Conversation, compassion and community: Planning for healthy futures with HIV


Shutterstock studios – ‘HIV in View’ gallery

Shutterstock studios – ‘HIV in View’ gallery

HIV has changed. As a result of advances in antiretroviral therapy, many people living with HIV, with access to treatment, are now living longer, healthier lives than ever before. Yet, with these extended lifespans comes the importance of continuously re-evaluating current and future treatment needs as they evolve, based on individual risks of comorbidities, co-existing conditions, and concomitant medications. As such, there is a need for healthcare providers to engage in comprehensive discussions with people living with HIV about wider lifestyle and treatment considerations, including psychosocial factors, technology barriers, and how medication needs may evolve over a lifetime.

One such lifestyle consideration that ought to be continuously monitored as part of a clinical review is loneliness. Social isolation and loneliness are well documented to have a considerably negative impact on health and wellbeing.1 Given the recent COVID-19 lockdowns, these experiences and emotions of isolation have risen amongst many, and more prominently so amongst people with health conditions, including people living with HIV2, who may now have less access to their healthcare professionals or more compromised dialogues with them, lacking that all-important face-to-face contact during medical consultations.

Communication is key; the role of telehealth and open dialogue in optimising health outcomes

“People living with HIV are ignoring really serious symptoms for the fear of COVID,” says Samantha Dawson, who works with UK HIV patient group Body Positive and is living with HIV. “Not everyone is comfortable using platforms like Zoom [to engage with their healthcare providers], and some do not even have the internet or a simple phone.” This is particularly worrying for the growing numbers of older people living with HIV, due to high rates of co-morbidities which, in addition to leading to poorer health outcomes, places them in the high-risk categories for poor COVID outcomes.3,4

HIV specialist Dr Maile Young Karris, MD, of US San Diego Medical Centre, adds that the shift to virtual appointments between patients and their healthcare providers during the pandemic is “especially hard if you don’t have an established relationship”. For many people living with HIV and others with conditions leading to weakened immune responses, the pandemic has introduced new barriers that may prevent open interactions with healthcare providers, including the introduction of social distancing and restrictions, and breakdowns in social support.4

Ensuring healthcare providers can identify challenges faced by people living with HIV is consequently paramount. “If people feel safe,” Dr Karris explains, “patients are more likely to be honest. For instance, my patients who are substance users, they know I don’t judge them for their substance use, and they are honest with me about it. It shows the importance of knowing what’s going on with your patients, particularly as it relates to adherence to HIV medications and engagement in care.”

Research from one of the largest, global, HIV patient-reported outcomes studies to date, the Positive Perspectives study, demonstrates a strong link between high engagement with healthcare providers and positive self-reported health outcomes for people living with HIV, yet the study results also show that many people living with HIV do not feel comfortable raising important treatment concerns.5 As many as 1 in 4 (638/2,389) participants reported a barrier to communication as they feared being labelled a ‘difficult patient’ by their healthcare providers.5

Dr Karris highlights the important role healthcare providers play in creating environments where people living with HIV are empowered to actively and openly discuss their healthcare and treatment. When considering how to make the most of often time-limited virtual consultations, two-way communication between people living with HIV and their healthcare providers may encourage joint decision-making and support improved quality of life and health outcomes. High-quality communication with healthcare providers is associated with people living with HIV reporting treatment satisfaction and adequate understanding of their treatment, and perceiving their treatment needs as met.5

Addressing loneliness; bridging the gap between people living with HIV and healthcare providers

“Loneliness can impact clinical outcomes in a number of ways,” indicates Dr Karris. Loneliness has been linked to chronic health conditions including hypertension, stroke and diabetes, and to an increased risk of mortality.6Very few people will be able to tell you they are lonely, so as a clinician, you have to be aware of cues and early signs,” Dr Karris says. “A common cue I’ve identified is when patients would tell me three months was far too long to wait until their next appointment. These were all people who are well-controlled and don’t have comorbidities, and I began to realise these were the people who were most lonely. They simply wanted a place where they could continue to connect with people,” adds Dr Karris.

This need for regular touchpoints between patients and clinicians is further demonstrated in the Aging with Dignity, Health, Optimism, & Community (ADHOC) study’6, involving people living with HIV in the US over 50 years old, highlighting the importance of not just ensuring standard of care, but also prioritising emotional wellbeing.6

To support healthcare providers in identifying loneliness, Samantha Dawson emphasises the value of strong relationships with community healthcare workers. “Community HIV workers are the bridge between people living with HIV and the clinics,” she says, “They often identify people in the community who are experiencing loneliness or being left without connection or care, before clinics can.”

Looking at the bigger picture: considering treatment over a lifetime

While HIV is now effectively managed as a chronic health condition for many people living with HIV receiving treatment, many still have concerns about taking treatment over a lifetime.7 The Positive Perspectives study revealed that 57% (1,195/2,112) of participants worry about taking more medicines as they grow older.7

The study also noted that 82% (1,731/2,112) of the people living with HIV who participated take at least one non-HIV antiretroviral pill daily, with self-reported optimal overall health, including mental, sexual and physical health outcomes, almost 20% higher among those reporting no polypharmacy*, regardless of viral status.7

For Samantha, taking multiple pills is a concern. “It may be ok for the people who are able to take the one pill combinations, but I have been unable to yet, so have to take three HIV tablets. Then, as you get older, the fear of co-morbidities and having to take extra medications for my other conditions just means more tablets and more [strain] on your body. In total, I take 13 tablets a day, for HIV and other conditions.”

More than 68% (1,425/2,112) of people living with HIV who participated in the Positive Perspectives study worry about the long-term impact of HIV medication.7 The results emphasise the importance of people living with HIV feeling empowered to initiate open dialogue, especially given one-third of people with significant treatment-related concerns reported being uncomfortable discussing these with their healthcare providers.5 Samantha credits peer mentoring as “especially effective in empowering a person to be a part of their care plan and if they have concerns, they are able to have a voice and feel listened to.”

Both Samantha and Dr Karris underscore how regular optimisation of HIV care benefits clinical practice and can improve a person’s adherence to treatment, health-related outcomes, and overall treatment satisfaction.8 This holistic approach to HIV treatment with open dialogue between healthcare professionals and patients has also been associated with improved self-reported health-related quality of life, beyond achieving viral suppression.5 Combining their patient, peer and provider perspectives, Samantha and Dr Karris call on healthcare professionals to:

  • Proactively empower people living with HIV to raise concerns such as loneliness, particularly during pandemic-related isolation.
  • Consider that isolation, reduced face-to-face contact and telemedicine may compound existing loneliness related to living with HIV.
  • Consider the long-term impact of HIV treatments and polypharmacy on people living with HIV.
  • Continue to have open and honest conversations with people living with HIV about taking HIV medication over a lifetime, and proactively raise the option of taking fewer medications, if appropriate.

Open conversations, compassion and community have the potential to change lives: “See the person, not the condition or conditions. They come second to who the person is and how you build a working relationship with them,” says Samantha.


*Polypharmacy: Taking multiple medications – defined in the Positive Perspectives study as taking five or more pills a day or taking medicines for five or more health conditions


[1] National Academies of Sciences, Engineering, and Medicine. 2020. Social Isolation and Loneliness in Older Adults: Opportunities for the Health Care System. Washington, DC: The National Academies Press.

[2] Marziali ME, Card KG, McLinden T, Wang L, Trigg J, Hogg RS. Physical Distancing in COVID-19 May Exacerbate Experiences of Social Isolation among People Living with HIV. AIDS Behav. 2020;24(8):2250-2252. doi:10.1007/s10461-020-02872-8

[3] Althoff KN, Smit M, Reiss P, Justice AC. HIV and ageing: improving quantity and quality of life. Curr Opin HIV AIDS. 2016;11(5):527-536. doi:10.1097/COH.0000000000000305

[4] Waterfield KC, Shah GH, Etheredge GD, Ikhile O. Consequences of COVID-19 crisis for persons with HIV: the impact of social determinants of health. BMC Public Health (2021) 21:299

[5] Okoli C, Brough G, Castellanos E et al. Shared Decision Making Between Patients and Healthcare Providers and its Association with Favourable Health Outcomes Among People living with HIV; AIDS and Behavior

[6] Mazonson P, Berko J, Loo T et al. Loneliness among older adults living with HIV: the “older old” may be less lonely than the “younger old”. AIDS Care 2020,33:3,365-82. DOI: 10.1080/09540121.2020.1722311

[7] Okoli C, et al. Relationship Between Polypharmacy and Quality of Life Among People in 24 Countries Living With HIV. Prev Chronic Dis 2020;17:190359. DOI:

[8] Chen W, et al. Engagement with Health Care Providers Affects Self- Efficacy, Self-Esteem, Medication Adherence and Quality of Life in People Living with HIV. Journal of AIDS & Clinical Research 2013, 04(11).

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