Mapping overlooked challenges in stroke recovery

Researchers at the Department of Neurology at Massachusetts General Hospital conducted one of the largest qualitative studies with stroke survivors and care partners within the United States to better understand what well-being means in recovery. Through the lived experiences of the participants, the team identified key factors that shape physical and emotional well-being after stroke.

The paper, titled “Coherence of Stroke Survivors’ Lived Experiences and the Stroke Specific Quality of Life Scale,” is published in JAMA Network Open.

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. The 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, well-being and recovery.

The goal of the study was to understand the factors that shape physical and emotional well-being after stroke—as described by stroke survivors—and to assess whether the questionnaires that are commonly used in research or at the doctor’s office effectively capture all of these elements.

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

Stroke survivors and caregivers were asked about their experiences related to physical and emotional well-being during recovery. The team 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, they identified factors related to physical and emotional well-being that are well-represented in traditional medical care, and those areas that may be overlooked.

The researchers found that stroke recovery is shaped by more than physical factors—stroke survivors shared that their emotional recovery is just as important. They 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, the team found that the SSQoL adequately captured some of these factors, but only partially captured other important factors like shame and uncertainty. This study highlights a potential care gap in how stroke clinicians can address recovery for stroke survivors.

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

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.