Affiliation:
1. Clinical Psychology, University of Nottingham, Nottingham, UK
2. Clinical Psychology, University of Lincoln, Lincoln, UK
3. Nottinghamshire Healthcare Foundation Trust, Nottinghamshire, UK
Abstract
Objective. Research reporting the unmet needs of individuals with haematological cancers under watch-and-wait is scarce, despite reports of elevated levels of psychological distress. This qualitative study aimed to explore the psychosocial needs of these individuals, and when these were met, if so at all. Methods. A longitudinal design using semistructured interviews was used. Individuals with a diagnosis of haematological cancer living under watch-and-wait were recruited through online support groups. Participants were each invited to two semistructured interviews, six months apart. Interviews took place in March 2022 and September 2022 and were therefore in the context of the COVID-19 pandemic. All interviews were recorded and transcribed verbatim. Reflexive thematic analysis and pattern-oriented longitudinal analysis were used to analyse the data. Results. Of the fifteen participants interviewed initially, twelve attended a second interview. The sample was predominantly White and female. Across participants and time points, a theme was generated that individuals experienced a “Psychological battle of watch-and-wait.” Under this overarching theme, four themes were constructed: “Understanding the impossible: Cancer that does not require treatment;” “Sense of abandonment under watch and wait;” “The importance of peer connection;” and “Trying to live after COVID-19.” The themes were understood to predominantly represent needs for information, communication, peer support, and emotional support and were most often met when individuals engaged with relevant charities. Conclusion. People living with haematological cancer under watch-and-wait may be at risk of having unmet needs across domains, and without support, these needs will likely remain unmet over time. The findings add to the growing literature base how Oncology and Haematology services can holistically support individuals with indolent cancers to live well alongside their diagnosis.
Funder
NHS Health Education England
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