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ORIGINAL ARTICLE
Year : 2022  |  Volume : 12  |  Issue : 4  |  Page : 253-262

Impact of Nurse-Led Stroke Education Program (NSEP) on ADL and SS-QOL among Patients with Stroke and Burden among Caregivers


SRM College of Nursing, SRM Institute of Science and Technology, Kattankulathur, Tamil Nadu, India

Date of Submission09-Jul-2022
Date of Decision01-Aug-2022
Date of Acceptance04-Aug-2022
Date of Web Publication30-Nov-2022

Correspondence Address:
PhD Bamini Devi
Professor, SRM College of Nursing, SRM Institute of Science and Technology, SRM Nagar, Kattankulathur, Chengalpattu District, Tamil Nadu 603203
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijnpnd.ijnpnd_47_22

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   Abstract 


Aim: To determine the effectiveness of Nurse-Led Stroke Education Program (NSEP) on Activities of Daily Living (ADL) and Stroke-Specific Quality of Life (SS-QOL) among patients with stroke and elicit burden among caregivers. Method: A quantitative research method was adopted. Stroke victims and their caregivers who fulfill eligibility criteria were chosen. The sample size was 170 dyads, 85 dyads in the study and 85 dyads in the control groups were recruited by lottery method. NSEP was implemented in the study group dyads. The posttest assessments were taken on days 30, 90, and 180 for both groups. Results: The mean scores of ADL in the study and control group during posttest-I, II, and III were significant at P < 0.05. The mean scores of PCS during posttest-I, II, and III showed significance at P < 0.05. MCS mean score during posttest-I, II, and III was significant at P < 0.05. Overall mean scores of SS-QOL in the study group were found to be higher than that in the control group during posttest-I, II, and III at P < 0.01 between groups. The burden mean scores were higher in the control group caregiver than in the study group caregiver during the posttest-I and II at P < 0.01. Conclusion: Findings concluded that the combination of interventions like structured teaching, an information booklet on “Life after stroke,” and telephonic reminder and reinforcement has a positive impact on ADL and SS-QOL of patients with stroke and minimized caregiver burden.

Keywords: ADL, burden, caregivers, quality of life, stroke rehabilitation, stroke


How to cite this article:
Devi B. Impact of Nurse-Led Stroke Education Program (NSEP) on ADL and SS-QOL among Patients with Stroke and Burden among Caregivers. Int J Nutr Pharmacol Neurol Dis 2022;12:253-62

How to cite this URL:
Devi B. Impact of Nurse-Led Stroke Education Program (NSEP) on ADL and SS-QOL among Patients with Stroke and Burden among Caregivers. Int J Nutr Pharmacol Neurol Dis [serial online] 2022 [cited 2023 Feb 6];12:253-62. Available from: https://www.ijnpnd.com/text.asp?2022/12/4/253/362415




   Introduction Top


In recent years, there has been an increase in economic and demographic development in developing countries resulting in a shift from disease caused by poverty toward chronic noncommunicable lifestyle-related diseases. One such disease is stroke. Stroke is also referred to as cerebrovascular accident (CVA) or cerebrovascular disease and it needs a medical emergency requiring immediate treatment. Prompt treatment improves the chances of survival and increases the degree of recovery that may be expected. Stroke stands globally as the second most prevalent etiology of death and is rated among the top causes of morbidity in developed and developing countries.[1]

Globally, stroke remained the second leading cause of death and the third leading cause of disability in 2019. In 2019, there were 12.2 million incident cases of stroke, 101 million prevalent cases of stroke, 143 million (133–153) disability adjusted life years (DALYs) due to stroke, and 6.55 million deaths from stroke. Ischemic stroke constituted 62.4% of all incident strokes in 2019, while intracerebral hemorrhage constituted 27.9% and subarachnoid hemorrhage constituted 9.7%. In 2019, the five leading risk factors for stroke were high systolic blood pressure, high body mass index, high fasting plasma glucose, ambient particulate matter pollution, and smoking.[2]

In 2017[3], systematic review stated that, the cumulative incidence of stroke was estimated as 105 to 152/100,000 persons per year, the crude prevalence of stroke ranged from 44.29 to 559/100,000 persons, and 1-month case fatality rates from 18% to 42% in different parts of the country. Due to the disabling nature of the condition and available evidence on the silent stroke epidemic in India, the rehabilitation needs of stroke survivors are also expected to be high. Thus, future investment in the epidemiological study of stroke in India would lead to the development of better preventive measures against stroke and related mortality. It can also enhance organizing cost-effective stroke care services and better rehabilitation measures to address the unmet needs of stroke survivors and caregivers.[3]

Lo et al.[4] conducted a study on the effectiveness of nurse-led self-efficacy and self-management program among poststroke patients. The study revealed improvement in self-efficacy and self-management among stroke patients at 8 weeks.

The research study investigated on nurse-led tailored stroke self-management program among poststroke patients and the results found that there was a greater change in self-efficacy and quality of life (QOL) within 6 weeks period and less decline in QOL in 3 months period.[5]

The objectives of this study were to find out the impact of Nurse-Led Stroke Education Program (NSEP) on QOL in the following aspects: Activities of Daily Living (ADL), generic, and Stroke-Specific Quality of Life (SS-QOL) among patients with stroke. Elicit the effectiveness of NSEP on burden among caregivers of patients with stroke. Associate the selected demographic and clinical variables with ADL and SS-QOL among patients with stroke.

Many people think that they would work until they retire, but sometimes it does not work out that way. CVA is one of the illnesses that can strike with little warning and can have a dramatic effect on one’s life.

Well-organized stroke services are lacking in the government sector of India, and most stroke centers are situated in urban settings in India, while 70% of the population lives in rural areas. As such, modern acute stroke care with optimal use of intensive care units, neuroimaging, thrombolytic evaluation, monitoring, and intensive rehabilitation appears beyond the reach of most patients.

Irrespective of recent advances in stroke therapy, the majority of stroke patients do not seek immediate medical attention in acute stroke. Knowledge about stroke warning symptoms and risk factors is essential for patients and caregivers. Hence, there is an urgent need to educate the public about stroke symptoms diagnosis and to take an early decision for immediate treatment to curb the growing stroke problem in India.

A study was conducted on nurse-led Telephone Assessment and Skill-Building Kit (TASK) for caregivers to build skills on their need basis.[6] Caregivers had fewer depressive symptoms and greater improvement in QOL after implementing the TASK.

A study determined the impact of a nurse-led support and education program for spouses of stroke patients.[7] The study findings revealed that the intervention group had a significant decrease in negative well-being and increased QOL over a period of time, whereas the control group showed a significant decrease in negative and general well-being. The results showed that the support and educational program might have a positive effect on the spouse’s well-being.

Nurses specializing in neurorehabilitation train stroke patients to relearn how to carry out the basic activities of daily living. They also educate survivors about routine health care, such as how to follow a medication schedule, how to care for the skin, how to move out of a bed and into a wheelchair, and special needs for people with diabetes and hypertension. Rehabilitation nurses also work with stroke patients to reduce risk factors and provide training for caregivers. The challenge for the future is to develop new approaches that will enhance stroke outcomes.

In light of these findings, the investigator felt a strong need to undertake the present study on the impact of the NSEP on ADL, SS-QOL, and generic QOL among patients with stroke and the burden among caregivers.


   Materials and methods Top


A quantitative research method was used by adopting a randomized controlled trial [Figure 1].
Figure 1 Research design of the study.

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Material

NSEP was provided by the investigator to the patients with stroke and their caregivers in the study group apart from routine care. Laptop-assisted teaching by lecture method was used to teach the dyads (patient + caregiver) on a one-to-one basis. The teaching module prepared by the investigator and validated by the experts was used to teach the study participants. It consisted of a 40-minute inpatient teaching session each day for 3 consecutive days for the patients with stroke and their caregivers which included:

Day 1: Lecture on structure and function of the brain and general information on stroke and its management. The content included: stroke definition, cause, risk factors, warning signs, investigations, adherence to medication, and collaborative management of stroke.

Day 2: Lecture on managing swallowing problems, bowel and bladder problems, memory problems, speech and vision problems, prevention of complications such as pressure sore, injury to affected limbs, fall prevention, swelling of affected limbs, poststroke depression, and tips for caregivers which was tailored to the needs of the individual patients.

Day 3: Lecture cum demonstration on assisting with activities of daily living (bathing, toileting, grooming, and feeding), the performance of a range of joint movement exercises on the patient that included the possible movement of the shoulder, wrist, elbow, hip, knee, and ankle joint followed by return demonstration a by the caregiver on the patient was carried out which improved the confidence of caregiver to work out with joints.

A booklet on “Life after stroke” was provided for the study group participants on the day of discharge and it contained information on components of the NSEP. A telephone call was made once every fortnight after the discharge from the hospital till day 180, for regular follow-up and adherence to medication.

Reinforcement was carried out as a part of NSEP to the dyads following posttest-I and II by the investigator which was tailored to the need of the individual patients.

Control group

The patients and their caregivers in the control group received routine care given by the doctors, nurses, and other paramedical personnel in the health care facility. Immediately after posttest III, the investigator offered the same booklet on “Life after stroke” to the control group dyads.

The study was conducted after the approval of the Institutional Ethics Committee. Written consent was obtained from the patient and the caregivers. Sampling criteria for the patient include, patients between the ages of 30 and 60 years, both male and female, modified Rankin grade of 1 to 4, conscious, alert and oriented, and able to speak either Tamil and/or English. Patients who were not willing to participate, had problems with communication other than stuttering, and were diagnosed to have complete blindness were excluded from the study. Inclusion criteria for caregivers were: caregivers who were between the ages of 20 and 65 years (both male and female) and were able to meet their ADL on their own and were willing to provide care to the patient after the discharge till 180 days and above. Caregivers who were not willing to participate as a dyad were excluded from the study.

A simple random sampling by using a lottery method was adopted to assign the groups. Samples were randomly assigned in the presence of the caregivers to the study group or the control group. An equal number of lots (85 chits for the study group and 85 chits for the control group) were made and kept in a box. Patients and their caregivers who fulfilled the inclusion criteria were allowed to pick their lots from the box. Based on the lot, 85 patients and their caregivers were assigned to the study group and 85 patients and their caregivers were assigned to the control group based on inclusion criteria [Table 1].
Table 1 Sample size at various duration of the study

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The pretest was conducted in neurology wards and the posttest was conducted at neurology Out Patient Department (OPD). The total number of samples was 170 dyads where 85 dyads in each group were recruited as samples by lottery method. Informed consent was obtained from the dyads of both groups. The sample size was 170 dyads (170 patients and 170 caregivers) which were equally divided into the study group (n1 = 85 patients and n2 = 85 caregivers) and the control group (n1 = 85 patients and n2 = 85 caregivers). Using power analysis, the sample size was estimated as 75 for each group (total = 150), to achieve 80% power at a 5% level of significance, considering the chance of attrition, an increase of 10% was done and the obtained value was rounded to 170 [Figure 2].
Figure 2 Data collection procedure.

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Demographic variables, clinical variables of the patient, and background variables of the caregivers were captured. The Barthel Index was used to assess the ADL. A total of 10 activities were scored, ranging from 0 (totally dependent) to 100 (completely independent), r = 0.89. SF-36 V2 was used to assess the generic QOL of the patients. SF-36 V2 (WARE JE, New England Medical Center, 1993[8]) scores were converted on a scale of 0 to 100; a higher score indicated a better QOL and a lower score indicated a poor QOL (r = 0.90). The SS-QOL is a patient-centered outcome measure intended to provide an assessment of the health-related QOL specific to patients with stroke. Higher scores indicate better functioning (r = 0.8). The Burden Assessment Scale was used to calculate the burden experienced by caregivers while caring for a loved one. It was developed by Rhonda J.V. Montgomery[9] on a five-point Likert scale and it has 22 items related to feelings regarding caring for a relative, sense of responsibility, feelings due to impairment, and relationship with family and friends. The minimum score was 0 and the maximum score was 88.

The statistical package for the social sciences (SPSS) version 17.0 (SPSS Inc. Released 2008. SPSS Statistics for Windows, Version 17.0. Chicago) was used to analyze the data. Descriptive statistics were frequency and percentage; mean and standard deviation were used to describe the study variables that included background variables (demographic, clinical, and personal variables), ADL, QOL, and burden.

The presence of homogeneity between the study and control groups concerning their background variables was determined by a nonparametric chi-square test. The impact of NSEP on knowledge, ADL, QOL, and the burden was calculated by inferential methods that included paired t/Wilcoxon signed-rank, independent t/Mann–Whitney U, and repeated measures Analysis of Variance (ANOVA) tests. Paired t/Wilcoxon signed-rank test was used to compare the pretest data and posttest data within the groups. Independent t/Mann–Whitney U test was used to compare the data between the groups and a repeated measure ANOVA test was carried out to study the impact of NSEP on the dependent variables over a period of time by comparing the data between the groups.


   Results Top


The finding of the study tabulated in [Table 2],[Table 3],[Table 4],[Table 5],[Table 6],[Table 7],[Table 8],[Table 9],[Table 10] and discussed as per the study objectives [[Table 2],[Table 3],[Table 4],[Table 5],[Table 6],[Table 7],[Table 8],[Table 9],[Table 10]].
Table 2 Frequency and percentage distribution of the demographic variables among the study and control group patients (n1 = 170)

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Table 3 Frequency and percentage distribution of stroke risk factors among the study and control group patients (n1 = 170)

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Table 4 Frequency and percentage distribution of clinical variables among the study and control group patients (n1 = 170)

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Table 5 Repeated measures on values of ADL over a period of time between the study and control group patients (n1 = 170)

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Table 6 Repeated measures on values of a physical component summary score at different periods between the study and control group patients (n1 = 170)

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Table 7 Repeated measures on values of a mental component summary score at different periods between the study and control group patients (n1 = 170)

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Table 8 Comparison of overall SS-QOL score between the study and control group patients (n1 = 170)

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Table 9 Frequency and percentage distribution of background variables of the study and control group caregivers (n2 = 170)

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Table 10 Repeated measures on values of burden at different periods among the study and control group caregivers (n2 = 170)

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   Discussion Top


Results found that 32 (37.6%) participants were between the ages of 41 and 50 years in the study group and 31 (36.5%) of them were between the ages of 41 and 50 years in the control group. About 65 (76.5%) participants were male in the study group and 54 (63.5%) of them were male in the control group. Regarding educational status, 23 (27.1%) participants in the study group and 21 (24.7%) participants in the control group had a collegiate level of education.

Concerning the stroke risk factors, 73 (85.9%) subjects in the study and 58 (68.2%) of them in the control group suffered from hypertension. About 39 (45.9%) and 48 (56.5%) subjects had a history of diabetes in the study and control group, respectively. About 27 (31.8%) in the study and 23 (27.1%) subjects in the control group were ex-smokers. While, 52 (61.2%) and 34 (40%) subjects had a family history of stroke in the study and control group patients, respectively.

In relation to the clinical variables, 59 (69.4%) subjects had ischemic stroke and 26 (30.6%) of them suffered from a hemorrhagic stroke in the study group, whereas 61 (71.8%) subjects suffered from ischemic stroke and 24 (28.2%) of them suffered from a hemorrhagic stroke in the control group. Regarding neurological deficits, the majority of them had weakness on one side of the body in both groups.

The independent t test results revealed the mean scores of ADL in the study group (79.06, 81.29, and 81.76) and the control group (79.06, 81.35, and 81.63) during posttest-I, II, and III were statistically significant at P < 0.05 level. The comparison of the mean score of ADL in the study group during pretest and posttest-I, II, and III showed that the posttest-III (81.76) mean score of ADL was higher than the score of pretest (76.24), and calculated t values were statistically significant at P < 0.001.

In a study done by Reddy MP and Reddy V[10] the stroke strategies were found to be effective to improve the functional outcome after stroke in the Comprehensive Medical Rehabilitation Unit, Saint Mary’s Regional Medical Center, Reno. Early mobilization and prevention of stroke-related complications improved their ability to participate in the comprehensive rehabilitation program. An interdisciplinary approach to stroke rehabilitation improved functional ability and QOL. He suggestedthe important aspects of stroke rehabilitation were patient and family education, treatment of stroke-related complications, and prevention of recurrent stroke.

Overall Physical Component Summary (PCS) scores over a period of time from the pretest to posttest-III between the study and control group patients showed an improvement in the mean scores in both groups which were statistically significant at P < 0.05 (F = 38.866). Statistically significant differences were found over a period of the study (pretest, posttest-I, II, and III) with an overall Mental Component Summary (MCS) score of P < 0.001 (F = 59.527) between the study and control group patients. A comparison of the overall mean score of SS-QOL within the study group revealed an improvement in posttest-III (181.40) than posttest-I which was statistically significant at P < 0.001.

Comparison of 12-domains mean score of SS-QOL within the study group of patients during posttest-I and III of energy, language, mobility, and self-care was statistically significant at P < 0.001, of family role, social role, and thinking was at P < 0.01, and of mood and work was at P < 0.05 level.

A research study conducted to investigate the self-care, self-efficacy QOL, depression, and functional independence and the relationship among poststroke patients at PT Fletcher Allen Health Care Medical Center Hospital of Vermont Campus, Burlington. The results found to be improvement in self-care, self-efficacy, and QOL at 1 month and 6 months poststroke.[11]

The description of the background variables of the caregivers of the patient with stroke [Table 8] revealed that 67 (78.8%) subjects in the study group and 66 (77.6%) subjects in the control group were female. Data related to occupation showed that 61 (71.8%) subjects in the study group and 59 (69.4%) subjects in the control group were housewives. Regarding the relationship with the patient, 66 (77.6%) of them in the study group and 64 (75.3%) in the control group were spouses. Related to prior experience as a caregiver, only 19 (22.4%) in the study group and 18 (21.2%) in the control group had prior experience.

The comparison of burden between the study and control group caregivers revealed that mean burden scores were 29.94 and 35.21 during posttest-I, 31.12 and 36.86 during posttest-II, 32.69 and 36.96 during posttest III in the study and control group, respectively. The mean scores were higher in the control group caregiver than in the study group caregiver during the posttests and were statistically significant at P < 0.01 level during posttest I and II and at P < 0.05 level during posttest-III.

A study was conducted to examine the changes in caregivers’ burden, physical and emotional health, social support network, and QOL during the first 6 months after the stroke among primary caregivers of stroke survivors.[12] The burden decreased consistently at 3 and 6-month intervals. The results indicate that caregivers adapted to their role change over the 6 months. Hence, nurses have to play a pivotal role to meet the caregivers’ needs and develop appropriate interventions for empowering caregivers in their role fulfillment.

A study was conducted to examine the effectiveness of family-mediated exercise intervention (FAME) among acute stroke patients by a randomized controlled trial in Dublin.[13] Forty participants with acute stroke were assigned to a control group and a FAME group, who received routine therapy and additional lower limb FAME therapy for 8 weeks. FAME group patients had significant improvement in walking and had regular follow-up (P < 0.05). The family members of FAME group caregivers reported fewer burdens when compared with those of the control group (P < 0.02). The findings proved that FAME intervention can serve to optimize patient recovery and caregiver burden following stroke.

There was an association between neurological dysfunction with pretest ADL which was statistically significant at P < 0.001. There was no association between the pretest ADL with the stroke risk factors and stroke subtype.

Based on the study findings, it is concluded that the combination of interventions like structured teaching, an information booklet on “Life after stroke,” and telephonic reminder and reinforcement are capable of increasing knowledge on stroke and thereby improving ADL and the QOL of patients with stroke and minimizing the caregiver burden in taking care of the patient with stroke. Public education and control of risk factors at a primary care level is the most appropriate strategy to meet the growing challenge of stroke.

Nurses have close contact with patients so they must take this opportunity to involve family members to enhance their knowledge of stroke rehabilitation to improve the QOL of their loved ones. Nurses can also plan an inpatient stroke rehabilitation program which will pave the way for cost-effective and better outcomes for both individuals and families. Providing information on the role of the caregiver in taking care of patients with stroke will reduce the caregiver’s burden.

A similar study could be conducted as a community outreach program. The study could be replicated in a different setting and with larger samples. A multicenter study could be carried out with the same interventions. A phenomenological study could be conducted to find out the needs of caregivers of stroke survivors.

Acknowledgment

The author would like to thank Drs V. Shankar, B.T. Basavanthappa, V. Natarajan, and Professor P.V. Ramachandran for their support throughout this research study.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
   References Top

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Mirzaei M, Truswell AS, Arnett K, Page A, Taylor R, Leeder SR. Cerebrovascular disease in 48 countries: secular trends in mortality 1950–2005. J Neurol Neurosurg Psychiatry 2012;83:138-45.  Back to cited text no. 1
    
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Feigin VL, Stark BA, Johnson CO et al. Global, regional, and national burden of stroke and its risk factors, 1990-2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet Neurol 2021;20:795-820. doi: 10.1016/S1474-4422(21) 00252-0.  Back to cited text no. 2
    
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Kamalakannan S, Gudlavalleti AS, Gudlavalleti VS, Goenka S, Kuper H. Incidence & prevalence of stroke in India: a systematic review. Indian J Med Res 2017;146:175-85. doi: 10.4103/ijmr.IJMR_516_15  Back to cited text no. 3
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Lo SH, Chang AM, Chau JP. Stroke self-management support improves survivors’ self-efficacy and outcome expectation of self-management behaviors. Stroke 2018;49:758-60. doi: 10.1161/STROKEAHA.117.019437  Back to cited text no. 4
    
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Kidd L, Lawrence M, Booth J, Rowat A, Russell S. Development and evaluation of a nurse-led, tailored stroke self-management intervention. BMC Health Serv Res 2015;15:359. doi: 10.1186/s12913-015-1021-y  Back to cited text no. 5
    
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Bakas T, Farran CJ, Austin JK, Given BA, Johnson EA, Williams LS. Stroke caregiver outcomes from the Telephone Assessment and Skill-Building Kit (TASK). Top Stroke Rehabil 209;16: 105–21. doi: 10.1310 /tsr 1602–105.  Back to cited text no. 6
    
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Larson J, Franzen-Dahlin A, Billing E, von Arbin M, Murray V, Wredling R. The impact of a nurse-led support and education program for spouses of stroke patients: a randomized controlled trial. J Clin Nurs 2005;14:995-1003.  Back to cited text no. 7
    
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Ware JE, Snow KK, Kosinski M, Gandek B. SF-36 Health Survey Manual and Interpretation Guide. Boston, The Health Institute, New England Medical Center, MA, 1993.  Back to cited text no. 8
    
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Montgomery RJV. Using and Interpreting the Montgomery Borgatta Caregiving Burden Scale, January 2006, http://www.researchgate.net/publication/265679222.  Back to cited text no. 9
    
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Reddy MP, Reddy V. After a stroke: strategies to restore function and prevent complications. Geriatrics 75 1997;52: 59-75.  Back to cited text no. 10
    
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Orest MR. Self-care self-efficacy, quality of life, and depression after stroke. J Neurol Phys Ther 2000;24:164.  Back to cited text no. 11
    
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Nir Z, Greenberger C, Bachner YG. Profile, burden, and quality of life of Israeli stroke survivor caregivers: a longitudinal study. J Neurosci Nurs 2009;41:92-105.  Back to cited text no. 12
    
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Galvin R, Cusack T, O’Grady E, Murphy TB, Stokes E. Family-mediated exercise intervention (FAME): evaluation of a novel form of exercise delivery after stroke. Stroke 2011;42:681-6.  Back to cited text no. 13
    


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  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8], [Table 9], [Table 10]



 

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