Experiences of family of individuals in a locked in, minimally conscious state, or vegetative state with the health care system

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.

KEYWORDS:

• Vegetative state
• family members
• caregivers
• health care system
• qualitative

Declaration of interest

C Weijer receives consulting income from Eli Lilly and Company Canada.

Additional information

Funding

This research was funded by the Canadian Institutes of Health Research (Grant Number 300292).