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Addressing the elephant in the room: Social media and the needs of adolescents and young adults with cancer to talk about death

Conference contribution
Authors Ylva Hård af Segerstad
Stefan Nilsson
Peter Sand
Published in The Fourth International Death Online Research Symposium, 15-17 August, 2018, Hull University, Hull, UK.
Publication year 2018
Published at The Linnaeus Centre for Research on Learning, Interaction, and Mediated Communication in Contemporary Society (LinCS)
University of Gothenburg Centre for person-centred care (GPCC)
Department of Applied Information Technology (GU)
Institute of Neuroscience and Physiology, Department of Psychiatry and Neurochemistry
Institute of Health and Care Sciences
Language en
Subject categories Health Sciences, Human Aspects of ICT


Attitudes to death and dying are culturally bounded and change over time [1]. In everyday life in most contemporary Western societies, we personally rarely encounter death, which allows us to avoid thinking about it [2]. It seems that we have lost an ancient intimacy with death which we used to have in the preindustrial era [3-5]. However, being diagnosed with a life-threatening illness pronounces a need to come to terms, or cope, with death. Opportunities to talk about these matters, can increase possibilities to manage negative stress and anxiety in the face of death, and ultimately, to increase quality of life [6, 7]. Adolescents and young adults (AYA) diagnosed with cancer often lack fora where they can approach thoughts about death and dying, and health care professionals are not always able to support them [8]. Our previous research on bereaved parents’ use of social media for coping with their loss has shown that communities on social media and peer-support offer platforms and contexts in which members can explore and share their experience of loss and learn from their peers (cf. [9, 10]). In a newly proposed project we will explore the needs of AYA with cancer to address the elephant in the room, as it were, and develop digital tools and contexts to support this. In February 2018, we conducted an anonymous online survey targeting members in a support organisation for young adults diagnosed with cancer (N = 147). Based on the results from our previous studies, we used a directed approach to content analysis [11] to guide our analysis of the open-ended question. Results confirm our previous findings: both groups report having scarce opportunities to talk about death in their everyday life but that there is a need to do so. Peer-support and social media may support both groups in coping with stress and anxiety. However, the present study indicates that the category which seems to be in greater need is those living close to a person diagnosed with cancer, rather than the person living with the disease. References 1. Hviid Jacobsen, M., “Spectacular Death”—Proposing a New Fifth Phase to Philippe Ariès’s Admirable History of Death. Humanities, 2016. 5(2). 2. Brotherson, S.E. and J. Soderquist, Coping with a Child ' s Death. Journal of Family Psychotherapy, 2002. 13(1-2): p. 53-86. 3. Englund, P., På slagfältet vid Verdun och andra historiska nedslag. 2000: Bonnier Audio. 4. Walter, T., Modern grief, postmodern grief. International Review of Sociology. International Review of Sociology / Revue Internationale de Sociologie, 2007. 17(1): p. 167-78. 5. Walter, T., What Death Means Now:Thinking Critically About Dying and Grieving. Shorts Insights. 2017: Policy Press. 140. 6. Quinn, G.P., et al., Quality of life in adolescent and young adult cancer patients: a systematic review of the literature. Patient related outcome measures, 2015. 6: p. 19. 7. Park, E.M. and D.L. Rosenstein, Depression in adolescents and young adults with cancer. Dialogues in clinical neuroscience, 2015. 17(2): p. 171. 8. Stayer, D. and J.S. Lockhart, Living with dying in the pediatric intensive care unit: a nursing perspective. American Journal of Critical Care, 2016. 25(4): p. 350-356. 9. Christensen, D.R., et al., Bereaved Parents’ Online Grief Communities: De-Tabooing Practices or Relation-Building Grief-Ghettos? Journal of Broadcasting & Electronic Media, 2017. 61(1): p. 58-72. 10. Hård af Segerstad, Y. and D. Kasperowski, A community for grieving: affordances of social media for support of bereaved parents. New Review of Hypermedia and Multimedia, 2015. 21(1-2: Online Memorial Cultures): p. 25-41. 11. Hsieh, H.F. and S.E. Shannon, Three approaches to qualitative content analysis. Qual Health Res, 2005. 15(9): p. 1277-88.

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