I love the Internet and all the positives it represents. Even so, I often take it and the near ubiquitous benefit it offers for granted.
How many of us can really remember Life Before The Internet? How did we procrastinate effectively before @EmrgencyKittens? How did we keep in touch, inform others of our lunch habits and make 500 new ‘friends’ in the period between the carrier pigeon and email?
Quite simply, the Internet has revolutionised the way many of us live our lives, from how we do our weekly shop and book cinema tickets to how we experience illness and seek out information, support and human contact.
Social networks and psychosis
The virtual reality of the Internet has paradoxically enabled us to expand our real social networks and it is this potential for developing meaningful contact with others that is of particular interest to those working with people with psychosis, whose social networks are frequently smaller and less robust when compared to the general population.
Reduced social interactions in people with psychosis are related to a number of factors, including:
- Symptom-specific characteristics (e.g. withdrawal, paranoia)
- Deficits in non-verbal communication (e.g. problems engaging with social cues)
- Negative social impact of illness (e.g. unemployment or stigma)
Online social networking may offer valuable opportunities to create social bonds for people with psychosis. However, there is also concern that many people are not aware of how to use the Internet safely and that reliance on the Internet may lead to reduced motivation to maintain real-world contacts.
In this systematic review, Highton-Williams et al. explored the evidence relating to the use of online social networking in people with psychosis with the aim of developing a better understanding of whether online social networking is used by people with psychosis and how it may be integrated into strategies aimed at increasing social support.
Their research questions were:
- What are the existing data on the use of online social networking in people with psychosis?
- Has any difference been identified between people with psychosis and other clinical/non-clinical populations?
- For what purposes do people with psychosis use online networking?
- The researchers systematically searched through electronic databases: MEDLINE, Embase, PsycINFO, Web of Knowledge, the British Nursing Index and CINAHL.
- They included studies examining the use of online social networking by people with a diagnosis of psychosis or bipolar disorder.
- Studies were included if they explored any type of online social networking (defined as any social interaction occurring online), on any type of online social networking site (SNS), with the exception of interactions between participants and mental health professionals.
- Similarly, studies were excluded if they examined online psychological or psychosocial interventions (including exclusion of online interventions with a social networking component).
- A total of 2,780 records were retrieved, with 64 full-text papers examined.
- 11 studies reported data on online social networking of people with psychosis, published between 2005 and 2013.
- Study designs included case reports, observational and qualitative designs.
- The total number of patients with psychosis assessed in 9 of the 11 included studies was 1,189. Two studies did not report numbers of individual patients assessed.
- Broadly, the studies suggest that people with psychosis use the Internet more frequently than control groups for the purposes of social networking, spending more time in chat rooms or online games. However, Internet usage and SNS participation rates were highly variable.
- Reasons for using online social networking were identified as:
- Establishing new relationships
- Maintaining relationships/reconnecting with people
- Online peer support
- Some studies suggested that people with psychosis may find e-mail or Facebook less preferable than other online social networking tools. Online networking through e-mail and Facebook may be used predominately to connect with an existing social network.
- Little evidence was found of risks relating to online social networking (e.g. increased isolation, bullying). However, the reviewers were keen to point out that risk was not a primary research question of their review and that this is therefore an area requiring more systematic exploration.
- Communication difficulties of people with psychosis in establishing and maintaining social networks may not constitute significant hurdles to online social networking.
- Online forums or chat rooms could facilitate the establishment of new social relations for patients who have fewer offline contacts.
- Online social networking could be used alongside standard befriending schemes.
- Key questions should be addressed with experimental studies, that is:
- What is the best social networking tool to be used for people with psychosis in terms of benefits/risks profile?
- Whether (and which kind of) online social contacts can become supportive offline relationships?
This is the first systematic review of the available international literature on the use of online social networking of people with psychosis. However, the authors are keen to point out significant limitations, namely:
- The heterogeneity of the study designs, which allowed only narrative review;
- The reliance upon self-reported diagnosis in some of the included designs;
- The authors’ own decision to collapse schizophrenia-related disorders and bipolar disorders into a convenient ‘psychosis’ group.
These limitations (particularly the latter) should not be underestimated. Heterogeneity of study design is a real problem in digital research and is a game changer in the way it precludes being able to draw confident conclusions (e.g. Alvarez-Jiminez et al, 2014).
Teasing apart key differences in Internet access and usage is widely acknowledged to be an important part of digital research and appropriate and effective tailoring of online resources is an integral part of adherence and engagement with any form of online intervention (e.g. Dutton & Blank, 2013; Webb et al., 2010).
If the aim of such a review is to try and determine the role of online social networking in self-management strategies for those with psychosis, it is crucially important to know specifically what works when and for whom.
As a consequence of these limitations, the authors have to speculate about what some of the individual differences might be that influence online social networking in clinical and non-clinical populations. They refer to the availability and accessibility of the Internet, co-morbid social anxiety and differences in the ways in which people interpret the anonymity of online social networks.
- This review echoes a recent report on the high rates of Internet usage amongst those living with chronic, multimorbid or unusual illnesses (Pew Research Centre, 2013). Although often having reduced access to the Internet (e.g. only at home as opposed to at work and socially), this key group is online significantly more and often much more engaged with their own health than other patient groups, as much of their online activity is related to their health and information and support seeking.
- In reality, the idea of the digital divide is a diminishing concept – smartphone access is pretty much ubiquitous and if anything, a new form of digital divide is emerging between 2.0 and 3.0 users, that is, between ‘regular’ use of email, online shopping and the Internet in general and those who also produce online content. In my experience as a mental health support worker at Rethink, access to the Internet was not necessarily a defining difference: larger concerns existed around people’s ability to evaluate information and understand the importance of online etiquette, security and privacy.
This is an emerging research field and this review makes an important contribution to it. However, it raises as many questions as it answers and highlights the importance of more in depth, targeted empirical and qualitative work. More research needs to be conducted on the specifics of how to best facilitate social networking in vulnerable groups and for what purpose – simply getting online is not enough.
Highton-Williamson E, Priebe S & Giacco D. (2014). Online social networking in people with psychosis: A systematic review. International Journal of Social Psychiatry 1–10 [Abstract]
Alvarez-Jimenez M, Alcazar-Corcoles M, González-Blanch C, Bendall S, McGorry PD, & Gleeson JF. Online, social media and mobile technologies for psychosis treatment: a systematic review on novel user-led interventions. Schizophr Res. 2014 Jun;156(1):96-106. [Abstract]
Dutton WH, Blank G. Cultures of the internet: the internet in Britain. Oxford Internet Survey 2013 Report. Oxford: Oxford Internet Institute, University of Oxford, 2013. [PDF]
Webb TL, Joseph J, Yardley L, Michie S. Using the internet to promote health behavior change: a systematic review and meta-analysis of the impact of theoretical basis, use of behavior change techniques, and mode of delivery on efficacy. J Med 2010; 12(1): e4
Pew Research Center, November 2013, “The Diagnosis Difference” [PDF]
Facts and figures, Ofcom 2014.