The crisis of stroke: experiences of patients and their family caregivers

Top Stroke Rehabil. 2011 Nov-Dec;18(6):786-97. doi: 10.1310/tsr1806-786.


Purpose: Approximately 4.8 million stroke survivors are living in the community with some level of disability requiring the assistance of family caregivers. Stroke family caregivers are often unprepared for the demands required of them. The purpose of this grounded theory study was to explore the needs of stroke patients and their family caregivers as they transitioned through the stroke care continuum from acute care to inpatient rehabilitation to home.

Methods: Thirty-eight participants, 19 recovering stroke patients (11 male, 8 female), 15 primary family caregivers (14 spouses, 1 mother), and 4 adult children were interviewed during their stay at a rehabilitation facility and within 6 months of discharge. Interview questions were loosely structured and focused on the stroke experience and how patients and caregivers were managing postdischarge. Data were analyzed using dimensional and comparative analysis.

Results: Findings were organized in a conceptual framework illustrating the trajectory of the crisis of stroke. Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory: the stroke crisis, expectations for recovery, and the crisis of discharge. Findings from this study suggest that as caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing, and they are often underprepared to take on even the basic tasks to meet the patients' needs on discharge.

Conclusion: Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let the crisis of discharge and all of the new responsibilities with which they must deal.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Caregivers / psychology*
  • Continuity of Patient Care
  • Female
  • Humans
  • Inpatients
  • Male
  • Middle Aged
  • Patient Discharge
  • Retrospective Studies
  • Stroke / nursing
  • Stroke / psychology*
  • Stroke Rehabilitation*
  • Survivors
  • Young Adult