Abstract
Purpose
A cancer diagnosis is an emotive and challenging time for patients. This study aimed to systematically explore patients’ accounts of experiencing their cancer diagnosis. The purpose of this article is to offer a typology of patient responses to receiving a cancer diagnosis as a means through which to affirm the range of patients’ experiences and to guide clinicians’ practice.
Methods
Qualitative semi-structured interviews were conducted between 2015 and 2017 with 80 patients living with cancer: 34 females and 46 males, aged between 31 and 85, diagnosed with a range of cancer types, stages and treatment trajectories, from two metropolitan hospitals on the east coast of Australia. Interview data were analysed thematically, using the framework approach.
Results
A typology of responses to the cancer diagnosis was derived from the analysis and included (1) the incongruent diagnosis, unexpected because it did not ‘fit’ with the patient’s ‘healthy’ identity; (2) the incidental diagnosis, arising from seemingly unrelated or minor medical investigations; (3) the validating diagnosis, as explanation and confirmation of previously unexplained symptoms, pain or feelings; (4) the life context diagnosis, where the cancer diagnosis was positioned relative to other challenging life events, or as relatively inconsequential compared with the hardship of others.
Conclusions
A diagnosis of cancer is not always (or only) experienced by patients with shock and despair. Diagnosis is perceived and experienced in diverse ways, shaped by broader social or life contexts, and with important implications for the clinical encounter and communication from an oncology perspective.
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Notes
Unrelated from the patient’s perspective. We reiterate here the emphasis on patient-centred experience in response to diagnosis and note that medical investigations and/or screening may have been related to early signs/symptoms of cancer but understood as unrelated by the patient.
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Funding
This study was supported by funding from the Australian Research Council Discovery Project (DP150100414) and Australian Research Council Fellowships (DE150100285 and DE170100440).
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was received from the Royal Brisbane and Women's Hospital Human Research Ethics Committe (Approval number: HREC/15/QRBW/65).
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Appendix 1: Interview topic guide/indicative questions
Appendix 1: Interview topic guide/indicative questions
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(A)
The experience of living with cancer: introduction and context
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1. Could you tell me about your experience so far of living with cancer?
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2. What forms of support have you received from family, friends colleagues etc?
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3. Could you tell me about what living with cancer means to you?
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4. Could you tell me about your experience of your specific type of cancer? How (if at all) do you think having this particular form of cancer impacts on you and your access to care?
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5. Could you tell me about the types of information and social support you have been offered and/or accessed outside formal care contexts, and the role of these in your experiences of illness and care?
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(B)
Relationships and living with cancer
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6. Could you tell me about the informal care and support you have received, and how it has helped/hindered or otherwise shaped your experience of living with cancer?
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7. Could you tell me about the different ways you have been supported by people around you and the impact/influence of these relationships on experience of illness and care?
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8. How do you feel about the support you have received/been offered by family members, friends, colleagues, others?
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(C)
The role(s) of health professionals
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9. Could you tell me about the different forms of professional care you have received, and the positive and negative things about this care?
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10. How have your health professionals approached issues around your care and treatment, and how have you experienced these communications and interactions?
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11. How have your health professionals approached the issues of ongoing survival with cancer, and how have they assisting the process of living with cancer?
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12. What are the respective roles of allied health, medicine and nursing in terms of supporting, discussing and shaping survivorship in the context of your cancer?
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Demographics:
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Age
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Sex
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Diagnosis
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Stage
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Relationship status
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Children
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Place of residence
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Kirby, E.R., Kenny, K.E., Broom, A.F. et al. Responses to a cancer diagnosis: a qualitative patient-centred interview study. Support Care Cancer 28, 229–238 (2020). https://doi.org/10.1007/s00520-019-04796-z
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DOI: https://doi.org/10.1007/s00520-019-04796-z