What does the informal caregiver of a terminally ill cancer patient need? A study from a cancer centre
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0973-1075.92335
Source of Support: None, Conflict of Interest: None
Aims: To assess the needs of informal caregivers of terminally ill cancer patients.
Keywords: Cancer, India, Informal caregiver, Needs, Terminally ill
Palliative care in India is still in its infancy. Many centers are struggling to find the resources to start services. Making morphine freely available to patients is an uphill task. A recent review studied palliative care service availability in different parts of India and found that in some states there is a ratio of one service for 1, 66, 198 people.  We undertook this study on the needs of informal caregivers because the role of the family in the Indian setting is paramount considering the availability of palliative care services.
The brunt of care of terminally ill patient is borne by the family. They usually have no training, experience or preparation for this task which is enormously taxing. Responsibilities of caregivers have extended beyond functions such as transporting patients to hospital, keeping appointments with physician, and helping patients in the activities of daily life. More technical jobs such as intravenous injections, maintaining oxygenation of patient at home, and wound care are few stressful but routine jobs for family caregivers. 
The caregiver can be seen as holding a unique position of both providing and needing support. The World Health Organization  promotes the importance of families receiving input from palliative care services, identifying the patient and family as the unit of care.
Clinicians need to recognize that patients and their caregivers react to cancer as a unit and, as a result, they both have legitimate needs for help from health care professionals. When caregivers' needs are not addressed, their mental and physical health is at risk, and patients are denied the opportunity to obtain optimal care from a well-prepared family caregiver. Programs of care directed only toward patients are seldom sufficient to meet patients' needs because so much of the patient's care depends on family caregivers. To provide optimal comprehensive cancer care, the care plan must focus on these patient-caregiver units. 
Family caregivers have received very little attention in the published literature from India. The literature shows that little is known about Indian family member's experiences of being caregivers, as well as their expectations of the palliative care services. 
In a Dutch study, Osse et al. found that most caregivers would like professional attention for four or five specific issues usually related to their competence as caregivers. Brazil et al. reported that five most valuable services that the caregivers would like to have are in home nursing care (90.7%), medical specialist (46.4%), family physician (45.6%), housekeeping (23.6%), and religious support (11.3%). The caregiver himself may need medical attention. Ramirez  reported a prevalence of depression in 39% and anxiety in 46% caregivers. Clayton et al.  noted a desire to restrict the patient's access to information on the part of the caregiver.
After ethics committee approval for the study, all caregivers of patients registered with the Palliative Care Medicine department in the last 15 months were screened for the study. For the purpose of this study an informal caregiver (ICG) was defined as a family member who provides care for a terminally ill loved one.
The department of palliative care medicine is run by the department of anesthesia through outpatient, day-care, and inpatient services. Three senior physicians, seven resident doctors, a dedicated palliative care nurse, and a counselor/social worker comprise the department.
Sixty interviews were conducted through a 45-60 min interaction with an experienced counselor (TM, MC) who was not involved in the care of the patient or his family. Of these, four were not included in the analysis because of incomplete data. A semistructured questionnaire format was used to ensure that all domains were covered.
The conversation with the caregivers was recorded verbatim. The interviewer also maintained field notes to increase the value of the interview, the context of certain answers or comments and comfort level of interviewees. The caregivers were given enough time to speak on the issues so that so that themes hitherto unobserved or unexplored could emerge and be analyzed.
A review of literature was done to help make a comprehensive questionnaire. The interviews were conducted by an experienced counselor who was not involved in the care of the patient and the interviews were conducted in a safe place outside the premises of the palliative care unit.
The interviews were recorded verbatim. This record along with the field notes were analyzed by the team immediately after the interview.
Sixty caregivers were interviewed; four were not included due to incomplete data. Most of the informal caregivers (36 in the 30 to 60 year range) and patients (36 in the 20 to 60 years range) were middle aged. Ten percent of the caregivers were grandparents above the age of 60. Twenty ICG were the spouse of the patient, fourteen were children, four were parents, and two were siblings. Most of the families (32) were nuclear. The needs were classified as medical, social, information, financial, and psychological needs.
While 82% were satisfied with the services of the palliative care department 17% felt the lack of home-care services. Families requested for home care by our hospital team, that is, a dedicated palliative home care service." It would really have helped if Dr. A and Nurse S could have seen my wife at home" (ICG 7). A major concern of the informal caregiver was "What should I do if my mother suddenly takes a turn for the worse. Whom should I call in an emergency?" (ICG 13) 95% of our caregivers had a plan of action for an emergency.
Ninety-two percent of our caregivers had no experience of care taking. Seventy-one percent felt the need of some training in "care giving" mainly in nursing issues (65%).
About 40% ICGs felt the need for an admission to a hospice/hospital. The majority felt otherwise. "I want to spend every minute with my mother" (ICG 46). Of the 22 ICGs who wanted institutional care, 14 thought their patient would receive better professional care, six had to travel too far for medical aid, and two felt unable to stand the deteriorating condition.
Sixty-eight percent caregivers had no time for self-care. The care-giving experience drained them of energy and enthusiasm (45%) and affected interactions with other family and friends. They also had a disruption in personal routines and restriction on leisure time (42%). Fourteen felt they were irritable, ten got annoyed more easily, and twelve complained of fatigue. "I keep getting up at night to see if she is still breathing (ICG 46)."
To the question "What was your psychological /emotional reaction to your patient's condition." Thirty-nine percent felt they were "tense" most of the time, 17% were anxious, and 32% were low/depressed. To the question, "Did you sometimes lose hope and interest in caring?" Twenty-six said "yes." (ICG 22) said "I felt my mother should be relieved of suffering and pain by any means Thirty ICGs said "no" "I wanted to help as much as possible, whatever I could do"(ICG 11).
To the question, "Did you sometimes feel that you wanted to be relieved of this duty?" 46 said "no." Ten respondents said "yes": during the last days (4) when her condition deteriorated (4) when he seemed to be really suffering (2). ICG 17: "I sometimes felt like leaving everything and running away from situation."
The ICGs shared their worries and anxieties with family (24) friends (20) and their spouse (12). (Twenty of the patients were spouse of the ICGs.) Thirty patients were living in nuclear families and 24 in a joint family set-up. The source of strength for the patient and family was mainly religion (36/30) and family (20/14), respectively.
Twenty caregivers had financial difficulties due to the patient's illness and care. Only one patient had reimbursement from his employer for treatment and medication. Twenty five percent of caregivers also felt that they had reduced opportunities of career advancement due to their care-giving role. Thirty informal caregivers needed financial help from family or friends.
Ninety percent caregivers felt they were aware of the patient's condition and 96% felt they were informed of all treatment options.
To the question "Do you think the patient should know the status of disease and prognosis? Twenty-eight ICGs were of the opinion that the information helped the patient. Ten felt that the information given should depend on the individual and 18 felt that the informed patient will be better prepared mentally for end of life. Fifty percent felt that it worsens the patient's condition in that it could cause depression (12) psychological disturbance (8) premature death (8). Thirty-five percent ICGs needed help in problems of communicating disease status and prognosis with their loved one.
Only sixteen of our caregivers had time to attend social gatherings. Forty did not have time to socialize. This was despite the fact that 52 of ICG were not sole caregivers. The visit of family and relatives were a source of help to 40 of our ICGs. It helped in psychological support (24), boosting the morale (16), and preventing depression (16). Eighteen ICGs received support from socioreligious organization. During the terminal phase of the illness, the ICGs of 34 patients were able to organize a family get together on the request of the patient.
About half of the respondents had young children. Eight of them felt they had enough time for their children. Twenty caregivers could not devote enough time to their children. They felt their care-giving role had affected their children's studies (10) general care (8) health (2). Similarly 14 of 20 caregivers felt they could not spend enough time with their spouses. Twenty-four ICGs felt their care-giving role affected their other relationships and interactions.
Fifty-two of 56 respondents felt that the patient would benefit from more counseling. Eighteen ICGs were of the opinion that improved nursing care and availability of nurses would have improved patient care. Forty ICGs felt the need for training in different aspects: nursing care (26) how to handle/position the patient (14).
Caregivers experience physical, psychosocial, and economic "burdens" as a result of their "care giving." In Osse's study,  the top twenty caregivers need included fears and emotional burdens. Most of them did not ask for more professional attention than they were receiving. Many needed support for symptom management and availability and coordination of service.
Shanmugasundaram et al. in a study on terminally ill Indian migrants in Australia identified six categories: psychological, informational, patient care, personal, spiritual, and household .Caregivers' greatest needs were informational and psychological. Significant correlations between certain caregiver characteristics and caregiver needs and between caregiver needs and patients' activity levels were found. Their findings indicated the urgent need for nurses, who usually provide support for caregivers, to establish specific programs and services to meet the identified and unmet informational and psychological needs of caregivers of at-home patients with cancer. They also recommended frequent reassessment of caregiver needs.
For our study, population 82% were satisfied with the services of the palliative care department 17% felt the lack of home care services. A major concern of our informal caregiver was the planning for an emergency. Ninety-two percent of our caregivers had no experience of care taking. Seventy-one percent felt the need of some training in "care giving" mainly in nursing issues (65%) and some (35%) needed help in problems of communicating disease status and prognosis with their loved one.
Sixty-eight percent caregivers had no time for self-care. The care giving experience drained them of energy and enthusiasm (45%) and affected interactions with other family and friends (42%). They also had a disruption in personal routines and restriction on leisure time. Farber et al.  and Stajduhar and Davies  reported similar findings. Ramirez et al.  reported prevalence of depression in 39% and anxiety in 46%. Fifty percent of caregivers of terminally ill cancer patients report chronic illness. 
Ratnakar et al.  found that the family caregivers of advanced cancer patients undergo anxiety and depression associated with stress leading to increased oxidative stress and glomerular permeability to proteins. These changes might have health implications, warranting appropriate stress management counseling for them. Yousafzai
et al.  in the study on 200 caregivers of cancer patient in Pakistan observed that a significant number of caregivers were suffering from severe stress.
In our study, many caregivers also had a burden of feeling that they were unable to take care of their children/spouses due to their responsibilities as a caregiver Emmanuel et al.  reported that in ten households (of 11) children were obliged to miss school due to the illness. In the same study, all respondents indicated they would use trained caregivers to help with the care burden if available. Nine respondents thought that use of trained caregivers would have reduced or prevented some of the household's illness-related changes.
In a pilot study on patient-caregiver dyads conducted in Trivandrum by Emmanuel et al. researchers found that all eleven patients were obliged to give up work as a result of illness. In many families, the caregiver also had to change work habits. All respondents stated illness had forced them to sell assets.
According to a 1994 report from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment, or SUPPORT study, one-fifth of all family members of seriously ill patients had to quit work or make another major life change in order to care for their family member. Almost one-third reported the loss of all of their family savings, and 29% reported the loss of the major source of family income. 
In India, this could vary in view of the different systems of health-care provision by the government and private hospitals. In our study, only one patient had reimbursement from his employer and 30 ICGs had significant financial issues.
A qualitative systematic review on knowledge and information needs of informal caregivers in palliative care settings revealed that the strongest inadequacy was in information regarding pain management. The significance of effective communication and information sharing between the patient, doctor, and caregiver was emphasized. 
The difficulty of negotiating the concerns of the family members while also respecting the needs of the patient adds complexity to the task of discussing prognosis and end of life care issues with terminally ill cancer patients. The informational needs of caregivers may be different from those of the patients themselves with regard to these topics.  A desire to restrict the access of the patient to information was reported by the health professionals they interviewed. About half of our respondents also were in favor of restricting information to the patient.
Harding and Higginson  reviewed literature for effective interventions for ICGs. Twenty-two interventions were identified, comprising home nursing care (four), respite services (three), social networks and activity enhancement (two), problem solving and education (three), and group work (10). They concluded that carers interventions should aim to be feasible (grounded in the theory and evidence of interventions) acceptable (in a format seen as useful and appropriate by carers) accessible (carers must be able to access services should they wish to do so) and effective (shown to improve intended outcomes for carers using rigorous evaluation methods).
The literature has also begun to identify which carers are likely to experience negative outcomes: particularly younger carers, women, and those caring for patients at diagnosis and end stages.  With limitation of resources interventions may be targeted at vulnerable caregivers.
Our study has limitations: the sample size is very small. Patients description of their emotional status was recorded verbatim therefore anxiety, distress, or being tense was not measured by a standardized tool. This study has been conducted in a tertiary care private hospital on an urban population and the result may not be generalized.
As Currow  says "Ultimately people connecting in a real and meaningful way with other people is probably the only way that each of us can confront suffering and not have it destroy us. Creating an environment where people can begin to, or continue to connect with others at a level that is meaningful for all concerned is a pivotal starting point in dealing with suffering in any encounter with people at the bedside and a sense of helplessness to relieve not only the patient's suffering but also that of the people to whom the dying person is close."
The ability of a family to take care of a terminally ill cancer patient is contingent on material, social, and professional support. Rajagopal and Joranson  estimate that 0.4% of patients needing palliative care get pain relief. This is not counting the million of "hidden patients" to whom the dying patient is close. This small research provides some insight into caregiver needs: physical, medical, psycho social, and communication/information components. Informal caregivers need home care/trained caregivers/nursing care. Palliative care services need to think of evolving a ICGs program that includes basic nursing skills and emergency medical plans. The psychosocial support of patient and their caregivers should also be given priority especially as families grow smaller and nuclear.
The authors acknowledge the help and technical support of Ms. Laxmi Shekhawat and Mr. Rajveer.