What does the term ‘survivor’ mean to individuals diagnosed with a haematological malignancy? Findings from Australia
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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.
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.
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.
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.
KeywordsHaematological malignancies Survivorship Qualitative research Supportive care
The authors would like to thank the IPP-SHR team for their contribution to the study including Ms Nicole Rawson-Huff, Ms Bo McGrath, Mr Michael Bouwman, Ms Mary Anne Patton and Mrs Emma Phillips; and also Mrs Barbara Hartigan, Ms Beverley Mirilo and Mrs Maryanne Skarparis from the Leukaemia Foundation of Queensland. The authors would like to thank CQUniversity where the data were collected and Griffith University where the findings were analysed and written up.
Conflict of interest
The authors have no conflict of interest with regard to funding or authorship.
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