Received date: April 13, 2015; Accepted date: May 6, 2015; Published date: May 10, 2015
Citation: Nishio D, Takahashi H, Hayashi T, Hirano1 Y, Minakawa T, et al. (2015) Factors Influencing the Burden on Caregivers of Stroke Patients with Hemiplegia Living at Home. Int J Phys Med Rehabil 3:279. doi:10.4172/2329-9096.1000279
Copyright: © 2015 Nishio D, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Visit for more related articles at International Journal of Physical Medicine & Rehabilitation
Objective: The purpose of this study was to clarify the factors influencing burden on the caregivers of stroke patients with hemiplegia who live at home under their family’s care.
Methods: From July 2009 to July 2013, 20 hemiplegic stroke patients who provided written informed consent and met the following criteria were included in the study: Brunnstrom recovery stage<4, living at home at 6 months after discharge, and Barthel index<95 at 6 months after discharge. Age, sex, number of caregivers, Barthel index, frequency of using nursing-care services, and frequency of voluntary standing or walking training were evaluated as independent variables. Results of the Zarit Burden Interview, which reflects the burden for caregivers, were evaluated as dependent variables. Variables were analyzed with a stepwise regression analysis.
Results: Factors that influenced the burden on caregivers were frequency of using nursing-care services, number of caregivers, sex of patients, and frequency of voluntary training.
Conclusion: In stroke patients with a high dependence on nursing-care services, the burden on caregivers was large. Caution must be used in extending the findings of this study to general practice, but our study suggests that a higher frequency of voluntary training and a larger number of caregivers reduces the burden on caregivers of stroke patients after discharge.
Stroke; Burden on caregiver; Voluntary training
When stroke patients with hemiplegia live at home, care by the patient’s family is important. According to a 2013 report  on nursing care at home, the disease that necessitated the most nursing care was stroke, accounting for 21.7% of all patients in nursing care in Japan, and accounting for more than 30% with a high level of nursing care. Families with members in need of nursing care tend to consist of nuclear families and ageing spouses and 69.4% of caregivers reported experiencing "distress or stress in everyday life". Additionally, 72.6% of male caregivers and 78.3% of female caregivers reported "the family's sickness and nursing care" as a reason for "distress or stress in everyday life". During hospitalization, it is necessary to assess the burden on caregivers after the patient is discharged home. Kamel et al.  reported that caregivers of stroke patients had high scores on the Center of Epidemiologic Studies of Depression and the Caregiver Strain Index. Jaracz et al.  also reported that a higher burden on caregivers of stroke patients was associated with a lower capacity to deal with stress, higher emotional distress, and lower functional status of the patient.
In Japan, to address the accelerated ageing of the society and the increased needs for nursing care for the elderly, the government launched the Long-Term Care Insurance System  for the elderly (LTCI, or Kaigo Hoken) in April 2000. The main purposes of this system were to promote independent living of the elderly in the community, to share the burden of care for the elderly among all members of society, and to reduce the burden on family caregivers. Evidence from micro-level household data suggests that the introduction of LTCI helped Japanese households reduce income losses associated with caring for a disabled family member .
The convalescent rehabilitation ward of Hanno-Seiwa Hospital in Japan also recommends a voluntary training program  that specializes in patient mobility, so that the patient’s family may master the methods of care. However, it is unknown whether the LTCI and voluntary training program are useful for reducing the burden on caregivers of stroke patients. The purpose of this study was to clarify the factors influencing the burden on caregivers of stroke patients with hemiplegia who live at home under their family’s care.
Stroke patients with hemiplegia who were hospitalized in a convalescent rehabilitation ward of Hanno-Seiwa Hospital from July 2009 to July 2013 were retrospectively assessed, and those who met the following four criteria were included: (1) Brunnstrom recovery stage  (BRS) of the lower extremity<4 at discharge; (2) the patient living at home at 6 months after discharge; (3) Barthel index  (BI)<95 at 6 months after discharge; and (4) written informed consent provided by the patient. BI is a method of evaluating a patient’s activities of daily living (ADL) and consists of 10 activity items, with a total score for each activity item of 100. The higher the total BI scores are the greater is patient’s ability in ADL . BRS is a method of evaluating hemiplegic recovery in stroke patients that consists of six stages, with selective joint motion impossible from stages 1 to 4 . All patients underwent physiotherapy (PT), occupational therapy (OT), and speech therapy (ST), as described in the Appendix.
Outcome measures and statistical analysis
Age of the patient and primary caregiver, sex of the patient and primary caregiver, number of caregivers, patient BI, frequency of nursing-care service use through LTCI, and frequency of voluntary training were assessed. The main categories of at-home nursing care services used through LTCI include home-visit care, home-visit nursing, home-visit bathing service, home-visit rehabilitation, management guidance for in-home care, and rental service for assistive devices. Commuting services in Japan are defined as services delivered in a community-based facility, where users commute to receive personal care, support for ADL, and physical exercises, and they return home the same day . Definition of voluntary training was “standing more than 100 times per day” or “walking outdoors more than 1 km per day”.
These evaluations were conducted by a mail-back survey. The rehabilitation centre of Hanno-Seiwa Hospital mailed a survey form to all patients at 6 months after discharge, and patients who chose to participate mailed a completed survey form to the rehabilitation centre within 2 weeks. The Japanese version of the Zarit Caregiver Burden Interview  (J-ZBI) for primary caregivers was evaluated and used as a dependent variable; the J-ZBI is the Zarit Burden Interview  translated by Arai  into Japanese, and its high reliability and validity have been demonstrated . Stepwise regression analysis was used for statistical analysis, and p values less than 0.05 were considered statistically significant. Statistical analysis was performed using Microsoft Excel with the “Statcel3” add-in.
Ethical approval was obtained from the Ethics Committee of Hanno-Seiwa Hospital, Japan (Approval No. 140104). The survey form mailed to the patients and family included a paper explaining how the assessment data would be used in this study. Therefore, patients and family who returned a survey form agreed to this study.
Conventional rehabilitation program in the convalescent rehabilitation ward of Hanno-Seiwa Hospital
PT, OT, and ST based on the Japanese 2009 guideline for the management of stroke  were conducted daily for 1-3 units each (1 unit is 20 minutes, total 6-9 units). When the patient’s general condition was unstable, PT was started from the bedside and included range of motion exercises, positioning, sitting exercises, and standing exercises. If the patient’s general condition was stable, standing, mat, transfer, wheelchair movement, walking, and stair-climbing exercises were performed incrementally in a training room (gym). Additionally, in the walking and stair-climbing exercises for stroke patients with hemiplegia, physiotherapists used a knee-ankle-foot orthosis or an ankle-foot orthosis, depending on the severity of the hemiplegia and exercise capacity. OT included ADL training, such as using the bathroom, grooming, dressing, and bathing, and arm exercises, including changing hand dominance. ST included exercises for dysphagia and aphasia.
Voluntary training program in the convalescent rehabilitation ward of hanno-seiwa hospital
Voluntary training was recommended to the patients and caregivers. The training included standing, transferring, walking, and stair climbing. The voluntary training for patients and caregivers was performed in addition to the conventional rehabilitation program. The voluntary training program is shown in Table 1, and scenes of voluntary training activities are shown in Figure 1. The voluntary training program used in the recovery phase was developed by Hirano et al.  and based on the acute phase voluntary training with family participation reported by Maeshima et al. [13,14]. The objective of this voluntary program was to help patients’ families understand their relatives’ conditions and learn appropriate assistance methods. Voluntary training was carried out apart from the conventional rehabilitation program; it was conducted focusing on four abilities, standing, transferring, walking, and stair climbing. Tasks were repeated so that family members could help the patient perform them safely and easily. There were also seven stages of training that comprised varying amounts and levels of difficulty, corresponding to each patient’s degree of functional recovery. A physiotherapist provided the family members with initial instruction in the assistance methods, and the family members learned the methods by performing them under the supervision of the physiotherapist to confirm that the training was being conducted safely. The voluntary training aimed to support the family members in preventing patients from falling. According to our previous study , the average frequency with which patients over 65 years old trained voluntarily at home was 2.2 times per week.
|Exercise stage||Standing training||Transferring training||Walking training||Stair climbing/
|M1||Standing from a chair 100 times/day|
|M2||Standing from a chair 200 times/day||Transferring from the direction of the non-paralyzed side: 10 times/day
Pivoting foot: non-paralyzed side
|M3||Standing from a chair 300 times/day||Transferring to the contralateral side: 10 times/day
Pivoting foot: non-paralyzed side
|Walking with parallel bars: 2-3 repetitions (14-21 m) (forward walking, side walking)|
|M4||Standing from a chair ≥300 times/day||Transferring from the paralyzed side: 10 times/day
Pivoting foot: paralyzed side
|Walking with cane on the flat: 40 m twice||Stairs in the gym
Step height: 13 cm
4 steps × 2 repetitions
|M5||Standing from a chair ≥300 times/day||Walking with cane on the flat: 100 m twice||Stairs in the gym
Step height: 13 and 15 cm
7 steps × 2 repetitions
|M6||Standing from a chair ≥300 times/day||Walking with cane on the flat: 100 m ≥ twice||Stairs in the hospital
Step height: 20 cm
20 steps × 2 repetitions
|M7||Standing from a chair ≥300 times/day||Walking with cane on the flat: 100 m ≥ twice
Walking outdoors: 20-30 m
|Stairs in the hospital
Step height: 20 cm
20 steps × 2 repetitions
Table 1: The voluntary training program.
Figure 1: Scenes of voluntary training with family members. The characteristics of this training are that the family members assist patients’ mobility to acquire methods of voluntary training and mobility assistance at home. The characteristics of this program are a focus on standing training with the aim of improving trunk and dynamic balance and an emphasis on transferring, walking, and stair climbing/descent, which are directly linked to the ability to perform ADL.
Twenty patients met the inclusion criteria and were enrolled in this study. Patients’ demographic characteristics and the evaluated data are shown in Table 2. Seventy-five percent of the patients were male, although 90% of caregivers were female. The results of multiple regression analysis are shown in Table 3. The frequency of nursing-care service use through LTCI, number of caregivers, sex of patients, and frequency of voluntary training significantly affected the burden on caregivers, with R2=0.82, F (4,15)=17.16 and p=0.00002. High-frequency of nursing-care service use through LTCI and male patients associated with increased the burden on caregivers. Large number of caregivers and high-frequency of voluntary training associated with decreased the burden on caregivers.
|Age of patients, mean±SD (years)||68.2±10.8|
|Sex of patients, male/female (n)||15/5|
|Disease, cerebral haemorrhage/cerebral infarction (n)||10/10|
|Age of primary caregiver, mean±SD (years)||63.9±13.9|
|Sex of caregivers, male/female (n)||2/18|
|Number of caregivers, mean±SD (n)||1.3±0.5|
|BI of patients, median, range (score)||70, 5-95|
|Frequency of nursing-care service use by LTCI,
|Number of users of nursing care services by LTCI(n)|
|Commuting for care (day care)||10|
|Commuting rehabilitation (day service)||8|
|Home-visit long-term care (short-stay care)||4|
|Frequency of voluntary training, mean±SD (times/week)||2.4±3.0|
|J-ZBI of primary caregiver, mean±SD (score)||25.1±17.0|
Table 2: Distribution of each evaluation item and of patients’ primary
|Partial regression coefficient||Standard partial regression coefficient|
|Value of constant||56.74|
|Frequency of use of nursing-care service||2.83||0.60|
|through LTCI (times/week)|
|Number of caregivers||-9.32||-0.55|
|Sex of patients (male: 1, female: 0)||-18.69||-0.70|
|Frequency of voluntary training (times/ week)||-2.62||-0.69|
|R2=0.82, F (4, 15)=17.16, p=0.00002|
Table 3: Factors influencing J-ZBI selected by multiple regression analysis.
Among the factors investigated in this study, those influencing the burden on caregivers of hemiplegic stroke patients were (1) frequency of nursing-care service use through LTCI, (2) number of caregivers, (3) patient’s sex, and (4) frequency of voluntary training. Because of the small number of female patients, however, it is difficult to conclude that patient sex influenced ADL after discharge.
Kitahama et al.  reported that the use of nursing-care services through LTCI by stroke patients decreased the burden on caregivers. By contrast, Kamimura et al.  reported that the use of nursing-care services through LTCI by stroke patients did not influence the burden on caregivers. Moreover, Watanabe et al.  reported that the burden on caregivers of stroke patients did not decrease after introducing LTCI. Therefore, use of nursing-care services through LTCI does not always reduce the burden on caregivers for stroke patients. In this study, frequent use of nursing-care services through LTCI by stroke patients was associated with a higher burden on caregivers. Chang et al.  reported that caregiver’s mental health and burden were significantly associated with caregivers' simultaneous health problems. Caregiver’s health status and ability of care may have a greater influence than nursing-care services through LTCI. Although stroke patients posing a greater burden on a caregiver might use nursing-care services more willingly, it is possible that alleviation of the caregiver’s burden is difficult even with the availability of professional nursing services.
Nishii et al.  reported that the burden on caregivers of stroke patients increased due to limitations on the caregivers’ abilities to engage in housework and social activity. In this study, a smaller number of caregivers resulted in a higher burden on the caregivers of stroke patients. It is thought that fewer caregivers of a stroke patient, leading to limitation of housework or social activity, may have a bad influence on the burden on those caregivers. In such cases, the caregivers themselves also need care.
The voluntary training program at the convalescent rehabilitation ward of Hanno-Seiwa Hospital is useful to allow stroke patients living at home to gain independence in ADL by specializing in mobility. According to our previous report , a shorter hospitalization, including voluntary training with family participation, and continued training at home are factors contributing to the improvement of ADL after discharge. Karla et al.  have reported that training caregivers in the basic skills of moving and handling the patient, facilitating ADL, and simple nursing tasks reduced the burden of care and improved quality of life (QOL) for both the patients and caregivers. Additionally, Isaac et al.  reported that the level of caregiver burden was significantly correlated with QOL of elderly stroke patients. Morimoto et al.  also reported that increased burden significantly related to decreased health-related QOL among stroke caregivers. In this study, the higher the frequency of voluntary training divided by stroke patients at home, the lower the burden on their caregivers. It is important to educate caregivers of stroke patients that mobility, which is the basis of ADL, may improve even after discharge. To learn methods of assisting mobility seems useful to understanding the disease and reducing confusion for caregivers. Educating patients and families about the voluntary training program for mobility during hospitalization may decrease the burden on caregivers after discharge from the hospital.
For stroke patients highly dependent on nursing-care services and with few caregivers, the burden on caregivers was heavy. However, a high frequency of voluntary training reduced this burden. Because this study was performed with few inpatients in one medical institution recommending one voluntary training program, our results may not apply to patients at other medical institutions. The male/female ratio of the patients to caregivers and as well as the frequency of hemorrhagic stroke, do not reflect those in general. These issues are possible limitations in this study. However, it appears that high-frequency nursing-care service does not always reduce the burden on caregivers. Voluntary training, involving family participation in particular, is quite important to reduce the burden on caregivers of stroke patients after discharge.