This is another post in our series Reflections Careum Congress 2014. Here guest author Neil Coulson on the importance and challenges of online support by “experts by experience” or in other words: “peers”.
- Patients are living in the digital era and now have more opportunity to peer support
- There is a growing evidence base as to the benefit to patients
- There are some potential disadvantages to self-help and peer support online
Peer support – its benefits
People often find it helpful to talk to others who are facing similar problems or share the same experiences they do. Whether that’s dealing with a long term medical condition, disability or a life changing experience, peer support is when people who come together to offer and provide much needed emotional support, advice or reassurance.
In recent years there has been a huge rise in the number of self-help and peer support groups that draw people together who are dealing with a wide range of health-related problems. Research has shown that health-related peer support and self-help groups can help reduce a sense of isolation as well as improve mood and general sense of well-being. They can also help people access relevant information and advice as well as explore new ideas and ways to cope. People who attend such groups often feel empowered as a result of their shared experience of mutual support and self-help.
The changing nature of self-help and peer support in the digital era
Since the development of the Internet, new opportunities to seek or provide support and self-help online have appeared and in the past 10 years there has been a huge increase in the number and type of groups that are available (e.g. Facebook groups, discussion forums, chat rooms etc). Online self-help and peer support groups have become very popular for many people and for a range of reasons. For example, there are those who may have limited access to face-to-face support through disability, work or family commitments, or through being geographically isolated or simply because they prefer to remain anonymous, feel embarrassed by their problem or find it difficult to discuss an issue face-to-face. For others, the opportunity to connect to similar others and seek support at any time of the day or night, 7 days a week is very helpful.
What do we know about the experience of online self-help and peer support?
In many ways, technology has progressed at a much quicker pace than has research in the field. That said, we now see a growing number of researchers across the globe exploring different aspects of online self-help and peer support. This is wonderful as the more research we can undertake then the more we can find out about how best to support patients!
For me, personally, one of the most common questions I am asked by health professionals is about the negative side of online self-help and peer support. In particular, many health professionals unfamiliar with these online support venues are concerned that all the information exchanged between members is incorrect, unhelpful, misleading and dangerous. I must stress, though, not all health professionals feel this way but there are many who do and it is our collective responsibility to undertake research so that we can provide an evidence based response to such questions and concerns. This is why one strand of my research programme has sought to consider the ‘downside’ of online self-help and peer support though I am not alone in my efforts.
What are the negatives?
It is probably fair to say that the evidence for all information exchanged between online self-help and peer support group members being incorrect is simply not there. To some extent, there will always be some factually incorrect information but the evidence we have is that it is only a very small percentage of the actual content that may be incorrect. This is a far cry from concerns that everything that is said is wrong or unhelpful. Indeed, with the growing number of online groups using multiple moderators, together with active peer review by members themselves, we see fewer and fewer instances of blatantly wrong information being left online. This is good news!
However, there are some other potential disadvantages that may be encountered by patients going online to seek support from similar others. From my research, we have found that there still remain some potential difficulties but many of these can be addressed by active moderation. For example, some patients report that they post a message seeking support but days and weeks later they have not received a reply. Other concerns expressed by patients are that such online groups are ‘too negative’ and all they read about is the negative impact of a particular disease. In such instances, online groups may wish to actively promote ‘success stories’ or create spaces through which patients can share good news stories etc. Similarly, some patients may have just received a diagnosis and through reading stories online learn about the experiences of others and this may cause anxiety and fear. The problem with this scenario is that patients may not realise that what happened to one person may not happen to them and ‘one size does not fit all’.
Despite these potential problems, online self-help and peer support can be very helpful and a ‘lifeline’ to people who need help. We have witnessed a marked increase in scientific papers describing the potential benefits to members but we must acknowledge that there still remains a lack of randomised controlled trials in this area. Nevertheless, for those patients who choose to engage with such online groups, then the advantages outweigh the disadvantages and at the end of the day patients will ‘vote with their feet’. If they don’t like the group then they will simply not access it again.
There is much to be done to fully understand the online experience of patients choosing to engage with online self-help and peer support groups. As a community of health professionals and researchers we need to spend more time considering how the social media landscape is changing and the impact this has on individuals affected by illness. There is a huge number of possibilities that the Internet, social media and social networking offers us and the challenge is to be able to harness that potential and design and evaluate online interventions that are meaningful to patients.
What is your opinion
What are the most important ingredients of a successful online self-help and peer support group?
Are there any disadvantages that you have witnessed?
How should we integrate online support into traditional face-to-face healthcare delivery?
I am looking forward to your comments!
Selected articles written/co-authored by Neil
Attard, A., & Coulson, N. S. (2012). A thematic analysis of patient communication in Parkinson’s disease online support group discussion forums. Computers in Human Behavior, 28(2), 500–506. doi:10.1016/j.chb.2011.10.022
Bartlett, Y. K., & Coulson, N. S. (2011). An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. Patient Education and Counseling, 83(1), 113–9. doi:10.1016/j.pec.2010.05.029
Coulson, N. S., & Shaw, R. L. (2013). Nurturing health-related online support groups: Exploring the experiences of patient moderators. Computers in Human Behavior, 29(4), 1695–1701. doi:10.1016/j.chb.2013.02.003
Holbrey, S., & Coulson, N. S. (2013). A qualitative investigation of the impact of peer to peer online support for women living with polycystic ovary syndrome. BMC Women’s Health, 13, 51. doi:10.1186/1472-6874-13-51