Caring ability of family caregivers of patients on cancer treatment: associated factors*

ABSTRACT Objective: To analyze the association between the caring ability of family caregivers of patients on cancer treatment with the demographic and clinical characteristics of the patients, as well as the sociodemographic characteristics of the caregivers and of the care provided. Methods: A cross-sectional study was conducted with 132 family caregivers of patients on cancer treatment whose data were collected through the Brazilian version of the Caring Ability Inventory and questionnaires characterizing patients, caregivers and the care provided. Student’s t, Mann-Whitney or Kruskal-Wallis tests were used at the significance level ≤5%. Results: Patients’ age was significantly associated with overall caring ability (p = 0.002) and the caregiver’s dimensions courage (p = 0.006) and patience (p = 0.009). Caregivers’ education was associated with overall caring ability (p = 0.028) and the dimensions courage (p = 0.008) and patience (p = 0.045). Marital status was associated with the overall caring ability (p = 0.020); and the patience dimension (p = 0.045) and the time providing care with the patience dimension (p = 0.027). Conclusion: Caregivers of elderly patients who have higher schooling and do not have a partner demonstrate greater caring ability.


Introduction
The Brazilian health situation is characterized by a process of accelerated epidemiological transition related to the fall of acute conditions and relative increase of chronic conditions (1) . Cancer, which is the second cause of death associated with chronic non-communicable diseases (CNCDs), is currently one of the most complex public health problems, given its epidemiological, social and economic magnitude (2) .
In addition to the high mortality rate, the consequences of CNCDs in Brazil and in the world have caused loss of quality of life and economic impact for families, the community and society due to the high degree of sequelae and disabilities that can affect the sick individuals (2) .
The process of illness, accompanied by dependency, demands adjustments in the family routine and the need for a situational transition, especially with regard to caring for the sick person. This caring is usually attributed to one of the family members, the caregiver (3)(4) , who assumes responsibility for care at home mediated by the love and affection relationships that bind him or her to the dependent person, However, they may be or not prepared and able to assume such attribution (5) .
In view of this, the responsibility and the commitment of care, when embraced by a person without preparation and previous orientations, may compromise the quality of care to be provided and bring physical and emotional changes to the caregivers themselves.
Thus, support and education actions fostered by nursing professionals may favor the development or improvement of the ability to care. Such ability is understood as the potential of the person who assumes the role of caregiver of a significant family member or person who is disabled. Within this perspective, we include cognitive, instrumental and attitudinal dimensions that can be identified and measured according to indicators of knowledge, courage and patience (6) .
Considering that articles on the translation and validation of the instrument used to evaluate the care ability, the Caring Ability Inventory (CAI) (7) into Brazilian Portuguese are recent and that the scientific production on this subject in our country is incipient, it was necessary to know the international researches evaluating this theme and using this instrument. To do so, we searched the bases Scielo, Lilacs, Ibecs, Medline, Pubmed and Scopus, using the terms "Caring Ability Inventory" OR "Inventário de Habilidades de Cuidado" OR "Inventario de Habilidad de Cuidado" in the field Words. When analyzing the objectives and results of the studies found, we verified that the instrument has been used to measure the care ability of several populations that perform the care activity, such as health professionals, nursing students and caregivers.
However, most studies have approached the caregivers, demonstrating the professionals' concern in knowing the abilities of these individuals to meet the demands of home care. in the initial approach.
The primary caregiver was defined as the family member with total or partial responsibility of care for the sick individual. In situations where there was more than one caregiver and they mentioned dividing care tasks the patient was asked who he/she considered his/ her main caregiver, and this indication was respected.  The demographic and clinical variables of the patients were age, sex, medical diagnosis, diagnosis time and dependence for activities of daily living, verified by the Barthel Index, which aims to measure the degree of assistance required for activities of daily living, ranging from "0" (totally dependent) to "100" (independent) (8) .
The medical diagnoses were organized according to the INCA classification of malignant tumors (9) . The CAI-BR aims to evaluate the abilities of an individual based on his/her own perception of his/her ability to provide care, taking into account instrumental and cognitive aspects. This scale comes from the Caring Ability Inventory (CAI) (6) , which was validated and translated into Spanish in 2005 (10) and into Brazilian Portuguese in 2016 (7) . The inventory consists of 37 items divided into three dimensions: knowledge (understanding of self and others), courage (ability to face the unknown) and patience (tolerance and persistence), with 14, 13 and 10 items, respectively. Responses are organized in a Likert-type scale, ranging from 1 to 5, in which 1 means "I strongly disagree" and 5 "I strongly agree." The total score and of each one of the dimensions of the instrument is obtained by the sum of the answers given to the items that compose it.
The mean (M) and the standard deviation (SD) were used to classify the scores into low, medium and high level of care ability, so that the SD interval below and above the mean was considered medium level. Below this value, it was considered low level and, above it, high level, according to the author of the original instrument (6) .
The reliability and validity of the original CAI were evaluated by Cronbach's alpha and test-retest, which obtained the values of 0.84 and 0.80, respectively (6) .
The Spanish version reports Cronbach's Alpha of 0.86 and a Pearson Correlation Coefficient of 0.66 (10) . In the Portuguese version, the Cronbach's Alpha obtained a result of 0.78 and the Correlation Coefficient a score of 0.76 (7) . In the present study, the internal consistency obtained for the total CAI-BR was 0.60. Regarding the care ability, the total CAI-BR scores and its dimensions knowledge, courage and patience showed that the family caregivers presented medium level of ability, as shown in Table 1.  In the analysis of the relationship between these variables (Table 3), it was found that schooling was associated in a statistically significant way with the overall caring ability (p = 0.028) and the dimensions courage Regarding the characteristics of care (

Discussion
The rapid process of demographic transition observed in Brazil represents a challenge for public health, since as the age advances, there is a progressive development of CNCDs, considering that these affect the populations of greater age (1) . This perspective can be identified by considering the predominance of advanced age patients undergoing cancer treatment, as evidenced in this study and in similar results described in the literature (11)(12)(13) . These findings are similar to those presented in an international study with elderly patients with chronic illness in home care, in which half of the participants had moderate dependence (15) . However, a national study of frail elderly living at home reveals that most of them is totally or severely dependent (16) . Both situations should be considered when analyzing together with the family of people on cancer treatment the conditions of care at home and the need for support for the primary caregiver.
Regarding family caregivers, the present study, like other studies with this population, identified that the majority was women, with a mean age of 48.68 years and with a partner (17)(18)(19) . This reinforces the social role of women still present in society, which comes from a historically determined construction and interconnected with the fact that women did not perform activities outside the home, which gave them greater availability -and learning possibility -for the care of the home, children and family (18) .
The low level of schooling evidenced among the participants of this study coincides with the literature, demonstrating the prevalence of family caregivers with less than four years of schooling or an average of five to eight years (16)(17)(18) . People with low schooling tend to dedicate themselves to household and other low-paid services, as society requires higher levels of education to enter in formal work (18) . Thus, low family income, an issue also observed in this research, may be related to this limitation as to the inclusion of the subject in the labor market and the consequent choice to move away from the work assignments to perform the care (20) , since hiring a caregiver is not feasible, especially in situations of prolonged dependence.
In this sense, regarding the time spent for care, the caregivers of this research have been dedicated to this activity for ten months, on average. On the other hand, considering previous studies, the care time of the majority of caregivers exceeds three years, some of whom have been caring for more than ten years.
Such evidence allows us to conclude that home care can last for days, months, years or even decades, because despite the technological advances in cancer treatment, the direct and permanent presence of the caregiver will be necessary as long as the person's inability requires it (5) . On the other hand, the technological advance for the treatment of cancer can lead to sequelae or complications that require continuous care and follow-up.
The assumption of the role of family caregiver and the permanence in this function for a long period are presented in the present study as a tendency for caregivers, since once a caregiver, possibly always a caregiver (17) . This assumption may be related to the fact that the majority of the caregivers covered by this study had previous experiences of care in the family nucleus or with sick friends. The fact of having cared for someone in the past is a characteristic of the caregiver described in the literature (17) .
Regarding the evaluation of the caregiver's ability to take care of the family members of this study, it was evidenced that most of them obtained score compatible with the medium level of ability, in the overall CAI-BR, as well as in their dimensions, namely knowledge, courage and patience. These results partially diverge from those described in international studies, which showed that most caregivers presented a high level of ability in the overall score, as well as in the knowledge and patience dimensions. In the courage dimension, the result is similar to that of this study, since most of the caregivers presented medium level of ability (5,21) . The identified

Conclusions
The results of the present study confirmed Moreover, the association between time of care and the patience dimension, as observed in this research, brings light to the approach to those who take the care demands and can be an important tool when planning health education actions provided to these people.
Thus, the nurse, as an educator par excellence, has the potential to manage, plan and carry out joint practices with family caregivers, valuing them as partners in the process of caring for the patient on cancer treatment.