Social networks and mechanisms for self-help or peer support
The main synthesis of findings and concepts appears in Table
3. The available evidence suggests that people with a diagnosis of schizophrenia use the Internet primarily as a forum for disclosure and as a means of gathering information about their symptoms and treatment. In the case of self-help, it is not always clear whether there are actually social networks in operation, or whether a more useful conceptualisation might simply consist of isolated individuals accessing information in order to help them in their daily lives and dealings with medicine. In a recent review of the role of social networks in chronic illness, a typology distinguished between dyadic relationships, affective communities and “networks of networks.” For people with a diagnosis of schizophrenia however, dyadic relationships and “affective communities” are problematic, as both involve a “level of expectations and pressure to conform” [
42]. It is precisely these expectations and pressure that may make the 'anonymous’ Internet a more suitable place for people with a diagnosis of schizophrenia. The schema previously referred to also suggests that “networks of networks” are larger and more associated with better health outcomes than smaller ones [
42]. This presents problems for people with a diagnosis of schizophrenia, as the (scant) findings above suggest a possible inverse relationship between the amount of time spent on-line and the number of real life friends. This would suggest that our current understanding of social networks in illness management needs to become multi-dimensional so that it may simultaneously incorporate 'real’ networks in geographical space, 'virtual’ networks in cyberspace as well as the inevitable intersect between the two. This finding also supports that found in an RCT of off-line peer support, where the intervention did not lead to social network benefits that went beyond the other study participants [
18].
Table 3
Engagement, internet & peer support in schizophrenia
Particular social groups (e.g. employed, educated females) | Internet as a social resource | Improves access to services |
[ENGAGEMENT] |
Self-esteem and self-validation | Internet as social leveller; | Erosion of professional roles |
Anonymity, absence of hierarchy |
[ENGAGEMENT] |
Emotional and personal distance | Reduces Inter-personal Deficits | Management and Moderation |
[ENGAGEMENT] |
For help with daily problems | Information as social capital | Maintain professional power |
[EMPOWERMENT] |
Ambivalent needs for information | Uncontrollable amount of information | Internet as portal to misinformation and danger |
[REGULATION] |
Symptom exacerbation | A means of surveillance, monitoring and control | Information collected for clinical prerogatives |
[SURVEILLANCE] |
In social networking terms, the different technology groups covered by this review offer different opportunities. The 'smart’ medication bottles mainly serve the purpose of providing remote data to clinicians. To date, handheld devices have been used for similar purposes, although they could be used for peer-to-peer support, as proposed in a protocol for an exercise study [
43]. In social networking terms, only Internet sites – whether 'open’ or 'closed’ – incorporating bulletin boards, forums or chat rooms can offer opportunities for social networking. However, given that the primary social capital of the Internet for people with a diagnosis of schizophrenia concerns information, it is a moot point whether or not people, say, reading each others’ illness blogs constitutes a form of active or ongoing social networking that might be harnessed for contact and support. Answers to such questions will require future research.
A qualitative study of mobile-phone based clinical assessment for psychosis recently published in this journal found that whilst the use of mobile and smart phones were “well integrated” into users’ everyday activities, “In some cases mobile-phone assessment led to a preoccupation with ones thoughts, and comparisons between the individual’s real, desired and past mental states.” Repetitiveness was further identified as a “likely barrier to long-term adoption” [
44]. These results further point to the balance of benefit to the amount of time spent completing 'tasks’ related to ICT interventions and the possibility of over-use engendering detrimental preoccupations related to symptoms and mood state.
A potential benefit of the 'closed’ or moderated/controlled approach could be that it facilitates a form of close virtual “geodesic distance”[
45] that might more easily transfer positive health or psychological benefits, including relief, reassurance and better coping strategies. Unfortunately, these outcomes were not considered in the RCT of a closed web site, which was solely concerned with symptoms and knowledge of schizophrenia. In terms of understanding how social networks can impact on illness management there is a need for an understanding of how 'distance’ operates in virtual networks and whether there are more useful understandings of social connections that go beyond simple notions of geographical distance.
There is growing recognition of the potential benefits of access to telehealth for mental health users [
5] and of the work undertaken by users in relation to embedding and adapting to the potential of these interventions [
46]. Exploring and utilising social networking to support the clinical and everyday self-management and activities of people has been recognised, but less so in relation to mental health. We explored these issues in this synthesis and found that the opportunities offered by the technologies need to be considered in light of factors relating to engagement, empowerment, regulation and surveillance. Particular groups of people with a diagnosis of schizophrenia come to the Internet for help with daily problems, self-esteem and self-validation. They did so because the Internet is a useful communication medium to engage mutual support whilst maintaining a degree of emotional and personal distance. The findings suggest that in line with considering the off line service response, diagnosis
per se is relatively irrelevant. Rather, specifiable behavioural risks (to self and others) perceived by users and clinicians on the one hand, and patient centredness or empowerment on the other, are of most relevance in considering user engagement. The dominance given to technological issues and a pre-occupation with traditional clinical considerations suggests that the potential of telehealth in terms of social support, networking and utility to users has not to date featured significantly enough.
The supposed alienating and isolating features of the Internet make it a useful networking tool for people with a diagnosis of schizophrenia. Whilst it has been shown that the transmission of happiness along social networks is to a significant degree dependent on proximity [
45], the available evidence might suggest that some people with a diagnosis of schizophrenia are not using the Internet for emotional reasons, with the notable exception of disclosure, although further research is clearly indicated here (see also below). If things get 'too emotional’ then symptom exacerbation may be the result. Thus, in this instance, emotional geodesic distance may be of therapeutic benefit when the aim is to access information about services, medications and one’s condition. The offline growth in the users’ movement may also allow for more online development of mutuality and support in relation to the monitoring, interpretation and management of mental health related problems. In these terms, the results of this synthesis around technological engagement match those found in a study of refugee women in the UK, where the outcomes of engagement included psychological empowerment and the development and maintenance of personal identity [
47]. Thus, there may be a distinction (or differences in outcomes or side-effects) between interventions focused purely on access to information or peer networks, when compared with those focused on therapeutic or clinical intervention or monitoring.
A further tension exists between the stereotypical (or real) view that people with psychotic disorders may pursue a solitary existence, and the evidence across the literature that the groups who are accessing on-line services, contain proportionately more women, more formally well educated people, more likely to be employed and in relationships with others. This realisation begs questions about the nature of services, the social construction of increased accessibility, and the possible ratio of threats to benefits that telepsychiatric interventions might hold for different populations. More importantly, this further underlines the questions that remain about the relationship between offline and online social networks and wider assets and resources. For example, the biases in the samples of included studies point to ICT interventions as being disproportionately utilised by people who may already be richer than other people with a diagnosis of schizophrenia in terms of social assets and network connections.
Limitations
The limits of the search strategy in different databases could mean that some relevant studies may have been missed. The incorporation of material from editorials and correspondence is novel; to our knowledge the first time such material has been brought into a systematized review. However, given that this may be contentious to some readers, this material was collected and analyzed separately from the main synthesis. Finally, although we were mainly concerned with the findings contained in the included studies, we have interpreted this material partly according to our own research interests in social networks and peer support. Given that most of the studies we found were not principally concerned with social networks or peer support, however, the findings of our efforts need to be considered principally as an agenda for future research. The added value of our approach when compared with other styles of review or synthesis is that we have been able to point to the relevance of themes for assessment in future studies, such as subjective perceptions of surveillance or control, the capacity for health-related information to cause harms as well as benefits and a need to disentangle the effects of technologies from those of interventions.