By Jo Hope (née Belcher)
Although use of the Internet in the UK has become widespread (Dutton and Blank, 2013), our attitude toward online interactions and information seeking remains complex. There are utopian and dystopian approaches towards our use of ‘new’ media that have remained remarkably resistant to criticisms. These themes run through research and wider, public discourses relating to discussions about relationships and information sharing.
A popular dystopian discourse with remarkable durability reflects concerns about how the use of social media could be a threat to ‘real’ relationships, conversation and intimacy. Yet concerns about ‘real’ communication and relationships have been expressed about many new forms of communication technology over time and may reflect an anxiety about their novelty rather than inherent properties of the medium (Baym, 2009). In fact there is a body of research that suggests that online interactions are not replacing offline communication, but augmenting it, providing new ways for people to maintain connections (e.g. Wellman et al., 2002). In terms of a greater access to health information there have been fears of people being unable to differentiate between different sources of information and of gaining misleading information and wasting GPs’ time (Koteyko et al., 2015). On the other hand, more utopian perspectives include claims that greater access to the Internet is associated with a democratisation of health knowledge and even the possibility of changing existing power dynamics within health encounters (Nettleton, 2004).
These perspectives can fail to take full account of the continuing social differentiation of the Internet in terms of access and particularly access through mobile devices. In the UK, the Internet is accessed more and in different ways by younger and wealthier people, who also appear to gain greater benefits from health information sourced online (Dutton and Blank, 2013). It is fair to say that there is a lack of appreciation of the wider social nature of our social interactions online, both in terms of how they fit into our wider social contacts and reflect wider social inequalities and differences in society more broadly.
The possibility of connecting geographically dispersed groups nonetheless presents new opportunities. It has been argued that online peer support has particular potential for parents of people with rare syndromes, who have little offline access to peer support and specialised information and advice from health professionals (Gundersen, 2011; Zaidman-Zait & Jamieson, 2007). However, research exploring such benefits has been limited in a number of ways. It has tended to present the experiences of people who choose to be actively engaged in online support either through observations of online interactions or interviews with current users of specific sites. Such research cannot tell us about why and when people disengage (and re-engage) with different sources of online and offline support over time. There has also been a focus on the use of online support sites by parents of children with rare syndromes, who may be more likely to use the Internet and to use it in a different way from parents of adults. Currently little is known about who accesses online peer support and how it fits into wider support relationships and the use of other information sources (Paterson et al., 2013).
My PhD research explored the use of online peer support among a case study group of parents of people with a rare syndrome, Rett syndrome, which has an estimated prevalence of 2500 females in the UK (Neurological Alliance, 2003), with male prevalence much lower and estimates unavailable (Kerr, 2002). I recruited parents through letters to members of a charity, Rett UK and via a wide range of relevant sources of caring-related online support and information. 190 parents completed a survey on their use of the Internet and online support and 20 parents participated in a detailed interview about how they used online peer support as part of their wider caring practices. The survey, although not generalisable to the wider population, suggested that among respondents, younger parents, with younger children and fewer years since diagnosis were more likely to have ever used online peer support, with fewer years since diagnosis associated with gaining greater benefits from online peer support. Wealthier parents were also more likely to have ever read a caring-related blog.
Interestingly, parents who had used the Internet as a source of support and information had usually also used a range of offline sources for the same reasons, such as telephone helplines and local groups. Some interviewees also described how they developed relationships with other parents that moved backwards and forwards between online and offline contexts over time. Within interviews it emerged that the use of online peer support groups in everyday caring practices was dynamic and changed in relation to alternative sources of support (online and offline), child’s current needs, parents’ approach to their child’s diagnosis and their level of caring expertise. Interviewees with adult children therefore tended to have lower information and support needs overall. They reported (as the survey suggested) that online peer support sites were used predominantly by parents of children. Interviewees with adult children reported gaining few benefits from online peer support except keeping abreast of developments in specialist equipment, research and treatment. There was also a suggestion within interviews that while more educated interviewees accessed a range of primary sources of information, less educated parents tended to rely more heavily upon online peer support as a primary source of information.
These findings challenge dominant ideas of the Internet as a replacement for or threat to ‘offline’ interactions or as a democratising force that can erase existing social inequalities and power dynamics. Instead, they suggest the importance of exploring the use of online support and information within a wider social context, taking into account both the impact of wider social differences and the use of the Internet as part of a dynamic approach to information and support seeking that moves between online and offline contexts.
References
Baym, N. K. (2009). A Call for Grounding in the Face of Blurred Boundaries. Journal of Computer-Mediated Communication, 14(3), 720–723. doi:10.1111/j.1083-6101.2009.01461.x
Dutton, W., & Blank, G. (2013). Cultures of the Internet : The Internet in Britain. Oxford Internet Survey 2013. Oxford Internet Institute, University of Oxford.
Gundersen, T. (2011). “One wants to know what a chromosome is”: the internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder. Sociology of Health & Illness, 33(1), 81–95. Retrieved from http://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2010.01277.x/full
Kerr, A. M. (2002). Annotation: Rett syndrome: recent progress and implications for research and clinical practice. Journal of Child Psychology and Psychiatry, 43(3), 277–287.
Koteyko, N., Hunt, D., & Gunter, B. (2015). Expectations in the field of the Internet and health: an analysis of claims about social networking sites in clinical literature. Sociology of Health & Illness. doi:10.1111/1467-9566.12203
Nettleton, S. (2004). The Emergence of E-Scaped Medicine? Sociology, 38(4), 661–679. doi:10.1177/0038038504045857
Neurological Alliance. (2003). Neuro numbers: a brief review of the numbers of people in the UK with a neurological condition. London.
Paterson, B. L., Brewer, J., & Stamler, L. L. (2013). Engagement of Parents in On-line Social Support Interventions. Journal of Pediatric Nursing, 28(2), 114–124. doi:10.1016/j.pedn.2012.05.001
Wellman, B., Boase, J., & Chen, W. (2002). The Networked Nature of Community: Online and Offline. IT & Society, 1(1), 151–165.
Zaidman-Zait, A., & Jamieson, J. R. (2007). Providing web-based support for families of infants and young children with established disabilities. Infants & Young Children, 20(1), 11–25. Retrieved from http://journals.lww.com/iycjournal/Abstract/2007/01000/Providing_Web_based_Support_for_Families_of.3.aspx
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