Cancer during pregnancy: from the diagnosis to the repercussions on the family experience of maternityABSTRACT
Objective: To investigate how the diagnosis of cancer during pregnancy occurred and assess its repercussions on the family experience of maternity.
Method: Qualitative research, based on Symbolic Interactionism and conducted according to the Grounded Theory method. Twelve women diagnosed with cancer during pregnancy and 19 of their family members participated in the study. Data was collected from March 2018 to March 2019, using an identification form and an in-depth interview. The analysis followed the stages of open substantive coding.
Results: Data were organized into two categories of analysis: Being surprised by the discovery of cancer during pregnancy, which reveals the course of experiencing pregnancy and being diagnosed with cancer, Suffering from the repercussions of cancer on pregnancy and birth, which describes the repercussions of illness in the experience of pregnancy.
Conclusion: Cancer during pregnancy was diagnosed in young women based on signs and symptoms that were confused with those of pregnancy and postpartum. The illness brought anxiety, impotence, fear and affected the experience of maternity, as it prevented women from having their pregnancy as planned and required routines different from those of low-risk pregnancies.
DESCRIPTORS Pregnancy; Neoplasms; Parturition; Family; Qualitative Research; Nursing
RESUMEN
Objetivo: Investigar el hallazgo del diagnóstico de cáncer gestacional, así como su repercusión en la vivencia familiar de la maternidad.
Método: Se trata de una investigación cualitativa, basada en el Interaccionismo Simbólico y conducida según la técnica metodológica de la Teoría fundamentada en los datos. Doce mujeres con diagnóstico de cáncer gestacional y diecinueve familiares participaron del estudio. La recopilación de los datos se llevó a cabo entre marzo de 2018 y marzo de 2019, mediante formulario de identificación y entrevista a profundidad. El análisis siguió las etapas de codificación sustantiva abierta.
Resultados: Los datos estuvieron organizados en dos categorías de análisis: la sorpresa por el hallazgo del cáncer durante la gestación, revelando el curso de vivenciar la gestación y recibir el diagnóstico del cáncer; y el sufrimiento por la repercusión del cáncer en la gestación y en el nacimiento, que describe la lucha de experimentar la enfermedad durante el embarazo.
Conclusión: El cáncer gestacional ha sido diagnosticado en mujeres jóvenes a partir de signos y síntomas que se confunden con los del embarazo y el posparto. La enfermedad trae consigo ansiedad, impotencia y miedo, afectando la forma de vivir la maternidad, ya que se aleja del embarazo planificado e impone rutinas diferentes a las vividas en una gestación de riesgo habitual.
DESCRIPTORES Embarazo; Neoplasias; Parto; Familia; Investigación Cualitativa; Enfermería
RESUMO
Objetivo: Investigar como aconteceu o diagnóstico do câncer gestacional, bem como suas repercussões na vivência familiar da maternidade.
Método: Pesquisa qualitativa, fundamentada no Interacionismo Simbólico e conduzida conforme a técnica metodológica da Teoria fundamentada nos dados. Participaram do estudo 12 mulheres com diagnóstico de câncer gestacional e 19 familiares. A coleta dos dados ocorreu de março de 2018 a março de 2019, por formulário de identificação e entrevista em profundidade. A análise seguiu etapas da codificação substantiva aberta.
Resultados: Dados foram organizados em duas categorias de análise: Sendo surpreendida pela descoberta do câncer na gestação, que revela o curso de vivenciar a gestação e ter o diagnóstico de câncer; e Sofrendo pelas repercussões do câncer na gestação e no nascimento, que descreve as repercussões do adoecimento na vivência da gestação.
Conclusão: O câncer gestacional foi diagnosticado em mulheres jovens a partir de sinais e sintomas que foram confundidos com os próprios da gestação e do pós-parto. O adoecimento foi permeado por ansiedade, impotência e medo, repercutindo na forma de vivenciar a maternidade, já que afastou da gestação planejada e impôs rotinas que distanciaram daquelas vividas em uma gestação de risco habitual.
DESCRITORES Gestação; Neoplasias; Parto; Família; Pesquisa Qualitativa; Enfermagem
INTRODUCTION
Cancer in pregnancy is a rare condition, with one occurrence in every 1000 pregnancies(1). The most common cancer found in pregnant women are breast and cervical cancers, leukemia, melanoma, and lymphoma(2,3). Cancer in pregnancy can be defined, using breast cancer as reference, as the cancer diagnosed during pregnancy or up to one year after delivery(4).
The diagnosis of cancer during pregnancy is a challenge, since the signs and symptoms of the onset of neoplasms can be interpreted as pregnancy-related manifestations, making pregnancy a confounding factor(5). In addition, cancer investigation and staging tend to be less invasive, with tests that are not harmful to the fetus(1). Thus, the difficulty to identify symptoms and the limited detection options seem to delay diagnosis and impact overall survival.
An integrative review(3) that analyzed behaviors related to the diagnosis of cancer in pregnancy found that pregnancy does not accelerate the progression of cancer and that the poor prognosis is related to the late staging of the tumor. The study also reinforced the importance of early diagnosis, which can contribute to a better prognosis, and highlighted the role of a multidisciplinary team in early diagnosis(3).
The literature indicates that the treatment for cancer during pregnancy should always be the closest to the gold standard for non-pregnant women and its beginning should not be delayed by pregnancy, as it can have a negative impact on the survival of the woman(6). Therefore, the diagnosis and treatment of cancer in pregnancy are challenges for the healthcare team, as it is necessary to treat the woman without harming the fetus(7).
In addition to the need for more accurate tests that contribute to early diagnosis and treatment, the psychological observation of women is also necessary(8). Authors state that these women have difficulty dealing with the diagnosis, experiencing fear of dying or losing the baby, mourning for the impossibility of living the pregnancy as planned, and a need to protect the baby in intrauterine and extrauterine life(8).
Illness due to cancer impact and affect the patient and the family and can influence family interactions and dynamics(9). This impact is commonly related to the representations of cancer for individuals and for the society to which they belong, which usually associate cancer with pain, anguish, suffering and death(9).
The families that experience cancer in pregnancy must deal with new demands and difficulties that add to those related to the cancer stage, pregnancy and birth, as serious diseases can disrupt family dynamics. These changes start in the pre-diagnosis stage, continue throughout the illness process, and may last until after the death or cure of the sick person(8).
In this perspective and considering that the analysis of the literature on the repercussions of cancer during pregnancy showed that studies prioritized physical aspects, diagnosis and treatment of cancer, the objective of this study is to investigate how the diagnosis of cancer during pregnancy occurred and assess its repercussions on the family experience of maternity, since there is a gap in the literature regarding these aspects for women and the family.
METHOD
Study Design
This article originated from the data collected for the elaboration of a PhD thesis that aimed to understand the experience of families with a relative with cancer in pregnancy. This is a qualitative study using the theoretical framework of Symbolic Interactionism as the basis for the production and interpretation of empirical material(10) and the methodological framework of the Grounded Theory technique(11,12).
Population
Women who were diagnosed with cancer during pregnancy and their families participated in the study: four were in the first half of pregnancy; five in the second half; and three in the postpartum period. The participating family members were chosen by them. The inclusion criteria for the woman were being at least 18 years old and having a diagnosis of cancer during pregnancy. The inclusion criteria for the family members were having a family bond with the woman (biological, affective, or by affinity) and having accompanied her during the illness and treatment processes.
Two specialized oncology services in two cities in the state of Rio Grande do Sul were initially accessed to find the participants. However, the “snowball” strategy was used to compose the sample(13). The number of participants was determined by theoretical saturation(11).
Data Collection
Data was collected from March 2018 to March 2019, at the patient’s home or at her parents’, friends’ or at an aunts’ place. One interview was conducted remotely via Google Meet. All participants were contacted after the baby was born. The moment of the pregnancy/post-pregnancy cycle when cancer was diagnosed was considered to group the women for the composition of the theoretical sample(11). After obtaining the contact information, the researcher used a phone call or text message to identify herself, present the study, invite the participant, and schedule the interview, requesting the participation of one or more relatives. The participation of family members was required due to the understanding that pregnancy/birth and illness are experiences shared in the family environment and that the opinions of the family members are important to understand the experience.
Initially, data were collected using a form to obtain socio-demographic and clinical information about the women. The interview, recorded and conducted with the presence of all family members, began with the question “Tell me about your experience with cancer during pregnancy (or postpartum)”. According to the content of the answers, other questions were asked. The interviews were conducted by one researcher and lasted from 90 to 130 minutes.
Data Analysis and Treatment
The analysis followed the first two stages of the Constant Comparative Method proposed by the Grounded Theory: comparing incidents applicable to each category and integrating categories and their properties(11). To organize these data, open coding was used as guided by the methodological framework(11). Data circularity was applied throughout data collection and analysis. The software QSR Nvivo® Pro, version 12, was used for data organization. The interviews were transcribed in full and coded line by line. Each incident found in the interviews was examined for what it represented and given a name, called a code. Each incident, transformed into a code, allowed the identification of properties of the experience, so that it could later be added to others that expressed the same kind of behavior and constitute categories. The comparison between the codes and between the categories, the elaboration of new categories, and their grouping were done throughout the whole analysis, demonstrating how the phenomenon occurred.
Ethical Aspects
All participants signed the Informed Consent Form (ICF) and voluntarily agreed to participate. The study met national and international standards of ethics in research involving human beings and was approved by the Research Ethics Committee, protocol # 2.435.385/2017, in accordance with Resolution No. 466/2012, of the National Health Council. To guarantee the anonymity, the narratives were identified by the letters W (woman) and F (family), followed by the numerical order in which the interviews were performed and transcribed.
RESULTS
Twelve women diagnosed with cancer during pregnancy and their relatives were interviewed – six mothers, nine spouses, a brother-in-law, a friend, a father, and an aunt. When the cancer was diagnosed, the women were between 26 and 41 years old (six between 26 and 31 years old; four between 32 and 36 years old; and two between 37 and 41 years old). All of them had a partner and self-identified as white. As for level of education, eight had completed higher education, three had completed high school and one had completed elementary school. Five received care in the Unified Health System (SUS) and seven in the complementary system. Ten were diagnosed with breast cancer; one with cervical cancer; and another with Hodgkin lymphoma. Four babies were born at term, five were premature and in three of them the diagnosis was given after birth, when the child was less than four months old.
Regarding the type of treatment, women with breast cancer underwent chemotherapy, radiotherapy, and surgery. The pregnant woman with cervical cancer had a hysterectomy soon after the birth of the child and the woman with Hodgkin lymphoma underwent chemotherapy and radiotherapy. At the time of the interview, two women were considered cured. The others were in remission and remained on some medication, chemotherapy or radiotherapy.
With the constant comparative method, the results were organized into two analysis categories – Being surprised by the diagnosis of cancer during pregnancy and Suffering from the repercussions of cancer on pregnancy and birth –, which were formed according to subcategories that are, in the text, represented in italics.
Being surprised by the diagnosis of cancer during pregnancy reveals the course of discovering and experiencing pregnancy and, in the meantime, being diagnosed with cancer and needing to cope with it. This category contains three subcategories.
Diagnosing cancer during pregnancy: the perceptions and actions related to bodily changes suggestive of cancer; the diagnosis of cancer during pregnancy; and, despite the difficulties faced, considering pregnancy as the opportunity to be given an early diagnosis.
At first, the symptoms suggestive of cancer were identified by the woman and the family, and by the health professionals. However, they were disregarded, as they were interpreted as resulting from pregnancy, since they resembled the possible changes arising from hormonal changes in pregnancy and postpartum.
I felt a lump in my breast, but I thought it was milk because it hadn’t been too long since I weaned my second child. I spoke to my mother, and she also thought it was that too. That is why it took me a while to show it the doctor. (W1)
When the body changes did not recede or did not settle with the indicated treatment in the postpartum period, the woman had diagnostic tests. In the process of looking at themselves, reflecting on what was happening and thinking that something was wrong, the women determined their actions (self) in the situations presented: first, they shared the body change perceived with a relative, and then, together, they sought professional assistance.
I was also finding it very strange. She did everything they said, she massaged it, breastfed the baby, pumped the milk, but her breast was still hard. Nothing worked, that’s why we decided to see a doctor, who asked for an ultrasound and biopsy. (F10)
The diagnostic tests and the wait for a definitive result generated anguish, as the woman and her relatives lived moments of apprehension and doubts. Dealing with the possibility of cancer when celebrating a pregnancy or the new arrival of a baby was a situation for which they were not prepared.
In addition, due to pregnancy, post-surgery pain medications were contraindicated, which sometimes caused considerable discomfort for the woman and affected her family group. Family members, in turn, felt apprehensive and powerless for not being able to help in these moments of pain. In addition, they reported difficulty to accept the experience of such discomfort of a family member who was pregnant.
The postoperative period was very painful, I had a lot of pain and could not take medication because I was pregnant. Everyone cried; it was very difficult for everyone here at home. (W5).
Pregnancy was perceived by the family as a hindrance to diagnostic procedures but, at the same time, it was defined as an enabler for an early diagnosis. They attributed the diagnosis of cancer to the pregnancy, which contributed to early treatment and the consequent cure of the disease. Sometimes, this understanding resulted from the interaction with health professionals, who affirmed that the symptoms of cancer only became more evident due to pregnancy, which allowed making a diagnosis that would perhaps only be possible after a few more years, when it would be characterized as late.
Luckily, I was doing prenatal care and my doctor always performed a breast exam. Then, as soon as the lump appeared, she noticed. (M8)
Facing illness shows that, when faced with the unexpected situation, the woman and her family expressed feelings of anxiety, impotence and fear. Pregnancy started to be a factor of anxiety and aroused, in addition to the normal concerns of the pregnancy-puerperal cycle, feelings that were different from those related to a healthy pregnancy or associated with pathologies specific to pregnancy.
It is surreal. We are enjoying the pregnancy, telling our friends, and then there’s a bomb like that, it’s as if the ground opened up all at once. How can you have and treat cancer with a baby in your womb? How? We were very anxious and scared! (W5)
When interacting with an unknown matter – cancer during pregnancy – the feeling of fear was constant throughout diagnosis and treatment. There was the fear of losing the child and the woman and the fear of the possible repercussions of the treatment on the well-being and health of both the mother and the child. Fears were related to not knowing what would come or how the woman and the child would experience the diagnosis and treatment stages. Furthermore, in addition to these fears, there were also the stigmas associated with cancer, referring to suffering and loss.
The first thing that comes to mind is death. What about the baby? How is it going to be? If I could change all that, but I can’t, it’s one day at a time, not knowing how the next day will be like. From an immense joy to a deep fear of everything. (F1)
When the family received the diagnosis, they start to recognize themselves in that condition and face the treatment stages. The experience of cancer brought memories of situations experienced with other family members who also had this diagnosis. When rescuing these experiences and considering them in the present, they believed that the suffering and losses related to cancer would happen again, which made them make decisions based on despair and impotence.
Her godmother also had uterine cancer and died; they were very attached. I saw that she was suffering a lot and I was worried when she said: this is my destiny; I’m going to die like my godmother, from the same cancer. (F2)
Seeking alternatives to deal with the situation: the interactions established sought to identify alternatives that could help in coping with the physical and emotional conditions of the illness and included information on the disease, help from the multidisciplinary team, and the use of medications to control anxiety.
You know how it is: she went straight to Google and there’s nothing but bad news there. I said to stop doing that and we started to ask everything to the doctor and believe in what he told us. (F4)
I looked for help for me and my mother. We both went to the psychologist. And the nutritionist also helped me because I could not eat. (W12)
In the process of understanding what they were experiencing, they reported the lack of possibility to interact with people who have also gone through cancer during pregnancy to share fears and experiences. They could access people who had the same type of cancer and treatment, but felt different, as they needed to deal with this diagnosis during or soon after a pregnancy.
I didn’t know anyone who had had cancer while pregnant. I didn’t even know this could happen. But I talked a lot with other women with breast cancer. It wasn’t the same thing, but it helped. (W4)
In this scenario, to deal with the situation, they found comfort and strength in the religious belief that God was present in their daily lives and in their decisions. They thought that if He allowed the disease, it was because they would be able to beat it. The importance of faith in a superior being was reinforced when the children were born healthy, and tests demonstrated the disease was controlled. The family then understood that the positive results were God’s blessings.
It was her faith that made us believe that everything would work out fine. Because at the beginning I didn’t have hope. She helped us to have faith and believe that it would pass. (F10)
The woman and her family also established relationships of help and received and recognized the importance of the support of the social group and the health professionals. The support of the social group occurred through prayers, spiritual guidance from the pastor, moments of conversation when they could share fears and concerns. Some mentioned participating in a WhatsApp group with women from different states of Brazil who also had cancer during pregnancy, where they could exchange experiences and find emotional comfort.
All family members and friends were important in the most difficult times. We received help and prayers from many people, even those who were far away. (F3)
I went to see the pastor a lot. Almost every week, he gave me peace. (W9)
The WhatsApp group created by B. and L. was what helped me. I met women who were going through the same thing as me and saw that it was possible to overcome cancer during pregnancy. I was not the only one who was going through this. (W5)
In the online group chat, the different moments experienced by each member and the positive outcomes allowed the exchange of information and encouragement.
Suffering from the repercussions of cancer on pregnancy and birth describes the repercussions of illness on the experience of pregnancy, which represents “life”, while illness represents the possibility of death. These repercussions are presented in the perspective of the losses they bring to the experience of the parenting that was idealized. The category is made up of three subcategories.
Seeing themselves between life and death demonstrates that, when the diagnosis of cancer was confirmed, the family found itself having to make decisions that ranged between the need to cope with a serious disease, with early interventions in the perspective of cure, and the possible impact on the life that was on its way. They defined the situation as ambiguous, with cancer and pregnancy, and expressed they were fighting for two lives.
It is like being on a seesaw: the pregnancy and the baby on one side, and the cancer on the other. (W9)
It’s happiness for the baby, sadness for the disease, and fear for both (…) (F8)
Illness from cancer can make the woman feel distant from her pregnancy, as it opens up space for doubts, fears, and insecurities, which sometimes do not allow pregnancy and birth to be experienced in its fullness.
I can say that I didn’t experience the pregnancy, because I was being examined all the time, chemotherapy, surgery, and then the baby was born. You know that thing of enjoying pregnancy? We didn’t have that. It was different, very different from what we thought it would be.” (W4)
The families mentioned moments they experience which, due to the meaning attributed to pregnancy, were not part of this context, such as chemotherapy sessions, surgical procedures and being distant from the family to carry out the treatment. These events can even cover up the happiness related to the pregnancy, which is replaced by anxieties related to the health of the woman and the child.
Being concerned about the outcome of the pregnancy and the limitations for childcare addresses the difficulties in relation to the decisions that needed to be taken due to the diagnosis of cancer during pregnancy. Given the possible repercussions of the treatment for the baby, the medical team advised the family to consider the possibility of therapeutic abortion when the woman was in early pregnancy and needed to start chemotherapy as soon as possible.
The anguish and doubts experienced with the treatment options and the possibility of therapeutic abortion led to family conflict, as the group found itself at an impasse: some agreed with abortion due to the favorable results of chemotherapy and/or radiation therapy; others, for reasons that were mostly affective, moral and/or religious, took a stand for the maintenance of the pregnancy. As a result, the family disagreed, interacted, reflected on the reasons for both positions, pondered and, despite the divergences, chose to maintain the pregnancy.
I was very mad when I heard from the doctor that I would have to have an abortion. Never! I will fight for my life and for my daughter’s life. If we got in this together, we will leave together. (W1)
I was very confused. I did think about removing the uterus and ending this once and for all. I won’t deny it, I didn’t want to die. My husband wanted to wait. It was a very difficult decision. In fact, I think we never really decided. We just rolled with it… (W2)
When the family chose to keep the pregnancy, or if the cancer had been diagnosed in the second half of the pregnancy, treatment was initiated, and other concerns became part of the family’s routine. During the remainder of the pregnancy, they constantly experienced the possibility of a miscarriage.
It was one day at a time, always with that feeling that we could lose the baby at any time. After chemotherapy, my wife always asked for an ultrasound to see how the baby was doing. This calmed her down. (F5)
In addition to the concerns about the woman’s health, such as the possibilities of side effects from chemotherapy, progression of the disease, and unresponsiveness to treatment, they experienced insecurities about the evolution of the pregnancy and whether it would go full-term or be in condition for the healthy birth of the child.
Getting chemotherapy during pregnancy was the opposite of the information they had so far about possible medications during pregnancy. This caused uncertainties regarding the formation of the child that was being generated and who would receive medications that could interfere with their intrauterine development.
That’s exactly what she said: first you couldn’t take medication for your headache, and now they were talking about chemotherapy? During pregnancy? We couldn’t understand how that would be possible. We even talked about postponing it until after the birth, but then we were afraid that it could be too late. (F7)
The need for treatment and adaptations in daily activities, as well as the impossibility of breastfeeding affected the experience and the perspectives of future regarding maternity. It was identified that cancer caused losses in the experience of motherhood of these women, as they could not share with the child everything they once imagined. This had direct repercussions on the family, who suffered and, due to the woman’s difficulties, had to have someone among its members to take care of the child. Not being able to breastfeed was something that significantly affected the woman’s experience, generating anguish and sadness, as breastfeeding was perceived by the family as part of maternity. This impossibility led to a perception that ‘something is missing’, that part of maternity will not be experienced.
What made me suffer the most wasn’t the treatment, it was not being able to breastfeed. I felt incomplete, that I was an incomplete mother, who could not even give the best food to her child. It took me a while to accept this, in fact I think I haven’t accepted it until today. (W7)
Guilt was also present, as there was a feeling that the child would not receive what everyone considered to be the best food, breast milk, and, therefore, could suffer physical consequences in the short and long term. They also referred to weak immune system, more frequent respiratory diseases and learning difficulties at school.
With each colic crying, my wife thought it was because of the formula and felt guilty because she couldn’t breastfeed him. (F6)
After delivery, mixed with moments of happiness with the healthy birth of the baby, the fear of losing the woman who was still treating cancer remained, as she was still feeling the effects of chemotherapy and experiencing limitations to care for her child. Family members identified that the woman suffered for not having more time with her child. The situation experienced was perceived as a restriction in the relationship between mother and child, as they were sometimes more distant than what they would like to be or what had been imagined by the woman.
DISCUSSION
Although the characteristics regarding age and type of cancer among the women in this study coincide with those of other studies(4,6), the information provided here is relevant and contributes to raise awareness among professionals on cases of breast cancer in young pregnant and postpartum women, as these situations can affect the planning and expectations of the family as a unit.
The interactions during the transition to parenthood represent, at the same time, one of the most intense joys and one of the most significant and stressful changes that will occur during life(14). However, this does not happen only because a new member is received into the family, but because this moment represents important changes in life, whether they are expected or not by individuals, by the family and in their relationships(14).
The study revealed that the women and their families were surprised by the diagnosis of cancer while they were preparing to receive a new member in the group. This situation required them to interact with something new, which significantly affected the way they began to experience both pregnancy/birth and cancer, as these events, per se, had contradictory meanings for them up to that time, representing life and death, respectively. These events were defined as factors that caused suffering in the family, as both pregnancy and cancer demanded changes in their daily lives, with the need to define what they were experiencing and to signify cancer during pregnancy.
The scientific literature highlights that there is a risk of delay in the diagnosis of cancer during pregnancy, especially in relation to breast and cervical cancer. This happens due to several factors, including the rarity of the situation (which makes it difficult to think about the diagnosis); the signs and symptoms of cancer (confused with those of pregnancy); physiological and anatomical changes of pregnancy (may compromise the physical examination); and because imaging tests (of the breasts) are not routinely included in the monitoring of the pregnant women(15), which was evidenced in the participants of this study.
Women diagnosed with cancer during pregnancy feel distressed when dealing with the situation. Those who interrupt pregnancy or have a miscarriage during treatment may be particularly vulnerable. Even after the end of treatment, they may remain anxious about the health of the children exposed in utero to chemotherapy or radiation, their future fertility, and the safety of another pregnancy(16), which was evident in the reports of the women and their families.
A qualitative retrospective study that explored the psychosocial experiences of pregnant women diagnosed with breast cancer during or shortly after pregnancy found high levels of anxiety; it also mentioned that anxiety was associated with the conflict between the concern for the baby’s health and their own health and well-being(17). These women attributed different meanings to their experience of pregnancy and motherhood, and made choices based on their beliefs, values, and family relationships. The support from family and health professionals allowed them to adapt to the new situation experienced(17). This is in accordance with the experiences lived by the study participants.
When there is a diagnosis of cancer during pregnancy, feelings of hopelessness and fear of death may be intertwined with feelings of joy and difficulties that are characteristic of the experience of maternity. Pregnant women with cancer are more likely to experience anxiety and concerns over time than other women diagnosed with cancer(18). The frustration of expectations is also present, as it is an experience that represents an interruption on the natural course of life(18). On the other hand, the studies found that the suffering caused by the illness can be alleviated by the experience of pregnancy, since this moment can bring feelings of hope, optimism, and belief in the possibility of the future of their children.
The actions of the women and their families during the illness resulted from a process of interaction and interpretation(10) of what was happening. In this sense, their decisions and actions depended on how they defined the current situation, on their interactions, and on their thought process when the diagnosis was made. Their past and the previous experiences with cancer were part of this, as the woman and her family remembered the illnesses and thought about their consequences. This perspective helped the group to define the present, determining their way of acting in the situations that occurred.
In addition, the cancer in pregnancy, as a social object, gave rise to mixed feelings in the family. This affected their definitions and actions(10), as they were confused and did not know if they should invest themselves and dedicate their efforts to pregnancy, to organizing the home to receive the child, or to the fight against cancer and the care for the women. The study evidenced that the interactions established during the experience follow a symbolic pattern of duality, as cancer in pregnancy represents an experience that contains in itself two natures or two principles, life and death, the beginning, and the possibility of an end. During the interactions in which they shared this reality with others, they communicated symbolically, assumed the role of the other and interpreted the actions of each other. In this sense, women and families redefined illness and acted considering that it was possible to overcome cancer and have a healthy child.
The way the families referred to illness from cancer expresses the characteristic of the symbolic interaction shared in the culture of the society in which they live(10). where a stigmatized conception of “cancer as a synonym of death” still prevails. Although this perspective can fuel the historical stigma and, somehow, influence the early detection that leads to timely treatment and reduces health promotion measures, it was noticed that this did not happen with the families participating in the study.
Based on the relationship established between cancer and suffering/death, study participants reported fear for the loss of the woman and the child and for the possible repercussions of the treatment on the well-being of both. To face their fears, they sought information about the disease, support from friends and professionals, and new information and support networks. This information endorses the need for health professionals to establish, with those who are cared for, a space to talk about their fears and encourage them to find strategies to deal with them. As shown in the results presented, interacting with those who went through the same situation, even if at distance through WhatsApp groups, is a promising strategy that can be encouraged.
The comprehensive care of women with cancer during pregnancy and their families is a challenge for the health team, with emphasis on nursing professionals, who are part of women’s health care at different stages of the life cycle, both in physical and psychosocial aspects. It is necessary to design and discuss emotional care for coping with the diagnosis of a potentially fatal disease in a situation in which the beginning of a new life is celebrated. Special attention should be given to the announcement of bad news so that stable and trusting relationship between the health team and the patient can be developed(19). The challenges of this care are related to dealing with emotions such as fear of death, hopelessness, and the woman’s concerns about her future, or her child or family’s future, intertwined with the joy of being pregnant and becoming a mother.
From an interactionist approach, it is understood that the way they act in the situation is the result of shared symbolic interaction, in which the interpretation and definition of the situation leads to a common perspective. From that, individual actions are aligned so that everyone cooperates to solve the problem(10,20). This is demonstrated by the fact that pregnancy and birth initially complicate the experience of cancer, in the same way that cancer does for experience of pregnancy, as the family cannot see favorable outcomes. In view of this finding, it is relevant that professionals who take care of these families, especially nurses, see them as a unit, whose members act according to their interactions. Therefore, it is important to contribute towards them being able to express their needs and mobilize their potential to cope with the situation. For this, the nurse must use strategies for interventions and evaluation of these families(21).
The limitations of the study refer to the fact that the participants were young, had a partner and, with one exception, had completed high school. Women with cancer during pregnancy and families with different social characteristics may have other experiences regarding the illness(22).
CONCLUSION
The diagnosis of cancer during pregnancy was given to young women based on signs and symptoms that, at first, were confused with those of the postpartum/pregnancy period, mainly changes in the breast. These findings were initially shared with family members and later with health professionals. The illness brought anxiety and feelings of impotence and fear.
Women and their families tried to find options to deal with cancer during pregnancy, seeking information, relying on spiritual beliefs, and establishing supportive relationships with friends and extended family. The lack of contact with other families who have gone through the same situation, due to the low incidence of this type of cancer, motivated the creation of online groups so that, even if physically distant, they could exchange experiences and support.
Cancer during pregnancy was seen as a factor with repercussions on the experience of maternity, as it prevented women from having their pregnancy as planned and required routines different from those of low-risk pregnancies. Also, it drifted the woman apart from the care of her child, especially breastfeeding.
REFERENCES
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Publication Dates
-
Publication in this collection
10 Sept 2021 -
Date of issue
2021
History
-
Received
25 Nov 2020 -
Accepted
18 May 2021
