“It gets better. It can´t be worse than what we have been through.” Family accounts of the minimally conscious state

ABSTRACT

Objectives: The aim of this qualitative study was to explore family life when a family member is in a chronic minimally conscious state (MCS). Experiences with the health care system were also explored.

Methods: As part of a larger qualitative study of family life after a family member suffers severe physical injury, we conducted a focus group interview with five family members of three patients in a chronic MCS. The participants included three mothers, one father, and one sibling. The length of time since the brain injuries was four, four, and ten years. A thematic analysis was conducted.

Results: Three main themes emerged. Each family reflected on the challenges of maintaining family unity. They also revealed how they had dealt with the ambiguity and severity of the situation, including the communication with the health care system. Finally, they described their journeys back toward a normal, everyday family life.

Conclusions: The findings demonstrate challenges faced by family members but also their capacity to withstand and overcome adversity. Clinicians are reminded to maintain a long-term perspective and understand the importance of helping families adjust, maintain hope for a better future, and mitigate their psychological pain.

KEYWORDS:

• Traumatic brain injury
• disorders of consciousness
• family

Acknowledgments

The authors would like to convey their gratitude to the participants who agreed to share their most challenging experiences with us. Thank you also to Anne-Cathrine Kraby from Sunnaas Rehabilitation Hospital for her collaboration in this study. Our best wishes for the future to Laura, Debbie, Paul, and their family and friends.

Disclosure Statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper. Extrastiftelsen, Sunnaas Rehabilitation Hospital and the University of Oslo funded this research.