The Heaviest Burdens and Life’s Most Intense Fulfilment: A Retrospective and Re-understanding of My Experiences with Childhood Liver Disease and Transplantation
This chapter presents a personal reflection on my childhood with liver disease, including thoughts on going to school with chronic illness, my family and undergoing transplantation.
The chapter is presented under the framework set out at the beginning of the chapter regarding burdens as fuel, and under that framework is a narrative retelling of childhood illness and new understandings of those experiences through reflection and consultation with literature.
Changes suggested include more engagement between medical and educational staff that work with children and their families who have chronic illnesses and better training for teachers who have chronically unwell pupils, so they are prepared to support them appropriately. Much lower tolerance in schools for any sort of bullying and effective protocols for dealing with bullying are also suggested.
- Association for Psychosocial Studies. (2017). Association for Psychosocial Studies. Available from: http://www.psychosocial-studies-association.org/about/. Accessed 17 July 2017.
- BBC One. (1963, November 23). Doctor Who [TV]. BBC One.Google Scholar
- Cavet, J. (2000). Children and Young People with a Hidden Disability: An Examination of the Social Work Role. British Journal of Social Work [online], 18, 619–634.Google Scholar
- Children’s Liver Disease Foundation. (2012). Going to School some thoughts…. 30 December 2015.Google Scholar
- Children’s Liver Disease Foundation. (2013). Biliary Atresia. 11 November 2015.Google Scholar
- Children’s Liver Disease Foundation. (n.d.). Bullying. 1 May 2016.Google Scholar
- Clark, C. D. (1998). Childhood Imagination in the Face of Chronic Illness. In J. de Rivera & T. R. Sarbin (Eds.), Believed-In Imaginings: The Narrative Construction of Reality [online] (pp. 87–100). Washington DC: American Psychological Association.Google Scholar
- Crociani-Windland, L. (2009). How to Live and Learn: Learning, Duration and the Virtual. In S. Clarke & P. Hoggett (Eds.), Researching Beneath the Surface: Psycho-Social Research Methods in Practice (pp. 51–78). London: Karnac.Google Scholar
- Greenwood, J. (2010). Holism [online]. In M. Baldwin & J. Woodhouse (Eds.), SAGE Key Concepts: Key Concepts in Palliative Care. London: Sage UK. Available from: http://search.credoreference.com/content/entry/sageukjlcz/holism/0. Accessed 19 Jan 2016.
- Hopkins, L., Green, J., Henry, J., Edwards, B., & Wong, S. (2014). Staying Engaged: The Role of Teachers and Schools in Keeping Young People with Health Conditions Engaged in Education. Australian Association for Research in Education [online], 41, 25–41. Accessed 11 Dec 2015.Google Scholar
- Hunt, J., Hames, A., & Malan, J. (2014). Young Person Mentoring Handbook. London: The Institute of Liver Studies and Kings College Hospital.Google Scholar
- Kundera, M. (1984). The Unbearable Lightness of Being. London: Faber and Faber.Google Scholar
- Lowton, K. (2011, November 11). Adult Survivors of Childhood Liver Transplantation [News on webpage]. Available from: http://www.kcl.ac.uk/sspp/news/newsrecords/lowton.aspx. Accessed 30 Dec 2015.
- Lymphoma Association. (2016). Lymphoma Association. Available from: https://www.lymphomas.org.uk/about-lymphoma/types/post-transplant-lymphoproliferative-disorder-ptld. Accessed 17 July 2017.
- Mauss, M. (2002). The Gift: The Form and Reason for Exchange in Archaic Societies. London: Routledge Classics.Google Scholar
- McLaughlin, H. (2007). What’s in a Name: ‘Client’, ‘Patient’, ‘Customer’, ‘Consumer’, ‘Expert by Experience’, ‘Service User’—What’s Next? The British Journal of Social Work [online], 39(6), 1101–1117. Accessed 10 Jan 2016.Google Scholar
- Medical Notes. (1989a). The author can be contacted through the editors regarding these sources, as they are private hospital notes and not publicly available.Google Scholar
- Medical Notes. (1989b). As above.Google Scholar
- Medical Notes. (1996). As above.Google Scholar
- Mieli-Vergani, G., & Vergani, D. (2009). Auto Immune Hepatitis. In F. J. Suchy, R. J. Sokol & W. F. Balistreri (Eds.), Liver Disease in Children [online] (3rd ed., pp. 447–458). Cambridge: Cambridge University Press. Accessed 17 Dec 2015.Google Scholar
- Nabors, L. A., Little, S. G., Akin-Little, A., & Iobst, E. A. (2008). Teacher Knowledge of and Confidence in Meeting the Needs of Children with Chronic Medical Conditions: Peadiatric Psychology’s Contribution to Education. Psychology in the Schools [online], 45(3), 217–266. Accessed 17 Dec 2015.Google Scholar
- Nuffield Orthopaedic Centre NHS Trust. (2006). What Is a Hickman? [online]. 1 May 2016.Google Scholar
- Petrov, R. (2009). Autobiography as a Psycho-Social Research Method. In S. Clarke & P. Hoggett (Eds.), Researching Beneath the Surface (pp. 193–213). London: Karnac.Google Scholar
- Roux, A. L. (2009). Examining Teacher Knowledge and Attitudes About School Issues for Children with Epilepsy: A Mixed-Method Investigation. PhD. University of Florida.Google Scholar
- Sacks, O. (2010). Face Blind. In O. Sacks (Ed.), The Mind’s eye (pp. 82–110). London: Picador.Google Scholar
- Schaffer, H. R. (2004). Introducing Child Psychology. Oxford: Blackwell Publishing.Google Scholar
- Shildrick, M. (2015). Staying Alive: Affect, Identity and Anxiety in Organ Transplantation. Body and Society [online], 21(3), 1–22. Accessed 1 May 2016.Google Scholar
- Shildrick, M., McKeever, P., Abbey, S., Poole, J., & Ross, H. (2009). Troubling Dimensions of Heart Transplantation. Journal of Medical Humanities [online], 35(1), 35–38. Accessed 26 Jan 2016.Google Scholar
- Taylor, R. M. (2008). Health-Related Quality of Life in Young People After Liver Transplantation. PhD. Kings College London.Google Scholar
- The Health Foundation—Inspiring Improvement. (2011). Can Patients Be Teachers? Involving Patients and Service Users in Healthcare Professionals’ Education. Available from: http://www.health.org.uk/sites/default/files/CanPatientsBeTeachers.pdf. Accessed 11 Jan 2016.
- Winnicott, D. W. (1971). Playing and Reality. London: Tavistock Publications.Google Scholar