Study highlights the emotional and social challenges of stroke recovery

Nirupama Yechoor, MD, MSC, of the Department of Neurology at Massachusetts General Hospital, is the senior author of a paper published in JAMA Network Open, "Coherence of Stroke Survivors' Lived Experiences and the Stroke Specific Quality of Life Scale."

Q: How would you summarize your study for a lay audience?

As doctors who care for stroke survivors, we recognize that recovery is a long journey shaped by physical, emotional, mental and social challenges that extend beyond the hospital walls. We also recognize that many changes are needed to help all stroke survivors achieve their best recovery, which means optimizing both their health and their wellbeing. The first step to improving stroke recovery is understanding the lived experiences of stroke survivors and their care partners.

We conducted one of the largest qualitative studies with stroke survivors and care partners within the United States to better understand what wellbeing means in recovery. Through the lived experiences that participants shared with us, we identified key factors that shape physical and emotional wellbeing after stroke.

While medical care usually focuses on building physical strength and improving movement, stroke survivors struggle with additional emotional challenges such as facing stigma, living with uncertainty, and losing a part of their identity. Our study highlights the importance of integrating stroke survivors' lived experiences in stroke research and provides a foundation for evaluating the nonclinical determinants that shape health, wellbeing and recovery.

Q: What was the main goal of your study?

Our goal was to understand the factors that shape physical and emotional wellbeing after stroke - as described by stroke survivors - and to assess whether the questionnaires that we commonly use in research or at the doctor's office effectively capture all of these elements.

Q: What methods or approach did you use?

We applied qualitative research methods and studied the experiences of 41 stroke survivors and caregivers across the U.S. from October 2023 until December 2024.

We met stroke survivors and caregivers in small groups and asked them about their experiences related to physical and emotional wellbeing during recovery. We also compared stroke survivors' experiences with questions included in the Stroke Specific Quality of Life or the SSQoL survey, which is commonly used by doctors and researchers. By comparing the two methodologies, we identified factors related to physical and emotional wellbeing that are well-represented in traditional medical care, and those areas that may be overlooked.

Q: What did you find?

We found that stroke recovery is shaped by more than physical factors - stroke survivors shared that their emotional recovery is just as important. We found five key factors of reduced physical functioning and social participation: the loss of independence, the fear of uncertainty, reduced community participation, feelings of shame and decreased physical mobility.

 On comparing these factors to the SSQoL, we found that the SSQoL adequately captured some of these factors, but only partially captured other important factors like shame and uncertainty. Our study highlights a potential care gap in how stroke clinicians can address recovery for stroke survivors.

Q: What are the implications?

The implications of these findings are twofold. First, we have partnered with stroke survivors to identify their priorities that clinicians should address during follow-up care. Second, we have identified gaps in measuring these priorities, highlighting the need for alternative care models that address recovery in a more comprehensive way.

Q: What are the next steps?

The next steps are to use these findings to develop interventions that address more than physical recovery in stroke care, and are developed with patient and care partner input. We believe a key component that has been missing from stroke research is understanding the lived experiences of stroke survivors.

We would like to thank all of the stroke survivors and care partners who collaborated with our group for this research study. Their willingness to help other stroke survivors, their honesty in sharing their stories, and their resilience in recovery has been inspiring for our team to continue this important work.