The Importance of Narratives in Stroke Rehabilitation
Boylstein, Craig, Rittman, Maude R., Generations
Our research focus is the assessment of functional activity, specifically how functional ability is assessed for stroke survivors. Central research questions are the following: What is the relationship between quantitative assessments of functional status and day-to-day functioning? And how can narratives be used to help guide rehabilitative programs for stroke survivors living in the community? Rehabilitation policy emphasizes quantitative measures of physical functioning, with these measures often used to assess existing practices and develop new institutional directives. Stroke patients rated high in motor functioning and communicative ability are frequently discharged home with little if any follow-up services provided. Rehabilitative specialists have not adequately addressed rehabilitation in home settings, traditionally paying little attention to home contexts or the everyday lived experiences of patients.
In order for quantitative results to be of practical use, the operational definitions used to define the variables in the research-that is, the specific procedures for measuring each variable-must capture the lived, practical experiences of respondents (Cicourel, 1964). In our study, high-functioning stroke survivors time and time again communicated how their lives have changed since having the stroke. A few participants noted little change in their daily lives, but the majority of participants reported how they have slowed down, how routine tasks such as mowing the lawn and putting on their socks have become extremely laborious, sometimes impossible chores, and how their interpersonal activities have become greatly limited.
The relationship between a scientifically constructed world and the everyday experiences of the people being studied is often left unquestioned. One measurement scale may be compared with another as a method to demonstrate validity, but it is extremely rare for quantitative measures to be compared with participants' practical accounts of everyday life. Doing so, however, enables researchers to match the ways participants attach meaning to their lived experiences with the responses reported on quantitative measurement scales.
The links among body, self, and world commonly neglected in quantitative analyses become meaningful in respondents' narratives. For example, the Functional Independence Measure (FIM) scores generated in our sample of stroke survivors indicate that they are already high in motor functioning when discharged from the hospital. The Frenchay Activities Index (FAI) enables us to categorize these stroke survivors as low, moderate, or high in domestic, work and leisure, and outdoor activities. While this typology provides some useful descriptive information, it fails to distinguish among stroke survivors who are categorized in the same measurement construct. The typology also fails to convey the personal meaning these categories have for stroke survivors. Although similarly categorized in quantitative analysis, our respondents employ different recovery strategies, ranging from sitting on the couch waiting for the medication effects to cure them to constantly moving their bodies, thereby testing their physical limits.
TRADITIONAL STROKE REHABILITATION
Medical practitioners use the Functional Independence Measure in a wide variety of circumstances, particularly in acute rehabilitation settings. It is the most widely applied instrument in determining patients' rehabilitative status (Williams et al., 1997). The FIM is the tool and measurement system of the Uniform Data System for Medical Rehabilitation (UDS). The goal of the UDS is to nationally document rehabilitation outcome results as objectively as possible (Brown et al., 1990). Approximately 60 percent of U.S. rehabilitation hospitals participate in the UDS (Hinkle, 2000). The UDS collects FIM results from more than 400 facilities nationwide (Williams et al., 1997), serving as a uniform language and measurement system for rehabilitation (Brown et al. …