A range of tools to help improve online mental health forums has been developed by Lancaster University researchers after working with forum moderators and users.
The Improving Peer Online Forums (iPOF) project is a research project carried out by Lancaster University in collaboration with Berkshire Healthcare NHS Foundation Trust funded by the UK National Institute for Health and Care Research.
The Lancaster team was led by Professor Fiona Lobban, Professor Steve Jones, Professor Jo Rycroft-Malone, Professor Elena Semino, Professor Paul Rayson, Dr Tamara Rakic, Dr Heather Robinson, Chris Lodge, Zoe Glossop and Paul Marshall.
Lead researcher Professor Fiona Lobban said: "The use of online health forums is growing, yet evidence about their safety and effectiveness remains mixed, partly due to a lack of theory-informed design guidance. This study aimed to draw on the experiences of forum users and staff, alongside research on wellbeing-supportive design and self-determination theory, to develop evidence-based guidelines for creating safe and supportive forums."
Researchers analysed forum posts from seven peer online mental health forums in the UK and conduced a large online survey of around 800 users alongside approximately 50 in-depth interviews and 18 interviews with forum staff.
The findings show that forums that are easy to navigate, make users feel safe to post, and are supported by well-trained moderators offering timely and sensitive responses can help people find new ways to make sense of their mental health challenges, feel understood, and accepted in the forum. This can lead to feeling more empowered, a reduction in self-stigma, and increased mental well-being. Writing about experiences in a forum can itself be cathartic, but when posts have evidently been helpful to other members, posters also benefit from a sense of greater purpose and value. Negative impacts can occur if forums are difficult to navigate or if moderation is unresponsive, insensitive, or inadequate, as users can be left feeling unheard, misunderstood, or overly responsible for the welfare of others.
Professor Lobban said: "The interviews showed that people use forums because they are easy to access and help them get around barriers to face-to-face support, like having to talk in person. People used the forums for emotional support, advice, and to connect with others who have similar struggles. The word "scared" came up a lot in forum posts. It often appeared in phrases like "I'm scared because..." and "I'm scared of..." When looking at these posts, people often shared fears over identity, including questioning sexuality and gender identity, as well as fears of mental health symptoms."
More than half of the survey respondents said they felt safe to post because they could stay anonymous. However, almost a fifth said they had come across upsetting posts, and about a quarter worried that talking about mental health online could sometimes make them feel worse.
All data collection and analysis involved extensive input from the project's patient and public involvement group, including forum users, moderators, and senior forum staff which met monthly for 22 two-hour-long workshops throughout the study.
Working with this group, the researchers developed:-
· An animation for people with mental health difficulties, referrers, and commissioners to better understanding of the role of online mental health communities and how they work. Animation is accessed here.
· Guidance on how forums can best be designed
· An elearning curriculum to train and support forum moderators. This is freely available here.
Researchers also explored who uses forums and why including accessibility issues for ethnic minority groups as well as how forum users share lived experience. The importance of psychological safety emerged as a key issue.
