Dataset Information

Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research.

ABSTRACT:

Introduction

Engaging patients and family members as partners in research increases the relevance of study results and enhances patient-centered care; how to best engage patients and families in research is unknown.

Methods

We tested a novel research approach that engages and trains patients and family members as researchers to see if we could understand and describe the experiences of patients admitted to the intensive care unit (ICU) and their families. Former patients and family members conducted focus groups and interviews with patients (n = 11) and families of surviving (n = 14) and deceased (n = 7) patients from 13 ICUs in Alberta Canada, and analyzed data using conventional content analysis. Separate blinded qualitative researchers conducted an independent analysis.

Results

Participants described three phases in the patient/family "ICU journey"; admission to ICU, daily care in ICU, and post-ICU experience. Admission to ICU was characterized by family shock and disorientation with families needing the presence and support of a provider. Participants described five important elements of daily care: honoring the patient's voice, the need to know, decision-making, medical care, and culture in ICU. The post-ICU experience was characterized by the challenges of the transition from ICU to a hospital ward and long-term effects of critical illness. These "ICU journey" experiences were described as integral to appropriate interactions with the care team and comfort and trust in the ICU, which were perceived as essential for a community of caring. Participants provided suggestions for improvement: 1) provide a dedicated family navigator, 2) increase provider awareness of the fragility of family trust, 3) improve provider communication skills, 4) improve the transition from ICU to hospital ward, and 5) inform patients about the long-term effects of critical illness. Analyses by independent qualitative researchers identified similar themes.

Conclusions

Patient and family member-led research is feasible and can identify opportunities for improving care.

SUBMITTER: Gill M

PROVIDER: S-EPMC4975402 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research.

Gill Marlyn M Bagshaw Sean M SM McKenzie Emily E Oxland Peter P Oswell Donna D Boulton Debbie D Niven Daniel J DJ Potestio Melissa L ML Shklarov Svetlana S Marlett Nancy N Stelfox Henry T HT

PloS one 20160805 8

<h4>Introduction</h4>Engaging patients and family members as partners in research increases the relevance of study results and enhances patient-centered care; how to best engage patients and families in research is unknown.<h4>Methods</h4>We tested a novel research approach that engages and trains patients and family members as researchers to see if we could understand and describe the experiences of patients admitted to the intensive care unit (ICU) and their families. Former patients and famil ...[more]

PMID: 27494396

Similar Datasets

Project description:ImportanceIt is unknown which deteriorating ward patients benefit from intensive care unit (ICU) transfer.ObjectivesTo use an instrumental variable (IV) method that assesses heterogeneity and to evaluate estimates of person-centered treatment effects of ICU transfer and 28-day hospital mortality by age and illness severity.Design, setting, and participantsAn analysis of a prospective cohort study from November 1, 2010, to December 31, 2011. The dates of this analysis were June 1, 2017, to June 30, 2018. The setting was a multicenter study of 49 UK National Health Service hospitals. Participants were 9192 deteriorating ward patients assessed for ICU transfer (4596 matched pairs). The study matched on baseline characteristics to strengthen the IV and to balance observed confounders between the comparison groups.ExposuresTransfer to the ICU or continued care on general wards.Main outcomes and measuresMortality at 28 days (primary outcome) and 90 days. To address unobserved confounding, ICU bed availability was the IV for whether or not a patient was transferred. The study used the IV approach to evaluate estimates of treatment effect of ICU transfer and mortality according to age and physiological severity alone and in combination.ResultsBoth comparison groups included 4596 patients. In the group assessed with "many" ICU beds available (median, 7), 52.8% were male, and the mean (SD) age was 65.2 (17.7) years; in the group assessed with "few" ICU beds available (median, 2), 53.3% were male, and the mean (SD) age was 65.0 (17.3) years. The overall 28-day mortality estimates were 23.2% (2090 predicted deaths) if all of the matched patients were transferred vs 28.1% (2534 predicted deaths) if none of the matched patients were transferred, an estimated risk difference of -4.9% (95% CI, -26.4% to 16.6%). The estimated effects of ICU transfer differed by age and by physiological severity according to the National Early Warning Score (NEWS): the absolute risk differences in 28-day mortality after ICU transfer ranged from 7.7% (95% CI, -5.5% to 21.0%) for ages 18 to 23 years to -5.0% (95% CI -26.5% to 16.6%) for age 78 to 83 years and ranged from 3.7% (95% CI, -12.1% to 19.5%) for NEWS of 0 to -25.4% (95% CI, -50.6% to -0.2%) for NEWS of 19. The absolute risk differences for elderly patients (≥75 years) were -11.6% (95% CI, -39.0% to 15.8%) for those with high NEWS (>6), -4.8% (95% CI, -30.5% to 20.9%) for those with moderate NEWS (5-6), and -1.0% (95% CI, -24.8% to 22.8%) for those with low NEWS (<5). The corresponding estimates for subgroups of younger patients (<75 years) were -8.4% (95% CI, -31.0% to 14.1%), -2.1% (95% CI, -21.1% to 16.9%), and 1.4% (95% CI, -14.5% to 17.4%).Conclusions and relevanceThis study using a this person-centered IV approach found that the benefits of ICU care may increase among patients at high levels of baseline physiological severity across different age groups, especially among elderly patients.

Dataset Information

Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research.

Introduction

Methods

Results

Conclusions

Publications

Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research.

Similar Datasets

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