Globally, a high proportion of people experience mental health and psychological wellbeing problems, which is a serious public health concern (Mark, 2024). The Positive Voices Survey in 2022 highlighted that more than 50% of people living with HIV reported experiencing anxiety and depression (UK Health Security Agency, 2024). The survey goes on to highlight that a significant proportion (24%) of people living with HIV have been unable to access support to help manage their emotional and psychological wellbeing.
Since the start of the HIV pandemic, mental health and HIV have always been linked for a number of intersecting reasons. People with HIV are more likely to have mental health problems and people with mental health issues are more likely to acquire HIV (Lang et al, 2023).
Mental health difficulties and HIV both disproportionately affect groups of people who are marginalised and experience socioeconomic deprivation such as the lesbian, gay, bisexual, transgender and Black, Asian and minority ethnic communities. Chemsex, HIV and mental health are also closely associated with mental health difficulties such as depression, anxiety and psychosis, as are the daily challenges of living with traumatic experiences (All-Party Parliamentary Group on HIV and AIDS (APPG), 2020).
The APPG (2020) report on HIV and mental health highlights that access to psychological support is often fragmented, with varying thresholds for practitioners accepting referrals, compounded by potentially long waiting lists. Moreover, if services are not HIV specialist services, they can pose a barrier for some people living with HIV against receiving the support they need. It was also highlighted within the report that people living with HIV often feel reluctant to engage in psychological support to avoid the perceived double stigma of living with HIV and having a diagnosis of a mental health condition.
Although not everyone living with HIV will experience mental health issues within their lifetime, there is clear evidence to show that mental health and HIV are closely linked and that, to treat HIV effectively, you cannot ignore a person's mental health (Croston and Rutter, 2020). There is a growing need to develop resources that will help promote psychological wellbeing.
Therapeutic approaches to supporting people living with HIV
Within clinical practice, a number of approaches can support people living HIV with regards to their mental health and psychological wellbeing. These include cognitive behavioural therapy (CBT), acceptance commitment therapy and mindfulness-based therapies (Croston and Rutter, 2020). There is a growing body of research that supports the use of compassion-focused therapy (CFT) to manage complex issues, such as shame, loneliness, stigma and disease adjustment (making sense of this diagnosis and the impact it has on their health) (Gilbert, 2019). It has been well documented within the literature that compassionate mind training (CMT), which comprises a series of mind and body sessions, contributes to changes in the functioning of the autonomic nervous system, particularly the vagus nerve and alterations to neurophysiological responses in the brain, as well as differences in self-reported psychological measures, such as shame and self-criticism (Kirby et al, 2017; Gilbert, 2017; 2019; Best et al, 2021; Northover, 2021).
Within HIV care, a growing body of research has highlighted the effectiveness of using CFT and CMT to help increase psychological flexibility, increase feelings of wellbeing and reduce suicide ideation (Petrocchi et al, 2024). Emerging evidence suggests that CMT may be helpful when exploring high levels of shame, self-criticism and self-blame, which are known to be greater in people living with HIV (Matos and Steindl, 2020).
However, as far as the authors are aware, using wellbeing sessions and an app guided by CFT/CMT has not been researched to explore their acceptability and benefit for people living with HIV.
Research aims
This study had three aims:
Method
The wellbeing sessions were co-created with people living with HIV who were employed as peer navigators by the charities Positive East and the George House Trust, which work with people with HIV. They consisted of psychoeducation around CFT and CMT and included interactive sessions as well as discussion around key CFT concepts such as what compassion and self-compassion mean.
Participants were invited to the wellbeing days by the peer navigators, advertisements within the charities’ buildings and via the charities’ websites.
The four wellbeing days (two mixed, one female only and one male only) were co-delivered by a clinical psychologist (CI) and a specialist nurse trained in CFT (MC) and peer mentors. The wellbeing days explored the principles of CFT and learning how to practise CMT skills.
Following the wellbeing events, participants were invited to use an CMT-inspired app (The Self-Compassion App; Box 1) to establish if this approach improved psychological outcomes for people living with HIV.
The Self-Compassion App
A difficulty in compassion training is providing the ideas, skills and practices it involves to people who may not have access to therapy. In part to address these concerns, Chris Irons and Elaine Beaumont developed the Self-Compassion App, based on The Compassionate Mind Workbook (Irons and Beaumont, 2017)
This app has 28 sessions. It introduces people to the compassion-focused therapy model, outlines key ideas of psychoeducation and compassion skills practices
Using the app has been found to lead to significant increases in self-compassion, selfreassurance and wellbeing, along with significant reductions in the fear of experiencing and expressing emotions, self-criticism, anxiety and stress (Halamová et al, 2022)
Participants who attended the four wellbeing events were asked to complete an evaluation of their content when they had ended. As a result of the themes that emerged from the evaluation, participants were invited to take part in an online interview to share their experiences of engaging with the wellbeing days and The Self Compassion App.
To ensure that the data collected were of a rich quality, the researchers needed to find a way to enable the participants to consider and reflect on their experiences; therefore, it was important to create questioning that enabled the participants to ‘dwell’ – in and on – the experiences being enquired about (Eatough and Smith, 2006). The research team developed a partially structured interview schedule that, while helping to structure the interviews to some extent, also facilitated such dwelling. It was hoped that creating the schedule and asking questions such as ‘Tell me about your experience of using The Self-Compassion App’ and ‘Can you share with me what you found helpful when using the app?’ would help reveal the role the app played in developing self-compassion.
Participants were made aware that the interview would remain confidential unless they disclosed anything of risk to themselves or others. Pseudonyms were used after data collection and before analysis. Data collection took place online; each interview lasted between 30 and 40 minutes, and they were recorded and transcribed.
Data analysis
The wellbeing days were evaluated using Kirkpatrick and Kirkpatrick's (2016; 2018) four levels of training evaluation; and the technology acceptance model (Davis, 1989), which explores knowledge attained, current relevance, ease of understanding and barriers to use.
Ethical considerations
Participants were given an information sheet that detailed the nature of the study and the reasons why it was being carried out, 2 weeks before their interview took place. They gave written consent to take part. While consent was being taken, they were provided with an opportunity to ask questions and informed that they could drop out of the study if they wanted.
Ethical approval for the study was given by the University of Nottingham's ethics committee.
Results
Phase 1. Evaluation of wellbeing events
In total, 35 participants attended the wellbeing events: 21 said they were male and 14 they were female. Overall, 97% (n=34) found taking part helpful and that the sessions were engaging. The majority of participants (n=34) felt that the wellbeing event increased their knowledge around compassion and the benefits of CMT.
As a result of engaging in the wellbeing event, the following were identified as being important learning points by the participants:
As a result of attending the wellbeing sessions, participants reported an increased awareness of the importance of emotional regulation and how using the CFT theories had made them aware that different systems drive emotional responses. Five participants stated that they understood the importance of developing a positive relationship with themselves as a way to build self-compassion.
When asked to consider what they had learnt as a result of taking part in the wellbeing day, participants highlighted the need to engage in more self-care activities and becoming more aware of how they respond to other people depending on their own emotional state. A key revelation that was explored within the evaluation was that different people viewed compassion and self-compassion in a great variety of ways; it also was noted that people may not be able to receive compassion in the way that it was being given or be unsure of how to accept acts of kindness because of their previous experiences.
One participant struggled with the session content as he felt he could not relate to it. This made him question his ability to be compassionate and, in turn, receive compassion.
Phase 2. Semistructured interviews
The questions for the qualitative interviews were developed using the technology acceptance model (Davis, 1989). This helps researchers to understand factors that influence individuals’ intentions to use new technology, and its perceived ease of use and perceived usefulness.
After attending the wellbeing day and using the app, all 35 delegates were invited to take part in the semistructured interviews. Out of the 35, six responded to the invitation; three said they were male and three female. The researcher interviewed everybody who responded to the invitation to take part in the semistructured interviews to enable them to share their experience of using the self-compassion app.
The interviews were transcribed then analysed using thematic analysis (Clarke and Braun, 2017). This analysis revealed the following themes:
Engaging with The Self-Compassion App
When asked to consider what features were helpful within The Self-Compassion App, the following functions were identified by the participants as being helpful.
One participant recalled the following when exploring the app's functions:
‘The app has been useful when I have been listening to the content; however, my brain goes off to make sense of what I am hearing. When the app suggests focusing on your pulse in the heart rate feature, I wonder if it knows that I have had five heart attacks, or will it be able to recognise that I have high blood pressure?’
A key feature within the app is the choice around length of session and the type of voice that users want to listen to. The benefits of this option were highlighted:
‘I liked having the option of either a female or male voice. I also liked that I had choice about the length of the sessions. If I had more time, I often listened to both.’
‘I enjoyed the options for the different lengths of the session, different type of meditations and being able to choose the voice of the person who is guiding you for the meditation, which can depend on the dates, sort of time of the day and the mood you're in.’
This interviewee went on to discuss how having this choice has helped with issues they were experiencing:
‘I think the course itself is helpful and I have used some meditation options, especially in the evenings. I've been having some trouble with sleeping, so the guided meditation always helps.’
The flexibility of the app was also a positive:
‘I did like the check-ins as well and the option of actually writing up under the prompts, which is helpful. The journal is also a good thing to do.’
One interviewee felt it was inclusive of his learning style:
‘I'm dyslexic, so I don't like reading. So, it was good being able to listen to the lessons otherwise I would not have engaged in the app. If it wasn't for me being able to listen, I wouldn't have engaged.’
Knowledge gained
When asked to identify what knowledge they had gained as a result of engaging in the app, one participant said:
‘I've had short-term counselling so, in my head, pun intended, it's 6 weeks. Is this enough to sort my life out? It feels like here's the can of worms, let's shake it up and then open it and then you're done in one session and then you put the worms back in the can and then they are out of sight and out of mind. The app feels more of a longer-term way of dealing with the worms.’
‘They then went on to state when it asks you what is self-compassion? I thought it was a tricky one and felt it was wishy-washy initially. I'm not saying all of it is wishy-washy, but there are some parts of self where it can be so ambiguous. The app has helped me to work through this. Self-compassion can sound abstract: what are you actually talking about here? The app helped me to think about what it was.’
When exploring how she felt her self-compassion had developed as a result of engaging in the app, one participant recalled:
‘I think sometimes, you know, we have tools – I think the app has given me back the motivation to use them. I do use them in a crisis, I just need to learn to use them all the time. I liked how the prompts and exercises helped remind me of this.’
This was also reflected with regards to knowledge gained:
‘It is something that we all think that we know what it is – self-compassion/compassion – but we all experience it and give it in different ways. You know, like the old romance novels, you read them and think that is not love, whereas some people think that's love. I think compassion is like that. There's not a one set definition. It probably means different things to different people.’
When considering what is meant by compassion, one interviewee felt using the app had helped her to understand the concept:
‘The concept of compassion sounds straightforward but it actually isn't, and I think the fact it's explained in such a way within the app that it is a quite easy to digest is really helpful.’
This interviewee then stated that this has helped her to engage with the learning content and material within the app.
Developing self-compassion
This theme relates to how participants developed self-compassion as a result of engaging with the content of the app.
Before engaging in The Self-Compassion App, one participant had many concerns and was unsure how she would manage these anxieties:
‘My worries give me sleepless nights most days and I am already panicking for something that will happen next year. I don't even know if I will be here next year.’
Since engaging in the app, this interviewee reported:
‘I try to just stay here, come back like be here, be present when people are talking to me. I try to pay more attention. I know when and where my mind is going off and I know when to call it back and I know when to say, “OK, I can't deal with this now. I'll deal with you later and I'm living in the moment.” The tools I have learnt really help you anchor your thoughts around self-compassion. They really make you feel relaxed. I think using those breath techniques have been really good for me.’
Another described how he believed he had started to develop self-compassion in the form of awareness:
‘When people are going through challenges, I think what you need is a mental hug. Whereas, if you, if you're not very compassionate minded, you don't want that hug. Just being aware that people are not OK is sometimes enough.’
When asked to consider ways he thought would help him to develop his self-compassion, this interviewee went on to state:
‘I think for me it would be good to be in a group. I don't know if you know [whether we] could do a Zoom … things like this doesn't necessarily have to be a physical group, but if it was with other people, that would be really helpful for me.’
Challenges with developing self-compassion.
Two participants raised some concerns about developing self-compassion using the app:
‘So the bit in the app where you're asked to think of examples where what form to fill in, what you've learned, that is that is too much CBT for me. I hate the thing of having to write down what I've experienced or, in this case, type it into the app, so I didn't do any of that and I don't know why I can't do it. It doesn't feel useful to me to do it. It just feels this field just feels really unusual and I don't wanna engage with doing it. I don't know whether [it's a] hangover from … school and feeling like it's homework.’
Another articulated the following when exploring the concept of self-compassion:
‘It's a tricky one for me because it's sort of like, a coffee drinker trying to drink tea – it didn't feel right. It won't physically hurt them, but it's just not something that they think about or do. It just didn't land with me.’
Implications for clinical practice
As HIV care moves towards being a long-term, manageable condition, service delivery is changing, with patients accessing services delivered by different providers to meet their healthcare needs. New ways of working need to be explored to ensure the evolving needs of people living with HIV are being met. The present study has identified that CMT is an acceptable way to provide psychological support for people living with HIV.
However, what has been highlighted as a result of undertaking the research and engagement in the wellbeing session is that who is offered the app and what support they may require must be considered. The way in which CMT is delivered within each setting will also need to be thought about. Moving forward, a more hybrid way of offering support to people living with HIV while they are using the app may help to maximise its impact. This approach may further help to embed the concepts, increase engagement and offer practical support, while providing a safe space to ask questions. Moving forward, co-creation and co-delivery are key to designing strategies to improve psychological wellbeing.
The results of this study provide some interesting findings about how its participants view compassion and how it is developed. It is worth noting that what people consider is compassion may vary so it is important to ensure they spend time figuring out what it means to them.
The implications of this project are that CMT may be an acceptable way to provide psychological support for people living with HIV.
The next step is to secure funding to consider the use of a hybrid approach for people using the app by offering online group and one-to-one sessions to explore the content and share learning.
Conclusion
The wellbeing day and the The Self-Compassion App were well received by people living with HIV.
This article has explored, illuminated and collated key features that are important when considering how the development of self-compassion among people living with HIV can be supported.
This project evaluation established that the wellbeing events and The Self Compassion App are an effective approach to supporting people living with HIV when dealing with difficult emotions. This evaluation will be used to support the development of future wellbeing events.