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A Multicenter Pilot Study of Burden Among Caregivers of Geriatric Rehabilitation Patients With Neuromusculoskeletal Diseases

Borman, Pinar MD1; Gökçe-Kutsal, Yeşim MD1; Terzioğlu, Füsun RN, Msc, PhD2; Okumuş, Muyesser MD3; Ceceli, Esma MD3; Karahan, Sevilay PhD, MD4; Şenel, Kazim MD5; Gökkaya, Kutay Ordu MD6; Doğan, Asuman MD6; Eskiyurt, Nurten MD7; Günaydin, Rezan MD8; Eyigör, Sibel MD9; Şahin, Nilay MD10; Şahin, Mehtap MD3

doi: 10.1002/rnj.272
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Purpose: In this study, we aimed to describe the sociodemographic characteristics of caregivers of patients in a geriatric unit and to clarify the relationship between caregiver burden and specific clinical variables in the patients and the characteristics of the caregivers.

Design: Cross-sectional multicenter study.

Methods: One hundred twenty-three patients and 123 caregiver dyads, with mean ages of 72.5 ± 7.7 years and 51 ± 14.7 years, respectively, were included. The functional, psychological, and cognitive statuses of the patients were determined, and the sociodemographic characteristics of the caregivers as well as the type and duration of caregiving were recorded. Caregivers completed the Caregiver Burden Inventory (CBI) to measure the perceived burden of care. Most patients were female and generally lived with their family.

Findings: Most of the caregivers were family members (90%), female (73.2%), primary school graduates (52.8%), and first-degree relatives (73.1%). The average CBI score was 33, and the highest CBI subscores were for time, developmental, and physical burdens. Caregiver burden correlated with the patient’s ambulatory, psychological, and cognitive status and with the caregiver’s age, gender, income level, and duration of caregiving.

Conclusions: We have highlighted the relationship between caregiver and patient characteristics in a cohort of elderly Turkish patients with neurological and musculoskeletal disorders. In particular, we have highlighted the heavy caregiver burden in a developing country.

Clinical Relevance: Our results may guide the nurses to understand the requirements of caregivers and to help them find suitable resources that would meet their needs to cope with their burden.

1 Department of Physical Medicine and Rehabilitation, Medical Faculty, Hacettepe University, Ankara, Turkey

2 Faculty of Nursing, Hacettepe University, Ankara, Turkey

3 Department of Physical Medicine and Rehabilitation, Medical Faculty, Kirikkale University, Kirikkale, Turkey

4 Department of Bio-Statistics, Medical Faculty, Hacettepe University, Ankara, Turkey

5 Department of Physical Medicine and Rehabilitation, Medical Faculty, Erzurum University, Erzurum, Turkey

6 Clinic of Physical Medicine and Rehabilitation, Ankara Rehabilitation Training and Research Hospital, Ankara, Turkey

7 Department of Physical Medicine and Rehabilitation, Medical Faculty, Istanbul University, Istanbul, Turkey

8 Department of Physical Medicine and Rehabilitation, Medical Faculty, Ordu University, Ordu, Turkey

9 Department of Physical Medicine and Rehabilitation, Medical Faculty, Ege University, Izmir, Turkey

10 Department of Physical Medicine and Rehabilitation, Medical Faculty, Balikesir University, Balikesir, Turkey

Correspondence: Pinar Borman, Department of Physical Medicine and Rehabilitation, Faculty of Medicine, University of Hacettepe, Sihhiye, Ankara, Turkey. E-mail:

Accepted February 4, 2016.

Cite this article as: Borman, P., Gökçe-Kutsal, Y., Terzioğlu, F., Okumuş, M., Ceceli, E., Karahan, S., Şenel, K., Gökkaya, K. O., Doğan, A., Eskiyurt, N., Günaydin, R., Eyigör, S., Şahin, N., & Şahin, M. (2017). Amulticenter pilot study of burden among caregivers of geriatric rehabilitation patients with neuromusculoskeletal diseases. Rehabilitation Nursing, 42(4), 199–209. doi: 10.1002/rnj.272

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According to the 2013 World Population Aging Report, 10% of the population in Turkey was 65 years old and older (United Nations, 2013). Moreover, it is estimated that 20% will be elderly in 2050, which will equate to 15 million people in Turkey (Population Reference Bureau, 2008). With increasing life expectancy, chronic neurological and musculoskeletal diseases are emerging as major public health problems, especially in developing countries including Turkey. The most common musculoskeletal disorders in this group are degenerative, rheumatologic, and neurologic diseases (i.e., neurological and musculoskeletal diseases). These lead to pain, decreased range of joints motion and muscular strength, as well as functional disability. In the absence of any curative approach, these conditions are treated palliatively in geriatric rehabilitation units (Clark et al., 2010 ; Günaydin et al., 2011 ; Ordu Gokkaya et al., 2012).

Health care in Turkey used to be dominated by a centralized state system run by the Ministry of Health. In 2003, the governing Justice and Development Party introduced a sweeping health reform program aimed at increasing the ratio of private to state health provision and making health care available to a larger share of the population. The fragmentary financing and service delivery system was replaced with strengthened financial and organizational structure. The Ministry of Health is the main provider of healthcare services. The Social Security Institution (SSI) has become a monopsony on the purchasing side of healthcare services, financed through payments by employers and employees and government contributions in cases of budget deficit. The government has supplied additional opportunities for elderly people. Even so, elderly patients generally seek inpatient rehabilitation due to transportation, economic, or social problems in Turkey. Public transportation and health services are provided free to insured and disabled people over 65 years old. Although social support is provided for food and house cleaning through Elderly Solidarity Centers in cities, many elderly patients have no access to these services because of lower education levels or living in rural parts of the country. In addition, they generally cannot afford transportation for outpatient rehabilitation. Therefore, disabled patients and their families generally prefer inpatient rehabilitation for their chronic conditions.

Inpatient geriatric rehabilitation programs involve multidisciplinary care that includes physiatrists, physiotherapists, psychologists, and nurses. Nurses actively participate in each part of the geriatric rehabilitation, guiding their aims, processes, and philosophies. According to international frameworks, rehabilitation nurses have many responsibilities, including roles as educators, caregivers, counselors, care coordinators, patient advisers, researchers, and expert witnesses for elderly patients and their families (Eliopoulos, 2014 ; Mauk, 2014). In Turkey, nursing regulations were revised and enforced in 2010, clearly defining the duties and responsibilities of rehabilitation nurses. However, universal implementation is incomplete, and the number of staff on rehabilitation wards is often inadequate. Thus, patients and caregivers are usually admitted together during the hospitalization period, particularly in government hospitals.

Because of the loss of physical and functional capacity, there is increased need for supervisors and personal care among elderly patients with chronic musculoskeletal conditions. Because these patients require assistance managing the disease and performing activities of daily living, many seek support from family members or paid professional caregivers. Caregivers therefore play a greater and more active role in the coordination and provision of care for these patients (Alpert & Womble, 2014 ; Byun & Evans, 2015 ; McLennon et al., 2014). As a part of Turkish culture, care of the elderly is usually undertaken by families, which means that there are no direct financial costs for care. However, although family members may take any retirement pension owed to the patients, they rarely hire professional caregivers.

Caregiver burden has been described as the physical, psychological, and social problems and disruption experienced by a principal caregiver (Bartolo et al., 2010 ; Okamoto & Harasawa, 2009). Family or professional caregivers can suffer significant burden related to their caregiving and support roles, and they may have a greater risk of subjectively perceived illness and decreased quality of life (Brank & Wylie, 2014 ; Friedemann & Buckwalter, 2014). Therefore, it is important to identify the characteristics of caregivers and the factors that affect their burden. In addition, the physical and psychological functioning of the patients themselves has been shown to impact the functional status of caregivers (Bocchi et al., 2010 ; Das et al., 2010 ; Hughes et al., 2014 ; Nahm et al., 2010 ; Okura & Langa, 2011). Identifying those factors associated with caregiver burden could provide important targets for intervention or support programs.

The impact of caregiving has been extensively reported among caregivers of elderly patients with a wide variety of illnesses particularly focusing on neurological, systemic, and emotional conditions, such as Alzheimer’s disease, dementia, stroke, advanced systemic failure, or cancer (Friedemann & Buckwalter, 2014 ; Garlo et al., 2010 ; Mosher et al., 2013 ; Okura & Langa, 2011). Numerous studies have also concentrated on the care burden among caregivers of patients with neurological conditions (Bakas et al., 2004 ; Bartolo et al., 2010 ; Das et al., 2010 ; Rigby et al., 2009 ; Taricco et al., 2014), but few have focused on that of patients with musculoskeletal conditions (Brouwer et al., 2004 ; Peters et al., 2012 ; Reis et al., 2013). Furthermore, only a limited number of studies have analyzed the characteristics of both patient and caregiver on caregiving burden for elderly rehabilitation patients with neurological and musculoskeletal diseases (Bartolo et al., 2010 ; Bocchi et al., 2010 ; Byun & Evans, 2015 ; Das et al., 2010 ; McLennon et al., 2014 ; Nahm et al., 2010). Of these, the majority focused on the caregivers of stroke patients (Bakas et al., 2004 ; Bartolo et al., 2010 ; Das et al., 2010 ; Ilse et al., 2008 ; Parag et al., 2008 ; Peyrovi et al., 2012 ; Vincent et al., 2009). Few studies have been conducted in developing countries using patients with functional limitations in rehabilitation units (Bhattacharjee et al., 2012 ; Bocchi et al., 2010 ; Chan et al., 2013 ; Reis et al., 2013). To the best of our knowledge, no English-language studies have analyzed caregiving in the context of geriatric rehabilitation, using chronic physical disability as a common problem among different neurological and musculoskeletal diseases.

In this study, we aimed to identify the caregiver burden, the sociodemographic characteristics of caregivers, and the relationship between caregiver burden and the characteristics of patients and caregivers in geriatric rehabilitation units. The study group included elderly Turkish patients and their primary caregivers (as dyads) enrolled in a geriatric rehabilitation program for the treatment of chronic neurological and musculoskeletal conditions.

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Materials and Methods

This was a descriptive cross-sectional multicenter study designed and conducted by members of the Geriatric Rehabilitation Research Group of the Turkish Physical Medicine and Rehabilitation (PMR) Association and a head nurse coordinator. The head nurse coordinator was from the main responsible university, and the physiatrists were from the Geriatric Rehabilitation Research Group of the Turkish PMR Association who volunteered to take part in this study. The Geriatric Rehabilitation Research Group has 29 members from different parts of Turkey, and 13 physiatrists from eight different health centers were involved in the study. Therefore, the study was conducted in eight different university or education and research hospitals.

The study included 166 patients hospitalized between September 2011 and March 2012, together with 166 caregivers as dyads. The inclusion criteria for the patients were age of 65 years or older and current enrollment in an inpatient rehabilitation program for neurological or musculoskeletal conditions. Patients who did not consent to participate in the study, who were aphasic, who were in the terminal stage of comorbid illnesses or cancer, and who were with severe dementia or Alzheimer’s disease were excluded from the study. A caregiver was defined as someone responsible for the care of an ill, frail, or disabled individual. An individual was included as a caregiver based on at least two of the following aspects: (1) they provided care for someone with a chronic illness or disease, (2) they managed medications or communicated with health professionals on someone’s behalf, (3) they helped with daily living activities such as bathing or dressing, and (4) they managed the household activities, including preparing meals or paying bills, for someone who could not do these activities alone. Caregivers with cognitive impairment, psychological disorders, or chronic comorbid diseases that would affect their ability to provide care were not included in the study.

All enrolled caregivers accompanied patients during the inpatient rehabilitation program. Of the 166 patient– caregiver dyads, 123 met the selection criteria. Both patients and caregivers provided their written informed consent to participate in the study, which was approved by the local ethics committee. If the patient or caregiver was unable to give informed consent or if the patient was medically unstable or reluctant to participate in the study, they were excluded.

Patients were evaluated with respect to their demographic (age, gender, educational level, marital status, social security status, and living arrangement) and clinical determinants (body mass index, disease duration, comorbidity, functional ambulation status, cognitive status, and depression). In the patient group, ambulation status, depression, and cognitive status were evaluated with the Functional Ambulation Classification Scale (FACS), the Yesavage Geriatric Depression Scale (GDS), and the Mini-Mental State Examination (MMSE), respectively (Ertan & Eker, 2000 ; Keskinoglu et al., 2009 ; Viosca et al., 2005 ; Yesavage & Sheikh, 1986). These assessment tools are appropriate and recommended in geriatric populations (Kane et al., 2004). All assessments were conducted and evaluated by the treating physicians during hospitalization. The physiatrists were educated about the administration of the tools. They tested the tools in 10 elderly and caregiver dyads and did not report any problems before the study. Patients from each center were sequentially included in the evaluation in predefined numbers.

The FACS helps to determine the ambulatory ability on self-exclusive functional levels, evaluating human assistance rather than devices and supports. This classification system categorizes patients according to basic motor skills that are necessary for functional ambulation without assessing the factor of endurance. The validated Turkish form has been used in previous studies (Gunaydin et al., 2011) with six functional levels ranging from 0 to 5. Level 0 indicates nonambulation, Level 1 indicates nonfunctional ambulation, Level 2 indicates household ambulation, Level 3 indicates ambulation to outside the house, Level 4 indicates independent community ambulation, and Level 5 indicates normal ambulation (Viosca et al., 2005).

The Yesavage GDS is a self-report assessment used to identify depression in the elderly (Yesavage & Sheikh, 1986). The short version of GDS contains 15 questions with dichotomic answers (yes/no), and the Turkish version has been validated (Ertan & Eker, 2000). Higher scores indicate a tendency toward depressive mood, with scores above 5 indicating possible depression and scores over 10 indicating a definite diagnosis of depression.

The MMSE is a brief, two-part, 30-point, bedside screening questionnaire for cognitive impairment that has been validated for Turkish subjects (Keskinoglu et al., 2009). The possible scores range between 0 and 30, with scores of 25–30 considered intact or normal, scores of 21–24 considered suggestive of mild deterioration, and scores of <9 considered diagnostic of severe dementia. It also has subgroups for orientation, recall memory, attention and calculation, registration, language, repetition, and complex commands. The lower scores indicate greater severity of cognitive dysfunction.

Patient comorbidities were assessed using the Functional Comorbidity Index, which is an 18-item list of diseases that are each given 1 point if present. The final score is the sum of the items (Groll et al., 2005).

We also recorded the type of caregiving (family member or paid professional) and sociodemographic characteristics of the caregivers (age, gender, marital status, educational level, income level, employment status, living arrangement, duration of caregiving, total amount of time with the patient per day, and relationship with the patient). The family caregivers were classified as first-degree relatives (wife/husband or son/daughter), second-degree relatives (son- or daughter-in-law), or other relatives.

The validated Turkish version of the Caregiver Burden Inventory (CBI) was used to measure the level of perceived burden of care (Küçükgüçlü et al., 2009). CBI is a 24-item self-administered questionnaire that includes five domains, including time dependence, developmental, physical, social, and emotional burdens. All items are rated on a 5-point Likert scale, ranging from 0 (not at all disruptive) to 4 (very disruptive). The global score is obtained by summing the scores of each subscale. Higher scores indicate greater caregiver burden (Novak & Guest, 1989).

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Statistical Analysis

The collected data were evaluated and analyzed by an expert statistician upon completion of the patient evaluations from all the centers. Descriptive statistics are presented as mean ± standard deviation and median (maximum–minimum) for continuous variables, and frequencies and percentages for qualitative data. The normality of the distribution of continuous variables was analyzed by the Shapiro–Wilk test. The comparisons for continuous variables between the two groups (patients and caregivers) were performed by the Student’s t test and the Mann–Whitney U test as appropriate. Chi-square tests were used to define the relation between categorical variables. Spearman correlation, Kruskall–Wallis test, and Chi-square tests were used to evaluate the relationship between CBI scores and the variables of patients and caregivers as appropriate. Finally, a multiple regression analysis was performed that included all statistically significant variables from the bivariate analysis. The level of significance was set at .05. All statistical analyses were performed using SPSS for Windows, Version 15.0 (SPSS, Inc., Chicago, IL).

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In all, 123 patient–caregiver dyads were recruited from the inpatient PMR clinics of eight different hospitals across Turkey. The demographic and clinical variables of the patients are shown in Table 1. Most of the patients were female and lived with their family. All the patients were hospitalized for rehabilitation of chronic neurological and/or musculoskeletal diseases. The main diagnoses were degenerative osteoarthritis (52.4%), stroke (50.4%), balance disorders (40.7%), osteoporosis (22.8%), degenerative disc disease (20.8%), and inflammatory rheumatic disease (13%). Most of the patients had more than one condition or comorbid disease. The median number of comorbid diseases was four, with the most common being hypertension, diabetes, vascular diseases, and endocrinopathies.

Table 1

Table 1

The sociodemographic characteristics and CBI scores of the caregivers are shown in Table 2. In total, 123 caregivers completed the study, of which 73.2% were women and 26.8% were men, and 90% were family members. The mean caregiver age was 51 years. The typical educational attainment among caregivers was the primary school level (52.8%), and the majority had a middle-income level. Most family caregivers were spouses and two-thirds lived with the patients in the same home. Most of the caregivers provided care on a full-time basis (66%), although 8.9% of caregivers worked full time or part time outside the home. Nearly 20% reported that they had quit a job or retired early to care for the patient.

Table 2

Table 2

The mean total CBI score was 33. The highest scores were for time burden, followed by developmental and physical burdens, reflecting the amount of time dedicated to caregiving, the lack of time for themselves, and the physical dependence of the patients for activities of daily living. Gender differences were also examined. The mean CBI physical subscore was statistically higher for female caregivers than that for male caregivers (8.1 ± 5.7 vs. 6.7 ± 5.5), whereas no difference was found between men and women regarding the other CBI subscales (p > .05).

To differentiate the caregivers of patients with neurological (stroke) and non-neurological conditions (degenerative diseases), the study group was classified into neurological and degenerative subgroups according to the main disease. The sociodemographic characteristics and CBI scores of these groups are defined in Table 3. The demographical properties were similar between the groups (p > .05). Although the mean total CBI score was higher in the neurological group than that in the degenerative group, the difference was not statistically significant (p > .05).

Table 3

Table 3

The CBI scores were related to the sociodemographic characteristics of the patients. Table 4 indicates the correlation coefficients between CBI scores and related patient characteristics. The burden of care was clearly related to disease duration and to the cognitive, functional, and psychological statuses of patients. However, demographic variables including age, gender, marital status, educational level, social security status, and comorbidity scores did not correlate with the CBI scores (p > .05).

Table 4

Table 4

Statistically significant correlations were found between the CBI scores and the functional ambulation, cognitive status, and depression of patients. Caregiver burden negatively correlated with ambulatory status measured by FACS and cognitive status measured by MMSE, indicating that impaired functional ability and cognitive status affected the burden of care. A positive correlation was determined between CBI scores and depression scores among patients.

We further examined the correlates of caregiver characteristics and CBI scores (Table 5). Caregiver age and gender, income level, duration of caregiving, and total amount of time with the patient per day were related to CBI subscores. Mean caregiver age was negatively correlated with the social scores on CBI, whereas the duration of caregiving was positively correlated with the physical and emotional burden scores. However, the type of caregiving was not associated with the CBI scores. The total and sub-scores of CBI were similar between family and paid professional caregivers. Full-time caregivers had statistically higher CBI scores than part-time caregivers as expected. Educational attainment, marital status, and degree of relation between the caregiver and patient were not related with the CBI scores (p > .05).

Table 5

Table 5

Finally, a multiple regression analysis was performed using all statistically significant variables identified during the bivariate analysis. Backward modeling showed that functional ambulation scores (β = 0.404, p < .001) and disease duration (β = 0.712, p = .023) remained the most significant characteristics associated with a higher caregiver burden. Caregiver income level was the most significant caregiver factor determining caregiver burden (β = 0.612, p < .042).

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Although several studies have assessed the burden of caregivers of elderly patients with chronic neurological and musculoskeletal conditions, those available in the literature have included only a limited number of caregivers (Bartolo et al., 2010 ; Bhattacharjee et al., 2012 ; Bocchi et al., 2010 ; Das et al., 2010 ; Larson et al., 2008 ; Nahm et al., 2010 ; Rigby et al., 2009) or have not framed the issues in the context of geriatric rehabilitation (Bocchi et al., 2010 ; Das et al., 2010 ; Parag et al., 2008 ; Peyrovi et al., 2012). To the best of our knowledge, this is the first study in the English literature to evaluate the caregiver burden among those providing care to elderly Turkish patients with neurological and musculoskeletal conditions in rehabilitation units. We performed a cross-sectional study of 123 patient–caregiver dyads to assess the burden of care and differences in that burden between patients with neurological and degenerative conditions.

When assessing the factors related to the burden of care in these elderly patients, we identified that the burden of care was related to certain sociodemographic and clinical characteristics of the patients and caregivers.

In our study, 90% of the caregivers were family members and many were spouses or daughters. The decision to care for a spouse is often driven by necessity, regardless of gender, and is therefore not always a voluntary act. Previous reports indicated that the experiences of spouses as caregivers could be distinct from those of adult children, with spouses experiencing more burden and depression than other family members (Friedemann & Buckwalter, 2014 ; Gibbons et al., 2014). In our study, we identified higher CBI scores in spouse caregivers than in children caregivers, but the difference was not statistically significant, indicating similar levels of burden. This may be due to the different cohort sizes and different cultural experiences and beliefs about caregiving. Spouses may feel more obliged than adult children and could therefore adjust their role more successfully (Friedemann & Buckwalter, 2014 ; Savundranaayagam et al., 2011). Daughters represented a large proportion of adult caregivers in our study. According to Turkish culture, women are generally expected to perform the caregiving role and daughters may perceive it to be an extension and fulfillment of this natural role. Therefore, the similar burden experience between spouses and adult children was not surprising.

Caregivers assume significant responsibility in the management of geriatric patients, including symptom monitoring, providing emotional support, and daily management of medications and exercise. In agreement with previous authors who have shown that caring for a geriatric patient is a stressful and burdensome experience, burden was mostly related to disease duration and the level of functional ambulation of the patient. Cognitive, functional, and psychological problems in the elderly patients might also negatively affect the caregiver’s ability to cope with the patient’s condition. Long-term care of a geriatric patient with musculoskeletal conditions might represent a chronic burden that results in vulnerability to physical and psychological problems (Del-Pino-Casado et al., 2014 ; Nayeri et al., 2015).

Caregiver Burden Inventory was shown to be an effective multidimensional tool for evaluating the impact of burden on many aspects of the caregiver’s life, including physical, social, and emotional dimensions (Küçükgüçlü et al., 2009). The burden among the caregivers of elderly patients was quite high, especially concerning time, developmental, and physical burdens. Few studies have investigated the impact of care of primarily physically disabled elderly patients (Bartolo et al., 2010 ; Brouwer et al., 2004 ; Chan et al., 2013 ; Das et al., 2010 ; Okamoto et al., 2009 ; Reis et al., 2013). In contrast with previous studies (Byun & Evans, 2015 ; Hughes et al., 2014 ; Larson et al., 2008 ; McDonnell & Ryan, 2013 ; McLennon et al., 2014 ; Okura & Langa, 2011 ; Parag et al., 2008), we did not include patients with psychiatric conditions or conditions such as Alzheimer’s disease, dementia, or stroke that cause aphasia. We also analyzed the difference in caregiver burden between patients with neurological and degenerative diseases, which revealed similar burden levels consistent with the exclusion of patients with cognitive dysfunction.

Previous studies have indicated that functional disability predicted perceived care-related life changes and depression in caregivers (Peyrovi et al., 2012). Bartolo et al. (2010) analyzed the burden on caregivers of patients with chronic neurological conditions participating in community neurorehabilitation programs and found that the physical and emotional burden of care negatively correlated with the functional independence of the patient. Furthermore, the caregivers in their study reported that they needed interventions to reduce their burden. Das et al. (2010) evaluated the burden of caregivers in stroke patients in an urban community using a burden assessment schedule and found that financial burdens and psychological stress were especially prevalent in female caregivers. Several studies (Bhattacharjee et al., 2012 ; Rigby et al., 2009 ; Taricco et al., 2014 ; Vincent et al., 2009) have also investigated the burden of care experienced by stroke caregivers, reporting that the burden of care and dependency were related to the ages of the patients and caregivers. Similarly, we observed a relationship between the burden of care and the patients’ cognitive ability, depression level, and functional ambulation, as well as the caregivers’ age and duration of caregiving.

Examining the different domains of CBI, we found that the factors most often related to caregiver burden were the amount of time needed for caregiving, the functional and mental status of patients, and the level of depression in patients. As expected, there was a negative correlation for CBI with functional ambulation and cognitive status in patients. In contrast, CBI strongly and positively correlated with the depression scores of patients. With respect to caregiver characteristics, the age of caregivers and the duration of caregiving were related to caregiver burden. In our study, the functional status and disease duration of patients and the economic level of caregivers were the factors most related with caregiver burden. This is consistent with the results of previous studies in different rehabilitation settings reporting that the most relevant factors were the time spent caregiving and restrictions on the caregivers’ personal time (Bartolo et al., 2010 ; Bocchi et al., 2010 ; Das et al., 2010 ; Hirano et al., 2011 ; Hughes et al., 2014).

In contrast with other studies, we failed to determine any influence on the type of caregiving on the caregivers’ burden. Indeed, previous studies have indicated that family caregivers experience greater burden compared with paid caregivers (Hughes et al., 2014) and that unpaid caregivers of stroke survivors experience greater burden than paid caregivers (Parag et al., 2008). However, both family and professional caregivers had similar CBI scores in our study, indicating a similar degree of burden between family and professional caregivers. In developing countries, a sandwich generation, that is, those who care for their aging parents while supporting their own children, is known to exist. Housewives or women generally provide care and rarely work outside the home (Do et al., 2014). Therefore, the similar burden of caregiving between paid and unpaid caregivers is not surprising. As the number of professional caregivers in our study was too small to provide definitive results, further studies are needed to clarify this issue.

Consistent with previous evidence of a higher level of burden among women, female caregivers in our study experienced greater physical burdens than their male counterparts (Akpinar et al., 2011 ; Del-Pino-Casado et al., 2014 ; Friedemann & Buckwalter, 2014 ; McDonnell & Ryan, 2013). In Turkey and worldwide, caregiving burden falls primarily on women. Previous studies have indicated that women become more connected to the patients they care for and take fewer breaks compared with male caregivers (Akpinar et al., 2011 ; Friedemann & Buckwalter, 2014). In addition, caregiving for the disabled elderly patients requires greater physical conditioning, making it unsurprising that women experienced more physical burden than men. However, the other subscales were found comparable between male and female caregivers, which could be explained by the small male cohort in our sample. The role of gender on perceived burden requires further clarification.

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Key Practice Points

  • We have highlighted the level of caregiver burden in providing care for elderly rehabilitation patients with chronic neurological and musculoskeletal conditions.
  • Geriatric rehabilitation will continue to have an important role, but the successful modification of patient and caregiver characteristics could improve care in hospitalized patients, resulting in an increase in the quality of life of caregivers and patients alike.
  • The nurse’s role in the rehabilitation of geriatric patients is crucial. In addition to focusing on the needs of the elderly, nurses should examine the needs of caregivers by assessing their roles such as understanding, perceptions, and other related factors. Our resultsmay provide a useful resource for defining the sociodemographic properties and burden of caregiving among individuals who care for patients undergoing inpatient geriatric rehabilitation in developing countries.

The limitations of this study include its uncontrolled design and the relatively small number of participants. The inclusion of all screened subjects might have provided better data for the analysis; however, this was a pilot study and future studies with larger numbers of patients and caregivers could be used to strengthen these results. Our sample was also relatively heterogeneous, including elderly patients with degenerative, neurological, or endocrinological conditions who shared common traits of being primarily physically disabled and enrolled in an inpatient geriatric rehabilitation program. We also conducted statistical tests to compare and evaluate the level of caregiver burden between patients with neurological and degenerative conditions, which revealed similar burden among those providing care to the neurological and the degenerative group. Our data indicating statistically similar CBI scores between caregivers of patients with degenerative arthritis and patients with neurological problems such as stroke (data not shown) may help to ignore the effect of this heterogeneity in our study. Another limitation may be the inconsistency of the data due to the administration of the tools by different physicians. But as these tools were commonly used by the physiatrists in previous studies and were applied in a pretest sample before the study, we may disregard this effect on our data.

In conclusion, we have highlighted the level of caregiver burden in providing care for elderly rehabilitation patients with chronic neurological and musculoskeletal conditions. Our results may provide a useful resource for defining the sociodemographic properties and burden of caregiving among individuals who care for patients undergoing inpatient geriatric rehabilitation in developing countries. Geriatric rehabilitation will continue to have an important role, but the successful modification of patient and caregiver characteristics could improve care in hospitalized patients, resulting in an increase in the quality-of-life of caregivers and patients alike.

The nurse’s role in the rehabilitation of geriatric patients is crucial. In addition to focusing on the needs of the elderly patients, nurses should examine the needs of caregivers by assessing their roles such as understanding, perceptions, and other related factors. Previous studies have indicated that most family caregivers underuse healthcare resources and may have limited access to them. Furthermore, they may have religious or cultural beliefs, guilt about needing help, or difficulties finding suitable resources that place barriers to the use of services that would otherwise decrease their burden and meet their needs (Friedemann et al., 2014 ; Kim et al., 2013 ; Mauk, 2012 ; Montgomery & Kosloski, 2013). Rehabilitation nurses act as patient advocates and educators who work in partnerships with the client and family (caregivers) to foster and support the patient’s active participation in determining healthcare decisions. The rehabilitation nurse holistically focuses on the patient’s and family’s values and goals as they evaluate and manage aspects of the environment to support the client’s well-being. In the provider role, the rehabilitation nurse uses research findings and other evidence in designing and implementing a plan of care that is multidimensional, high quality, and cost-effective (Mauk, 2014). Therefore, nurses must understand the perspective of caregivers and work with the family to ensure that the necessary changes are made while respecting the beliefs and values of caregivers. Cooperation and support between nurses and caregivers and the provision of nursing assistance to access services may be critical to improving the quality of life of disabled elderly patients and their caregivers.

Our findings suggest the need for research to clarify the effects of caregiving in different populations and the need for cross-cultural comparisons of patient and caregiver characteristics. Further studies are also needed on the structure of the caregiving process and on the most effective means of supporting the caregivers of geriatric patients with neurological and musculoskeletal conditions to individualize intervention programs for caregivers of elderly rehabilitation patients.

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All authors declare that they have no conflicts of interest.

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Geriatrics; caregiver; care; elderly; rehabilitation; burden

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