O-15 The uncertainty gap: a systematic review &amp; thematic synthesis exploring multi-perspective experiences of uncertainty in advanced multimorbidity

Etkind, Simon Noah; Li, Jiaqi; Louca, John; Barclay, Stephen; Spathis, Anna

doi:10.1136/spcare-2022-scpsc.15

Cited by 9 publications

(16 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This will incorporate their ideas, concerns, and expectations, and a discussion about what might be important if a possible sudden event or change were to happen. This conversation is guided by the patient’s main illness trajectory while always acknowledging the inherent uncertainty of advanced illness 3031. A way of approaching this is to say, “It is hard to know exactly what will happen with your illness or how quickly things might change, but would it help to talk about what can sometimes happen for people with health conditions like yours?”…”

Section: How Can We Use Illness Trajectories To Improve Patient Care?mentioning

confidence: 99%

Using illness trajectories to inform person centred, advance care planning

Murray,

Boyd,

Moine

et al. 2024

BMJ

View full text Add to dashboard Cite

Section: How Can We Use Illness Trajectories To Improve Patient Care?mentioning

confidence: 99%

Using illness trajectories to inform person centred, advance care planning

Murray,

Boyd,

Moine

et al. 2024

BMJ

View full text Add to dashboard Cite

“…Models of uncertainty and evidence gaps from relevant literature reviews were outlined. [11,32,34,43,44] We then held focus groups with participants to explore their views on uncertainty and identify key areas for future research. This approach mirrored the idea generation stage of the nominal group technique and the first round of a Delphi process.…”

Section: Workhop Processmentioning

confidence: 99%

“…multimorbidity. [11] However, there are still evidence gaps concerning how uncertainty affects individuals in other clinical contexts, in particular older patients living with frailty. Given the rapidly increasing complexity of the healthcare system and unpredictability of the frailty trajectory, this is an area that warrants urgent exploration.…”

Section: Summary Of Findingsmentioning

confidence: 99%

“…We recruited a UK-wide sample, but this was not an international study, and future work should explore if these findings hold internationally, though literature from 17 countries reported consistent findings on a similar topic. [11] The anonymous nature of the ranking means we could not adjust for the background of participants when analysing ranking data. The largest group of clinical participants were from palliative care backgrounds which may have shaped their views; however, a broad range of health professionals and researchers were represented, and the degree of agreement, particularly regarding the top priority of communication suggests the findings represent true consensus.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

“…Uncertainty may precipitate extensive psychological and existential distress, potentially culminating in an experience of 'Total Uncertainty' which may threaten an individual's sense-of-self. [11] If uncertainty is not addressed it may impact patient safety, adverse events, healthcare interactions and relationships. [12,13] One metric where this is recorded are complaints levelled at healthcare, particularly in hospital settings.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Uncertainty in serious illness: A national interdisciplinary consensus exercise to identify clinical research priorities

Etkind¹,

Barclay²,

Spathis³

et al. 2023

Preprint

Self Cite

View full text Add to dashboard Cite

Background: Serious illness is characterised by uncertainty, particularly in older age groups. Uncertainty may be experienced by patients, family carers, and health professionals about a broad variety of issues. There are many evidence gaps regarding the experience and management of uncertainty. Aim: We aimed to identify priority research areas concerning uncertainty in serious illness, to ensure that future research better meets the needs of those affected by uncertainty and reduce research inefficiencies. Methods: Rapid prioritisation workshop comprising five focus groups to identify research areas, followed by a ranking exercise to prioritise them. Participants were healthcare professionals caring for those with serious illnesses including geriatrics, palliative care, intensive care; researchers; patient/carer representatives, and policymakers. Descriptive analysis of ranking data and qualitative framework analysis of focus group transcripts was undertaken. Results: Thirty-four participants took part; 67% female, mean age 47 (range 33 – 67). The highest priority was communication of uncertainty, ranked first by 15 participants (overall ranking score 1.59/3). Subsequent priorities were: 2) How to cope with uncertainty; 3) healthcare professional education/training; 4) Optimising clinical approaches to uncertainty; and 5) exploring in-depth experiences of uncertainty. Research related to optimally managing uncertainty was given higher priority than research focusing on experiences of uncertainty and its impact. Conclusions: These co-produced, clinically-focused research priorities map out key evidence gaps concerning uncertainty in serious illness. Managing uncertainty is the most pressing issue, and researchers should prioritise how to optimally manage uncertainty in order to reduce distress, unlock decision paralysis and improve illness and care experience.

show abstract

Using the Kipling method to explore the contextual factors of decision-making during advance care planning for older cancer patients, their family, and health-care professionals: A qualitative secondary analysis

Lin,

Chiang,

Sheu

2023

Pall Supp Care

View full text Add to dashboard Cite

Objectives Advance care planning (ACP) interventions are supposed to affect patients’ autonomy and family health-care outcomes positively. However, the clinical benefits of ACP actualization and associated contextual factors merit questioning. Therefore, this study explores the critical contextual and procedural factors related to ACP decision-making based on the actual situation of older patients with cancer encountering end-of-life care in Taiwan. Methods This retrospective qualitative secondary analysis used the Kipling method (5W1H) to explore further the critical contextual and procedural factors related to ACP decision-making processes. We applied thematic analysis and dual coding for 35 narratives, including 10 patients with cancer, 10 family caregivers, and 15 health-care staff, derived from a preliminary qualitative study regarding palliative care decision-making among patients with advanced cancer, their families, and health-care staff. Results We identified 6 domains detailing the contextual factors for ACP decision-making: (1) WHO (decision makers); (2) WHAT (discussion content); (3) WHEN (care plan for which disease stage); (4) WHERE (patient’s situational location); (5) WHY (reasons underpinning the decisions); and (6) HOW (the way to form the decisions). Significance of results Using the Kipling method to elaborate the contextual factors for ACP decision-making among older patients with cancer strengthens the understanding of complicated end-of-life care decision-making procedure. This study also demonstrates the dynamic and cultural complexity and the various factors considered during end-of-life care and future ACP discussion.

show abstract

O-15 The uncertainty gap: a systematic review & thematic synthesis exploring multi-perspective experiences of uncertainty in advanced multimorbidity

Cited by 9 publications

References 0 publications

Using illness trajectories to inform person centred, advance care planning

Using illness trajectories to inform person centred, advance care planning

Uncertainty in serious illness: A national interdisciplinary consensus exercise to identify clinical research priorities

Using the Kipling method to explore the contextual factors of decision-making during advance care planning for older cancer patients, their family, and health-care professionals: A qualitative secondary analysis

Contact Info

Product

Resources

About