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Canadian Oncology Nursing Journal logoLink to Canadian Oncology Nursing Journal
. 2025 Mar 1;35(2):361–367. doi: 10.5737/23688076352361

Moral distress among family caregivers of people with cancer in palliative care: A qualitative study

Ana Júlia Rozo 1, Milena Schneiders 2, Mateus Rodrigo Palombit 3, Kassiano Carlos Sinski 4, Rafael de Lima Carmo 5, Ana Cláudia Mesquita Garcia 6, Jeferson Santos Araújo 7, Júlia Valéria de Oliveira Vargas Bitencourt 8, Rosana Aparecida Spadoti Dantas 8, Vander Monteiro da Conceição 9,*
PMCID: PMC12379905  PMID: 40873897

Abstract

The study aimed to understand the triggering events of moral distress according to the family caregivers of people with cancer in palliative care. This is a longitudinal qualitative approach study, using the concept of moral distress as an interpretative reference. Ten family caregivers participated in in-depth interviews. The data were analyzed according to the inductive thematic analysis technique, and two themes were identified. In the first theme, entitled “The repercussions following diagnosis,” participants reported the uncertainties they experienced following their family member’s cancer diagnosis. In the second theme, entitled “The transformation of daily life”, participants expressed how providing care for the family member with cancer changed their daily lives. While experiencing the role of a caregiver, they faced dilemmas and uncertainties that led them to feel moral distress, since this situation will follow them continuously until the outcome of the disease.

INTRODUCTION

In 2019, the World Health Organization (WHO) expanded the concept of palliative care, describing it as an approach to care that aims to improve the quality of life of patients and their families experiencing life-threatening illness. The focus is on the prevention and relief of suffering through early identification, correct assessment, and treatment of pain and other issues in the physical, psychosocial, and spiritual dimensions (Llop-medina et al., 2022). According to the current concept of palliative care, people diagnosed with a life-threatening illness and their caregivers are perceived as a ‘unit of care.’ Informal caregivers, often family members, perform day-to-day care and are the reference for the continuity of healthcare for the patient (Von Blanckenburg et al., 2022). In this context, the involvement of family caregivers in the patient’s disease trajectory is clear.

Cancer, as a longitudinally progressive disease, poses the potential risk of caregivers of people with the disease experiencing high levels of distress and physical fatigue (Taylor et al., 2021). Based on the patient’s clinical course, the care may entail everything from financial costs to time spent providing care, transforming the family member(s) into caregivers. This unexpected transformation of the family member’s social role has been found to be emotionally draining for many of those involved (Leguía et al., 2019; Ringborg et al., 2021; Gunn et al., 2022). The acute stress generated by the caregiving process can impair the physical and mental health and well-being of the caregivers (Segrin et al., 2018; Peterson et al., 2020).

Stress is a term recurrently used to describe experiences with uncomfortable psychosocial phenomena and can be classified into three types: sustress (inadequate stress), eustress (good stress), and distress (bad stress; Lu et al., 2021). When stress is mentioned, it refers to the exposure of the individual to stressful factors that can lead to a range of responses from the individual and, consequently, have repercussions on the person’s sense of balance (Lu et al., 2021). The concept of moral distress in this study is conceptualized as potentially emerging from a stressful situation. The feelings of moral distress arise when an individual finds themselves in a situation where they feel they are unable to act morally; that is, being unable to act according to their core values and responsibilities regarding what they perceive as correct or good. They experience personal distress stemming from seeing another person’s suffering and being unable to act in a manner they see as ‘right’ (Hamric, 2014).

It is hypothesized that moral distress is experienced when the environment or institutional obstacles impose limits on a certain action, at a time when the individual knows what to do, but is restricted in doing so and, thus, experiences negative emotions (Deschenes et al., 2020). This concept of moral distress has sparked the interest of researchers to produce knowledge regarding this theme and developing its conceptual maturity.

Authors who have synthesized the available knowledge on moral distress experienced by nurses working in critical care units have reported that the lack of interventions, when moral distress is identified in these professionals, may have an impact on the nurses’ health and, consequently, on the care provided to patients (McAndrew et al., 2018). This may also be the case for family caregivers. In an investigation aimed at identifying the ethical challenges experienced by bereaved family caregivers, two paths linked to ethical challenges were revealed: difficult decision-making and the lack of options for this decision-making. In short, morally disturbing situations occurred during the patient’s illness trajectory, such as emotional stress, conflict with one’s own expectations and moral values, which culminated in moral suffering. Whether during the course of the patient’s illness or after the death, there can be what is called residual moral suffering (Ullrich et al., 2020). Thus, moral suffering is an element present in individuals who provide healthcare, as the family caregiver, when this care is linked to ethical and moral dilemmas.

While clear evidence of family caregiver moral distress has been reported, little is known about the events triggering this distress. Therefore, the present study aimed to understand the triggering events of moral distress according to the family caregivers of people with cancer in palliative care. We hope to gain a new understanding of moral distress in family caregivers and to use it to create strategies to mitigate this problem in nursing practice.

METHODS

Design

This is a longitudinal qualitative approach study using the concept of moral distress as an interpretative reference. In longitudinal qualitative research, time is not simply linked to trend data or linear trajectories. The focus of the research is directed toward a particular phenomenon experienced by participants during a temporal interval, enabling a deeper understanding of experiences occurring through a cultural shift. The approach explores the detailed textures of social life through the use of multiple data collection methods (Neale & Flowerdew, 2003). This study’s report was structured to align with the precepts of the Consolidated Criteria for Reporting Qualitative Research (COREQ; Tong et al., 2007; Souza et al., 2021).

Ethical Considerations

The project was approved by the Ethics Committee for Research with Human Beings of the Federal University of Fronteira Sul, under Protocol No. 3,695,977 and Ethics Appreciation Submission Certificate (CAAE) No. 21868719.2.1001.5142, on November 11, 2019.

Participants

The study was carried out with caregivers of cancer patients receiving palliative care in a cancer treatment hospital in southern Brazil. The participants were contacted after permission was received for the admission of the responsible researcher into the referred healthcare service for monitoring their routines and, subsequently, selecting the participants.

The selection of potential participants was carried out once a week by one of the researchers. The selection was carried out consecutively by approaching the caregivers who were providing care to their relatives during hospitalization from October 1, 2021, to December 24, 2021. The following inclusion criteria were established: being an adult (18 years or older), being a family caregiver, and providing care to the relative with cancer hospitalized in the study hospital during the period determined for data collection.

A total of 26 caregivers were invited to participate in the study. Sixteen did not accept the invitation. The reasons stated by them for declining included lack of interest in participating in the study, having no time to answer the study questions, and lack of ability to use digital technologies. The last reason was related to the need to attend the interview online with the use of a videoconference application.

Data Collection

For data collection, the research team designed an interview script with the following questions:

  • Providing care to someone else leads to what consequences in your life?

  • Have you ever felt worried, stressed, upset, and/or afflicted by providing care to your family member? What is your perspective on this experience?

  • Tell me about your experience regarding moral distress when caring for a familiar person with cancer in palliative care?

Throughout the interviews, other questions could be asked to the participants with the purpose of better understanding and delving deeper into the topics being discussed.

The interviews were carried out by the responsible researcher (a female nurse trained in interviewing for data collection in qualitative research) and supervised by researchers with expertise in qualitative studies, who are members of the research team. Each participant was interviewed two times on average, with each interview lasting approximately 45 minutes. The interviews were audio-recorded for posterior analysis. For the participants who engaged in two interviews, the interval requested by family members for the second interview was approximately 30 days. However, for four participants, the second interview could not be scheduled due to the following reasons: death of the sick family member (1 participant); problems with the internet connection (2 participants); and lack of time (1 participant). For these individuals, it was decided to respect their situation and use only the information collected in the first interview for data analysis.

The research team concluded data collection when it was sufficiently rich and diverse, contextualizing the saturation of the process (Rahimi & Khatooni, 2024). As more than one interview was carried out with some participants, the second interview was used to validate the data collected during the first interview. The researcher repeated the questions and asked the participant to confirm what had been discussed previously. In the case of one-time interviews, the participants’ perceptions were shared (without identifying the participant) with the others, to cross-reference experiences and deepen the data. The interviewer’s perceptions, during data collection, were registered in a field journal, along with other situations experienced during the course of the study.

Data analysis

Data collection and analysis were carried out simultaneously. Each interview was analyzed based on the inductive thematic analysis (Braun & Clarke, 2019), using the manual transcriptions and familiarization with the data. Subsequently, the data were coded and recoded by the first author nurse, and representative themes were designed based on all participants’ reports and were strengthened from each interview with the caregivers. After, two of the researchers with experience in qualitative studies revised the analysis process, there were no disagreements on this process. The analysis process resulted in the production of two themes, namely, the repercussions following the diagnosis and the transformation of daily life.

Rigour

The methodological rigour was established in compliance with the nine strategies that aim to guarantee a higher level of validity and credibility in qualitative research (Noble & Smith, 2015). These strategies included 1) before and during data collection, the researchers sought to identify and list the elements that could influence the results; 2) biases in the selection of participants were identified; 3) the difficulties experienced were recorded in a field diary; 4) the experiences reported were compared in order to obtain varied perspectives of the phenomenon under study; 5) the data analysis process aimed for clarity, which led to the representation of a mind map (Figure 1); 6) excerpts from the participants’ speeches were selected to substantiate the themes identified in the analysis process; 7) the data collected were discussed with the entire research team to reduce flaws in the research; 8) the participants’ speeches were validated by carrying out more than one interview with more than one participant; and, 9) the researchers sought to associate the interviews with the field diary records in order to obtain consistent data regarding the participants’ experiences.

Figure 1.

Figure 1

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Synthesis of the Interpretative Process of Theme Development

RESULTS

Among the 10 family caregivers participating in the study, two were male and eight were female, aged between 27 and 65 years old. All had completed high school, were formal workers, and had been providing care between four months and two years. The participants’ names were replaced by fictitious names when mentioned in the text below.

The analysis of the interview transcripts allowed the researchers to understand the participants’ experiences and interpret how the experiences resulted in moral distress. Data were synthesized into two themes. For each theme the participants’ quotes are provided, which represent the experiences shared by all of them and illustrate the themes produced (caregiver names are pseudonyms). For a visual presentation of the data analysis, Figure 1 was prepared as a visual presentation of the data analysis and represents how distress occurred in the caregivers’ experience.

Theme 1: The repercussions following diagnosis

Initially, the participants reported the uncertainties they had experienced following their family member’s cancer diagnosis.

“Look, it’s difficult, very difficult! Because gosh, in the beginning it is a big scare, you don’t even know how to react, everything is new... My God, what is this? How much time does she still have? It is difficult because we put ourselves in her place, we are afraid and anxious. Family members who care for an oncology patient still have to go through life, and when she’s happy, we are happy too, when she’s suffering, we become more stressed, more worried, it’s difficult, I don’t know if psychology explains this, but your heart never gets a break, we are never prepared for what’s ahead! My aunts tell us to pray, so that she won’t suffer, okay, I don’t want my mother to be bedridden, but I also don’t want her to go soon, so we are never sure about the future.” (Lourdes, daughter).

“Sometimes I feel insecure, uncertain, I don’t know what to do, whether what was done was the best way, I’m afraid of making a mistake, afraid that maybe a mistake could be harmful somehow, this week I was really stressed and anxious [...] we noticed that he gets nervous with that pain, and we are together, you know, but we can’t do anything, we tried making some tea, we’ve tried several things, the doctor’s medication, but nothing works, so we are also anxious.” (Estela, wife).

“Look, I will tell you that the way we see things is very important, at first, it’s different from saying that we have cancer, although medicine has improved a lot, we are still a bit afraid in the beginning, right after learning the news, right? Because it’s just the two of us, and we’re afraid that the treatment may not lead to the expected results, and finally, I was afraid because we have small children, because he is my partner, because he is the father of our children, it is scary to think that I will... bah! (Field note: Bah can mean astonishment or admiration in this context).… If things don’t happen as I hope, I will be alone with my little ones here, and then how will things be? [...] As soon as we learned the diagnosis, it was like a bomb had exploded in our lives, because everything became quite uncertain, we end up over-thinking things, I think I’m not alone in this, all humanity is like that, we like to think that everything is stable, it’s an illusion that we create in our heads.” (Joana, wife).

Then, the participants described how their experiences led to the emergence of significant emotions in their life stories.

“It’s a new experience and I could classify it in two ways, if it wasn’t a family member, if it was not my son, maybe it would be easier to manage it, but it’s a difficult experience, it’s difficult because it’s my son [...] I get very emotional when I’m talking about it, if maybe we had another degree of kinship, maybe it would be easier, it’s the natural law of life, it makes it more acceptable, but in this reverse order it’s difficult, you ask yourself: Why me? Why would it have to be me?” (Neno, father).

“He’s a family member, he’s my father, we take good care of him and are always looking out for him, staying close to him, because this illness destroys the person, it lets him down, both the one who takes care of the person and the one who has the illness. I wonder, if we are feeling bad, like me, my siblings, my mother, then imagine how he must be feeling, imagine what goes through his mind! [...] Especially since my father was already showing signs of depression because of this disease, so sometimes we catch him wanting to cry, but we always try to be more attentive, not to leave him alone, we try to distract him!” (Gi, daughter).

“It’s complicated, because seeing the person in pain is the worst; if we give them medicine and manage it, it’s fine! But when they go through a lot of pain, it’s so difficult! And, as you see, he has this problem in his mouth, he drools a lot, he feels a lot of shame, I think that this is the worst problem for me, it gives me the feeling of despair, but I’m fighting on [...] I didn’t feel afflicted, I really felt anguished, you get that bad feeling of not knowing what to do. This time, in the first two days, he couldn’t get out of bed, he was always in bed, peeing in bed, he had to do it using a portable urinal, it was very difficult for him to eat in bed, then the nurses came in and had to help him, he was very weak, it was quite complicated, but I’m learning to deal with it a little bit.” (Alberto, son).

Theme 2: The transformation of daily life

In their reports, participants express how providing care for their family member with cancer has changed their daily lives.

“You realize immediately that everything you have prioritized changes, your life compass changes, everything changes, a person who doesn’t change or doesn’t understand must be very insensitive, actually, totally insensitive indeed! From a scale ranging from 1 to 10, nine people will change, there will be only one person who will not be sensitive, nine will change for sure, because “it turns everything inside out.” (Field note: To turn inside out means to completely change a given situation) [...] Life changes completely, it “turns inside out,” everything that you had, what was planned, your compass, the goals you had, everything becomes secondary, you no longer pay attention to these other things.” (Neno, father).

“It changes the life of the caregiver completely, because your life organization becomes totally different, for instance, I know that on certain days I am going to the hospital with the patient, so I have to reorganize myself, I have to organize myself beforehand, on that day I cannot teach my class, even if it is an online class, I will have to anticipate my class! When I was working, for instance, I had to assign someone else to take my place [...] I was married, on paper and everything, of course that was not all, but one of the issues of my divorce also was related to my father’s illness, because it changes your life, and your marriage changes too! From then on, the attrition started, because of course I had to go, I had to stay there, and as he didn’t accept it, we started having a lot of attrition, and from then on, we were having fights. I came to a conclusion, in fact, we came to a conclusion that it was better to move away and get a divorce, because I wouldn’t abandon my father, I have an obligation towards him, so, yes, it brings consequences with it, for sure! You have to change many things in your life, you have to realize what is priority, and my priority is to take care of my father, to take care of the sick person, the other things will simply have to wait.” (Ana, daughter).

“I’ve changed my work schedule, I had to leave work for hours to accompany a family member and had to make up for the work hours, and I’ve changed shifts with my colleagues. Besides the fact that my husband and son ended up being left on the side, because you have an extra concern, they understand why I am dedicating myself to a person who needs me more at this time, you become more dedicated to someone else, because they need you more.” (Jane, daughter).

DISCUSSION

In the participants’ experience, moral distress consists of several elements associated with the course of the illness of their family member and in their current daily practice of providing care. Among the elements, there are the uncertainties and changes in caregivers’ daily lives that first become present with the diagnosis of the cancer and stimulate the participants to try to figure out how their lives will be, without having any real perspective. The changes in caregivers’ daily lives, which occurred at this point, were associated with concerns such as offering the best care and providing continuous support. It is unknown at this early time after diagnosis how long the patient will remain with them. However, at this point, their pre-existing ethical values may begin to be challenged, raising one more issue to deal with (Ullrich et al., 2020).

In the context of a crisis situation, eventually, the responsibility for providing care will be directed to the closest family member. The mobilization for care can be triggered primarily by matters of moral obligation (Espíndola et al., 2022). After the diagnosis, the major challenge for the family of the sick person involves the need to undertake, at some point, the role of caregiver, which can be a demanding, stressful, and transformative endeavour (Ullgren et al., 2018). A cancer diagnosis is considered a potentially traumatic event for both the sick person and the family caregivers (Opsomer et al., 2020), even in light of an initial expectation of a long survival time. Many family members may experience debilitating psychological symptoms even immediately following diagnosis (Ting et al., 2019).

To offer the best care to the patient, the family caregivers, while dedicating their time to the patient, may be unaware of what to expect from the clinical situation. For this reason, with every new event, they need to redefine their judgment, which will guide their actions. In this sense, moral distress emerges because caregivers are vulnerable to uncertainty. They may not know whether their choices and actions are really effective for the care of the sick family member. Consequently, there can be a negative psychological response to a perceived inability to act in the interests of all those involved, in addition to uncertainty regarding which interests should be prioritized (Morley et al., 2019).

With breakthroughs in diagnosis and treatment in oncology, and the introduction of palliative care at the start of the therapy, when needed, cancer patients are now surviving longer. The length of care may extend from days or weeks to months or years. This development in the field of cancer care means that family caregivers now face new responsibilities in the medical, emotional, and practical domains for longer periods (Ullgren et al., 2018). Although emotional distress is experienced by family members, it is common for family caregivers to not seek medical assistance for themselves (Opsomer et al., 2020). Pattison et al. (2020) describe that caregivers are at risk for several problems related to their role, such as burnout, compassion fatigue, and moral distress. Therefore, it is important for healthcare providers to be aware of the individual caregiver’s well-being, to recognize that their routine impacts the care they provide, and to encourage the development of coping strategies that aim to promote the balance within themselves and their roles.

The emotional repercussions of the illness in the caregivers’ lives emerged in their statements as a founding element of moral distress. When providing care, the participants face challenges or obstacles that mobilize their feelings, such as the inability to deal with the emotions expressed by the patient, or to manage the signs and symptoms inherent with the clinical progression of the disease and the treatments employed. Some mental illness can appear, such as depression and anxiety. This is corroborated in a research study developed in Iran that aimed to explore the same symptoms beyond caregiving burden with a focus on the patient and caregiver-related factors among cancer family caregivers and resulted in high levels of those symptoms (Karimi Moghaddam et al., 2023).

The sensations and feelings experienced by a caregiver can be intensified further when the patient has a child-parent relationship with the caregiver. As far as human development is concerned, the experience of a child being ill with cancer has a cultural impact associated with it (Neris & Nascimento, 2021). Exposure to traumatic events, such as cancer, can manifest in mental suffering, which can extend to other family members when the family dynamics change. This change in family dynamics can trigger conflicts and distance among the family members resulting in a deleterious outcome, because of the disease and its treatment (Souza et al., 2022).

The process of long-term caregiving can be both physically and psychologically demanding, especially when it involves patients with advanced cancer in palliative care (McCauley et al., 2021). Evidence in the literature (Chua et al., 2020) indicates that the caregiver’s level of burden may be increased over time, due to the patient’s unmet needs and changing disease status. Furthermore, the challenges that caregivers experience are closely related to the patient’s well-being. Caregivers’ unsolved problems or unmet needs not only affect their own well-being and quality of life, but also affect the health outcomes of the patient. In contrast, the patients’ health status may improve in relation to the caregivers’ experience, confidence, and ability to provide quality care (Chua et al., 2020).

There are at least two parties involved in the caregiving process, the caregiver and the patient. By being recognized as a care unit, the parties involved experience the illness together. As previously mentioned, cancer and its treatments lead the patients to be concerned with the course of the disease in their bodies, while caregivers are concerned with the well-being of the diagnosed person. However, while providing care and social support, they may be forced to make decisions that lead to moral distress, as they are faced with dilemmas inherent to their experiences with this illness (Butow et al., 2022).

The last marker of moral distress for these study participants was the transformation in their daily lives. When they undertake this caregiving role, they lose themselves and their needs, and place the needs of the sick person in first place. There are also changes in routines, whether at work or in their social relationships. From a cultural perspective, considering the moral values that are the behavioural guide for humanity, it is socially recognized that it is inherent to the nature of human beings to display sensitivity when experiencing the suffering of others. This mobilizes them to provide support in the face of the situation.

In a study conducted with family caregivers of men with prostate cancer (Owoo et al., 2022), several challenges faced by caregivers during the illness of their family members were identified that are similar to the challenges identified in this study. Among them, the changes in the caregiver’s daily life were also potential causes of moral distress: financial restrictions, lack of structure for their accommodation, ineffective bond with the healthcare team, and poor communication. A similar finding was reported in a study with women in Uganda. Scheel et al. (2019) described how, in Ugandan culture, it is common for women to dedicate themselves more often to providing care to their relatives than to themselves, a behaviour defined as family obligation stress. This self-dedication to someone else was understood by the authors as a risk factor or obstacle for seeking personal healthcare, and family involvement is recommended as an effective care strategy. This behavioural response, characterized as cultural, found in the experience of Ugandan women, is similar to the experience of Brazilian caregivers in the present study. Thus, another factor that can impact the behaviours adopted during the illness caregiving process is the cultural influence on the caregivers. Therefore, the authors recommend that nurses should pay close attention to the caregiver’s needs in order to mitigate the caregiver’s experience with the illness.

This work has pointed out that the ethical dilemmas experienced by family caregivers are related to recognizing oneself as being capable of providing care to someone else, to understanding that such dedication will last for an undetermined length of time, and to believing that there is still no possibility of quitting. All of these are aspects that are supported by established social relations, which are culturally appreciated. Moral distress can be presented as living through these uncertainties.

For the present study, it is understood that the participants, before the illness of their family member with cancer, had already been providing care. This was inherent in their family relationship, but the demands were specific and did not completely affect their daily lives. However, after the diagnosis of the disease, the family members undertake the role of caregiver completely, that is, they adopt a caregiver identity that goes beyond the social roles they previously performed (e.g., father, son, daughter, sister, and wife). They do it as an obligation, as if they had no choice about not doing it. By undertaking the identity in question in a full-time manner, the caregivers are exposed to stressful factors, as they begin to experience the uncertainties related to the diagnosis that have repercussions in the ways they experience their emotions, in the provision of care that transforms their daily lives, on doing things that they are not sure how helpful they will be. All this could result in moral distress. The moral distress is the product of their experiences facing moral dilemmas, present in their relations and related to providing care to someone else. This care becomes continuous due to the emotional bonds constructed, even if it causes negative repercussions.

Limitations

The limitations of the present study are related to the participants’ difficulties regarding the use of web conference technology, which contributed to some individuals declining to participate in this study. It should be noted that this limitation occurred because, during the COVID-19 pandemic, face-to-face interviews were not recommended, especially for people with chronic diseases because of the increased susceptibility to Sars-Cov-2 infection. To address this limitation, the researchers sought to obtain in-depth reports from the participants. The study was also limited in relation to its cultural findings. Since Brazil is a continental-sized country, it is not possible to state that the participants’ actions and behaviours reflect a so-called Brazilian culture. It is rather a local-regional culture of which the family caregivers are a part.

CONCLUSION

The illness of a family member with cancer in palliative care can demand from family members that they become caregivers. This role is then performed integrally due to the moral obligation of affective obligation and kinship responsibility, which has been culturally constructed by their social groups. This situation impacts them at the moment of the diagnosis, causes emotional repercussions, and imposes changes on their routines. When experiencing the role of a caregiver, they are faced with dilemmas and uncertainties that can lead to moral distress. Suffering may well become a constant in their lives until the outcome of the disease. Given this is a topic that has not been studied extensively, future research needs to be undertaken with larger sample sizes and different cultural groups. Clinically, nurses ought to be alert to the needs of the family caregivers.

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