A Study to Assess Care-Giver Burden and Quality of Life amongst Care-Givers of Patients Undergoing Periodic Haemodialysis

Ankan Paul^*, Lakshmi Prabha and Raj Kumar

^*Correspondence: Dr. Ankan Paul, Department of Psychiatry, Sree Balaji Medical College and Hospital, Tamil Nadu, Chennai, India, Email:

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Introduction

Chronic Kidney Disease (CKD) has emerged as a huge public challenge. It has not stopped at just that, but is slowly assuming catastrophic proportions. According to reliable estimates, the global prevalence of CKD. is about 850 million at this point in time [1]. The international society of nephrology states that the number of people requiring renal-replacement therapies is anywhere between 5.3-10.5 million. The most common renalreplacement therapy is “haemodialysis”, which according to conservative estimates is being offered to 3-4 million people worldwide [2]. About 130000 people undergo periodic haemodialysis in India alone and their number is increasing due to increased longevity and other factors. CKD is a complex condition to manage. It is important to understand that the effect of complexities in management of CKD patients undergoing periodic haemodialysis extend way beyond the patient and are expressed on their care-givers too [3]. “Caregiving” can be simply defined as providing help and support to someone in need of it. Although “health-professionals” are also care-givers in the truest sense, yet in general the term “care-giver” is reserved for non-professional or family care-givers. Here, “care” means spending significant amounts of energy and time to perform tasks that are physically, financially, emotionally and socially demanding. Care-giver burden encompasses the impact on physical, psychological, social, and financial well-being of the care-giver incurred due to caring for the patient [4].

Our study is focused on resolving this issue, by assessing the care-giver burden and quality of life in care-givers of patients undergoing haemodialysis and to bring forth the factors which affect them. We have also tried to find out the factors which lead to psychiatric morbidities in caregivers. We have also analysed the extent of correlation between care-giver burden, quality of life and psychiatric morbidities. We hope that our study would be of help to both health professionals and policy makers for formulating appropriate interventions for care-givers.

Materials and Methods

Study design: The study was designed as a cross-sectional study.

Study population: The study involved care-givers of the patients who were undergoing periodic haemodialysis at “department of nephrology, sree balaji medical college and hospital, Chennai”.

Sample size: Sample size=60.

Sampling criteria

Inclusion criteria

• Family care-givers of patients (close relatives who spend significant amount of time taking care of the patient) who are undergoing periodic haemodialysis.

• Care-givers with age more than 18 years, who willingly gave informed consent, were included in the study.

Exclusion criteria

• Care-givers known to be suffering from major chronic medical conditions like bronchial asthma, arthritis, cancer and cardiac disorders were excluded from the study.

• Care-givers with a previously diagnosed psychiatric disorder were excluded from the study.

Study methodology

The steps involved in conducting the study were as following:

• Approval for the study was obtained from “institutional human ethical committee”.

Age

• A pilot-study was carried out to assess feasibility of the study and to know about the requirements.

• Informed consent was obtained from willing participants.

• Data collection was done using data collection instruments.

• Statistical analysis of the data was performed.

• Results and interpretations are being expressed.

Instruments used

• Socio-demographic clinical preformat

• Zant Burden Interview (ZBI)

• WHO-Quality of Life BREF scale (WHO-QOL-BREF)

• Hamilton Rating Scale for Deprusion (HARF-D)

• Hamilton Anxiety Rating Scale (HARS)

Results

Socio-demographic analysis of study 0079 sample with respect to:

Table 1 shows the age wise description of study sample. 29 participants were in the age group of 45-60 years. 18. participants were aged between 25-<45 years. Minimum age of participants was 19 years and their maximum age was 82 years. Mean age of participants was 45.95 years.

Table 1: Age wise descriptive analysis of study sample.

Table 2 shows the care-giving period wise description of study sample. 31 participants had been care-givers for 0-5 years, whereas 23 participants had been care-givers for >5-10 years. 6 participants had care-giving period of >10 years. Minimum care-giving period among participants was 6 months and maximum care-giving period was 15 years. Mean care-giving period was 5.565 years. 18 participants had physical morbidities. Out of these 18 participants, 11 participants suffered from only diabetes mellitus; 3 participants were diagnosed with only hypertension; and 3 participants were both diabetic and hypertensive. 1 participant among the 18 participants with physical comorbidities was suffering from both diabetes mellitus and hypothyroidism.

Table 2: Care-giving period wise descriptive analysis of study sample.

Zarit Burden Interview (ZBI) based analysis of study sample with respect to:

Table 3 shows the gender-wise analysis of ZBI scores of study sample. Mean score for male participants was 47.636, whereas mean score for female participants was 46.763.

Table 3: Gender-wise analysis of ZBI scores of study sample.

Table 4 shows the gender-wise distribution of ZBI categories in study sample. 25 female participants fell in the category of moderate to severe burden compared to 14 male participants. 9 female participants scored in the category of severe burden compared to 6 male participants.

Table 4: Gender-wise distribution of ZBI categories in study sample.

No statistically significant association (p-value=0.806) was found between gender of participants and their distribution among ZBI categories.

Table 5 shows the age wise analysis of ZBI scores of study sample. Mean score was highest (50.344) for participants aged between 45-60 years, whereas it was lowest (39.000) for participants aged <25 years.

Table 5: Age wise analysis of ZBI scores of study sample.

Table 6 shows the age wise distribution of ZBI categories in study sample. 16 participants in age group of 45-60 years fell in the category of moderate to severe burden, whereas 14 participants aged between 25 ≤ 45 years scored in the same category. 12 participants aged between 45-60 years scored in the category of severe burden.

Table 6: Age wise distribution of ZBI categories in study sample.

Statistically significant association (p-value=0.014) was found between age of participants and their distribution among ZBI categories.

Table 7 shows the care-giving period wise analysis of ZBI scores of study sample. Mean score was highest (52.173) for participants with care-giving period of >5-10 years, whereas it was lowest (43.612) for participants with care-giving period of 0-5 years.

Table 7: Care-giving period wise analysis of ZBI scores of study sample.

Table 8 shows the care-giving period wise distribution of ZBI categories in study sample. 27 participants with caregiving period of 0-5 years fell in the category of moderate to severe burden, whereas 12 participants with caregiving period of >5-10 years scored in the category of severe burden.

Table 8: Care-giving period wise distribution of ZBI categories in study sample.

Statistically significant association (p-value=0.0005) was found between care-giving period of participants and their distribution among ZBI categories.

Table 9 shows the physical morbidities-wise analysis of ZBI scores of study sample. Mean score for participants who had physical morbidities was 48.388, whereas mean score for participants without physical morbidities was 46.523.

Table 9: Physical morbidities-wise analysis of ZBI scores of study sample.

Table 10 shows the physical morbidities wise distribution of ZBI categories in study sample. 15 participants with physical morbidities fell in category of moderate to severe burden, whereas 24 participants12 participants without physical morbidities fell in category of severe burden.

Table 10: Physical morbidities-wise distribution of ZBI categories in study sample.

Gender

without physical morbidities scored in the same category.

World Health Organisation-Quality of Life BREF (W.H.O.-QoL BREF) based analysis of study sample with respect to:

Table 11 shows the gender-wise analysis of W.H.O.-QoL BREF scores of study sample. Mean score for male participants was 63.318, whereas mean score for female participants was 56.473.

Table 11: Gender-wise analysis of W.H.O.-QoL BREF scores of study sample.

Table 12 shows the gender-wise distribution of W.H.O.- QoL BREF categories in study sample. 29 female participants scored in the category of ≤ 60/120 compared to 10 male participants. 9 female participants scored in the category of >60/120 compared to 12 male participants.

Table 12: Gender-wise distribution of W.H.O.-QoL BREF categories in study sample.

Statistically significant association (p-value=0.024) was found between gender of participants and their distribution among W.H.O.-QoL BREF categories.

Table 13 shows the age wise analysis of W.H.O.-QoL BREF scores of study sample. Mean score was highest (80.400) for participants aged <25 years, whereas it was lowest (51.103) for participants aged 45-60 years.

Table 13: Age wise analysis of W.H.O.-QoL BREF scores of study sample.

Table 14 shows the age wise distribution of W.H.O.-QoL BREF categories in study sample. 27 participants in age group of 45-60 years scored in the category of ≤ 60/120, whereas 9 participants aged between 25 ≤ 45 years scored in the same category. 2 participants aged between 45-60 years scored in the category of severe >60/120.

Table 14: Age wise distribution of W.H.O.-QoL BREF categories in study sample.

Statistically significant association (p-value=0.000004) was found between age of participants and their distribution among W.H.O.-QoL BREF categories.

Table 15 shows the care-giving period wise analysis of W.H.O.-QoL BREF scores of study sample. Mean score was highest (67.500) for participants with care-giving period of >10 years, whereas it was lowest (51.304) for participants with care-giving period of >5-10 years.

Table 15: Care-giving period wise analysis of W.H.O.-QoL BREF scores of study sample.

Table 16 shows the care-giving period wise distribution of W.H.O.-QoL BREF categories in study sample. 19 participants with care-giving period of >5-10 years scored in the category of ≤ 60/120, whereas 18 participants with care-giving period of 0-5 years scored in the same category. 13 participants with care-giving period of 0-5 years scored in the category of >60/120. Statistically significant association (p-value=0.039) was found between care-giving period of participants and their distribution among W.H.O.-QoL BREF categories.

Table 16: Care-giving period wise distribution of W.H.O.-QoL BREF categories in study sample.

Physical morbidities

Table 17 shows the physical morbidities-wise analysis of W.H.O.-QoL BREF scores of study sample. Mean score for participants who had physical morbidities was 53.500,whereas mean score for participants without physical morbidities was 61.333.

Table 17: Physical morbidities-wise analysis of W.H.O.-QoL BREF scores of study sample.

Table 18 shows the physical morbidities-wise distribution of W.H.O.-QoL BREF categories in study sample. 16 participants with physical morbidities scored in category of ≤ 60/120, whereas 23 participants without physical morbidities scored in the same category. 19 participants without physical morbidities scored in category of >60/120.

Table 18: Physical morbidities-wise distribution of W.H.O.-QoL BREF categories in study sample.

Statistically significant association (p-value=0.016) was found between presence or absence of physical morbidities in participants and their distribution among W.H.O.-QoL BREF categories.

Hamilton Depression Rating Scale (HDRS) based analysis of study sample with respect to:

Gender

Table 19 shows the gender-wise analysis of HDRS scores of study sample. Mean score for male participants was 5.954, whereas mean score for female participants was 8.815.

Table 19: Gender-wise analysis of HDRS scores of study sample.

Table 20 shows the gender-wise distribution of HDRS categories in study sample. 18 female participants fell in the category of mild depression compared to 4 male participants. 12 female participants scored in the category of normal compared to 15 male participants.

Table 20: Gender-wise distribution of HDRS categories in study sample.

Statistically significant association (p-value=0.022) was found between gender of participants and their distribution among HDRS categories.

Age

Table 21 shows the age wise analysis of HDRS scores of study sample. Mean score was highest (9.931) for participants aged between 45-60 years, whereas it was lowest (2.400) for participants aged <25 years.

Table 21: Age wise analysis of HDRS scores of study sample.

Table 22 shows the age wise distribution of HDRS categories in study sample. 13 participants in age group of 45-60 years fell in the category of mild depression, whereas 7 participants aged between 25 ≤ 45 years scored in the same category. 3 participants aged between 45-60 years scored in the category of severe depression.

Table 22: Age wise distribution of HDRS categories in study sample.

No statistically significant association (p-value=0.078) was found between age of participants and their distribution among HDRS categories.

Care-giving period

Table 23 shows the care-giving period wise analysis of HDRS scores of study sample. Mean score was highest (10.478) for participants with care-giving period of >5-10 years, whereas it was lowest (5.333) for participants with care-giving period of >10 years.

Table 23: Care-giving period wise analysis of HDRS scores of study sample.

Table 24 shows the care-giving period wise distribution of HDRS categories in study sample. 13 participants with care-giving period of 0-5 years fell in the category of mild depression, whereas 7 participants with care-giving period of >5-10 years scored in the same category. 6 participants with care-giving period of >5-10 years fell in category of moderate depression. No statistically significant association (p-value=0.078) was found between care-giving period of participants and their distribution among HDRS categories.

Table 24: Care-giving period wise distribution of HDRS categories in study sample.

Physical morbidities

Table 25 shows the physical morbidities-wise analysis of HDRS scores of study sample. Mean score for participants who had physical morbidities was 9.277, whereas mean score for participants without physical morbidities was 7.119.

Table 25: Physical morbidities-wise analysis of HDRS scores of study sample.

Table 26 shows the physical morbidities-wise distribution of HDRS categories in study sample. 12 participants with physical morbidities fell in category of mild depression, whereas 10 participants without physical morbidities scored in the same category. 24 participants without physical morbidities had normal scores.

Table 26: Physical morbidities-wise distribution of HDRS categories in study sample.

Statistically significant association (p-value=0.006) was found between presence or absence of physicalmorbidities in participants and their distribution among HDRS categories

Hamilton Anxiety Rating Scale (HARS) based analysis of study sample with respect to:

Gender

Table 27 shows the gender-wise analysis of HARS scores of study sample. Mean score for male participants was 12.045, whereas mean score for female participants was 19.131.

Table 27: Gender-wise analysis of HARS scores of study sample.

Table 28 shows the gender-wise distribution of HARS categories in study sample. 17 female participants fell in the category of moderate to severe anxiety compared to 2 male participants. 2 female participants scored in the category of severe anxiety.

Table 28: Gender-wise distribution of HARS categories in study sample.

Statistically significant association (p-value=0.006) was found between gender of participants and their distribution among HARS categories.

Age

Table 29 shows the age wise analysis of HARS scores of study sample. Mean score was highest (20.965) for participants aged between 45-60 years, whereas it was lowest (5.800) for participants aged <25 years.

Table 29: Age wise analysis of HARS scores of study sample.

Table 30 shows the age wise distribution of HARS categories in study sample. 8 participants in age group of 45-60 years fell in the category of mild to moderate anxiety, whereas 12 participants aged between 25 ≤ 45 years scored in the same category. 14 participants aged betssssween 45-60 years scored in the category of moderate to severe anxiety.

Table 30: Age wise distribution of HARS categories in study sample.

No statistically significant association (p-value=0.067) was found between age of participants and their distribution among HARS categories.

Care-giving period

Table 31 shows the care-giving period wise analysis of HARS scores of study sample. Mean score was highest (21.173) for participants with care-giving period of >5-10 years, whereas it was lowest (12.000) for participants with care-giving period of >10 years.

Table 31: Care-giving period wise analysis of HARS scores of study sample.

Table 32 shows the care-giving period wise distribution of HARS categories in study sample. 8 participants with care-giving period of 0-5 years fell in the category of moderate to severe anxiety, whereas 11 participants with care-giving period of >5-10 years scored in the same category. 2 participants with care-giving period of >5-10 years fell in category of severe anxiety. 19 participants with care-giving period of 0-5 years scored in category of no to mild anxiety.Statistically significant association (pvalue= 0.045) was found between care-giving period of participants and their distribution among HARS categories.

Table 32: Care-giving period wise distribution of HARS categories in study sample.

Physical morbidities

Table 33 shows the physical morbidities-wise analysis of HARS scores of study sample. Mean score for participants who had physical morbidities was 22.388, whereas mean score for participants without physical morbidities was 14.023.

Table 33: Physical morbidities-wise analysis of HARS scores of study sample.

Table 34 shows the physical morbidities-wise distribution of HARS categories in study sample. 10 participants with physical morbidities fell in category of moderate to severe anxiety, whereas 9 participants without physical morbidities scored in the same category. 6 participants without physical morbidities fell in category of mild to moderate anxiety. 26 participants without physical morbidities scored in category of no to mild anxiety.

Table 34: Physical morbidities-wise distribution of HARS categories in study sample.

Discussion

Our study sample consisted of 37% male participants and 63% female participants. The study by Nagarathnam,et al. had a sample with 84% of care-givers being females. This observation of majority of care-givers being of female gender was consistent with most other studies In the study by Joy, et al. 30% of participants had been in caregiving role for <1 year, whereas 36.70% of participants had been care-givers for a duration of 1-3 years [5]. 30% of care-givers suffered from one or more physical morbidities, whereas 70% of them had no physical morbidities [6]. In our study which is in accordance with a study done by Hoang, et al. 36.50% of participants had been suffering from chronic health conditions, while the study by Cagan, et al. reported that 45.39% of participants were suffering from at least one chronic health condition. Thus, socio-demographic description of the current study was in tune with previous studies, especially those that had been conducted in India [7].

A statistically significant strong negative correlation was established between W.H.O.-QOL BREF scores and HDRS scores (r=-0.896, p-value ≤ 0.000001). The study by Shukri, et al. reported comparable findings, where an inverse relationship was found between quality of life and presence of depression [8]. Thus, with decline in quality of life the extent of depression increases. This may be a reflection of effect of caregiver burden on quality of life. Mean ZBI scores was highest for participants aged 45-60 years (50.344) than those aged <25 years (39.000) significant association (p=0.014) was found between the age of participants and their distribution among ZBI categories. A statistically significant strong negative correlation was established between W.H.O.-QoL BREF scores and HARS scores (r=-0.852, p-value ≤ 0.000001). The study by Shukri, et al. presented similar findings, where an inverse relationship was observed between quality of life and presence of anxiety. Thus, with decline in quality of life the extent of anxiety increases [9]. This may be a reflection of effect of caregiver burden on quality of life. Thus, status of mental health is deteriorated with decline in quality of life. This could be caused due to the effect of caregiver burden on quality of life

Conclusion

Excess caregiver burden causes deterioration in quality of life of the care-giver, which causes depression and anxiety in them. Hence, the care-giver needs to be provided with proper social support and education regarding coping skills. A multi-faceted approach would be required to improve the quality of life of care-givers, which in turn would improve quality of life of patients.

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