The PROACT (Patient Reported Outcomes in cancer, impact of Age and Carer role demands associated with Treatment) study had the primary aim of developing 2 scales measuring the impact of cancer on wellbeing and caregiving responsibilities, for people with cancer and the individuals supporting them. The project consisted of 4 consecutive studies; the first stage was the collection of qualitative narratives to understand the patient/caregiver experience. This article reports on an incidental finding from these narratives.
The researchers conducted semistructured interviews exploring participants’ views on the impact cancer had on their quality of life. They interviewed 24 people with stage III/IV cancer from 3 tumor groups, lung (n = 6), melanoma (n = 9), and ovarian (n = 9), and 23 informal caregivers. Interviews were recorded and transcribed verbatim and a framework was developed through open coding. A framework approach to thematic analysis was employed.
Twenty themes and 33 subthemes were identified including topics such as impact for caregiving and employment. There was an unplanned finding of participants recurrently using concepts of “luck” or good fortune when describing their situations. Although not a theme itself, this narrative was present across the framework, occurring when individuals made comparisons to “other” groups of people perceived as facing more difficulties.
This analysis provides insight into the use of language by both patients and informal caregivers in the advanced disease setting, laying the foundation for future research exploring any effects this has on dyadic wellbeing. These interpretations form a basis to explore whether this language can be harnessed by healthcare professionals to deliver information in line with an individual's conceptualization of their situation.
aSussex Health Outcomes Research and Education in Cancer (SHORE-C), Brighton and Sussex Medical School, University of Sussex, Brighton, UK
bSussex Health Outcomes Research and Education in Cancer (SHORE-C), Brighton and Sussex Medical School, University of Sussex, Brighton, UK, BN1 9RX
Corresponding author. Address: Sussex Health Outcomes Research and Education in Cancer (SHORE-C), Brighton and Sussex Medical School, University of Sussex, Brighton, UK, BN1 9RX. Tel.: +01273 873 023; fax: +01273 873 022. E-mail: address: R.M.L.Starkings@sussex.ac.uk (R. Starkings).
Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.
This work was supported by Bristol-Myers Squibb (BMS).
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.
VS has received an honorarium from the funder for serving on an advisory board. The two remaining authors have no conflicting interests.
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Received February 18, 2019
Accepted June 27, 2019
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