George Peat, PhD student based in the School of Healthcare, University of Leeds. Interested in predominantly qualitative research that explores perceptions of the self, @gpeat1

Join our EBN Twitter Chat on Wednesday the 7^th of March 2018, 8-9pm UK time, which will focus on social media as a psychosocial support for young people with life limiting conditions. Participating in the Twitter chat requires a Twitter account; if you do not already have one you can create an account at www.twitter.com. Once you have an account contributing is straightforward, you can follow the discussion by searching links to #ebnjc (the EBN chat hash tag) and contribute by sending a tweet (tweets are text messages currently limited to 140 characters), you need to add #ebnjc to your tweet as this allows everyone taking part to view your tweets.

Identity or ‘the self’ are psychological phenomena that many have tried to understand, theorise, and make sense of over time. We may ask questions of ourselves such as who am I, or what characteristics make me who I am? We may also ponder how others perceive us, or what parts of our self do others see? For a young person with a life limiting condition, the answers to these questions can often be distorted and unclear. The longevity of a life limiting condition can result in a gradual intrusion of an illness onto a young person’s identity, to the point where the illness is perceived as an internalised part of the self (Brown, Sourkes, 2006). This is often confounded by engagement with healthcare professionals often taking on an illness specific, as oppose to person specific dynamic leading the young person to feel further hidden by their condition. Furthermore, periods away from educational and social environments, due to illness relapses and undergoing treatments, can often deprive a young person the opportunity to showcase the diverseness and richness of their identities.

Social media is emerging as a way in which young people may be able to mobilise their identities. Social media may be thought of as internet-based tools that facilitates communication between individuals and communities, to disseminate information, ideas, messages, images, and other content, and often collaborate with other users in real time (Ventola, 2014).  Current research in this area suggests that young people may use social media to connect and receive support from others (Donovan et al, 2014), feel empowered (Nesby & Salamonsen, 2016), and share their narrative (Keim-Malpass & Steeves, 2012).However, research is lacking in understanding how social media may impact the identities of young people with life limiting conditions. For example, does it allow young people with life limiting conditions to display aspects of their identity that maybe less salient in different environments?

From a health care professional stand point, policy put forward by the National Institute for Health and Care Excellence (2017) on end of life care places emphasis on the need for emotional and psychological support for young people receiving palliative care. As such, an awareness of the potential avenues to deliver and provide such support is important.  I would like to use this twitter chat to open discussion on the following questions:

1. How important/recognised is psychosocial support in the care plan of a young person with a life limiting condition?
2. Can researchers/health care professionals better understand the identities of young people with life limiting conditions through social media?
3. Is there a requirement for further understanding on how young people with life limiting conditions may use social media and the resources available to them?
4. How can we better facilitate the capacity for young people with life limiting conditions to mobilise their identities?

References

Brown, M. R., & Sourkes, B. (2006). Psychotherapy in paediatric palliative care. Child & Adolescent Psychiatric Clinics of North America. 15 (3), 585-596

Donovan, E. E., LeFebvre, L., Tardiff, S., Brown, L. E., Love, B. (2014). Patterns of social support communicated in response to expressions of uncertainty in an online community of young adults with cancer. Journal of applied communication research. 42 (4). 432-455

Keim-Malpass, J., & Steeves, H, R. (2012). Talking with death at a diner: Young women’s online narratives of cancer. Oncology Nursing Forum. 39 (4). 373-378.

National Institute for Health and Care Excellence (2017). End of life care for infants, children and young people. Retrieved 13th October 2017, from https://www.nice.org.uk/guidance/qs160

Nesby, L., & Salamonsen, A. (2016). Youth blogging and serious illness. Medical Humanities. 42. 46-51.

Ventola, C. L. (2014). Social media and health care professionals: benefits, risks, and best practices. Pharmacy and Therapeutics. 39 (7). 491.