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Uncertainty of Acute Stroke Patients: A Cross-sectional Descriptive and Correlational Study.

ABSTRACT

Background: Uncertainty is a chronic and pervasive source of psychological distress for patients and plays an important role in the rehabilitation of stroke survivors. Little is known about the level and correlates of uncertainty among patients in the acute phase of stroke. Purpose: The purposes of this study were to describe the uncertainty of patients in the acute phase of stroke and to explore characteristics of patients associated with that uncertainty. Methods: A cross-sectional descriptive and correlational study was conducted with a convenience sample of 451 consecutive hospitalized acute stroke patients recruited from the neurology department of 2 general hospitals of China. Uncertainty was measured using Chinese versions of Mishel Uncertainty in Illness Scale for Adults on the fourth day of patients' admission. Results: The patients had moderately high Mishel Uncertainty in Illness Scale for Adults scores (mean [SD], 74.37 [9.22]) in the acute phase of stroke. A total of 95.2% and 2.9% of patients were in moderate and high levels of uncertainty, respectively. The mean (SD) score of ambiguity (3.05 [0.39]) was higher than that of complexity (2.88 [0.52]). Each of the following characteristics was independently associated with greater uncertainty: functional status (P = .000), suffering from other chronic diseases (P = .000), time since the first-ever stroke (P = .000), self-evaluated economic pressure (P = .000), family monthly income (P= .001), educational level (P = .006), and self-evaluated severity of disease (P = .000). Conclusion: Patients experienced persistently, moderately high uncertainty in the acute phase of stroke. Ameliorating uncertainty should be an integral part of the rehabilitation program. Better understanding of uncertainty and its associated characteristics may help nurses identify patients at the highest risk who may benefit from targeted interventions.

Keywords: acute stroke, correlation factor, cross-sectional study, population distribution, uncertainty

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Throughout the world, the incidence of first-ever stroke is approximately 200 per 100 000 people per year. (1) Stroke is a major life-threatening cerebrovascular disease event. Globally, stroke is the second most common cause of death (2) and the third most common cause of disability-adjusted life-years (3) in 2010. Stroke is characterized by the World Health Organization as "rapidly developed clinical signs of focal (or global) disturbance of cerebral function, lasting more than 24 hours or leading to death." (4) During the acute phase of stroke, up to one-third of stroke patients deteriorate neurologically in the first few days, and approximately half of those who die or are left with serious long-term disability have undergone stroke progression in the first 72 hours. (5) This results in an increasing demand being placed on acute stroke services. Being a chronic and pervasive source of psychological distress for patients, uncertainty plays an important role in the rehabilitation of stroke survivors.

Uncertainty is defined as "the inability to determine the meaning of illness-related events and occurs in situations where the decision maker is unable to assign definite values to objects and events and/or is unable to accurately predict outcomes because sufficient cues are lacking." (6) Studies show that high uncertainty is associated with patients' lack of information or knowledge to understand their condition or symptoms, outcomes unpredictability, and resources (eg, social support, medical care, and education) insufficience to provide patients with a sense of control over their illness. (7,8) The high incidence and severity of stroke outcomes are devastating. Living with uncertainty during the diagnosis, treatment, and rehabilitation period of stroke may present a lifelong challenge because of the chronic nature of the disease. (8) Illness uncertainty can result in poor psychosocial adjustment. (9,10) Uncertainty and negative emotions not only affect the disease's progression and prognosis but also influence patients' quality of life.

Over the last decade, there has been an increase in research with stroke survivors. Much of the earlier research either focuses on poststroke survivors and care partners' psychological health or stresses the need for in-depth studies over time. (11-13) Studies on the uncertainty of patients in the acute phase of stroke are inadequate. Acute stroke is a medical emergency. It can cause both physical and mental problems, which may have a tremendous impact on the patient's life. Thus, the purposes of the current study were to describe the uncertainty of patients in the acute phase of stroke and to explore characteristics of patients associated with that uncertainty.

Methods

We implemented a cross-sectional descriptive and correlational study using a convenience sample of consecutive inpatients diagnosed with acute stroke who were admitted to the neurology department of 2 general hospitals in Xi'an city of China from February 1 to December 31, 2015. Acute stoke was defined as either of 2 stroke subtypes--hemorrhagic or ischemic stroke--as the primary diagnosis. (14)

The sample size was estimated according to the number of items of the questionnaire. Evidence suggests that the estimated sample was 5 to 10 times the number of items of the questionnaire. (15) There were 65 items in the questionnaire. If 5 times the number of items of the questionnaire was used, the estimated sample would be 350 participants. An additional 25% was added to this sample estimate in anticipation that the final sample would include patients who would not consent to participate. The sample size should be no less than 406. The sample size of N = 451 was chosen for this study.

Patients' inclusion criteria were as follows: were diagnosed with acute stroke and confirmed the disease by computed tomography or magnetic resonance imaging examination, aged 18 years or older, and were willing to participate in the study.

Exclusion criteria were as follows: were unconscious caused by stroke, brain injury, brain tumor, and/or dementia; experienced a severe illness that obstructs communication; had any obvious cognitive disabilities; and/or currently suffering from deafness, aphasia, or other language barriers.

Procedures

The survey was conducted on the fourth day of patients' admission. Data were collected using self-reported questionnaires under the instruction of trained investigators. Oral and written information about the purpose and importance of the study was given to the patients to acquire informed consent before the survey. A written informed consent was obtained from each participant. The study was reviewed and approved by the institutional review board of the Fourth Military Medical University.

The questionnaire used in the study included the Chinese version of Mishel Uncertainty in Illness Scale for Adults (MUIS-A), Barthel Index (BI), and Personal Data Form. The Chinese version of MUISA was used to measure patients' uncertainty, which was developed from the MUIS-A by Xu and Huangm (16) in 1996. The Chinese version of MUIS-A contains 25 items. Each item is scored on a scale of 1 (strongly disagree) to 5 (strongly agree). Total sum scores range from 25 to 125; high scores indicate greater uncertainty. According to the total sum score, patients' uncertainty were divided into 3 levels. The score of low, medium, and high levels of uncertainty is 25 to 58.3, 58.4 to 91.7, and 91.8 to 125, respectively. Internal consistency for the total scale is .89 (Cronbach's [alpha]), and content validity is 0.87; (16) in our study, Cronbach's a was .80.

The patient's ability to perform activities of daily living (ADLs) was measured using BI in terms of 10 basic ADLs. (14) The scale has 10 items, each scored from 0 to 15. Total scores range from 0 (total dependence) to 100 (total independence). A higher BI indicates a higher level of ADL. For a better interpretation, its global results have been grouped into 4 categories based on BI scores: severe disability (BI [less than or equal to] 40), moderate disability (BI, 41-60), mild disability (BI, 61-99), and no disability (BI, 100). (17) Barthel Index is widely used and has a good reliability with a Cronbach's [alpha] of .96.

A personal data form was used to measure patients' sociodemographic and clinical characteristics, which was developed by the researcher. The form includes 30 items that consisted of 2 parts: patient's sociodemographic and clinical characteristics and caregiver's information. The items include patient's age, sex, marital status, level of education, category of medical expenses, self-evaluated economic pressure, family monthly income, time and course of stroke, medication history, and type of stroke.

Data Analysis

Epidata 3.0 was used to input data, and SPSS 17.0 software was used to generate descriptive and inferential statistics. Means, standard deviations, and frequencies were used to describe the sample variables. Comparison of MUIS-A scores for sociodemographic and clinical characteristics was tested by Student t test or 1-way analysis of variance. The independent contributors of uncertainty were examined by stepwise multiple linear regression analyses. The total sum score of uncertainty was the dependent variable, whereas sociodemographic and clinical characteristics were entered as the independent variables. All tests conducted were 2-sided, at a significance level of .05.

Results

The original sample contained 451 stroke patients. Because of refusals and severe disease situations, 432 patients were surveyed. After removing 14 patients whose questionnaires were not completed according to the actual facts, data of 414 patients remained with an effective rate of 95.8% (414/432).

Of 414 participants, there were 249 men and 165 women. The mean (SD) age was 62.33 (10.18) years (range, 30-79 years). More than half of the patients (53.1%) had recurrent stroke. Nearly half of them (48.8%) had 1 to 5 years of history of stroke. Ischemic stroke accounted for 84.1% of the stroke lesion types. The sociodemographic and clinical characteristics of the participants are presented in a supplemental table (Supplemental Digital Content 1, available at http://links.lww.com/JNN/A124).

The mean (SD) score of BI was 75.01 (20.21) (range, 30-100). A total of 345 patients (83.3%) experienced various degrees of disability of ADL. Of the participants, 59.4%, 14.5%, and 9.4% were mildly, moderately, and severely disabled, respectively.

The percentage of patients in low, medium, and high levels of uncertainty was 1.9%, 95.2%, and 2.9%, respectively. The mean (SD) total sum score of uncertainty was 74.37 (9.22) (range, 45-118). The mean (SD) score of ambiguity (3.05 [0.39]) was higher than that of complexity (2.88 [0.52]). Of 25 items, the highest rated item was "It is not clear what is going to happen to me." The top 5 items of uncertainty in illness of patients are presented in a supplemental table (Supplemental Digital Content 2, available at http://links.lww.com/JNN/A125).

Table 1 illustrates scores of uncertainty by different sociodemographic and clinical characteristic groups. There was a statistically significant difference in scores of uncertainty based on age, educational level, occupation, family monthly income, medical expenses, self-evaluated economic pressure, place of residence, self-evaluated severity of disease, time since the first stroke diagnosis, suffering from other chronic diseases, types of stroke, complications, and functional status (P < .05). To avoid the interaction of the previously mentioned factors, stepwise multiple regression analysis was used to examine the independent contributors of uncertainty. The following characteristics were found to be independently associated with patients' greater uncertainty in the acute phase of stroke: functional status, suffering from other chronic diseases, time since the first stroke diagnosis, self-evaluated economic pressure, family monthly income, educational level, and self-evaluated severity of disease (Table 2).

Discussion

In this study, 98.1% of acute stroke patients were found to experience moderate and high uncertainty related to stroke, which was similar to Hu's (18) research. Acute stroke is a heterogeneous disease with respect to prognosis. The ultimate outcome in patients depends on many factors. Most stroke survivors experience physical, emotional, or social behavior disability. The high incidence of poststroke disability and mortality might increase patients' uncertainty. Uncertainty is often accompanied with negative mood states, which may greatly influence patients' work and daily life. In the current study, ambiguity related to patients' understanding of their illness was found to greatly impact their uncertainty. The highest scored item of uncertainty among acute stroke patients was "It is not clear what is going to happen to me." The results indicated that uncertainty of acute stroke patients mostly came from their incomprehension of the occurrence, development, and prognosis of the disease. The uncertainty in the acute phase of stroke might lead to a feed-forward cycle, where the uncertainty would cause patients to worry more over time and therefore increase their uncertainty, possibly influencing patients' psychological adjustment, compliance with treatment, and perspective in life.

The current study found that uncertainty of acute stroke patients was correlated with their sociodemographic and clinical characteristics. A lesser ability in ADL performances was found to correlate to more severe uncertainty among patients in the acute phase of stroke. Stroke is the most common cause of severe adult disability, and it has become the leading cause of dependence in ADL worldwide in recent years. In China, three-quarters of the stroke survivors were reported to have stroke-induced cognitive or physical function impairments. (19) In the current study, 83.3% of patients had various degrees of dependency in the acute phase of stroke. The disability in ADL performances could increase acute stroke patients' uncertainty. It appears that motivating to perform ADL might reduce uncertainty. The finding suggests that those patients with dependency in ADL performances were the focus of care in the acute phase of stroke.

Clinical characteristics such as suffering from other chronic diseases, the time since the first stroke diagnosis, and self-evaluated severity of disease were found to be strongly correlated to uncertainty among acute stroke patients in this study. The finding was in agreement with Hong's (20) study. With the short disease duration and serious state of stroke, and suffering from several chronic diseases at the same time, stroke patients in the acute phase might have high uncertainty. It is known that acute stroke patients have a high risk for physiological changes that can result in adverse patient outcomes. (21) The high uncertainty might be explained by insufficient knowledge and overestimation of the adverse effects of diseases. When patients were uncertain about the outcome of stroke, this would reduce their ability to cope. Early education from health professionals might help patients enhance disease cognition in the acute phase of stroke.

In addition, results showed that there was a significant relationship between economic pressure and uncertainty after stroke. A lesser family monthly income was correlated to high uncertainty among acute stroke patients. This finding was in accordance with previous results. (22) Stroke has had a significant impact on healthcare expenditure. In 2004, the average fee for stroke admission was 6356 RMB (USD 1000.94), which was 2 times the annual income of rural residents. (23) Stroke could also impose a heavy economic burden on patients and their families. The patients who had good economic conditions had more medical resources and a better capacity to cope with stroke and disability compared with their counterparts. (24) Those patients with economic burden might be under heavy pressure from psychology and physiology. They would lose confidence in treatment and rehabilitation. Accordingly, uncertainty might be increased.

In the current study, the uncertainty of acute stroke patients had a tendency to reduce with the level of educational background. This result agrees with Hong's (20) finding.

A possible reason is that patients with high-level education had more resources to receive the knowledge related to stroke. Meanwhile, they had a better capacity to understand the information about stroke treatment and rehabilitation compared with patients with low-level education. The finding further emphasizes the necessity of improving comprehensive stroke education among acute stroke patients, especially those patients with lower-level education.

The study has some clinical implications. Compared with most previous studies on uncertainty of poststroke survivors and care partners, this study contributes to our understanding of uncertainty among patients in the acute phase of stroke and provides a framework for early interventions that will decrease certain elements of uncertainty such as insufficient information and disability in ADL performances that contribute to uncertainty. Before the patients move to the recovery stage, timely recognition of and attention to uncertainty and its associated factors, as well as the development of a targeted intervention, in the acute phase of stroke might help patients decrease uncertainty.

Some limitations should be considered in deriving implications of our findings. The sample of acute stroke patients was recruited from 2 general hospitals in 1 city, which may affect the generalizability of the study findings to other cities in China and internationally. In addition, the design of this study was cross-sectional. The significant correlations found do not suggest direction causation. Further longitudinal research is recommended to investigate the detailed correlation between uncertainty and patients' sociodemographic and clinical characteristics.

In conclusion, this study contributes to our understanding of uncertainty in the acute phase of stroke. Uncertainty was experienced frequently in acute stroke patients, especially patients who are in poorer functional status, suffer from other chronic diseases, and have a longer duration of stroke, heavier economic pressure, and lower educational level. Timely recognition of and attention to uncertainly and its associated factors, as well as the development of a targeted intervention for uncertainty, may help acute stroke patients better improve survival and reduce disability.

Acknowledgments

We thank the staff of the Epidemiology and Statistics Department of the Fourth Military Medical University for their guidance in sampling and data analysis. We also gratefully acknowledge all of the patients in 2 general hospitals who willingly participated in the survey.

References

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Questions or comments about this article maybe directed to Chunping Ni, PhD, atpingchunni@163.com. She is Professor of Nursing, School of Nursing, the Fourth Military Medical University, Xi'an, P.R. China.

Jing Peng, MSN RN, is Assistant of Nursing, Department of Nursing, Northwest University for Nationalities, Lanzhou, P.R. China.

Yuanyuan Wei, BSN RN, is Nursing Graduate Student, School of Nursing, the Fourth Military Medical University, Xi'an, P.R. China.

Yan Hua, MSN RN, is Lecturer of Nursing, School of Nursing, the Fourth Military Medical University, Xi'an, P.R. China.

Xiaoran Ren, MSN RN, is Nurse, Department of Nursing, Traditional Chinese Medicine Hospital of Shaanxi Province, Xi'an, P.R. China.

Xiangni Su, MSN RN, is Lecturer of Nursing, School of Nursing, the Fourth Military Medical University, Xi'an, P.R. China.

Ruijie Shi, MSN RN, is Lecturer of Nursing, School of Nursing, the Fourth Military Medical University, Xi'an, P.R. China.C.N. and J.P. were co-first authors. They contributed equally to this work.

This study was supported by the Department of Science and Technology of Shaanxi Province of China (Grant 2015KW-041).

The authors declare no conflicts of interest.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Web site (www. jnnonline.com).

DOI: 10.1097/JNN.0000000000000373
TABLE 1. Population Distribution Characteristics of Uncertainty
(N = 414)

Sociodemographic and Clinical        Score of MUIS       F/t      P
Characteristics

Age, y                                                  3.034    .049
 [less than or equal to] 44       78.95 [+ or -] 12.17
 45-59                            74.75 [+ or -] 11.11
 [greater than or equal to] 60    73.85 [+ or -] 7.82
Educational level                                       9.482    .000
 Elementary school                74.74 [+ or -] 8.64
 Junior high school               75.87 [+ or -] 9.56
 Senior high school               71.28 [+ or -] 7.73
 College or higher                68.43 [+ or -] 6.71
Family monthly income, Yuan                             66.176   .000
 0-1000                           89.35 [+ or -] 10.08
 1001-2000                        74.24 [+ or -] 7.56
 2001-3000                        72.88 [+ or -] 6.95
 [greater than or equal to]       70.47 [+ or -] 7.53
 3001
Medical expenses                                        -3.420   .001
 Medical insurance                73.54 [+ or -] 8.56
 At one's own expense             76.71 [+ or -] 10.55
Self-evaluated economic                                 9.210    .000
pressure
 Low                              72.72 [+ or -] 9.16
 Moderate                         73.14 [+ or -] 8.74
 High                             77.18 [+ or -] 9.55
Self-evaluated severity                                 14.147   .000
 of disease
 Mild                             68.50 [+ or -] 7.51
 Moderate                         71.39 [+ or -] 11.02
 Severe                           76.13 [+ or -] 7.55
Stroke frequency                                        -0.841   .401
 The first stroke diagnosis       74.61 [+ or -] 10.29
 Twice or more stroke diagnoses   74.10 [+ or -] 7.84
Time since the first stroke                             6.618    .000
 diagnosis, y
<1                                75.15 [+ or -] 8.78
1-5                               74.63 [+ or -] 9.12
6-9                               69.82 [+ or -] 11.32
[greater than or equal to] 10     66.00 [+ or -] 9.38
Suffering from other                                    -4.653   .000
 chronic diseases
 Yes                              78.53 [+ or -] 12.07
 No                               72.85 [+ or -] 7.38
Functional status                                       33.560   .000
 Independence                     69.61 [+ or -] 9.36
 Mild disability                  72.93 [+ or -] 8.28
 Moderate disability              79.03 [+ or -] 7.71
 Severe disability                84.15 [+ or -] 7.08

Abbreviation: MUIS, Mishel Uncertainty in Illness Scale.

TABLE 2. Factors Related to Uncertainty of Patients in the Acute Phase
of Stroke

Variable                                B      [beta]     t       P

Functional status                     -4.755   -0.420   -9.342   .000
Suffering from other diseases         5.620    0.270    6.549    .000
Time since the first stroke           -1.591   -0.156   -3.832   .000
 diagnosis, y
Self-evaluated economic pressure      2.576    0.165    3.670    .000
Family monthly income, Yuan           0.001    0.155    3.245    .001
Educational level                     -1.380   -0.117   -2.770   .006
Self-evaluated severity of disease    2.088    0.114    2.599    .010
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Author:Ni, Chunping; Peng, Jing; Wei, Yuanyuan; Hua, Yan; Ren, Xiaoran; Su, Xiangni; Shi, Ruijie
Publication:Journal of Neuroscience Nursing
Date:Aug 1, 2018
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