Understanding the lived experience research priorities for improving health-related quality of life in people living with HIV with cognitive impairment

Figures & data

Table 1. Domains of HRQL in people living with HIV with CI [16,17].

Domain
(1) Physical function: Ability to perform normal activities of daily life
(2) Cognition: Cognitive symptoms
(3) Social connectedness: Ability and desire to form and maintain social relationships
(4) Stigma: experiences of stigma and discrimination (related to both HIV and CI) and impact on self
(5) Self-concept: Perception of self
(6) Acceptance and control over cognitive health: Acceptance and understanding of health conditions and sense of perceived control over health outcomes
(7) Physical and mental health and well-being: Broad impacts of physical and mental health conditions/concerns on evaluations of overall life appraisal

Table 2. Interventions recommended by people living with HIV and healthcare and third sector professional participants to support each identified domain of HRQL.

Domain/intervention suggestion	Quote
Physical function Peer support or signposting to services (including phone apps) that can provide assistance with practical matters, e.g. financial, housing, shopping Help to maintain employment and signposting to advocates which can support this Improved engagement with those supporting people with cognitive impairment (friends/family/carer)	‘There’s some things that I can’t do and it’s maybe outside their umbrella…things that I would have done before on my own, and I don’t know who to ask for help…not family, something like that peer support’ (Person living with HIV with CI participant) ‘Mapping of what’s available, services and activities that are available in the HIV sector and then looking at the competencies of those organizations to support people with cognitive impairment’ (Professional participant)
Cognition Clarity of information presentation: easy language/presentation, particularly of health information Practical advice on different strategies that can be used to mitigate the impact of CI (e.g. compensatory strategies) along with encouragement to undertake remediation activities (e.g. hobbies that require concentration) Cognitive rehabilitation to help cope with cognitive symptoms and improve functioning Staff training on indicators of cognitive issues and greater clarity around when and how to screen individuals with HIV for CI.	‘Routine…everyday they know all the things they need to do in the morning…little reminders, practical stuff…people come up with their own stuff as well which is brilliant…and it’s having time to explore that with someone’ (Professional participant) ‘Lego…it’s marvelous…I can relax…I can really concentrate on it for like an hour…it just makes me feel good about my memory – people should be told to do these types of things’ (Person living with HIV with CI participant)
Social connectedness Mapping of available services in local area Receiving and giving peer support Access and encouragement to attend social groups (safe/non-judgemental spaces), including non-HIV groups: supporting across sectors Support to re-engage socially following cognitive impairment diagnosis	‘It affects social life…sometimes I just can’t think what they are talking about or understand…I feel like I’ve lost the plot…it puts me off getting involved, then you know I feel left out’ (Person living with HIV with CI participant) ‘People are very isolated, they’re only contact is us [once a week]…a good peer support system where they receive and when they’re ready receive is huge for confidence, purpose’ (Professional participant)
Stigma Specialist memory clinics within HIV service encourage initial help seeking. Generic memory services considered heteronormative with no awareness of HIV and intersectionality. Continued support following cognitive impairment diagnosis Improved understanding that cognitive issues are multifactorial (i.e. not only due to HIV disease), cognitive impairment is not a type of dementia, and deterioration is not inevitable. Staff training: better understanding of indicators of cognitive impairment (e.g. non-adherence can be misinterpreted) and impact of cognitive impairment on different aspects of quality of life.	‘I really think a lot about the future…who will do everything for me when he’s gone…it’s only going to get worse…like nursing care when I’m older I’m anxious about being gay’ (Person living with HIV with CI participant) ‘People don’t always know they’ve got a problem, we need to play a bit of a detective role especially with the older patients…but knowing what to look for, what it looks like…sometimes behaviours can be misinterpreted and patients are labeled wrongly, that’s stigmatized and it delays getting to the bottom of it’ (Professional participant)
Self-concept Clearer information on diagnosis and prognosis (individuals reported thinking that they had dementia, resulting in significant concerns over their future and the care they can expect to receive as someone living with HIV) More information and assistance on developing strategies to enable continued functioning Positively framed information Help planning for older age Opportunities to socialise without other people living with HIV with CI of a similar age (particularly relevant for those in residential care settings)	‘Information you know…once they have an idea about what’s going on…the fact that things are quite stable, they can adapt and adjust and that’s quite powerful for them’ (Professional participant)’ ‘[about being] more optimistic, I get a kick up the bum if I start thinking about things that are going wrong…[I] need to think about what I can do…I think maybe that might be an idea for all of us to take on board’ (Person living with HIV with CI participant)
Acceptance and perceived control over cognitive health Clearer information on what cognitive impairment is and its causes in those living with HIV (to facilitate understanding of the condition) Information on how to support good cognitive health for all people living with HIV Clear and written management plan Collaborative development of strategies to mitigate CI impact and support personalised goals Staff with knowledge of cognitive impairment in the context of HIV	‘I can’t pinpoint why? Is it the medication, is it something else, so it would be useful to know [what causes this]’ (Person living with HIV with CI participant) ‘[I] just want more info, you get little bits here and there but its small, and I don’t fit in the normal dementia category, so finding stuff about that’s relevant to me and what I have going on is a pain’ (Person living with HIV with CI participant) ‘Something to help us really, so we can improve our memories. I don’t think I’ve had anything…I don’t know if there are things to help…like resources to maintain my cognitive abilities’ (Person living with HIV with CI participant)
Physical and mental health and well-being Continued support and signposting following diagnosis Clear, well communicated, and written management plan Access to different levels of information on cognitive impairment in people living with HIV Improved communication between services Mapping of local services and organisations Access to mental health self-help remediation strategies Knowledgeable staff	‘More information and awareness about the multifactorial sort of characteristics of cognitive difficulties and how people can help themselves…and other healthcare individuals …able to address those issues…could be incredibly useful…and has been really, really empowering’ (Professional participant)

Alford K, Daley S, Banerjee S, et al. “A fog that impacts everything”: a qualitative study of health-related quality of life in people living with HIV who have cognitive impairment. Qual Life Res. 2022;31(10):3019–3030.

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Alford K, Banerjee S, Daley S, et al. Health-related quality of life in people living with HIV with cognitive symptoms: assessing relevant domains and associations. J Int Assoc Provid AIDS Care. 2023;22:23259582231164241.

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Data availability statement

The data that support the findings of this study are available from the corresponding author [KA], upon reasonable request.