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Assessment of caregiver burden of patients receiving dialysis treatment in Rawalpindi.

Byline: Hassan Bin Usman Shah, Iffat Atif, Farah Rashid, Muhammad Waleed Babar, Faizan Arshad, Waqar Qamar, Owais Ahmed Khan and Muhammad Luqman Qadir


Objective: To determine the burden on the caregivers of patients receiving dialysis treatment.

Methods: This cross-sectional study was carried out in four different dialysis centres of Rawalpindi, Pakistan, from June 1 to December1, 2015, and comprised attendants of patients receiving dialysis. The data was collected from the attendants of patients receiving dialysis, and caregiver burden was measured using the Zarit Burden Interview questionnaire. SPSS 22 was used for data analysis.

Results: Of the 164 subjects, 97(59%) were females. The majority of caregivers reported stress for caring (2.28+-1.31), patients asking for more help than needed (2.14+-1.13), health problems (1.03+-1.11), financial constraints (1.70+-1.15) and little time for self-care (2.15+-1.21). Besides, 107(65%) caregivers perceived the burden of their patients as mild to moderate. A positive correlation was found between the duration of a person on dialysis, daily hours of care-giving and the total burden score of his/her caregiver (p<0.05 each).

Conclusion: Care-giving can create enormous burdens on caregivers, affecting their physical and psychological health.

Keywords: Caregiver burden, Patients, Dialysis, Zarit burden interview. (JPMA 67: 1498; 2017)


The patients with end-stage renal disease (ESRD) require dialysis, which has become an established mainstay for its treatment since 1960s.1 This procedure is repeated lifelong, twice or thrice a week depending upon condition of the patient and, hence, this is a tiresome activity for patient as well as for the family requiring endless contribution by caregivers.1,2

The patients with ESRD often rely on informal caregivers to help them with their everyday living and medical needs, including administration of medicines, driving the patient to hospital for dialysis and routine/emergency check-ups, maintenance of personal hygiene and appropriate renal diet.3-5 These unpaid caregivers are usually family members or friends, especially in Pakistan who also provide regular emotional and psychosocial support owing to cultural and traditional values for caring of the sick.6-10

These informal caregivers can experience stress, depression, restlessness and poor quality of life.5-7,11 The burden is multidimensional bio-psychosocial reaction, determined by financial status of the family, time available to look after the patient, compromising personal time, physical health, social life and emotional strain.4,6,8,11 The caregiver burden is relatively less in developed countries such as the United States, United Kingdom and Australia because of the availability of formal or paid caregiver.12-15 In Pakistan, it has been estimated that only 40% of patients with ESRD have access to dialysis, and out of these, 67% are under dialysed becoming lifelong burden and constant source of stress for the caregivers.13,14,16

The present study was conducted to assess the care giver burden of dialysis patients and its consequences on the quality of life.

Subjects and Methods

This cross-sectional study was carried out in different dialysis centres of public and private hospitals and healthcare centres of Rawalpindi, Pakistan, from June 1to December1, 2015, and comprised attendants of patients receiving dialysis. The hospitals and centres in the survey were the Kidney Centre, Benazir Bhutto Hospital, District Headquarters (DHQ) Hospital and Rawalpindi Eye Donors Organisation (REDO). There were more than 10 dialysis centres in Rawalpindi. We selected randomly only those having more than 5 dialysis machines and where dialysis was done in two or more shifts. Some hospitals fulfilling the criteria did not give permission for data collection (two armed forces institutes and two private set-ups). The data was collected from 164 attendants (immediate family members like spouse, children and parents)of dialysis patients selected through non-probability consecutive sampling technique.

The sample size was calculated using 14%3,8 expected family burden at 6% margin of error and 95% confidence level using World Health Organisation's (WHO) sample size calculator. Researchers approached 186 attendants at the time when their patients were undergoing dialysis. Some of them refused to give data, while the rest were not the immediate family members. The informal caregivers of patients receiving dialysis therapy for more than 5 months,(studies show that mostly it takes more than 2-3 months for the caregiver to feel the burden2,3,7) irrespective of age and gender were included in the study. Pushto speaking patients/attendants from KPK, who did not understand Urdu were excluded from the study.

Information was obtained through direct interview using local language from the attendants and standardised questionnaires were filled in by the researchers using the Zarit Burden Interview (ZBI).17 The ZBI scale was used to measure burden among caregivers because of high reliability and validity.15,16 The burden interview is scored by summing the responses of the individual items. The score range is from 0 to 88 and higher scores indicate greater caregiver distress. Data analysis was done using SPSS 22. Total scores with mean and standard deviation were calculated. Chi-square was used to establish relationship between socio-economic class, type of dialysis facility, patient functional dependency and total burden. Correlation test was applied to ascertain association between years on dialysis, daily hours of care giving and total burden on caregivers.

The level of subjective burden was determined according to the following scoring:

(0-20) no burden to little burden,

(21-40) mild to moderate,

(41 to 60) moderate to severe burden and

(61 to 88) severe burden

Informed consent was taken from all participants. No financial incentives were offered to the study participants. Permission was also taken from respective hospital's administration and ethics review board of Yusra Medical and Dental College.


Of the 186 attendants approached, 164(88.2%) were included. The overall mean age was 45+-11.23 years. Moreover, 97(59%) participants were female. The mean duration of patients on dialysis was 2.2+-0.96 years. The overall burden score was 31.39+-12.31.(Table).

Table: ZB interview scores of individual questions.

Q no.###ZBI items###Mean +- SD

1###Asking for more help than needed###2.14 +- 1.13

2###Not enough time for my self###2.15 +- 1.21

3###Stressed for caring and other responsibilities###2.28 +- 1.31

4###Embarrassment over relative's behaviour###1.67 +- 1.30

5###Angry###0.98 +- 1.17

6###Negative relationship###2.13 +- 1.16

7###Afraid about the future###1.31 +- 1.32

8###Relative's dependence on you?###2.33 +- 0.73

9###Strained by relative?###1.43 +- 1.13

10###Health decrease?###1.03 +- 1.11

11###Lack of privacy###0.99 +- 1.19

12###Lack of social life?###1.35 +- 1.10

13###Feel uncomfortable having friends over###0.56 +- 0.94

14###Expecting to be cared by you?###1.70 +- 1.17

15###Lack of enough money to pay for the expenses###1.70 +- 1.15

16###Unable to care much longer?###1.60 +- 1.19

17###Lost control of life?###0.75 +- 1.09

18###Leave the care to someone else?###0.48 +- 0.96

19###Uncertain about what to do?###1.16 +- 1.11

20###Should do more for my relative###1.73 +- 1.17

21###Could do a better caring job###1.88 +- 1.12

22###Overall feeling of burden###1.83 +- 1.26

###Total Burden score###31.39 +- 12.31

Besides, 107(65%) caregivers were having mild to moderate burden, whereas 21(13%) had moderate to severe burden while providing care to their family members.(Figure).

The use of government health facility for dialysis patients was usually seen in the lower and middle social class (which was divided in low socio-economic status keeping in view the government's new laid-down minimum pay scale of Rs15,000/month or below),while patients of high social class preferred private set-ups (p<0.001).

The association was also determined between total burden score and socio-economic class, dialysis done in government or private facility and patient functional dependency. It was established that caregivers belonging to low socio class had moderate to severe burden (p<0.001). Caregivers of the patients coming to government hospitals for dialysis showed more burden (p=0.031), main reason being low socio-economic class. Patients who needed less assistance in their daily life, their attendants had lower burden as compared to patients who needed more assistance (p<0.001).

The informal caregivers mainly included spouses 112(68%), children 43(26%) and relatives 10(6%) looking after their patients on dialysis. It was seen that all of them had mild to moderate burden of taking care of their patients. A strong positive correlation of 0.82 (p<0.001) was found between the number of years a person is on dialysis and the total burden score of his/her caregiver. Similarly, a weak but positive correlation of 0.30 was found between daily hours of care giving and the total burden score (p JSZMC 2015; 6: 853-6.

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18. Khan MN, Akhter MS, Ayub M, Alam S, Laghari NU. Translation and validation of quality of life scale, the brief version. J Coll Physicians Surg Pak 2003; 13: 98-100.

19. Christensen AJ, Ehlers SL. Psychological factors in end-stage renal disease: an emerging context for behavioral medicine research. J Consulting Clin Psychol 2002; 70: 712-24.

20. Rutkowski B, Rychlik I. Daily hemodialysis and caregivers burden. Nephrol Dial Transplant 2011; 26: 2074-6.

21. Morimoto T, Schreiner AS, Asano H. Perceptions of burden among family caregivers of post-stroke elderly in Japan. Int J Rehab Res 2001; 24: 221-6.

22. Morimoto T, Schreiner AS, Asano H. Caregiver burden and health?related quality of life among Japanese stroke caregivers. Age Ageing 2003; 32: 218-23.

23. Yates ME, Tennstedt S, Chang BH. Contributors to and mediators of psychological well-being for informal caregivers. J Gerontol B Psychol Sci Soc Sci 1999; 54: 12-22.

24. Gayomali C, Sutherland S, Finkelstein FO. The challenge for the caregiver of the patient with chronic kidney disease. Nephrol Dial Transplant 2008; 23: 3749-51.

25. Warady BA, Chadha V. Chronic kidney disease in children: the global perspective. Pead Nephrol 2007; 22: 1999-2009.
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Publication:Journal of Pakistan Medical Association
Geographic Code:9PAKI
Date:Oct 31, 2017
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