Navigating the emotional landscape: exploring caregivers’ journey alongside breast cancer survivors with chronic pain

Abstract

Purpose

Caregiving is a crucial but frequently overlooked part of cancer care, as well as the main emotions experienced by caregivers during that journey. This qualitative study aimed to explore the emotional landscape of informal caregivers in supporting breast cancer survivors (BCs) living with chronic pain (CP).

Methods

We conducted 3 focus groups with informal caregivers of BCs with CP. For the sentiment analysis, we used R Software and the NRC Emotion Lexicon following Plutchik’s theoretical framework of emotions. The emotion spectrum was visualized using the “PyPlutchik” package in Python.

Results

Caregivers (M_age = 43.17, SD = 10.97) predominantly experienced negative emotions (n = 65; M = 0.06, SD = 0.25) compared to positive ones (n = 37; M = 0.10, SD = 0.31), with sadness (n = 46), fear (n = 43), and disgust (n = 37) being most common, alongside feelings of remorse (n = 37), despair (n = 41), and shame (n = 37). The COVID-19 pandemic, as reported by caregivers, also intensified feelings of shame, frozenness, and ambivalence. Despite more frequent negative sentiments, trust (n = 53) and hope (n = 24) were consistently expressed, indicating a complex emotional landscape where positive and negative feelings coexist.

Discussion

This study identifies the broad spectrum of emotions experienced by caregivers in the context of BCs with CP, ranging from individualistic feelings (e.g., fear, despair) to social emotions (e.g., shame, frozenness), and even includes instances of positive emotions (e.g., trust, hope). While our study highlights the emotional toll on caregivers, we suggest that future research and interventions focus more on providing effective support frameworks to manage these emotional challenges. Any discussion regarding the specific impacts of these emotional experiences on clinical outcomes (e.g., quality of life, fear of cancer recurrence) should be approached with caution.

Supplementary Information

The online version contains supplementary material available at 10.1007/s00520-024-09064-3.

Introduction

Caregiving is a crucial but frequently overlooked part of cancer care, and it places expectations on those who take on this role [1, 2]. Despite often feeling unprepared for this demanding role, informal caregivers—whether as romantic partners, family members, or close friends—provide cancer patients with crucial support [2, 3]. Beyond providing physical and emotional support, caregivers are fundamentally involved in managing healthcare transitions (e.g., moving from hospital to home or specialist to primary care) and facilitating communication processes [2]. Inadequately managed transitions can lead to adverse health outcomes, including symptom exacerbation, increased risks of complications, and higher readmission rates [4]. Additionally, caregivers undertake key communication tasks such as adhering to patient preferences for information sharing and effectively managing complex family dynamics during medical consultations. These tasks often involve mediating conflicting treatment preferences and handling challenging behaviors from family members [2].

The Systematic Transactional Model (STM) [5, 6] suggests that disease is a shared difficulty within the family system that can lead to transformative or disruptive processes rather than just an individual’s burden. The patient and caregiver are intertwined in managing adjustment and stress, with the intrapersonal resources of one partner impacting the other. While some empirical studies [7–9] suggest that providing care may lead to higher levels of distress, burden, and marital dissatisfaction, others [10–12] suggest that providing care may also present opportunities for growth and resilience and enhanced family functioning through stronger emotional bonds. The reciprocity of this role establishes caregivers as “second-order patients” with their own care needs and who are influenced by the patient’s suffering [13].

Given the intertwined nature of the patient-caregiver relationship as described by the STM, the effectiveness of their coping strategies—how they perceive and manage CP together—directly influences their quality of life (QoL) and the overall pain experience [10]. The evidence indicates that the pain that patients experience has a major effect on the emotional distress of caregivers [14]. Caregivers face increased burdens from tasks such as monitoring pain, administering medications, and managing side effects. These demanding responsibilities often lead to significant emotional stress and psychological discomfort, as evidenced by reports of depression and anxiety among caregivers [8, 15]. Furthermore, dependence and financial concerns are risk factors for emotional burden, while self-efficacy, social support accessibility, and pain management knowledge serve as protective factors [10, 12, 16–19]. The closeness of the caregiver-patient relationship can also influence emotional burden, varying as either a risk or protective factor [12].

Hence, CP impairs the patients’ and caregivers’ QoL [10]. Caregivers of cancer patients deal with a variety of physical, psychological, and social health deficits in addition to the adjustment to stress. For instance, the research by West et al. [20] has shed light on the adjustments made by family systems when faced with CP. These adjustments cover a range of difficulties, like family losses (affecting finances and social ties), life transitions (balancing work and caregiving), and concerns about coping with the condition’s future implications.

Not only that, all the changes in the family system and the overload of the tasks demanded bring an emotional toll due to mostly the feeling of being unprepared. Caregivers may struggle with feelings of blame and guilt for not being ready or helpful enough or may show fear and worry about the uncertainty surrounding CP [14, 20, 21]. These emotional weights frequently appear in the form of depression, anxiety, frustration or irritability, grief (for losing or the possibility of losing a loved one), anxiety, and a sense of helplessness [14, 21–24]. A recent systematic review and meta-analysis [9] confirmed and synthesized the main emotional commitment of caregiving, which existential distress may be represented by 18% for hopelessness, 13.9% of demoralization, 57% for fear of death, 24% for pre-loss grief, or 36% for a sense of not being emotionally prepared and 35% of loneliness.

The emotional toll on caregivers, stemming from their caregiving responsibilities, is substantial. Yet, there is still a dearth of research on recognizing and managing the emotions experienced by caregivers within the context of cancer pain. As important as caregivers are in providing care for people with cancer, it is equally important to understand better the emotional overload caregivers go through.

Aims

The study aimed to analyze the verbal patterns representing emotional experiences expressed by caregivers. Our goal was to reveal the basic and complex emotions about the caregiving experiences in supporting breast cancer survivors (BCs) living with CP.

Methods

Study design and recruitment

The study employed focus groups to delve into the emotions of caregivers supporting BCs with CP. Due to COVID-19 constraints, discussions were conducted via Zoom video calls. Guidelines outlined by Krueger and Casey [25] were adhered to for adapting to online settings [26]. Participants without psychiatric or neurological conditions were eligible, and those who declined participation were excluded. The final sample comprised 13 caregivers (M_age = 43.17, SD = 10.97), with two recruited individuals not participating on the scheduled day without explanation. Caregivers in the study consisted of family members (mostly husbands, n = 8, 62%) and friends of BCs with CP. Participants were recruited using a convenience sampling approach based on caregiver contacts provided by patients enrolled in the previous study [27], which included a final sample of 17 BCs with CP from the European Institute of Oncology (IEO) Breast Unit. Caregivers were those associated with these patients. This study represents the second phase of our research, focusing specifically on caregivers and exploring a separate cohort of participants, as the previous study involved only female patients. Ethical approval was obtained from the Ethics Committee of IEO (ID: R1508/21-IEO1594). The research was conducted in accordance with the Declaration of Helsinki.

Procedure

Each participant provided informed consent through digital and hand-written signatures before participation. The enrolled participants were grouped into three focus groups, each consisting of 4 or 5 participants. The duration of the focus groups ranged from approximately 60–90 min. Two female psychologist-researchers (CF, ST), experienced in conducting focus groups, facilitated the discussions. There were no pre-existing relationships between the moderators and the participants. After a brief introduction to the research focus and initial self-presentations by the participants, a series of core questions was introduced, aligned with the guiding themes. See Table 1.

Table 1.

Core questions aligned with guiding themes presented to participants

Core questions	Guiding themes
1. Thinking about yourself and your daily life, what difficulties do you face in managing the pain of the person you care for, or what barriers do you perceive hinder effective pain management?	Barriers in cancer pain management
2. When assisting the person you care for, what are your needs regarding the care and its management?	Needs in cancer pain management
3. Have you discussed the treatment preferences of the person you care for with the doctor, other caregivers, or anyone significant to you?	Involvement in the cancer treatment decision-making process
4. Which treatment would you prefer to pursue for managing the pain of the person you care for?	Treatment preferences in cancer pain management

The focus groups were fully audio-recorded, and the first author transcribed them verbatim, ensuring the removal of all identifiable information. The decision on the number of focus groups aligned with the literature’s guidance [28] and aimed to reach data saturation, with no new themes emerging by the conclusion of the three sessions. Field notes were taken throughout the discussions and were not returned to participants. The COREQ checklist for reporting qualitative research was followed [29].

Data analysis

The statistical analysis was conducted using R Studio version 4.1.2 (2021–11-01) [30]. The “Syuzhet” R package [31] was employed to analyze caregiver transcripts. Emotion and sentiment analysis utilized the “get_nrc_sentiment” function, which considers eight basic emotions and two sentiments, relying on the NRC Emotion Lexicon [32, 33]. This lexicon comprises a list of words, each associated with basic emotions (anger, fear, anticipation, trust, surprise, sadness, joy, and disgust) and sentiments (positive and negative), aligning with Plutchik’s wheel of emotions [34].

The NRC lexicon, through the “get_nrc_sentiment” function, matched words in the data with those in the lexicon, revealing their associated emotions and sentiments. The presence of an association is denoted by “0” or “1,” where “0” indicates no association, and “1” confirms an association. A word may be linked to multiple emotions and possess positive, negative, or neutral polarity. For instance, words conveying anger, fear, disgust, and sadness are predominantly associated with negative sentiment, while words expressing anticipation, joy, and trust are primarily tied to positive sentiment. Additionally, surprise words may exhibit positive or negative polarity, reflecting both orientations. Table 2 presents ten example words from our dataset, demonstrating their codification into the eight basic emotions in the lexicon.

Table 2.

A snapshot from the data: analysis of 10 words using the NRC lexicon

Words	Words’ frequency	Emotions
Male (Badly)*	n = 26	Anger:0	Anticipation:0	Disgust:0	Fear:0	Joy:0	Negative:1	Positive:0	Sadness:1	Surprise:0	Trust:0
Dolore (Ache)	n = 22	Anger:0	Anticipation:0	Disgust:0	Fear:0	Joy:0	Negative:1	Positive:0	Sadness:1	Surprise:0	Trust:0
Supporto (Supporting)	n = 22	Anger:0	Anticipation:0	Disgust:0	Fear:0	Joy:0	Negative:0	Positive:1	Sadness:0	Surprise:0	Trust:1
Insieme (Ensemble)	n = 17	Anger:0	Anticipation:0	Disgust:0	Fear:0	Joy:0	Negative:0	Positive:1	Sadness:0	Surprise:0	Trust:1
Malattia (Illness)	n = 16	Anger:0	Anticipation:0	Disgust:0	Fear:1	Joy:0	Negative:1	Positive:0	Sadness:1	Surprise:0	Trust:0
Bisognoso (Needy)	n = 12	Anger:0	Anticipation:0	Disgust:0	Fear:0	Joy:0	Negative:1	Positive:0	Sadness:0	Surprise:0	Trust:0
Intervento (Intervention)	n = 12	Anger:0	Anticipation:0	Disgust:0	Fear:0	Joy:0	Negative:1	Positive:1	Sadness:1	Surprise:0	Trust:0
Rabbia (Anger)	n = 10	Anger:1	Anticipation:0	Disgust:0	Fear:0	Joy:0	Negative:1	Positive:0	Sadness:0	Surprise:0	Trust:0
Paura (Fear)	n = 9	Anger:1	Anticipation:0	Disgust:0	Fear:1	Joy:0	Negative:1	Positive:0	Sadness:0	Surprise:0	Trust:0
Gestione (Management)	n = 9	Anger:0	Anticipation:0	Disgust:0	Fear:0	Joy:0	Negative:0	Positive:1	Sadness:0	Surprise:0	Trust:1

*In () we reported the English words

Themes were identified through a quantitative approach based on sentiment analysis outputs, with the lexicon targeting sentences with the highest intensity of selected emotions. The analysis revealed predominant themes and topics, which were then narratively described using illustrative quotes from caregivers.

Only one coder was directly involved in this process, as the software performed the sentiment analysis. However, the research team subsequently reviewed and discussed the results to ensure consistency and relevance. This approach enabled us to explain each emotion within its contextual relevance.

Participant checking was not conducted; therefore, participants did not provide feedback on the analysis results.

The wheel of emotions by Plutchick

According to Plutchik’s model [34], the eight basic emotions combine to form complex emotions (dyads) when paired with one of the other 7 basic emotions. Plutchik’s visualization of these basic emotions on a wheel provides spatial insight into their relationships, determining primary, secondary, tertiary, or opposite dyads based on their proximity. Building upon this framework, we computed the frequencies of basic emotions to assess co-occurrences and establish primary, secondary, tertiary, and opposite emotion dyads. Specifically, co-occurrence in a sentence was denoted by the presence of each specific emotion associated with another. For instance, fear and anger, being opposites, combine to form the complex emotion of “frozenness.” Thus, if the frequency of fear in a sentence is 2 and anger is 3, the frequency of frozenness would be set to 2.

The total co-occurrences in a sentence were calculated to represent the frequency of a specific dyad. The wheel was visualized using Python 3.10.5 [35] and the “PyPlutchik” package, a Python implementation designed for visualizing Plutchik’s wheel of emotions [36]. In each wheel (basic emotions, primary dyads, secondary dyads, tertiary dyads, opposites), the emotion with the highest frequency was set to 1, and scores for other emotions were calculated based on this ratio. Consequently, emotions on the wheel are scaled from 0 to 1, where 1 signifies the most frequently occurring emotion.

Results

Sentiment and emotions analysis

Figure 1 displays the most prevalent basic emotions and sentiments in the caregivers’ verbatim transcripts. The sentences and words were 642 in total and 15,847 in total.

Fig. 1.

Frequencies of caregivers’ sentiments and emotions textually expressed when discussing their experiences in the context of caregiving of breast cancer and chronic pain. Note. The negative polarity of emotions and sentiments is indicated in red, and the positive ones in green. Both red and green were used for surprise that may be associated with both negative or positive emotions and sentiments. The count represents the total frequency of association between the word and one or more emotions and/or one of two polarities (negative and positive) present in the data body text

The negative sentiment (n = 65; M = 0.06, SD = 0.25) was higher than the positive sentiment (n = 37; M = 0.10, SD = 0.31). Within the negative category, two predominant emotions emerged: sadness (n = 46; M = 0.07; SD = 0.27) and fear (n = 43; M = 0.07, SD = 0.25), followed by disgust (n = 37; M = 0.06, SD = 0.23). Surprise slightly edged out sadness in prevalence, nearly matching trust (n = 48; M = 0.07, SD = 0.28).

Caregivers agreed on the challenges posed by inadequate preparation in managing CP. They often felt incapable of providing the necessary assistance to their loved ones without inadvertently making them feel inadequate within the family dynamic or as a couple. For example, the daughter (caregiver 1, 22 years old) of a 51-year-old-woman with lobular carcinoma in her breast showed the overwhelming emotions she faced while assisting her mother, underlying how this scenario was scary and uncertain when coming from a lack of proper information to deal with such situation. However, she also noted the potential for a positive shift when equipped with trusty information:

“I mean, my mother, for example, once had her drain slightly occluded, and at night, she was full of blood, and at that time, you get scared, but maybe if you get an answer right away, without having to run somewhere, you can calm down enough to say...OK, we can go slowly; there’s nothing deadly right now.”

Among positive emotions, trust (n = 53; M = 0.08, SD = 0.28) and anticipation (n = 35; M = 0.05, SD = 0.23) were the most prevalent, followed by joy (n = 19; M = 0.03, SD = 0.18). For example, caregiver 5 (45 years old, husband) well expressed feelings of trust, anticipation, and joy when describing the experience of a chronic illness. Even if, on the first hand, he compared it to an unexpected atomic bomb explosion, followed by a continuous struggle throughout the day that could divide the couple, disputing the harmony, he noted how this challenge might be an opportunity for newfound strengths together.

“Clearly, this can also change certain dynamics in the couple because it is inevitable…there are times when you say maybe our relationship will be destroyed or maybe it will be strengthened.”

According to the results of lexicon-based analysis, caregivers expressed minimal anger (n = 6; M = 0.01, SD = 0.10). Although the quantitative data indicated limited instances of anger, a qualitative examination of caregivers’ narratives revealed underlying feelings of irritability and frustration. For example, a mother (caregiver 11, 59 years old) of a 27-year-old daughter diagnosed with early-stage breast cancer explicitly voiced anger. This negative feeling was directed toward doctors but more deeply to her feeling frustrated and vulnerable in aiding her daughter, who went through further invasive procedures. She articulated her emotions, describing a distressing scenario:

“She fainted, excruciating pain because the only thing they could tell us: she now has 11 bruises in her ovaries because we took 11 eggs.”

Plutchik’s wheel of emotions

Table 3 displays how often pairs of basic emotions co-occur, representing the complex emotions that form a dyad. Remorse (n = 37), alarm (n = 36), and disappointment (n = 35) were the most frequently represented primary dyads. These complex emotions were well captured by the narrative of a mother’s anger (see the sentence above), which also revealed other connected emotions. She felt compelled to seek remedies (remorse), perceiving something externally wrong (disappointment), and becoming shocked (alarm) by this unprepared event. Following that, the two primary dyads that were similar in frequency were optimism (n = 14) and love (n = 14). The following scenario effectively conveys these two feelings as the caregivers’ need for support and accurate information. Specifically, they voiced the importance of online social groups in aiding and understanding how to manage caregiving responsibilities more effectively.

“But then if I can also add a video call, a call or make a group like today, where in half an hour we take out the things that we’ve written down and that are perhaps more urgent there […].” (Caregiver 5, 45 years old, husband)

Table 3.

The co-occurrence of complex emotions

Dyads		Emotions association	Co-occurrence frequency	Ratio
Primary	Remorse	Disgust + sadness	37	1
	Contempt	Anger + disgust	3	0.081
	Optimism	Anticipation + joy	14	0.378
	Submission	Trust + fear	4	0.108
	Aggressiveness	Anger + anticipation	0	0
	Love	Joy + trust	14	0.378
	Alarm	Fear + surprise	36	0.973
	Disappointment	Sadness + surprise	35	0.946
Secondary	Envy	Anger + sadness	5	0.122
	Despair	Sadness + fear	41	1
	Hope	Anticipation + trust	24	0.585
	Curiosity	Trust + surprise	6	0.146
	Guilt	Joy + fear	1	0.024
	Cynism	Disgust + anticipation	2	0.049
	Pride	Anger + joy	0	0
	Unbelief	Surprise + disgust	35	0.854
Tertiary	Outrage	Anger + surprise	2	0.054
	Shame	Disgust + fear	37	1
	Anxiety	Anticipation + fear	2	0.054
	Sentimentality	Sadness + trust	5	0.135
	Pessimism	Anticipation + sadness	2	0.054
	Delight	Joy + surprise	1	0.027
	Dominance	Anger + trust	1	0.027
	Morbidness	Disgust + joy	1	0.027
Opposite	Frozenness	Fear + anger	5	1
	Confusion	Anticipation + surprise	2	0.40
	Ambivalence	Trust + disgust	4	0.80
	Bittersweetness	Joy + sadness	1	0.20

Regarding the secondary dyads, the two most frequent were despair (n = 41) and unbelief (n = 35), followed by hope (n = 24). In this scenario, the feelings of hopelessness and disbelief were articulated as major emotional triggers brought on by emotional pain within the family structure. However, as demonstrated by one of the sons (caregiver 2, 27 years old), maintaining family unity is crucial when facing such challenges:

“Me, my sister, dad, and the whole family were always united, and yes, I must say that there was physical pain, but the psychological one definitely prevails.”

Shame (n = 37) emerged as the most prevalent tertiary dyad among caregivers, notably during moments when they could not physically or emotionally support patients due to COVID-19 restrictions. They described eHealth tools as double-edged swords: while bridging gaps between patients and doctors, they also risk depersonalizing care. Participants stressed the need to treat patients with respect and dignity, not just as clinical cases.

“I can’t fully express it, but it’s like, you know, trying to offer help just through words on a screen feels so distant. In moments like these, just having someone physically present means a lot. It’s not just about what’s written here; it’s about having someone to lean on, someone real.” (Caregiver 1, 22 years old, daughter)

This inability to connect personally intensified emotions such as frozenness (n = 5) and ambivalence (n = 4), the most frequent opposite pairs observed. The uncertainty surrounding how to provide support from a distance, compounded by the overwhelming sense of helplessness and emotional inadequacy, only exacerbated caregivers’ feelings of immobilization. Additionally, caregivers grappled with ambivalence; while they felt excluded and disheartened by the situation, they recognized the importance of trusting medical professionals to ensure their loved one’s well-being because there was no option. Despite finding some solace in the physical distance, caregivers battled with feelings of guilt and shame, torn between relief and remorse for entertaining such thoughts.

“I believe that this COVID situation has been truly disastrous for certain dynamics because, in the end, you also have a sort of... you want to stay away from certain places a bit because you think they’re all dangerous…So, even more so, everything was very distant, very detached. So, this certainly didn’t help us to participate as we could have done in another historical moment.” (Caregiver 5, 45 years old, husband)

Refer to Fig. 2 to view Plutchik’s wheel of emotions.

Fig. 2.

The wheels of emotions by Plutchik’s model. Note. The eight basic emotions are in the center. Starting from the left and following a counterclockwise turn, 1 represents the primary dyads, 2 represents the secondary dyads, opp. represents the opposite dyads, and 3 represents the tertiary dyads

Discussion

This work delves into the emotional journey of caregivers supporting BCs living with CP. Overall, the negative sentiment outweighed the positive one, encompassing a range from basic individual emotions like sadness, fear, and disgust to more complex ones such as remorse, alarm, disappointment, despair, and unbelief. Additionally, it explores social emotions, including shame and feeling overwhelmed (frozenness). In line with the literature [10, 20, 21], cancer-related CP leads to different adjustments in family dynamics, including a reversal of roles within the family and a loss of connection both within the family unit and in the broader social network. This often leads to significant uncertainty, concern about the future, and huge existential distress [9].

Uncertainty is a common experience shared by cancer patients and caregivers as well, which is often connected with the fear of recurrence [37], anticipating grief, and increasing the burden of caregiving [21, 38]. A 45-year-old husband (caregiver 5) well expressed these feelings:

“Many fears come crashing down on you. Why, when, and maybe not will it end?... This stuff devastates you because you don’t know how to help this person except for being beside them and maybe even acting as a lightning rod in certain situations.”

Caregivers navigate feelings of blame and guilt for lack of preparation in uncertain circumstances that cause them to feel they did something wrong for their loved ones [14, 21, 39]. Our study also found that these experiences elicited deep emotions such as remorse, prompting empathetic concern toward loved ones for the actions caregivers did not take.

Our findings indicate that the feeling of shame, frozenness, and ambivalence seems to be exacerbated by the COVID-19 pandemic. Caregivers often feel ashamed of perceived shortcomings in their supportive role and experience feelings of ambivalence and being frozen. They frequently attribute these challenges to external factors, such as pandemic restrictions or potential inadequacies in eHealth tools, which they perceive as poor substitutes for in-person medical care. Shame (“I am inadequate in providing help”), distinct from guilt (“I did something wrong”), stems from feelings of external judgment that may arise due to the group interaction and a deep-seated belief in personal inadequacy, prompting defensive responses and emotional withdrawal [40]. It has been demonstrated to be another not well-managed emotion that could increase the burden perceived by caregivers [41–43].

A related study conducted during the pandemic [44] highlighted the intensified struggles faced by caregivers, particularly in managing pain and coping with prevalent emotions such as hopelessness and uncertainty. The pandemic-imposed caregiving restrictions, which limited access to hospitals, heightened the fear among caregivers that they might not have the opportunity to bid farewell or see their family members again. This fear often led to intensified anticipatory grief. The authors also noted that disruptions in clinical routines and reduced social interactions due to these restrictions further aggravated feelings of loneliness. Moreover, witnessing the suffering of loved ones without being able to provide relief not only increased feelings of isolation but also contributed to a sense of social alienation [8].

However, despite higher negative sentiments, caregivers consistently expressed the highest level of trust in their relationships with their partners and/or doctors. We found a similar result in our previous study [21], in which caregivers often find themselves in the role of supporters, tasked with maintaining an optimistic mindset for themselves and their loved ones. Caregivers found that the challenge of managing CP might be an opportunity to create new synergies with a loved one following STM [5, 6]. Interestingly, when trust aligns with anticipation, it fosters a sense of hope, another positive resource in times of crisis. This sense of hope could be encouraged when caregivers perceived the family as united and shared the experience with similar others. The focus group conversation was an example of this experience, highlighting how joining a support group of people with similar experiences can lower stress and enhance QoL, as previously demonstrated [21, 45, 46]. Conversely, when trust coincides with feelings of disgust, it often leads to feeling ambivalent, which emerges as a prevalent emotional trigger among caregivers. It has been demonstrated that ambivalence over emotional expression (i.e., feeling not being able to open up about your emotional struggle because expression of needs can be seen as a sign of weakness) increased caregiving burden and depressive symptoms and decreased caregiver self-efficacy [47].

Overall, it is crucial to recognize the profound emotional journey experienced by caregivers and the impact it has on both their well-being and the one of the patients they support. Tailoring interventions to address the specific emotional needs of caregivers is essential for enhancing overall patient care and the QoL of both. According to our previous study [21], uncertainty and related fears (e.g., interpreting each signal as a warning sign of a recurrence) are common experiences between patients and caregivers. A recent systematic review [48] shows that interventions to manage uncertainty involve various components, with informational support playing a pivotal role. Education deficiency stands out as one of the most prevalent obstacles to effective pain management, impacting patients, caregivers, and healthcare providers. While eHealth tools offer potential support [49–51], they should not replace the doctor-patient relationship, as emphasized by caregivers in our study. When some caregivers presented it to break the barrier from recovery to home-care transition and facilitate the monitoring when you are far away from the institution, all agreed that such a tool could be useful. In addition to the educational section, addressing a specific outcome, such as the fear of cancer recurrence in family caregivers through group interactions, has shown promise in fostering understanding, trust, and improved communication with partners, thereby reducing uncertainty [37]. However, further efficacy testing is needed in this regard.

In conclusion, this study highlights the complex emotional landscape that caregivers of BCs with CP navigate, marked predominantly by negative emotions such as sadness, fear, and disgust, alongside deep feelings of remorse, despair, and shame. However, the presence of trust as a significant positive emotion also suggests a potential source of resilience and hope, providing caregivers with emotional support amid the challenges they face. Our findings emphasize the urgent need to recognize and address these emotional burdens, which significantly impact caregivers’ mental health and, consequently, the quality of care they provide. While trust serves as a critical resource in managing caregiving challenges, future research and clinical practice should adopt a holistic, dyadic approach that includes both patients and caregivers. Addressing these shared experiences, particularly the fear of cancer recurrence and the associated uncertainty, can foster stronger, more resilient coping strategies for both parties and enhance the support systems available to them.

Studies such as those by Pietromonaco and Collins [52] and Lamarche et al. [37] demonstrate the promise of interventions that support both interpersonal and intrapersonal aspects of coping with cancer-related stress. Tailored interventions—such as family-based and virtual group therapies—can promote psychological well-being by reducing the fear of cancer recurrence, enhancing hope, and building emotional resilience. By integrating these approaches, future pain management strategies can improve patient outcomes and caregiver well-being, addressing the interconnected nature of their experiences.

This research underscores that ignoring the emotional needs of caregivers risks undermining the effectiveness of home-based cancer care. Emotional support and psycho-social interventions for caregivers should thus be seen as integral to the standard of care in oncology, with the potential to improve the overall QoL for both patients and their loved ones.

Limitations

While this study offers valuable insights, it is important to acknowledge certain limitations. While NLP provides advantages in capturing and analyzing textual data, it may not fully capture the intricate nuances of human emotions. Moreover, distinguishing between basic and complex emotions may not always be straightforward, as complex emotions are often conveyed implicitly rather than explicitly. For example, despite its outward intensity, anger can be challenging to quantify using quantitative methods alone. To address these challenges, we employed a qualitative approach to narratively describe participants’ experiences within their contextual framework, aiming to provide a more comprehensive understanding of their emotional journey.

Supplementary Information

Below is the link to the electronic supplementary material.

Author Contribution

CF, MM, and GP contributed to the study's conception and design. CF performed material preparation, data collection, and analysis. CF and ST guided the focus group discussions. MC contributed to the analysis part and contributed to the figures' preparation. CF performed the first manuscript draft, including figures and tables. GP supervised all the work. All authors reviewed and approved the final manuscript.

Data Availability

No datasets were generated or analysed during the current study.

Declarations

Conflicts of interest

The authors declare no competing interests.