Endings and the end of treatment bell in paediatric cancer treatment for acute lymphoblastic leukaemia: An interpretative phenomenological analysis of children's perspectives

Martha von Werthern; Rebecca Sweet; Anastasia Tsipa; Izel Caliskan; Henry Clements; Kat Alcock; Kristina Soon

doi:10.1016/j.jcpo.2023.100442

Endings and the end of treatment bell in paediatric cancer treatment for acute lymphoblastic leukaemia: An interpretative phenomenological analysis of children's perspectives

J Cancer Policy. 2023 Dec:38:100442. doi: 10.1016/j.jcpo.2023.100442. Epub 2023 Aug 28.

Authors

Martha von Werthern¹, Rebecca Sweet², Anastasia Tsipa¹, Izel Caliskan¹, Henry Clements¹, Kat Alcock¹, Kristina Soon³

Affiliations

¹ University College London, Research Department of Clinical, Educational and Health Psychology, 1-19 Torrington Place, London WC1E 6BT, UK.
² Great Ormond Street Hospital, Great Ormond Street, London WC1N 3JH, UK.
³ University College London, Research Department of Clinical, Educational and Health Psychology, 1-19 Torrington Place, London WC1E 6BT, UK; Great Ormond Street Hospital, Great Ormond Street, London WC1N 3JH, UK. Electronic address: k.soon@ucl.ac.uk.

PMID: 37648153
DOI: 10.1016/j.jcpo.2023.100442

Abstract

Advancements in paediatric oncology have made quality of life after cancer increasingly clinically important. Little is currently known about children's experiences of treatment completion and its management.

Aim: The current study explores children's experience of ending treatment for Acute Lymphoblastic Leukaemia (ALL), and the meaning it is given, particularly how endings are signified and marked.

Method: Semi-structured interviews were conducted with seven children who had completed cancer treatment for ALL with good prognoses. Interviews were analysed using Interpretative Phenomenological Analysis.

Results: Five superordinate themes were generated: 'the end is always there', 'the punctuation of endings', 'that which is remembered, that which is forgotten', 'the voiced and the unvoiced', and 'freedom from cancer.'

Conclusion: Children highlighted the importance of punctuating and celebrating the end of their treatment, and the need for doing this in ways that helped them process the complexity of ending active treatment and provides space for their voices.

Keywords: Acute lymphoblastic leukaemia; Cancer; Children and young people; End of treatment; Interpretative phenomenological analysis; Oncology; Qualitative research.

MeSH terms

Child
Humans
Precursor Cell Lymphoblastic Leukemia-Lymphoma* / drug therapy
Quality of Life*