INTRODUCTION:

Home based care of neurosurgery patients is a difficult task for caregivers due to associated co-morbidities. Because of the nature of neurological deficit, independence in their daily life is compromised.¹Usually, family caregivers lack basic knowledge about care provision.²So, generally, they are not able to follow the instructions given to them at the time of discharge. Family members are often burdened with a variety of direct and indirect care giving tasks that may disrupt their own normal family life as well as daily work.³ Because of this, caregivers frequently report high level of stress and poor physical and emotional health, as well as career sacrifices, monetary losses and work place discrimination.⁴ Other effects on caregivers include less time spent with other family member and friends. Recreational activities, such as hobbies and vacation may also be sacrificed.

More than 90% of the long term care burden in India is provided by family members, but still, there is lack of quality research regarding assistance and support required by them.⁵ The caregivers have to deal with patient symptoms and help patients in activities of daily life by providing extraordinary uncompensated care although they feel untrained and unprepared.⁶ Caregivers in community have been reported to have low to moderate levels of quality of life.⁷ The neurosurgeons also may find less time to relate to patients as individuals, each one with unique sets of needs and complaints.⁸ Effects of disability and associated psychiatric symptoms due to neurological condition adds to caregivers’ distress.⁹The care of their patients also associates to neglecting their own need. Neurosurgeons are generally unable to address caregivers’ questions, due to heavy loads of patients, cultural barriers and time constraints.⁶

Many researchers have found that when patient and family have a better understanding of their diagnosis and treatment, they are more able to cope with their illness, use the health system more effectively and have less psychological distress.¹⁰ This can be done by actively involving the family caregivers in the care provision.²This may require one to one training of caregivers through a self instruction manual. The training can be provided during their hospital stay and even after the patient is discharged.

Against this background the present study was planned with following objectives.

• To ascertain the problems faced by family caregivers in home care of these patients.

• To evaluate the quality of home care of these patients.

• To explore the opinions of family caregivers about their role in home based care

MATERIALS AND METHODS:

This cross sectional interview based descriptive study was conducted in 2010 in Chandigarh. All patients (residents of Tricity Chandigarh, Mohali and Panchkula) discharged from neurosurgical ward PGIMER within last one year, and patient attending regular follow up OPD and discharged within last three years were included in the study.

After taking the addresses of neurosurgical patients from discharge register in neurosurgery ward Nehru Hospital PGIMER and from the register of patients attending follow up clinics in new OPD, attempts were made to contact them at their homes. Non traceable patients were excluded from the study. Suitable appointments were sought from the patients and respondents (prime caregiver) for the interviews. First of all, they were explained about the purpose of the study. Consent for interview was taken. Repeated visits were also made as per the need for this purpose. Relevant records of treatment were examined. After filling up demographic data interview schedule based survey was done. In depth interview was also done for the respondents who were vocal enough to share their views freely with us. Verbatim responses were also recorded.

Key caregivers of patients were interviewed as proxy respondents in case subject was not in a condition to respond. Patients and caregivers were also interviewed about the difficulties encountered in hospital during operation, and about the care received, after discharge from neurosurgery ward. An assessment was made regarding quality of home based care received by the patient after discharge from the hospital. All cases that were not available for three consecutive visits, non-cooperative patients and patients/caregivers not ready to give consent were excluded from the study.

To assess burden of care giving and to quantify strain to the caregiver an internationally acceptable modified caregiver strain index¹¹ was used. Scoring for quality of care (QOC) was done by taking in to consideration various domains of QOC at home using some assessment tools on the basis of criteria suggested by Donabedian.¹²

An assessment was made of QOC by taking in to account various indicators based on observation about presence and absence of co-morbidities, satisfaction of patient, compliance and support. Scoring criteria was made on 0 or 1 basis. Out of the total maximum score (15) patients having score of 13 or above were considered as receiving good quality care patient receiving 9-12 and below 9 were considered as receiving average and poor quality of care respectively. The person in the family who was primarily responsible for care of the patient at home was defined as key caregiver for the purpose of study. Textual analysis of the data was done. SPSS version 17 and Excel software were used for analysis. Percentage, mean, standard deviation, tables and graphs were used for the interpretation of data. The subjects were informed about the purpose of study. They were assured that all personal information will be kept confidential and used only for research and study purpose. Consent was also taken from patients as well as their key care provider. Ethical clearance was obtained from Institute ethical review committee.

RESULTS:

An attempt was made to visit 100 patients’ homes. Their addresses were taken from neurosurgery department. Only 61 patients were traceable. Rest 39 patients either were non traceable or had changed their residence due to retirement from job or some other reasons like marriage of girls, transfer, or were staying with relatives or were on rent for treatment purpose, Out of these 61 cases, two patients died within a month of their operation and one patient was not willing to participate due to some personal reason. So, 58 patients were included in the study.

Maximum number of patients were in age group of 36-50 years (34.48%) followed by 25-35 and above 50 years age group (22.41% each). The mean age was 38.9 years (standard deviation 15.42 years) (range = 4-75 yrs). Among all 58 patients 36 were male and 22 were females.

Maximum number of caregivers were in the age group of 25-35 years (33.33%) followed by the age group of 36-50 years (31.57%). Caregivers below the age group of 25 were just 14%.One patient didn’t have any caregiver (living alone). Among all age group primary caregivers were mainly females [33 out of total 57* (* one patient was residing alone) ]. The mean age of caregivers was 39.12 years (S.D. = 13.4 years). The minimum age among caregiver was 18 years and maximum age was 73 years. Overall majority of the care at home was provided by females (57.89%). Majority of the patients were males (61.40%). Out of total 57 caregivers maximum percentage was of spouse (45.6%). Only one patient hired a caregiver/attendant.

Many patients (41.4%) and caregivers (43.9%), were not in the job. They were either students / house wife or not able to do any kind of work. Many of the patients were graduate and above (31.6%) whereas 24.6% caregivers were educated up to higher secondary. Majority of patients (72.4%) were from urban area. Almost 1/3^rd of cases were due to trauma caused by road traffic accidents, falls and assaults.

A MCSI score of severe strain ≥ 19 was noticed in more than half of the caregivers (63.2%). The mean score of caregivers strain index was 19.75 (standard deviation=4.5) with a range of 9 -26 (Table 1). Many factors were found to be responsible for the high caregiver strain. Sleep disturbances was the major reason reported by 90% of the caregivers. Physical strain due to helping patients in various activities like transfer, helping in bathing etc and confining of caregivers due to these activities contributed almost 80% to the strain involved to the caregivers. Majority (65%) of the caregivers reported financial burden as a big contributor to the strain involved. The amount of financial strain involved can be understood by statement from one of caregiver. To quote one of our cases , “Ganne ke juice ki rehri lagata hun kitna kamaunga? Par meine sab kiya karj le kar.” (I am a sugarcane juice seller. How much I will earn? But I did everything by raising a loan). Out of the 26 caregivers having records of their operation expenditure with them, 18 spent more than Rs 20000/- on operation, 8 patients spent less than Rs 20000/-. Total money spent on morbidity was more than one lakh per case in 17 out of 32 respondents, whereas 16 caregivers spent less than 1 lakhs. Other reasons responsible for high strain reported in few caregivers is the overwhelming nature of patient’s condition and behaviour. Upsetting behavior by patients many a time, contributed to increased strain on caregivers. To quote ,"Sare rishtedar gussa khate hain. Hum bhi bahut gussa karte hain, us ko jhidkein marte hain. Ab kya karein sab tang aa chuke hain”. (All relatives are angry we get annoyed too. We scold him. What to do now, we all are fed up).

36 of total patients and caregivers told that waiting time at the time of follow up was wearisome. Out of all, 26 caregivers said follow up care of their patient was the most tiresome job for them, 22 caregivers also said inability to understand complicated hospital procedure and too much running around was a trouble. Delay in reports of lab test and need of recommendation were the other important problems told by 8 caregivers.

Problem due to rude behaviour of consultant and harassment by security guards were another problem reported by 5 caregivers. Other problems reported by caregivers were ventilator shortage, VVIPs visit, bed shortage, arrangement of blood transfusion, meeting with patient during hospital stay and staying problem for caregivers.

Condition of 43 (74%) patients improved after operation, whereas it deteriorated in 4 (6.9%) patients. In 11 (19%) patients condition remained same after operation.

Almost half of the patients were getting good quality of care (Table 2) at their home (49.1%). In some of the patients, quality of care at home was also found to be poor (17.5%). Quality of care for almost 1/3^rd of the patients was found to be satisfactory. Complication arising after operation was reported as biggest worry by caregivers.

Most of the caregivers in our study told support from somebody as measure stress reliever. To quote, “Attendants aur patients ki psychological counselling honi chahiye. Khhas kar attendant ko to bahut jarurat hoti hai support ki”. (There should be a provision of psychological counseling for both attendants and patients. Support is must for the attendants).

Tables 1: Level of strain in family caregiver of patients.

Level of strain (MCSI score)	Frequency	Total
Low strain (≤ 9)	1	1.7
Moderate strain (10 – 18)	20	35.1
High strain (19 – 26)	36	63.2
Total	57	100

Table 2: Quality of care received at home

Quality of Care	Percentage
Good	49.1%
Satisfactory/Average	33.4%
Poor	17.5%

Conflict of interest: None Declared

Competing Interests: Declared that no competing interests exist

DISCUSSION:

Post operative neurosurgery patients receive constant support and supervision from doctors and nurses during the hospital stay. During this period family members act as mere attendants, and follow the instructions of doctors and nurses.

But real problems start after discharge from hospital, when the role of family member changes from an attendant to a full time caregiver. They have to provide the kind of care the patient was getting in hospital. At home, everything is to be done by themselves without any supervision from doctors/nurses.

After discharge from hospital, family caregivers devote a substantial amount of time to look after neurosurgical patients.¹³^,¹⁴^,¹⁵ Many researchers have documented the physical, financial and emotional toll of care giving on the quality of life of the caregivers.¹³^,¹⁴ The proper understanding of these caregivers perspective are important in order to plan effectively the care provision for such patients at home.

Our study and some other studies in past revealed that stress, burden and anxieties are common care giving experience. High rate of depressive symptoms among family and informal caregivers has been noted in our study as well in the studies done elsewhere.^{1, 16}

Our study shows that the majority of affected population was young and productive. Almost 60% of the patients were from 25 – 50 years age group. This forces the patient to work adjustment, job loss for some time or dependency for longer time. Work may affect care giving and vice versa. Many (36%) of patients in our study had to leave their job and more than 60% did some work adjustments. Majority (75%) of the patients said that they felt weak and that their efficiency was reduced after operation. This reflects the impact of neurosurgical condition on quality of life of patients.

In India, most of the actual burden of care giving is shared by family, friends, neighbors and volunteers.¹⁷ Long term care at home can be provided either by family members of affected individuals or professional caregivers. As such, there is no policy by Government of India to provide care giver services at home. Some schemes have been framed keeping in mind the principles of equity and also the low budget outlay for health and social welfare departments.¹⁸ Efforts to support the disabled and aged are also being made by the Government of India¹⁹ (Rehabilitation council of India Act 1995, OASIS project, old age pension, disability pension). But knowledge about these schemes is limited in general public.¹⁸ Moreover, it covers only minimal financial support rather than wholesome comprehensive care provision. To hire a professional caregiver at home is a costlier affair and majority of Indian population cannot afford it So, family has to care for their patients.

The issue that who will provide care is a matter of debate, with different forms of social and governmental systems mooting different answers¹⁸. There are different school of thoughts of providing long term care ranging from individuals and family to relatively new view from Europe and Japan to shift long term care burden from family to society.²⁰ Shifting of long term care from hospital to home setting brings forward the issues of quality of care at home in to focus.

India hardly has any policy on long term care of disabled patients. So, long term care of patient in India is usually a family affair. Almost all (98%) of caregivers in our study were also family members/spouse of the patients. This is similar to a study which reported that more than 90% of patient care in India was done by family members of the patients.²¹^,²²

Most of the caregivers in our study were females in productive age group. This is consistent with other studies in India and abroad.²²^,²³ In 58% cases, females were providing the care at home. Many women combine working and caring, taking on both burdens and the so-called ‘women in the middle’ find themselves responsible for caring for young children as well as elderly relatives at the same time.²³

Most (85%) of the caregivers reported work adjustments and 8% suffered a job loss due to patient condition. Other studies have also presented some similar findings where some caregiver had to reduce their work hours and some had to withdraw completely from labour force.¹⁵This means caregiver also has to do some work adjustments according to patient need and demand.

While fulfilling the need of patient and caring at home, caregivers also have to go for job and earn their living. Sometimes, care giving at home and other responsibilities lead to deterioration of caregivers’ health as well. Like other studies, severe strain, depression and sometime psychological symptoms were reported in many caregivers in our study.²⁴

Indian value system places a high focus on family ties.¹⁵Despite many transformations in the nature of families in Indian society, caring for the sick and injured is still one of the functions of family. Family is expected to provide front line care.²⁵Without the support of the family no amount of medical care can succeed.²⁵

Relatives, spouse and family in all act as shock absorber for each other, and especially for the patients.¹⁵

As observed in our study, and the researchers from other studies have suggested the family caregivers role as a uncompensated care provider without having capacity building to do so. Concept of private attendants/ community health care/ nursing care in home care after operation is almost missing from India. Only one patient in our study had employed an attendant for home care. Trained attendants are seldom available in our society and if present, keeping an attendant for care is beyond the reach of many families. In Western countries, although caregivers feel more or less similar sorrow and grief of patient’s condition, there are special rehabilitation centres and quality home nursing care stations for long term care.¹³

The quality of treatment and care in neurosurgery department, PGIMER, Chandigarh is of high standards. This is corroborated by a good rating given to PGIMER by an evaluation committee in 2010.²⁶In this report PGIMER was ranked 3^rd in term of quality of care provided to the patients in whole country. Half of the patients in our study were independent in daily life activity after operation, whereas another half was depended upon caregiver from moderate to total dependency. The patient who didn’t recover following operation forced a lot of problems, and forced long term dependency on the caregivers shoulder.

Our study revealed that there was high care giving strain on the family caregivers. Almost all (98%) of the caregivers from our study experienced moderate (35%) to high (63%) amount of strain. In Scotland, researchers reported low level of gradually increasing strain in caregivers with time (25% at one month, 28% at 3 month, 37% at 6 month).²⁴

Sleep disturbances was the major reason reported by 90% of the caregivers. These findings are in contrast to another Indian study conducted on stroke caregivers where 40% caregivers reported sleep disturbances. This can be due to age structure differences between two studies. Mean age of patients in stroke study was 60 years whereas in our study among neurosurgery patients mean age was just 39 years, so future worries of patients were more among caregivers in our study.

Physical strain due to helping patients in various activities like transfer, helping in bathing etc and confining of caregivers due to these activities contributed almost 80% to the strain involved to the caregivers, similar findings were reported in community based study in Calcutta which account for 70% of physical strain in caregivers.²² Changes in personal plans, family adjustments, work adjustments accounts for almost 70% of caregiver strain in respective domains. These findings were similar to the findings reported in Scottish study that most contributing domains in strain were due to confining nature of care giving, changes in personal plans and family adjustments.

Financial burden was another reason for the caregiver strain. Recent Indian study in Calcutta also reported financial worry as biggest strain in 81% of caregivers.²²

High strain in caring and managing for their patient’s leads caregivers to neglect their own needs. This slowly exacerbates and starts deteriorating caregivers’ health as well. Cost of family care giving can be considerable; about one in five caregivers reported that their physical health had suffered as a result of care giving.¹⁵The vicious cycle keeps on increasing the burden of care giving. Psychological symptoms like depression and suicidal thoughts are also reported in caregivers.¹⁶Higher levels of depressive symptoms and mental health problems among caregivers than their non care giving peers have been reported in literature.²⁷ Increased burden further deteriorates health of caregiver and patient as well.

In depth interviews with the caregivers revealed that majority of them suffered from depression, stress and sleeplessness. Significant number of patients admitted that their anger level has increased after discharge of their patients from hospital. Few of them also reported problems of vomiting and UTIs. These all signs are only a tip of iceberg, because most of caregivers felt that condition has no solution and they look it as their destiny. All these conditions may have severe health outcomes in future.

Patient quality of care at home was good as reflected by the improvement in condition of patients. Quality of care is difficult to measure. Almost half (49%) of patients in our study were receiving good quality of care at home.

Customarily, people in India are particular about their personal hygiene regarding bathing, oral hygiene etc.²⁵ Low rates of bed sores (14%), UTIs (12%) and Pneumonia (10%) among patients also reflect this.

Poor quality of care is also related to the poor socioeconomic condition, low education standard and other high demand work responsibilities. Average/ satisfactory and poor quality of care was reported in 33% and 17% of cases respectively. The quality of care in patient with educated and high earning occupation was better. The quality of care in poor socioeconomic status family was poor. Good occupation of patient was also found out to be a contributor to high quality care. This can be justified with good earning and more affordability.

Most of the times caregivers’ health, starts deteriorating in order to fulfill patients’ needs. Associated high amount of depression is a growing mental health concern for such caregivers. Most of the people in India cannot afford high quality nursing home care. Insurance schemes are still in budding phase. Only viable option lefts are to train family caregiver or building a cadre of professional caregivers.

Preventing the so called catastrophic effects to the caregiver health need to be done by initiating rehabilitation and long term care programmes. Efforts can also be made to make available the professional caregivers in community setting, in addition training of family caregiver in the hospital settings.

Experiences from countries where there are care providing agencies and mode of training family caregivers are available reveals decrease in problems for both caregiver and patients. Stress free caregiver’s can take care of themselves and their patients as well.

Family care givers must be supported, as they are at risk for mental and physical health problems themselves.²⁸ The concept of care giving and creation of a cadre of care givers is the need of the time. A cadre of professional caregivers needs to be built. Training modules can be made according to need of patients and caregivers.

While in developed countries, education programs to increase the skills and confidence of family caregiver’s is a defined concept. There are only a handful of reputed institutes in our country that train caregivers. Professional Training can solve purpose of home based care for disabled by training family caregivers and a cadre of professional caregivers can be built to tackle increasing demand of family care giving due to increasing threat of NCDs and aging care.

The Ministry of Social Justice and Empowerment launched National Initiative on Care for Elderly (NICE) with National Institute of Social Defence (NISD) as a part of the National Policy on Older Persons. Under this initiative NISD certifies the care provider to provide care to older persons in the family and community settings. Some states like Karnataka and Rajasthan have also initiated the vocational nursing care programmes.²⁹ Other efforts in the field are training of caregiver under National mental health programme.³⁰ Tertiary care institutes like PGIMER can start initiatives in this area of home based nursing and physiotherapy care to support family care givers for better clinical and social outcome.

Limitations of the study:

Most of patients were from the follow up clinics in PGIMER OPD rather than being randomly selected. So, we cannot generalize the results. There is possibility that those patients/caregivers who had worse experiences and patients who chose to go for follow up in some other clinics after operation, might not had been contacted.

Study was conducted in Chandigarh where most of the families are socioeconomically better than other parts in India. And due to good awareness standards, expectations from system are much more as compared to other similar settings.

Although repeated visits were made according to patients and caregivers convenience but due to a cross sectional design no follow-up interviews was done.

The scale used for measuring quality of home based care is devised by investigator himself. This scale need to be validated.

RECOMMENDATIONS:

Caregivers training:

Training session to the caregivers can be provided at the time of hospital stay of their patients. Holding of training session of such caregivers will certainly reduce the amount of strain on them. Preparation of a cadre of trained professional caregivers can also be an alternate way for saving the family members from undue stress.

Psychological and dietary counseling:

A proper dietary advice at the time of discharge is needed for the betterment of patients. In addition, provision of psychosocial support for patients and caregivers may be done to get rid of undue stress.

Financial support mechanism:

Financial support to the needy patients should be arranged.

Future research:

More efforts need to be done to find out the exact burden of care giving in terms of Disability Adjusted Life Years (DALYs) lost. Research in this area is needed to find out the adverse effect of strain on health of caregivers and patients.

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Received on 24.08.2014 Modified on 09.10.2014

Asian J. Nur. Edu. and Research 5(3): July- Sept.2015; Page344-350

DOI: 10.5958/2349-2996.2015.00071.3