Over a period of last 30 years, neurosurgery has emerged as an important superspecialty in the field of health sciences. Because of the nature of the lesions and resultant neurological problems, neurosurgery patients remain bedridden for a long time and usually take a long time to heal. The pace of recovery in these patients depends initially on the quality of care provided by the hospital staff and, later on, on the appropriate management of the complications by the caregivers of the patient. In Indian setup, because of the health manpower constraints, family members of the patients often have to act as caregivers, even in hospitals. Because the quality and speed of recovery of these patients is mostly dependent on others, it is essential to understand the factors that can contribute to feeling of burden among caregivers. Emotional and physical factors contribute to this stress. Angry and resentful caregivers always report feeling more burdened than those not expressing anger (Alzheimer Solutions, n.d.). Some caregivers find their physical and mental well-being under attack, and anxiety, depression, a diminished social life, loss of self-esteem, and a decline in job performance are some of the problems they find themselves struggling with (Alzheimer Solutions, n.d.). Caregiver burden also increases steeply with increase in dissatisfaction with the care being provided at the hospital. Increasing disability and symptoms of the patients also matter, as do patients’ depression and quality-of-life scores and caregivers’ own satisfaction with their marital and sexual relationship (Scharg, Hovris, Morley, Quinn, & Jahanshahi, 2006). There are not many systematic studies exploring these issues in India; therefore, the current study has been planned with an objective to determine the extent of burden of caregiving on family members of neurosurgical inpatients and to understand its root causes.
Material and Methods
The study was conducted in preoperative and postoperative neurosurgery wards of Post Graduate Institute of Medical Education and Research, Chandigarh, and the data were collected from January 2010 to May 2010. The study had an integrated qualitative and quantitative design. It included a cross-sectional survey where selection of the patients was done randomly, and their caregivers were interviewed on the same date and place. Investigator also did clinical record analysis and in-depth case study of a few patients along with the administration of questionnaires.
The Modified Caregiver Strain Index was used, and in-depth interviews were conducted for eliciting responses pertaining to burden of caregiving. Verbatim responses obtained from the respondents were noted. For Caregiver Strain Index, it was arbitrarily decided to include 100 patients and caregivers for the study. For qualitative data analysis, data collection was stopped when saturation of information was achieved. Individual neurosurgery inpatients and their caregivers were the units of study.
The tools were pretested on some neurosurgery inpatients in November 2009, which provided feedback on the confusing and difficult questions and overlapping categories of the tool. The time taken to complete each tool was also noted. Relevant changes were done in the tools as per the results of the pretest.
After obtaining the lists of neurosurgery patients from the ward patient register, the patients and their caregivers were contacted. Admitted patients without any attending relative were excluded from the study. Caregivers were informed about the purpose of the study, and consent for interview and case study was taken. After filling up demographic data, clinical record analysis was done to document the diagnosis, treatment, and complications. The caregivers and family members were then interviewed to get feedback on the problems faced by them.
Textual analysis of qualitative data was done. Qualitative data from semistructured interviews were transcribed and analyzed using content analyses to identify issues and concepts. Rest of the data was analyzed using statistical software Epi-Info, and descriptive results were drawn out.
For this study, comorbidities were defined as both the preexisting health problems in the patients, like diabetes mellitus and hypertension, as well as the newly developed postsurgical complications. Caregivers were defined as persons who looked after the patients in hospitals or at homes (relative/paid workers hired by the family). This excluded hospital staff.
Written informed consent was obtained from all the respondents. Ethical clearance was also obtained from the institutional ethics committee.
Overall, 100 random patients and their caregivers from the neurosurgery department of Post Graduate Institute of Medical Education and Research were included in the study. Many (about 40%) of the patients in the study sample belonged to middle age group. About 70% of the total had family income of less than Indian rupee (INR) 10,000 per month (USD 185), almost 30% of which had it below INR 3,000 (USD 56) (Table 1). Only about 10% of the total sample had monthly family income above INR 30,000 (USD 553). More than 90% of the caregivers belonged to adult age groups, with caregivers below 20 years old or above 60 years old constituting less than 10% of the total. Around 70% of the total caregivers had first-degree blood relations with their patients, with another 25% added by in-laws or second-degree blood relatives. Caregivers with higher education (graduation and above) constituted more than 35% of the total. Only 4% of the caregivers reported to be illiterate, whereas most of them had completed their education up to 10th year of their schooling. Almost 50% of the total caregivers worked as lower-end general workers. Housewives constituted around 30% among the rest, whereas the remaining belonged to other professions.
More than 40% of the total caregivers reported improvement in their patients’ health after the interventions at the hospital. Another 40% felt that they could not say anything definitely as yet. About 15% of the total felt no improvement or deterioration in their patients’ health after the interventions.
Levels of satisfaction with the behavior of doctors and nurses among caregivers were high (more than 90%) with satisfaction with behavior of nursing staff slightly higher than that with doctors. Highest levels of satisfaction were recorded for ward servants with 95% of caregivers giving positive response to “Ward servants are helpful and cooperative.” Satisfaction with the behavior of security staff was recorded to be more than 85%. Ninety percent of the respondents were satisfied with cleanliness and spaciousness of the ward. More than 65% of the caregivers complained regarding seating arrangements for the caregivers, whereas 70% of the respondents were satisfied with the cleanliness of the toilets. Almost 30% of the caregivers chose not to respond to statements regarding the food provided in the ward.
Some of the caregivers (21%) reported that they faced problems in carrying out the tasks of caregiving for the first time after they had been instructed regarding the same by the hospital staff. Eighteen percent of the caregivers also complained about having received harsh words related to their ineffective caregiving from the staff at any point of time during their current duration of stay in the hospital. Over 90% of the caregivers opined that they should be formally instructed in caregiving. Only 20% of the total caregivers perceived caregiving as a burden on them, as almost 90% were being helped by other family members in the tasks of caregiving.
Although only about 41% of the caregivers stated that the duration they were getting to sleep was not sufficient, almost 55% of the total caregivers had reported to get less than 4 hours sleep per day, whereas another 41% reported that they were getting to sleep between 4 and 7 hours a day (Table 2). Maximum numbers of caregivers (45% of the total) reported a moderate strain on Moderate Caregiver Strain Index, whereas 37% had low strain. Minimum numbers of caregivers (17% of the total) belonged to the high strain category. Average strain per caregiver was calculated to be 11.65, which indicated moderate level of strain (Table 3).
Burden of caregiving and factors that affect it influence indirectly but very strongly the time spent by the patient in recovery. Because neurosurgery cases are very serious in nature, it becomes all the more important to study and reduce factors affecting stress levels of their caregivers. As explained by Schubart, Kinzie, and Farace (2008) in their study, caregiving required the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Educational levels of the patients in this study and their job profiles and family income details present a picture representative of the lower-middle and middle-middle class of the society, richer segments not getting their patients admitted here. Most of these patients thus admitted to the hospital belonged to sections of society that have limited resources of livelihood. This implies that a huge burden of expenses was levied upon them because of the illness, both directly and indirectly, leading to personal and social problems.
Traditionally, in all countries, families have been playing the role of primary caregivers (Brodsky, Habib, & Hirschfeld, 2002). Majority of the caregivers in our study also were immediate family members of the patients (71% of the total), underlining the traditional strong familial ties being in place in the Indian cultural scenario. In-laws of the patients, especially daughter-in-laws and their parents, outnumbered the kins and kiths and distant relatives, which can be explained by the formal feeling of responsibility toward one’s in-laws, stressed upon in the values and beliefs prevalent in North Indian social structure.
Children of the patients were, in most cases, acting as the primary caregivers, although this feeling of caregiving and duty toward the older adults weaned off in successive generations. Indian philosophy has always placed high value on the intergenerational ties, but the belief promoted in codes of domestic life expounding the duties that the younger generations have toward the old and the infirm no longer seems to be attracting the newer generations.
In contrast to the Indian scenario, most of the family caregivers in the United States are over the age of 45 years, with one fourth (27%) of caregivers between the ages of 45 and 54 years and 29% between 55 and 64 years (Johnson & Johnson, Inc., n.d.). Taylor (2006) in “Health Psychology” also mentioned that “The typical caregiver is a women in her sixties caring for an elderly spouse.” Moral, cultural, and social differences can be cited to account for this difference. Apart from this, the demographic profile of India is a lot younger with 55% of them being in the age group of less than 25 years, which may be another reason for this difference.
More than 75% of the caregivers in our study were found to be men, which reduces the female patients to female caregivers’ ratio by almost 50%. Most caregivers at homes in the United States as reported by Opinion Research Corporation are women. According to a 2005 survey commissioned by Johnson & Johnson Consumer Products Company, 56% of all caregivers were women and the majority was over the age of 45 years (Johnson & Johnson, Inc., n.d.). A study by Bains, Singh, and Singh (2010) in India also reported that the number of female caregivers was higher than male caregivers at homes.
The findings of our study are, thus, very interesting because caregiving in a sense is considered to fall in the domain of women; one probable explanation could be the hospital-based settings of the study, for it might be considered easier for male members of the household to take care of the patient’s medical needs when in hospital. Considerations of the societal norms as well as physical requirements of the caregivers’ responsibilities in a hospital, including the need for outdoor stay (in hospital campus), also favor this adjustment although female family members usually stay and look after the family at home.
The overall trends in literacy levels and job profiles (75% of total caregivers were found to be financially independent) point toward a process of natural selection, whereby more literate, wise, and dependable members of the household get selected to play the roles of lead caregivers at the time of crises of the magnitude that neurosurgery conditions befall on the households. This might be again responsible for the positive approach that caregivers elicit toward questions on formal training on caregiving put to them, hence may provide a lead to the policymakers toward development of caregivers’ training programs as the potential of these programs turning successful improves, at least as far as the participation on part of the caregivers is concerned.
As Antoniades quoted Taylor in her article, “Caregivers in general often report that their own health suffers because they have no time or energy to tend to themselves” (Antoniades, n.d.), a good majority of caregivers interviewed in our study also expressed lack of time for themselves and lack of time for any interaction with other patients’ caregivers. “We have no interaction with anyone, Time hi nai milta (We don’t get any spare time),” was stated by a caregiver. “Saara din hi nikal jaata hai, jab se aaya hoon ghar nahi gaya (I stay here the whole day long; have not been to home since I arrived here),” expressed another. Marks, Lambert, and Choi (2002) in their article also said that family caregivers are at greater risk for higher levels of hostility than noncaregivers.
A feeling of tiredness and fatigue is not uncommon as well, as the responsibility of caregiving puts the caregivers under a continuous nature of stress. “Sone ka time bhi mil hi nahi raha (We are not getting even sufficient time to sleep)” and “12-12 ghante ki night duty karte hain (This, the job of caregiving, is like a 12-hour night duty)” has been recorded from caregivers. Almost vegetative condition of the patients for a long time does not help the matter either. The job thus requires a lot of patience and courage, as the requirements of the patients are more. “Bahut pharak hai, yahan inko hosho-hawas nahi, badi dikkat hai. Jyada dhyan rakhna padta hai (There is a lot of difference, between these and other patients. These ones are not in their senses, which is very troublesome. They need more care than other patients).” This in turn leads to further stress on the minds of the caregivers. The results are in tandem with the study by Oupra, Griffiths, Pryor, and Mott (2010), in which they stated that family caregivers often report suffering both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. A number of other studies also report similar findings: Caregivers experience increased rates of physical ailments (Evercare, 2006) and have more tendency to gain weight and experience physical pain (Barrow & Harrison, 2005).
Levels of strain recorded among caregivers using Modified Caregiver Strain Index also show matching results. Highest frequency of caregivers was found to be in the moderate strain category, followed by the low strain and the high strain categories in that order. Average caregiver strain was also found to lie in the moderate strain category. More number of people in the moderate strain category than the high strain category was justifiable as medical and other support staff somehow share the caregivers’ burden, the settings of the study being hospital based. A lot of research, carried out on the factors responsible for these strain levels among caregivers around the world, points to the community support available to the caregivers as a key point.
In this study, more than 85% of the total caregivers said that they were being helped in caregiving by their relatives. These results are in consonance with the findings regarding relationship of the caregivers with the patients, suggesting strong ties among Indian families. One of the caregivers went on to state that it is the family members who are ultimately responsible for the recovery of the patients. “Sabse jyada jimmewari ghar waalon ki hai. Hamein hi karna hai sab kuch (The largest responsibility toward the patient is that of family members. We have to do everything for the patient).” The dominant role in taking care of the patients, in the western philosophy, is in contrast to this Indian point of view. In countries like United Kingdom, Switzerland, Germany, Austria, and Norway, the State has to take responsibility for providing for acute as well as long-term care. Thus, the Government takes over the role of the family, so that the younger lot is free for productive activities (Brodsky, Habib, & Hirschfeld, 2003).
On the other hand, such support from the State is not available here, and the family is the main support system for such patients. Less than 5% of the total caregivers received any kind of assistance from informal relations in their social contacts. For example, one of the caregivers said, “Iska to phir bhi main kar rahi hoon, per peechhe ghar me ladkiyan akeli hain (At least, I am here to look after him [my husband, admitted in the hospital], my daughters are alone at home with nobody to care for them).” “Gaon me panchayat ne milkar madad ke liye Badal Sahib ke aage arzi ki, per kuch nahi hua. (Leaders of the village even requested Chief Minister of the state for help but nothing happened)” was stated by another caregiver showing lack of interest in providing financial help to the underprivileged by the political players active in government circles. Similar findings of deficiencies in societal involvement have been observed by other authors and organizations from time to time, who have stated that the system of community-based services and supports for people with disabilities because of traumatic and other injuries and their family members is largely fragmented, inaccessible, and insufficient (National Council on Stability, 2009).
A gross disturbance in the lives because of burden of neurosurgery conditions, leading down to the levels of disintegration of the households, has also been reported by a few caregivers in the study. “Ghar per tala lag gaya, saare kaam chhut gaye, dihadi karta tha (The house is locked for a long time now, was a daily wager, now have no source of livelihood)” was stated by the caregiver of a poor patient. “Peechhe saara ghar barbaad ho gaya (I have lost everything in my life since the time we came here)” and “Peechhe kaam ka nuksan, yahan aakar khali baitha hoon. School jaate bacche kheton ko dekh rahe hain (Work has suffered a lot at home, I have been rendered idle here, my school going kids are looking after the farms now)” were expressed by caregiver of another patient, who had spent most of his life savings on his patient’s treatment. The statements express the anguish of the deepest levels and the burden of the highest order that a neurosurgical condition can cause in the life of a caregiver of such a patient. The findings are similar to those published by Lang, Neil-Dwyer, and Garfield (1999), where they stated that 56% of caregivers experienced a major change in lifestyle and 38% experienced a major change with respect to their work. The impact on the patient’s caregiver is profound—a burden perhaps not fully appreciated by the surgeon. Similar sentiments have been expressed by Neil-Dwyer, Lang, and Garfield (2001) in their article where they discussed Archbishop of Canterbury’s statement, “the gift of caregivers’ to their patients could be a matter of profound personal deprivation—loss of job and lively-hood, independence and esteem, the erosion of a self that has been built and nurtured and expected to flourish.”
Another factor of prime importance indirectly indicative of stress (physical and psychological) that caregivers must be under is their sleep pattern. More than 90% of the caregivers in this study stated to get less than 6 hours of sleep per day, that is, less than the desired amount considered normal for a healthy individual. According to the Centre on Aging Society, Georgetown University, “More than one-fifth (22%) of caregivers are exhausted when they go to bed at night, and many feel they cannot handle all their caregiving responsibilities” (Center on Aging Society, 2005). Similar findings were reported by Happe and Berger (2002) on caregivers of patients with Parkinson disease, when they reported that frequent sleep disturbances were reported by 27% of all spouses, and by Creese, Bedard, Brazil, and Chambers (2008) and McCurry, Logsdon, Teri, and Vitiello (2007) in their articles on caregivers of patients with dementia and Alzheimer. In contrast, only 60% of the total caregivers accepted that the duration they get to sleep is not sufficient to relax, whereas about 80% of them had denied caregiving being a burden on them at all. “Thakaan ki kabhi maine pervaah nahi kari, door jati hoon to aur bechaini aati hai (I have never cared for myself as it is all the more distressing to be away from him [my patient])” was expressed by a caregiver.
Overall, thus, only one fifth of the total caregivers in the study regarded caregiving as a burden, be it physical, social, psychological, or financial. Most considered it more of a duty than an obligation. Verbatim responses clearly projecting altruistic behavioral tendencies were recorded. Caregivers were more concerned for the well-being of their patients, even at the cost of their own health. Statements like “Time mile to 24 ghante baithenge, bhagwan ne mauka diya hai, karna to hai (God has provided us a chance to give care, will be providing it twenty-four hours a day if need arises),” “Khud ka to koi nahi, bas ye theek ho jaayen (I am not worried about myself; just want him [my patient] to get alright)” and “Doctor ne to operation kar diya, care to hamara farz hai (Doctor has already operated on the patient, now it’s our duty to take care of him)” were commonplace. Schubart et al. (2008) had similar findings on caregivers when they reported that the family caregivers provided extraordinary uncompensated care involving significant amounts of time and energy for months or years.
With passage of time, an atmosphere of fatigue and frustration is very likely to build up around the caregivers, as they tend to ignore their own physical and emotional needs. The diversion of resources for caregiving is likely to compromise on needs and aspirations of the other family members, which often leads over a period of time to a feeling of resentment against the patient (Bains & Minhas, 2011). The frustration that develops because of caring for long durations affects both the quality of care as well as interpersonal relationships negatively, which may lead to deterioration in the health of the caregiver itself (Narum & Transtrom, 2003). Similar findings have been obtained in our study, showing that the burden of caregiving has a great deal of potential to affect the lives of the caregivers and their patients adversely, as family caregivers have a significant contribution in nursing care of their patients. Although social, psychological, and economic fallouts because of inadvertent neurosurgical conditions are unavoidable, efforts need to be made to reduce the potential complications of the issues arising because of the development and progression of “burden of caregiving” in caregivers.
Bains P., Minhas A. S. (2011). Profile of home-based caregivers of bedridden patients in North India. Indian Journal of Community Medicine, 36 (2), 114–119.
Bains P., Singh T., Singh A. (2010). Status of home based care provision to bedridden elderly in Chandigarh. Journal of the Indian Academy of Geriatrics, 6 (1), 9–13.
Barrow S., Harrison R. A. (2005). Unsung heroes who put their lives at risk? Informal caring, health and neighbourhood attachment. Journal of Public Health (Oxford), 27 (3), 292–297.
Brodsky J., Habib J., Hirschfeld M. J. (Eds.). (2002). Long-term care in developing countries: Ten case-studies. The World Health Organization Collection on long-term care. Geneva, Switzerland: World Health Organization.
Brodsky J., Habib J., Hirschfeld M. J. (Eds.). (2003). Key policy issues in long-term care: World Health Organization Collection on long-term care. Geneva, Switzerland: World Health Organization.
Center on Aging Society. (2005). How do family caregivers fare? Caregivers of older persons: Data profile (Vol. 3).
Creese J., Bedard M., Brazil K., Chambers L. (2008). Sleep disturbances in spousal caregivers of individuals with Alzheimer’s disease. International Psychogeriatrics, 20 (1), 149–161.
Happe S., Berger K. (2002). The association between caregiver burden and sleep disturbances in partners of patients with Parkinson’s disease. Age Ageing, 31 (5), 349–354.
Lang D. A., Neil-Dwyer G., Garfield J. (1999). Outcome after complex neurosurgery: The caregiver’s burden is forgotten. Journal of Neurosurgery, 91 (3), 359–363. doi:10.3171/jns.1999.91.3.0359
Marks N., Lambert J., Choi H. (2002). Transitions to caregiving, gender, and psychological well-being: A prospective U.S. national study. Journal of Marriage and Family, 64 (3), 657–667.
McCurry S. M., Logsdon R. G., Teri L., Vitiello M. V. (2007). Sleep disturbances in caregivers of persons with dementia: Contributing factors and treatment implications. Sleep Medicine Reviews, 11 (2), 143–153.
Narum L., Transtrom N. (2003). Caregiver stress and coping: The journey through caregiving. The North Dakota Family Caregiver Project, North Dakota State University.
National Council on Disability. (2009). The current state of health care for people with disabilities. Washington, DC: Author.
Neil-Dwyer G., Lang D., Garfield J. (2001). The realities of postoperative disability and the carer’s burden. Annals of the Royal College of Surgeons of England, 83 (3), 215–218.
Oupra R., Griffiths R., Pryor J., Mott S. (2010). Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in Thailand. Health and Social Care in the Community, 18 (1), 10–20.
Scharg A., Hovris A., Morley D., Quinn N., Jahanshahi M. (2006). Caregiver-burden in Parkinson’s disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism and Related Disorders, 12 (1), 35–41.
Schubart J., Kinzie M., Farace E. (2008). Caring for the brain tumor patient: Family caregiver burden and unmet needs. Neuro-Oncology, 10 (1), 61–72.
Taylor S. (2006). Health psychology (6th ed.). New Delhi, India: Tata McGraw-Hill Education.