Abstract
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 (COPD), renal disease, cancer and liver failure
Results: 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.
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 (COPD), renal disease, cancer and liver failure
Results: 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.
Original language | English |
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Pages (from-to) | 171-180 |
Number of pages | 10 |
Journal | Journal of Palliative Medicine |
Volume | 31 |
Issue number | 2 |
Early online date | 29 Apr 2016 |
DOIs | |
Publication status | Published - Feb 2017 |
Research Groups and Themes
- Palliative and End of Life Care
Keywords
- Uncertainty
- Palliative care
- Terminal care
- Qualitative Research
- Comorbidity
- Communication