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 .
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 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 .
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% ) .
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 . 

all caregivers of patients who were registered with the clinic for at least 6 months prior to the death of the patient.patients living in jaipur city.the interview was conducted between 3 and 6 months of the death of the patient . 
 
all caregivers of patients who were registered with the clinic for at least 6 months prior to the death of the patient .
the interview was conducted between 3 and 6 months of the death of the patient . 

sixty interviews were conducted through a 4560 min interaction with an experienced counselor ( tm , mc ) who was not involved in the care of the patient or his family . of these
a semistructured questionnaire format was used to ensure that all domains were covered . the conversation with the caregivers
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 .
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 .
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 .
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 .
twenty icg were the spouse of the patient , fourteen were children , four were parents , and two were siblings .
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 ) .
( icg 13 ) 95% of our caregivers had a plan of action for an emergency .
seventy - one percent felt the need of some training in  care giving  mainly in nursing issues ( 65% ) .
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 .
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 ? 
( 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 ?
 ten respondents said  yes  : during the last days ( 4 ) when her condition deteriorated ( 4 ) when he seemed to be really suffering ( 2 ) .
the icgs shared their worries and anxieties with family ( 24 ) friends ( 20 ) and their spouse ( 12 ) .
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 five percent of caregivers also felt that they had reduced opportunities of career advancement due to their care - giving role .
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 ?
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 .
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
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 ) .
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 ) .
( icg 13 ) 95% of our caregivers had a plan of action for an emergency .
seventy - one percent felt the need of some training in  care giving  mainly in nursing issues ( 65% ) .
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 .
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 ?
 ten respondents said  yes  : during the last days ( 4 ) when her condition deteriorated ( 4 ) when he seemed to be really suffering ( 2 ) .
the icgs shared their worries and anxieties with family ( 24 ) friends ( 20 ) and their spouse ( 12 ) .
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 .
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 .
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
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 .
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
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 ,
identified six categories : psychological , informational , patient care , personal , spiritual , and household .
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 .
population 82% were satisfied with the services of the palliative care department 17% felt the lack of home care services .
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 .
the care giving experience drained them of energy and enthusiasm ( 45% ) and affected interactions with other family and friends ( 42% ) .
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 .
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
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 .
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
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 .
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 .
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 .
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 .
 aims : to assess the needs of informal caregivers of terminally ill cancer patients.materials and methods : fifty four informal caregivers of patients registered in our palliative care service were interviewed 36 months after the death of the patient with the help of a semistructured questionnaire covering the physical , medical , psychological , social , and information domains.results:most of the caregivers were middle aged and had no prior experience of care giving . 
 the caregivers were satisfied by the information and medical support provided to them by their treatment team . 
 most had an  emergency plan  . 
 caregivers had unmet needs including homecare , psychological support , and financial help.conclusions:informal caregivers provide most of the nursing and psychological support to the patient 
 . however , palliative care services need to recognize that the caregiver too may need psychological and technical support . 
INTRODUCTION
MATERIALS AND METHODS
Credibility
RESULTS
Medical needs
Psychological domain
Financial needs
Information needs
Social needs
Unmet needs
DISCUSSION
CONCLUSION