http://doi.org/10.33698/NRF0144 –  Rajesh Kumar, Ruche Saini

Abstract: Chronic illness of a family member is an objective stressor that results in strain for the caregiver or relative because of the difficult tasks of caring for that person and is likely to affect both the physical and mental health of caregiver. A descriptive study was thus undertaken to assess the extent and pattern of burden among caregivers and to identify the coping strategies used by them at Institute of Human Behviour and Allied Sciences (IHBAS), New Delhi. Using convenience sampling technique, 32 relatives/caregivers were interviewed using semi-structured “Family Burden Interview Schedule (FBIS)” and “Coping Checklist (CCL)”. Findings of the study revealed that the caregivers experience moderate amount of burden. The amount of burden experienced was found to be significantly associated with the gender of the caregivers. More often, caregivers adopt positive cognitive coping strategies followed by distraction and problem-solving to overcome burden due to patient’s illness. Though small sample size was the major limitation of the study yet it offers useful implications in planning nursing interventions to improve the quality of life of caregivers while providing nursing care to mentally-ill patients.

Key Words

Caregivers, Mentally-ill patients, Burden

Correspondence at : Rajesh Kumar

Lecturer, Mental Health Nursing (INC PhD Scholar)

SGRD College of Nursing, Vallah, Amritsar (Pb)

Introduction

With the rise of community psychiatry, one social parameter which has received some attention is the burden of care of psychiatric patients on caregivers. Burden of care has been defined as “the presence of problems, difficulties or adverse events which affect the life (lives) of the psychiatric patient’s significant other(s)1. These occur as a result of challenges involved in caring for the mentally-ill patients. Burden of care affects family’s daily routine, caregiver’s emotional, psychological and physical health2 and has economic implications in addition to distressing notions such as shame, embarrassment, feelings of guilt and self blame3.

The caregiver is usually a relative of an ill-person and the care given is invariable continuous. He or she often has additional responsibilities in the family and many of the care recipients do not acknowledge or even recognize the assistance and help they are receiving. The care is given because of emotional bonding, duty, guilt and/or the lack of other available services in the community4. Dimensions of burden of care giving include the symptom-specific burden impact of the disability associated with the illness itself, both in terms of the demands for assistance and supervision, and regarding the potential stigma associated with the illness; the social burden impact on family and other social relationships; the   emotional burden impact on mental and emotional well-being; and the financial costs of care giving4.

Since the burden has been found to be dependent on the characteristics of the people with mental illnesses and their caregivers, the relationship between them, and their environment5; hyperactivity, irritability, sadness and withdrawal in people with mental illness have been reported to be perceived as the most distressing behaviors by the caregivers, affecting their emotional health and life in general6. Thus, it is important to assess various characteristics of caregivers’ burden and its adverse effects on care giving, so that appropriate actions can be taken to manage the problem.

It is also important to understand caregiver’s coping strategies for tackling burden, because it affects not only caregiver’s day-to-day functioning and is a constant source of stress, but how this stress is managed also has a bearing on the course of person’s illness and prospects for improvement7. If maladaptive coping styles are identified, caregivers can be helped to adopt healthier coping styles, so as to continue in a healthy care giving role.

The current study was thus aimed to determine the extent of burden among caregivers of mentally-ill patients, its pattern under the domains of financial, disruption of routine family activities, family leisure and interaction and effect on their physical and mental health; demographic characteristics’ of caregivers associated with burden and to identify the coping strategies used by them to overcome burden at Institute of Human Behavior and Allied Sciences (IHBAS), New Delhi.

Material and Methods

The study was conducted in the month of May, 2011 at Institute of Human Behavior and Allied Sciences (IHBAS), New Delhi. The IHBAS is central government hospital funded by ministry with 181 total staff strength and 336 beds capacity. It caters to patients from the lower and lower-middle socio-economic strata of the population. Hospital provide services for depression, obsessive compulsive disorder, bipolar illness, post partum psychosis, dementia, dissociative disorders, and co-morbid substance abuse. Mental retardation and children with anxiety, depression, hyperactivity disorders, enuresis, learning disability and other developmental disorders are also dealt in community clinics. The patients are mostly accompanied by their family members, who were also the caregivers.

The study population comprised of the caregivers accompanying the patients at out-patients and in-patient departments. Inclusion criteria included healthy adult caregiver aged 18 years or more and staying with the patient currently and at least for last one year while caregivers who refuse to participate in study and families with another family member (other than patient) with a psychiatric or chronic physical illness were excluded from the study. Using convenience sampling technique, 32 caregivers of patients attending out-patient depar tment and admitted in the hospital were included in the study. The tools used for data collection were: Demographic Profile Sheet, Family Burden Interview Schedule and Coping Checklist.

Demographic Profile Sheet: It contained items related to the personal characteristics of caregivers such as age, gender, marital status, educational qualifications, occupation, monthly income, domicile, locality and duration of illness of patient, hospitalization status of patient and duration of hospitalization.

The  Family  Burden  Interview  Schedule (FBIS):  The  semi-structured  interview schedule developed by Pai and Kapur (1981, 1982)8,9 was used in the study. It has 24 items grouped under 6 areas of burden: (i) Financial Burden,  (ii)  Disruption  of  Family  Routine Activities, (iii) Disruption of Family Leisure, (iv) Disruption of Interaction, (v) Effect on Physical Health of others, (vi) Effect on Mental Health of the others. Each item is rated on a 3-point scale- 0= No Burden, 1=Moderate Burden and 2=Severe Burden. In order to make tool appropriate  for  the  study,  one  item  was deleted from the tool after critical discussion with experts. The final tool had 23 items and total score of 46.

 (iii) Coping Checklist (CCL): The coping checklist (CCL) of Rao, Subbakrishna and Prabhu (1989)10 was used in the study. It is a comprehensive list of 70 items which has been grouped under 9 categories: (i) Positive Cognitive, (ii) Negative Cognitive, (iii) Problem- solving, (iv)Distraction, (v) Magical  Thinking, (vi) Avoidance, (vii) Religious, (viii) Help- Seeking, (ix) External Attribution. It is a brad version of behavioral, emotional and cognitive responses that may be used to handle stress. Items such as thinking over the problem again and again, looking on the bright side of things and looking forward for the best thing to happen are included in ‘positive cognitive’ coping strategies; walking away to the peaceful place, using alcohol, smoking and other mood-elevating drugs and listening to music and watching television come under distraction and discussing the problem with family member or friend, identifying solutions to problems and solving the problem reflect problem-solving strategies. Items such as feeling hopeless are included in negative coping; magical thinking include items such as wearing a lucky charm or amulet; avoidance such as trying to forget about the whole thing; being religious such as visiting a place of worship and organizing poojas and adopting help-seeking behaviors such as seeking assurance from friends and family members. Items of external attribution are blaming own fate and holding other people responsible for the situation.

Items are scored dichotomously (Yes/ No) indicative of the presence or absence of a particular coping behavior. The validity of the scale was established through expert opinion in the field of nursing and psychiatry. The Cronbach alpha came out to be 0.864 which was checked by interviewing 10 subjects.

The permission for data collection was obtained from the competent authorities in the Institute. After screening the subjects for the study, an informed verbal consent was obtained from the study subjects. After filling the demographic profile sheet, the caregivers were interviewed using FBIS to assess the extent of burden experienced by them due to patient’s illness and CCL to identify the type of coping strategies used by them to tackle burden. The interview schedule took around 30 minutes. Anonymity & confidentiality of the subjects was maintained during the study and they were given full autonomy to withdraw from the study at any time. The data was then transferred into SPSS 15.0 Evaluation Version and was analyzed using descriptive and inferential statistics.

 Results

As per socio demographic profile of subjects it was observed that two third of the study subjects were females (65.6%), most of them were married (87.5%) and aged more than 30 years (84.4%). Around 65% of the caregivers lived in urban area and more than half were from North India (53%). About 34% of the caregivers possessed education up to matric. While half (50%) of the caregivers were working, around 62% of them earned less than Rs. 10,000 per month. When patient’s profile was considered, around 62% of the patient’s were admitted in the hospital for less than 3 months while 60% of them were suffering from mental illnesses for more than 6 months.

Extent of Burden

Table 1 shows the extent of burden perceived by the caregivers of mentally-ill patients. The mean burden score was 58.22 + 20.79. It was found that 43.8% caregivers perceived moderate burden and 31.3% of the caregivers experienced severe and 25% experinced low burden. (Table-1) When the extent of burden was compared with the socio-demographic characteristics of the caregivers, the sex of the caregivers was found to be significantly associated (7.81, df=2, p=0.02*) with the amount of burden perceived by caregivers with females experiencing more burden as compared to males. However, age, marital status, education, occupation, monthly

Table 1: Extent of Burden experienced by caregivers of mentally-ill patients

income, domicile, locality of caregivers and duration of patient’s illness, his/her

 

                                                                           hospitalization status and duration of

 

Low Burden 8 (25.0)
Moderate Burden 14 (43.8)
Severe Burden 10 (31.2)

 

Extent of Burden                                  n(%)

hospitalization did not show any significant association with the amount of burden perceived by the caregivers of mentally-ill patients (Table 2).

Table 2: Socio-demographic Characteristics and Extent of Burden among caregivers (N=32)

Item, Total No Burden Moderate Burden Severe Burden Chi-square
  n(%) n(%) n(%) n(%) value, p-value
Age          
< 30 Yrs. 05(15.6) 02 (25) 02 (14.3) 01 (10.0) 0.79, df=2
> 30 Yrs. 27(84.4) 06 (75) 12 (85.7) 09 (90.0) 0.67
Sex          
Male 11 (34.4) 06 (75.0) 03 (21.4) 02 (20.0) 7.81, df=2
Female 21 (65.6) 02 (25.0) 11 (78.6) 08 (80.0) 0.02*
Marital Status          
Single 04 (12.5) 01 (12.5) 02 (14.3) 01 (10.0) 0.11, df=2
Married 28 (87.5) 07 (87.5) 12 (85.7) 09 (90.0) 0.95
Domicile          
North India 17 (53.1) 04 (50.0) 07 (50.0) 06 (60.0) 0.28, df=2
Others 15 (46.9) 04 (50.0) 07 (50.0) 04 (40.0) 0.87
Locality          
Urban 21 (65.6) 05 (62.5) 11 (78.6) 05 (50.0) 2.14,df=2
Rural 11 (34.4) 03 (37.5) 03 (21.4) 05 (50.0) 0.34
Education          
Illiterate 11 (34.4) 01 (12.5) 05 (35.8) 05 (50.0) 7.87, df=4
Upto 10th 11 (34.4) 03 (37.5) 03 (21.4) 05 (50.0) 0.10
Professional 10 (31.2) 04 (50.0) 06 (42.8) 00 (00.0)  
Occupation          
Working 16 (50.0) 06 (75.0) 05 (35.7) 05 (50.0) 3.14, df=2
Not-Working 16 (50.0) 02 (25.0) 09 (64.3) 05 (50.0) 0.21
Monthly Income          
<10,000 20 (62.5) 04 (50.0) 07 (50.0) 09 (90.0) 4.69, df=2
>10,000 12 (37.5) 04 (50.0) 07 (50.0) 01 (10.0) 0.95
Duration of Patien

< 6 Month

t illness

13 (40.6)

 

03 (37.5)

 

06 (42.9)

 

04 (40.0)

 

0.06, df=2

> 6 Month 19 (59.4) 05 (62.5) 08 (57.1) 06 (60.0) 0.97
Hospitalization status

OPD                   12 (37.5)

03 (37.5) 06 (42.9) 03 (30.0) 0.42, df=2
IPD 20 (62.5) 05 (62.5) 08 (57.1) 07 (70.0) 0.81
Duration of Hospi

< 3 Months

talization

22 (68.8)

05 (62.5) 09 (64.3) 08 (80.0) 0.87, df=2 > 3
Months 10 (31.2) 03 (37.5) 05 (35.7) 02 (20.0) 0.65

p*<0.05, significant

Pattern of Burden

The pattern of burden experienced by the caregivers under six domains i.e. financial burden, disruption of routine family activities, disruption of interaction effect on disruption of family leisure, physical and mental health due to care giving tasks carried out for patient. When the pattern of burden was observed at item level under six domains (Table 3), 37.5% of caregivers reported sever burden financial burden due to loss of patient’s income expenses incurred on patient’s illness as the most frequent cause of financial burden Another 21.9% reported severe financial burden as they have loans and saving is spent.

Severe burden in relation to disruption of routine activities was due to patients behaviour disrupting activities as reported by 46.9% caregivers. Another cause of severe burden in this regard was reported by 40.6% care givers was due to patient not helping in house hold work and disruption of activities of other of other family members. However 28.1% reported severe burden as patient not going to work, school, college etc. and neglect of rest of family due to patients illness.

Severe burden in relation to disruption of family leisure was due to patients illness using up other person’s holidays and leisure time as reported by 31.3% caregivers. While another 28.5% reported severe burden due to stopping of normal recreation activities and patient’s lack of attention to other family members and children. In relation to disruption of interaction severe burden was reported was reported by 31.3% caregivers due to ill effects of general atmosphere in house and members get into arguments over this. While 21.9% reported severe burden as patients illness affects relationship within and outside the family.

Very few caregivers reported severe effects on physical and mental health of other family members i.e. 12.5% caregivers suffers physical illness due to patients behaviour and 18.8% reported severe burden as family members lost sleep, become depressed or weepy or irritable.

Coping Strategies

Coping checklist was administered to the caregivers to identify the type of coping strategies used by them to tackle burden. They It was seen that maximum mean score of coping stratgies used by caregivers was of ‘positive cognitive’ coping strategies [Mean=6 + 2.06]. It was followed by distraction

Table 3: Item-wise analysis of the pattern of burden under six domains

 

DOMAIN OF BURDEN No Burden n(%) Moderate Burden n(%) Severe Burden n(%)
FINANCIAL BURDEN      
Loss of patient’s income, 16 (50.0) 04 (12.5) 12 (37.5)
Loss of income of any other member of the family due to patient’s illness, 18 (56.3) 10 (31.3) 04 (12.5)
Expenditure incurred due to patient’s illness and treatment, 05 (15.6) 15 (46.9) 12 (37.5)
Expenditure incurred due to extra arrangement, 23 (71.9) 03 (09.4) 06 (18.8)
Loans taken or saving spent, 23 (71.9) 02 (06.3) 07 (21.9)
Any other planned activity put off because of the financial pressure , 22 (68.8) 07 (21.9) 03 (09.4)
DISRUPTION OF ROUTINE FAMILY ACTIVITES      
Patient not going to work, school, college etc., 15 (46.9) 08 (25.0) 09 (28.1)
Patient not helping in the household work, 05 (15.6) 14 (43.8) 13 (40.6)
Disruption of the activities of other family members, 04 (12.5) 15 (46.9) 13 (40.6)
Patient behavior disrupting activity, 08 (25.0) 09 (28.1) 15 (46.9)
Neglect of the rest of the family due to patient’s illness, 08 (25.0) 15 (46.9) 09 (28.1)
DISRUPTION OF FAMILY LEISURE      
Stopping of normal recreational activities, 03 (09.4) 20 (62.5) 09 (28.1)
Patient’s illness using up another person’s holiday & leisure time, 09 (28.1) 13 (40.6) 10 (31.3)
Patient lack of attention to other family members such as children, 04 (12.5) 19 (59.4) 09 (28.1)
Dropping off other leisure activity due to patient’s illness & incapacity, 07 (21.9) 17 (53.1) 08 (25.0)
DISRUPTION OF THE INTERACTION      
Any ill effect on the general atmosphere in the house, 07 (21.9) 15 (46.9) 10 (31.3)
Do the other members get in to arguments over this, 06 (18.8) 16 (50.0) 10 (31.3)
Patient’s illness affecting relationships within and outside the family, 09 (28.1) 16 (50.0) 07 (21.9)
EFFECT ON PHYSICAL HEALTH OF THE FAMILY      
Any other family members suffers physical illness due to patient’s behavior, 14 (43.8) 14 (43.8) 04 (12.5)
Any adverse effect on health of family member such as losing weight etc., 17 (53.1) 14 (43.8) 01 (03.1)
EFFECT ON MENTAL HEALTH OF OTHERS      
Family member seeking help psychological illness brought by patient’s behavior, 20 (62.5) 10 (31.3) 02 (06.3)
Family member lost sleep, become depressed or weepy or irritable, 14 (43.8) 12 (37.5) 06 (18.8)

[Mean=5.56 + 4.16] and problem-solving strategies [Mean=5.03 + 1.40] used by caregivers which includes discussing the problem with family member or friend, identifying couple of solutions to problems and solving the problem one by one. Other coping strategies used by them include negative coping, magical thinking, avoidance, being religious and adopting help-seeking behaviors. The least coping strategies used by caregivers include external attribution [Mean=0.78 + 0.61] such as blaming own’s fate and holding other people responsible for the situation (Fig.1).

The type of coping strategies adopted by the caregivers was compared with the mean score of burden experienced by the caregivers did not show any significant relationship i.e. the type of coping strategies

6

 

5

 

4

 

3

 

2

 

1

 

0

Coping Strategies

Fig.1 Coping Strategies used by caregivers

adopted by the caregivers did not affect the amount of burden experienced by them due to patient’s illness (Table 4).

 

  No Burden Moderate Burden Severe Burden p-value
Positive Cognitive 6.38,2.56 5.36, 2.17 6.60, 1.27 0.300
Negative Cognitive 1.00,1.41 1.71, 0.91 1.60, 0.84 0.295
Problem Solving 5.13,2.10 5.29, 0.99 4.60, 1.27 0.501
Distraction 6.38,6.09 5.03, 3.71 5.30, 3.16 0.825
Magical Thinking 2.25,2.05 2.86, 1.10 3.60, 0.97 0.125
Avoidance 2.00,1.85 1.57, 1.02 1.40, 0.84 0.581
Religious 3.63,1.51 3.43, 1.45 3.70, 1.16 0.884
Help-Seeking 2.75,1.04 2.79, 0.89 2.40, 0.52 0.510
External Attribution 0.50,0.76 0.86, 0.54 0.90, 0.57 0.325

 

Table 4: Comparative Analysis of the Extent of Burden & Coping Strategies Coping Strategies                                                

Mean, SD Score of the Caregiver Burden  ANOVA

p*<0.05, significant

Discussion

The current study revealed the moderate amount of burden experienced by the caregivers of mentally-ill patient. The findings of the study were found to be consistent with the findings of Chakrabarti et al11 study of family burden of neurosis which reported 80% of the caregivers with moderate amount of burden with only 19% falling experiencing severe burden to patient’s illness. The financial burden was found to be more contributing to the overall burden experienced by the caregivers followed by disruption in routine family activities and interaction with other family members which was found consistent with the Chakrabarti et al12 study of comparison of the extent and pattern of family burden among affective disorders and schizophrenia which reported more burden experienced under the areas of family routine, family leisure, family interaction and finances. The study also revealed the least burden in the areas of physical and mental health. Thomas et al while assessing the psychosocial dysfunction and family burden in Schizophrenia and Obsessive-compulsive disorder also reported least burden in the areas of physical and mental health13.

The study also reported that the females experienced significantly more burden as compared to male while age, marital status, education, occupation, monthly income, domicile, locality of caregivers and duration of patient’s illness, his/her hospitalization status and duration of hospitalization did not have any significant association with the amount of burden perceived by the caregivers of mentally-ill patients. The findings of the study were found to non-consistent with the Chakrabarti et al12 findings which reported duration of illness of patient significantly associated with the amount of burden perceived by caregivers. It also reported that the age, sex, marital status, education of the caregiver, employment status of the patient, family type and resident did not show consistent correlation with the extent of burden.

The current study reported that more often, caregivers adopt positive cognitive coping strategies followed by distraction and problem-solving to overcome burden due to patient’s illness. It was also found that external attribution such as blaming own fate and holding other people responsible for the situation were among the least used coping strategies used by caregivers. The study also revealed that the type of coping strategies used was not associated with the extent of burden which was inconsistent with the findings of Scazufca et al14 who reported a positive correlation between caregiver burden and use of avoidance as a coping strategy.

Thus study concluded that caregivers experience moderate amount of burden and they used positive cognitive coping strategies more frequently followed by distraction and problem-solving to overcome burden due to patient’s illness. Though small sample size was the major limitation of the study yet it offers useful implications in planning nursing interventions to improve the quality of life of caregivers while providing nursing care to mentally-ill patients.

The need of education, advice, information, counseling, motivation are essential for most of the care givers especially of mentally ill clients having higher level of intensity of burden. If appropriate precautions are not taken in time, the care giver’s stress level will go high and there may be a real danger to the both physical and mental health of the care givers that they may suffer from any illness very soon. Various tips are given to the care givers to balance their critically important care giving role with their own health and wellbeing. Emphasis should be laid on prevention, early diagnosis and prompt treatment of mental illness. Communities should be educated about the nature of mental illness and attempt should be taken to reduce stigma. Clinicians should also pay attention to the needs of caregivers of patients with mental illness.

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