Pam McGrath1, Hamish Holewa. 1. International Program of Psycho-Social Health Research, Centre of National Research on Disability and Rehabilitation Medicine, Griffith Health Institute, Griffith University, LO5, Level 1, Logan Campus, Meadowbrook, Logan City, QLD 4131, Australia. pmcgrathgu@gmail.com
Abstract
PURPOSE: The use of the word 'survivor' is now widely accepted in academic and clinical oncology culture. However, despite such prevalence, there is limited research exploring the meaning of the term survivor for the very individuals to which the term is applied. The article provides insights on the term survivor from a sub-set of findings taken from a Queensland study exploring the experience of survivorship for individuals diagnosed with a haematological malignancy. METHODS: The qualitative study involved in-depth interviews with 50 individuals diagnosed with a haematological malignancy. The interviews were transcribed verbatim, coded and then analysed thematically. RESULTS: The results indicated that the majority of participants actively disliked the term and did not embrace the notion of survivor in their post-diagnosis identity. Only a small number actively embraced the term. CONCLUSION: The word survivor had a multiplicity of meanings depending on the individual interpretation of the term. RELEVANCE OF MANUSCRIPT TO INFORM RESEARCH, POLICIES AND/OR PROGRAMMES: The clear message from the research is that the term survivor needs to be used with care and sensitivity. The strong recommendation is that caution should be used when applying the term to individuals diagnosed with a haematological malignancy. The naming of support groups and newsletters should be sensitive to the wide range of meanings that individuals bring to this term. Indeed, the findings indicate that many do not identify with the term and require a more appropriate language to respond to their supportive care needs.
PURPOSE: The use of the word 'survivor' is now widely accepted in academic and clinical oncology culture. However, despite such prevalence, there is limited research exploring the meaning of the term survivor for the very individuals to which the term is applied. The article provides insights on the term survivor from a sub-set of findings taken from a Queensland study exploring the experience of survivorship for individuals diagnosed with a haematological malignancy. METHODS: The qualitative study involved in-depth interviews with 50 individuals diagnosed with a haematological malignancy. The interviews were transcribed verbatim, coded and then analysed thematically. RESULTS: The results indicated that the majority of participants actively disliked the term and did not embrace the notion of survivor in their post-diagnosis identity. Only a small number actively embraced the term. CONCLUSION: The word survivor had a multiplicity of meanings depending on the individual interpretation of the term. RELEVANCE OF MANUSCRIPT TO INFORM RESEARCH, POLICIES AND/OR PROGRAMMES: The clear message from the research is that the term survivor needs to be used with care and sensitivity. The strong recommendation is that caution should be used when applying the term to individuals diagnosed with a haematological malignancy. The naming of support groups and newsletters should be sensitive to the wide range of meanings that individuals bring to this term. Indeed, the findings indicate that many do not identify with the term and require a more appropriate language to respond to their supportive care needs.
Authors: Bronwyn A Morris; Stephen J Lepore; Bridget Wilson; Morton A Lieberman; Jeff Dunn; Suzanne K Chambers Journal: J Cancer Surviv Date: 2014-04-05 Impact factor: 4.442