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Ngwenya, Nothando, Crang, Clare, Farquhar, Morag 
ORCID: https://orcid.org/0000-0001-7991-7679, Rintoul, Robert C., Mahadeva, Ravi, Calvert, Lori D., Murray, Scott A. and Barclay, Stephen
(2021)
Communicating uncertainty: contrasting the communication experiences of patients with advanced COPD and incurable lung cancer.
Family Practice, 38 (5).
637–643.
ISSN 0263-2136
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Abstract
Background: Due to the uncertain disease trajectory and variable rate of progression in chronic obstructive pulmonary disease (COPD), health care professionals (HCPs) are challenged in explaining what the future may hold for patients compared to those with lung cancer (LC). Support and communication of timely information can significantly improve health outcomes. Objective: This study sought to identify factors that impact communication and support and recommend ways to improve patients’ understanding of living with life-threatening illness. Methods: Semi-structured interviews with patients with LC (n = 22) and advanced COPD (n = 18), their informal carers (21 LC and 18 COPD) and HCPs (n = 51). Patients were recruited from primary and secondary care in the East of England, UK, during 2010–12. Results: Directness and clarity characterized communication in LC, whereas uncertainty and limited explanations predominated in COPD. Discussions on how the disease might impact on decisions and preferences to be made in the future were less common in COPD. Information for LC patients was mainly from hospital clinicians and any information for COPD patients mainly from primary care clinicians. Conclusions: The experience of COPD patients could be improved by professionals soon after diagnosis explaining to them the typical pattern of decline in COPD, highlighting the inherent uncertainties about when exacerbations and death may occur. This conversation should lead to planning for the different challenges that the patient and informal carer recognize as most important to them. This contrasts with the ‘breaking bad news’ conversation that oncologists are highly trained to deliver.
| Item Type: | Article |
|---|---|
| Additional Information: | Data availability: The data underlying this article cannot be shared publicly for the privacy of individuals that participated in the study. The data will be shared on reasonable request to the corresponding author. Funding: this study was funded by Macmillan Cancer Support RG57555. During the research, NN and SB were part funded and supported by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care East of England at Cambridgeshire and Peterborough NHS Foundation Trust. At the time of the time of the study, MF was funded by a Macmillan Post-Doctoral Research Fellowship and then a National Institute for Health Research Career Development Fellowship. RCR is funded, in part, by the Cancer Research UK Cambridge Cancer Centre and the Cambridge Biomedical Research Centre. |
| Uncontrolled Keywords: | advance care planning,chronic obstructive pulmonary disease (copd),health communication,lung cancer,primary health care,uncertainty,family practice,sdg 3 - good health and well-being ,/dk/atira/pure/subjectarea/asjc/2700/2714 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Groups > Health Promotion Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 12 Mar 2021 00:41 |
| Last Modified: | 19 Oct 2023 02:55 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/79439 |
| DOI: | 10.1093/fampra/cmab024 |
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