The conceptual framework of biographical disruption has dominated studies into the everyday experience of chronic illness. Biographical disruption assumes that the illness presents the person with an intense crisis, regardless of other mitigating factors. However, our data suggests that the lives of people who have a particular illness that is notably marked by sudden onset are not inevitably disrupted. Extensive qualitative interviews were conducted with a sample of veteran non-Hispanic white, African-American, and Puerto Rican Hispanic stroke survivors, at one month, six months and twelve months after being discharged home from hospital. Narrative excerpts are presented to describe specific discursive resources these people use that offset the disrupting connotations of stroke. Our findings suggest a biographical flow more than a biographical disruption to specific chronic illnesses once certain social indicators such as age, other health concerns and previous knowledge of the illness experience, are taken into account. This difference in biographical construction of the lived self has been largely ignored in the literature. Treating all survivor experiences as universal glosses over some important aspects of the survival experience, resulting in poorly designed interventions, and in turn, low outcomes for particular people.
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 alone the crisis of discharge and all of the new responsibilities with which they must deal.
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