Specific clinical pathways to pain management and implicit bias training for healthcare providers are needed to ensure people with HIV receive appropriate care for chronic pain, argue Venetia Baker of King’s College London and colleagues in AIDS Care. Findings showed that Black people, especially women, were less likely to be referred for specialist pain management than their White male counterparts. Moreover, participants feared stigma if they shared their HIV status with non-HIV specialists.
Pain is very common among people living with HIV, especially older people, resulting in a major impact on quality of life and use of healthcare resources. There are several psychological and social implications of having HIV and chronic pain. It is linked to poorer mental health, including more severe depression, psychological distress, post-traumatic stress and disturbed sleep.
This can also impact a person’s adherence and ability to remain undetectable, as well as limit their social life and daily activities.
The study involved six focus groups, including specific groups for men who have sex with men, BAME (Black, Asian and Minority Ethnic) people and women. Participants chose which focus group to join.
In total, 39 adults living with HIV and chronic pain participated in the study. Of them, 62% were female, 72% were Black African, 8% were Black Caribbean and 21% were White. Of the 39, 80% were heterosexual, 15% were gay or bisexual, and two people (5%) preferred not to share their sexuality. The majority were aged 45 to 56 years old (77%).
On average, participants had been living with HIV for 18 years and 84% of participants were taking HIV treatment. Almost two-thirds (62%) said they found it difficult or very difficult to live on their current income.
Fear of HIV stigma impacting access to treatment
Many participants linked their chronic pain to their HIV status, believing that HIV (or HIV treatment) had caused or exacerbated it. Therefore they believed they would need to share their HIV status with their GP in order to receive the right support, but feared discrimination if they did.
“If you say, I have pain, you are most likely going to be asked the question “why?” Are you really going to tell me that you would be straight faced and say it’s HIV related?” - Black heterosexual man
“There is still a lack of understanding in regard to the HIV status so that stigma is still there... If the person you are talking to learns about this [HIV], that opens up a free space for you to speak about your pain.” - Black heterosexual man
“When you tell the nurse or whatever that you are have HIV, they give you a dirty look. I am honest with you. Sorry but this is the truth.” - Black heterosexual man
“These [pain] services are already there, but people living with HIV don’t use them. It’s not that we don’t have this pain or whatever. We don’t go there because of stigma and discrimination” - Black heterosexual woman
Fractured care pathways
Participants described poor relationships with their general practitioners (GPs) in primary care services. Some felt they did not understand enough about HIV. As a result, some GPs assumed that their pain was HIV related. On the other hand, some participants shared that their HIV clinics encouraged them to discuss their pain with their GPs because it was not HIV related.
“Every time we go to see the professionals, the doctors, my HIV status overshadows all my sufferings. As soon as they have seen you are HIV they are no longer concentrating on what I want to say to them. They are now talking about my HIV. I am not here for HIV; I am here for my pain.” - Black heterosexual woman
“Not everyone who lives with HIV has disclosed their status to the GP so there is that trust. Everyone wants a GP who understands. When you go there to talk about the pain you want a person who understands. The next time you don’t see the GP that you have started to explain to, you see another person.” - Black heterosexual woman
“The HIV consultant are pressured into just doing HIV these days. He says, look I can’t do this for you, you have to talk to the pain clinic, or your GP. So it’s a limited discussion with the HIV consultant.” - White man who has sex with men
Participants questioned the benefits of living longer if they were not living well. In some cases, their unaddressed pain had led to suicidal thoughts.
“There are times where I just cry because I just didn’t know any further. I didn’t know past the pain, pass the tablets because pain stopped me doing my hobbies. So I just sit and cry because I didn’t know.” - Black heterosexual woman
“I suppose I have had suicidal thoughts as result of it because it just, I cannot take anymore. It’s very difficult to project on a future given that my experience now for 12–14 years plus is that this pain isn’t necessarily going to get better.” - White man who has sex with men
Importance of HIV-centred pain management
Many participants shared how HIV self-management courses helped them.
“I did self-management and honestly it helped me talk and explain to the doctors, not to be shy. Doctors sometimes can be intimidating but the self-management course taught me, it’s your disease, you should go talk and tell [your doctor] about the pain.” - Black heterosexual woman
Barriers for women and Black people
Several studies have shown that when women and Black people tell healthcare professionals about their pain, their concerns are more likely to be dismissed than their White male counterparts. In this study, authors note that all of the White participants had been referred to additional pain services through their GPs, but this was not the case for the Black participants. In the women’s focus group all 13 women were Black and only one had been referred to additional pain management services.
Many Black participants also identified cost as a reason for not being able to access private services.
“I’ve tried chiropractors in the past which helped out with the acute pain. So, physical intervention has helped a lot. I should say, I’ve had to pay for myself.” - White man who has sex with men
“I have seen in so many hospitals that they have a pain management session, but I don’t know if anybody has been referred to that. [One woman raises her hand]. Only one person. Most of us, we have never been there, and we don’t even know how it looks like and what they do there. So opportunities should be given to most of the people, and people living with HIV, because we have a lot of pain within us. But we are not given that opportunity to go into those areas and see what they provide.” - Black heterosexual woman
The authors say the ‘Fear Avoidance Model’ shows how individuals’ experience of pain may lead to them avoiding activities. It highlights how pain can cause someone to be trapped in a cycle of negative beliefs about their pain. This may cause a fear of the pain and result in avoiding activities. However, fear and avoidance can further cause disability and depression and may lead to some not seeking help. The model suggests that reducing fear and confronting the pain will reduce the pain.
The authors make several recommendations. Holistic, person-centred clinical pathways are needed to increase the likelihood of people with HIV being successfully assessed and supported to manage chronic pain. Clearer pain management pathways must be established between primary care (GPs) and specialist care (HIV services and pain services). GPs may also need additional resources on ways to manage non-HIV related conditions. Moreover, care must consider other factors that affect pain, particularly mental health.
GPs should undertake implicit bias training, and pain management resources should be offered through trusted BAME HIV community networks. This will increase the likelihood of Black people and other racialised communities accessing the appropriate support.
They also recommend that pain management interventions should incorporate an opportunity to connect with others living with HIV and support self-management.
Baker V et al. “I have failed to separate my HIV from this pain”: the challenge of managing chronic pain among people with HIV. AIDS Care, online ahead of print, January 2021.