based and electronic scheduling strategies, a man in his early 50s with MND said,
I keep [a sheet] with me because as appointments come up I can write them right in. I just find doing it through the smart phone is a little more difficult. I did try using that app because I could link it up to alarms and whatnot. But it just wasn't working and I'm a technology smart person and I find it frustrating.
However, some participants relied primarily on electronic aids. A middle-aged man with MND said, "I have calendar reminders and stuff. Whenever I bring my bike I have to ping it [track its location using GPS] because I've left my bike and not remembered where the bike was before, that kind of stuff."
Remediation strategies
Participants reported engaging in activities that may have helped maintain or improve their level of cognitive functioning, such as mental exercises, maintaining a healthy diet, physical exercise, and mindfulness. In terms of mental exercises, a man with severe cognitive impairment explained, "If someone says a word and I don't get it . . . I say it a couple times until my vocabulary gets bigger and bigger." Another participant with MND suggested that "trying to eat as health[y] as [he] possibly can" benefited his cognitive function. Regarding physical exercise, a man in his late 40s with MND said, "Well, I think I find that, you know, like exercise, a walk, the fresh air . . . getting some air into your lungs, wakes you up and gets your brain going." Finally, a man of the same age reflected, "I meditate quite a bit. I think that is probably the thing that helps me most." Most participants outlined one or more activities they engaged in that may have been considered remediative for brain health.
Psychosocial Well-Being
Participants described several impacts of HAND on psychosocial well-being, including their emotional well-being and stigma, and positive and negative dimensions of social connectedness.
Emotional well-being
Many participants reported that experiences of frustration, embarrassment, and worry associated with cognitive difficulties and potential decline, were common for them. A participant in his late 40s diagnosed with MND stated, "[Y]ou get kind of frustrated and pissed off at yourself because you forgot." Referring to his memory difficulties at work, one participant disclosed,
[Not remembering is] embarrassing for me because you know I would get frustrated because I couldn't remember and I didn't want to ask [my supervisor] again because he was so tired of people being around him and not remembering. I don't know if he had a lot of [employees] that were positive or whatnot.
Another participant explained, "There are times when I notice [my cognitive difficulties] more than others . . . [for example,] in a situation where it can be embarrassing to forget something." Frequent worries were also reported, such as one participant who said he worried that "blanking" and having "intervals in [his] conversation" signaled cognitive decline. However, worry may have been a motivating factor for one participant who said, "I worry about [my memory getting worse] . . . That's why I try to read every day so that my memory won't get so bad and then I try to do [cognitively challenging] games. That helps me a lot too."
Stigma
In addition to the frustrations, embarrassment, and worries participants described, they also noted problems related to stigma of cognitive impairment. Participants in this study described dimensions of stigma, including felt stigma, self-stigma, and enacted stigma (Corrigan, Larson, & Ruesch, 2009; Gray, 2002), regarding cognitive impairment and HIV that affected them in social and work settings.
Felt stigma
Several participants reported not speaking up or asking for help when their cognitive difficulties caused problems because they were concerned others would judge them negatively. For example, a man with MND stated that when he lost track of conversations, he "put [on] a brave face . . . [and] a big smile" and "laugh so they [wouldn't] know" he was experiencing cognitive difficulties.
Self-stigma
Some participants made critical self-judgments about their cognitive status and how it could impact their futures. A woman diagnosed with ANI said,
I don't want to get dementia. If I do and people know this already, if I do, I'm going to take myself out because like who wants to sit around watching somebody lose your mind. I think that's very selfish of people and I don't like to do that.
Other participants made similar comments, such as a woman with MND who said, "I don't even want to see myself becoming dependent on people or even my kids to have to take care of me or having to remain on social assistance."
However, some demonstrated contrasting perspectives, such as a man with MND who asserted,
Like, am I going to be like you see people on TV and whatnot going through dementia and whatnot? I think if I've got the right team that will work with me then it won't be as . . . You know if I notice a big difference, yes, I will definitely put my hand up and ask for help.
Enacted stigma
Participants described criticism they had received from others in response to their attentional and memory lapses. A man with MND said his children think, "When dad forgets, he's stupid." A woman in her early 50s with MND recalled,
[M]y daughter criticized me about the way, you know, I behave. I behave like I'm not in my sound mind or I can't remember things. They treat me like I'm not competent enough to be with their children alone or for me to take them out . . . It's not like I'm out with the kids on the subway and then suddenly I remember "Oh, you're with me." That doesn't happen.
Social connectedness
HAND also influenced social well-being through its influence on social connectedness. Many described friends or family as a source of shared experience and practical support. A man in his mid-50s diagnosed with MND said, "I'm surrounded with people [living with HIV], so they relate to me and I relate to them . . . we look out for each other right, which is a good thing." Another participant stated that he and his friends would "laugh about [their] cognitive difficulties" because they were all "going through the same process." Similarly, one participant reported that his wife helped him cope with his memory difficulties by "laugh[ing] about [his forgetfulness]" in a light-hearted manner.
Participants provided several examples of how their friends helped them manage their cognitive challenges. A man with MND described,
[For] important things like appointments, I rely on my friend. He's got a chart for me, he's got a calendar. He's very practical in what he does, which I admire him for . . . I kind of trust him. He's got a couple of files with my name on it. Important papers that I'm going to lose or I don't want to lose, I give it to him. It's in my file.
Other participants described feeling that their cognitive impairment prevented them from forming and maintaining friendships, which reduced their self-esteem. A man in his early 60s diagnosed with MND noted, "It's just people talk to me and I lose interest, no eye contact. One time I did that to my friend who was standing there. I was just staring at him. Sometimes I don't feel adequate . . . because I'm losing friends and stuff."
Thus, while many participants found significant others and friends helpful for coping with cognitive impairment, some asserted the impairments jeopardized their social networks.
Health and Health Care Services
Maintaining health behaviors
Many participants recollected missing or forgetting meals, medication, and medical appointments. As one participant with MND described, "I had an appointment, a hearing test, a while ago . . . It took me three times before I could get in to see the doctor. I kept forgetting the appointments, even though I had a reminder." Another with MND said, "My memory problems interfere with my remembering to take pills, for example, and my remembering to eat." Most participants recalled one or more instances when their cognitive difficulties interfered with their health behaviors.
Health care support
Several participants in our study recalled receiving valuable support from community-based health care professionals, especially with medical appointment reminders. For instance, a man diagnosed with MND said, "I didn't miss any of [the Hepatitis C specialist's] appointments because [the support staff] . . . will call me that morning for a reminder." Another recounted a health care support staff member helping him "repair damage" done with a medical specialist when multiple appointments were missed.
Participants often indicated they rarely discussed their cognitive difficulties with their primary care physicians and HIV specialists. When asked if he had spoken to a health care professional about his cognitive challenges, a man with MND responded, "I don't think so, no. That's sort of something I've always thought I'd have to take on myself." Those who reported having the conversations about cognitive difficulties indicated that the conversations were limited. As a man in his late 40s recounted, "[M]y family doctor . . . might be the only person I would have talked to about memory, but nothing extensive or anything." Alternatively, another man with MND recalled saying to his health care professional, "I have . . . lost some valuable things and I don't know why . . . I just want to know if it's HIV."
Some participants reported concern and guilt about how their missed appointments were interpreted or handled by their health care professionals. For example, a man in his early 50s with MND asserted, "the doctor is not going to put up with no-shows." A woman with MND explained,
If I forget about my doctor's appointment I feel bad. It's like I did it intentionally like I didn't want to go to the doctor. I make sure that I go straight away and tell them that you know what I forgot that I had appointment at this time, that's why I'm here.
Rather than calling them that I forgot my appointment. So they can see me physically.
Other participants asserted that appointment attendance should be a shared responsibility between patients and health care professionals. As a woman with ANI said, "I get frustrated because, it's like, you've got to be at this appointment and we're not going to chase you down for this appointment. He gets like that and it's a conflict sometimes."
Overall, participants emphasized that community-based health care professionals offered valuable support to help them manage their cognitive impairment, and that they infrequently raised concerns about cognitive functions with their primary care physicians or HIV specialists. Furthermore, participants described worries and frustrations about missing medical appointments, especially specialist appointments.
HAND Diagnosis and Feedback
Reaction to HAND diagnosis
Participants' responses to receiving a diagnosis of HAND varied. Several participants reported that a diagnosis of ANI or MND relieved their anxiety and concerns of having dementia. For example, when we asked a woman with ANI what she found most helpful during the neuropsychological assessment and feedback session, she said, "[The feedback session] relieved a lot of things that were on my mind . . . one of my worst fears is having dementia." A man in his early 60s with MND stated that he appreciated receiving an explanation for his cognitive difficulties and the knowledge that his memory was not "disappearing for no reason." However, some participants found the diagnosis disconcerting. A woman diagnosed with MND was surprised but accepted that she met criteria for HAND. She said,
It was scary to know, scary to find out for me in a way . . . It just kind of shocked me. But I have to realize now I have to accept it, because you know, I am getting older and I know there's going to be some issues down the line for me forgetting and stuff because that's the way it is. It kind of opened my eyes a little bit.
In contrast, a man diagnosed with MND said, "I just don't want to accept that I'm suffering memory loss." Thus, some participants who had pre-existing concerns about their cognitive functioning found the assessment and diagnosis provided relief, whereas those who reported little or no knowledge of their impairments experienced some shock and difficulty coming to terms with the new diagnosis.
Receiving HAND assessment results and recommendations.
In addition to their HAND diagnosis, the clinical neuropsychologist gave participants tailored feedback regarding their relative strengths and weaknesses on the cognitive tests, as well as educational information about the causes, clinical characteristics, and management of HAND. During the qualitative interviews, we asked participants to comment on what they perceived to be the benefits and drawbacks of the tailored assessment feedback and related resources. Speaking generally about the feedback meeting, a middle-aged man diagnosed with MND reported,
Well, like, it wasn't fun, right, talking about these issues—but, you know, I don't usually talk about things at all with other doctors. It gave me an opportunity to put this out there and just see the reaction. I got good feedback. I'd say it was a very worthwhile experience.
As noted above, many participants had not previously discussed their cognitive concerns with health care professionals. For this participant, as well as others, disclosing to a health care professional that he was experiencing cognitive difficulties, having his cognitive functioning assessed, and receiving feedback about his cognitive status were of significant benefit. As noted earlier, several participants explained that the clinical neuropsychologist validated their concerns about cognitive impairment and confirmed for them that their cognitive challenges were worthy of attention from a health care professional. A man diagnosed with MND reported feeling as though "somebody was actually paying attention to what we were going through."
Participants also reported that the meeting with the neuropsychologist increased their self-esteem. When she reflected on the neuropsychologist's feedback regarding cognitive tests she performed well on, a woman with ANI noted, "[The feedback] made me more positive in a way, that, you know what, I'm not stupid." Thus, participants indicated that positive feedback was a source of increased confidence and encouragement when receiving a HAND diagnosis.
Participants reported some limitations of the assessment feedback session, like the technical terms used to describe cognitive capacities. A woman diagnosed with MND explained,
I just didn't understand [the results of the assessment]. I didn't know what she meant by [problem solving] . . . She said five things. Problem solving, speed, something like that and there's something wrong my fingers, the tips, which I believe is true, and I forget the other two.
In summary, participants found that once they disclosed their cognitive challenges to a health care professional, had their suspected impairments confirmed, and received encouraging personalized feedback about their cognitive test results, they felt relieved and validated.
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