Russell, Katie
(2023)
Exploring the psychosocial needs of adults with haematological cancer under watch-and-wait.
DClinPsy thesis, University of Nottingham.
Abstract
Background: Understanding patients’ unmet needs has been deemed critical for holistic cancer care provision. However, research reporting the unmet needs of individuals with haematological cancers under watch-and-wait (indolent haematological cancers [IHC]) is scarce, despite reports of high levels of psychological distress in this population. Therefore, the present study aimed to explore the psychosocial needs of individuals living with IHC and when these needs were met, if so at all. To further understanding, the study also aimed to explore if, and if so how, needs changed over a six-month period, and whether needs differed from those identified in individuals with prostate cancer under watch-and-wait.
Method: A longitudinal qualitative design using semi-structured interviews was used. Fifteen participants were each invited to two semi-structured interviews, six months apart. Interviews took place in March 2022 and September 2022 and were therefore in the context of the Covid-19 pandemic. The interview schedule was designed to explore the needs of individuals, and when these needs were met and unmet. Themes were constructed using inductive reflexive thematic analysis and pattern-oriented longitudinal analysis. Secondary codebook analysis was applied to explore how well needs mapped onto the needs reported by individuals with prostate cancer under watch-and-wait. The analysis was also used to examine the applicability of an existing psychosocial needs theory (Self-Determination Theory) and a model of psychosocial adjustment to chronic illness and disease.
Analysis: Of the 15 participants interviewed initially, 12 attended a second interview six months later. The sample was predominantly White and female. One overarching theme: ‘The psychological battle of watch-and-wait’, was constructed. Under this, four themes were generated: (1) Understanding the impossible: cancer that does not require treatment; (2) Sense of abandonment under watch and wait; (3) The importance of peer connection; (4) Trying to live after Covid-19. These themes were found to represent information, communication, peer, emotional, and public awareness needs. Needs appeared to remain relatively stable over time and were most often met when individuals engaged with relevant charities. Deductive analysis generated the understanding that individuals with IHC have some similar and some unique needs, compared to individuals with prostate cancer under watch-and-wait. Finally, the data was found to map onto Self-Determination Theory and the model of psychosocial adaption to chronic illness and disease.
Discussion: People living with IHC not receiving treatment may be at risk of having unmet needs across domains. Future research should aim to develop effective psychosocial interventions that target the unmet emotional and informational needs of people living with IHC. Limitations of the present study include recruitment occurring exclusively through peer support groups and the predominantly White female sample, which may have skewed the needs reported.
Impact on Clinical Psychology: This study was the first to explore the psychosocial needs of individuals with IHCs qualitatively, providing an in-depth analysis of the needs for information, communication, emotional support, and peer connection. These findings add to the growing literature base of how Oncology and Haematology services can holistically support individuals with IHC to live well alongside their diagnosis.
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