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Involvement of the family members in caring of patients an acute care setting A Bhalla1, V Suri1, P Kaur2, S Kaur21 Department of Internal Medicine, Post Graduate Institute of Medical Education and Research, Chandigarh, Punjab and Haryana, India 2 School of Nursing, Post Graduate Institute of Medical Education and Research, Chandigarh, Punjab and Haryana, India
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0022-3859.143962
Background: Family members are critical partners in the plan of care for patients both in the hospital and at home. Involving the members of the family in acute care can help the nursing staff in emergency. The present study was aimed to find out the role of the family members while caring for the patients admitted in emergency unit of a tertiary care hospital. Materials and Methods: A total of 400 family members of the patients were conveniently selected. Only one member per family was interviewed and their role in taking care of the patient in acute care setting was evaluated. Results: The mean age of patients admitted in acute care setting was 46.6 yrs ± 18.8 with the age range of 18-84 years. Majority (39%) of the patients were in the age group of 31-60 years. More than half of the caregivers of patients were males and 88% of them were first-degree relatives. The major tasks performed by the caregivers during the patient care was communicating with doctors/ nursing staff (98%), cleaning and dressing the patient (94%), feeding the patient (90%), procuring medication and other supplies (88%), administering oral medications (74%), changing position and helping for back care (65%), shifting the patients for investigations (60%), collecting reports (35%) and providing physiotherapy (25%). Conclusions: The results of the study concluded that family involvement in acute care setting can help the nursing staff in taking care of the patient in acute care setting and it also provides the opportunity for preparing them for after care of the patients at home following discharge. Keywords: Acute care setting, caregivers, emergency care, family support
Families are the most central and enduring part of any person's life. [1] In many cultures, illness is a family affair and family members play an important role in care-giving. [2] In countries where the family institution is on the wane, there is an increased incidence of social unrest and lack of social support. [3] A caregiver is an unpaid individual (a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks. Formal caregivers are paid care providers providing care in one's home or in a care setting (daycare, residential, care facility, etc). Caregivers provide many kinds of help to the care receivers ranging from assistance with daily activities to running errands and providing company/emotional support. Providing care to someone whether full time or part time, formal or informal takes a huge toll, both physically and emotionally. Allowing the family members to take care of the critically ill patients brings them together emotionally and helps the patients feel comfortable in unaccustomed setting of a hospital emergency. Although there are very many disadvantages of allowing outsiders into an acute care setting but they can help share the load of nursing staff taking care of the patients. Health care providers should be willing to share the act of caring with family members. [2] In India, lack of adequate trained manpower in hospitals increases the dependency on the family for taking care of the hospitalized ill patients in acute care setting. In the developed world too, , there is an increasing tendency to involve family members into caring for the patients so as to make transition from acute care to after care smooth. [4] In this study we looked at the support system, in the form of an informal caregiver, available to a critically ill patient admitted in the busy emergency of a tertiary care center in North Western India. We also assessed the problems faced by the caregivers during the study period.
Ethics: The study protocol was approved by the institutional review board and written, informed consent was taken from all participants. and study facility: A cross sectional study was conducted at the emergency department of a tertiary care center. The emergency department at our center caters to medical, trauma and surgical emergencies round the clock. Participants and selection criteria: The study population comprised of all patients reporting to the emergency medical, emergency surgical outpatient department and advanced trauma center. Only the patients in the emergency outpatient area were planned for inclusion, which comprises of the receiving area as well as the emergency observation unit. Patients in the wards and high dependency unit were excluded from the study. Fifteen patients (first 5 in each area) were planned to be recruited daily over 30 days period for the study, however, only 429 patients and primary caregivers could be included. Only one caregiver per patient was interviewed. Study instruments: The tools developed for data collection included identification data sheet which consists of socio demographic variables of patient and caregiver. Leading questions were asked by the interviewer regarding the help provided/tasks carried out by the caregiver present at the patient's bedside. The areas covered were immediate care of the admitted patient (feeding, dressing, shifting) and running errands (bringing medication, sending samples for investigation, collecting reports etc). The caregivers were also asked about the problems faced by them when caring for the patients in the acute care setting. Statistical analysis: The data was analyzed by using descriptive and inferential statistics. The results are expressed as percentages. The chi-square test was used to analyze activities and gender differences. A P value of <0.05 was considered significant.
Demographic details: Our center in 2013 received 37, 103 new patients in the emergency at an average of 101 new patients daily. A total of 22,525 patients were discharged with an average stay of 16 ± 8.5 hrs. A total of 12,032 patients were admitted in the various wards and intensive care units from the emergency with 2,547 deaths. One hundred nursing staff, 16 senior residents (post MD/MS), 45 junior residents (MD residents) manage the emergency areas by rotation. A total of 429 patients and their caregivers were included in this study over a period of 1 month. The mean age of the patients was 38.27 yrs ± 11.5 SD (18-70 years). The details of demography are provided in [Table 1] and [Table 2]. Twenty nine care givers declined consent.
On an average 2.5 ± 1.5 family members/friends were present in or around the health care facility. Care of the patient: A total of 65% of the caregivers were staying with the patient at the time of development of the illness and were aware of the progression of the illness. The remaining, were were not presently staying with the but were aware of the co-morbidity and had been actively involved in caring after they were brought in. A total of 48% had spent 24-48 hours in taking care of the patients and another 35.6% had spent between 48 and 96 hours. Around 70% of the patients were totally dependent on the caregivers and 18% were partly dependent. A total of 86% of the caregivers had a mobile phone to communicate with other family members. The major task performed by the caregivers during the patient care was communicating with doctors/nursing staff (98%). The family members present at the time of interview had provided the history and 60% of them were able to provide update on the illness in last 12 hours. The other activities are tabulated in [Table 3].
Tasks performed by gender: When we looked at the tasks performed by the caregivers based on the gender, it was observed that female caregivers were more comfortable in taking care of the patients at the bedside (personal care, helping the nurses in administering drugs), while males were more involved in running errands (fetching medication, taking samples to the laboratory, collecting reports and shifting the patient). This difference was statistically significant (P = 0.028). However, there was no difference in the activities of the caregivers based on age, the rural-urban background, the literacy level and relationship with the patient. Challenges faced by caregivers: The major problems faced by the caregivers were related to communication with the healthcare professionals and responding to patients needs. The other major problems were related to infrastructure like overcrowding, lack of privacy and inadequate facilities for the caregivers [Table 4].
The need for social support system is felt the most during illness and is maximum in the acute care settings. In the past, various studies have examined the needs and involvement of family members in the care of their hospitalized elderly relatives in acute care settings. [5],[6],[7],[8],[9] In recent years, family members as informal caregivers have emerged as important members of the patient's healthcare team. Not only do they provide assistance associated with activities of daily living, they frequently also perform many other activities related to daily living of the patients. Family members have a right to support their hospitalized relatives. [5] These complicated care giving activities may produce strain on caregivers which includes the physical, psychological, social, and financial problems experienced by family members caring for impaired adults. [10] Studies have shown that most of the caregivers are mostly the first-degree relatives of patient. The patient's primary caregiver is defined as the person who had the most responsibility for and provided the most care to the patient. The burden falls most heavily on spouses and parents; adult children and secondary kin are less affected. In one such study on home-based caregivers of bed-ridden patients 54% of the key caregivers were blood relatives of the patients out of them 29% were children of patients. [11] In the present study it was found that first-degree relatives (88%) were often the caregivers of these patients, and most of them experienced moderate burden in their care giving role. The caregivers data from the USA suggests that caregivers are found across the age span, the average age of caregiver is 48.0 years; about 51% of caregivers are between the ages of 18 and 49. [12] Very similar findings are noted in our study too. Younger caregivers were taking care of their parents/children while elderly caregivers were more likely to care for the spouse. The caregivers data from the USA suggests that male caregivers provide more hours of care than female caregivers whenever they take up the responsibility. [13] This trend was evident in our results too. The data also suggests that proportionally more male caregivers are likely to provide care to younger family members and female caregivers to the elderly. [12] In our study this division was not evident. Primary caregivers in India are not very well educated. In current study only 33% of them were educated beyond 10th standard. This is in contrast to the results of another study from Taiwan were majority (67%) of the caregivers were graduate and postgraduate. [14] The education level in caregivers may be an important factors when we have to consider educating them regarding care of the patients to make transition from hospital care to home care easier. [14] In the present study males outnumbered female caregivers in the acute care set up but it is well known that women are much more likely to take up the "informal healthcare" of the sick and the elderly at home. [15] This is especially true for Asian women as well as Asian American women. [12],[16] It is also assumed that other than the physicians, males are less likely to take up health care responsibilities of sick and the elderly, however, our study findings are different. [17] It is well known that male members are less likely to help patients in personal care activities but times are changing our study results are different. [12] The fact that more male members were present at the bedside than females could be due to the fact that males are likely to take up responsibilities where lot of physical work is required, especially in the acute care setting. In our study male members were involved in running errands in the acute care setting (paying fees, sending samples, getting medication and shifting patient), while female members were more involved in personal care at the bedside. We also observed that male members did also help the healthcare providers in patient's personal care activities. Research suggests that the number of male caregivers is increasing even in western countries due to a variety of social demographic factors but this data is limited to the caregivers at home. [18] It is possible that the ratio may be reversed at home since more and more female members would be available at home and can take care of the sick or elderly while males go about performing their work outside home. Since we have not studied this aspect in our patients, we may not be able to comment on it. The caregivers generally need information, emotional support, a ray of hope, a caring attitude of the physicians and the need to be close to their relatives. [19] This is what was reflected in the problems faced by the relatives in the acute care setup. The fact that our emergency was overcrowded, the caregivers felt that as shortcomings in the infrastructure leading to an unclean, overcrowded area with lack of privacy. This study has helped us and the administrators in understanding the dynamics of the caregivers in our setup. This study points to the fact that subtle changes in the healthcare setting and the health care workers attitude towards the caregivers can bring a substantial change in the way the caregivers perceive a particular healthcare setup like ours. This information can help the healthcare setups become friendlier to the patient and their caregivers.
Family members are an integral part of health care team of a sick patient in acute care setting in India. Informal care giving by first-degree relatives takes away a lot of burden from the formal caregivers (health care workers). This may leads to smooth transition from acute care to home care setting but the overcrowding can take a toll on the health care infrastructure. The treating physician and the nurses can utilize the informal healthcare force for better patient care. The healthcare setup can use the caregivers dynamics in bringing about changes in the infrastructure and functioning of the setup so as to make it more patient and caregiver friendly.
[Table 1], [Table 2], [Table 3], [Table 4]
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