Background: Haematological cancers encompass a wide and complex cluster of diseases including leukaemia, lymphoma, and myeloma. Each has chronic and acute forms, rendering prognosis varied. Those diagnosed consistently demonstrate poorer psychosocial and survivorship outcomes. However, little is known about the persistent unmet needs of haematological cancer survivors (HCS).
Aim: We aimed to explore the experiences of HCS, specifically leukaemia or myeloma, and to develop a theoretical model of haematological cancer survivorship.
Methods: Inductive qualitative methodology was applied through thematic and framework analysis to two cohorts of haematological cancer survivors (HCS) in Australia. HCS aged >18 years, diagnosed with myeloma or leukaemia as an adult in the past 10 years or >6 months post-initial and active treatment completion or if receiving maintenance therapy >12 months post-diagnosis. Semi-structured telephone interviews were conducted with HCS recruited via social media and cancer advocacy organisations. Transcribed interviews were thematically analysed using framework methods after thematic saturation was achieved in each cohort independently.
Results: We interviewed 52 HCS (leukaemia n=24; myeloma n=28). Across both cohorts we identified four themes: (1) Impact - haematological cancer is complex, chronic and debilitating; (2) Uncertain and never-ending burden; (3) Work is central, coveted, and a struggle; (4) dynamic landscape of coping. Across both cohorts there was a clear meta-theme indicating HCS is recursive and holistic.
Participants described enduring challenges caused or exacerbated by HCS, e.g. complex and fluctuating emotions. Although problem-focused, emotion-focused, and meaning-based coping strategies were used, some felt resigned to their disease identity in the long-term, disrupting coping.
Conclusions: Our results provide novel insights to the existing limited evidence-base, particularly the extensive psychosocial impacts and challenges faced in long term survivorship. HCS would benefit from a holistic, continuum-based approach to developing models of HCS and survivorship services.