29 November 2023

Study explores unmet psychosocial needs of people living with long-term conditions.

Approximately 20% of people living with long-term conditions experience depressive symptoms that affect their lives but do not meet the diagnostic criteria for major depressive disorder. Although these people are at increased risk of developing major depressive disorder, there is currently no targeted psychological treatment available that intervenes early to support their mental health and help prevent the progression of depression symptoms. 

‘A qualitative exploration of the psychosocial needs of people living with long-term conditions and their perspectives on online peer support’ aimed to find out if online peer support could be used to address this problem. This work was funded by King’s Health Partners and Impact on Urban Health, through their Multiple Long-Term Conditions Challenge Fund.  

Hannah Jones, a research assistant overseeing the next stages of the research in creating a peer support platform, told us more about the study:

Why did you choose to study online peer support? 

Online peer support is an accessible, inexpensive, and scalable option that could help people with long-term conditions manage their mental health and overall wellbeing. Before we implement this type of support though, we need to understand the psychosocial needs of people living with long-term conditions and explore their perceptions of online peer support. We need to ask how or indeed if a peer support platform could support their needs.  

What did you set out to achieve? 

We asked people with long-term conditions to discuss the following key areas: 

  1. The interaction between their physical and mental health, and how their condition makes them feel. 
  2. Efforts they make to access support, such as where they might go to access information on living with a long-term condition. 
  3. What they might expect from a peer support platform and how it could best support them, alongside any concerns.   

As the study was conducted when the COVID-19 pandemic emerged, we also asked how recent events had influenced their life, and how it compared to their pre-pandemic life.     

What did you learn about the participants psychosocial needs?  

Participants felt there is generally a mind-body separation in the healthcare they received, with clinicians rarely discussing mental health in the context of their physical condition or asking: "How are you feeling?". Despite this, participants demonstrated an awareness of how their physical and mental health were impacting each other. The quote below demonstrates one participant experiences of the connection between their mental and physical health:  

(…) my mental condition is something aside, but I think at some point the two did collide.

(Focus Group 3, participant 1)  

Participants spoke about social support, and the tension between the desire to be independent and the discomfort in asking for help. Some were living ‘behind the mask’, attempting to hide that they were living with a long-term condition from those who might not understand.  

Our participants also shared their past experiences of peer support and perspectives on how future online peer support platforms may support their psychosocial needs.  

What were the perceived values and experiences of engaging in peer support?

  • Peer support was considered valuable for sharing health-related information. It offered a positive space for sharing personal experiences and hearing other people’s successes. 
  • People felt a sense of recognition through their interactions with people with similar experiences, re-affirming the belief that those with common lived experiences have better insight into each other’s lives and the difficulties they may face. 
  • People spoke about how it was important to not assume a particular approach to offering peer support would be appropriate for all wanting to engage with it, because ‘no size fits all’. What may work for some, may not work for others. There was also a recognition that an online peer support community may not be suitable for everyone at all points of their journey living with a long-term condition. 
  • However, not all discussions of peer support were positive, with some expressing the need for some degree of caution when using peer platforms. People felt that hearing about the negative experiences of others may result in negative reinforcement, and ultimately feeling worse afterwards.   

What did the participants say peer support platforms should be like?    

A secure and confidential space, dedicated to the needs of those living with long-term conditions - The importance of the space being technologically secure was emphasised so that users can feel their identity and content is protected.  

Accessible for all – There should be no barriers to engaging, particularly for those who wish to use the platform in private. One participant spoke of their specific needs for easy access:   

Within my culture, it's like a taboo … When it comes to mental health. So it's making … easy access to the sites where you don't need to go for a long process to kinda get to the stage.

(Focus group 3, participant 2) 

A safe space – The platform should protect privacy and a have a shared ‘code of conduct’ visibly published and followed on the platform.    

Authentic in purpose and motivation for creating it - Authentic in purpose and motivation for creating it - It must not be prescriptive or commercial. It should be co-produced with patients at the centre of platform development. Participants told us they were open to engaging with platforms that were ran by businesses.

What happens now?   

The findings of this study have informed the next stages of our work to co-produce an online peer support and psychoeducational platform for people with long-term conditions who are also experiencing depressive symptoms. The development of the platform has been driven by the importance people expressed of having support from others ‘like me’. Our findings gave clear guidance on how people with long-term conditions want online peer support to be delivered to support their mental and physical health needs.  

Our co-production team have named this platform “CommonGround”. Now we need to trial the platform among people with long-term conditions to capture their experiences of using the intervention.

For more insights on the development of our peer support platform, you can read our previous blogs hosted on the Qualitative Applied Health Research Centre website:  

To read the full paper we discussed in this blog, please visit: https://onlinelibrary.wiley.com/doi/10.1111/hex.13814. For further information about the project or about potential opportunities to get involved please contact Dr Grace Lavelle at commonground@kcl.ac.uk. 

Acknowledgements and further information.  

Thank you to all the participants who gave up their time to contribute to this work. Special thanks also to colleagues Aymie Backler and Gabriella Bergin‐Cartwright for supporting the facilitation of the focus groups.   

KHP Mind & Body programme is committed to joining up mental and physical healthcare, training, and research to improve health outcomes for our patients and service users. Find out more about this important work.