Studies have found higher rates of depression, anxiety, post-traumatic stress disorder, insomnia, addictions, self-harm and suicidal thoughts, and enduring mental health issues among people living with HIV compared to the general population.
The reasons for this are complex and include: a higher risk of HIV acquisition in people with pre-existing mental health difficulties; traumatic life events and substance use; the impact of living with a stigmatised, chronic medical condition; and potential side-effects of antiretroviral treatment (either causing unpleasant physical health symptoms or neuropsychiatric interactions directly causing or exacerbating mental health symptoms).
Some challenges will be relevant to all people living with HIV, whilst others affect specific key populations (e.g. black MSM, trans women, drug users, those in prison, sex workers and people living with disabilities).
Not only does mental health negatively affect quality of life, it can create a vicious cycle as it can complicate clinical care (e.g. disengagement from healthcare systems, non-adherence to ART), thus compromising physical health and heightening the risk of onward HIV transmission. However, recent audits have found variability in the extent to which mental health screening is conducted, and concerns regarding access to relevant mental healthcare services when detected.
Therefore, the assessment, management and promotion of mental health for people living with HIV is of critical importance, and is recommended following diagnosis and other events known to trigger or exacerbate psychological distress or cognitive difficulties (e.g. significant changes in physical health, starting or changing ART, difficulties with adherence, re-engaging with clinical care after being lost to follow-up, significant life events such as a difficult relationship break-up, experiencing stigma or violence, losing benefits, or sudden death of a loved one) and on an annual basis thereafter.
Assessment involves regular screening for common mental health difficulties (by clinical questioning and/or specific and validated measures) with appropriate and timely escalation to relevant services if concerns are noted, utilising the stepped-care approach (Figure 1). Clear referral pathways with effective and defined communication channels should be established between HIV services and those providing mental healthcare, to minimise fragmentation, with the person living with HIV included in communication whenever possible. Any possible barriers to referral should also be anticipated and addressed (e.g. language and translation needs, geographical residency of person and service, the service’s views on working with dual diagnosis, for example, drug use).
Specific screening tools should not be seen as a replacement for an individual discussion about mental health with a specialist HIV consultant or GP, with whom the person living with HIV may have a long-standing relationship. Equally mental health can fluctuate or be episodic, and many screening questions relate to a specific and recent period of time which may not coincide with a person’s difficulties. Conversely, however, being asked ’How are you?’ will not necessarily prompt a discussion of depression, anxiety, insomnia, cognitive issues, PTSD and so on. Therefore, mental health screening can help clinicians and people living with HIV to identify a need and refer to appropriate support.
Furthermore, some people living with HIV may not consider accessing mental health services even if they identify as being depressed or anxious. This may be because they perceive this level of emotional (ill) health as expected, and may not necessarily have an awareness that it could be improved with interventions. There can also be stigma associated with accessing mental health services, especially in some cultural groups such as black and minority ethnic communities and men, and so for these reasons people living with HIV may under-report their difficulties in consultations.
There is a recognised need for national standardised screening measures for mental health; however, this is not currently possible due to the lack of evidence. Clinical opinion will need to inform the selection of tool(s) used, which may vary depending on the person living with HIV, cultural differences, and norms available. A non-exhaustive list of some commonly used measures is provided in Appendix 6.
The management of the issue(s) present will depend on the severity and complexity of the mental health difficulty, evidence-base, and the person’s preference, and should be provided by appropriately qualified providers following relevant clinical guidance.
It is beyond the remit of this Standard to explore all potential mental health difficulties and the HIV-specific evidence base (or lack thereof) for each. Rather, good care should be both culturally competent with respect to the unique facets of living with HIV, account for patient choice, and be evidence-based. This may include both long-established psychological and psychiatric interventions as well as emerging therapies (e.g. mindfulness-based cognitive therapy and prevention of depressive relapse or recurrence, and mindfulness-based stress reduction and psychological and HIV health outcomes). This paradigm is known within psychological therapies as the ‘what works for whom’ approach.
If the mental healthcare professional is not based within the HIV service, they should access research literature, training, consultation or supervision with HIV-specific knowledge and cultural competencies (e.g. neuropsychiatric side-effects of ART as a differential diagnosis, drug–drug interactions between ART and psychotropic medications, stigmatised minority groups).
When working with people living with HIV careful attention should be paid to their lifespan stage (e.g. adolescence, young to middle adulthood, older age, end of life) and personal demographics (e.g. gender, race and ethnicity, migration status, religion and sexual orientation) as these, and the interaction between them, may serve as either resilience or stress factors for their psychological well-being and mental health, and affect both how they understand and access services. As such, any biopsychosocial assessment should formulate lifespan and demographic variables as part of person-centred care.