Perhaps because of its all-encompassing effects on one's ability to function in basic ways, considerable insight into the human experience of a stroke can be gained through a subjective research method. Qualitative research focuses on the complexities of how human beings make sense of their experiences. Implicit in this approach is that there are multiple subjective realities, which are constantly in flux. In contrast to the quantitative survey method, therefore, qualitative data are typically collected through in-depth interviews, focus groups, or participant observation, which are better able to capture the subjective dynamics of individual experience. Data collection and analysis occur simultaneously and interactively (Lofland & Lofland, 1995
, p. 181), and the analytic phase typically begins as soon as the first data are collected because the findings are often used to direct the subsequent interviews (Strauss & Corbin, 1990). Transcripts are examined for concepts or themes using codes to identify and label them (Luborsky, 1994
). In contrast to quantitative methods, therefore, patterns replace variables as the unit of analysis.
In contrast to the stability implied in the quantitative relationships, results from qualitative studies reveal that the trajectory of life after a stroke is a dynamic process characterized by uncertainty and variability, where unexpected plateaus or reversals in the recovery process can foster a sense of frustration and despair (Becker & Kaufman, 1995
; Clarke & Black, 2005
; Doolittle, 1992
). Qualitative studies also emphasize the individual's perspective in the stroke experience and find that survivors define their losses and their recovery according to their own definition of the important or meaningful activities in life rather than in some normative definition of disablement (Clarke & Black, 2005
; Dowswell et al., 2000
; Ellis-Hill, Payne, & Ward, 2000
; Gubrium, Rittman, Williams, Young, & Boylstein, 2003
; Lister, 1999
; McKevitt, Redfern, Mold, & Wolfe, 2004
; Mumma, 1986
; O'Connell et al., 2001
; Pound & Gompertz, 1998
). For example, in a 5-year descriptive study of 100 stroke survivors, Becker (1993)
discovered that people described their stroke experience based on the loss of their own subjective definitions of what was meaningful to them. Statements such as “I can't wear high heels any more,” “My handwriting is not as good as it was,” and “Sometimes I can’t get the right words out” (Becker, 1993
, p. 154) reflect the fact that individuals make sense of their stroke according to their own perceptions of what is important to them in their lives.
Expanding on this concept, Charmaz (1983
), Kaufman (1988a
, and Corbin and Strauss (1987)
proposed that the impact of a chronic disabling condition on subjective well-being is largely a function of the extent to which disabilities affect social roles or aspects of self that constitute salient components of an individual's identity. Using participant observation and open-ended interviews, Kaufman (1988b)
found that the poststroke experience was largely an exercise in reestablishing a sense of identity. She noted that individuals searched for ways to build links between their new poststroke lives and their former selves. Instead of allowing their disabilities to overwhelm their lives, individuals sometimes attempted to find a way to “accommodate to an illness through altered or changed performances, and in doing so to give meaning to life despite ongoing and progressive body failure” (Corbin & Strauss, 1987
, p. 271). As Becker (1993
, p. 157) notes, a disabled stroke survivor may wish to play a nine-hole game of golf, but it may instead be sufficient for that individual to be able to “walk to the television and turn on a golf game” in order to maintain salient aspects of self and identity.
Yet, these qualitative studies are by necessity based on small and/or select samples, and as a result, the generalizability of the findings to the wider stroke population is limited (McKevitt et al., 2004
). Moreover, qualitative results are not able to tell us how many survivors experience mobility restrictions or decreased well-being, nor is it possible to quantify the relative effect of different impairments on well-being. Qualitative and quantitative approaches therefore have made separate (each substantively important) contributions to our understanding of the stroke experience. But because these approaches are typically conducted in different studies, our understanding of stroke relies on research developed from two separate methodologies. As a result, we have a host of quantitative studies outlining the factors associated with subjective well-being in large, often representative, samples of stroke survivors. We can then turn to the somewhat smaller body of qualitative studies to try to find results that may help us to understand the reasons why and how a stroke affects well-being. But in this process of trying to link findings across disparate studies, we run the risk of misattributing findings from one methodological arena across another.
For example, we know from quantitative survey data that stroke survivors with residual mobility impairments report a decreased sense of well-being. Separate studies using qualitative techniques have helped us to understand that this is because these impairments generate feelings of loss (of activities, abilities, social connections, personal characteristics, and independence) and are much more likely to have a negative effect on well-being when an individual's identity is tied to their lost ability (a recreational athlete, e.g., who loses his/her mobility). But for other less common or more complex associations, such as the finding that social supports moderate the impact of functional limitations on well-being, qualitative work may not exist that focuses specifically on the particular statistical interaction we are hoping to understand. Integrating such a patchwork of findings across methods therefore leaves large holes in our understanding of the stroke experience. Our knowledge is constrained to the small pool of more common findings that exist across both quantitative and qualitative studies (e.g., the effects of disability). As a result, we remain limited in our understanding of the many subtle aspects of the stroke experience, particularly in small subpopulations of stroke survivors (e.g., by race/ethnic group or in the very old). A more complete understanding of the stroke experience can therefore be gained by integrating quantitative and qualitative methods within a single research study.