Acceptability of psychologically-based pain management and online delivery for people living with HIV and chronic neuropathic pain: a qualitative study

Not wanting to take more pills

Participants felt that there is not enough support to help them manage pain. Many expressed a wish not to take more analgesic medications. This was important in the context of taking daily ART. Many had tried numerous analgesic medications and experienced limited benefit or problematic side effects.

“…you know so many pills in my life which I really don’t want any more, less is possible, I always tell doctor [name] please no more pills, no more pills.” (P12)

The cost of over-the-counter analgesics was also a barrier for some.

“…I have to buy it [ibuprofen]…at times I don’t have money” (P18).

Understanding of the mind-body connection

Participants provided many examples to illustrate their understanding of the mind-body connection. In addition to articulating links between pain, low mood and anxiety (detailed in [32]), many described the attention-grabbing nature of pain.

“Because you are unable to, you know, stop thinking about the pain that you have.” (P3)

At the same time, participants provided examples of how pain was less intense or overwhelming when they were focused on certain activities. The role of psychotherapy for pain management made sense to participants in the context of this understanding of the mind-body link in pain.

“Certainly with my feet you know, sometimes if I’m really busy at work, or I’m, or I’m doing something that keeps me occupied then I don’t think about it [the pain] but it’s then when you know when I’m just sitting or whatever that or, obviously when I’m walking it’s, I’m more conscious of it.” (P17)

Previous experiences of psychotherapy

Many participants disclosed that they had previously received psychotherapy or counselling. This was primarily in the context of adjusting to life with HIV or to manage a range of mental health difficulties. Participants reported previous exposure to aspects of cognitive-behavioural therapy, mindfulness, psychodynamic therapy, and hypnotherapy. The format of past treatments ranged from self-directed learning to individual, group, and online therapy. Participants saw how strategies learnt from past psychotherapy could be adapted to help manage pain, although pain management had not been a focus of past psychotherapy for most.

“…I know with my psychologist because I suffer from anxiety, that when I…occupy myself in a specific direction of doing something productive*, the anxiety falls away and then it’s a similar process I suppose with the pain.” (P14)

In contrast, however, some participants did not see the potential role of psychotherapy in pain management, specifically for reducing the pain. A few expressed negative experiences during past engagement with psychological/psychiatric services.

“I don’t know, I don’t know, for pain? I don’t know, I mean, I suppose I’d give it a go, but it’s like…trying to teach an old dog new tricks, you know what I mean? I have certain strategies and I…uhm…and it’s like mindfulness, like I said, there was some things [in the mindfulness course] that I found…uhm…I had already been doing but there were somethings I just didn’t get.” (P26)

*Words in bold and italics demonstrate emphasis by participant when speaking.

Multidimensional goals

While some participants hoped for pain relief, they also identified a broad range of goals that they might wish to pursue if they engaged in a psychologically-based pain management treatment. Goals included learning new skills, leaving the house more, having a healthier lifestyle, strengthening relationships, improving mood and confidence, contributing to the community, hobbies, and having more control over their life. At the same time, some participants appeared focused on obtaining pain relief, while others hoped to control the impact of a broad range of physical symptoms on their lives. Many participants connected with an approach that focused on taking small steps to achieve their goals and building up progress over time; some had already been successful doing this in the past.

“I realised I have to start doing something, you know, and I picked up my sewing again. So I started to do stuff at home myself, maybe just flick through my sewing. I collect, I’m a collector, so…I look through my collection of quilts or something umm and then sort of maybe design, so I say okay, today I’m going to think up a quilt, what, you know, the pattern, do that on a day…” (P26)

Goal setting brought up difficult thoughts and feelings for one participant in particular; this person identified that treatment materials should communicate that participants are free to choose to set manageable goals if and when they are ready. For some, focussing on goals was difficult in the presence of other HIV-related challenges.

“At the very…very baseline level that it is okay…just to be. What we are giving you is a space to be and to breathe with all that pain and all that sh*t and all the rest of it that you have to deal with that there is this that we can move on when you are ready if you want to, if not stay there for a bit…and then…you know what I mean?” (P6)

One participant identified the need for cultural sensitivity when discussing values-based goals:

“I noticed when the gentleman [in the video] uses the word values…culturally there can be misinterpretation. It is wide, values, or African values or they can be different.” (P21)

Lack of Internet access, literacy, or comfort

Many participants had Internet access and said they would be willing and able to use a treatment website. However, some did not have reliable Internet access or worried about their ability to navigate a treatment website. Notably, some had been making efforts to use community resources to enhance their computer literacy. Some said they would be willing to use an online treatment if shown how to use the website or if they were provided with a device with Internet access. Participants generally agreed that a simple website with few external links that did not have multiple layers of pages would be most helpful.

“That [being given access to a device with Internet] would be helpful because I must tell you there are a lot of people out there who have interest in doing things but because, especially the Internet, you will tell them, give them advice you know if you go online, you can check this and that and they would say but I don’t have a smartphone.” (P25)

A few participants explained that they did not feel the Internet was an appropriate means to deliver a psychological treatment for pain as it is too impersonal, and preferred face-to-face therapy.

“…everything’s online and distant from you as a person and I think that has become a frustration, that when you just, I mean the thing is now you are just one in millions […] yeah it’s very impersonal services and everything done automated and so there is a slight [hesitates] frustration but [sighs], you know, we live in a modern world with technology, I use technology. I’m not against technology at all but the thing, it…[hesitates] personal contact and caring…uh…does help a lot more than an app does.” (P4)

Concerns about confidentiality and trust

Data security and confidentiality were very important to participants, particularly due to HIV stigma.

“Well data, I don’t care what anyone says. Putting all that stuff on the phone I would not do. Specially [sic] with what’s just happened with…you know… [recent high profile data breach] nothing is secure anymore, you have to sort of start with the premise that everyone’s going to eventually have everything.” (P6)

It was important for participants to know who had access to their data and to choose how much data they provided online. Participants also wanted to know that online health information came from a reputable, trustworthy source.

“Uhhh email for me is fine [hesitates] but it it I-I-I’d be reluctant I think about…the amount of information or if if I believe for me is confidential then I might be cautiously putting it in an email.” (P2)

In contrast, one participant felt that completing an online programme would enhance privacy over a face-to-face pain management group, where HIV status might be disclosed.

“That [online treatment] for me, for me personally, sounds better because I, because of, there’s so much around my HIV etcetera, I wouldn’t probably want to do a group. Whereas that [online treatment] I could do at home, privately, and it’s more like one to one…I’m better with one to one.” (P24)

Engaging in online psychotherapy alongside challenging symptoms and emotions

Several participants worried that they would struggle to complete an online psychological treatment when pain, other HIV-related symptoms, or mental health problems worsen, as these symptoms affect their concentration and motivation. They felt that they would be more motivated to engage in face-to-face psychotherapy when they experienced an exacerbation of these problems. Other participants felt they would be willing to do the online treatment even when pain was worse, especially as they felt that was the time treatment would be more helpful.

A few participants initially described how experiencing strong emotions like sadness, fear, or frustration would limit their willingness to complete a psychological treatment online. However, after watching the exemplar online ACT videos, their reactions shifted and they subsequently indicated more willingness than they initially thought to do the treatment with these challenges.

“Sorry…but being at home over the Internet I don’t think it will help because think about you wake up in the morning with the pain and your mood will be low and you don’t want to do anything to go to the Internet, it’s, I don’t know if it will work. Especially for people that live with depression like me, you know.” (P13 before watching videos)

“…the video said you must make a decision why something you have to do today is like, for me it’s like wow…the message is really really powerful, and that, especially for me when I get depression, the pain makes my mood very low and I don’t want to do nothing, so when they say make a decision is a little step…small step to do today. And my mind said, okay, this is big encouragement…it just said small steps, no big, small…it could be stand up and walk, could be…I don’t know…this could be dress yourself go out.” (P13 after watching “Small Steps” video)

Treatment accessibility

Many participants identified that the potential flexibility of online treatment delivery was advantageous, especially if it could be accessed on a range of devices (e.g. smartphone, tablet and/or computer). Some felt burdened by having to attend many medical appointments already for HIV and other health problems.

“That sounds quite promising because often it is difficult to get to appointments, and when you have to go to an appointment again it can create an even bigger umm bigger scenario with a problem in your head, because again you are going to another appointment…uh…so I think that that could take a lot of that stress.” (P15)

Additionally, some felt remote delivery could increase continuity in care, especially as it could be used ‘on demand’ in times of need.

“Yes, the continuity, the continued support and you are able to access it at regular times, at any time, that is important in managing.” (P16)

Preferences for presentation of online content

Many participants expressed that they connected with the information and psychological exercises presented in the videos. However, participants varied in their preferences for the style of videos; namely, whether they should be presented by human actors (as in the first two) or by graphic illustrations (like the BeYou+ video). Some felt cartoon graphics minimised the gravity of their experience of life with HIV and that human actors provided the human connection needed in a technology-driven programme.

“and I thought the ummm…the HIV one [BeYou+ video], the ugh, the animation…ummm…that that that was okay [hesitates]…a little frivolous I thought. Ya know, because ugh…I think it’s a little more serious than what I felt was coming out [of the video]. (P14)

In contrast, others preferred the graphics in the BeYou+ video, which they experienced as more engaging and optimistic. Most preferred a mixture of presentation styles. Participants appreciated that their peers had varying levels of English proficiency and there was consensus that language needed to be simple, direct, and free from jargon. Participants generally did not want to read lots of text. However, some indicated that a hard copy book would help them to follow the online materials more effectively, or could be used to provide more in-depth explanations of material on the website for people who wanted this.

“I think I am one of those people that like a mix of everything, umm, and not drawn specifically to, drastically to one area, uhm I like the visuals, the colour, very visual [referring to BeYou+ video]. Umm, but also…the thing with apps I miss the kind of human interaction, like the first [videos] you showed me with the real person talking and you could see them, which uhm, yeah I miss, so I quite like that as well.” (P5)

Experiencing success and reinforcing persistence

Participants indicated they would be willing to stick with an online pain management programme if they experienced early benefits. They identified that frequently repeating key messages, tracking progress, prompts, and built-in rewards could help them to stick with the treatment and their goals. Setting realistic expectations for treatment outcomes and emphasising the need to actively practise new strategies were identified as ways to keep people motivated. This was demonstrated by one participant in particular who had previously completed courses of online CBT and mindfulness:

“And it it’s so important to allow people to understand it will work, but you have to repeat, and repeat, and repeat information to go, for people to take it in. And the big repeat is, you’ve got to do it…It’s not like swallow this tablet and your pain goes. This is keep doing it. It will take, you know…Very explicit to say umm you will probably find some benefit immediately, but it will only really kick in in like two, three weeks or four weeks. And the longer you do it the better it will be. (P3)

Usefulness of therapist support

Most participants felt having some form of therapist support would help them benefit from an online psychological treatment. They felt that having a therapist would hold them accountable for completing treatment, help to manage challenging experiences if they arose, and help them progress.

“They can help you actually ugh stick with the programme because one of the relations is…there is a positive and a negative. The positive is gives encouragement…contrary to that also is might be sort of like some people will say ‘oh okay, well I’m going to get a phone call anyway so I better watch it.” (P21)

There was also a feeling that therapist support would enhance the ‘human element’ of an online treatment.

“And you know that you’re not just sat there clicking boxes and not knowing if anybody is going to read it.” (P23)

Participants varied in their preferences for therapist support to be delivered by telephone, face-to-face, or online messaging. Only a few felt that they would not need therapist support to complete an online programme. One participant worried that therapist support might open “Pandora’s box” of other problems that could be difficult to manage, especially if a person was not receiving more intensive psychological support elsewhere.

“I am not so sure if you have someone to check into, I think that is something quite…that is opening up…uh…could be opening up Pandora’s box there […] unless they, they really are going to be there, I am without support and if the door opens […] I am going to jump on it.” (P6)

Desire for social connection

There was a strong desire to connect with other PLWH and pain. This was particularly important as many felt they did not have adequate social support in their lives. A key perceived benefit of this was a sense of shared understanding and learning successful pain management strategies from others. Knowing that a trusted peer with similar problems completed a similar online programme would motivate one to do so. Many felt that a support or chat group alongside the online treatment could be beneficial. Several participants hoped to learn new pain management skills so that they could share these with others in their community.

“The improvement that I hope to see is just uh…like I mentioned it’s not for myself, I would really like to be like an ambassador to most of those who have pains and the, umm, I would really like to work with them, you know.” (P25)

However, a few expressed a strong wish to not attend another “sick group”.

“I am just quite, I am quite desperate to…not be ill and not belong to another sick group.” (P15)