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The Relationship of Continuity and Discontinuity, Functional Ability, Depression, and Quality of Life over Time in Stroke Survivors (CE)
The purpose of this study was to examine the concepts of continuity and discontinuity over time and to explore their relationships with depression, functional ability, and global quality of life (QOL). In a repeated-measures design, 51 participants in an inpatient rehabilitation hospital were entered within 1 month of stroke and followed at 3 and 6 months; 33 completed the study. Depression, functional ability, and QOL all changed significantly between time 1 and time 2 and remained so through time 3 (6 months after stroke). There were no changes in continuity or discontinuity over time. Continuity/self, continuity/other, and discontinuity correlated moderately with depression and QOL at time 1; discontinuity and functional ability at time 1 correlated moderately with QOL at time 3. Functional ability related to discontinuity at time 3 and with QOL, otherwise, functional ability did not relate to the other variables, such as depression, in any time period. Although other variables changed over time, the sense of continuity/discontinuity did not. One of nursing’s contributions to stroke survivors’ rehabilitation may be in helping patients feel more continuous and less discontinuous with their prestroke sense of self.
Stroke continues to be the leading cause of disability in the United States, with an estimated prevalence of 2.6% of the total population and an annual incidence of 700,000 (American Heart Association [AHA], 2006). Stroke survivors are one of the most common patient types nurses encounter in rehabilitation. Kierkevold (1997) viewed nurses’ responsibility in caring for stroke survivors as one of interpreting, consoling, conserving, and integrating. However, she noted that the role of nurses in rehabilitation is often overshadowed by other disciplines because of their concrete, discrete roles. Nursing is often viewed as a supportive discipline in rehabilitation rather than one with its own contribution to make to the patients’ recovery. Many of the measures documenting the effects of stroke rehabilitation have functional abilities as the focus. Although they are important, this focus reflects the various disciplines involved in rehabilitation but does not necessarily capture the effects of the holistic, integrative role nursing plays. In order to demonstrate nursing’s contribution to rehabilitation, instruments sensitive to nursing interventions must be sought.
An instrument measuring continuity and discontinuity of self after stroke, the Continuity/Discontinuity of Self Scale (CDSS), was developed from an existential-phenomenological study (Secrest & Zeller, 2003). In this study, the essence of life after stroke emerged as a paradoxical sense of both continuity and discontinuity of self that was experienced through themes of control (or loss of), independence (or loss of), and connection with others (or disconnection) emerging from a ground of effort and loss (Secrest & Thomas, 1999). These themes were not found in instruments currently in use with stroke survivors. The themes represented important aspects of survivors’ lives from which nurses can assess needs and assist in integrating the gains made in therapies into meaningful activities. Continuity and discontinuity are viewed as dimensions of quality of life (QOL).
The CDSS was developed using quotes representing each of the themes in the qualitative study for a total of 45 items (Secrest & Zeller, 2003). The items were reworded and tested with stroke survivors, nurses, faculty, and students. The response set for the CDSS was limited to three choices (“agree,” “neutral,” “disagree”) because, although more choices may give higher sensitivity, more choices reduced reliability for stroke survivors (Price, Curless, & Rodgers, 1999). The instrument originally was tested on a sample of 55. A factor analysis yielded a two-factor solution with a 10-item continuity scale (Cronbach’s (alpha) = .869) and a 10-item discontinuity scale (Cronbach’s (alpha) = .874). This solution was congruent with the qualitative findings.
The findings for the CDSS were subsequently replicated with a sample of 50 (Secrest & Zeller, 2006). When the two samples were combined (N = 105), however, a subtle but real difference emerged. The discontinuity scale remained nearly unchanged, but the continuity scale then factored into two subscales: continuity/self and continuity/others. The sample characteristics between the first (n = 55) and the second (n = 50) were similar with respect to age, marital status, sex, stroke location, and education, but the second sample had a significantly lower functional status as measured by the Barthel index (M = 35.49, SD = 21.15) than the first (M = 50.80, SD = 25.96) (t = 4.682, p < .01). The lower functional ability may have related to the emergence of the two continuity factors because this was the only measured difference between the two samples.
QOL, a stated goal for rehabilitation nurses, is a broad and elusive concept. Its measurement has taken many forms and operational definitions. It is our belief that QOL can be defined only by the individual, an approach long supported in the literature (e.g., Gill & Feinstein, 1994). Continuity and discontinuity are viewed as an aspect of QOL and have been correlated with a single-item global measure of QOL (Secrest & Zeller, 2003, 2006).
Functional ability, an important marker after stroke, is one of the domains on many of the generic QOL instruments. Indeed, assisting patients to functionally negotiate their world is a central focus of rehabilitation for stroke survivors. However, studies dating back to the 1980s have demonstrated that functional ability alone is an incomplete proxy for QOL for stroke survivors (Ahlsio, Britton, Murray, & Theorell, 1984; DeHaan, Horn, Limburg, Van Der Meulen, & Bossuyt, 1993).
Depression is well known to follow stroke, with an incidence reported to range from 30% to 50% (AHA, 2006; Dromerick & Reding, 1994; Eastwood, Rifat, Nobbs, & Rudermann, 1989; Robinson, Murat, & Shimoda, 1999). Several tools are available to screen for depression, such as the Zung (1965) and Hamilton (1960) scales and the Center for Epidemiological Studies Depression Scale (CES-D) (Radloff, 1977), which may in part explain variations in incidence. Additionally, the samples of stroke survivors may differ. For example, patients admitted to inpatient rehabilitation facilities may be quite different from patients discharged home or discharged to a skilled nursing facility.
King (1996) found depression to be a modest predictor of QOL in a cross-sectional study of 85 long-term stroke survivors (R2 = .28). The CES-D was used to measure depression, and the Ferrans & Powers QOL (stroke version) instrument was used to measure QOL. Time may change how phenomena affect stroke survivors. In a longitudinal study of stroke survivors and QOL, depression, and self-efficacy, functional independence was not related to QOL at 1 month but was modestly related at 6 months (Robinson-Smith, Johnston, & Allen, 2000). The reverse was true for functional independence and depression (measured with the CES-D): There was no relationship between functional abilities and depression. The authors did not report the relationship between depression and QOL. The incidence of depression in this study was 25% at 1 month and 15% at 6 months.
The pattern of continuity and discontinuity over time in stroke survivors has not been studied, nor has its relationship with depression. In fact, questions on the discontinuity scale include items that may be consistent with depression (e.g., “I am sad,” “I am a burden to others.”). This scale has not been distinguished from measures of depression.
In previous studies, QOL has been shown to be directly related to continuity and inversely related to discontinuity, whereas functional abilities were related to continuity but not discontinuity (Secrest & Zeller, 2003, 2006). These relationships have not been studied over time. The purpose of the present study was to examine the concepts of continuity and discontinuity over time and to explore their relationships with depression, functional abilities, and global QOL.
A repeated-measures design was conducted, with data collection occurring during inpatient rehabilitation within the first month after stroke, 3 months after stroke, and 6 months after stroke. Inclusion criteria were age greater than 18 years, first stroke, able to participate in instrument completion, no significant comorbidities affecting QOL (e.g., heart failure, dialysis, AIDS, concomitant neurological disorders), and willingness to be recontacted at 3 and 6 months after stroke. Language impairment did not disqualify participants as long as they could understand the questions and either nod or point to the answers.
Data were collected from two inpatient freestanding rehabilitation hospitals, both with fewer than 100 beds, located in a medium-sized southeastern city. One hospital was not for profit and the other was for-profit, both with a variety of patients undergoing rehabilitation. Approval to conduct the study was granted from the university institutional review board, the research and ethics committee of one hospital, and the administrations of both hospitals. The informed consent included a clause permitting notification of the survivor’s healthcare provider during hospitalization and informing the primary support person or healthcare provider at visits 2 and 3 when the CES-D scores were above 16. Data were collected by trained undergraduate nursing students. Participants were given $10 grocery cards as a token of appreciation.
Demographic Data. This was a researcher- developed tool that included variables such as age, sex, educational level, and handedness. Financial difficulty was believed to be a mitigating factor for QOL. At each time period on the demographic page, participants were asked to rate their degree of financial difficulty as none, mild, moderate, or severe.
CES-D. The CES-D (Radloff, 1977) is a 20-item tool used to screen for, not diagnose, depression. Scores range from 0 to 60, with scores over 16 suggesting depression and scores over 25 correlated with major depression (Shinar, Gross, Price, Banko, Bolduc, & Robinson, 1986). The CES-D has been validated with stroke survivors (Shinar et al., 1986). In the present study, the Cronbach’s alpha was .884. The scores on the CES-D were divided into two groups—16 and below and higher than 16—because the literature generally supports 16 on the CES-D as suggesting depression. Those higher than 16 were further classified as between 17 and 25 and higher than 25.
Cantril Ladder. This was a researcher-drawn ladder with 10 rungs from 1 (poor QOL) to 10 (excellent QOL) and has been used in the studies to date with the CDSS. A single-item measure was chosen for several reasons, particularly respondent burden for this population. Single-item tools have long been established as valid and reliable measures of global concepts (Youngblut & Casper, 1993). More recently, DeSalvo (2006) validated two single-item measures of general health. The self-anchoring Cantril ladders were initially described by Cantril (1965) as a means for researchers to delve into participants’ reality rather than the researcher’s, which at the time was novel. McKeehan, Cowling, and Wykle (1986) later concluded that the assumptions underlying Cantril ladders “suggest a high degree of congruence between the ontological and epistemological perspectives . . . and some of the philosophical and theoretical perspectives espoused in nursing science” (p. 295). In a sample of stroke survivors, a 10-point vertical numeric rating scale was found to be more reliable than both vertical and horizontal visual analog scales (Price, Curless, & Rodgers, 1999). The Cantril ladder was selected as a single-item global measure that would visually enhance the numeric rating scale for stroke survivors.
Barthel Index. The Barthel index (Mahoney & Barthel, 1965) is a well-known measure of functional abilities with scores that range from 0 to 100; higher scores indicate higher levels of functioning. In this sample, Cronbach’s alpha was .886.
CDSS. CDSS scores range from 1 to 3. Initially, the 20-item, two-scaled instrument was administered to the first 17 participants (Secrest & Zeller, 2003). Subsequently, the full 45-item instrument was administered to the remaining participants in order to subject the tool to further factor analysis. Cronbach’s alpha for this sample for the 7-item continuity/self subscale was .724, for the 7-item continuity/others it was .802, and for the 10-item discontinuity subscale it was .836. Examples of items on the continuity/self subscale were “I have control of my life” and “I can do things when I want to.” Examples of continuity/others were “I feel accepted by others,” “I can communicate what I want,” and “I am an important part of a relationship.” Examples from the discontinuity scale included “I sometimes give up on something because it is too much trouble,” “I never know when I might laugh or cry,” and “It bothers me to ask for help for things I once did for myself.”
At time 1, 51 participants (26 men, 25 women) were entered, with a mean age of 69.51 (SD = 9.51) and mean education of 12.50 years (SD = 3.849). The majority had strokes in the right hemisphere (n = 24) and were right-handed (see Table 1). Participants completed various combinations of data collection times: times 1 and 2, times 1 and 3, and times 1, 2, and 3. The number of participants completing the study was 33. Attrition resulted from various causes: unable to contact (n = 8), rehospitalized or in a skilled facility (n = 4), scheduling difficulty (n = 6), and changed mind about participating (n = 3). One participant exhibited paranoid behaviors on the return visit, so the interview was aborted; the spouse and physician were aware of this behavior, so visit 3 was not scheduled. There was no significant difference in age, education, marital status, or financial difficulty between those who dropped out and those who completed time 3.
The scores on the CES-D were categorized as 16 and below, or above 16. Those above 16 were further classified as between 17 and 25 and higher than 25. At time 1, 51% scored 16 or below, with 49% scoring above (19.6% between 17 and 25; 29.44% higher than 25). At time 2, 74.2% scored 16 or below, with 25.8% above 16 (16.1% between 17 and 25 and 9.7% higher than 25). By time 3, the incidence of depression was 18% (12.1% between 17 and 25, 6.1% higher than 25), with 82% scoring 16 and below.
Table 2 summarizes participant variables at the three time periods (1 month, 3 months, and 6 months) after the stroke. Repeated-measures analysis of variance revealed no change in mean scores over time for discontinuity, continuity/self, continuity/others, or financial difficulty. There was a significant difference in QOL over time as measured by the Cantril ladder (F = 8.022, df = 1.430, p = .004), with the significant difference occurring between times 1 and 3 (t = 3.68, df = 28, p < .001). There was a significant difference in functional ability, as measured by the Barthel index, over time (F = 37.749, df = 1.219, p < .001), with significant differences occurring between times 1 and 2 (t = (-)6.456, df = 30, p < .001) and times 1 and 3 (t = (-)6.882, df = 32, p < .001). Depression, as measured by the CES-D, also changed over time (F = 21.722, df = 1.477, p < .001), with the difference occurring between times 1 and 2 (t = 5.470, df = 30, p < .001) and times 1 and 3 (t = 5.537, df = 32, p < .001).
A correlation matrix of the study variables is presented in Table 3. At time 1 there was a moderate correlation between QOL and continuity/self (r = .449, p < .01), continuity/other (r = .407, p < .01), discontinuity (r = (-).449, p < .01), functional abilities (r = .439, p < .01), and depression (r = (-).446, p < .01). At time 1, depression was also significantly related to continuity/self (r = (-).395, p < .05), continuity/others (r = (-).625, p < .01), and discontinuity (r = .630, p < 01). Discontinuity was not related to continuity/self or continuity/others at time 1 but was moderately related to both at time 3 (r = .391, p < .05; r = (-).444, p < .05).
In looking at relationships between time 1 variables and QOL at time 3, there was a significant inverse relationship with discontinuity (time 1) (r = (-).449, p < .05) and a significant direct relationship with functional ability (time 1) (r = .378, p < .05) but no relationship with depression (time 1).
Several factors limited this study, notably the sampling bias. All participants underwent inpatient rehabilitation. This factor alone implied that participants had some resources, both social and financial, to which other stroke survivors may not have access. The attrition rate, though expected, limited the sample size and may have introduced bias (i.e., there may have been something different about those who dropped out). For the measured variables, at least, this turned out not to be the case. The CES-D was a screening tool, not a diagnostic tool, for depression. Many of the patients were on antidepressants, either when data collection began or after data collection, but this information was not collected. The primary reason for administering the screening tool for depression was to distinguish between discontinuity and depression (i.e., to ensure that discontinuity was not, in fact, depression). To that end, the CES-D scores dropped significantly from time 1 to time 2, indicating lowered depression, whereas the discontinuity scale score did not change. This suggests a difference between the concepts of discontinuity and depression.
This study examined the relationships between continuity and discontinuity, functional ability, depression, and QOL at three time periods over 6 months in a group of stroke survivors who underwent rehabilitation. Gains in functional ability and decreases in depression were seen between the 1- and 3-month visits and between the 1- and 6-month visits for global QOL. There was no change in discontinuity, continuity/self, or continuity/others over time in the face of an improvement in depression, functional abilities, and overall QOL. This was consistent with the qualitative study in which participants who appeared to be the least disabled expressed themselves in the interviews as feeling quite disabled. They continued to feel a loss of wholeness (Secrest & Thomas, 1999).
The scores on continuity/other had limited variability, with means close to the maximum score of 3 and minimal variation (SD < 0.2), thus limiting its usefulness in this analysis. The high scores may be attributed to the fact that almost by definition, stroke survivors undergoing inpatient rehabilitation will have a support person to help with the transition from rehabilitation to home. Including stroke survivors who do not go to rehabilitation could yield different results.
Functional abilities are important markers in the stroke survivor’s recovery process, but they do not tell the whole story. Doolittle’s (1991) ethnography poignantly revealed more than a decade ago that the healthcare providers’ idea of recovery and the stroke survivor’s idea are not congruent. It may be that we simply lack the language or the measures to mark recovery that are meaningful to the stroke survivor. Whether the CDSS can be that measure is unknown. But it does tap into a concept heretofore not explored with stroke survivors, and this measure emerged from interviews with stroke survivors themselves, not from preexisting domains generated by the researcher.
A sense of continuity is a concept supported in the gerontology literature (Atchley, 1989; Becker, 1993). Atchley found aging to be a positive experience despite the negative changes. He attributed this positive adaptation to people continuing to learn and grow and having continuity of ideas. Erikson’s (1980) view of identity (self) was the comforting sense of continuity during life’s inevitable changes. For stroke survivors, that change comes abruptly, or as one stroke survivor said, “It was like lightning struck me down.” Continuity in the qualitative study on which the CDSS was drawn is very personal, addressing “what I can do” and “whom I can relate to.” Despite the stroke, the scores on both scales of the CDSS were high, indicating that participants felt continuous with self.
Consistent with the findings of others (Robinson-Smith et al., 2000), functional ability and depression were not related at any time period. However, functional ability was inversely related to discontinuity at time 3 (r = (-).456, p < .01) but not at any other time period. The less functional one was, the more discontinuous that person felt. Yet the relationship was modest and observed only at time 3 with these survivors. This is consistent with the previous studies. The original cross-sectional study consisted of participants with high functional abilities; in this study, there was no relationship to discontinuity. In the replication study, the participants had lower functional ability scores, and the relationship to discontinuity mimicked that of the present study.
QOL at time 3 was related to continuity/others (time 1), discontinuity (time 1), and functional ability (time 1). The sample size was too small for regression techniques, but it may be that some time 1 variables are predictors of long-term QOL. If future studies show that to be the case, continuity/other and discontinuity might prove to be areas nursing could influence positively. Providing early support and guidance to primary support people and to others important to the stroke survivor may foster the prestroke continuity with others. Friends and family members often feel awkward; early in-house support groups are one way in which nurses can facilitate this difficult transition.
In this study, the gains in functional ability, depression, and perceived QOL occurred between 1 and 3 months; no significant changes occurred between 3 and 6 months, seemingly a plateau period. From a research standpoint, data collection during this time appear to be redundant and expensive, but from a clinician’s standpoint this might be a time to implement strategies to improve the stroke survivor’s sense of continuity and to minimize a sense of discontinuity. Robinson-Smith (2002) found that self-care self-efficacy improved one’s sense of QOL; perhaps interventions to strengthen the survivor’s sense of continuity and to minimize discontinuity (control, independence, connection with others) would also improve self-efficacy.
The literature provides a wide range of reports on the incidence of post-stroke depression. Although CES-D is a screening tool, not a diagnostic tool, it is one used in much of the stroke literature. The incidence of depression dropped significantly at time 2, perhaps the result of these participants having been through rehabilitation with practitioners sensitive to the high incidence of depression among stroke survivors. Many of these participants were begun on antidepressants at the time of the first data collection. Whereas depression changed at time 2, discontinuity did not, distinguishing discontinuity from depression.
The city in which the data were gathered offers monthly stroke support groups. In fact, one such group is offered at the rehabilitation hospital from which many of the participants were discharged and continued with outpatient therapy. It was surprising to find that only two participants attended; data were not collected to ascertain reasons for nonattendance. This is an area for further exploration.
As Kierkevold (1997) pointed out, nurses often are seen as playing a background role in stroke rehabilitation. This became abundantly evident in a study defining QOL from the perspective of healthcare providers of patients with stroke. Of 2,793 questionnaires distributed, none were sent to nurses (McKevitt, Redfern, La-Placa, & Wolfe, 2003). Evidently patients and families do not see nurses’ role clearly either. In two qualitative studies of stroke survivors and their primary support people, nurses were not identified as part of their post-stroke experiences (Secrest, 2002; Secrest & Thomas, 1999). Perhaps if nurses practiced from the perspective of a nursing model, their integrative role with stroke survivors would become clearer. The CDSS could then capture the effects of that care.
King’s (1981, 1997) theory of goal attainment offers one nursing framework. In this theory both the nurse and patient have special knowledge: The patient has special knowledge of self, and the nurse has special knowledge about nursing. The patient and nurse come together to interact in a way in which perceptions of their special knowledge are shared. If they communicate successfully and there is perceptual congruence, a transaction occurs, goals are attained, and satisfaction and growth occur. From the qualitative studies reported in the literature, perceptions have not always been shared, or there has not been perceptual congruence; in other words, patients often felt they were not heard (Doolittle, 1991; Secrest, 2002). With King’s theory in mind, nurses can use the themes found in the qualitative study of stroke survivors (control, independence, and connections with others) (Secrest & Thomas, 1999) as an assessment approach. This would be the nurse’s special knowledge. The patient’s special knowledge would be his or her understanding of self, both prestroke and poststroke. The nurse could begin by being present to the patient and listening to what the patient wants to say, thereby glimpsing the patient’s experience. (When the interviews were conducted for the original qualitative study [Secrest & Thomas], many of the participants commented, often tearfully, that this was the first time they were asked about their experience.) The nurse can guide the patient in identifying the day-to-day activities that were particularly meaningful, and the nurse and patient (or the primary support person) together can set goals and the means to achieve those goals. Post-stroke realities present challenges for maintaining control, independence, and connections with others in everyday experiences, but when nurses anticipate these challenges and work with patients’ individual needs, creative solutions can emerge. Focusing on collaborative goal setting that is realistic and furthers the person’s sense of control and connection with others should enhance the sense of continuity and diminish the sense of discontinuity. The CDSS would be one tool to measure the efficacy of this theoretical approach to care.
Nurses provide much of the care for stroke survivors, yet their efforts often are overshadowed. Functional abilities, depression, and a general sense of QOL improved for stroke survivors, but a sense of continuity and discontinuity of self, a lack of wholeness, did not change over 6 months. This was consistent with former qualitative findings. Improving the stroke survivor’s sense of continuity is an area in which nursing has an integrative role to play. The CDSS, a three-scale instrument designed to measure continuity and discontinuity after stroke, could capture nursing contributions to stroke rehabilitation.
The authors gratefully acknowledge the support of a Sigma Theta Tau International-RNF grant and a Zeta Alpha Chapter of Sigma Theta Tau International grant for this study.
About the Authors
Janet A. Secrest, PhD RN, is an associate professor at the University of Tennessee at Chattanooga. Address correspondence to her at 615 McCallie Avenue, Chattanooga, TN 37403, or at email@example.com.
Richard Zeller, PhD, is a visiting professor at Kent State College of Nursing, Kent State University, Kent, OH.
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