Impact in Qualitative Research: Grace Lavelle and Hannah Jones on exploring the psychosocial needs of people living with long-term conditions

Abstract cartoon characters with a speech bubble and a computer screen reading "Exploring the psychosocial needs of people living with long-term conditions and their perspectives on online peer support"

Dr Grace Lavelle and Hannah Grace Jones work on a QUAHRC-supported research project “CommonGround”, co-creating and evaluating an online peer support platform for people living with long-term physical health conditions. In this blog ,  they reflect on the qualitative research that laid the foundations of the overall project.

Approximately 20% of people living with long-term conditions experience some 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. We wanted to try and solve this problem by understanding what people with long-term conditions need, and whether they think online peer support could help them manage their mental wellbeing.  

To begin our project, we ran a study to explore the psychosocial needs of people with long-term conditions and their perspectives on online peer support to inform the future design of our new platform, CommonGround.  

Why did we 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 implementing this type of support, we needed to understand the psychosocial needs of people living with long-term conditions and their perceptions of online peer support.  We also needed to ask how or if a peer support platform could support their needs.   

What did we set out to achieve?  

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

  • The interaction between their physical and mental health, and how their condition makes them feel.  
  • Efforts they make to access support, such as where they might go for information on living with a long-term condition.  
  • 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 we learn about 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. However, participants demonstrated an awareness of how their physical and mental health were impacting each other: 

“(…) 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.  

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 ‘like me’ 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 said it was important not to assume one approach to peer support would be appropriate for all wanting to engage with it. 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.  
  • However, not all discussions of peer support were positive, with some expressing the need for 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 participants say peer support platforms should be like?   

1) 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.  

2) 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:  

 

“Um, 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)  

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

4) 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 run by businesses.  

What happens now?   

Our findings have informed the next stages of co-producing an online peer support and psychoeducational platform for people with long-term conditions who are also experiencing depressive symptoms, called “CommonGround”. 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.   

Now we need to trial the platform . to find out what people think of it.  You can read more about this research here. If you are living with a long-term condition and interested in getting involved in our research trial, click here: https://bit.ly/commongroundresearch. 

To read the full paper we discussed in this blog, visit the online publication: A qualitative exploration of the psychosocial needs of people living with long-term conditions and their perspectives on online peer support.  For further information about the project or about potential opportunities to get involved, please contact Dr Grace Lavelle at commonground [at] kcl [dot] ac [dot] 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.   

Funding 

This project is being funded by King’s Health Partners and Guy’s and St Thomas Charity from the Multiple Long Term Conditions Challenge Fund and the National Institute of Health Research Biomedical Research Centre at the Maudsley. This project is sponsored and organised by King’s College London.