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Exploring issues of identity for adult haematology oncology patients Stephens, Jennifer Marie Lior

Abstract

Caring for adult haematology cancer patients can be challenging, and the difference in experience between this cancer subgroup and solid tumour cancers is only recently becoming a topic of investigation as researchers seek to identify and understand fundamental biological and psychological dissimilarities. The issue of identity is one that is of intense consequence for many cancer patients as they move from one state of being to another. This qualitative study was undertaken to generate knowledge about this important concern in a way that would ultimately inform an understanding of how to improve the patient experience of care with regards to identity concerns. Interpretive description served as the methodological framework which guided a data collection and analysis strategy composed of five consecutive layers. Secondary research included a critical integrative literature review, a historical inquiry, and a secondary analysis of a pre-existing qualitative database. Primary research was composed of semi-structured interviews undertaken with a haematology oncology patient cohort as well as semi-structured interviews with experienced oncology clinicians. Findings revealed that adult haematology oncology patients co-create and enact new identities that are increasingly aligned with a distinct experience defined specifically by their cancer subtype. Pre-existing identity labels and associated behaviours and expectations generally were viewed by patients as inadequate to fully describe and inform their experience of having a haematological cancer. Knowledge-gathering, linking with others who had similarly unique diagnoses down to a genetic level, and exploring the abstract cellular nature of their disease were just some of the themes that addressed ways these patients engaged with the highly complex and embodied construct known as identity. Several implications for clinical practice resulted from this study and include the importance of recognizing identity as simultaneously a physiological and psycho-social concern that will mean different things to different people at different times in the course of their disease. Implications for further research include advocating for theoretical and substantive knowledge development around identity constructs to generate further understanding of the deeply-rooted, textured relationship between identity and overall well-being.

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Attribution-NonCommercial-NoDerivatives 4.0 International