How do families of relatives with prolonged disorders of consciousness experience care decision-making? A systematic review and thematic synthesis of qualitative research

Following a severe brain injury, some people develop a prolonged disorder of consciousness (PDoC). These people experience acute and life-long issues that require care from others. Family members are often involved in their relatives' care, which includes contributing to treatment decision processes. These can be complicated given issues around uncertainty of diagnosis, prognosis, and their relatives' wishes. This systematic review aimed to synthesize relevant qualitative research to develop a better understanding of how families of relatives with PDoC experience care decision-making. The Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines were followed. Five databases were searched for terms associated with PDoC, families, decision-making, and qualitative research. Twenty-one studies involving 357 family members met inclusion criteria, and the methodological quality of included studies was appraised using the Critical Appraisal Skills Programme (CASP) qualitative studies checklist. Thematic synthesis identified four themes: (1) A duty to represent their relative, (2) a wish to feel certain, informed, and involved in decision-making, (3) the ethical challenges of life and death decision-making, and (4) navigating the difficulties of shared decision-making. The review offers novel insights into how families experience care decision-making for their relatives with PDoC. Implications for clinical practice for relatives with PDoC, their families and professionals are made.