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Abstract
Objective: Oesophageal cancer is an increasingly prevalent disease with a demanding post-curative treatment recovery period and sustained longer-term effects. Although post-curative treatment is a key transitionary period, the process of psychological adjustment for the individual is under-researched which limits the evidence base to inform supportive care. The aim of this study was to understand the process of adjustment for oesophageal cancer patients post-curative treatment, in particular the beliefs participants hold regarding their condition and how these are appraised against their experience.
Design: Serial interviews were undertaken with six oesophageal cancer patients who have recently completed curative treatment, at baseline and at 6-month follow-up using interpretative phenomenological analysis.
Results: The findings demonstrate an effortful process of adjustment, including recognising and accepting a changed self, fostering control beliefs over the course of the illness and physical sequelae, searching for meaning, developing illness coherence and moving away from self-blame.
Conclusions: This study is the first to utilise a longitudinal qualitative design in oesophageal cancer, and provides an understanding of post-treatment adjustment over time for this clinical population through which to inform clinical practice and service development.
Acknowledgements
We would like to thank the Oesophageal Patients Association Northern Ireland for their support of this research and the participants who were so generous with their time.
Disclosure statement
No potential conflict of interest was reported by the authors.
Appendix A: Interview guidelines
Generally we want to gather data from the participants’ perspectives (experiential), rather than assuming some sort of objective reality. We should also explicitly try to recognise and put aside any assumptions that we may possess (‘bracketing’).
To begin the interview, start with a very general question –
❖ ‘Please, tell me about your present experience of living with upper GI cancer’
We want participants to talk about their cognitive representations of upper GI cancer (what they think about upper GI cancer). It is likely however, that they may begin by discussing more affective/emotional aspects. Therefore, it may be necessary to ask the individual to explain what it is about upper GI cancer that makes them feel in a particular way, for example:
‘What is it about your illness that makes you feel so low/isolated/anxious etc?’
‘Why do you feel that way?’
In order to encourage discussion on all aspects of the participant’s illness beliefs, it may be necessary to use the following prompts-
‘Do you think much about the cause of your cancer?’
‘Do you think about your prognosis?’
‘Do you think about the long-term course/effects of your illness?’
‘Do you think you have much control over your illness/health?’
‘Do you feel you understand your illness well?’
In relation to the effects of the participant’s illness in particular, it may be necessary to ask;
‘What do you think about the physical impact of your illness at present?’
‘What do you think about the social impact of your illness at present, for example on your family life?’
Moving on to how the participant copes with their condition, ask a general question such as;
❖ ‘How do you cope with or manage your condition on a daily basis?’
Encourage discussion of how the individual copes with a range of situations, both individually and with others in their support circle.
Next, ask about the individual’s information seeking behaviour.
❖ ‘Would you often seek out information on your illness?’
Further prompts may be needed to encourage discussion on;
What areas do you feel you need most information on?
What/who are the most credible sources of information?
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1. Bring interview to close – bring interview to a close. Give the participant opportunity to disclose any further information they feel is important
❖ ‘Would you like to share any other thoughts or feelings about your cancer?’
Additional information
Notes on contributors
Lisa Graham-Wisener
Conception or design of the experiment(s), or collection and analysis or interpretation of data: all authors. Drafting the manuscript or revising its intellectual content: all authors. Approval of the final version of the submitted manuscript: all authors.
Julie Hanna
Conception or design of the experiment(s), or collection and analysis or interpretation of data: all authors. Drafting the manuscript or revising its intellectual content: all authors. Approval of the final version of the submitted manuscript: all authors.
Louise Collins
Conception or design of the experiment(s), or collection and analysis or interpretation of data: all authors. Drafting the manuscript or revising its intellectual content: all authors. Approval of the final version of the submitted manuscript: all authors.
Martin Dempster
Conception or design of the experiment(s), or collection and analysis or interpretation of data: all authors. Drafting the manuscript or revising its intellectual content: all authors. Approval of the final version of the submitted manuscript: all authors.