Building Resiliency in Patients and Caregivers to Guard Against Emotional Distress After Brain Injury

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A novel multidisciplinary program created by researchers at Massachusetts General Hospital aims to prevent chronic emotional distress in patients hospitalized in the Mass General Neurosciences Intensive Care Unit (Neuro ICU) and their family caregivers. The six-session Recovering Together program is the first to emphasize the prevention of depression, anxiety and post-traumatic stress disorder (PTSD) through teaching resiliency skills and accounting for the interconnected relationship between a patient and their family caregivers.

"More and more patients are surviving in the Neuro ICU due to substantial advances in medical care," says Ana-Maria Vranceanu, PhD, founder and director of the Integrated Brain Health Clinical and Research Program within the Department of Psychiatry at Mass General. "Unfortunately, many patient survivors and their families experience clinically significant emotional distress after hospitalization for an acute brain injury, such as a stroke, traumatic brain injury or tumors. This early emotional distress, if untreated, tends to become chronic and negatively impacts patients' recovery trajectory and increases both patients' and caregivers' risk for morbidity and mortality."

"While the priority in the Neuro ICU should always be survival," she says, "it is extremely important to assess and address emotional distress as early as possible to prevent chronic symptoms and optimize recovery. Distress is interdependent between patients and caregivers, that is, patients' distress increases distress in caregivers and vice-versa, and if we are to be successful we must work with dyads or pairs of patients and caregivers."

Life After Hospitalization in the Neuro-ICU: Analyzing the Psychological Effects of Hospitalization in the Neuro-ICU for Survivors and Their Caregivers

The physical and cognitive impacts of acute brain injuries that require critical care hospitalization are well-documented. But only recently have we started to learn that many patients and caregivers also develop clinically significant psychiatric symptoms, including depression, anxiety and PTSD.

Research published by Mass General investigators and others has shown that at hospitalization:

• Depression rates are 25% in patients and 19% in primary caregivers
• Anxiety rates are 40% in patients and 42% in primary caregivers
• Post-traumatic stress rates are 20% in patients and 16% in primary caregivers

The Mass General team recently completed a study that follows patients and their caregivers three and six months after hospitalization. Having clinically significant emotional distress at hospitalization is the strongest predictor of having clinically significant distress three and six months later, and this is true for both patients and caregivers.

There is also evidence that emotional distress has a bigger impact on patients' quality of life than the physical or neurological sequelae.

"These symptoms significantly impair survivors' ability to adhere to treatment regimens, further increasing risk for future hospitalizations, as well as morbidity and mortality," says Dr. Vranceanu. "A resilient survivor with multiple stroke-related physical sequalae will have better quality of life and emotional functioning than a stroke survivor with few or no sequalae but lower resiliency."

Caregivers must quickly come to terms with the sudden, unexpected and often life-threatening nature of the acute brain injury and the possibility of physical, cognitive and psychological changes in the survivors. "Emotional distress in caregivers negatively impacts their ability to care for patients, while also increasing their own risk for morbidity and mortality," says Dr. Vranceanu.

Investigating Resiliency and Emotional Stress After Hospitalization in the Neuro-ICU in Survivors and Primary Caregivers

Five years ago, Dr. Vranceanu's team embarked on the challenging task of building a clinical research program focused on understanding risk and resiliency factors for chronic emotional distress in patients admitted to the Neuro-ICU and their families, with the larger goal of developing skills and interventions to prevent it.

"We worked closely with Mass General Neuro ICU nurses, social workers and critical care doctors to develop an embedded, multidisciplinary program of clinical care and consultations triggered by the Neuro ICU medical team," says Dr. Vranceanu. The team also created a rotation for clinical psychology fellows and a research program funded by the National Institute of Nursing Research.

As part of the research component of the program, Mass General investigators conducted a prospective study that follows patients and their caregivers from hospitalization to 3 and 6 months later.

The research uncovered similar high rates of emotional distress in both patients and primary caregivers. It also showed:

• Resiliency factors such as mindfulness, coping, self-efficacy and interpersonal bond are protective against the development of emotional distress at hospitalization
• Emotional distress, once it develops, tends to remain stable and become chronic over time
• Patient and caregiver resiliency and distress factors are interdependent. Within each dyad, one members' early distress impacts not only their own distress trajectory but also that of their partners. Similarly, resiliency is protective against the development of emotional distress in one's self and in one's partner

"Most of the research so far has looked at patients or caregivers alone. But the patient and caregiver witness trauma and cope with the stress of the Neuro ICU together. A lot of times, through this emotional and interpersonal communication, distress travels between the patient and the caregiver," says Dr. Vranceanu. "We were able to show, with statistical validity, that mindfulness and coping are protective for the patient's emotional distress as well as their caregiver's depression. This was similar for anxiety and post-traumatic stress."

These findings were present across all survivors and families in Mass General's Neuro ICU, including those with stroke, traumatic brain injury and brain tumors.

Recovering Together: A Novel Approach to Emotional and Psychological Recovery From Stroke

The researchers next held focus groups with nurses and qualitative interviews with 24 dyads to understand this population's interest in resiliency intervention and the best way to deliver it. The resulting Recovering Together program starts in the hospital with two 20-minute, in-person sessions with a dyad comprised of the patient and their primary caregiver, led by a clinical psychologist.

"We normalize their distress and teach them simple skills like diaphragmatic breathing, to manage intense panic that they experience in the middle of the night. We teach them the skill of dialectics, where they learn to hold two contradictory ideas at the same time as valid, so that they can feel both angry that they had a stroke and happy that they are alive, both at the same time," says Dr. Vranceanu. "We teach them how to stay within the next hour rather then thinking too far ahead, and how to redirect their mind from fear to the present moment. We recorded versions of these skills and uploaded them on the patients and survivors phones and we encourage them to practice these skills individually and together."

After discharge, patients and caregivers transition to four 30-minute sessions focused on adjusting to life at home. They complete these sessions virtually through Telehealth to make scheduling easy and convenient. Sessions teach higher level skills, such as interpersonal communication, role changes, cognitive restructuring, making meaning, adherence to treatment recommendations, adjusting to sequalae and managing fear of recurrence.

"These individuals are living their lives bravely in the face of tragedy and facing it head- and heart-on by working through the issues instead of avoiding or pushing them away," says clinical psychologist Ethan G. Lester, PhD, who is working clinically with patients and families on the floor. "I also get the sense that many of the dyads appreciate that their emotional well-being is held with equal importance to their physical and medical well-being throughout their recovery process."

A Biopsychosocial Model for the Neuro ICU

Dr. Vranceanu's team is following up their prospective study with a single-blind, randomized controlled trial of these interventions to gauge their effectiveness in preventing chronic emotional distress. No prior interventions have been able to do this among critical care patients and families.

Among the 38 dyads they've recruited thus far, preliminary data has been strong. Dyads are very receptive to participating, once they start the program they tend to finish it, they report high satisfaction and perceived benefit from participating.

As part of a larger vision, the researchers also plan to:

• Address the needs of caregivers whose loved ones die in the Neuro ICU by developing grief interventions
• Modify Recovering Together to assist patients who have severe cognitive challenges that prevent them from participating in the current program
• Develop a program for those who engage in unhealthy behaviors that put them at risk for recurrence where the dyads support each other to make meaningful lifestyle changes to prevent future strokes
• Develop a resiliency program for nurses to decrease burnout

"We hope to show the program prevents chronic depression, anxiety and PTSD, and then implement it within all Neuro ICUs across the country," says Dr. Vranceanu. "My hope is for a true biopsychosocial model for the Neuro ICU, where emotional health and lifestyle behaviors are prioritized just as much as physical health, and psychologists work closely with the nursing, social work and critical care doctors to optimize recovery of both mind and body for patients and families."

Learn more about the Mass General Neurosciences Intensive Care Unit

Learn more about the the Integrated Brain Health Clinical and Research Program