| Forgetting is a socially acceptable shorthand description of a complex phenomenon |
Health care and social service providers can be sensitised to the fact that ‘forgetting’ is an expectable aspect of managing ART over the long term, because patients use ‘forgetting’ as a way to manage ART and living with HIV Providers can help patients unpack the precise meaning of and factors underlying forgetting (e.g. true forgetting, forgetting due to ambivalence about ART, semi-intentional missed doses, intentional missed doses, life context prevented ART doses being taken, the patient does not entirely know why doses were missed, etc.) Providers can understand that factors driving forgetting may not be obvious to PLWH; in other cases, forgetting may be an intentional or semi-intentional means of HIV management PLWH may experience shame or other negative emotions associated with forgetting, but providers can cultivate a non-judgmental environment by accepting forgetting as one expectable aspect of managing ART over the long-term |
| Optimal adherence to ART is rarely natural, easy, or permanent |
In the context of highly efficacious and tolerable ART regimens, even sophisticated and well-intentioned providers may become desensitised to how challenging maintaining optimal ART adherence can be for many patients Assumptions in clinical settings that optimal ART adherence will necessarily be sustained can be challenged, to reduce socially desirable responding from patients and to foster open discussion of barriers to ART adherence and reasons for forgetting Policies and practices in clinical settings can and should support the range of psychosocial and structural factors that underlie optimal adherence to thereby reduce ‘forgetting’ (e.g. stable housing, harm reduction) |
| PLWH’s perspectives on living with HIV and taking ART play a role in forgetting |
Acceptance of an HIV diagnosis can take time and difficulties coming to terms with the reality of the diagnosis may contribute to forgetting; providers can query patients about their experience of living with HIV Counter-narratives about HIV and its treatments interfere with motivation to adhere to ART, but there are few places where patients can discuss counter-narratives. Providers can introduce the topic of counter-narratives (e.g. HIV was man-made to exterminate populations of colour, there is a cure for HIV that is being withheld, ART is toxic) and explore as appropriate but without attempting to change patients’ minds about the counter-narrative. Negative emotions about living with HIV and taking ART, including fear and distrust of ART, may be potent and contribute to forgetting. Distrust and fear of ART are typically more salient among African American/Black and Hispanic/Latino populations compared to White populations, grounded in historical events and present-day structural racism |
| Trauma is endemic and contributes to forgetting |
Trauma is endemic among those living in poverty, and HIV infection itself is often experienced as trauma Taking ART is an emotional reminder that one is living with HIV infection and these emotions can be challenging to tolerate, particularly when practical or psychosocial stability is disrupted Trauma-informed care approaches can augment existing care models |
| Intrinsic motivation for ART is fundamental, but may be overlooked |
Providers may assume PLHW have sufficient intrinsic motivation to take ART when prescribing, but it may not be; low levels of intrinsic motivation for ART can contribute to forgetting Intrinsic motivation is necessary but not sufficient; habits along with social and structural supports can prevent or reduce forgetting |
| Certain life conditions make missed ART doses less likely |
A range of life circumstances and psychosocial social conditions make forgetting less likely including: stable housing, a strong social support network, acceptance of HIV status, emotional readiness for ART, and good management of mental health and/or substance use concerns PLWH from low socio-economic status backgrounds are commonly unemployed, because of health or in order to retain safety net benefits. Yet, employment creates structure and routine, which can reduce forgetting. Community-based and AIDS service organisations provide vital structure, but more roles for PLWH are needed to provide structure and generativity (e.g. peer mentorship programmes) |
| HIV care providers may benefit from training to elicit the underlying causes of forgetting |
Short health care encounters impede providers’ abilities to understand what their patients mean by forgetting to take ART Patient-centred medical care can improve clinical encounters, including assisting patients with understanding what is meant by forgetting to take ART and the factors that underlie forgetting Approaches such as motivational interviewing show promise in clinical care encounters to engage patients and guide them toward optimal personal health care decisions Social workers and other service providers who interface with patients can provide services that complement medical care, and elicit the various meanings of forgetting to take ART |
