We are eager to understand and address the uncertainties inherent in serious and life-threatening illnesses. Such uncertainties can be emotionally overwhelming and may inhibit decision making and future care planning. Uncertainty can be seen as something to be eliminated in healthcare, but is often irresolvable in reality, meaning that health professionals who tolerate uncertainty poorly are at risk of distress and burnout. By improving how uncertainty is recognised and communicated, we may be able to improve care experience and outcomes in many life-threatening illnesses.
This research area includes related work exploring how communication and care planning can be improved in a range of palliative care contexts.
Projects in this area include:
-
Communicating uncertainty in multimorbidity: a co-design study. This project, funded by Addenbrookes Charitable Trust, seeks to improve how the uncertainties inherent to the disease course of multimorbidity can best be communicated.
-
Improving communication of prognostic uncertainty in palliative and end of life care contexts: a realist literature review.
-
Triadic communication in teenagers and young adults with cancer.
-
Improving the impact of advance care planning on the quality of life and care of frail older people. Joint British Geriatrics Society and Dunhill Medical Trust Doctoral Training Fellowship.
Selected relevant papers:
Etkind SN, Li J, Louca J, Hopkins S, Kuhn I, Spathis A, Barclay S. Total Uncertainty: A systematic review and thematic synthesis of experiences of uncertainty in advanced multimorbidity. 2022. Age and Ageing (51)8 afac188, https://doi.org/10.1093/ageing/afac188
Etkind SN, Barclay S, Spathis S, Hopkins SA, Bowers B, Koffman J. Uncertainty in serious illness: a national interdisciplinary consensus exercise to identify clinical research priorities. 2024. PLoS ONE 19(2): e0289522. https://doi.org/10.1371/journal.pone.0289522
Hopkins SA, Bentley A, Phillips V, Barclay S. Advance care plans and hospitalized frail older adults: a systematic review. BMJ Support Palliat Care. 2020 Jun;10(2):164-174. doi: 10.1136/bmjspcare-2019-002093.
Collins P, Hopkins S, Milbourn H, Etkind S. Uncertainty and advance care planning in older adults living with frailty. 2024. Age and Ageing afae146 https://academic.oup.com/ageing/article/53/9/afae146/7748176
Critoph DJ, Taylor RM, Spathis A, et al Triadic communication with teenagers and young adults with cancer: a systematic literature review – ‘make me feel like I’m not the third person’ BMJ Open 2024;14:e080024 https://bmjopen.bmj.com/content/14/2/e080024.citation-tools