Anna Pålsson1, Marlene Malmström2, Cecilia Follin3. 1. Department of Endocrinology, Skåne University Hospital, Institution of Clinical Sciences, Lund, Sweden. 2. Department of Surgery, Skåne University Hospital, Institution of Clinical Sciences, Lund, Sweden. 3. Department of Endocrinology, Skåne University Hospital, Institution of Clinical Sciences, Lund, Sweden. Electronic address: cecilia.follin@med.lu.se.
Abstract
The survival rate after childhood cancer has improved markedly and today more than 80% of patients will survive. Many childhood cancer survivors suffer from late complications due to radiotherapy and chemotherapy. Survivors of Acute Lymphoblastic Leukaemia (ALL), treated with cranial radiotherapy, are at a particularly high risk of having endocrine complications. PURPOSE: To illuminate childhood ALL survivors' experiences of a long-term follow-up in an endocrine clinic. METHOD: Data collection carried out using semi-structured focus-group interviews. Fifteen ALL survivors were included in the study, divided into 4 groups. Data was analysed with conventional qualitative content analysis. RESULTS: The survivors' experiences were captured in the theme: "The need for understanding and support in order to manage daily life". An understanding of their situation, as well as support for managing daily life was fundamental. Lack of understanding and support from the community was connected with a fear for the future. The follow-up at the endocrine clinic was shown to be crucial for increasing the survivors' understanding of late complications. The past feeling of being out of control was replaced with an increased self-confidence. CONCLUSION: Many leukaemia survivors experienced their daily lives as a struggle and as a complicated issue to cope with. The theme "understanding and support to manage daily life" mirrors how the survivors are in need of knowledge and support in order to handle and understand their complex situation after surviving leukaemia. Offering understanding and support with a holistic approach, may be a way in which to strengthen the survivors' health.
The survival rate after childhood cancer has improved markedly and today more than 80% of patients will survive. Many childhood cancer survivors suffer from late complications due to radiotherapy and chemotherapy. Survivors of Acute Lymphoblastic Leukaemia (ALL), treated with cranial radiotherapy, are at a particularly high risk of having endocrine complications. PURPOSE: To illuminate childhood ALL survivors' experiences of a long-term follow-up in an endocrine clinic. METHOD: Data collection carried out using semi-structured focus-group interviews. Fifteen ALL survivors were included in the study, divided into 4 groups. Data was analysed with conventional qualitative content analysis. RESULTS: The survivors' experiences were captured in the theme: "The need for understanding and support in order to manage daily life". An understanding of their situation, as well as support for managing daily life was fundamental. Lack of understanding and support from the community was connected with a fear for the future. The follow-up at the endocrine clinic was shown to be crucial for increasing the survivors' understanding of late complications. The past feeling of being out of control was replaced with an increased self-confidence. CONCLUSION: Many leukaemia survivors experienced their daily lives as a struggle and as a complicated issue to cope with. The theme "understanding and support to manage daily life" mirrors how the survivors are in need of knowledge and support in order to handle and understand their complex situation after surviving leukaemia. Offering understanding and support with a holistic approach, may be a way in which to strengthen the survivors' health.