Mother of three, Monica Jam-Jam (43) from Soweto, has been living with HIV for 22 years. She says living with the disease is a rollercoaster – sometimes she feels motivated to take the medication, and other times she feels frustrated and in “a dark hole”.

“I struggle a lot with anxiety and sleep. I have to take sleeping pills to be able to sleep. At times I feel like my system is shutting down. I feel so depressed. When I take my medication, I feel like my joints are weak. It is very frustrating to take medication all the time, but we have no choice. We depend on it and it is depressing at times having to take pills every day,” she says.

According to Prof Jackie Hoare, head of the Division of Consultation-Liaison Psychiatry in the Department of Psychiatry and Mental Health at the University of Cape Town and Groote Schuur Hospital, people living with HIV are at particular risk of depression and anxiety, including a higher risk of suicide.

Hoare says poor mental health has been associated with HIV disease progression and poor adherence to treatment, making the treatment of mental illness alongside HIV key to strengthening HIV care and outcomes.

What drives the relationship between HIV and mental health?

According to Hoare, people living with HIV, who are vulnerable to depression and anxiety, frequently face significant individual, structural, social and biological challenges to accessing and adhering to HIV treatment.

“Depression and anxiety may exacerbate many of the social and economic barriers to accessing adequate and sustained healthcare, and are among the most challenging barriers to achieving sustained viral suppression,” she says. 

“In fact, the burden of depression and anxiety is likely to have been underestimated due to a lack of appreciation of the connectedness between mental health and HIV.”

Dr Marnie Vujovic, National Adolescent Technical Adviser, Care and Support at the Anova Health Institute, points out that the relationship between HIV and mental health is bi-directional. “For example, we see that depression increases the risk of HIV, and being diagnosed with HIV increases the risk of depression.”

Vujovic says various factors influence the relationship between HIV and poor mental health. “These can be categorised as health related (for example, mode of infection/behavioural or mother-to-child), health service related (for example, judgmental attitudes of healthcare providers), interpersonal (the availability of social support), individual and demographic (age, gender, poverty), and those related to parenting (for example, being an orphan).”

Dr Alexandra Maitso, a specialist psychiatrist based in Johannesburg, says mental health challenges may increase with significant life stressors. 

“The stress of living with a serious illness like HIV can act as one such trigger for mental health challenges in certain individuals and may also worsen the symptoms in someone with pre-existing mental health problems.”

According to Mandisa Mona, Training Coordinator for TB and HIV Care in the Eastern Cape, HIV and related infections can also affect the brain and the rest of the nervous system, which may then alter how one thinks and behaves. 

“Some medications used to treat HIV may have side effects that affect a person’s mental health.” 

She says the efavirenz-based regimen is an example. Efavirenz was part of standard first-line HIV treatment in South Africa but has been replaced by dolutegravir, which has fewer side effects. 

We need more than just medicine

Jam-Jam says it would help if nurses at the primary healthcare level could address mental health challenges. “You know, when you get to the clinic it is just, ‘wait for your folder’ and ‘get your medication’ and go home. No one really cares about how you are coping. If only it could go beyond that. 

“If only nurses could pick up mental health challenges when we come to collect our medications it will be better. That can be achieved if there was a little bit of time to chat and check in, but there is nothing like that. I think if we did that, half of our problems would be solved,” she says.

Peaceful Kgomo (26), who is living openly with HIV and is the founder of the Peaceful Kgomo Foundation, agrees. Her organisation helps people living with HIV.

“When we go to the clinic, it would mean so much more to have that time with a nurse and ask questions. We believe nurses know more than we do and they can help us, but there is no help. It is all about getting your medication and getting out. Nobody really takes time to ask if you are okay, or find out what is bothering you… all the questions, one has to battle with alone. 

“That causes a lot of stress, anxiety and depression for people living with HIV… and you know, when you are depressed, it is difficult to take your medication. I believe we should look after the mental health of people and it would be easier for people to adhere to their medication because they understand what is going on. Then, with adherence will come suppression of the virus and it will become undetectable,” she says.

The numbers and need for screening

Mona says studies have shown that between 20% and 60% of adults living with HIV suffer from some form of mental disorder, and they are not easily diagnosed at primary healthcare level. She suggests that the universal test and treat (UTT) strategy – and the pressure to offer antiretroviral treatment on the same day the client is diagnosed — may limit the healthcare worker’s opportunity to manage the client comprehensively.

“Recent studies have shown that mental health remains under-recognised and under-treated in people living with HIV in our primary healthcare facilities, and that is a cause for concern. 

“The findings reflect the importance of evaluating our patients, especially people living with HIV, for mental health problems, particularly in high-risk groups such as newly diagnosed patients presenting in a facility for ART initiation and patients with a CD4 count of 50 or less.”

Mona says ensuring the availability and use of a mental health screening tool at primary healthcare facilities can help improve diagnoses and management of mental disorders in people living with HIV.

Hoare agrees that depression and anxiety can be identified by all healthcare workers and should be screened for at all clinic visits. She says despite the well-established increased risk of depression and anxiety in people living with HIV, the findings of recent studies are that prevalence remains high.

“A mental health evaluation should form part of a thorough evaluation for HIV and can be done at a primary care level. These providers are able to manage common mental health problems and assess if there is a need for referral to specialist services or support services such as social work or psychology services. If a person living with HIV notices any change in their mental state, they should discuss this with a healthcare provider,” Maitso says.

Mental health and non-adherence

According to Professor of Psychiatry Jackie Hoare, people living with HIV who are vulnerable to depression and anxiety frequently face significant individual, structural, social, and biological challenges to accessing and adhering to HIV treatment. (Photo: Bienne Huisman / Spotlight)

Further unpacking the link between mental health and treatment adherence, Hoare says depressive symptoms are associated with subsequent viral non-suppression through its association with self-efficacy and antiretroviral therapy (ART) adherence. 

Sustained viral suppression is more likely among people living with HIV with no depression and good self-efficacy, she says. This self-efficacy relates to an individual’s mood – for example, if they feel depressed or not motivated or feel as if they’re not able to accomplish anything, even taking medication.

“There is also an association with higher stigma, increased levels of anxiety, sexual assault, intimate partner violence, recreational drug use and depression with subsequent poor ART adherence. People living with HIV and depression, and without disclosure of their HIV status to others, are also more susceptible to poor adherence. In addition, adherence to ART, symptoms of poor physical health and depression are strongly associated with functional limitations/disability in people living with HIV,” says Hoare.

But an HIV diagnosis in itself does not necessarily cause mental health issues, cautions Ani Shakarishvili, Special Adviser, Programme Partnerships at UNAIDS. She tells Spotlight that it is important, however, that people accessing HIV testing services and those living with HIV receive counselling and support. She says people living with HIV and depression are three times more likely to be non-adherent to ART compared to those who are not depressed.

Mental health in adolescents

Often children and adolescents living with HIV may face an increased burden of mental and behavioural health disorders. These children and adolescents may also experience multiple other psychosocial stressors contributing to their risk for mental health challenges.

One study estimates that about 20% of children and adolescents have a mental health disorder. Furthermore, the majority of adolescents with mental illness remain undiagnosed and untreated, and services are often fragmented.

“In addition to the direct brain impact of prolonged HIV infection, adolescents may also experience fear around disclosing their status to loved ones. They may feel guilt and worry about being judged; they may also fear rejection and abandonment as they are still depending on others for their livelihood. 

“They are at an age where they are more easily influenced by their peers and may be sensitive to perceived stigma and rejection by their peer group, friends and educators at school,” says Maitso.

Maitso adds that they may also have greater difficulty accessing health services (both HIV and mental health) and taking medication, especially if they do not want to disclose their status to their family. 

“The developmental period of adolescence is characterised by more impulsivity and difficulty assessing long-term risk, which may make engaging in healthy behaviours and adherence to chronic medication a significant problem in this age group,” she says.

The way forward

Maitso says the best way to achieve optimal health outcomes in HIV, both physically and mentally, include the early introduction of ART.

“The early introduction of medicine can assist with anxiety by facilitating a sense of looking after oneself and providing a sense of security. The early introduction of medication protects against severe neurological and cognitive symptoms, although milder symptoms may still occur. 

“Treating any identified mental health disorders is important to ensure an improved quality of life and an ability to cope and adjust – it improves adherence as well as physical health outcomes,” she says.

“There is a general need to invest in human resources for mental health and integrated service delivery,” says Shakarishvili. 

“Service providers, whether primary care providers, HIV service providers, nurses, midwives or lay health workers such as community health workers, need to be equipped to recognise symptoms of common mental health issues and conditions in people living with and affected by HIV (including key populations of men who have sex with men, people who inject drugs, sex workers, prisoners etc). 

“For example, service providers in primary healthcare facilities and in ART clinics can be trained to assess people living with HIV for signs and symptoms of mental health conditions and refer them to treatment and care if needed.”

Shakarishvili points out that the World Health Organisation – in their 2021 updated HIV service delivery recommendations – strongly recommends that psychosocial interventions should be provided to all adolescents and young adults living with HIV.

The national department of health did not respond to questions from Spotlight on HIV and mental health in time for this article. However, in a previous response to a media query from Spotlight, health department spokesperson Foster Mohale said training of key healthcare professionals to improve skills pertaining to early identification and management of mental disorders was under way. DM/MC

This article was produced by Spotlight – health journalism in the public interest.