Begley, A;
Pritchard-Jones, K;
Biriotti, M;
Kydd, A;
Burdsey, T;
Townsley, E;
(2014)
Listening to patients with cancer: using a literary based research method to understand patient-focussed care.
BMJ Open
, 4
(10)
10.1136/bmjopen-2014-005550.
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Abstract
Objective In spite of considerable attention, patients diagnosed with cancer continue to report poor experiences of care. The root causes of this remain unclear. This exploratory study aimed to investigate new ways of understanding the experience of patients with cancer, using a literary-based research approach. Design Interviews were undertaken with four patients diagnosed with high grade brain cancers at least six months from diagnosis and with people (n = 5) identified by the patients as important in their care pathway. Interview transcripts were analysed by humanities academics as pieces of literature, where each patient’s story was told from more than one person’s perspective. The academics then came together in a facilitated workshop to agree major themes within the patient experiences. The themes were presented at a patient and carer event involving 70 participants to test the validity of the insights. Results Insights into the key issues for patients with cancer could be grouped into six themes: accountability; identity; life context; time; language; rigour and emotion. Patients often held a different perspective to the traditionally held medical views of what constitutes good care. For example, patients did not see any conflict between a doctor having scientific rigour and portraying emotion. Conclusions One key feature of the approach was its comparative nature: Patients often held different views from those traditionally held by physicians of what constitutes health and good outcomes. This revealed aspects that may be considered by health care professionals when designing improvements. Proposals for further testing are discussed, with a particular emphasis on the need for sensitivity to individual differences in experiences.
| Type: | Article |
|---|---|
| Title: | Listening to patients with cancer: using a literary based research method to understand patient-focussed care |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1136/bmjopen-2014-005550 |
| Publisher version: | http://dx.doi.org/10.1136/bmjopen-2014-005550 |
| Language: | English |
| Additional information: | This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. |
| Keywords: | Head and neck tumours, quality in healthcare, qualitative research |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Developmental Biology and Cancer Dept |
| URI: | https://discovery.ucl.ac.uk/id/eprint/1448229 |
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