Background Haematological cancers are a unique group of cancers. Treatment is aggressive and complex, resulting in debilitating side effects from multi-modal therapies and disease-related problems. Many people are left with physical, psychological, social and existential needs that affect general health and well-being. These concepts are not new in cancer survivorship literature, yet remain relatively unexplored in relation to people who have completed treatment for lymphoma/leukaemia.
Objective A survivorship team sought to understand the psychosocial, practical and educational and practical needs from the perspectives of survivors of lymphoma/leukaemia.
Methods 19 patients >25 years of age who had completed treatment for leukaemia/lymphoma 6-48 months previously participated in one of two focus groups. A psychologist experienced in focus group moderation with cancer patients led each 90 minute audio recorded focus group using a semi structured interview guide. Transcripts were coded using thematic analysis with NVivo software.
Results Ten females and nine males participated. Four themes emerged; participants (1) wanted to build a relationship with someone (e.g. nurse coordinator) to whom they could ask questions and contact for advice/support; (2) were still treatment-focused, feeling “stuck” and unable to move on; (3) felt a sense of loss as their “normal” had forever changed and they were experiencing difficulty adjusting and/or finding a “new normal”; and (4) felt a lack of practical and emotional support and wanted to build a connection with someone that cared about them and could help them put their life back together.
Conclusion Adult of leukaemia/lymphoma survivors have unmet needs for emotional support and survivorship care coordination. Results suggest the addition of a specialist survivorship coordinator for follow-up care may improve survivors’ transition to post treatment life, particularly for emotional and practical support.