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Saudi Journal of Kidney Diseases and Transplantation
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ORIGINAL ARTICLE Table of Contents   
Year : 2009  |  Volume : 20  |  Issue : 1  |  Page : 30-34
Burden among care-givers of kidney transplant recipients and its associated factors

1 Nephrology and Urology Research Center (NURC), Baqiyatallah University of Medical Sciences, Tehran, Iran
2 Dr Taheri Medical Research Group, Iranian Medical Point, Tehran, Iran

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Burden among care-givers of chronically ill patients has been widely investigated. However, there is no study evaluating perceived pressure on care-givers of kidney transplant recipients. This study aimed to evaluate the effect of care-giving to renal transplant recipients in Iranian Muslim population and to analyze factors associated with it. A cross-sectional study was carried out involving 41 care-givers of renal recipients. The Care-giver Burden Scale (CB Scale) was used to evaluate the care-giver's perceived burden and its correlates. Statistical analysis was performed using software SPSS v.13.0. P < 0.05 was considered significant. We found that increased care-giver burden was related to being married (p< 0.02), having lower education level (p< 0.05), and being a parent or spouse to the patient (p< 0.05). We also found significant adverse effects of patients' second transplantation and gender (male) on care-givers' burden. There was no significant relationship between care-giver burden score and patients' marital status, education level, operation time, age, donor type (cadaveric or living), and dialysis history before and after transplantation. In conclusion, care-givers experience strain, which has implications for research and service provision. Service providers need to identify those care-givers at risk of greater strain and help them in situations that cannot be altered. Future research should be conducted to identify the effects of interventions, on care-givers' burden perception.

Keywords: Caregiver burden, Family, Kidney transplant recipients, Perceived pressure

How to cite this article:
Einollahi B, Taheri S, Nemati E, Abbaszadeh S, Pourfarziani V, Nourbala MH. Burden among care-givers of kidney transplant recipients and its associated factors. Saudi J Kidney Dis Transpl 2009;20:30-4

How to cite this URL:
Einollahi B, Taheri S, Nemati E, Abbaszadeh S, Pourfarziani V, Nourbala MH. Burden among care-givers of kidney transplant recipients and its associated factors. Saudi J Kidney Dis Transpl [serial online] 2009 [cited 2023 Feb 9];20:30-4. Available from: https://www.sjkdt.org/text.asp?2009/20/1/30/44703

   Introduction Top

The physical and emotional status of family care-givers has the potential to influence the health, welfare and successful rehabilitation of persons with chronic illness. [1],[2] Studies on he­modialysis patients have demonstrated that some of the characteristics of care-givers con­tribute to the subjective well-being of the patients themselves and affect their ability to cope with the problem. [3],[4] For example, Chris­tensen et al found that the family support re­ceived by a patient on dialysis was a signi­ficant predictor of his/her ability to cope with the disease and survival, which was three times less in patients reporting a low level of family support. [5]

In view of the extensive co-ordination asso­ciated with care-giving, including symptom management, disability, mobility, and dre­ssings, it is perhaps not surprising that research has documented a variety of psychological sequelae among home-based givers of pallia­tive care. [6] Additionally, patient circumstances can have strong impact on the amount of care­givers' burden. [7]

The aim of this study is to evaluate the effects on care-givers of renal recipient pa­tients and to recognize factors and burdens that may impact upon both the physical and psy­chological health of the care-giver.

   Patients and Methods Top

We conducted a cross-sectional survey of pri­mary care-givers that attended the nephrology clinic at the Baqiyatallah Hospital in Tehran, Iran. Among 124 kidney transplant recipients, 94 had care-givers and 41 of these care-givers agreed to participate in the study.

The primary care-giver was defined as the main responsible and informed relative (or an otherwise close personal contact). The recog­nition of the care-giver was made with the patient's and the physician's acknowledgement.

In-person interviews were conducted to as­certain data on the care-givers' socio-demog­raphic characteristics, self-reported health status, support systems, and amount of assistance they provided to their patient. Patients' socio­demographic characteristics were also obtained.

Care-giver burden was measured using a 20­item subset of the Caregiver Burden (CB) Scale. [8] A Farsi translated version of the scale was used for this study.

   Results Top



There were 20 males (49%) and 21 females (51%). The mean age of the patients at the time of study was 40 ± 13.5 years (range: 13 to 73). Of the study subjects, 14 (34%) were employed, six (15%) were retired, four (10%) were students and 17 (41%) were unemployed; 32 (78%) were married; 37 (90%) were living in urban areas and 29 (72%) had an education level of high school or above.


The mean age of care-givers was 38 years (SD = 11.63) with a range of 17 - 68 years; there were 21 males and 22 females. Most of the care-givers were married (83.7%), living with their spouse and children (100%) and education level of high school and higher (70%).

Of the care-givers, 15 (36.5%) were spouses, 15 others (36.5%) were parents, seven (17%) were children and four (10%) were siblings. The average time the care-givers spent helping the transplant recipient was 10.5 ± 8.0 hours per day.

Activities of daily living

[Table 1] shows patient's dependence in acti­vities of daily living and care-giver's contri­bution, as well as their perceived pressure. Mean percentage of patients who needed help in each of their daily living activities was 62%. Care-givers contributed in 90% (81-98%) of patient's dependent activities and reported per­ceived burden in 19 ± 6% of each of the con­tributing daily activities. Higher dependence rate of patients in daily activities was signi­ficantly associated with higher levels of per­ceived burden by the care-givers (p< 0.005).

Patients' factors

There was no significant relationship between care-giver burden perception and patients' marital status, education level, operation time, age, donor type (cadaveric or living), being from urban or rural areas, and dialysis history before transplantation (p> 0.05). The cause of renal failure in the patient and dialysis history if any, after transplantation also was not re­lated to care-giver's burden perception (p> 0.05). Care-givers of patients with previous history of allograft rejection reported signifi­cantly more burdens (p< 0.009). We also found significant adverse impact of patient's gender (male) and history of re-transplantation on intensifying the care-givers' burden.

Care-givers' factors

For care-givers, being married (p= 0.01), ha­ving lower education level (p = < 0.05) and being a parent or spouse to the patient (p= 0.045) were significantly associated with the amount of burden the care-givers reported.

Health care services

The patient dependence to the care-giver was significantly reduced by use of a trained nurse at home (p < 0.02), more annual physician visits, and number of hospital admissions (p< 0.04).

   Discussion Top

Research on the informal care of disabled patients has been carried out in recent decades. Formal care refers to home help services and other types of care provided by the society at large, whereas informal care is provided by relatives. Previous studies have assessed care­givers' feelings of burden in many countries. Caring for another person can be experienced as being stressful, and informal care-givers pay an emotional, financial, and physical price for being perpetually on-call and having obli­gations to other family members and emplo­yers. Compared with non-care-givers, care­givers are more likely to have health problems and chronic conditions, need time off from work, and lack health insurance. [9]

There are good reasons to study these groups. Most Medicaid beneficiaries who have disabi­lities rely on informal care-givers for most of their assistance with personal care, and society relies on unpaid care-givers to help beneficia­ries live in the home or community as long as possible. The care-giver's motivation in taking responsibility and caring for another person may also have consequences for his/her own satisfaction, [10],[11] and their ability and willing­ness to give care appears to be mediated by their ability to find gratification and meaning in their role as care-giver. [12]

This study is a first attempt to investigate perceived burden and its correlates in care­givers of kidney transplant patients. We found that care-givers of kidney transplant patients contribute greatly to their relative patients' daily activities. Moreover, most of them did not report a significant feeling of pressure in any of the activities helping their relative patients.

Care-givers are not receiving support or ser­vices that might sustain them in long-term care-giving roles. Systems are needed that identify protective and risk factors among care-givers and to provide appropriate conti­nuing services in a proactive rather than crisis­responsive manner. In this study, we found that among different daily activities, staying with the patient and not leaving them alone, alongside shopping, induced the highest fee­ling of pressure. Moreover, a higher degree of patient's dependence to an individual activity significantly increased perceived burden in care-givers.

We found that use of a formal nurse signi­ficantly decreased perceived burden on the care-givers. However, most families cannot afford a paid care-giver, thus increasing emo­tional and financial strain; hence, society should provide enough support to informal care-givers. Caring for another person may have both posi­tive and negative consequences. It is specu­lated that sense of coherence is related to health, and how care-givers cope with this stress seems to influence their lives. Care­givers who do not find satisfaction in the care­giving and have a low sense of coherence, need support and intervention in order not to become worn out. [11],[13]

We do not know whether the non-participants differed significantly from the participants; it can be assumed that the care-givers who answered were those who were most interested and who were perhaps the healthiest ones. Furthermore, the instruments used in this study for assessing satisfaction, CB and health are not disease-specific, and they have been used in other studies for a variety of diagnoses.

   Conclusion Top

This study demonstrates that the role of care­giving can cause burden among kidney reci­pients' care-givers. This burden was associated with a variety of factors among this popu­lation. For example, we found that using a home nurse can reduce the patients' depen­dence on the care-giver. This finding helps us to support care-givers with higher burden scores and those who cannot pay for a home nurse. Knowing these factors can help us to prevent or lessen the strain on this altruistic group.

   Acknowledgement Top

Authors would like to gratefully acknowledge Prof. Guy Neild for his kind help in editing the article. We also thank Dr. Hamid Reza Khoddami Vishte and all who provided data for the study.

   References Top

1.Kelly AF, Hewson PH. Factors associated with recurrent hospitalization in chronically ill chil­dren and adolescents. J Paediatr Child Health 2000;36(1):13-8.  Back to cited text no. 1    
2.Bromley BE, Blacher J. Parental reasons for out-of-home placement of children with severe handicaps. Ment Retard 1991;29(5):275-80.  Back to cited text no. 2    
3.Belasco A, Barbosa D, Bettencourt AR, et al. Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dia­lysis. Am J Kidney Dis 2006;48(6):955-63.  Back to cited text no. 3    
4.Belasco AG, Sesso R. Burden and quality of life of caregivers for hemodialysis patients. Am J Kidney Dis 2002;39(4):805-12.  Back to cited text no. 4    
5.Christensen AJ, Wiebe JS, Smith TW, et al. Predictors of survival among hemodialysis pa­tients: Effect of perceived family support. Health Psychol 1994;13(6):521-5.  Back to cited text no. 5    
6.Langer SL, Rudd ME, Syrjala KL. Protective buffering and emotional desynchrony among spousal caregivers of cancer patients. Health Psychol 2007;26(5):635-43.  Back to cited text no. 6    
7.Razani J, Kakos B, Orieta-Barbalace C, et al. Predicting caregiver burden from daily func­tional abilities of patients with mild dementia. J Am Geriatr Soc 2007;55(9):1415-20.  Back to cited text no. 7    
8.Elmstahl S, Malmberg B, Annerstedt L. Care­giver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Arch Phys Med Rehabil 1996;77(2):177-82.  Back to cited text no. 8    
9.Ho A, Collins SR, Davis K, Doty MM. A look at working-age caregivers' roles, health con­cerns and need for support. Issue Brief (Commonw Fund) 2005;(854):1-12.  Back to cited text no. 9  [PUBMED]  
10.Grant G, Nolan M. Informal carers: Sources and concomitants of satisfaction. Health Soc Care 1993;1:147-59.  Back to cited text no. 10    
11.Andren S, Elmstahl S. Family caregivers' sub­jective experiences of satisfaction in dementia care: aspects of burden, subjective health and sense of coherence. Scand J Caring Sci 2005; 19(2):157-68.  Back to cited text no. 11    
12.Nolan M, Grant G. Regular respite: An evalua­tion of a hospital rota bed scheme for elderly people. Ace Books, Age Concern Institute of Gerontology Research Papers, London, UK: 1992.  Back to cited text no. 12    
13.Antonovsky A. Unraveling the Mysteries of Health. Jossey-Boss, San Francisco, USA: 1987.  Back to cited text no. 13    

Correspondence Address:
Behzad Einollahi
Nephrology and Urology Research Center, Baqiyatallah University of Medical Sciences, Mollasadra St, Vanak Square, Tehran
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Source of Support: None, Conflict of Interest: None

PMID: 19112216

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