Journal
PALLIATIVE MEDICINE
Volume 31, Issue 2, Pages 171-180Publisher
SAGE PUBLICATIONS LTD
DOI: 10.1177/0269216316647610
Keywords
Uncertainty; palliative care; terminal care; qualitative research; comorbidity; communication
Categories
Funding
- Academic Clinical Fellow by the National Institute for Health Research
- National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme [RP-PG-1210-12015 - C-CHANGE]
- NIHR Programme Grants
- National Institutes of Health Research (NIHR) [RP-PG-1210-12015] Funding Source: National Institutes of Health Research (NIHR)
- National Institute for Health Research [ACF-2012-17-020, RP-PG-1210-12015] Funding Source: researchfish
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Background: Uncertainty is common in advanced illness but is infrequently studied in this context. If poorly addressed, uncertainty can lead to adverse patient outcomes. Aim: We aimed to understand patient experiences of uncertainty in advanced illness and develop a typology of patients' responses and preferences to inform practice. Design: Secondary analysis of qualitative interview transcripts. Studies were assessed for inclusion and interviews were sampled using maximum-variation sampling. Analysis used a thematic approach with 10% of coding cross-checked to enhance reliability. Setting/participants: Qualitative interviews from six studies including patients with heart failure, chronic obstructive pulmonary disease, renal disease, cancer and liver failure. Results: A total of 30 transcripts were analysed. Median age was 75 (range, 43-95), 12 patients were women. The impact of uncertainty was frequently discussed: the main related themes were engagement with illness, information needs, patient priorities and the period of time that patients mainly focused their attention on (temporal focus). A typology of patient responses to uncertainty was developed from these themes. Conclusion: Uncertainty influences patient experience in advanced illness through affecting patients' information needs, preferences and future priorities for care. Our typology aids understanding of how patients with advanced illness respond to uncertainty. Assessment of these three factors may be a useful starting point to guide clinical assessment and shared decision making.
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