OBJECTIVE: Stroke is a common cause of disability worldwide. A national research priority for stroke rehabilitation cited in the AHCPR Clinical Practice Guidelines is the development and validation of standardized tests for monitoring post-stroke rehabilitation (p.8), including quality of life (QOL). Existing QOL measures have been developed from either researcher determined domains, or those from healthy populations, with a focus on health and functioning. None address the meaning the stroke has for the individual, a major concern for nurses. An existential-phenomenological inquiry found that the essence of life following stroke for the stroke survivor was a paradoxical sense of continuity, while at the same time discontinuity in the experience of self (Secrest & Thomas, 1999). Continuity and discontinuity were defined for the individual through themes of (a) control/lack of control, (b) independence/dependence, and (c) connection/disconnection with others. The purpose of this study was to develop a valid, reliable, and parsimonious measure of QOL following stroke, derived from the thematic meaning for the stroke survivors themselves. DESIGN: A 45-item summative scale questionnaire, called the Continuity of Self Scale (CSS) was developed from the above themes. Content for the specific statements supporting the themes were derived directly from the transcripts. Each of the themes had 10-12 representative statements, which were reviewed by a variety of content experts, including stroke survivors. The format of the instrument, including response categories, typeset, etc. was based upon recent studies of instrument effectiveness in the stroke population. POPULATION: Stroke survivors. SAMPLE: The sample consisted of 55 stroke survivors, recruited from rehabilitation hospitals, a stroke support group, and the community. Those with any of the following criteria are excluded: 1) prior stroke, 2) inability to complete instruments because of language or cognitive impairments, 3) significant comorbidities affecting QOL (e.g., heart failure, dialysis, AIDS, metastatic cancer, neurological or musculoskeletal disorders), and 4) less than 18 years. SETTING: The instruments were administered in rehabilitation hospitals and in the community (at community centers and/or in participants' homes). YEARS: Data were collected between October 2001 and December 2002. CONCEPT: The concept under study was quality of life following stroke. The dimensions of the concept were derived from an existential-phenomenological inquiry. METHODS: In addition to the CSS (described above), a Barthel Index (measure of functional ability), a Cantril Ladder for pre and post stroke quality of life, and demographic data were administered in random order to stroke survivors. In order to include participants with a variety of disabilities, the instruments were read to each participant by a trained research assistant. Participants either pointed to, or stated their responses. FINDINGS: Respondents' age range was 48-87 years, 55% were female, with a mean of 20 weeks since the stroke. A principal components factor analysis yielded two (2) scales ("Continuity" and "Discontinuity") with 10 items each. Chronbach's alpha for the Continuity Scale=.869; Discontinuity=.874. The Continuity Scale was significantly positively correlated with the Barthel Index Score (r=.393; p=.005), and with the Cantril QOL poststroke (r=.498; p=.000). The Discontinuity Scale was significantly negatively correlated with the Cantril QOL poststroke (r=-.378; p=.004), and there was no significant relationship with the Barthel Index Score. Neither Continuity nor Discontinuity was significantly correlated with age, hand dominance, weeks since stroke, education or number of people in the home. CONCLUSIONS: The two robust scales that emerged from the factor analysis were conceptually congruent with the existential-phenomenological study. While Continuity was related to (but more than) functional ability, Discontinuity was not, thus studies utilizing functional abilities as a main component of QOL measurement are missing an important dimension for stroke survivors. IMPLICATIONS: Existing QOL measures do not capture the whole experience for the stroke survivor, nor do they adequately capture the impact of what nursing has to offer. This instrument will provide the means to evaluate the impact of nursing interventions (many of which were suggested in the initial phenomenological study) on the quality of life for stroke survivors, the most common patient population in rehabilitation. Further study on the instrument is underway.
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