‘Until it ends, you never know…’: Attending to the voice of adolescents who are facing the likely death of a parent
Keywords:
Young people, serious illness, communication, death and dying, collaborative inquiryAbstract
AbstractIn contrast to much adult-focused and adult-controlled research on the impact of cancer on families, the author's action research project privileges the voice of young people whose parents were seriously ill. Its key findings, as demonstrated in the DVD they produced, were that the young people: box
Struggled with the sense of isolation and all-pervasive uncertainty inherent in the life-threatening illness of a parent.
boxPreferred support and understanding to protection and prevarication.
boxDisliked delay and deception, preferring to be informed and involved.
boxWished to be told the truth as fully and as soon as possible.
This article focusses particularly on the teenagers in the research group and presents their voices and views unmediated by adult exegesis. The author argues, on the basis of their evidence, that a clearer recognition of the capacities and competences of young people is needed by all who wish to engage with and support those facing the likely death of a parent.References
Alderson, P. 1995. Listening to children, Barking: Barnardos.
Barnes, J. 2000. Qualitative interview study of communication between parents and children about maternal breast cancer. British Medical Journal, 321: 479–482.
Christ, G. 2000. Healing children's grief, Oxford: Oxford University Press.
Chowns, G. 2005. “Swampy ground; brief interventions with families before bereavement”. In Brief interventions with bereaved children, Edited by: Monroe, B. and Kraus, F. Oxford: Oxford University Press.
Chowns G 2006 . ‘No – you don't know how we feel’; researching the expereience of children facing the life–threatening illness of a parent, through collaborative inquiry . Unpublished PhD thesis , University of Southampton .
Chowns G 2007 . ‘NO – You Don't Know How We Feel’ DVD from gpatgc@aol.com
Chowns, G. 2009. End of life care discussions; but not in front of the children?. End of Life Care, 3(1): 41–47.
Crabtree, B and Miller, W. 1999. Doing qualitative research, Sage: Thousand Oaks CA.
Cunningham, H. 2005. Children and childhood in western society since 1500, Harlow: Pearson.
Ferrell, B, Ervin, K, Smith, S, Marek, T and Melancon, C. 2002. Family perspectives of ovarian cancer. Cancer Practice, 10(6): 269–276.
Heiney, S, Bryant, L, Walker, S, Parrish, R, Provenzano, F and Kelly, K. 1997. Impact of parental anxiety on child emotional adjustment when a parent has cancer. Oncology Nursing Forum, 24(4): 655–661.
HMSO 2004 . Children Act . London : HM Stationery Office .
Holland, J and McManus, N. 2005. Lost for words, London: Jessica Kingsley.
Lewis, FM. 2004. Family-focused oncology nursing research. Oncology Nursing Forum, 31(2): 288–291.
Mason, J. 2002. Qualitative researching, London: Sage.
Polit, D, Beck, C and Hungler, B. 2000. Essentials of nursing research: methods, appraisal and utilization, London: Lippincott, Williams and Wilkins.
Reason P , Bradbury H 2008 . Handbook of action research; participative inquiry and practice . London : Sage .
Ribbens McCarthy, Jane 2006 . Young people's experiences of loss and bereavement: towards an interdisciplinary approach . Maidenhead, , UK : Open University Press .
St Exupery, A. 2002. The Little Prince, London: Egmont Books.
Sheldon, F. 1997. Psychosocial palliative care, Cheltenham: Stanley Thornes.
United Nations 1989 . Convention on the rights of the child . Geneva : United Nations .
