Here is some text I perpared for the Children's International e Hospice. the piece was comissioned after our presentation at the ICPCN Buenos Aires conference http://www.icpcnconference.org/wp-content/uploads/2016/06/Learning-to-nurse-dying-children-Randall.pdf
There is also a graphic to go with this which I'll try to upload
the link to the eHospice piece is http://www.ehospice.com/internationalchildrens/ArticleView/tabid/10670/ArticleId/20199/language/en-GB/View.aspx
At the world congress of ICPCN in Buenos Aires, Argentina, this year Joan Marston pointed out that we have some good understanding now about children’s palliative care, what she implored was that we need, through education, to spread the news! We also know that very often professionals don’t feel prepared to confidently deliver palliative and end of life care1.
The lack of confidence is perhaps because nurses have paid very little attention to death and dying. There is hardly any mention of death or dying in the various models or theories of nursing. The disappearance of death and dying from nursing literature means new nurses learning to nurse, see people dying on the wards, in hospices and at home, but don’t have a language or a way to understand these experiences as a part of nursing. There is of course the more specialist literature on palliative and end of life care much of it written by nurses, but it is separated, and marginalised by the very specialisation.
For children the picture is even more obscured. We tried to look for where nurses talk about theories of nursing and children dying2. What we found was that when nurses wrote about children dying and death in childhood they did not relate to nursing theories, but instead gave a list of very practical and helpful advice 3,4,5 ,but which did not connect the concepts on the list together, nor to more general ideas about nursing, and which omitted some important ideas such as mutual pretence (where either a child and or their carers pretend the child is not dying in order to avoid the reality or at least talking about the reality of child’s failing health). The voice of children was not included but rather the lived experience of their carers was cited 6, often the child was lost in a family therapy approach7,8.
Help is at hand however, there is a new theory of children’s nursing, the first to focus on children and their childhoods9. Pragmatic children’s nursing also integrates the nurses response to dying children. Randall9 argues that the eight outcome measures of the theory can be applied to children who are dying, as much to those who we think will become adults. With the focus on how nurses can help children to live a childhood, nurses can work with children and their carers to explore how each child lives his or her childhood irrespective of whether the child will reach maturity. Childhood has a value in and of itself and not just in the making of adults 10. The power of this approach is twofold. Firstly, it provides nurses with a way to talk about what they already do that ensures children get the services and resources they need. Access to play with their peers is an example, often nurses help children living with a life limiting illness to be with their friend to take part in activities. This is helping children to be children. Secondly, pragmatics embraces and celebrates context. Pragmatists11 endorse the many sizes fit different situations, rather than a one size fits all. What this offers is that each unit can adapt the theory to suit their children and the children’s carers, and the conditions they live with. It also allows nurses to continually learn and update their skills as medicine changes and as a new generation of children come forward with new challenges.
Pragmatic children’s nursing is not just a theory for nursing dying children. It attempts to address the needs of all children who have nursing needs. This means that death and dying in childhood for children can come back into the mainstream of children’s nursing. I say come back in because of course children have always died, and nurses have been there. It is just that we have, somewhere lost sight of this fact of life. We have isolated children who die from other children living with serious illness and disability as a special case, when all children living with illness face the possibility of death. By integrating death and dying back into nursing we hope that all nurses will acquire the understanding, skills and confidence to help children and their carers to face the challenges of living with a life limiting or threatening condition and of living a childhood.
- Bassah N, Seymour J and Cox K (2014) A modified systematic review of research evidence about education for pre-registration nurses in palliative care. BMC Palliative care 13:56. doi:10.1186/1472-684X-13-56.
- Randall D, Sepion E and Darlington A.S (2016) Learning to nurse dying children:whatis the use of theory? International Children’s Palliative Care Network 2nd Congress, Buenos Aires, Argentina, Friday 20th May 2016. Available from http://www.icpcnconference.org/wp-content/uploads/2016/06/Learning-to-nurse-dying-children-Randall.pdf
- Price J and McFarlane M (2010) Care of the child requiring palliative care. In Glasper AE and Richardson J (eds) A textbook of children’s and young people’s nursing ( 2nded) Edinburgh, Elsevier.
- Hannan J, Hemsley J and Wenden C (2010) Palliative care . In Macqueen S, Bruce EA and Gibson F(Eds) The Great Ormond Street Hospital manual of children’s nursing practices. Chichester, Wiley Blackwell.
- Price J and McNeilly P (2009) Palliative care for children and families: An interdisciplinary approach. Basingstoke, Palgrave McMillan
- Widger K, Steele R, Oberle K and Davies B (2009) Exploring the supportive care model as a framework for pediatric palliative care. Journal of Hospice and Palliative Nursing 11(4) July/August 209-16. doi 10.1097/NJH.0b013e3181aada87
- Bousso R.S, Misko MD, Mendes-Castillo A.M.C and Rossato L.M (2012) Family Management Style Framework and its use with families who have a child undergoing palliative care at home. Journal of Family Nursing 18(1) 91–122.doi 10.1177/1074840711427038
- Callaghan EE (2007) Achieving Balance: A Case Study Examination of an Adolescent Coping with Life-Limiting Cancer. Journal of Pediatric Oncology Nursing 24(6). doi10.1177/1043454207305296
- Randall D (2016) Pragmatic Children’s Nursing: A theory for children and their childhoods. Abingdon, Routledge.
- Corsaro WA (2012) The Sociology of Childhood, 3rd Thousand Oaks California. Pine Forge Press; Sage.
- Murphy PJ (1990) Pragmatism from Peirce to Davidson. Colorado, West View Press.