Early Psychosocial Support Needed for Families of Patients Who Survive ICU Admission for Coma

There's currently unprecedented excitement in the medical community about the prospect of "curing coma." An increasing number of patients with severe acute brain injury (SABI) undergo rehabilitation for extended periods after ICU discharge for observation of their clinical trajectories and quality of life.

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These trends are important for advancing the field of coma recovery, but sometimes aggressive care of SABI can come at profound psychosocial cost to patients' families.

Researchers at the Yale School of Medicine and Massachusetts General Hospital recently completed a multicenter qualitative study of coma survivors' family caregivers after important goals-of-care discussions had been held. However, patients were still in the ICU or had only recently been discharged, and caregivers were still faced with uncertainty about the patient's recovery.

Based on their findings, David Y. Hwang, MD, formerly a neurocritical care fellow at Mass General and now at the at the University of North Carolina, Sarah M. Bannon, PhD, a former clinical psychology research fellow now at Mount Sanai, Ana-Maria Vranceanu, PhD, founding director of the Center for Health Outcomes and Interdisciplinary Research (CHOIR) within the Department of Psychiatry, and colleagues emphasize, in Neurocritical Care, the importance of early psychosocial support for such caregivers.

Methods

Between May 2021 and January 2022, the researchers conducted 60-minute semi-structured interviews with 30 family caregivers of patients with SABI who had been admitted with coma to 14 neuroscience ICUs across the U.S.

The patients had coma due to stroke, traumatic brain injury, or hypoxic–ischemic encephalopathy; were expected by the clinical team to survive their hospitalization; and did not have a concurrent diagnosis of terminal illness. They had varying degrees of initial recovery, but all families had recently decided to prolong life-sustaining therapy beyond the decision regarding tracheostomy and/or feeding tube placement.

Psychosocial Stressors

The researchers identified ten interrelated themes about psychosocial stressors experienced by caregivers and organized them into three categories:

Practical stressors

• Understanding changing symptoms; perceived lack of clear and reliable information about medical terminology, treatment options, prognosis, recovery trajectory, and subsequent care
• Making medical decisions and navigating care on the patient's behalf; inability to plan for the future with limited information
• Abrupt transition to caregiving (e.g., the emotional and physical stress of commuting to the hospital, navigating patient's medical care, balancing responsibilities at home)
• Additional life disruptions (e.g., loss of work, financial impact of medical procedures, parenting, navigating caregiver's medical conditions)

Social stressors

• Overwhelming confusion and frustration about communicating with healthcare providers, hospital staff, and insurance providers, especially their tendency to focus only on immediate issues
• Being asked to inform family and friends about the patient's condition while working to understand and process the patient's prognosis and their own emotions
• Inability to communicate with patients; concern about disappointing them

Emotional stressors

• Uncertainty about prognosis, timing of discharge, and patient's preferences for medical decisions
• Multiple simultaneous losses (loss of normalcy, familiar routines, and roles, shared life with patient)
• Co-occurring overwhelming and sometimes contradictory emotions

Coping Strategies

Eight themes about caregiver coping strategies were organized into two categories:

Psychological coping strategies

• Avoidance/distraction in response to difficult emotions and experiences—reported by nearly all caregivers
• Cultivating positive emotions through reflection, prayer, and daily routines
• Mindfulness, acceptance, and problem-solving

Behavioral coping strategies

• Self-education
• Healthy lifestyle behaviors and self-care
• Family and social support
• Positive relationships with medical providers, including attending rounds
• Making meaning through experiences such as helping other families in similar circumstances, volunteering, engaging in other caregiving roles, and participating in research and advocacy

Many caregivers acknowledged difficulty with enacting and sustaining coping strategies.

Looking Ahead

The researchers designed this study to inform the development of an intervention for families that are transitioning out of the ICU to become long-term caregivers for patients with SABI. The goal will be to teach or support caregivers' engagement in adaptive coping skills, preventing transition from acute to chronic emotional distress. With funding from the Neurocritical Care Foundation, Dr. Vranceanu, Alex Presciutti, PhD, a staff psychologist at CHOIR, and Dr. Hwang will use the information from this study to adapt Recovering Together. This evidence-based intervention prevents emotional distress among patients and caregivers with an acute brain injury developed by Dr. Vranceanu and colleagues, for the unique needs of caregivers of comatose patients. The larger goal is implementation across all Neuro-ICU to support these caregivers.

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