INTRODUCTION
The World Health Organization (WHO) estimates that by the year 2030, there will be 27 million cases of cancer, with 17 million deaths, and 75 million people annually living with cancer.1 In Brazil, the Brazilian Cancer Institute (INCA) estimated approximately 600 thousand new cases of cancer for the biennium 2016-2017.2
In 2005, the Brazilian Ministry of Health (MH) created the Brazilian National Policy on Oncology Care (PNAO, as per its acronym in Portuguese), which determined that cancer patients should receive care that includes the different levels of care, i.e., medium- and high-complexity, primary and specialized care, with actions focused on the individual and the community, on health promotion and cancer prevention, as well as on timely diagnosis and support for tumor therapy and palliative care.3
Basic care (AB), a structuring scenario for the development of several actions in the control of neoplasms, is the user's gateway into health services, being characterized as a local privileged place for promotion and prevention actions.4 The Family Health Strategy (FHS) should work focusing on family care, the development of bonds, care longitudinality and comprehensiveness, and on the action of population health determinants.5
The work performed by FHS nurses involves monitoring the population's health conditions as the essence of nursing care, either individually or collectively, monitoring health problems, and intervening in pathological issues.6
Nurses who are members of a FHS team have a position of relevance because they play a proactive role in their activities and stand out as the most prepared and available professionals to support and guide patients and their families in the process of illness, treatment and rehabilitation.7
Health professionals, especially nursing professionals, should include, in their daily activities, home care for cancer patients and their families, and work to support these families, to establish bonds, to identify the patients' distressing thoughts of having their wishes met, to be reconciled with him/herself and with others, as well as to support families in the process of death, in a caring and humane manner.8
It is worth mentioning that the nurse's role in hospital oncology care is widely discussed, but the literature has not highlighted actions of promotion and prevention, extra-hospital care, and/or palliative care present in basic care.
In view of this issue, the present study aimed to know the work of FHS nurses in oncology care, because the care given to these patients and relatives is challenging, due to their illness singularities and the different types of cancer that the professional identifies in the workplace.
METHODS
This is a descriptive, cross-sectional study, using a quantitative approach, developed at family health units in the city of Campo Grande, capital of the state of Mato Grosso do Sul.
The population was made up of 99 nurses who worked in the 39 basic family health units, three of them rural units. Teams that did not have nurses were excluded. Thus, the researchers excluded nine teams that, at the time of data collection, did not have a nursing professional; nine nurses who were on vacation or on medical leave; and four who did not accept to participate. At the end of selection, the sample comprised 77 nurses from 37 units, who were invited to participate in the study and who, after accepting it, signed a free and informed consent form.
Primary data collection took place from October to December 2015 in the health units and according to the nurses' availability.
Data were collected using a form containing 25 closed-ended questions, which addressed the following variables: nurses' sociodemographic and professional characterization: gender, age group, employment relationship, length of service in the FHS, and in the assigned area, type of employment relationship, specializations and skills carried out regarding oncology care; regarding oncology care: cancer patients in their area, and activities with patients and their families, comprehension of the PNAO, facilitating and hindering factors in assisting patients, and skills mentioned as necessary by professionals. The form was validated after a pre-test applied to 10 health professionals, namely a nurse with specialization in oncology, one with experience in oncology patient care, and eight who had already worked in the Family Health Strategy.
Interviews took place at a time previously scheduled by the nurses, individually, performed by the researcher, with average length of 45 minutes.
A descriptive analysis of the data organized in Microsoft Office Excel® spreadsheet was performed, with the questions being grouped according to similar answers, and presented in tables.
The study was approved by the Research Ethics Committee of the Federal University of Mato Grosso do Sul, under report no. 1.249.953.
RESULTS
In the analysis of the sociodemographic and professional characteristics of the FHS nurses, the study found a predominance of women (91%), in the age group of 31 to 40 years (54%), with a permanent employment contract (77%), and time spent in the FHS and in the assigned area of 24 to 72 months, corresponding to 40% and 46%, respectively.
Regarding specialization, 77% stated that they had one and, among these, 58% of specializations related to the area of public health or family health. More than half (65%) said that they did not have specific oncology health training.
As it can be identified in Table 1, most nurses had oncology patients in their assigned areas, and followed them up mostly through home visits and nursing appointments.
Table 1 Profile of care and activities developed by primary health care nurses in oncology care in the city of Campo Grande, state of Mato Grosso do Sul.
Variables | n | N | % |
---|---|---|---|
Cancer patients in the assigned area | 77 | ||
Yes | 60 | 78 | |
No | 17 | 22 | |
Cancer patient care/follow-up | 60 | ||
Yes | 57 | 95 | |
No | 3 | 5 | |
Activities performed with cancer patients(1) | 57 | ||
Home visit | 52 | 91 | |
Nursing appointment | 31 | 54 | |
Technical procedures | 29 | 51 | |
Discussion in the team meeting | 24 | 42 | |
Assistance to cancer patients’ family members | 60 | ||
Yes | 32 | 53 | |
No | 28 | 47 | |
Activities performed with cancer patients’ family members(1) | 32 | ||
Guidance about care for cancer patients | 19 | 59 | |
Guidelines about the caregiver’s health | 18 | 56 | |
Psychological support | 11 | 34 | |
Cancer patients’ rights | 1 | 3 | |
Others | 3 | 9 | |
Has knowledge on palliative care | 77 | ||
Yes | 66 | 86 | |
No | 11 | 14 | |
Performs palliative care | 66 | ||
Yes | 31 | 47 | |
No | 35 | 53 | |
Palliative care performed(1) | 31 | ||
General guidance on care regarding food, hygiene, comfort, ulcer prevention, and alcohol and smoking avoidance | 28 | 90 | |
Pain reduction | 12 | 39 | |
Medical care and control of tests | 2 | 6 | |
Does not perform palliative care(1) | 35 | ||
There is no need | 20 | 57 | |
Does not have cancer patients | 10 | 29 | |
Not prepared to care for this kind of patient | 5 | 14 | |
There is no demand by the patient | 3 | 9 | |
There is no demand by the team | 2 | 6 | |
Work overload | 1 | 3 | |
Offers guidance regarding chemotherapy and radiotherapy | 77 | ||
Yes | 30 | 39 | |
No | 47 | 61 | |
Guidelines about chemotherapy and radiotherapy(1) | 30 | ||
Nutrition care | 26 | 87 | |
Side effects | 16 | 53 | |
Skin care | 13 | 43 | |
Treatment frequency | 10 | 33 | |
Fluid intake | 3 | 10 | |
Care with physical effort | 2 | 7 | |
Hygiene care | 1 | 3 | |
Vaccines | 1 | 3 |
(1)More than one alternative could be chosen.
Most respondents reported having knowledge about palliative care, but more than half said they did not employ it because they considered it unnecessary. Regarding chemotherapy and radiotherapy, there was a prevalence in the non-implementation of guidelines oriented to the topic and, when these occurred, it was mainly directed to education about food intake.
Table 2 shows that most nurses were unaware of the PNAO, and that few had a good understanding of oncology care. Regarding the difficulties in assisting oncology patients, less than half reported having them, with the lack of training in oncology being the predominant reason. As for the facilitating factors, among those who reported recognizing them, the guidelines with no emotional appeal were the most reported.
Table 2 Knowledge, and facilitating and hindering aspects for primary health care nurses working in oncology care, in the city of Campo Grande, state of Mato Grosso do Sul.
Variables | n | N | % |
---|---|---|---|
Knows PNAO | 77 | ||
Yes | 3 | 4 | |
No | 74 | 96 | |
Knowledge about oncology care | 77 | ||
Cancer patient care | 53 | 69 | |
Cancer prevention and diagnosis | 25 | 32 | |
Care actions including promotion, prevention, diagnosis, treatment, rehabilitation, and palliative care | 10 | 13 | |
Guidelines regarding the disease | 9 | 12 | |
Collection of preventive tests, and monitoring of those that show alterations | 2 | 3 | |
Facilitating and hindering factors in oncology patient care | 77 | ||
Hindering | 35 | 45 | |
Facilitating | 23 | 30 | |
Did not answer | 19 | 25 | |
Hindering aspects(1) | 35 | ||
Lack of knowledge on oncology | 23 | 66 | |
Lack of knowledge on the disease and treatment | 16 | 46 | |
Work overload | 12 | 34 | |
Lack of materials and resources | 7 | 20 | |
Patient and family members do not accept the disease | 5 | 14 | |
Facilitating aspects(1) | 23 | ||
Guidelines with no emotional appeal | 21 | 91 | |
Performance of technical procedures | 4 | 17 | |
Professional experience | 2 | 9 | |
Need for courses/trainings | 77 | ||
Yes | 74 | 96 | |
No | 3 | 4 | |
Oncology care themes(1) | 74 | ||
PNAO | 57 | 77 | |
Palliative care | 55 | 74 | |
Care for family members | 50 | 68 | |
Treatments | 43 | 58 | |
Promotion, prevention | 39 | 53 | |
Others | 3 | 4 |
(1)More than one alternative could be chosen.
Regarding courses and training, almost all nurses stated that they had an interest in acquiring new knowledge, mainly on PNAO and palliative care.
DISCUSSION
In this study, there was a predominance of female nurses, similar to the findings of another research that showed the participation of women in a higher proportion in nursing, since this job is associated with female work.9 Age ranged from 24 to 62 years, with a predominance of the age group from 31 to 40 years old, differently from that found in a study carried out in a city in the south of Brazil, which identified younger professionals.6
Stable employment relationships are a favorable condition that allows the consolidation of primary health care guidelines,10 which can be considered as a positive result for this study, since most nurses have permanent employment contracts. Length of work in the FHS and in the same assigned area ranged from 2 to 6 years; in other studies, the mean time in the same area was 3 years.6,10
Most nurses had a specialization, and more than half related to public health and/or family health; these results were similar to those found in another research where only 62.5% of the professionals were trained in these areas.10
The lack of professionals trained in oncology care may indicate weaknesses in the development of their activities, since 65% of nurses do not have it. This fact evidences a need for interventions, since the PNAO recommends the qualification of health professionals at all levels of care.3
The reality of patients undergoing oncology treatment is increasingly frequent in the community; thus, nursing care requires from the health professional, in addition to technical-scientific knowledge, affectivity, communication, sincerity and empathy, which are constructive elements of care.11 Nurses should be prepared to provide quality care, because most of them have declared the presence of cancer patients in their areas, and that they follow them up.
Among the activities developed for oncology patients, this study identified home visits and nursing appointments as the most frequent, which were also found in an observational study carried out in 27 family health units, distributed in 10 Brazilian states.12
Home visits are strengthened as a strategy of care, disease prevention and health promotion, and proved to be care tools for users conditioned to chronic diseases.13 In the present study, almost all professionals reported performing them, providing the oncology patients and their family members an evaluation with the nurse's special attention. On the other hand, a study conducted in the city of Assis, state of São Paulo, found lower percentages (78%) in their execution, and 22% said they did not perform home visits.14
Nursing appointments are an important instrument that brings individuals and families closer to nurses, so all professionals are expected to perform them, although it was the second activity most cited in this study. It contributes to reduce rates of depression, fatigue, sleep disorders, stress, and pain level, ensuring patient's quality of life and well-being.15
In addition to performing follow-up activities for the patients, the FHS team should provide assistance to the patients' families. Another study showed that caregivers and relatives of people with terminal illnesses need physical, practical and psychosocial support to face the demands of home care; however, there is reluctance on the part of caregivers and family members to express their own needs.11
In this research, more than half of the professionals assisted oncology patients' family members, providing them with guidance on both patient care, and care for their own health, contradicting a study carried out in the city of Botucatu, state of São Paulo, which did not identify any direct care from FHS professionals to patients' caregivers or relatives in palliative care, although it is their role.16 Care is focused on the person with cancer, and the needs of caregivers or family members are often neglected by health professionals.11 A study carried out in Scotland proposes that primary health care teams be proactive and seek, within their localities, caregivers, as they tend not to identify themselves, and do not ask for help.17
The development of a suitable system for palliative care involves the contribution of the interested parts of each nation state together with world support. UK, Belgium and Canada already have excellent pediatric palliative care systems in place. Patients rely on their caregivers to provide adequate guidance, meet their needs, and provide the necessary support until their death.18 Palliative care is also part of nurses' care, who should be disseminators of palliative care, even if in a careful and progressive way; this assistance can be developed in different contexts, including the home environment.8 Most home palliative care in Ontario/Canada is provided by the public health system that identifies patients in need of such care, coordinates actions, and hires personnel for the provision of services, primarily nursing care.19
Despite being a topic that has been discussed since the 1960s,20 FHS nurses said they did not know what palliative care is, which is disturbing due to the existing fragility of oncology patients and their relatives. This becomes even more serious when the majority of those surveyed stated that they did not provide it, with the main justification that it is not necessary. However, care should start at the time of diagnosis.18 Studies show that FHS professionals feel unprepared to perform this kind of home care for patients and families.16
Most of the treatment of cancer is characterized as a traumatic process for patients and their families, due to various physiological, physical and psychological changes.21 FHS nurses should be aware of these changes and, therefore, give guidelines that contribute to their patients' quality of life improvement.
Among the main side effects of chemotherapy and radiotherapy treatments are nausea and vomiting, neutropenia, mucositis, xerostomy, skin lesions, fatigue and anxiety.22-24 Therefore, it is worrying that only a little more than half of the nurses provide guidelines for better adaptation to treatment.
Providing support, delivering service, and improving the quality of life of oncology patients are priorities in the UK guidelines.25 The PNAO establishes guidelines for cancer control in Brazil, from health promotion to palliative care, strengthening strategies of control, and qualifying cancer care.3
However, in this study, it is worth mentioning that almost all nurses were unaware of PNAO guidelines, and a minority correctly understood the proposals for oncology care, which may have a negative impact on the quality of care provided to oncology patients.
Among the main difficulties encountered in assisting cancer patients was the lack of training in oncology, also cited in a study carried out in Brazil and Portugal,26 in which nursing professionals declared lack of training as a reason for dissatisfaction. A study conducted with Zambian nurses also revealed that the lack of oncology training contributes to negative experiences and prevents the provision of optimal nursing care, a concern that exists in developed and developing countries,27 evidencing, again, the need for training primary healthcare professionals for assisting oncology patients.3
Regarding facilitating aspects reported by the nurses, care with no emotional appeal for cancer patients predominated, a fact that is not reported by other researchers who revealed that cancer is the disease that leads professionals to most suffering.21 Another study carried out in the Isfahan Province, in Iran, with oncology nurses, highlighted the need for intervention programs to relieve stress and prevent these professionals from being fatigued, as they play an important role in the care of cancer patients.28 Psychological and emotional disturbances are expected, due to the highly demanding technical care provided, which can lead to a commotion to be experienced by these workers in their routine.29
A study conducted in the UK with oncology nurses and community nurses assessed their self-reported skills and demonstrated that community nurses were less confident in recognizing the late symptoms of the disease, and identified a greater need for training, as their role is continuous in monitoring patients with cancer.30 Continuing education has been an important instrument for the construction of professional competence, contributing to work organization.31
Thus, most nurses proposed, for the improvement of the assistance to cancer patients, training aimed at the PNAO, which is of great relevance, as it aims at the qualification, specialization and permanent education of health professionals, who have a critical role in cancer control.3
CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
The care provided by nurses is performed in different ways, in the direct care to both patients and to their families, which shows, mainly, that the professionals inserted in the FHS teams are unprepared to assist patients with cancer in their assigned areas.
Faced with such unpreparedness, the care offered by the primary health care network of the municipality becomes fragile, causing a negative impact on care delivery and on the quality of life of these patients and their families.
Nurses' lack of knowledge about the PNAO is a challenge for managers, because it guides the care of users with cancer, and its wide dissemination within FHS teams is necessary. Investment in these professionals is essential, due to the explicit need for permanent education to qualify them and to ensure an efficient and modifying care to oncology patients and their families.