INTRODUCTION:

“One person caring about another represents life’s greatest value”

- Jim Rohn

Cerebrovascular accident (CVA) or stroke is the rapid loss of brain function due to disturbance in the blood supply to the brain. This can be due to ischemia caused by blockage or a haemorrhage. As a result, the affected area of the brain cannot function, which might result in an inability to move one or more limbs on one side of the body. It is a medical emergency and causes permanent neurological damage, complications and death.¹

Hippocrates first described the sudden paralysis that is often associated with stroke. Episodes of stroke and familial stroke have been reported from the second millennium BC onward in ancient Mesopotamia and Persia. The WHO clinically defines stroke as the rapid development of clinical signs and symptoms of a focal neurological disturbance lasting more than 24 hours or leading to death with no apparent cause other than vascular origin.²

Strokes can be classified into two major categories: ischemic and haemorrhagic. Ischemic strokes are those that are caused by interruption of the blood supply, while haemorrhagic strokes are the ones which result from rupture of a blood vessel or an abnormal vascular structure. About 87% of strokes are caused by ischemia and the remaining by haemorrhage.²

Stroke is a global health problem. It is the second commonest cause of death and fourth leading cause of disability worldwide.³ According to World Health Organization (WHO), 15 million people suffer stroke worldwide each year. Of these 5 million die and another 5 million are permanently disabled. Medical research estimated that there were 9.3 lakh cases of stroke and 6.4 lakh deaths in India. Around 1,174 CVA cases were reported in Bangalore. By 2015, India will report 1.6 million cases of CVA annually, at least one third of whom will be disabled.⁴

The Indian National Commission on Macro-economics and Health estimated that the number of strokes will increase from 1,081,480 in 2000 to 1,667,372 in 2015. For India, the overall age adjusted prevalence rate for stroke is estimated to lie between 84-262/100,000 in rural and between 334-424/100,000 in urban areas. Overall in India, the adjusted annual incidence (per 100,000 persons) of stroke is 124 in rural area and 145 in urban area. Recent evidence suggests that 72.7% of stroke survivors in rural India have severe disability and unmet needs for stroke care.⁵

Stroke is a life-changing event that affects not only the person who may be disabled, but their family and caregivers. There are three types of caregivers. Formal caregivers are volunteers or paid employees connected to the social service or health care systems. Informal caregivers are family members and friends, who are the primary source of care for nearly three-quarters of the affected individuals who live in the community. The third type, the family caregiver, refers to care provided by close relatives. Caregivers assist or provide most of the care for people who need help in activities of daily living, such as bathing, dressing, preparing meals, transfers and ambulation.⁶

Burden refers to a high level of stress that is difficult to deal with and that one cannot get rid off. Stress is a factor that disturbs the mental and physical functioning of the body. Handling stress is the key factor to be happy in life. The degree of stress and the ways how it can be handled also determines the chances of getting diseases or illnesses. Long term treatment, unprepared responsibilities and tasks, dealing with changes in the relationship with stroke survivors can cause stress to caregivers. Burden can be chronic and includes many uncontrollable stressors such as social isolation, psychologically demanding personal care.⁷

Coping is the process by which the demands of a threat or challenge are made manageable. It is used to describe how individuals and families adapt to the burden of chronic illness. Stroke is a life challenging event and use of coping strategies to manage burden is helpful for the caregivers to improve their health. Caregivers, no matter what personality, needs support and respite from care to be successful in their efforts.⁷

A cross sectional survey was conducted to assess the financial, physical, psychological and family burden of 199 caregivers of stroke patients in an urban community of Kolkata, India. The study results revealed that increased workload, related anxiety and depression and sleep disturbance were reported by 70%, 76%, and 43% of caregivers respectively. More than 80% reported financial worry. Caregivers of patients with dementia and depression experienced greater stress. The study concluded that psychological stress was prominent and common among caregivers of stroke patients and recommended strategies to reduce caregiver burden.⁸

Most of the caregivers are ill-prepared for their role, and provide care with little or no support, yet more than one third of the caregivers continue to provide intense care to others while suffering from poor health themselves. A substantial body of research shows that family members who provide care to the individuals with chronic or disabling conditions, are themselves at risk. Emotional, mental and physical health problems arise from complex care-giving situations, and the strains of caring for relatives who are frail or with disabilities.⁶

MATERIALS ANDMETHOD:

The methodology adopted for the study includes research approach, research design, setting of the study, population, sampling technique, development and description of the instruments for data collection, development of an information booklet, procedure for data collection and plan for data analysis.

Research approach:

In order to achieve the objectives of the study a descriptive survey approach was found to be appropriate and selected for the study.

Research design:

The research design adopted for the present study was non experimental descriptive correlational design for collection and analysis of data.

Variables:

Research variable:

In the present study the research variables are the burden and coping strategies.

Attribute variables:

In the present study the attribute variables are age, gender, marital status, religion, type of family, education, occupation, monthly income, duration of caretaking, relationship and history of stroke in the family.

Research setting:

The study was conducted at selected hospitals of Mangalore Taluk .

Population:

In this study population consists of caregivers of Cerebrovascular Accident (CVA) patients who are visiting the rehabilitation departments of selected hospitals of Mangalore Taluk.

Sample:

The study sample consists of 100 caregivers of Cerebrovascular Accident (CVA) patients from selected hospitals of Mangalore Taluk .

Sampling technique:

The sampling technique used for the study was non-probability purposive sampling. Out of the total population defined, 100 subjects who met the criteria were selected for the study.

Sampling criteria:

The sample was selected with the following pre-determined set of criteria.

Inclusion criteria:

All the caregivers of CVA patients who are

• caring for more than one month period.

• available during the study

• able to read and write Kannada

Exclusion criteria:

The caregivers of CVA patients who are

• caring for less than one month period

• not willing to participate in the study

Data collection instruments:

The investigator used demographic proforma, modified Elmstahl caregiver burden scale and modified Carver cope inventory to collect the data from subjects.

Development of tool:

The present study was planned primarily to assess the burden and coping strategies and to identify the correlation between them among the caregivers of CVA patients. Modified Elmstahl Caregiver Burden Scale and Modified Carver cope inventory were used to determine the burden and coping strategies. The following steps were adopted in the development of the tool:

Ø Review of literature

Ø Discussion with experts in the field of neurology, medical and surgical nursing and psychology.

Ø Modified Elmstahl caregiver burden scale

Ø Modified Carver cope inventory

Ø Content validity

Ø Pre-testing of the tool

Ø Reliability

Development of information booklet on coping strategies and improving the life of caregivers of CVA patients:

In this study, information booklet refers to a comprehensive yet simple self learning material that can assist the caregivers of CVA patients to manage burden and improve their coping. The following steps were adopted to develop the booklet.

(i) Preparation of the first draft:

The first draft of the booklet was prepared on the basis of literature related to caregivers of CVA patients and the opinion of the subject experts. The content was organized under the following headings Tips to improve the coping and general health of caregivers of CVA patients:

§ Caring for the caregiver

§ Care of the patient

§ Instructions to maintain good health

(ii) Preparation of the criteria check list for information booklet:

A criteria checklist was prepared based on the above draft. Since it highlighted the instructions to improve coping and general health of CVA caregivers which needed to be emphasized in the booklet, the areas included in the checklist were objectives, content selection, and organization of content, language, visual image used and feasibility and practicability of the information booklet. The criteria checklist contained of 3 columns of agree, strongly agree or disagree and remarks for expert to give their valuable opinions and suggestions.

Testing of instrument:

Content validity of the tool and information booklet:

The selected tool and demographic proforma along with the problem statement, objectives, operational definitions, hypotheses, inclusion and exclusion criteria and information booklet were given to 9 experts. Seven were from the field of medical surgical nursing speciality, one neuro surgeon and one psychologist. The criterion checklist contained of 3 columns of agree, strongly or disagree and remarks for expert to give their valuable opinions and suggestions.

Demographic proforma:

There were 11 items in the demographic proforma and all items had 100% agreement.

Modified Elmstahl caregiver burden scale:

The modified Elmstahl caregiver burden scale had 20 items, among which 18 items had 100% agreement and 2 items had 88.9% agreement. Modifications were made on 2 items as per the suggestions of the experts.

Modified Carver cope inventory:

The modified Carver cope inventory had 30 items and all the items had 100% agreement.

Information booklet:

There was 100% agreement for the language used and practicability of the information booklet. The validated tool and information booklet was translated into Kannada by a language expert and then retranslated into English by another expert to establish the language validity of the tool and information booklet.

Pre-testing the tool and information booklet:

After obtaining the permission from the concerned authority of selected hospital of Mangalore, the tool was pre tested on a sample of 6 caregivers of CVA patients on 10-09-2013. The trial of the tool was done to determine the clarity of the items, presence of ambiguous items and the time required to complete the tool, difficulty in understanding the items and to ensure the flexibility of the tool. The time taken to complete the tool was 25-30 minutes, the tool was clear and understandable. A try out of the modified versions of the booklet was carried out among 6 caregivers of CVA patients at selected hospital of Mangalore ,who fulfill the sampling criteria. The subjects chosen were similar in characteristics to those of the population under the study. The pre-testing of the information booklet was done to check the clarity of items, ambiguity of the language, practicability and feasibility. The language and content of the booklet was found to be simple, understanding and comprehensive enough for caregivers to improve their coping.

Reliability of the tool;

To ensure the reliability, the tool was administered to 10 caregivers of CVA patients on 11-09-2013 and 12-09-2013 at selected hospital of Mangalore, who fulfilled the sampling criteria. Respondent did not find any difficulty in understanding and answering the questions. The reliability co-efficient of the tool was calculated using split half method by followed by Spearman’s Brown Prophecy Formula. The reliability of the tool was found to be r (10) =0.9 and r (10) =0.9 respectively, which was statistically significant. The tool was found to be highly reliable.

Description of final tool:

The final tool consisted of three parts:

Part 1: Demographic proforma

Demographic proforma of the subjects included 11 items such as age, gender, marital status, religion, type of family, education, occupation, monthly income, duration of caretaking, relationship and history of stroke in the family.

Part 2: Modified Elmstahl caregiver burden Scale

It is four point Likert type of rating scale developed by Elmstahl to measure the level of burden among caregivers. The score given to each response as 0- not at all, 1-sometimes, 2- often and 3- always. The total question in burden scale is 20. The maximum score was 60 and minimum score was 0.

The score has categorized on arbitrary basis as follows:

Severity of burden

Score

Percentage (%)

Mild

Moderate

Severe

0-20

21-40

41-60

0-33

34-66

67-100

Part 3: Modified Carver cope inventory:

It is four point Likert type of rating scale developed by Carver to assess a broad range of coping responses. The score given to each response as 0- not at all, 1- sometimes, 2- often and 3- always. The total question in cope inventory is 30. The maximum score was 90 and minimum score was 0.

The areas of coping are grouped under 12 sections:

Section A: consists of 2 items regarding positive reinterpretation and growth.

Section B: consists of 2 items regarding mental disengagement.

Section C: consists of 2 items regarding focus on and venting of emotions.

Section D: consists of 3 items regarding use of social support.

Section E: consists of 2 items regarding active coping.

Section F: consists of 2 items regarding religious coping.

Section G: consists of 4 items regarding use of emotional social support.

Section H: consists of 3 items regarding acceptance.

Section I: consists of 3 items regarding suppression of competing activities.

Section J: consists of 3 items regarding planning.

Section K: consists of 2 items regarding restraint.

Section L: consists of 2 items regarding behavioral disengagement.

The score are categorized on arbitrary basis as follows:

Level of coping

Score

Percentage (%)

Very poor

Poor

Average

Good

Very good

0-18

19-36

37-54

55-72

73-90

0-20

21-40

41-60

61-80

81-100

Pilot study:

Pilot study is a small scale version or trial run done in preparation for a major study.⁴⁵ After obtaining permission from the concerned authority of selected hospital of Mangalore , based on pre-determined criteria set by the investigator, sample were selected through non-probability purposive sampling. Pilot study was conducted on 13-09-2013 and 14-09-2013 among 10 caregivers of CVA patients after taking consent from them. The subjects were informed about the purpose of the study and confidentiality was assured. The tool was administered to the subjects. The time taken to complete the tool was 25-30 minutes. The tool was found practicable, feasible and no changes were made after the pilot study. The data were analyzed using descriptive and inferential statistics. The investigator decided to carry out the actual data collection after the pilot study.

Data collection process:

Data collection process refers to the steps of gathering information needed to address a research problem.⁴⁵ After obtaining a formal written permission from the concerned authority final data collection was done from 10-10-2013 to 09-11-2013 in selected hospitals of Mangalore Taluk .

The data were collected from 100 caregivers of CVA patients who were selected using non-probability purposive sampling technique keeping in mind the study criteria. Subjects were asked to participate in the study after self introduction by the investigator. The subjects were informed about the purpose of the study and their consent was attained.

The data were collected by using Demographic proforma, Modified Elmstahl caregiver burden scale and Modified Carver cope inventory. The investigator did not find any difficulty in collecting data from the subjects. The respondents were cooperative. The data was thus collected and compiled for data analysis.

Plan for data analysis:

Descriptive and inferential statistics were planned to analyse the collected data. To compute the data, a master data sheet was prepared by the investigator.

· Demographic data would be analyzed using frequency and percentage.

· Burden and coping strategies would be analyzed by computing frequency, percentage, mean, median, mean percentage and standard deviation.

· Correlation between burden and coping strategies would be analyzed by using Karl Pearson coefficient of correlation.

· Chi-square test would be used for finding association between burden and selected demographic variables.

· Chi-square test would be used for finding association between coping strategies and selected demographic variables

RESULT:

This chapter deals with analysis and interpretation of data collected from 100 caregivers of CVA patients to assess the burden and coping strategies, to find out the correlation between them and association with selected demographic variables. Master data sheet was prepared and the data were analyzed based on the objectives and hypotheses using descriptive and inferential statistics.

Organisation of the study findings:

In order to assess the burden and coping strategies and to find out the correlation between them, the data were tabulated, analyzed and interpreted using descriptive and inferential statistical methods. The data were presented under the following headings:

Section I: Demographic data.

Section II: Distribution of subjects according to their burden score.

Section III: Distribution of subjects according to their coping score.

Section IV: Correlation between burden and coping strategies.

Section V: Association between burden and selected demographic variables.

Section VI: Association between coping strategies and selected demographic variables.

Section I: Demographic data:

This section deals with the characteristics of 100 caregivers of CVA patients in terms of frequency and percentage. The data is presented in Table 1a and 1b.

Table 1a: Frequency and percentage distribution of subjects on the basis of their demographic datan=100

Sl No	Demographic data	Frequency (f)	Percentage (%)
1. Age in years
a	20-30	15	15
b	31-40	36	36
c	41-50	30	30
d	>50	19	19
2. Sex
a	Male	23	23
b	Female	77	77
3. Marital status
a	Single	16	16
b	Married	63	63
c	Divorced/ separated	5	5
d	Widowed	16	16
4. Religion
a	Hindu	48	48
b	Christian	36	36
c	Muslim	16	16
d	Others	0	0
5. Type of family
a	Nuclear	37	37
b	Joint	63	63
6. Education
a	Primary schooling	16	16
b	Secondary schooling	17	17
c	Higher secondary schooling	39	39
d	Diploma	11	11
e	Graduate	14	14
f	Post graduate	3	3

Table 1b: Frequency and percentage distribution of subjects on the basis of their demographic datan=100

7. Occupation
a	Professional	19	19
b	Business	15	15
c	Agriculture	5	5
d	Coolie	9	9
e	Homemaker	51	51
f	Others	1	1
8. Monthly income in rupees
a	< 5000	6	6
b	5001 -10,000	29	29
c	10,001 -15,000	32	32
d	15,001-20,000	25	25
e	>20,000	8	8
9. Since how long have you been taking care of the patient (in months)
a	1 -6	29	29
b	7 –12	39	39
c	13 -18	22	22
d	>18	10	10
10. Relationship of the caregiver with the patient
a	Father	0	0
b	Mother	9	9
c	Husband	6	6
d	Wife	26	26
e	Brother	7	7
f	Sister	13	13
g	Health worker	0	0
h	Others	39	39
11. Is there any history of stroke in the family?
a	Yes	47	47
b	No	53	53

Section II: Distribution of subjects according to their burden score

Table 2: Frequency and percentage distribution of subjects according to the level of burden n=100

Severity of burden

Frequency(f)

Percentage (%)

Mild

Moderate

Severe

Table 3: Mean, median, mean percentage and standard deviation of burden score n=100 on III: Distribution of subjects according to their coping score

Max possible score	Range	Mean	Median	Mean %	SD
60	21-46	32.3	33	53.8	4.8

Table 4: Frequency and percentage distribution of subjects according to the level of coping n=100

Level of coping

Frequency

Percentage

Very poor

Poor

Average

Good

Very good

Table 5: Mean, median, mean percentage and standard deviation of coping score n=100

Max possible score	Range	Mean	Median	Mean %	SD
90	31-62	46.9	47	52.1	6.4

Table 6: Area-wise coping score of subjects n=100

Areas of coping	Max possible score	Range	Mean	Median	Mean %	SD
Positive reinterpretation and growth (C₁)	6	1-6	4.1	5	68.3	1.1
Mental disengagement (C₂)	6	0-6	3.1	3	51.6	1.6
Focus on and venting of emotions (C₃)	6	0-6	3.1	3	51.6	1.2
Use of social support (C₄)	9	0-9	4.5	4	50	2.3
Active coping (C₅)	6	0-6	3.8	4	63.3	1.2
Religious coping (C₆)	6	0-6	4.1	4	68.3	1.4
Use of emotional social support (C₇)	12	1-10	5.1	5	42.5	2.3
Acceptance (C₈)	9	1-9	6.6	7	73.3	1.5
Suppression of competing activities (C₉)	9	1-8	4.5	4	50	1.4
Planning (C₁₀)	9	0-9	3.5	4	38.8	1.9
Restraint (C₁₁)	6	0-5	2.6	3	43.3	1.4
Behavioural disengagement (C₁₂)	6	0-6	1.9	1.5	31.6	1.9

Table 7: Correlation between burden and coping strategies. n=100

Area	Mean	Standard deviation	Correlation	remarks
Burden	32.3	4.8	*0.1	Positive correlation
Coping strategies	46.9	6.4	*0.1	Positive correlation

*= significance

Table 8a: Association between burden and demographic variables n=100

Sl No	Demographic variables	Burden score			χ2 (df)
		Median < 33	Median > 33
1. Age in years
a	20-30	11		4	6.6 (3)
b	31-40	24		12
c	41-50	12		18
d	>50	10		9
2. Sex
a	Male	14		9	0.1 (1)
b	Female	43		34
3. Marital status
a	Single	11		5	5.5 (3)
b	Married	38		25
c	Divorced/ separated	3		2
d	Widowed	5		11
4. Religion
a	Hindu	24		24	2.3 (2)
b	Christian	24		12
c	Muslim	9		7
d	Others	0		0
5. Type of family
a	Nuclear	20		17	0.2 (1)
b	Joint	37		26
6. Education
a	Primary schooling	9		7	*11.1 (5)
b	Secondary schooling	5		12
c	Higher secondary schooling	24		15
d	Diploma	5		6
e	Graduate	11		3
f	Post graduate	3		0

Table value χ2₍₁₎=3.85, χ2₍₂₎=5.9, χ2₍₃₎= 7.8, χ2₍₅₎=11

Table 8b: Association between burden and demographic variables n=100

Sl No	Demographic variables	Burden score		χ2 (df)
Sl No	Demographic variables	Median < 33	Median> 33	χ2 (df)
7. Occupation
a	Professional	14	5	7.5 (5)
b	Business	9	6
c	Agriculture	3	2
d	Coolie	2	7
e	Home maker	28	23
f	Others	1	0
8. Monthly income in rupees
a	< 5000	2	4	4.8 (4)
b	5001 -10,000	15	14
c	10,001 -15,000	18	14
d	15,001-20,000	15	10
e	>20,000	7	1
9. Since how long have you been taking care of the patient (in months)
a	1 -6	17	12	3.4 (3)
b	7 –12	23	16
c	13 -18	14	8
d	>18	3	7
10. Relationship of the caregiver with the patient
a	Father	0	0	2.7 (5)
b	Mother	5	4
c	Husband	3	3
d	Wife	13	13
e	Brother	4	3
f	Sister	6	7
g	Health worker	0	0
h	Others	26	13
11. Is there any history of stroke in the family?
a	Yes	25	22	0.5 (1)
b	No	32	21	0.5 (1)

Table value χ2₍₁₎=3.85, χ2₍₃₎= 7.8, χ2₍₄₎=9.4, χ2₍₅₎=11; * = significance

Table 9a: Association between coping and demographic variables n=100

Sl No	Demographic variables	Coping score		χ2 (df)
Sl No	Demographic variables	Median < 47	Median > 47	χ2 (df)
1. Age in years
a	20-30	8	7	3.1 (3)
b	31-40	23	13
c	41-50	14	16
d	>50	8	11
2. Sex
a	Male	13	10	0.1 (1)
b	Female	40	37	0.1 (1)
3. Marital status
a	Single	8	8	4 (3)
b	Married	37	26
c	Divorced/ separated	3	2
d	Widowed	5	11
4. Religion
a	Hindu	23	25	3.7 (2)
b	Christian	18	18
c	Muslim	12	4
d	Others	0	0
5. Type of family
a	Nuclear	21	16	0.3 (1)
b	Joint	32	31	0.3 (1)
6. Education
a	Primary schooling	12	4	5.5 (5)
b	Secondary schooling	8	9
c	Higher secondary schooling	18	21
d	Diploma	5	6
e	Graduate	9	5
f	Post graduate	1	2

Table value χ2₍₁₎=3.85, χ2₍₂₎=5.9, χ2₍₃₎= 7.8, χ2₍₅₎=11

Table 9b: Association between coping and demographic variables n=100

Sl No	Demographic variables	Coping score		χ2 (df)
Sl No	Demographic variables	Median< 47	Median> 47	χ2 (df)
7. Occupation
a	Professional	10	9	1.9 (5)
b	Business	7	8
c	Agriculture	3	2
d	Coolie	6	3
e	Home maker	26	25
f	Others	1	0
8. Monthly income in rupees
a	< 5000	4	2	3.8 (4)
b	5001 -10,000	15	14
c	10,001 -15,000	18	14
d	15,001-20,000	10	15
e	>20,000	6	2
9. Since how long have you been taking care of the patient (in months)
a	1 -6	16	13	0.9 (3)
b	7 –12	22	17
c	13 -18	11	11
d	>18	4	6
10. Relationship of the caregiver with the patient
a	Father	0	0	3.5 (5)
b	Mother	6	3
c	Husband	3	3
d	Wife	15	11
e	Brother	4	3
f	Sister	4	9
g	Health worker	0	0
h	Others	21	18
11. Is there any history of stroke in the family?
a	Yes	29	18	2.6 (1)
b	No	24	29	2.6 (1)

Table value χ2₍₁₎=3.85, χ2₍₃₎= 7.8, χ2₍₄₎=9.4, χ2₍₅₎=11