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Comfort level of caregivers of cancer patients receiving palliative care

ABSTRACT Objective: To verify the association between the level of comfort of the caregiver and socio-demographic variables related to caregiving, and the patient’s functional status and symptoms. Method: Cross-sectional study with non-probabilistic intentional sample. The instruments Palliative Performance Scale (score 0 to 100%), Edmonton Symptom Assessment Scale (symptom scores from zero to ten) and Holistic Comfort Questionnaire (total score ranging from 49 to 294 and mean score from 1 to 6) were used. The relationship between comfort scores and independent variables was calculated by multiple linear regression. Results: Fifty informal caregivers participated in the study - 80% were female, 32% were 60 years old or older, 36% were children of the patient, 58% had paid work and 60% did not have help in the care. The mean overall comfort was 4.52 points. A better functional status of the patients was associated with higher levels of comfort of the caregivers. Older caregivers who received helped in the care activities presented higher comfort scores. Conclusion: The level of comfort of caregivers of cancer patients receiving palliative care was associated with socio-demographic variables and patients’ functional status and symptoms.

the care offered to this relative and to develop means to support the nucleus of care. The use of holistic tools can improve the care provided to the caregiver in clinical practice and emphasize that the multidimensional aspects related to caregivers' comfort have received little attention in the literature (9)(10)(11) .
The concept "comfort" still does not have a consensual definition in the literature, but it can be defined as a subjective state of well-being occurring at any time during the health/disease process. According to a Theory of Comfort created in 1991 (12) , comfort comprises four contexts of human needs: physical comfort refer to bodily sensations (such as pain); psychospiritual comfort relates to internal self-awareness (such as faith, self-esteem and sexuality); socio-cultural comfort relates to interpersonal relationships (such as relationship with family, financial issues and relationship with the health team); and environmental comfort relates to external surroundings (such as lighting, odor and temperature) (12)(13) .
The WHO establishes that continuous care must be extended to family members. However, according to the literature, studies addressing caregivers are recent, with more of 70% of them published after 2008 (14) . Informal caregivers of cancer patients receiving palliative care were included in the research, when they did not get paid for this function, they were 18 years old or older and were identified as primary caregiver by the patient and/or their relatives. Caregivers of inpatients or patients who were in their first appointment with the Palliative Care service were excluded from the study. During this period, there were approximately 120 cancer patients who were followed-up in the palliative care service. Thus, the sample consisted of the inclusion criteria in the period of the curricular internship of one of the researchers.
The data were initially collected through a questionnaire with socio-demographic characteristics.
Afterwards, the Palliative Performance Scale (PPS), Edmonton Symptom Assessment Scale (ESAS) and the Holistic Comfort Questionnaire -caregiver (HCQcaregiver) were used.
The PPS is an instrument developed in 1996 by the Victoria Hospice, Canada, with the objective of assessing the functional status of the patient and understanding the evolution of the disease. The scale has eleven levels, from zero to 100%, divided in intervals of 10. A 100% level means that the patient is fully functional, and zero means death (15) .
ESAS is an important tool for symptom assessment developed in Edmonton, Canada in 1991 and translated and adapted for use in Brazil in 2013. It is a small questionnaire with nine specific symptoms, divided in physical symptoms (pain, tiredness, nausea, drowsiness, lack of appetite, shortness of breath), and psychological symptoms (depression, anxiety and well-being). Each symptom is rated from 0 to 10, zero meaning that the patient is at the best state possible and the symptom is absent and 10 that it is of the worst possible severity (16) .
The HCQ-caregiver was created in 2001 (17) and validated in Brazil in 2015 (18) . It is an instrument that evaluates the comfort of these professionals unidimensionally. This evaluation serves as basis for planning better interventions in the care provided to the caregiver. Higher total scores indicate a higher level of comfort. If you add up the scores assigned to each sentence of the questionnaire, the total score of the instrument ranges from 49 to 294 points. Many studies use the average score that ranges from one to six points, which is the total score divided by the 49 questions. The HCQ-caregiver comprises four dimensions of comfort: the physical, the psychospiritual, the socio-cultural and the environmental. The maximum score that can be obtained in the physical comfort dimension is 42, in the psycho-spiritual dimension it is 90, in the socio-cultural dimension it is 96 and in the environmental dimension it is 66. Some questions were constructed as negative sentences. For those to be statistically evaluated and considered in the total score of the instrument, it is necessary to reverse the result at the time of tabulation (17)(18)(19) .
The questionnaires can be self-administered or applied by interviewer. In this study, by preference of the participants, the questionnaires were applied by the

Results
In the sample of 50 informal caregivers most were female (80%). The care of children (36%) and participation of caregivers aged 60 years or over (32%) were highlighted. The caregiver's ages were from 18 to 80 years, with a median age of 52.5 years.
All caregivers reported they had a religion and lived with someone. Regarding the professional situation, 29 (58%) had paid work (not as caregiver). Regarding level of education, a median of eight years of study was found. The time since diagnosis, as well as the duration of care provided to cancer patients receiving palliative care, was from one to 240 months, with a median of 24 months. Of the total, 60% reported they did not receive assistance to perform the care.
All patients in the study had cancer. The most prevalent type of cancer was breast cancer, with nine cases (18%), followed by prostate and bowel cancer, with five cases each (10%), and uterus, lung and esophagus cancer, with three cases each (6%).
The PPS assessment showed that caregivers classified the functional status of the patients as 50 to 70% in 25 cases (50%), followed by 80 to 100% in www.eerp.usp.br/rlae maximum value was 100% and the minimum was 20%, with a median of 60%.
Regarding the ESAS, as scored by the caregiver, the patients had the following median scores: 6.5 for fatigue and lack of appetite; 06 for pain, anxiety and drowsiness; 05 for depression and malaise; 0.5 for nausea; and zero for shortness of breath.
The HCQ-caregiver presented a maximum score of 275 points and a minimum of 136 points, with a median of 230.5 points. The mean overall comfort of the caregiver, in this study, was 4.52 points: physical comfort It was evidenced that the higher the age of the caregiver, the greater their overall comfort score, which had a significant association (p=0.018). Each additional year in the age of the caregiver increases overall comfort by 1.35 points. In addition, help to deliver care had a significant relationship with comfort (p= 0.004). The overall comfort score is 43 points higher for those who receive help when compared to caregivers who do not have any assistance, according to Table 1.  Table 2.
The psycho-spiritual dimension has a significant association with the caregiver's age (p=0.012). The greater the age of the caregiver, the greater their degree of comfort and each additional year in the age of the caregiver increases their psycho-spiritual comfort by an average of 0.54 points. Receiving help for the care also demonstrates significant influence when associated with the psycho-spiritual dimension (p=0.019), since the psycho-spiritual comfort score is 13.23 points higher for those who receive help, as it can be seen in Table 3.
The PPS score was also significantly associated with  Table 3.

Discussion
In this research, as it can be found in the literature, the caregivers are predominantly female (80%) and in the age group of 60 years or more, which shows that care is still very frequently delegated to adult women (9,17,(20)(21) .
Regarding the degree of kinship, as found in other studies, children are the main responsible for care, followed by spouses, stressing that care still remains within the nuclear family (20) . In a study conducted in Campinas in 2010 with 133 caregivers, 43.1% of them were the children of the patients (19) .
According to other authors, religion is an important factor for maintaining the quality of life of the caregiver and the patient (22)(23) . It serves as support during moments of crisis, and it is important for coping, Gayoso MV, Avila MAG, Silva TA, Alencar RA.
adaptation and well-being. In this study, all participants reported having a religion; however, this aspect was not significantly associated with the comfort of the caregiver.
Faith is a way of finding strength to face the disease, even with the impossibility of healing (24) .
Regarding the professional situation, as found in other studies, most caregivers have a paid work, so care represents "second shift" situation. This reduces the caregiver's rest time, as in a study in Canada, which found that 42.9% of caregivers also had a paid work (20) .
The time since the diagnosis and the time since the caregiver initiated care are similar in this research, which was also found in a study carried out in São Paulo (9) .
A study carried out in Portugal considers duration of caregiving as a positive factor for the caregiver, believing that it generates mechanisms to cope and adapt to care activities, even though these variables did not demonstrate any significant statistical association with the caregiver comfort in this research (25) .
The most prevalent type of cancer in the study was the breast cancer, which, according to a 2015 study, is the most commonly found in women in Brazil and in the world, and the second most common in the general population (26) . Prostate cancer is the second most prevalent type of cancer in men and the fourth most common type in the world, after bowel cancer, which is the third most common in the world (2) . A study conducted in Germany in 2016 also shows breast, prostate and bowel cancers as the most prevalent (5) .
Among the symptoms presented by the patients according to the caregiver, pain and tiredness were the most common. However, statistically, the patients' symptoms did not influence the overall comfort level of the caregiver. Only tiredness had a negative association with the psycho-spiritual dimension. It was not possible to compare these data with other studies because of the lack of studies relating the patient's symptoms to the comfort or quality of life of the caregiver.
Regarding the level of comfort of the caregiver, a mean score of 4.52 points was found, a result similar to a study carried out in São Paulo in 2014. This can be associated with the characteristics of the service, which is specialized in palliative care and provides, in addition to hospital care, outpatient and home care activities.
However, this value is still far from reaching the desired score of 6 in the HCQ-caregiver (9) .
Nursing includes an ongoing process of assessing the needs of individuals. Literature considers comfort as one of the centers of this intentional evaluation, which leads nursing professional to constantly attempt to satisfy the basic needs of the individual and promote comfort. The fact that comfort is an individual experience related to the way each subject experiences and interprets situations, providing maximum comfort to individuals is a challenge difficult to achieve (12,27) . And this is true not only for caregivers of cancer patient. According to a study carried out in Lisbon with caregivers of patients with various chronic diseases, the mean general comfort score was 4.23, not reaching the maximum of the questionnaire (13) .
It was possible to perceive that receiving help in this care is a positive factor for overall comfort, because when the task is shared, the burden becomes lighter and the caregiver can have more time for self-care (11) . In literature, social support is considered an important factor for the quality of life of caregivers, influencing their emotional and physical health (28) . In the study, most caregivers do not have any help for this function (60%), a result different from a study conducted in Porto Alegre in 2015 (20) .
The nurse is an important actor in the construction of care plans aimed at promoting well-being and treating the informal caregiver not only as an ally in care, but as an individual that must receive care. The literature proposes