RESEARCH ARTICLES
Therapeutic itinerary in breast cancer: a contribution to the nursing care
Luciana Martins da RosaI; Vera RadünzII
INurse. Professor from the Nursing Department at the Federal University of Santa Catarina. Member of the Research Group Caring & Conforting from the Post-Graduate Nursing Program at the Federal University of Santa Catarina. Florianópolis, Santa Catarina, Brazil. E-mail: luciana.m.rosa@ufsc.br
IINurse. Professor from the Department and the Post-Graduate Nursing Program at the Federal University of Santa Catarina. Member of the Research Group Caring & Conforting from the Post-Graduate Nursing Program at the Federal University of Santa Catarina, Santa Catarina, Brazil. E-mail: radunz@ccs.ufsc.br
ABSTRACT
It is a qualitative that which aimed at knowing the therapeutic itinerary adopted by women with breast cancer. Data collection, from August to December 2010, was conducted with 13 women exclusively served by the public health system in an oncological institution of the Santa Catarina State. We have used the semi-structured interview technique, followed by content analysis. The Health Care System was the adopted theoretical benchmark. The reports were grouped in the thematic category therapeutic itinerary and in the following subcategories: care of the body, care of the spirit, care of the mind. The care procedures that compose these subcategories represent a significant care for the woman with breast cancer and should be included in the nursing care planning, as well as in the planning of other professional categories.
Keywords: Attitude towards the health; nursing; breast neoplasms; medical oncology.
INTRODUCTION
Chronic diseases cause changes in people's lives. Thus, it emerges the need for new habits, roles, as well as the incorporation of the disease in the living process. Given the prognosis of the illness, people need to believe that something more might be done and, consequently, seek several treatment options, involving the professional knowledge and other skills, such as their own, the expertise of people closer them and of other healing agents, forming a network of relationships that interfere, consolidates and transforms the beliefs and values of individuals in determining the health care procedures1-3.
The role of health care professionals, often, does not consider the fundamental question of personal freedom of people. Nonetheless, when there is approximation towards the cared people, one tries to understand the way in which they treat and care of their health problems. Hence, it should be realized that the prescription from the health professional is not the only suitable pathway to the treatment and health care, but is understood as one more option4.
Considering the importance of knowing the therapeutic itinerary, this study aimed at evaluating the therapeutic route adopted by women with breast cancer, in the time interval from the disease symptoms until the adjuvant treatment.
This study is justified by the high incidence of women with breast cancer and by the need of the health care staff to identify the care to be adopted by them, in order to better plan the health and nursing actions.
THEORETICAL BENCHMARK
The theoretical framework that has supported the development of the study, as well as the data analysis, was the Health Care System, proposed by Arthur Kleinman. This system consists of three subsystems: the family, the professional and the popular. The family subsystem basically determines the health care chosen by the person. The professional subsystem comprises the official network of health care. The popular subsystem is formed by not legally recognized professionals who provide care through plants, manipulative treatments, healing rituals, among others5.
METHODOLOGY
It is a qualitative study held in an oncology institution of the Santa Catarina State, Brazil. Approved by the Ethics Research Committee (Opinion 009/2010) of the study scenario and developed in accordance with the legal requirements6.
We have included in the study: women performing adjuvant chemotherapy treatment, exclusively served by the Unified Health System (SUS) and that started the treatment with the following therapeutic sequences: neo-adjuvant chemotherapy, followed by surgery and chemotherapy and/or adjuvant radiotherapy, or surgery, followed by chemotherapy and/or adjuvant radiotherapy. We have also included women who started the disease treatment in the year 2009, with the aforementioned therapeutic sequences, with exclusive care through the SUS, as the registrations in the medical charts, encountered with scheduling of post-adjuvancy follow-up, during the study period.
The selection of women in adjuvant chemotherapy was conducted with basis on the scheduling system of chemotherapies. 36 women were approached in Chemotherapy Center and, among them, eight met the inclusion criteria. The exclusions, 28, took place due to the diagnostic and/or therapeutic steps have been conducted by means of private financial resources or by health insurance projects.
The selection of women who started the treatment in the year 2009 was conducted by list of names provided by the computer science department. After analyzing the medical charts, 24 registered exclusive scare by the SUS. Of these 24 initially selected women, five women were found during the study period, with scheduling of attendance in the study scenario. Thus, the total sample was composed by 13 females.
Data collection, from August to December 2010, was conducted through semi-structured interviews, which were scheduled according to the availability of each woman.
The question that guided the development of the interview was: What are the health care procedures that you adopted, in your everyday life, from the beginning of the disease suspicion?
The interviews were recorded, transcribed and validated. The data validation with the subjects was planned to assign accuracy to the analyzed results, respecting the obtained discourses.
To assure anonymity, each woman chose a pseudonym to represent her.
From the transcripts, we have performed the content analysis proposed by Bardin.
RESULTS AND DISCUSSION
From the reports, we have selected communications excerpts that could express the adopted care towards the health and reflect the covered therapeutic itinerary. Thus, it has emerged the thematic category: therapeutic itinerary, consisted of the following subcategories:
Care of the body
It has covered care of: arm, nutrition and hydration, rest, sun and skin, physical activity, use of phytotherapic agent and self-medication, medical monitoring, prescribed examinations and treatments.
The care adopted towards the arm underwent axillary lymphadenectomy were reported in the form of: decreased body weight lifted by the operated arm; care of the operated arm, avoiding the risk of skin lesions or others; care not to put the body weight on the operated arm; care of the hand nails; physiotherapy guiding the care of the operated arm and helping to reduce the lymphedema.
I did physiotherapy [....] I take care of my arm, I don’t lift weight, don’t do house cleaning, my children are the ones who do it. (Maria)
The care of the arm underwent axillary lymphadenectomy was the action cited by all women. At a first glance, this result suggests a health practice suitable to the needs of women with breast cancer subjected to the surgical procedure. However, the speeches showed that the guidelines are provided in the surgical or post-surgical period or still during chemotherapic treatment or, even, are not provided by professionals, but by other women or searched on the internet.
The women also emphasized the difficulty for scheduling consultations with physiotherapists, both in the institution participating of this study and in the health stations. Difficulties to access to this type of service delay the recovery of arm movements, limiting the proper performance of daily activities.
Regarding the nursing guidelines, respondents only mentioned the guidelines referring to the care to avoid the accomplishment of venipuncture and blood pressure check in the operated arm.
An important point to be discussed is related to the lack of clarifications with regard to the surgical procedure and the physical consequences. It is understood that teaching requires clarifying the whys, because, without that, the learning process is incomplete, and might generate a careless or a senseless or unrealistic care. Being that the care of the arm underwent axillary lymphadenectomy is crucial for the operated woman, and indispensable for the organization of the health system, guiding and supervising her in relation to the care, from the pre-operative stage until its adoption, as daily shares for the woman. This care should involve, at least, the nursing professionals, physicians and physiotherapists.
The care of the arm was influenced by the professional subsystem, since it has started from, even though in some cases in a deficient manner, the guidelines of health professionals. But, in everyday life, it has emerged the family subsystem, performing, evaluating and selecting the care. This demonstrates not only the influence of the professional subsystem, based on scientific knowledge, but also the strong influence of the family subsystem, defining the care to be adopted as daily practice of care. This is an overlap indicated and justified by the Health Care System5.
The adopted care with feeding and hydration were reported as: reducing the amount of food; inclusion of healthier foods in the daily diet, highlighting the consumption of fruits and vegetables; reducing less healthy foods (foods that make up the apex the food pyramid); adequacy of mealtimes; eliminating the consumption of fried foods, alcoholic drinks, red meats and canned; increased consumption of fishes; inclusion of brazil-nut, molasses, integral grape juice and spinach juice with orange in the diet, as well as increased fluid intake.
I'm eating more healthy things and I'm watching my schedulings, because I was eating at the wrong time, eating snacks and now [...]. (Mari)
This care was the second most cited. This finding is similar to that found in research conducted with people diagnosed with cancer receiving outpatient chemotherapic treatment, when it was evidenced the appreciation of feeding act, aiding the balance of the body and the cure of the disease3,9.
Having a cancer diagnosis leads the individual to reflect on its own life, to seek the knowledge acquired throughout the history of life, associating them with the new information received in the search for the maintenance of life with higher quality.
Reflecting on the feeding act and transforming it is the demonstration of responsibility for what one decides to eat, assuming itself decisions without being able to blame others. This process involves the interrelation, again overlapped, between the professional and family subsystems, being that this is the complementation of the adopted care5,9.
The rest was affirmed by stopping or reducing the professional exercise and the previously performed domestic activities.
I had to stop to working; I needed to take care of myself, complete rest, [...] (Nete)
It allows for a partial or complete inactivity of the body and the mind and, associated with sleep, assists in reducing anxiety, concerns and suffering. 11 It assists in the restoration of physical and mental strengths and helps to control the disease, since reducing the loss of energy expended to perform numerous routine activities could compete with the forces of the own body for keeping its balance during the treatment period. On the other hand, the prescribed therapies for the treatment of breast cancer drive the body to a loss of energy, whether physical, psychological, emotional and spiritual, by deregulating the homeostasis itself. Thus, the beliefs of the family subsystem guide the woman to hold the rest and this choice is also reinforced by guidelines of the professional subsystem.
The sun and skin-related concerns involved the care with: sun exposure in times prior to 10 A.M. and after 4 P.M.; the search for shade and/or use of sun umbrella; the use of sunscreen, cap and moisturizer.
Ah, I did not catch the sun after all, anciently, we got that little mark, that little color [...] Now, I go to the beach at the right time, take my bath in the sea and go to under a little shade, stand there, use plenty of sunscreen, cap, I take care of myself as much as I can. (Neni)
This care measures have involved overlapping family and professional subsystem.
People normally have knowledge of what precautions should be taken to avoid an inappropriate exposure to the sunlight. Although they have the knowledge, they do not practice it. When faced with a chronic and/or fatal disease, however, the reflection on the living and the consequences of this living are raised and, with that, it emerges the need to rescue and use the knowledge to live better. Added to this, there is still the burden of care recommendations required to be followed during the chemotherapic treatment period, dialogued with nurses, physicians and other professionals.
Studies on the health care system argue that the symbolic principles influence in the psychological and decision-making processes, but we still do not know the way in which the symbolic reality exerts its effects over the psychological reality. Evidence suggests how it works, but what actually happens is a mistery5.
Physical activity was affirmed by the practice of walking and doing yoga, as a personal choice.
I Walk, I always walked. I Walk every day, from my house until the beach, outward and return reach 1,25 hours. (Teixeira)
Physical activity helps to maintain the balance between caloric intake and energy expenditure, avoiding the accumulation of calories that could lead to weight gain and obesity, thus reducing the risk of cancer. This caution should be observed and stimulated, especially during the menopause period12,13, leaving it to the professionals to conduct clarifications and guidelines necessary for the woman to understand the importance of adopting the regular practice of physical activity. This guidance was not found in the speeches of women referred or complemented by professionals, which indicates that the professional subsystem needs to review its guidelines.
The use of phytoterapic agents and self-medication was defined through the consumption of Aloe Vera, teas and muscle relaxant.
[...] At night, to sleep, take some tea [....] Chamomile, Lemon balm, Fennel. [....] Always took enough tea, family habit [...]. (Bárbara)
In addition to the therapies prescribed by health care professionals, it is common having the search for other care strategies before the confrontation of diseases. This search aims at complementing the health care needs and, in general, is directed to the cultural beliefs, being directly influenced by choices of family subsystem. The use of herbs, in its origin, interrelates the family and popular subsystems, but, in this study, it has emerged under the influence of the family subsystem. The self-medication was used as an alternative for the muscle relaxation, thereby reducing tensions.
Studies show that experience with cancer leads people to the use of non-conventional therapies in the quest of achieving emotional balance and having them as auxiliaries for the health control14.
The medical monitoring, examinations and treatments prescribed have involved the surgical, chemotherapic, radiotherapic and hormonotherapic treatments, examinations accomplishment, physiotherapy, use of prescribed drugs and medical follow-up.
I hold the accompaniments along with doctors, from this institution, radiotherapy, from the hospital and with the mastologist. (Maria)
The strong social representation of cancer linked to death, pain and suffering, as well as the social evidence that the cancer is a difficult disease to treat and control, leads the woman with breast cancer to recognize the professional subsystem as the guiding for determining the care to be adopted. The failure to achieve the prescribed care by professionals that compose the professional subsystem would represent for the woman a careless with her own body and with the maintenance of life.
Thus, we observe the influence of scientific knowledge of the social network of health care for women with breast cancer and the interrelationship between the woman and the professional subsystem, modifying the perception and response to the social world, affecting the way of thinking and responding to the disease, as well as in choosing the health care practices5.
Care of the spirit
It has covered the manifestation of faith, belief in God and in the designs of life, performed daily prayers, readings on spiritualist topics and on the Bible, participation in activities conducted in spiritualist homes and by pr aying the rosary.
[...] I have great faith in God, I have God in my heart; He held my hand, when I was doing chemotherapy [...] (Neni)
The search for God, through faith, spirituality and/or religion is a way of understanding the disease, accept it, and seek forces for the lived fighting. Understanding the onset of cancer requires much effort and reorganization of thinking, i.e., the way of seeing life.
The experience of cancer brings up a sense of emptiness and a feeling of loneliness, experience that leads a person to seek resources to mitigate the sufferings. One of these resources involves religious and spiritual beliefs, which socially represent an external appeal, when the internal ones are scarce. Faith acquires the function of establishing a covenant with life and of being an ally against cancer15.
In this context, there is the influence of the popular subsystem over the family subsystem, because of proximity of cultural values and due to its availability of giving explanations about the disease in a more accessible way to the understanding of the woman5.
Care of the mind
It has also covered the care with: self-awareness and reflection, appearance, search for information, participation in support group of therapeutic help and of elderly.
Self-knowledge and reflection were constituted in the speeches of women who revealed that, after the appearance of breast cancer, their lives started to have a new value. Thus, by changing the way of thinking and acting in life, there was reduction of stress, of hustle of the life prior to the diagnosis of cancer, as well as the development of a positive thinking in the face of the lived confrontations.
But, the disease has served to teach me how to give value for things, for life, helped me enough for me to appreciate myself. (Mari)
The way in which one perceives the disease, how one responds to it, the life experience of the person and the cancer treatment make up the therapeutic itinerary, i.e., the Health Care System5. The perceptions, interpretations and actions for dealing with health are culturally constructed and in the individuality of every human being. The self-knowledge, before a chronic and degenerative disease, such as cancer, arises in the flow of lived confrontations, which leads the subject to reflect on its own life.
Nevertheless, this reflective act is included in a meeting with itself, which dangles in several psychological phases of the coexistence with cancer. This process of training the thinking and the feeling transforms the human being, given that the self-knowledge emerges as an effect of this training, fostering the health, by contributing to the balance of the human being: the woman with breast cancer.
Some people consider the diagnosis of cancer like a watershed, what they were before and how they remained after the disease3. Therefore, the transformation begins from the process of self-knowledge.
The care with the appearance has included the use of wigs, scarves, beauty products, nails treatment and the use of silicone prosthesis at the bra, as well as the search for the possibility of breast reconstruction.
I take my shower, I put my cream, I use a prosthesis at the bra [...] I do my makeup [....] I put my handkerchief [...] (Teixeira)
The woman with breast cancer deals with the disease itself, with the treatment and possible physical and psychological sequels. At the same time, she confronts herself with cultural aspects related to the construction of the female identity, a pretty special social significance and symbolism. Understanding this woman in this web of meanings is important, because this comprehension drives the adoption of a treatment targeted to a frail woman in her sexuality, motherhood and femininity. On the other hand, the active role of the woman should be encouraged and realized as an agent of the healing itself.
The search for information was composed by the testimonies of women who reported to search for information about feeding, on the internet, and about breast cancer, with other women diagnosed with the same illness.
Not everything was informed by the physician, and I searched for many things on the internet, and also talked to other people [...] (Bárbara)
The curiosity and the search for information are inherent in human nature. The attitude of women has represented the need to better understand the experienced situation and find new alternatives to take care of themselves. Accordingly, they were not limited to a single subsystem, but rather going through all the subsystems that might bring answers to their questions.
By speaking specifically about the knowledge disseminated on the Internet, the content available and the difficulty of assessing the quality of information, due to lack of a mechanism for holding quality control, this is an important aspect to be considered17, since the easy access might be a contributor or not to the women's health. However, the main concern is that the information should be verified by professionals, since it is known that some obtained information might be totally wrong, consequently, instead of assisting women in their therapeutic itinerary, they might be harmful.
The participation in support groups of therapeutic help and of elderly was mentioned because of the importance of coexisting with people living in conditions similar to yours, possibility of making new friendships, opportunity to dance, perform physical activities, recreational activities and walking. They also showed the importance of support groups of therapeutic help, due to the opportunity to learn and exchange new information, remaining around women who experienced the same difficulties, distractions, diversions, relaxations, besides thinking in their lives, and not only about the others.
[...] In the clubs of the elderly, you can to make friendships with other people, dance or do this or do that, performs activity. That’s very good. (Cristina)
The demand for elderly groups and of therapeutic support configures the quest for the professional subsystem, by basing the dialogues, the experiences and the activities of the groups at stake. On the other hand, it also enables the exchange of experiences and beliefs of the participants and of the several family subsystems.
In the supportive groups, women recognize that might, along with the others, face obstacles and overcome limits, also realizing that they are not alone, that might share experiences and, therefore, rediscover the will to live and change the psychophysics and psycho-social realities18.
CONCLUSION
The knowledge of the therapeutic itinerary of women with breast cancer is configured in a guiding skill for planning nursing care and health care actions. Gathering the women and professionals' skills, and vice versa, enables the adoption of more effective care strategies. The unveiled data collaborate with this purpose.
This study has identified that the adoption of a therapeutic itinerary directed to the reality of breast cancer is hindered by the limitation of professional information. It is noteworthy that the precariousness of the information provided to the woman who underwent axillary lymphadenectomy requires the reorganization of the health care system, in order to minimize the consequences of the therapeutic treatment.
It should be recommended the creation of spaces for the dialogue of the femininity, which helps these women in facing the changes caused by the therapies and by the diagnosis of cancer itself, as well as in defining health care that should be adopted in the every life. Furthermore, it should be recommended to the nursing service, from this study scenario, to hold a review of the development of the nursing care, since the reports demonstrate the lack of guidance on this issue to women, in addition to the difficulties that they have experienced. The performance of nursing in oncology cannot renounce the care of women with breast cancer, as these customers need such a care.
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Received: 07.10.2012
Approved: 15.01.2013