A Qualitative Exploration of the Fear of Recurrence Experienced by the Partners of Breast Cancer Survivors

doi:10.21203/rs.3.rs-1749708/v1

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Research Article

A Qualitative Exploration of the Fear of Recurrence Experienced by the Partners of Breast Cancer Survivors

https://doi.org/10.21203/rs.3.rs-1749708/v1

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Purpose: The current study aimed to qualitatively explore the meanings partners place on fear of cancer recurrence to provide further insight into this phenomenon.

Methods: Semi-structured interviews were conducted with eight male partners of breast cancer survivors, aged 50 years or older. The interviews were audio-recorded, transcribed, and then analysed through an inductive thematic analysis.

Results: Four general themes were constructed from the data: shared experience, external reminders, facing death and living life, and refrain from worry. The findings highlight the partners’ perception of sharing the cancer journey with the survivor. Thus, the partners’ fear of cancer recurrence was perpetuated by cancer-related reminders, which induced a fear of the survivors’ death and a subsequent endeavor to live a fulfilling life. Regardless, when faced with their fear of cancer recurrence, the partners avoided thinking or worrying about the possibility of a cancer recurrence.

Conclusion: These results will provide a conceptual framework for future research to develop and test interventions targeted towards the fear of cancer recurrence experienced by the partners of breast cancer survivors.

Fear of cancer recurrence (FCR)

Partners

Breast Cancer

Qualitative design

Thematic analysis

Semi-structured interview

There were 17,492 new breast cancer cases diagnosed in 2016 in Australia [1]. Nonetheless, Australia has one of the best breast cancer survival rates in the world, with a 90.8 per cent chance of surviving five years post-diagnosis [2].

Breast cancer recurrence refers to the return of cancer following the cessation of treatment and an apparent absence of disease [3]. Cancer recurrence is of particular concern for women who have had breast cancer, as it can recur at any time, sometimes more than 20 to 30 years post survivorship [4]. Previous literature has reported that fear of cancer recurrence (FCR) is one of the most common and distressing psychological issues to result from breast cancer [5–6]

In relation to FCR, breast cancer survivors typically engage in time-consuming health behaviours, such as undergoing constant bodily checks and changing their eating and exercise habits, which often heightens their FCR [7–8]. Additionally, fear of death appears to be the most salient contributor to FCR for breast cancer survivors [9–10], where survivors often believe death is inevitable due to the possible recurrence of cancer and they struggle to accept their mortality [11]. Besides fearing death, previous literature has concluded that FCR is exacerbated by a fear of experiencing further pain, sickness, loss of autonomy, facing more emotional difficulties, having to undergo additional treatment [10, 12], and of the impact a recurrence would have on loved ones [13]

The partners of breast cancer survivors generally experience either equal [14–15] or greater FCR as compared to the survivor [16]. Subsequently, the partner’s FCR is often indirectly communicated to the survivor further directly increasing the survivor’s FCR [17]. Subsequently, negatively influencing the survivors’ social, emotional, and physical functioning by enabling constant worry, fatigue, anger, and bodily pain [15, 17]. In addition to the adverse impact for the survivors, the partners’ FCR is associated with their increased anxiety and depression [18].

While past research has pinpointed the significance, prevalence, and consequences of the partners’ FCR, they do not explore the underlying experience of this phenomenon as they did not address the origins, nature, or concerns that underlie the partners’ FCR. Regardless, the adverse impact of the partners’ FCR has led to the conclusion that the partners of breast cancer survivors should be included in therapies and interventions targeting FCR [14–17] To assist with this integration, exploratory research is required to develop a deeper understanding of the partners’ FCR to facilitate the inclusion of interventions that would effectively target the partners’ needs.

Gaining a deeper understanding of the partners’ FCR is the first step to learning how to manage and reduce this fear and could help facilitate their inclusion in relevant interventions and therapies targeting FCR. This is vital, as past literature has advocated for the partners’ inclusion in intervention and reiterated the importance of reducing the partners’ FCR to improve the mental health and quality of life for both the partner and the survivor [14–17]. This study therefore aims to qualitatively investigate the FCR experienced by the partners of breast cancer survivors.

Study design

The male partners of breast cancer survivors, aged 50 years or older, will be specifically examined as past literature suggests they experience significant FCR [14, 19–20]. Moreover, this population may possess qualities that increase their susceptibility to experiencing FCR, such as internalising their emotions [21] and having heightened caregiving burden [22–23]. A phenomenological qualitative design was utilised for this study to facilitate knowledge and understanding about how the partners of breast cancer survivors experience FCR [24]. This study employed in-depth, semi-structured interviews where participants were able to speak freely of their attitudes, experiences, and perceptions to better understand this phenomenon [25].

Participants

The inclusion criteria for this study were males aged 50 years or older who were in a current relationship with someone who is five years or more post breast cancer survivorship. A five-year survival rate is a key metric in determining cancer survivorship and FCR has shown to remain stable across this time [26]. Participants must have also been in this relationship during diagnosis and treatment and be able to speak English conversationally.

A phased approach to recruitment was undertaken for this study. The first phase consisted of snowballing, where known contacts of the first author passed on information to others, who were not known by the first author. This strategy was achieved either via email or a Facebook post on the first author’s account. Participants also shared the study details to their known contacts. The second phase consisted of the first author posting to numerous Facebook pages with the consent of the page administrator, including pages targeted towards breast cancer support and the local community.

Based on the information power model [27], interviews with eight participants with significant experience was deemed a sufficient sample size for rich data [28]

Procedure

Ethics was obtained from the Monash University Human Research Ethics Committee (Project ID: 28142). Written informed consent was obtained from participants prior to the commencement of interviews. Semi-structured interviews were used as a means of data collection. These interviews were guided by an interview schedule consisting of three open ended questions and several prompts:

1. Can you tell me about your experiences during your partner’s diagnosis and treatment for breast cancer?

2. How would you describe your life and experiences now that your partner has survived breast cancer?

3. When you think about the potential for breast cancer recurrence, what concerns you the most?

Each interview was audio-recorded and transcribed verbatim, and pseudonyms were created to protect the confidentiality of participants. Transcripts were emailed to participants to ensure credibility, by confirming the accuracy of information and giving participants the opportunity to clarify any misinterpretations. Each participant was reimbursed with a $30 Coles voucher.

Data analysis

Braun and Clarke’s six phase reflexive thematic analysis was used to analyse the data [29–30]

In phase one, the transcripts were read and re-read; and codes, or features related to FCR, were created in the second phase. An intermediate step of collating codes into categories was applied to assist with phase three, searching for themes. These categories were then further collapsed into initial themes, labelled protothemes [31]. In phase four, these protothemes were reviewed. Every code and category associated with each prototheme was revised to ensure they formed a coherent pattern [29]. Next, each transcript was re-read in relation to each prototheme, searching for supporting evidence for that prototheme. Any protothemes that did not have sufficient supporting evidence were either collapsed into other related protothemes or discarded. A thematic map was created at this stage to reflect the relationship between the final themes (Fig. 1). In phase five, the final themes were defined and labelled. Lastly, each theme was written and produced in phase six.

To establish trustworthiness, this study employed the typical qualitative research criteria of credibility, transferability, dependability, confirmability, and reflexivity [32–33]. Research is credible when the results reflect an accurate interpretation of the information provided by participants [32]. The interviewer reflected on content and emotion, asked follow-up questions, and encouraged elaboration and use of examples. These techniques confirmed accuracy of understanding which established credibility [32]. Credibility was further established through participants checking the transcripts and peer debriefing with all authors [33]. Transferability refers to the capacity for others to judge whether this study’s results can apply to different contexts [33]. This was confirmed by providing a detailed description of participant characteristics and recruitment procedures. Transferability will be further established through a transparent outline of the interviewer’s role and through clear interpretations of data within the results and discussion sections. Lastly, dependability refers to the consistency of the research process while confirmability is achieved when results reflect neutrality [32–33]. These were ensured through attending regular weekly meetings with all authors during the data analysis phase. This confirmed dependability by monitoring the consistency of methods and confirmability as interpretations were discussed in detail to certify objectivity.

Researcher characteristics and reflexivity

A key methodological issue was the impact of the interviewer being a young female interviewing older men. Quality data is facilitated through developing rapport, which is easier to establish when the interviewer and interviewee share similar characteristics [34]. Since rapport could not depend on shared qualities, rapport was established through openness, honesty, sincere interest, and active engagement [25, 31]

It was critical for the interviewer to be reflexive about their role throughout the research process and acknowledge the intersubjective nature of the interviews [32]. A reflexive journal was kept throughout the research process where the interviewer noted down her thoughts, feelings, experiences, perceived relationship with participants, interview techniques, and preconceptions. These were also discussed frequently between all authors.

As depicted in Table 1, the average age of participants was 66.5 years (SD = 10.88) and the average time post their partner’s breast cancer recovery was 13.13 years (SD = 8.76).

A total of four themes were constructed from the data. These themes were shared experience, external reminders, facing death and living life, and avoidance. The relationship between these themes is illustrated in a thematic map, as displayed in Fig. 1.

Theme One: Shared Experience

This theme demonstrates that participants perceived breast cancer as a shared experience with the survivor.

Sharing experience ultimately helps explain the origin of the partners’ FCR as the partners were active contributors throughout the breast cancer journey.

Participants’ perception of sharing the cancer experience was initially emphasised through inclusive language when participants were describing breast cancer:

“We had an illness; we fixed the illness” (Peter).

Moreover, most participants felt that while their partner experienced the physicality of the illness, the emotional experience was shared. This experience was conveyed when participants described their experiences during their partners’ breast cancer diagnosis and treatment.

“She has been through it physically, but I think we have both emotionally been there” (Ian)

As indicated by Ian, the emotional effects of cancer were a shared common experience expressed by all the participants. Consequently, the partners’ FCR appeared to stem from a fear of undergoing similar emotional hardships should cancer recur, as described by Stan:

“It would be an accumulative type of emotional upset” (Stan).

Thus, an accumulative type of emotional experience augmented the notion of a collective journey facing cancer together, indicating why FCR is shared with the partner.

Theme Two: External Reminders

Participants reported that their FCR was heightened when they were reminded of breast cancer. Particularly, most participants reported becoming fearful every time their partners experienced bodily pain or physical abnormality. For example, several participants mentioned that they equate every health issue experienced by their partner as a possible symptom of cancer recurrence:

“Every time you get a pain in the guts or if [my partner] gets a pain in her back, you kind of think oh no is this related to something” (Stan)

In addition to their hyper-vigilance, as expressed by Stan, FCR was also impacted by the influence of others. For instance, various participants experienced a heightened FCR when reminded of other people who had experienced the recurrence of cancer:

“We have lost a few friends and relatives to different cancers over the last few years, and they are our age, and if it happened to them, it could also happen to us”. (James)

As described by James, this theme demonstrates that external reminders of breast cancer, particularly health concerns along with the impact of other people’s experiences, influence partners’ FCR.

Theme Three: Facing Death and Living Life

Unsurprisingly, death was the participants’ main concern when considering the possibility of breast cancer recurrence. Furthermore, participants’ fear of their partners’ death forced them to develop a greater understanding of the concept of mortality. Thus, this theme reflects how participants’ heightened understanding of eventual death has urged them to make the most of their life.

Most participants had an overarching fear of their partners’ death when considering the possibility of a breast cancer recurrence as exemplified by Ben:

“Always on the back of my mind, are we going to be unlucky? Could [my partner] even die?” (Ben)

Similarly, participants’ awareness of their partners’ possible death imposed a developed recognition of the concept of mortality.

“It raises questions about her mortality, but it also brought forward versions of that for me too…the fact that she’s getting cancer makes me think about getting cancer as well, or other ways of dying” (Leo)

This quote by Leo demonstrates that participants’ FCR not only stemmed from a fear of their partners’ death but an overall awareness of mortality. Most participants also alluded to their heightened awareness of mortality through comments such as:

“She could go for a walk right now and a branch could fall on her head” (Martin)

Where participants expressed numerous different plausible causes of their partners’ death. This heightened awareness of mortality led all participants to try and make the most of their life:

“When we talk about our mortality, we’re quite forward-thinking in terms of the way we want to live the remaining parts of our life” (Tony)

Tony’s quotation illustrates the basic premise of this theme, that breast cancer forced participants to face death, which subsequently encouraged them to live life.

Theme Four: Refrain from worry

Many participants would deny experiencing FCR, however, would often contradict themselves by stating recurrence possibility is constantly on the back of their mind, as expressed by Peter.

“It is always on the back of your mind, but we never speak about it, we never even think about it” (Peter)

This quotation illustrates that whilst aware of recurrence possibility, participants refrained from worrying about their FCR. Similarly, many participants mentioned that they viewed worrying about recurrence as pointless:

“Over the years I have developed a deep appreciation for not worrying about things that you have no control over, and it is easier said than done” (Tony)

Tony demonstrates that some participants deliberately avoided thinking about recurrence, as worrying was futile. All participants shared these views and were motivated to move forward from their past:

“It has a great impact, obviously it has, but we do not talk about that. It is not taboo, but it happened, we survived, we have to move on” (Ian).

Similar to Ian, most participants did not want to think about their experiences with breast cancer or their FCR.

Summary of Thematic Map

As illustrated in the thematic map (Fig. 1.), these four themes were interrelated. Shared experience helps explain the origin of the partners’ FCR and why such fears exist to begin with. Because the cancer experience was shared, participants were also faced with reminders of this shared past. Thus, external reminders indicate what drives the partners’ FCR. Furthermore, because the cancer experience was shared between the partner and the survivor, the partner is also faced with the consequences of experiencing cancer. Specifically, fearing death, developing a heightened awareness of mortality, and experiencing an urge to make the most of life. Likewise, external reminders of breast cancer reminded the participant of the possibility of death. Nevertheless, when participants were reminded of breast cancer and faced with their FCR, they attempted to refrain from worry. Ultimately portraying how participants coped with their FCR.

The current study aimed to qualitatively investigate the FCR experienced by the male partners of breast cancer survivors, aged 50 years or older.

The partners of breast cancer survivors perceived the cancer journey as a shared experience. Accordingly, it is unsurprising that the partners fear re-experiencing similar emotional hardships in the case of a recurrence. This finding is in line with previous literature that found couples coping with cancer defined the ordeal as a “we-stress”, an experience in which both the survivor and the partner are equally involved [35]. The current study further exemplified this idea by illustrating that the partners’ conceptualisation of sharing the breast cancer experience continues post-cancer treatment and ultimately contributes to the partners’ experience of FCR. Thus, suggesting a need to view FCR as a shared experience between the partner and the survivor, rather than an experience solely of the individual diagnosed.

Considering the partners of breast cancer survivors share the hardships associated with diagnosis and treatment, the partners are also faced with reminders of this shared time. Precisely, the current study found that the partners’ FCR was perpetuated when the survivor experienced health concerns or when the partners learnt of other people’s cancer recurrences or cancer-related deaths. Both of these experiences have also been reported in breast cancer survivors [7, 36–37] further illustrating that the experience of FCR is shared between the partner and the survivor.

Hypervigilance to the survivors’ physical abnormalities relates to health anxiety, defined as the belief that any bodily sensation or change is indicative of a serious illness and commonly arises after witnessing a close friend or relative experience disease [38]. Since older age is associated with numerous health concerns [39], older adults are particularly susceptive to experiencing health anxiety [38]. Likewise, older adults are inevitably going to know more people diagnosed with or dying of cancer since older age is associated with higher cancer rates [2]. Thus, the current study contends that an older partners’ age could be associated with greater FCR [14, 19–20] based on experiencing regular external reminders that increase FCR. Additional research could examine this idea further to gain a more comprehensive understanding regarding the older partners’ vulnerability to experiencing FCR and to assist with their integration into relevant intervention.

In essence, external events such as health issues and cancer-related news, reminded participants of the possibility of the survivors’ death and their mortality, which urged them to make the most of their life. As highlighted in past literature, this overarching fear of death is also highly prevalent in breast cancer survivors [9–10], who have also reported a heightened mortality awareness [11].

Researchers have suggested that those close to cancer survivors are more aware of their mortality since the presence of the survivor reminds them of the prospect of death [40]. Yet, people exposed to this increased mortality awareness are typically more appreciative of their life [41]. This idea was reflected within the current research findings as participants reported an acceptance of their mortality and a subsequent endeavour to make the most of their life.

Alongside these experiences, the current study’s participants refrained from worrying about their FCR. It has been proposed that when a problem is uncontrollable, such as cancer recurrence, it can be productive to focus on managing the only controllable aspect, emotion [42]. Previous literature has also found that breast cancer survivors adopt similar avoidance mechanisms, which can be a valuable way of coping [43].

Future research should specifically explore the coping styles of the partners of breast cancer survivors, in addition to determining the psychological outcomes of different coping strategies. Further investigation into the partners’ coping styles would be beneficial as flawed coping mechanisms can be targeted and effective coping strategies can be implemented into interventions. Previous literature has claimed that appropriate use of intervention can improve the coping mechanisms employed by breast cancer survivors, and subsequently minimise their FCR [44–45]. After identifying effective coping techniques, similar strategies can be used to assist the partners of breast cancer survivors.

A strength of the current research was giving voice to the participants through the exploratory examination of an understudied phenomenon. Given past research explored the prevalence and significance of FCR in the partners of breast cancer survivors, the current study adds to existing literature by revealing potential underlying factors which contribute to this phenomenon.

A limitation of the current study was self-selection bias, as participants volunteered to be involved. Considering participation required discussion of topics that some people may find distressing, this sample may have disproportionally consisted of individuals who were comfortable discussing their FCR. Admittedly, within the recruitment process, a considerable number of people expressed interest and then withdrew before the interview and despite recruitment procedures reaching a large magnitude of eligible people, only a few people applied. Thus, these challenges within recruitment may have stemmed from a general discomfort with discussing FCR.

Secondly, snowball sampling generates a relatively homogeneous sample which may limit the current study’s transferability. Further research could replicate these methodologies with other partners of breast cancer survivors, such as partners of male survivors, or partners of different genders, ages, and sexual orientations.

The current study presented a conceptual framework so that future research can develop and test interventions to decrease the FCR experienced by the male partners of breast cancer survivors, aged 50 years or older. Specifically, additional studies are encouraged to further examine the partners’ shared cancer experience, health anxiety, the impact of cancer-related news, and the overall fear of death. Future studies can therefore determine whether these concepts broaden to wider populations and are therefore worth implementing in interventions and therapies targeted towards the partners’ FCR. Further studies, including quantitative studies of coping, are also recommended to improve intervention outcomes.

When working with male partners, healthcare providers are encouraged to facilitate a conversation about the partner’s possible perception of sharing experience, preoccupation with cancer-related reminders, fear of death, and the tendency to refrain from worry.

Funding: The authors declare that no funds, grants, or other support were received during the preparation of this manuscript

Competing Interests: The authors have no relevant financial or non-financial interests to disclose

Author Contributions: All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Elli Brown. The first draft of the manuscript was written by Elli Brown and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript

Ethics Approval: Ethics approval was obtained from the Monash University Human Research Ethics Committee (Project ID: 28142). All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Consent to Participate: Informed consent was obtained from all individual participants included in the study.

Consent to Publish: All research participants provided informed consent for publication, including the use of direct quotations.

Availability of data and material: N/A due to the confidential nature of the interviews

Code availability: N/A

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No competing interests reported.

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A Qualitative Exploration of the Fear of Recurrence Experienced by the Partners of Breast Cancer Survivors

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Abstract

Figures

Introduction

Methods

Study design

Participants

Procedure

Data analysis

Researcher characteristics and reflexivity

Results

Theme One: Shared Experience

Theme Two: External Reminders

Theme Three: Facing Death and Living Life

Theme Four: Refrain from worry

Summary of Thematic Map

Discussion

Conclusion

Statements & Declarations

References

Additional Declarations

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