A qualitative exploration of fear of cancer recurrence in caregivers

Fear of cancer recurrence (FCR) is one of the most common unmet needs for cancer patients and caregivers. Yet little is known about the potentially unique nature of caregiver FCR. Our research aimed to address this gap by qualitatively exploring the features and impact of caregiver FCR.

than those they care for. [8][9][10] Smith and colleagues 10 proposed that, like distress, 11 there is a bidirectional relationship between patient and caregiver FCR. Hence, caregiver FCR may reduce both patient and caregiver QoL and exacerbate poorer patient health outcomes by reinforcing patient concerns or compromising the caregiver's ability to provide support.
The paucity of research on caregiver FCR has contributed to a lack of empirically derived models, measures and interventions specific to caregiver experiences. Generally, biased metacognitions and threat interpretations of cancer-related stimuli are considered key in the development and maintenance of FCR among cancer patients. 3,12,13 Like anxiety and trauma-related disorders, this often prompts maladaptive coping and avoidance; alleviating immediate distress but maintaining cognitively biased cycles of anxiety. 3 However, as suggested by Webb and colleagues, 14 there may be unique aspects of caregiver FCR that are not captured in patient models.
In their systematic review and meta-synthesis of qualitative studies, Webb and colleagues 14 hypothesised that an overarching fear of losing the patient may drive caregiver fears and the desire to protect. An important caveat to the review findings was that none of the included studies explored caregiver FCR as a primary focus.
Therefore, our study aimed to explore caregiver FCR. Specifically, we conducted semi-structured interviews to qualitatively explore.
(1) Caregiver experiences of FCR (2) The impact of these fears, and (3) How caregivers respond to and manage these fears.

| Study design
This qualitative interview study used a Grounded Theory methodology 15 to explore caregiver FCR.

| Participants
We recruited primary caregivers of people with an experience of cancer through (1) Breast Cancer Network Australia (2) Register4, and (3) cancer-related online communities via social media. Participants were eligible if they were over the age of 18, lived in Australia and had sufficient English to complete a questionnaire and telephone interview. Bereaved caregivers were excluded.

| Procedure
The study was approved by The University of Sydney Human Research Ethics Committee (2020/811). An online study invitation was distributed through the relevant platforms and included a link to the participant information sheet, consent form and survey.
Semi-structured telephone interviews were conducted using a constant comparative methodology. 19 All interviews were audiorecorded and transcribed verbatim. Interviews were conducted until data saturation was reached. 15

| Data analysis
Quantitative survey data was reported descriptively, with categorical data reported as percentages, and continuous data reported as means, ranges and standard deviations.
Interview transcripts were uploaded into NVIVO 20  Caregivers were also fearful of the potential suffering associated with further cancer treatment because of a recurrence. Many perceived that they were unable to alleviate the patient's suffering, leaving caregivers in a position of helplessly "watching" their loved one suffer through cancer and/or its treatment. When he [patient] said he was concerned it sort of threw me into an overdrive of concern. [P008-S]

| Protective monitoring
Almost all caregivers felt the need to protect the patient from a recurrence or recurrence-related distress. Consequently, many caregivers were hypervigilant about the patient's health and proactively monitored for signs of a recurrence, in the hope that early detection would facilitate a better prognosis. This was especially evident among participants who perceived that the patient's initial diagnosis was delayed or mismanaged: They always say I'm overprotective…But I'm just scared something's going to be missed. [P020-C] 1078 -BANKS ET AL.

| Protective buffering
Caregivers also expressed the desire to shield the patient from cancer-related stimuli that may instil further distress or fear. As a result, caregivers frequently suppressed their personal concerns, prioritising the patient's emotional wellbeing over their own: I know it's wrong, but I'd rather me shut that side down and let him talk to me because he doesn't talk to anyone else about it. [P008-S] This protective buffering commonly extended beyond the patient, with caregivers not wanting to "burden" others with their troubles. At times, this left caregiver fears completely unspoken.

| Need to be seen as strong
Relatedly, the majority of caregivers felt the need to be "in control and seen to be managing very well" [P006], further amplifying the tendency to conceal personal distress. In most instances, this need to be seen as strong was a further attempt to support and protect the patient.
However, at times it was also a form of self-protection whereby caregivers assured themselves and others that they would be able to cope with a potential recurrence.

| Relational tension
In some cases, caregivers struggled to navigate the "fine line between offering support and taking over" [P032-SB], resulting in patient agitation and resistance: I try to care a lot for him. I try to do things. But I get in the way too much, he tells me. [P024-S] In return, caregivers were commonly exasperated by the patient's refusal to accept the support and protection they were trying to provide.  When caregiver duties were distributed across a support network, the sense of onus, overwhelm and loneliness was reduced.

| Theme 3-Unprepared to lose loved one
However, most participants were isolated and unsupported in their caregiving role, increasing a sense of burden and stress. In turn, these caregivers felt personally responsible for preparing for the unknown and controlling the uncontrollable: That side of things mentally takes a bit more of a toll.
Cause you know you gotta do it on your own. [P007-P]

| Responsibility-based fears
Due to the potentially "dire outcome" [P022-P] of a delayed recurrence diagnosis, several caregivers felt personally responsible for the early identification of a recurrence. These caregivers were fearful of missing recurrence signs, contributing to hypervigilance and protective monitoring. Other caregivers were fearful of causing a recurrence, and thus being responsible for the subsequent suffering of the patient. This fear was commonly fuelled by health anxiety, which was increased due to COVID-19: If I get COVID, am I going to pass it on to him? Is that going to be the thing that ends everything? [P001-S]

| Medical conflict and mistrust
Several caregivers perceived the patient's initial diagnosis to be mismanaged or delayed and were subsequently resentful or mistrusting of medical professionals. This increased a sense of personal responsibility, as caregivers felt they had to "fight" [P020-C] for the patient's wellbeing and monitor for signs of a recurrence: Every time she is sick, I worry that it's something more.

| DISCUSSION
The paucity of caregiver FCR research has hindered the development of empirically driven, caregiver-specific models, instruments and interventions. To address this critical gap, our study aimed to qualitatively explore caregiver experiences of FCR. Our findings align with prior literature by highlighting the unique components of caregiver FCR. However, unlike Webb and colleagues, 14 we argue that an overarching sense of personal responsibility is a key driver of caregiver FCR.

| Fear of the patient suffering
For all caregivers, a recurrence ultimately represented the suffering and loss of the patient. Such fears were driven by uncertainty about when or if a recurrence would happen and aggravated by triggering cancer-related stimuli. The particularly triggering nature of the patient's health may explain why those caring for someone with poorer health often have higher FCR. 10 In these cases, the patient's sickness or unexplained symptoms may act as a continual reminder of the possibility of a recurrence, triggering catastrophic thoughts and fuelling caregiver FCR.
Consistent with prior literature, 10 caregivers of younger patients were especially troubled by the life that would be lost should the patient die from a recurrence. The bidirectional relationship between patient and caregiver FCR may explain these findings, as FCR is also typically higher among younger patients. 1,10 Interestingly, some participants reported that the patient's concerns were an explicit trigger for their own FCR. The potentially causal relationship between caregiver and patient FCR is an interesting concept that necessitates further research.
Moreover, the loss of a parent is somewhat anticipated and normative, 24 whereas the loss (or cancer diagnosis) of any other relation is often unexpected, shocking and associated with stronger bereavement symptoms. 25 This could explain why participants caring for an elderly patient, specifically a parent, seemed to be comforted by the life of the patient that had already been lived.

| The protective caregiver
As suggested by Webb and colleagues, 14  F I G U R E 1 Visual depiction of the relationship between themes and subthemes. 'Fear of causing a recurrence' and 'Fear of missing signs of a recurrence' both come under responsibility-based fears (subtheme 0.1). While not a subtheme, intrusive thoughts of the worst-case scenario were often triggered by the patient's health (subtheme 1.2) and contributed to a need to prepare for the worst (subtheme 3.2).

| Unprepared for the worst
Preparedness for death refers to an individual's perceived readiness for the death of their loved one, and is thought to include cognitive, affective and behavioural components. 29 Contrary to prior literature, 9,32 we found that many participants were in a constant state of planning and preparation for the "worstcase scenario" (i.e., the death of the patient). It is possible that this hypervigilant behavioural preparation was an attempt to compensate for a caregiver's sense of being cognitively and emotionally unprepared for the loss of the patient. Importantly, such behaviours may become safety behaviours that counterproductively maintain FCR. 3 It is thus essential to address all components of caregivers' preparedness for the patient's death.

| The role of personal responsibility
Personal responsibility for the patient's health and wellbeing seemed to increase fears of the patient suffering, reinforce a desire to protect, and increase the burden of preparing for the worst-case scenario. To our knowledge, no research has explored the role of personal responsibility in FCR. However, bereavement literature has found that individuals commonly feel guilt after the death of a loved one. 33 This multidimensional construct includes responsibility guilt, where the individual perceives themselves to be at fault for causing or being unable to prevent death. 34 If individuals commonly feel responsible for the death of their loved one, and a recurrence signifies an increased risk of death, then it is logical that a caregiver's sense of personal responsibility is a key component of FCR.
Aligning with theoretical models of patient FCR, 3,12,13 it seems that the cognitive processing of threats has a greater impact on caregiver fears than the objective severity of the threat. Importantly, caregivers' sense of personal responsibility may be a secondary, unique layer of biased threat interpretation. While intrusive thoughts exaggerate the probability of a recurrence and/or the patient's death, a perceived need to protect the patient may feed into the fear-inducing belief that it will be the caregiver's fault if the cancer recurs. Responsibility guilt has been associated with poorer post-loss adjustment in bereaved caregivers, including prolonged grief and depressive symptoms. 35 Subsequently, caregiver-specific interventions are required to address the role of responsibility in caregiver FCR.
In our study, caregiver burden appeared to be alleviated by social support but aggravated by mistrust in medical professionals. While research is yet to explore the role of physician trust in FCR, bereavement literature suggests that healthcare dissatisfaction can significantly increase post-loss guilt. 35,36 Therefore, addressing caregiver-physician relations may be critical in mitigating FCR and preparing caregivers for the potential loss of the patient.

| Study limitations
Due to the homogeneity of our sample, there may have been critical components of caregiver FCR that were missed. Although not an eligibility criteria, all participants in our sample were female, Englishspeaking, and were married or in a committed domestic relationship.
While this represents the majority of caregivers in Australia, 37,38 any gender differences in FCR experience have not been captured in our study, limiting the generalisability of the findings. Given cancerrelated distress is reportedly higher among females, our participants may experience greater fear and more negative emotion compared to male caregivers. 39 Moreover, the impact of perceived medical miscommunication, uncertainty and sense of personal responsibility might be even more pronounced among caregivers from culturally and linguistically diverse communities. 40 Webb et al.'s (2022) systematic review highlighted a paucity of qualitative studies exploring FCR among caregivers of patients with advanced disease (3/13 studies). We sought to qualitatively explore differences in experiences by including a range of cancer types and stages. However, the small sample size and qualitative methodology does not enable further analysis of potential differences. Therefore, we suggest future research explores unique aspects of FCR within specific subpopulations of caregivers.

| Clinical implications
Current models, measures and interventions have overlooked the vastly different cancer experiences among patient-caregiver dyads.
Caregiver FCR may follow a similar general pattern to patient FCR, however, we argue that the driving forces, underlying fears and coping strategies are dissimilar. Our findings thus support the need for theoretical models, measures and interventions that account for the unique components of caregiver FCR. The recognition of caregivers' personal and patient-centred fears will also assist in identifying moderating and/or mediating factors for caregiver FCR.

| CONCLUSIONS
Our study is the first to specifically explore caregiver experiences of FCR and confirms conceptual differences between patient and caregiver fears. Specifically, our findings suggest caregiver FCR encompasses personal and patient-centred concerns that are demarcated by the patient's potential death. That is, caregivers are fearful of the precedent suffering of the patient and overwhelmed by 1082 -BANKS ET AL. uncertainty about how or if they will cope with the loss of their loved one. These fears arise in the context of an overarching feeling of personal responsibility which drives the constant need to protect and prepare. These unique aspects of caregiver FCR need to be better understood if we are to truly support those who care for the growing number of cancer survivors.