What do mechanically ventilated patients want? A sense of normalcy and partnership.

Abstract

Background: Research was carried out at the Johns Hopkins Hospital. Mechanically ventilated patients in the ICU and their family members are the target population.

Problem: Mechanical ventilation (MV), although life saving, is associated with significant morbidity and mortality. Approximately 35% of patients receiving prolonged MV die in the hospital, and only 31% are discharged home. Of those who are discharged, almost half suffer from persistent debilitating complications including significant physical, cognitive, and psychological disability. Prevalence of psychiatric morbidity including depression, anxiety, and PTSD, and an inability to rejoin the workforce remain unacceptably high with rates as high as 50% at 1 year after discharge. This severe disability and trauma experienced in ICU survivors needs urgent attention, and improving patient care and reducing complications for MV patients is a global priority. While there has been a significant investment of resources to reduce complications from MV, few studies have directly engaged patients and families in this common goal. Our study sought to better understand the experiences of patients and families to help design future interventions to empower them to better understand, participate in their own care, and reduce complications from MV.

3A) Assessment of problem and analysis of its causes: Our study seeks to better understand the experiences of mechanically ventilated patients and their families to design interventions would humanize the ICU environment while maintaining normalcy and restoring dignity for patients and families. Between May 9, 2016 - April 18, 2017, semi-structured interviews were conducted with 25 former MV patients and their family members. Using purposive convenience sampling, potential patient and family partners were identified, screened, and recruited. Pertinent domains discussed in interviews included 1) knowledge of key ICU experiences related to mechanical ventilation, 2) complications and care issues associated with MV, 3) perceptions of commonly recommended strategies to reduced MV complications, 4) effective strategies to communicate this content, and 5) strategies to engage family members in care delivery. Interviews were digitally recorded and transcribed.

Intervention: Based on participant feedback, we are developing a multifaceted toolkit to improve the experience and participation of MV patients and their families. The toolkit includes empowering quotes from participants; strategies for maintaining a sense of normality from daily life outside the ICU; a section on incorporating day-to-day activities into routine in the ICU, which participants said gave them a sense of purpose; goal setting strategies; tips for interacting with the ICU staff; and descriptions of common MV and ICU features, e.g., mechanical ventilation, tracheostomy, staff roles, and machine sounds.

Strategy for change The proposed toolkit will have two overarching components. The principal is a resource to empower patient and family communication, engagement and wellness. The second section is a guide for staff to enable patients and families to use their portion of the kit.

Measurement of improvement: The study design is rooted in phenomenological, theoretical qualitative research. We used a combination of inductive and deductive processes to identify thematic codes. Tentatively, the pilot intervention impact will be measured using tailored MV patient and family satisfaction surveys.

Effects of changes:

Lessons learnt and 9) Messages for others: Patients and their families consistently and uniformly described MV as a frightening, and isolating experience, and welcomed interventions that would 1) improve their understanding of mechanical ventilation and its complications, and 2) encourage direct patient or family participation to reduce MV complications and create a lasting partnership with their healthcare team.

Please describe how you have involved patients, carers or family members in the project: A multidisciplinary team inclusive of MV patients and family caregivers developed the interview facilitator guide. In-depth interviews and focus groups were conducted with 25 former patients and their family members. The toolkit is based on feedback from patients and families, and a Patient and Family Council provided input on the toolkit as it was developed.

Please declare any conflicts of interest below. The study is funded by the Agency for Healthcare Research and Quality. We have no conflicts of interest.

Ethics Approval: The IRB at Johns Hopkins approved the study.