Most people are familiar with the physical and cognitive challenges that stroke patients face in the aftermath of a stroke.

What is less known—but equally impactful—is the emotional stress caused by the stroke itself, and the psychological toll it can take on both stroke survivors and their primary caregivers.

Clinically significant symptoms of depression, post-traumatic stress and anxiety are common after stroke and can affect both the patient and their primary caregiver. This early emotional distress, if untreated, often becomes chronic with negative long-term health effects for both patients and caregivers.

Emotional distress in patients is associated with poor medication adherence, slower recovery rates, the need for more outside assistance to help with care, and a greater risk of death. Emotional distress in caregivers is associated with challenges providing high quality care to the patient, as well as increased risk of one’s own morbidity and mortality.

As such, it becomes important to address emotional distress at the dyadic level (e.g., with both patient and caregiver) to prevent a snowball effect of chronic negative emotional and physical health outcomes. 

Researchers at Massachusetts General Hospital recently conducted a study to identify the factors that contribute to emotional stress after stroke, identify tools and strategies that would provide the most help, and determine an effective timeline and delivery system for an intervention program.  

The study, Preventing Chronic Emotional Distress in Stroke Survivors and Their Informal Caregivers. was conducted by a multidisciplinary team led by Jessica McCurley, PhD, MPH, and Ana-Maria Vranceanu, PhD, from Mass General’s Integrated Brain Health Clinical and Research Program, in collaboration with the nursing and medical team in the Neuroscience Intensive Care Unit. The study was funded by a grant from the American Heart Association to Ana-Maria Vranceanu, PhD.

The Emotional and Psychological Toll of Strokes

Female stroke patients were more likely to feel distress associated with identity and role changes—going from a caretaker role to that of someone who needs care — though these feelings were experienced by some male patients as well.

Primary caregivers reported feelings of anxiety and guilt—particularly when it came to leaving the hospital to tend to other matters while the stroke patient was still in recovery.

Both patients and caregivers also reported sadness, crying and feelings of hopelessness and helplessness.

How an Intervention Could Help

All patient-caregiver pairs said that having a supportive team of friends and family and a communicative and supportive medical staff would be important to their recovery process.

They agreed that coping strategies such as problem solving, gratitude, mindfulness, optimism, engagement in hobbies and spirituality had worked for them in the past, though they worried that it would be harder to use them post-stroke.

In terms of specific skills that would be helpful, participants identified:

• Strategies for managing the uncertainty and intense emotions of the stroke experience
• Coping skills to help with stress, uncertainty, and intense emotions of the stroke experience, as well as the fear of stroke recurrence
• Learning more about why the stroke happened and ways to prevent future strokes
• Making meaning of the stroke and the effect it will have on both of their lives
• Adjusting to the role changes between the patient and the primary caregiver

The nurses interviewed suggested that the intervention address negative thoughts about the stroke and caregiving, such as guilt and self-blame. Participants should be encouraged to focus on the present moment, rather than evaluating the patient’s progress toward recovery, they said.

Both the nurses and the patient/caregivers agreed that starting the intervention during hospitalization and continuing it remotely via live video after discharge would be more effective than having the patients and caregivers return to the hospital to continue the program.

What’s Next

The research team used this feedback to design a skills-based resiliency program to prevent chronic psychiatric distress in both stroke patients and their caregivers.

The new program, called “Recovering Together,” is the first to focus on preventing emotional stress (rather than treating it after it develops), and the first to focus on the interconnected relationship between the patient and primary caregiver.

The program starts at hospitalization with two brief in person sessions and transitions to four live video sessions after discharge. Patients and caregivers participate together in all sessions.

About the Mass General Research Institute
Research at Massachusetts General Hospital is interwoven through more than 30 different departments, centers and institutes. Our research includes fundamental, lab-based science; clinical trials to test new drugs, devices and diagnostic tools; and community and population-based research to improve health outcomes across populations and eliminate disparities in care.
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