Experiences of family of individuals in a locked in, minimally conscious state, or vegetative state with the health care system. (5th January 2021)

• Record Type: Journal Article
• Authors: Munce, Sarah Elizabeth Patricia; Webster, Fiona; Christian, Jennifer; Gonzalez-Lara, Laura E.; Owen, Adrian M.; Weijer, Charles
• Is Part Of: Brain injury. Volume 35:Number 1(2021)
• Page Start: 8
• Page End: 14
• Publication Date: 2021-01-05
• Subjects: Vegetative state -- family members -- caregivers -- health care system -- qualitative; Brain damage -- Periodicals; Brain -- Wounds and injuries -- Periodicals; Brain Injuries -- Periodicals; 617.481
• DOI: 10.1080/02699052.2020.1858494
• Languages: English
• ISSNs: 0269-9052

Abstract

ABSTRACT: Primary Objective : To understand the experiences of family members of individuals in a locked-in state (LIS), minimally conscious state (MCS), or vegetative state (VS) with the health-care system when caring for their family member. Research Design : The study adopted a qualitative descriptive approach drawing on central tenets of constructivist grounded theory described by Charmaz. Our analysis drew on emphasizing connections between theory, concepts, and empirical data using a constant comparative method. Methods and Procedures : Semi-structured interviews were conducted with family members of individuals in a LIS, MCS, or VS. Participants were recruited between June 2014 and December 2016. Main Outcomes and Results : 22 interviews were conducted, which comprised interviews with 12 family members. The following themes were identified: care coordination challenges, lack of flexibility in health-care policies, and inappropriate care settings. Conclusions : Family members of individuals in a LIS, MCS, or VS described playing a significant role in the lives of their family member. Based on the results of this study, flexibility in health-care policies and/or programming should be adopted in the face of the challenges identified. Implementation of interventions to support caregivers and transitions is increasingly important.