Poster Presentation FCIC Survivorship Conference 2013

Survivorship research in Haematology: Findings from Queensland. (#76)

Maryanne Skarparis 1 , Pam McGrath
  1. Leukaemia Foundation of Qld., Dutton Park, Qld, Australia

P. McGrath,1 M. Skarparis,2 B Hartigan.2
1 Griffith Health Institute, Griffith University; 2 Leukaemia Foundation of Queensland.

The Leukaemia Foundation of Queensland recently funded a major study examining the issues associated with survivorship for haematology patients. The research project has provided a wealth of insights to inform the development of supportive care services. A qualitative methodology was used including 50 open-ended interviews and one focus group audio-recorded, transcribed verbatim, coded and thematically analysed. All participants had to meet the criteria for survivorship in that they were an adult individual with a haematological malignancy who was at least one year post-diagnosis. 50 participants (n = 26 male; n= 24 female) participated representative of a range of ages, geographical locations and the major haematological diagnostic groups including Multiple Myeloma (n = 15), Lymphoma (n = 14), Leukaemia (n = 17) and other (n = 4). Of the overall cohort, 11 participants had a Bone Marrow Transplant and 15 had a Stem Cell Transplant (allogeneic and autologous transplants). The findings challenge established ideas of survivorship through an enriched understanding of the meaning of the term survivorship, the importance to patients and their families of keeping the focus on life, and the development of an innovative concept of ‘receptivity’. This presentation will provide an overview of the findings with a particular focus on the innovative strategies documented as important in developing supportive care for these individuals.