The meaning of trust along the treatment pathway of women with breast cancer: a mixed-methods study among cancer survivors

Abstract

Purpose

Women with breast cancer face a high degree of uncertainty. Trust between health providers and patients has been shown to improve patient quality of life and may enhance clinical outcomes. This study aimed to explore the meaning of trust along the treatment pathway.

Methods

The study followed a convergent mixed-methods design. We collected qualitative data longitudinally from diagnosis to follow-up using unstructured digital diaries and 45 semi-structured interviews with twelve women with breast cancer. To measure symptom burden and trust, we collected quantitative data by means of 57 questionnaires. Data analysis was based on phenomenology according to van Manen and on descriptive statistics. Data synthesis resulted in a conceptual model of trust.

Results

The women experienced trust as a dynamic phenomenon within the biomedical cancer care “machinery”. Their trust was strongly influenced by contextual factors, professionals’ expertise, and person-centeredness. The relevance of trust differed according to treatment phases.

Conclusions

Due to a high degree of uncertainty, trust was particularly important. Professionals positively influenced the women’s trust to a certain extent through a patient-centered approach and by demonstrating expertise within the biomedical cancer care “machinery”. The conceptual model of trust should receive attention to bring care closer to the women’s lived experience so that their care experience can be improved.

Introduction

The diagnosis of breast cancer and its trajectory leads to a high degree of uncertainty in the everyday life of affected women [1,2,3,4]. Breast cancer presents an existential threat and can be associated with severe decline of women’s health [5]. Not only are women faced with a potentially life-limiting diagnosis, they must also confront their own femininity, sexuality and fertility in the light of this condition [6]. Moreover, breast cancer can strongly impact women’s roles as mothers, partners, daughters, employees, etc. It increases uncertainty about their future and their ability to perform their previous roles [7, 8].Ongoing fears of recurrence can amplify psychosocial issues, such as anxiety and feelings of hopelessness [9, 10]. Patients can therefore benefit from continuous support, among others from health professionals such as advanced practice nurses (APN) accompanying women over the entire treatment pathway to meet their psychological and physical needs. This is important not only during treatment but especially in the years following completion of first-line therapy [11].

Over the past decades, the relationship between patients and their health professionals has remained an area of great interest. Trust has long been recognized as an important part of this relationship [12] and is therefore essential for high-quality healthcare [13]. Trusting healthcare providers may improve patients’ experience throughout the illness trajectory [14] and lead to favorable clinical outcomes [15]. Trust may play an even greater role for patients with cancer due to the potentially life-threatening nature of this disease [16].

Trust can be defined as a future-related phenomenon that becomes relevant in a situation of risk. An element of risk is present when the benefit of trusting may be outweighed by the damage of misplaced trust. Therefore, trust bridges a moment of uncertainty in another party’s behavior. Thus, trust is essential for cooperation [17]. The trustee (the patient) judges that the trustor (the object of trust) has the best interests at heart and will act or behave in their favor [18]. Trust is shaped by past positive experiences in similar situations [19]. To trust entails an element of optimism in a moment of vulnerability [20]. It is not static but may change over the course of a relationship [19].

From the professionals’ point of view, trusting relationships are an important requirement for high-quality health care provision [21], as well as for interprofessional and interorganizational collaboration [22]. This is relevant in so far as the treatment of breast cancer is known to be complex. It highlights the importance of interprofessional collaboration in this setting [23]. In comparison, patients have been found to report fewer symptoms, better quality of life and greater satisfaction with treatment when they had more trust in their healthcare professional [14, 20, 24].

In the oncological context, a growing body of literature has explored patients’ trust in their health professionals, especially in physicians [16, 25, 26]. However, the illness experience is shaped not only by a single health profession but by the entire treatment team across multiple organizations [27].

It remains unclear, how the interorganizational and interprofessional context of breast cancer treatment influences trust within the patient-provider relationship from the patient’s perspective. Therefore, the primary objective of this study was to explore the meaning of trust along the treatment pathway of women with breast cancer. This study is part of a larger research project that aimed to not only examine the meaning of trust but also to shed light on interprofessional collaboration and the role of the Advanced Practice Nurse Gynaecological Oncology (APN GO). However, the latter two aspects are beyond the scope of this paper.

Method

Design

The study utilized a longitudinal mixed-methods convergent approach (Fig. 1) drawing on both the phenomenological as well as the positivist tradition. This approach was chosen due to the complexity of the phenomenon of trust and the treatment pathway for women with breast cancer. We collected and merged qualitative and quantitative data along the treatment pathway from diagnosis to follow-up [28]. Qualitative data of the participating women were collected through digital diaries via the mobile messenger service “Threema” and individual interviews. The collection of women’s quantitative data occurred during their treatment with standardized questionnaires. Merging of qualitative data (digital diaries, interviews) and quantitative data (questionnaires) took place throughout the data collection period. For example, prior to each interview, the most recent questionnaire data allowed us to identify women’s concerns and trust issues almost in real time. This was particularly helpful to prepare for each qualitative interview.

Fig. 1

Study design

Participants and recruitment

We aimed to recruit N = 12 women in two gynecological/breast centers in two Swiss language regions: The Cantonal Hospital of Lucerne (gynecological/breast center/German-speaking part of Switzerland) and the Valais Hospital (breast center/French-speaking part of Switzerland). The participants had to be (1) at least 18 years old, (2) newly diagnosed with gynecological cancer (initial diagnosis of breast, cervical, ovarian, endometrial, vulvar, or vaginal cancer), (3) treated within one of the collaborating centers, (4) fluent in German, English or French, and (4) familiar with the use of a tablet or another mobile device. We planned to include a heterogeneous sample of women in the study, including women with different gynecological cancers. However, it was only possible to recruit women with breast cancer due to various reasons such as high burden among women with other gynecological cancers.

Eligible women were informed about the study by the Advanced Practice Nurse Gynecological Oncology (APN-GO) at each collaborating center. All participants had already been presented to the tumor board. Each woman willing to participate received a pre-installed tablet to use as a digital diary. The APN-GO introduced the women to the digital diary and informed them that they would receive a phone call from the research team explaining the next steps in due course. In case of dropouts, we planned to recruit a substitute. This was not necessary as all participants completed the study.

To gain a deeper understanding of how trust evolves between the different stakeholders, we also interviewed N = 5 health providers experienced in treating women with breast cancer: an oncologist, a psycho-oncologist, an outpatient oncology nurse, a breast care nurse, and a radiologist. The providers were purposively selected to enrich the data collected from the 12 women and were relevant for validation purposes (see the Quality assurance section).

Data collection and procedures

Data were collected from July 2021 to March 2023 (participants) and from February to August 2023 (health providers). The APN-GO informed the research team as soon as a woman had agreed to participate in the study. Each participant was assigned to a research team member who was primarily responsible for her during the study. We defined direct contact persons from the research team to ensure that the participants felt comfortable about sharing personal information with a team member they had become familiar with over several months. The responsible team member contacted the woman via phone and welcomed her to the study. Any questions about the nature of the study were answered and the woman was encouraged to report her experiences via the mobile messenger service.

Digital diary

The messenger service “Threema” was already preinstalled on each tablet. One of the main reasons for selecting the digital diary method for primary data collection was its particular usefulness to explore the women’s lived experiences in the context of healthcare [29]. Participants were able to share their day-to-day experiences through messages, audio recordings or photos almost in real time. This contributed to reducing the risk of recall bias. Contrary to traditional hand-written diaries, the research team also engaged with participants via the messenger service, responded to their entries in an acknowledging, yet respectful manner. Research team members at times also sent prompts to enquire on certain experiences in more detail. This form of interaction and data collection should allow the generation of rich data. Further details on this data collection method and on our approach (e.g., practical aspects, data security, data quality) have been provided elsewhere [30].

Semi-structured interviews

In addition to the digital diary, we conducted a semi-structured interview over the telephone with each woman at each stage of her individual treatment pathway (e.g., diagnosis, chemotherapy, surgery, radiation, and follow-up after the first-line treatment had ended; see Fig. 1). The interviews lasted from 16 to 59 min, with a mean of 41 min per interview. The research team member primarily responsible for the participant conducted the interview. If possible, a second member of the research team was present. The developed interview guide (see Supplementary Material 1) was continuously adapted based on preceding data. This included the elaboration of statements noted via the mobile messenger service [31]. The main topics discussed in the guide were the perception of trust, collaboration of health professionals and experiences with the APN-GO.

Online survey

Each participant completed an online survey at the end of each treatment phase directly before the interview (see Fig. 1). The participants received the link to the survey via the messenger service together with a unique identifier code. The survey was designed using the Software “Unipark” (Tivian). The repeated administration of the survey allowed us to longitudinally assess changes in the participants’ responses over time and to compare the survey responses with qualitative data collected around the same time. Importantly, the questionnaire provided us with information we could elaborate on during the subsequent interviews – in addition to digital diary entries.

The survey entailed two primary aspects that were assessed: “trust” and “health-related quality of life”. We chose these aspects based on previous study findings that have linked higher levels of trust in health professionals with lower symptom burden and improved quality of life [14, 20, 24]. In addition, it comprised demographic and personal data that could not be derived from the patient chart. To assess trust, we used scales of the “Cologne Patient Questionnaire”. Trust in physicians and nurses was measured with the 5-item scale “Trust in the health care providers” with five questions on 4-point Likert scales (1=“do not agree” to 4=“agree completely”) [20]. The five questions were asked twice, once for trust in physicians and once for trust in nurses. To assess trust in the organization, four questions on 5-item scales were used from the “Cologne Patient Questionnaire”. The scales have been considered sufficiently valid within the “Cologne patient satisfaction study” [32]. It has proven to be feasible and reliable [33]. By considering trust in the organization as well as in nurses and physicians separately, we hoped to gain insights into how distinct trust dynamics within each professional group contribute to effective interprofessional collaboration, reveal potential differences in team trust, and identify specific factors that strengthen or hinder collaborative practices.

We measured health-related quality of life with the “European Organization for Research and Treatment of Cancer Quality of Life Questionnaire” (EORTC QLQ-C30). The QLQ-C30 consists of 30 items covering five subscales related to different functions (physical, role, emotional, cognitive and social, scored on 1 = not at all to 4 = very much), nine subscales/items on symptoms (fatigue, nausea/vomiting, pain, dyspnea, insomnia, appetite loss, constipation, diarrhea and financial difficulties, scored on 1 = not at all to 4 = very much) and a global health/QoL subscale (scored on 1 = very bad to 7 = excellent). The EORTC QLQ-C30 was supplemented with the disease-specific module (e.g., QLQ-BR23 for breast cancer patients). The module QLQ-BR23 consists of 23 items covering disease specific questions on four function subscales (body image, sexual functioning, sexual enjoyment, future perspective; all scored on 1 = not at all to 4 = very much) and four symptom subscales/items (systemic therapy side effects, breast symptoms, arm symptoms, upset by hair loss; all scored on 1 = not at all to 4 = very much). The EORTC QLQ-C30 has been considered valid and reliable [34]. Finally, the survey covered sociodemographic information including age, marital status, education, and living situation.

In addition, the APN-GO provided medical and demographic data via a standardized online form. Medical data included details on participants’ diagnosis, cancer stage, treatment, and comorbidities. Three members of the research group (RE, AK, AN) downloaded all digital data on a password-protected server of the Eastern Switzerland University of Applied Sciences.

Data analysis

Entries into the digital diary were anonymized and translated. Semi-structured interviews were audio-recorded, transcribed verbatim in the language they were recorded in, anonymized, and translated. We used the software MAXQDA 2022 for support. Translations of the diary messages and interviews from French into German were conducted by AZ, who is bilingual and verified by EB, who is fluent in French. The qualitative data analysis followed an interpretive phenomenological approach according to van Manen [35] (Table 1). Exploring the meaning of trust and interprofessional collaboration along the cancer treatment pathway requires inductive analysis so that persons’ daily lives can be understood in an in-depth manner. Furthermore, this approach can contribute to uncovering the meanings that persons attach to their interactions and experiences across disciplines. EB and DB read and reread each interview as well as the transcripts from the digital diary. In a next step, each participant’s story was written down. The stories focused on essential themes closely linked with the research question and provided in-depth insight into the women’s lived experience.

We discussed the participants’ stories and initial themes within the research team at regular meetings. The meetings were reserved for data analysis purposes only. In these meetings, we aimed to identify and interpret essential information from all three data sources (digital diaries, interviews, questionnaires) that best reflected the women’s lived experience [35].

Table 1 Six-step approach (Van Manen [35])

Quantitative data from the online survey and the standardized medical form were analyzed using SPSS (version 24.0). We performed quality assurance and descriptive analyses following internal quality standards (e.g., early and ongoing data cleaning, exploration of outliers and missing data).

The qualitative and quantitative data were analyzed separately but compared at each completed treatment phase, particularly as the quantitative data helped inform and prepare for the subsequent interviews. When the interviews were completed and the last Threema messages were received, a conceptual model of trust was developed based on the merging of the different data strands (see Results section). As an example, the quantitative data underscored the initially very high degree of trust that the participants’ stated when entering the machinery of cancer care, not only in the health professionals and institutional processes but also in the system or organization itself. These different levels of trust are also presented in the model.

Quality assurance

For patient and public involvement, we invited a breast cancer survivor to be part of our research team [36]. The cancer survivor was involved in all stages of the study. Bringing in the unique perspective of the cancer survivor allowed us to consider associations and thoughts about certain issues that researchers may otherwise not have considered [37]. First, the cancer survivor tested the consent forms and the online survey for readability and understandability. At a later stage, she took part in discussing and reflecting on initial themes and in validating the study findings [38]. Credibility and dependability were also ensured through critical discussions within the research team. Moreover, the first three analysis meetings were accompanied by an expert in phenomenology and an expert in qualitative data analysis. We involved the two APN-GOs from the collaborating centers for validation purposes. To ensure that we did not overlook any essential themes relevant to the research question and lived experience, we involved other researchers at different time points to identify missing themes or patterns. Moreover, the conducted semi-structured interviews with five health professionals helped to elaborate on women’s perceptions and to validate our initial findings. In addition, we discussed preliminary findings at an international symposium on trust with researchers from the fields of psychology, sociology, and education. Transferability and conformability were considered by triangulating different types and sources of data [39]. For instance, we compared qualitative and quantitative data between each treatment phase for each woman. We also compared data between women and reflected them back to the health professionals or to the cancer survivor within the research team [40].

Researcher’s role and reflexivity

The research team closely engaged with the study participants over a prolonged period of time and discussed sensitive issues with them. Thereby, familiarity in researcher-participant relationships was fostered. At weekly team meetings the researchers reflected on their role in the research process and on their assumptions. Ongoing dialogue, peer debriefing, and thoughtful communication practices were used to minimize bias and deepen understanding, ensuring that the women’s perspectives shaped the study authentically. This is discussed in greater detail in another article [30].

Ethical considerations

The responsible Ethics Committee of Northwest and Central Switzerland (EKNZ) approved the study (reg. number 2021 − 00730), which was carried out in accordance with the Declaration of Helsinki. Women interested in participation received an information letter from their treating APN-GO and provided written informed consent prior to commencing with the study. All participants were informed that participation is completely voluntary and non-participation or withdrawal is possible at any time. Moreover, we informed the participants that study withdrawal would not have any consequences for further care, treatment, or employment. Further details on data security and encryption of patient information are reported elsewhere [30].

Results

In total, twelve women participated in this study (out of 21 women approached to take part). The main reason for declining participation was that the women perceived the burden of taking part as too high. The research team conducted 45 telephone interviews with the participants over a mean study period of 10.5 months (2–16 months). In addition, we received all 57 questionnaires sent out to the participants for each treatment phase. None of the women withdrew from the study.

Participant characteristics

All women had an initial diagnosis of breast cancer. Their median age was 50 years (range: 27–66 years). Seven women were married, three were divorced and two were single. None of the women lived alone in her household. Five participants had a background in medicine, nursing, or biology. However, none of the women had any educational or professional experience in the field of oncology. In terms of education, one participant had compulsory schooling. All the others had at least an apprenticeship (n = 2) or a higher qualification (n = 9).

The twelve women had five different treatment pathways. The most common treatment pathway (n = 4) was neoadjuvant chemotherapy, followed by surgery, adjuvant radiation therapy and follow-up. Most women were UICC stage IA (n = 4; Table 2).

Table 2 Medical information of participants

Fatigue, dyspnea, and insomnia were the most prevalent symptoms in the neoadjuvant treatment phase. Pain was most prevalent in the surgery phase. In all other phases (diagnosis, adjuvant treatment and follow-up), the women reported insomnia as the most common symptom. Across all phases, health-related quality of life (HRQL) was lowest in the neoadjuvant chemotherapy phase. In this phase, the women reported the most treatment side-effects. Participants were especially burdened by hair loss in this phase. HRQL was highest in the diagnosis and follow-up phases (Fig. 2).

Fig. 2

Boxplot mean health-related quality of life across all treatment phases for N = 12 participants. Treatment phases are not necessarily in chronologic order for all participants

In comparison, emotional functioning was lowest in the diagnosis phase and highest during follow-up (Fig. 3).

Fig. 3

Boxplot mean emotional function across all treatment phases for N = 12 participants

The phenomenon of trust

Overall, trust in physicians, nurses and in the organization was high, based on both the qualitative and quantitative findings. Regarding quantitative findings, on a scale of 1 to 4, the mean level of trust was 3.7 for physicians (Median: 4, Minimum 2, Maximum 4) and nursing staff (Median: 4, Minimum 1, Maximum 4), and 3.5 for the organization (Median: 4, Minimum: 1.3, Maximum: 4); see Supplementary Material 2). However, there were individual situations that reduced the level of trust in physicians, nursing staff or the organization. This was also visible in the quantitative data (see Supplementary Materials 3 and 4). Once the initial level of trust was diminished for some participants, it did not return to its original level in the subsequent treatment phases.

The analysis brought forward several themes related to the phenomenon of trust. The interrelationships between these themes are depicted in the conceptual model (Fig. 4). The conceptual model visualizes how trust is built and shaped along the entire cancer treatment pathway from the women’s perspective. The different aspects of the model can be traversed multiple times, for example, at each new interaction with a health professional. Each woman enters the “machinery” and depending on the circumstances may follow the arrows on the right side (predominant trust) or on the left side (predominant mistrust) with specific experiences and strategies.

Prior to entering the “machinery” for cancer treatment, each woman was initially faced with a strong sense of uncertainty considering the (potential) cancer diagnosis. Grace¹ described this experience in the following way:

“I am waiting for the start of my treatment. A long time has passed. Now I want to get to the heart of the matter. It’s a tsunami. It’s worse than a nightmare. I know what awaits me. But at the same time, I also know that I have no idea what awaits me.” (Grace, diagnosis phase, Threema).

This period of having to wait for the certainty of diagnosis or for the start of cancer treatment was described by several women as a lengthy, strenuous, and emotionally taxing experience. The women felt suspended as if they were in a state of limbo between feelings of hope and despair. While they were in contact with numerous health professionals for diagnostic tests and examinations, they were faced with existential fears about what was to come. Often, they felt abandoned by health professionals during this time.

Fig. 4

Conceptual model of trust in breast cancer care

These initial experiences with health professionals in the diagnosis phase laid the foundation for maintaining or developing trust within the cancer care “machinery”.

Certainty of cancer and shaken trust

The certainty of having a cancer diagnosis was an utterly shattering experience for most of the women. The diagnosis triggered existential fears and thus even more uncertainty. All remaining hope of being confronted with a false alarm was now gone. The trust they had in themselves and their (supposedly healthy) bodies, in life and the universe was severely shaken or even entirely lost, as in the example of Faith:

“Okay, I can’t go back. I have cancer. And then I’m going to fight. I will do what I must do. But it’s true that it [the diagnosis] has led me to … It has led me to react. (…) How can I explain this? I was shaken in the good sense of the word, to take action.” (Faith, diagnosis phase,interview).

Some women described a certain degree of self-evidence of being healthy. They experienced no debilitating symptoms or signs of illness prior to the confirmed diagnosis. All the more abruptly, they found themselves in the role of a patient. Almost overnight they had become an ill person who was dependent on others for care, who was reliant, yet without feeling anything was amiss now. Suddenly the women were confronted with the matter of survival. Quincy described this situation as an almost surreal experience in the phase of diagnosis:

“It’s just strange. I can’t find another word for it right now. It’s just peculiar. I’m sick and I feel fine. […] Five minutes ago I was healthy and now I am getting into something that (stutters) is just surreal.” (Quincy, diagnosis phase, interview).

The women tried to quickly find a way back to normality and to be healthy again. It was an ongoing process for the women to realize that they were actually striving towards a new normal and there was no way back. The cancer diagnosis had suddenly changed everything, including their perception of the world around them.

Trusting the “machinery” of biomedical cancer care

All participants in this study entered the “machinery” of biomedical cancer care for primary cancer treatment. This can be viewed as a pre-existing certain degree of trust in the biomedical system. And yet, this initial trust in the “machinery” did not prevent the women from exploring complementary treatments that they considered as a supplement to conventional biomedical treatment. Going down the path of conventional medicine, however, seemed to be predetermined: To survive, one must enter and succumb to the “machinery” of cancer treatment. One participant described the experience of being “swallowed” by the “machinery” at the start of cancer treatment. Sarah described the “machinery” as a “conveyor belt” that moved the body from one station to the next without an escape route:

“Since the breast cancer diagnosis, I have somehow found myself on a broad conveyor belt. My head is held firmly by a kind of suction cup, and my body is relentlessly and slowly pushed forward. It can neither move to the right nor to the left. From time to time, something is screwed on or removed. It [the body] is steadily transported forward. There are no breaks until all assembly stations have been passed. [The body is moved] forward, controlled by external forces, always forward. Every assembly step is precise. Every disassembly is deliberate.” (Sarah, surgery phase, Threema).

Another metaphor used for the “machinery” was a “carousel” that constantly rotates, from appointment to appointment, from professional to professional. Several women described relinquishing control to health professionals as a vital part of the “machinery”. However, this perspective of the biomedical setting functioning as a well-oiled machine also provided the women with a sense of security. Some women described it as very calming to know that certain treatment phases or activities, such as radiation therapy, followed a precise protocol that was repeated and never diverged:

“Just like it was the first time: I undressed and laid down. I looked at the machine. I knew it would rotate later. I knew everything that was being done. So, it’s not like, um, I didn’t just come in later and had to lie down and had to wait to see what happens, but I knew it. Everything is fine. It was exactly like that. This, too, gave me tremendous peace of mind again.” (Mary, radiation phase, interview).

The women let go of their old selves as part of the process of entering the “machinery”. For the next few months, they described how they became a “cancer patient”. The onset of chemotherapy-induced hair loss was one of the first symptoms that marked the loss of the “healthy former self”. Quincy described this experience in the following way:

“Now I still hope that I can keep my own hair… (Hope dies last ) […] Another emotional adventure when the hair is gone; it is brutally brought to one’s attention that I am ill, and at the moment, I still feel relatively healthy.” (Quincy, chemotherapy phase, Threema).

After having shaved her head, Quincy sent the following message:

“What was particular after shaving [my head] – I, as a person, sat in the chair, looked into the mirror, and a stranger looked at me. Yes, indeed, that’s me without hair, just as God created me.” (Quincy, chemotherapy phase, Threema).

This also led to a sense of anonymity and a feeling of exposure, as the women considered their hair an important part of their identity, individuality, and femininity.

Trust depending on context, expertise and/or person-centeredness

When entering the “machinery” during the first treatment phase, some women felt lost, like a ping pong ball being hurled from appointment to appointment without much choice. Within the “machinery”, the women were in a constant process of trust exploration. To determine whether or not there were sufficient conditions or evidence present to trust the health professional, a (conscious or most likely unconscious) critical examination took place. To different degrees, this trust was also influenced by the woman’s trust in the health care institution and the health care system as a whole.

The meaning or importance of trust varied depending on certain contextual factors, such as treatment phase, complexity, or severity of diagnosis. The women emphasized the central role of trusting their treating healthcare professionals and teams, especially in the face of the highly unsettling cancer diagnosis, the looming threat of mortality, and the complexities of the treatment journey ahead. Moreover, they described their level of trust to be strongly linked with their own personality or past experiences. The aspect of personality associated with the other contextual factors of a specific treatment phase was described by Polly in the following way:

“I can’t cut out the tumor myself, nor can I treat myself on my own. So, in this way, one is reliant on others, and I accept it. I’ve never doubted it, so there’s no room for doubt in what people are doing for me. I don’t know, I think it’s just blind trust. Probably due to the situation one finds oneself in.” (Polly, surgery phase, interview).

Within the “machinery”, the women often oscillated between feelings of uncertainty or fear (e.g., fear of treatment, side effects, impact on family, fear of death) and hope (e.g., to recover, to defeat cancer). The women described that health professionals indeed could actively influence these aspects to some extent and foster a relationship of trust by following a person-centered approach and by demonstrating their expertise. Which of these two aspects was of primary importance depended on the situation and on the women’s expectations. Several women described feeling well-cared for when professionals were able to engage with their individual circumstances. As an example, Eve mentioned the following points that facilitated trust:

“Throughout the entire treatment, it was important for me that I am taken seriously as an individual and not just as some number or diagnosis. This has been crucial for me. And it still is. I just trusted the staff right from the beginning and thought: Okay, they know what they are doing. So, in terms of trust, maybe it wasn’t very complicated. What mattered was that they saw me as an individual and not as breast cancer case 394.” (Eve, follow-up phase, interview).

The women also experienced person-centeredness when their health professionals were consistent contact persons who knew them well. Some women implied or mentioned that the female gender of the health professional played a role since the disease affected their femininity. It was important for the women that health professionals perceived them as human beings, enquired about their families, showed interest in their lives, and expressed empathy. Faith described a moment of very high vulnerability. After surgery, she was shocked to find out that several more lymph nodes were affected than the physicians had anticipated. Her treating APN-GO came to her bedside to calm her:

“After the surgery, there were [x number of lymph nodes] that were malignant. So, I panicked because I thought: Now it’s in your body. Then she [the APN-GO] came. She came to me. And reassured me. She reassured me by rubbing my back with her hand. (…) She really listened and calmed me down. She told me that I have to undergo chemotherapy and radiation therapy for prevention. ‘You’re doing well. Everything necessary has been removed.’ (…) She calms me down, and then I trust her.” (Faith, surgery phase, interview).

In terms of expertise, the women described a sense of trust in health professionals, because they felt they could answer their questions and provided them with helpful information. Several women also mentioned that they perceived the health professionals to be well trained. They trusted that all health professionals of the team had the necessary education and skillset to treat them, thereby implying trust in the health care system as a whole. In this regard, the women also described that they felt comfortable when their treating specialists changed. Some participants described that they perceived the health professionals as part of an interprofessional team and as one element of the functioning “machinery”. In the following quote, Laura’s trust in her oncologist was strengthened, because he consulted with his peers to reassure her:

“Every time I saw her [the surgeon] and asked my questions, she could answer them, even if it wasn’t her specialty. So, over time, trust was strengthened. The same is true for the appointments with the oncologist. (…) When I finished surgery and had to go to him, he informed me that, ultimately, I wouldn’t need radiation therapy. Before surgery, they had assured me 100% that I would need radiation therapy. (…) I was really surprised (…) The next week, I saw him [oncologist] again, and he told me that he had checked it again with the entire team. And then, that it was really 100% certain. I can say that trust was strengthened because he checked it again to reassure me that it was correct.” (Laura, surgery phase, interview).

If a woman had positive prior experiences with healthcare professionals and the anticipated level of expertise was evident, the experience of person-centered care further facilitated trust in health professionals as opposed to feelings of mistrust.

Weighing trust and mistrust

Following the logic of the model, a higher degree of trust based on context, expertise and person-centeredness allowed several women to feel cared for (Fig. 4). This meant that trust was not perceived as a danger but as something to “embrace” or to feel gratitude for, as several women described. In comparison, some women expressed a high degree of mistrust, which made them feel particularly vulnerable and at the mercy of others:

“To be honest, I have no trust left at all. I have absolutely no trust, not even in the physician I have been seeing almost the entire time. Because on one or two occasions, I felt that she sometimes made contradictory statements. I am quite attentive. So, as soon as there was a contradictory statement, it made me doubt a little. But I told myself: No, but that’s okay, they are the professionals anyway. I have to trust them. Now I’ve seen that there was this uncertainty. And I think that I shouldn’t have trusted them in the first place, and yes, I have no trust left.” (Grace, follow-up phase, interview).

This quote is an example of mistrust outweighing the feeling of trust, as indicated in the pathway on the left side of the conceptual model. The participant felt even more let down due to a particular occurrence because she initially had trusted the health professionals – although she felt that she should have been more skeptical based on her own background as a health professional. This decline in the woman’s trust also became visible in the questionnaire data (see Supplementary Material 3, follow-up). The sense of mistrust also suggests a degree of shattered self-trust. The participant realized that her trust in health professionals was inappropriate and that she misjudged the situation. Nevertheless, she was still willing (although reluctantly) to give the professionals a final chance to rectify the situation. Her descriptions reflected feelings of resignation or surrender, as visualized on the left side of the model (Fig. 4).

Due to situations like this, some women no longer trusted their treating health professionals. Still, they did not mention to seriously consider leaving the hospital and to change the “machinery”, thereby escaping any further encounter. Instead, they rather tried to find a way to navigate their feelings of mistrust. As common strategies for dealing with mistrust, the women described scrutinizing or exercising control. In the following quote, Norma reflected on a situation in which she did not entirely trust the health professionals to give her the medication on time. This lack of trust was based on her previous experience and observations:

“I can’t say that there was no trust at all, but I had to exercise some control by myself (…). In one situation (…) if I hadn’t thought about [the medication] myself, it would simply have been forgotten all the time.” (Norma, chemotherapy phase, interview).

In contrast, several women described feeling well cared for and privileged to receive such a good treatment:

“Since the situation is what it is, one is rather grateful. I simply don’t question it. Never in my life I would not trust people. Of course, it [the situation] is unusual.” (Polly, surgery phase, interview).

Positive interactions allowing participants to experience a predominant degree of trust are depicted on the right side of the model (Fig. 4).

Some women mentioned a type of “informed trust”: They trusted their health professionals but also sought additional information. This information concerned aspects such as dietary changes or physical activity to help deal with side-effects and actively participate in one’s own health. In the following quote, Rose demonstrates a certain strategy of blending out potential trust issues. She had initially searched for information on her own in a situation of uncertainty. Then she changed her mind:

“Trust, yes. I have always had that. Even though the first surgery went wrong now. And that can happen, you know. The chance is not so high, but somehow, I read somewhere that it is 2%. Maybe it’s more. I once googled it. But then I stopped right away [audible smile]. And well, I just was not so lucky in this situation.” (Rose, follow-up phase, interview).

Instead of continuing to investigate whether or not the health professionals had made a mistake, Rose decided not to pursue this any further. Faith, who expressed a high degree of trust, also mentioned the strategy of trying to stay positive. Positive thinking was essential for her to fight for survival:

“I try to think positively, to live day by day and to have trust. That’s how it is. I try to work on myself to accept that.” (Faith, surgery phase, interview).

Faith clearly associated keeping a hopeful outlook and positive attitude with conquering the illness.

Striving for a new normal

Irrespective of the level of trust or mistrust in health professionals or in the healthcare system, all twelve women, had the same goal: Survival and striving to be healthy again. Only after some time they slowly began to realize that they were striving towards a new normal. This was a normal in which they would still be confronted with long-term effects of cancer and treatment. The outlook on acute survival and normalcy after the illness started to shift towards living with a new sense of normalcy after the acute phase of treatment. This was no simple feat. Eve reported a frightening experience in which she had thought herself healed from a potentially deadly illness. However, cancer suddenly became again an acute threat instead of a latent one:

“And then I said to him [the medical professional]: Why do I have this? Why are the [parameters from a blood test] so high? And he looked at me and said: ‘That’s normal, you have cancer’. Okay. He just threw that at my face. And then I said: Okay, okay, I’ll go home and deal with my problems. That was really not easy. Especially, because at that moment I no longer had cancer. No active cancer anymore.” (Eve, follow-up phase, interview).

In this example, Eve described the medical professional abruptly and unemotionally reminding her of the harsh fact that she still has cancer. She had hoped to leave the illness behind but was suffering from breathlessness. Moreover, in this phase Eve felt that her treating oncologist was not sufficiently informed about her persisting symptoms. These aspects also diminished her trust. She described this in the follow-up interview. Her reduced trust was also reflected in the questionnaire data (see Supplementary Material 4, adjuvant radiation/follow-up).

The women grappled with the fear of recurrence during routine check-up appointments or when unexpected symptoms arose. This indicated a sense of heightened bodily vigilance. In hindsight, several women described that having experienced the cancer treatment felt surreal to them. At times they were suddenly forced to acknowledge the chronicity of their illness, for instance when unexpected symptoms arose:

“The assembly line somehow no longer exists. That’s gone (laughs). I don’t have that feeling anymore. For me it’s like I can shape my own life again (laughs) a bit – by myself or take it into my own hands, to put it bluntly. But the surreal thing is that I wake up from time to time and I am really a bit scared: Will it come back? Because that’s the tangible feeling that I have now. That brings me back to reality that I really had that [illness] (…). I still have the feeling that it’s a story, like a movie playing next to me.” (Susan, follow-up phase, interview).

In the follow-up phase, several women described occurrences in which they were grateful to have a trusted health professional to turn to. At the same time, however, they also perceived that they were suddenly left to their own devices. They no longer had routine appointments with their APN-GO or oncologist. Every follow-up appointment or unexpected symptom, coupled with the fear of recurrence, was part of the women’s journey to establish a new sense of normalcy in their daily lives and to regain trust in their bodies.

Discussion

In this study, we explored the phenomenon of trust along the treatment pathway of women with breast cancer – from diagnosis to follow-up. The findings show that the women perceived trust as essential element of their treatment experience. Most of them described a high degree of trust in the health care system as a whole and in their treating health professionals, which was also confirmed in the quantitative data. Rasiah and colleagues [41] characterized these two levels as macro and micro levels of trust. The micro level of trust was strengthened when health professionals’ expertise and competence was apparent and they treated the patient as an individual person and not as a mere number. This coincides with findings from Pichler and colleagues who argued that a trusting relationship built on competence and care can provide a reassuring buffer against the uncertainty associated with the disease [25].

Our data showed that the women put their trust in biomedical technologies and machines or in technologized treatment processes as relevant for their recovery and ultimately survival. This can be described as an added meso level of trust that was sandwiched between the individual and systems level. However, trust in highly technologized medicine can also be viewed as a component within the overall healthcare system [42].

Having one’s trust in an individual health professional fundamentally shaken could also send ripples across the other two levels of trust and vice versa, a pattern that was also visible in the quantitative data. Hall et al. explained these levels as “objects of trust” strongly interacting with one another [20]. The women’s initial socially constructed trust or so-called “blind trust” (without being familiar with their treating health professionals) was not easily diminished. Smith pointed out that patients can tolerate insecurities as a result of the strong influence trust has on positive treatment perception [43]. In our study, maintaining, developing, or regaining trust in individual health professionals was described as a process strongly influenced by contextual factors (e.g., previous positive or negative personal experiences). Women describing a lack of trust in their health professionals also showed strategies of trying to exercise control. There is a fine line between situations of mistrust and trust. Some participants scrutinized health professionals’ actions while others trusted their health professionals but also asked questions to receive more detailed information. In this regard, we draw on the locus of control theory for better understanding. This theory describes how behavior is influenced by a person’s perception: Does she/he perceive outcomes as a result of her/his own actions (internal locus of control) or as unrelated to her/his actions (external locus of control) [44]. In a study with oncological patients, Dopelt and colleagues found that looking for information or asking questions is characteristic for a high internal locus of control [45]. At the same time, however, a high external locus of control was associated with increased levels of trust in health professionals [46]. In this logic, we found that participants in our study manifested both dimensions, by actively participating in decision-making and by completely putting themselves in the hands of health professionals, for example during surgery.

None of the study participants decided to distance themselves from the “machinery” or to change the hospital despite situations of profound breaches in trust. This indicates a lack of perceived alternatives or scope of action. Indeed, the health care setting is unique in the sense that patients are in a heavily dependent situation. Therefore, their needs or their dependency may outweigh their urge to find treatment elsewhere, particularly when confronted with a potentially life-threatening disease [43].

The relevance of trust differed according to particular phases. Some phases entailed higher levels of complexity, uncertainty, and vulnerability. Uncertainty was particularly pronounced in the diagnosis phase, which may also have been indicated by the lower scores of emotional functioning in this phase according to the questionnaire data.

Several women also mentioned high levels of anxiety prior to starting chemotherapy. This was also addressed by Bronner and colleagues [47]. Some women expressed gratitude and profound levels of preemptive trust in health professionals who helped them to reduce their anxiety in these phases.

During the neoadjuvant phase, the quantitative data indicated high symptom burden due to side-effects and a dip in health-related quality of life. The necessity of being treated in an empathic and person-centered way to strengthen trust was particularly apparent during the diagnosis and chemotherapy phases. Moreover, the machine-like functioning of biomedical cancer care and the technologized treatment provided the women with a sense of security. This meso level of trust may be characterized by the biomedical machinery’s perceived automation and high accuracy in the absence of (human) mistakes. The significance of this level of trust became particularly visible in the surgery and radiation phase. During the surgery phase, the women emphasized the necessity of trusting their surgeons’ competence to perform invasive procedures without error. They did not necessarily seek empathetic interaction but appeared to expect their surgeons to operate with machine-like precision, alongside possessing the necessary knowledge and manual skills. Conversely, during radiation therapy, the women’s focus shifted to the radiation technology itself, with health professionals in a more supportive role. As Lin and colleagues pointed out [48], with the emergence and central role of technology in health care, trust is no longer only relevant between humans (e.g., patients and health professionals) but also between humans and machines. Interacting with both health professionals and machines also meant that the most intimate areas of the women’s bodies were objectified. Gahlings [6] refers to this as the tension between the technical-medical objectification of the female body in cancer treatment and subjective bodily sensations and personal well-being. While the women expressed their trust in medical technologies for specific tasks (e.g., for radiation), they acknowledged the importance of being treated as a human being by health professionals.

As a supplement to high-tech conventional medicine, several participants mentioned their intention to incorporate complementary treatments. In line with observations by Girke in the oncology and palliative care setting [49], the women did not describe this as a lack of trust in biomedical cancer care but as an act of self-empowerment. This can be interpreted as the women wanting to respect the subjectivity of their bodies and to address individual needs on more than just a biomedical level. The distinction between the objective, manifest cancer diagnosis (that can be treated within the “machinery”) and the person’s subjective well-being (which is addressed by other means) could be interpreted as an important coping strategy to combat cancer. However, complementary treatment was a topic some women felt insufficiently informed about.

When looking at the end of therapy and the follow-up phase, it was striking that the women had not regained trust in their bodies. They expressed ongoing fears of recurrence. Galica and colleagues described similar findings [11]. They underlined that women’s distrust of their body after having cancer was particularly relevant when coming to terms with their new life [11]. In our study, several women expressed that they lacked a trusted health professional to accompany them during the follow-up phase, thereby negatively affecting the continuity of care. However, several women were confronted with long-term side-effects. Oshima and colleagues [50] have pointed out that ongoing support from trusted health professionals who are also experienced in dealing with prolonged symptoms is particularly important. In this regard, studies have highlighted the crucial role of APNs [51, 52] and oncology specialists in comparison to general practitioners or gynecologists.

Strengths and limitations

A notable strength of our study is that none of the participants dropped out, despite the extended duration of data collection and phases with high patient burden. The high retention underscores the women’s commitment to the study. It also suggests that our attentive accompaniment as researchers throughout all phases (including follow-up) may have contributed to their sustained participation. Another strength of the study is its longitudinal focus on the development of trust and other experiences with data covering all major treatment phases – from diagnosis to follow-up. This comprehensive depiction ensures an in-depth understanding of the interorganizational patient journey concerning trust, interaction with health professionals, and treatment outcomes. It enhances the study’s robustness and applicability. The novel data collection methods, in particular the mobile messenger service for data collection and interaction with participants, improved methodological rigor. Continuous and timely interaction via the mobile messenger service allowed us to partake in the participants’ lived experience almost in real time, thereby reducing recall bias. We found this method to be particularly suitable for the phenomenological approach. Additionally, the merging of qualitative (digital diaries and interviews) and quantitative data (questionnaire) throughout the data collection period added another layer of quality assurance. In particular, the quantitative data was in line with our qualitative findings and therefore also strengthened our conclusions drawn. Moreover, the quantitative data allowed us to identify certain patterns, for instance with regard to symptom burden and changes in the levels of trust. In the interviews we could later elaborate and contextualize these patterns. Finally, we gained invaluable insights from a cancer survivor. The inclusion of a breast cancer survivor as part of our research team provided unique perspectives and insights that helped us to contextualize the results. By considering her viewpoint during all phases of the study, we were able to explore certain issues in more depth that we may otherwise have overlooked [36].

A limitation to be considered is recruitment. Women with breast cancer were recruited exclusively by the APNs. This might have introduced a certain selection bias, as the APNs may have been more prone to approach specific patients, such as those with a lower symptom burden. However, we found that the patient characteristics showed a certain diversity regarding treatment, age or education. Moreover, we anticipated that women who were more tech-savvy might be more likely to participate in the study since they primarily used a tablet to communicate regularly with the research team. However, our findings revealed that technological literacy varied among participants, and some had limited technological proficiency. Moreover, the digital diaries were not as much a part of the women’s lives as we had originally hoped and sending messages to us was sometimes forgotten [30].

Our aim was to recruit women with various gynecological cancers and the overall study was also designed to not only focus on breast cancer. However, we only were able to recruit those with breast cancer. From a positivist perspective, the sample size of twelve women may be considered small. Therefore, our findings must be considered with caution when referring to the broader population of women with breast cancer. However, the combination of methods - including the collection of 57 questionnaires, digital diary messages and over 40 in-depth interviews – adds a level of generalizability that would not have been achieved through a single approach.

Conclusion

Our study revealed that women with breast cancer experienced a high degree of uncertainty and anxiety, with trust being particularly important. Most women described a high level of trust in the health care system as a whole and in their treating health professionals, which helped them to cope with uncertainty. Professionals were able to positively influence the women’s trust to a certain extent by competently caring for them on the one hand and by empathizing with them on the other. In addition, the perception of the biomedical cancer treatment as a well-functioning “machinery” also provided the women with a sense of security. As an essential part of the “machinery” themselves, health professionals should reflect their role in each phase. They should consciously consider the importance of providing person-centered care and demonstrating their expertise in high-tech medicine at the same time. In this way, health professionals can combine potentially contradicting demands for building trust: a technological and a person-centered aspect.