Existential phenomenological view of health care experiences from the perspective of cancer survivors

Vista fenomenológica existencial de las experiencias de atención médica en la perspectiva de los supervivientes del cáncer

ABSTRACT

Objectives:

to understand the experience of post-discharge health care of primary cancer treatment from the perspective of survivors.

Methods:

a descriptive study with a qualitative approach, using Martin Heidegger’s Existential Phenomenology framework. Analysis of semi-structured interviews of 11 cancer survivors, after primary treatment, was carried out through vague and median and hermeneutic understanding.

Results:

three units of meaning emerged in the search for the unveiling of the phenomenon: Respecting physical limitations after cancer; Transcending themselves after illness; and Overcoming the ghost of fear.

Final Considerations:

cancer survivors experience care in intentional choices favorable to health, when they overcome their own limitations, fear of relapse or new cancer. The need to improve continuous professional monitoring in order to answer questions reinforce favorable attitudes and enhance the chances of better quality of life for cancer survivors.

Descriptors:
Survivors; Cancer; Health; Assistance; Oncology Nursing

RESUMEN

Objetivos:

comprender la experiencia de la atención médica después del alta del tratamiento primario contra el cáncer desde la perspectiva del sobreviviente.

Métodos:

estudio descriptivo, con enfoque cualitativo, utilizando el marco metodológico de la Fenomenología Existencial de Martin Heidegger. El análisis de las entrevistas semiestructuradas de 11 sobrevivientes de cáncer, después del tratamiento primario, se realizó a través de una comprensión vaga, mediana y hermenéutica.

Resultados:

surgieron tres unidades de significado en la búsqueda para revelar el fenómeno: Respetar las limitaciones físicas después del cáncer; Trascendirte después de la enfermedad; y Superar el fantasma del miedo.

Consideraciones finales:

el sobreviviente de cáncer experimenta atención en elecciones intencionales favorables para la salud, cuando supera sus propias limitaciones, miedo a la recurrencia o cáncer nuevo. Se enfatiza la necesidad de mejorar el monitoreo profesional continuo para responder preguntas, reforzar actitudes favorables y aumentar las posibilidades de una mejor calidad de vida para los sobrevivientes de cáncer.

Descriptores:
Sobrevivientes; Cáncer; Salud; Asistencia; Enfermería Oncológica

RESUMO

Objetivos:

compreender a vivência do cuidado à saúde pós-alta do tratamento oncológico primário na perspectiva do sobrevivente.

Métodos:

estudo descritivo, de abordagem qualitativa, utilizando-se o referencial metodológico da Fenomenologia Existencial de Martin Heidegger. Análise das entrevistas semiestruturadas de 11 sobreviventes ao câncer, após tratamento primário, foi realizada por meio da compreensão vaga e mediana e hermenêutica.

Resultados:

surgiram três unidades de significado na busca pelo desvelamento do fenômeno: Respeitando as limitações físicas após o câncer; Transcendendo a si próprio após a doença; e Superando o fantasma do medo.

Considerações Finais:

o sobrevivente ao câncer vivencia o cuidado nas escolhas intencionais favoráveis à saúde, quando supera suas próprias limitações, medo de recidiva ou novo câncer. Ressalta-se a necessidade de aprimorar o acompanhamento profissional contínuo no intuito de sanar dúvidas, reforçar atitudes favoráveis e potencializar as chances de melhor qualidade de vida dos sobreviventes ao câncer.

Descritores:
Sobreviventes; Câncer; Saúde; Assistência; Enfermagem Oncológica

INTRODUCTION

The number of people who survive cancer has increased, and some factors contribute to this, such as early screening of the disease, which favors diagnosis in its earliest stage, plus access to health services and adequate support after the discovery⁽¹⁾. Concerning this growing condition of the increased the number of survivors, North American estimates point to approximately 20.3 million people in the country by 2026⁽²⁾. Among Brazilian data, no specific information on survivors is presented, only annual estimates are available for new cancer cases⁽³⁾.

In Brazil, there is also no widespread definition regarding the term “cancer survivor”, and, consequently, this term is seldom used and explored in research⁽⁴⁾. An American study presents a definition according to patients’ clinical conditions. Therefore, survivors in the acute phase are under diagnosis of the disease or in recurrence, undergoing treatment. Chronic are those that evolve slowly and alternate between remission and relapse. In remission are those who have been without the disease for a long time, but may still present risks of recurrence or new cancer, or else experience the physical and emotional consequences related to the disease or treatment. Finally, the term “cured” is designated to those who no longer have the disease and are at risk of death and life expectancy equal to the general population⁽⁵⁾.

In addition to clinical definitions, being a cancer survivor involves subjective issues, as it is about human life that has undergone changes, adaptations, treatments and still lives with the complications of chronic disease and rearrangement of life. Thus, they face a mix of feelings, sometimes with joy at the end of treatment and, at other times, sometimes surrounded by the uncertainties and sequels that mark survival⁽⁶⁾. A study carried out in Cuba, with women who ended cancer treatment, reveals anxiety related to daily situations and of a relational order, such as sexuality, abandonment by their partner, concern to contribute to family income and care for children⁽⁷⁾.

Patients can live with the consequences of their own cancer treatment after years of termination⁽⁸⁾, requiring health professionals to take a broad and comprehensive look at health care for this population. Faced with this multifaceted reality of being a survivor, care with physical and emotional health, also involving lifestyle, must be continuous and permanent in patients’ lives. However, the factors of inadequate or insufficient information, difficulties in accessing health services, especially those that provide support after treatment, financial and even emotional barriers, such as the patients’ willingness to adhere to care strategies, interfere with this continuity⁽⁵⁾.

A recent study carried out in Brazil, with 100 cancer surviving women who finished primary treatment and are, in the majority (71%), undergoing endocrine therapy, points out that about 5% of these women are smokers and 6% are alcoholics⁽⁹⁾. Another study conducted with Chinese survivors shows one more worrying fact about life habits, in which only 12.8% of the interviewees reported performing physical activity at least three times a week⁽¹⁰⁾. The data reinforce that even after the end of primary treatment, the need for guidance and support remains.

Entering the world experienced by cancer survivors and knowing their health care realities is essential in order to guide quality care. Therefore, the study presents the concern: how does the cancer survivor experience self-care after the primary treatment phase? Therefore, for the purposes of study, those patients who have finished primary treatment and are being followed up will be adopted as cancer survivors. It is noteworthy that, despite the growth in the production of research involving the theme, there are few that explore the subjective aspects of a qualitative nature related to the patients’ perception of their health care.

OBJECTIVES

To understand the experience of post-discharge health care of primary cancer treatment from the perspective of survivors.

METHODS

Ethical aspects

This is an excerpt extracted from the thesis “Olhar Fenomenológico ao cuidado à saúde em sobreviventes ao câncer”, to be presented in the Graduate Program in Nursing at Universidade Estadual de Maringá. There was approval by the Research Ethics Committee of the referred University, under Opinion 3,229,447/2019. All ethical aspects of Resolution 466/2012 of the Brazilian National Health Council (Conselho Nacional de Saúde) were observed. To guarantee participant anonymity, all were given names of flowers, observing the characteristics captured by the researcher during all meetings and were related to the respective flowers, according to a basis contained in specialized book in the field⁽¹¹⁾.

Theoretical-methodological framework

We adopted the theoretical, methodological and philosophical framework of Martin Heidegger’s Existential Phenomenology. They enable search and understanding of the meaning of Being before the phenomena experienced in the context of caring, always starting from the ontic dimension (meanings) and moving towards the ontological dimension (meanings)⁽¹²⁾.

Type of study

This is a research developed on the principles of the Heideggerian phenomenological method, which also considered the criteria proposed for research with a qualitative approach in the COREQ guidelines⁽¹³⁾.

Methodological procedures

Study setting

The study setting was constituted in homes, where subjects experience most of health care, and also where they received care and continue to be supported by a family caregiver.

Data source

Eleven cancer survivors participated in the study, who were over 18 years old and who ended primary cancer treatment, receiving only endocrine therapy. The study did not include those patients who received a new diagnosis of cancer or recurrence of the disease.

Collection and organization of data

As a resource for data collection, an instrument created by researchers was used, composed of three parts: the first part contained sociodemographic characterization; the second contained disease and care characterization; and the third contained the guiding question of the study: “How do you take care of yourself after cancer treatment?”. All interviews took place at home in a quiet and private environment, without interruptions. They lasted, on average, 45 minutes to an hour, with participants’ permission to record them using a digital recorder. Observations were recorded, such as gestures, facial expressions and other pertinent information in a field diary.

The path taken until the participants’ meeting took place through a philanthropic institution in northwestern Paraná that provides care to patients and family members with cancer and also has socio-educational groups of patients who have already undergone cancer treatment. The institution’s social worker selected possible participants according to the mentioned criteria and made initial contact with them, referring them to the researcher in charge of the interviews. There was a telephone appointment for a first home visit, which favored the approach, creating a bond and presenting the study as part of the interviewer’s doctoral research. Those who consented to participate were visited in a second moment to conduct an in-depth private interview; except those who requested the interview on the same day due to personal commitments and work routine.

It is clarified that from the list of 16 survivors referred by the social worker, there was an attempt to contact everyone; however, it was not possible to locate two women, and three others, due to personal commitments, were unable to participate. Accordingly, data collection was carried out from March to May 2019, totaling 11 survivors interviewed.

Data analysis

Data analysis followed two moments based on Heideggerian framework⁽¹⁴⁾, consisting of comprehensive analysis through vague and average understanding, and the second, hermeneutic analysis. Thus, in the first moment of analysis, there was a vague and median understanding through attentive and exhaustive readings by both researchers, in order to understand how cancer survivors perceive their health care experiences. It was to meet the facts and what the conscience reveals, making it possible to find the meanings expressed in the statements, the ontic dimension of the phenomenon.

Through hermeneutic analysis, in the second moment, based on the meanings found, interpretation was carried out with new readings and analysis, directed to the essence of the phenomenon and the subjective. This allowed unveiling what was hidden, the senses, characterizing the ontological dimension of the phenomenon.

RESULTS

Among the 11 cancer surviving patients, breast cancer diagnosis prevailed (nine women); another woman had multiple myeloma; and the only male participant faced cancer in the oropharynx. Concerning return to work activities, only five perform any paid activity, and two perform such activities at home. In relation to labor, it can refer to the participants’ own age, which varies between 45 and 70 years old. Time to finish primary treatment and start endocrine therapy varies between one and nine years.

Following the methodological path, units of meaning were elaborated a posteriori that respond to the objective and assist in unveiling the phenomenon experienced by survivors: Respecting physical limitations after cancer; Transcending themselves after illness; and Overcoming the ghost of fear.

Respecting physical limitations after cancer

In the daily life of cancer survivors, health care is understood and performed through some actions that portray the need for changes and adjustments in this post-treatment stage. Among these, we highlight respect for the physical limits of the body that guide and restrict the daily actions to be performed or adapted.

Nowadays, since I have a problem with my arm, I had to give up doing a lot here at home, it was a difficult decision. So, I put it in my head that I can’t, I won’t do it and I have to accept. (Marigold)

[…] I can’t raise my arm for hanging clothes on the clotheshorse, so now my husband does the laundry. I do all chores but I used to do it every day […] so, it’s something that I don’t do every day as I used to. Then, I don’t sleep at night, because I have pain. I have to preserve myself from a lot. (Lily)

I don’t do as I did, because, in the past, I used to go to the farm and stay there all day under the sun. You can’t even do it, you can’t do it! You begin to feel that you are pushing, you begin to feel pain. [...] I worked all day [...] I cleaned the wall, cleaned glass, cleaned everything. Today I don’t do it anymore, my house is left out! (Gardenia)

If you get too much weight, you get hurt! If I have to take it, I take it from this side, from the right. This one [shows the left] was isolated. If I’m going to clean something, I do a little and sit down! I cannot stand! (Edelweiss)

I don’t clean my house so I don’t swell my arm. I don’t iron clothes, [...] my husband sweeps, he does everything! None of this I do, because if I do, it will harm me! I no longer have a curtain, a rug, because I can’t [clean]. (Hydrangea)

In order to preserve, in addition to the decrease in the intensity of activities that were previously performed naturally in domestic chores, now, even activities that provide pleasure and well-being, such as hobbies, are performed in a different routine. Such care is perceived by survivors as essential, in order not to compromise the arm affected by axillary emptying.

When I do a lot of exercise, like crochet, sewing, repetitive exercise, then you have to take a break. [...] it’s a hobby, a therapy, I think it’s good, but I don’t do it like before. I do it slowly, I take a break, I go outside, I go to watch a television, then I go back and do a little more. I no longer feel like I used to. (Cape Leadwort)

Faced with episodes of pain, edema and countless physical restrictions, when they choose attitudes that preserve the body and avoid these complications already experienced before, survivors also choose to assume an identity of struggle for life, transcending themselves.

Transcending themselves after illness

In the trajectory full of choices related to taking care of oneself, there are intentional changes related to food, involving a proper exercise of abstaining from habits that were part of life before cancer.

Now, I try to choose the darkest green, reddest vegetables. We will listen, obey, and eat. Food changed more, something we didn’t eat so much and now it defines food more. Three, four times a week eat the meat, and we eat salad every day. (Cape Leadwort)

Before, I really liked sweets, now I try to improve, if I eat sweets today, next week, I take care of myself! I eat less, like a smaller piece. Today, I try to take care of the food, I avoid fried foods! I control sugar, everything moderate [...]. (Marigold)

There are those survivors who stand out for achieving even more profound and intimate changes, as they refer to the way of thinking, seeing themselves and the world and reinventing themselves under the circumstances imposed to them. Moreover, they remain steady even in the presence of constant pain.

Now, after treatment, I started taking care of myself, before I didn’t take care of it, I only had time for my daughters, my husband and brothers. After I had the disease, I stopped to think that if I have died that year, I would have anything to tell. [...] then, I started looking at myself, doing what I liked! [...] because I didn’t say “no” to anyone, even though I didn’t like it, that it didn’t do me any good, I welcomed everyone. (Chrysanthemum)

[...] so, it is a rediscovery of everything that is good for us and this fight is constant! Now, I am learning to manage this emotional side a lot more and taking care of the physical. I try to lead a healthier, happier life! I try to see simplicity in things, which we only value when we are going through a very big difficulty, an illness! [...] you realize that there is no problem [...] it is a new way of living and thinking. (Sunflower)

Thank God, I’m facing it! I feel the pain, he said that I will have this pain forever, but I am alive, I am walking everywhere! I feel everything! I’m here and I cry alone in pain! Soon the pain will go away but I am here. (Edelweiss)

As survivors, transcending also involves facing life and its possibilities, since, considering that the memories of cancer cannot be erased, they are part of the process of growth and overcoming those who faced such vicissitude.

[...] I don’t stop living my life, I keep leaving home, I don’t hide! If anyone asks a question, I will tell you what I went through, because that is part of it and it does it well. But they say “those who see you will never say, only those who know you! Nobody says you had it and twice!”. I say that you have to face life as it is, leave the bad things behind and go on looking for good things. (Rose)

Involved in the process of constantly overcoming the circumstances that accompany them in this new phase, survivors continue to achieve victories in terms of self-care, related to health and also to the inner being, when they discover that they are able to transcend themselves in the face of adversities that come to them.

Overcoming the ghost of fear

Even after winning cancer treatment, patients live with the presence of fear. In order to alleviate this condition, they create strategies to remove the memories of the disease experienced, involving themselves with loved ones, chores at home and activities that provide well-being.

Because we are always left behind, every time it is time to take the exam, I am worried! I feel a little scared! When I am alone, I go there to pick up my granddaughter, she is up to some mischief. I stay with her and the day goes by and I don’t even think, I forget! I go there in the bush to carp, I go take care of my flowers, I go to the sidewalk and sweep! When you’re doing something, you don’t think about it! (Daisy)

I worry about not coming back again! The doctor said “whoever is alive can die”, and it is true! I think that if the person keeps thinking about the disease, it comes in double! I have my activities, I have handicrafts, I work there and I’m not thinking about any of this, I turn on my radio there and that’s it. (Geranium)

Fear presents itself as a ghost, surrounding them at all times. It appears in a perceived corporal alteration, in the death by cancer of an acquaintance or treatment partner, and in any other situation that brings back the memories of their suffering.

[…] if, suddenly, a lump comes out here, I already tell my friends and they get angry and say “stop thinking about it, any little thing you keep thinking, is it? Is it not?”. As there is a friend of mine who says “so-and-so has died, had treatment with me and has died!”. My God, after so long, so-and-so die, then I can die too! [...] you try not to think, but when something appears, a lump, that’s it! It comes with everything, there’s no way not to think. (Hydrangea)

Yet, the marks left by cancer contribute to avoid daily situations and new care to arise, due to the fear of becoming ill and being vulnerable again.

I used to play in the rain, not today, because I’m afraid of the flu, pneumonia! I don’t make it easy to be cold anymore, which I didn’t do before [cancer]. If the rain is there, I’ll go out with an umbrella! I don’t want to get rain, cold, because I’m afraid my immunity will drop. (Cape Leadwort)

Accordingly, health care in cancer survival requires a constant effort to follow the journey without the disease’s past haunting and diminishing the prospects for a future. For this, daily decision making, changes and overcoming are necessary, making them warriors as long as there is life.

DISCUSSION

Care is inherent to human existence and occurs through relationships with others and with oneself. In these relationships, man’s vulnerability, which is associated with fragility and risk, can be considered a way of manifesting the Being, not necessarily being pejorative. When he is vulnerable, man has limited autonomy, as he is subject to diseases and other problems, but that does not mean that he is inert, unable to decide or do anything about it⁽⁴⁾. Thus, in their existential condition, cancer survivors are also vulnerable, but seeks, in the care relationship with them, to stand out from such condition.

In the second section of Being and Time⁽¹⁴⁾, Heideggerian meditations talk about the meaning of Being, but starting from its totality. In other words, Being-there authentically existing, considering that if, in its daily life, Being-there reveals itself shrouded in obscurity⁽¹⁵⁾, in the temporality of the anticipatory decision of death, it shows its true Being⁽¹⁴⁾. In such a way, when taking care of the self, respecting its own limitations, Being-survivor-to-cancer assumes the authenticity of its Being and, consequently, performs an authentic care devoid of impersonality, as they take on choices and risks. It can be considered that they enter a movement that promotes emancipation of itself, resulting in an immersion in their existentiality⁽¹⁶⁾.

The ontological foundation of the being-there existentiality is temporality. In this temporality, the Being-there reveals to the world its state of openness or clarity. In this state, they apprehend the meanings of what appears around them, either from other beings in the world or from themselves to themselves⁽¹⁴⁾. […] “It is temporality that shows the ek-static movement of existence, i.e., the movement out of itself and towards itself” (free translation)⁽¹⁵⁾. Heidgger also says that, in the anticipatory decision, i.e., in the original and authentic way of caring, man unveils all his power-being, and this power-being is manifested in a temporal constitution. It is a primitive temporality that is temporalized according to three ek-stases, or stages; future, past, and present⁽¹⁴⁾.

In the second section, in the fourth chapter, the philosopher resumes the analysis of care carried out in the first section, but this time, in the light of temporality. In this analysis, he exposes understanding, disposition and discourse. Understanding is based on the future, i.e., understanding, the Being-there throws itself in front of itself always attentive to its concerns. The disposition refers to the past, i.e., to the forgetfulness of having been. The discourse concerns the present, i.e., when it manifests itself to the world, the Being-there presents the being that comes to meet it⁽¹⁴⁾.

Temporality of care can be observed when survivors recover the vigor of having been, remembering what life was like before cancer or surgery, and all the chores they performed naturally. They reinforce and assume the vicissitudes of the present, explaining the adaptations to carry out chores in everyday life, where they understand the responsibility of taking care of themselves and, from then on, make their decisions. It is through this understanding that they act with a view to avoiding future harm, which, in these circumstances, was emphasized when mentioning edema and pain.

Accordingly, they remain intertwined with cancer, as they live on a threshold between disease and cure, i.e., survival. This is because they are not sick, but under medical supervision, with physical changes resulting from the treatment path they once lived⁽⁴⁾. The complaints reported by survivors of this study are mostly due to the limitations and sequelae in the arm resulting from the oncological treatment of breast cancer, which caused a secondary lymphedema. The literature also points out other common complaints, such as stiffness, tingling, limited movement of the arm, fingers and elbow, in addition to changes in sensitivity and the presence of pain⁽¹⁷⁾.

These changes end up influencing the quality and way of life, as they limit not only domestic chores, but also other activities that produce well-being and are therapeutic, such as crochet, mentioned by one of survivors. Thus, they are faced with the choice of their possibilities of being, choosing authentic care when respecting such physical limitations.

The second section of Being and Time⁽¹⁴⁾ also brings the concept of anguish in Heidegger’s thinking. For the thinker, anguish [...] “is not a symptom or a pathological condition, it is a fundamental state of human existence, which brings human beings closer to their precarious and provisional condition” (free translation)⁽¹⁵⁾. […] “Only in anguish does the possibility of a privileged opening remain insofar as it singularizes. This singularization removes the being-there from its decay, and reveals its authenticity and inauthenticity as possibilities of its being” (free translation)⁽¹⁸⁾.

Through the existential openness that anguish allows the Being, it is possible for him […] to “transcend the world and himself” (free translation)⁽¹⁶⁾. It is through transcendence mediated by anguish that the cancer survivor takes on new attitudes in self-care, revealing the way of being authentic, from everyday choices to more intimate changes related to his way of being.

Lifestyle changes after cancer can be driven by the disease itself, the desire to take over health, mitigate the post-treatment effects and recognize the importance of preventing relapse⁽¹⁹⁾. In the face of common, but no less important, choices, it is clear that survivors take over responsibility for changes in the way they eat, essential care, since the adoption of healthy behaviors positively influences survival and quality of life, decreasing, also, the chances of recurrence⁽²⁰⁾.

The literature shows that the proportion of survivors with a lifestyle that includes the practice of more than one healthy habit is still relatively low (23%), but has been growing in the last decade⁽²⁰⁾. Another study, of Dutch origin, with self-administered questionnaires, highlights, among its results, adherence to physical activity among most survivors (87.4%); but, as for smoking, there is an 18% rate of smokers. Regarding alcohol consumption, 18.7% of survivors report compulsive consumption⁽²¹⁾.

These data, even from more developed countries, reaffirm the need to invest in monitoring the health care of this group, considering that the way survivors face their condition, added to motivational factors, can help them in adapting their lifestyle for healthier habits⁽²¹⁾.

In addition to these aspects related to food and lifestyle, transcending oneself after cancer also involves entering a process of self-knowledge, initiated by a survivor after realizing, during her trajectory, that she had lived for a long time in a condition of abandonment. themselves, as noted in their testimony. Heideggerian thinking states that it is in anguish that the abandonment of man to himself is revealed. Finding face to face with his terrible freedom to be or not to be and to remain inauthentic or to fight for the possession of himself⁽¹⁴⁾.

Anguish reveals to be the most proper being-power, i.e., the free-being for the freedom to choose and welcome oneself. Anguish drags the presence into the free-being for ... [propensio in ...], for the property of its being as a possibility of being what it always is. The presence as a being-in-the-world gives itself, at the same time, to the responsibility of that being (free translation)⁽¹⁴⁾.

Following this thought, the anguish faced by some survivors brought them closer to their Being-more-self, where they rediscovered themselves more intimately, and now adopt new attitudes. These attitudes highlight survivors’ rupture with the existential decay experienced before the disease, as reinforced in the words of Chrysanthemum. In her awakening to the freedom to be who she really is, the survivor turns to herself, getting involved in a process of getting to know herself better, her preferences and what brings her joy. From there, he learns to say “no” to other loved ones and to think more about his own well-being.

Another interviewee reveals that he finds himself in “a new way of thinking and living life”, and he managed to appropriate emotional and physical care and also strengthen his spiritual dimension. In that sense, those patients who seek spiritual strengthening usually find more hope. Through faith, they gain the strength to continue their journey in search of survival and healing⁽⁴⁾. As a result, the survivor brought new perspectives and a different outlook on life; she now values simplicity, small things and everyday victories.

Unfortunately, this testimony is not always a reality, because, as a result of the treatment course, life undergoes significant changes that can affect the individual’s plans and identity. This produces a conflict of feelings, alternating with feeling good, because of the end of the treatment, and the sadness of still living with the physical repercussions⁽⁶⁾. We realize this when Edelweiss emphasizes constant coexistence with pain, but, despite this, she emphasizes and shows joy at the fact that she is alive, and thus continues to overcome her existential condition.

The testimonies also reveal that the cancer survivor takes care of himself when he appropriates memories, making them support for growth, overcoming and guiding his way of living in the trajectory of survival. This behavior can be related to the identity of the cancer survivor, when he understands that he lives on a threshold and needs to continue taking care of himself, as many consider that they are at war and need to continue fighting⁽⁴⁾. Thus, remembering the difficulties and suffering experienced becomes a strengthening strategy, encouraging survivors to continue life with courage, aiming for the next victories in relation to continuity of care and maintenance of health.

Therefore, the fact of being-in-the-world makes Being-there a free being, but also a being of choices, especially after experiencing a disease that makes him aware of its finitude, such as cancer. In these moments, the Being meeting face to face with his terrible freedom to be or not to be and to remain inauthentic or to fight for the possession of himself transcends his state of existential fall, discovering his power to be, i.e., to be for himself a Being of care⁽¹⁴⁾.

If, in Heidegger’s analytics, anguish is not a feeling connected to something or someone, it arises from Being-there itself as it becomes aware of its being launched-into-the-world. And, in that being launched, discover its finitude. Fear originates from improper disposition, because fear finds its opportunity in what is approaching it in a harmful way, i.e., unveiling a “malum futurum”. In fear, the Being-there is disturbed before the world, becoming distressed and troubled⁽¹⁴⁾.

It is in order to find refuge in the midst of such affliction that man gets involved in daily activities and commitments⁽¹⁵⁾. This involvement, in this study, reveals itself in the search for survivors for something that distracts them, being achieved through work, activities in the home or taking care of others as resources to face fear.

Fear can present itself in three ways: dread, horror, and terror, which are differentiated by the proximity of the occurrence and its sudden character. Therefore, dread represents a known or familiar threat and, moreover, a sudden one. In horror, the threat is close, but it is not familiar, it is something unknown. In terror, however, threat is suddenly and unknown⁽²²⁾. In the case of survivors, fear is always present, like a ghost that surrounds them. They try to follow life in the best way, they take care of themselves within their means, but the reality of, at any moment, suddenly encountering a new cancer or recurrence is constant, characterizing this fear as dread⁽¹⁴⁾.

Concerning this issue, a Brazilian study carried out with 460 women after treatment for breast cancer showed recurrence in 6.5% of them and metastasis in 25.2% of women followed up in the five-year period⁽²³⁾. Fear of disease recurrence was also reported in an American study⁽²⁴⁾, being present in most patients and also their caregivers. Another study, with 10,969 cancer survivors, carried out in the United Kingdom, reinforces that 50% of the interviewees referred to fear of recurrence, especially those who presented higher risk health behaviors (low level of physical activity and smokers)⁽²⁵⁾.

In a qualitative study, again the uncertainties about the future are highlighted, expressing cancer as something continuous, even for patients in the long term (nine years after diagnosis). Considering that the late symptoms of cancer often prevent the feeling of having “a normal life” again, added to the fact that they do not feel “free” to express their feelings about their health condition⁽²⁶⁾, this dread of something known, which can once again be part of its life, is always present.

It is in the face of these uncertainties about the future that the Being-survivor finds himself thrown into the possibility of death and its finitude, even though this “malum futuro” has been inherent to him since his birth⁽¹⁵⁾. When faced with any bodily alteration or when a follow-up exam is imminent, the uncertainties haunt him, making him look at himself and reflect on his existential condition. Such reflection is opposed to the habitual acting of the Being, who moves away from deep thoughts about death, despite knowing that it is certain, but facing it as something distant⁽¹⁵⁾, i.e., in the way of impersonality.

Fear is improper anguish given over to daily decay, unveiling itself in a veiled way⁽¹⁴⁾. In this sense, it is clear that, upon learning of the death of someone who shared the same treatment, survivors assume the death of the other as a possibility of their own, conferring the idea of an immediate threat, surrendering to a momentary decay. Threat is also recognized in situations that previously did not concern oneself, such as rain and cold. When they perceive themselves as a vulnerable being who needs to care for survival, they worry about not getting sick and keeping immunity strong. Therefore, they also feel more protected in relation to the return of cancer.

Finally, health care experiences, as cancer survivors, reveal that there is involvement and a certain continuity of care by survivors. The path of overcoming, which is continuous, started in the diagnosis, passed through cancer therapy and remained in post-treatment. Survivors remain vigilant in taking care of themselves, recognizing their needs. However, despite these, they hope for new horizons when resuming or rediscovering life.

Study limitations

The study limitations are related to the meanings found and their relationship with the daily lives of cancer survivors involved. Therefore, new studies are suggested with different populations, surviving other neoplasms, in order to expand or corroborate these findings.

Contributions to nursing, health, and public policies

This study provides a better understanding of how cancer survivors take care of their health after treatment, aspects that have not yet been approached in this way in the Brazilian scenario to date, mainly with a deep and subjective view of existential phenomenology.

Important aspects are addressed in this study, such as the weaknesses, adaptations and the longings of survivors regarding self-care, which can subsidize professional care. It is evident, therefore, that despite surviving cancer, survivors continue to lack health care, either in support of living with physical limitations, in orientations about the most appropriate lifestyle and even in relation to emotional support in the face of uncertainties. Therefore, such findings may be of interest not only to nurses, but also to other health professionals, who can be involved in caring for this audience.

FINAL CONSIDERATIONS

Through existential phenomenological analysis, the facets of health care in the daily lives of cancer survivors were unveiled, showing that the process of authentically taking care arises from understanding their existential condition.

These survivors need not only to respect physical limitations, preventing the marks of treatment from getting worse, but also to reinvent the Being itself. In an existential movement of transcendence, they rediscover themselves as people through a constant struggle in which they make more intentional choices thinking in physical and emotional well-being, overcoming difficulties, fear of recurrence, or a new cancer. There is also an overcoming of oneself, and, thus, they project themselves stronger in facing the circumstances that life brings them.

In conclusion, in the health care process during follow-up phase, cancer survivors build their own knowledge that is not always derived from professional guidance; however, it is produced in their daily lives from attempts and successes, from what they perceive in their daily lives that are good for them and that can help them live better without feeling distressed. Anguish is the feeling of nothingness that must be filled.

Therefore, health care in cancer survival needs to be better understood and valued by health professionals. This should occur specially to expand the performance of nursing, in order to preserve the good behaviors already exercised by survivors and also make it possible to resolve doubts and redirect those who need the adoption of more appropriate practices. Therefore, it will be possible to enhance their chances of long-term survival and can enjoy a better quality of life.

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Edited by

EDITOR IN CHIEF: Dulce Barbosa

ASSOCIATE EDITOR: Hugo Fernandes

Publication Dates

• Publication in this collection
  21 Dec 2020
• Date of issue
  2020

History

• Received
  03 Feb 2020
• Accepted
  01 July 2020