How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data

Simon Etkind, Katherine Bristowe, Katherine Bailey, Lucy E Selman, Fliss Murtagh

Research output: Contribution to journalArticle (Academic Journal)peer-review

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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.
Original languageEnglish
Pages (from-to)171-180
Number of pages10
JournalJournal of Palliative Medicine
Volume31
Issue number2
Early online date29 Apr 2016
DOIs
Publication statusPublished - Feb 2017

Keywords

  • Uncertainty
  • Palliative care
  • Terminal care
  • Qualitative Research
  • Comorbidity
  • Communication

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