Introduction

Cancer is one of the leading causes of death in the world [1]. In 2020, nearly 10 million people worldwide died due to cancer and 19.3 million new cases of cancer were reported [1]. For most people, the loss of a loved one to cancer is not unexpected, leaving time to adapt to the imminent death [2]. This period of forewarning has been described as grief before death—specifically anticipatory grief or more recently as pre-loss grief—and preparedness in the literature [3, 4]. Anticipatory grief was initially viewed as a resource in the sense of preparation for the loss and detachment, reducing psychological stress after the loss [5]. Because anticipatory grief has failed to fulfill the originally hypothesized function of anticipating the grieving process, Nielsen et al. [3] recommended the use of “pre-loss grief”, which will be used throughout this paper. In contrast to anticipatory grief indicating a function of this form of grief, pre-loss grief only describes grief before death [3].

Literature divides preparedness into two different operationalizations: preparedness for caregiving and preparedness for death. While preparedness for caregiving is characterized as the perception of readiness regarding caregiving activities for a patient [6], preparedness for death indicates how ready relatives feel for the death of their loved one [7]. Moreover, Hebert et al. [8] described that preparedness for death consists of affective, behavioral and cognitive factors. While preparedness for caregiving has a specific scale and has been frequently examined in previous studies [6, 9], preparedness for death represents a newer concept that lacks a consistent operationalization [4].

A recent review investigated caregivers of patients with cancer and found that high levels of pre-loss grief were a risk factor for poor adaption to the death and high levels of preparedness a protective factor for poor adaptation to the death [4]. Because both constructs influence the adjustment after death, it seems important to examine predictors of pre-loss grief and preparedness to provide insight into the grieving process and therefore develop specific interventions.

Previous literature has examined a variety of predictors of pre-loss grief and preparedness. Studies show that coping style, relationship quality, social support, health status and attachment style seem to be related to levels of pre-loss grief and/or preparedness [2, 10–16]. However, many studies show ambivalence regarding the direction of the effect, such as in the case of relationship quality, as some studies found a positive and others a negative association between quality of relationship and grief or preparedness [12, 17, 18]. Moreover, most studies only assessed preparedness for death or preparedness for caregiving, not exploring both constructs at the same time. Furthermore, there seem to be important variables that may influence pre-loss grief and preparedness that have not been studied yet. One example are COVID-19 related fears. While many studies assume negative effects of COVID-19 on the grieving process [19], studies investigating the effect of COVID-19 on bereavement mostly consist of expert opinions, commentaries or recommendations for research and practice, lacking of empirical studies [see 20]. Also, the individual prognosis of the loved ones may play a role in grieving and preparation processes [21, 22], however, its relationship with pre-loss grief or preparedness has not been studied yet.

Moreover, the aforementioned studies on factors related with pre-loss grief and preparedness mostly measured preparedness for death retrospectively with a single-item, not taking into account the different components described by Hebert et al. [see 4, 8]. Therefore, prospective studies on predictors of pre-loss grief and preparedness, that consider the different components of preparedness and distinguish between different conceptualizations of preparedness, are important.

This is, to our knowledge, the first empirical study to investigate pre-loss grief, preparedness for death and preparedness for caregiving simultaneously during the COVID-19 pandemic in relatives of people with cancer. It aims to explore various correlates of pre-loss grief and preparedness during the COVID-19 pandemic and therefore addresses current gaps in the literature. Specifically, the aims were to examine the relationship between coping strategies, quality of relationship, prognosis, COVID-19 related fears, health status, attachment style and: (1) pre-loss grief, (2) the multidimensional construct of preparedness for death and (3) preparedness for caregiving in relatives of cancer patients during the COVID-19 pandemic.

Materials and methods

Measures

For this study, the main outcomes were pre-loss grief and preparedness. Pre-loss grief was assessed using the Caregiver Grief Scale [23], containing 11 items. Participants are asked to answer on a 5-point Likert-scale (1 = strongly disagree; 5 = strongly agree). Higher scores indicate higher pre-loss grief. Internal consistency was good in this study (α = .82).

Preparedness measures included measures for preparedness for death and preparedness for caregiving. Questions for preparedness for death were self-generated, based on Schulz et al. [24], taking the different components suggested by Hebert et al. [8] into account. The three items can be rated on a 4-point Likert-scale (1 = not at all; 4 = very). Higher scores indicate higher preparedness for death. In the present study, Cronbach’s Alpha for preparedness for death was questionable (α = .69). However, because different and overlapping terminology is used to describe internal consistency [see 25] and values above .7 and .6 have been described as acceptable [e.g., 26], the overall scale was used for analyses.

Preparedness for caregiving was measured using the Preparedness for Caregiving Scale [6]. The scale consists of eight items, which can be answered on a 5-point Likert-scale (0 = not at all prepared; 4 = very well prepared). Higher values represent a higher perceived preparedness for caregiving. Internal consistency for this scale was excellent (α = .91). Two psychologists (JK and JT) independently translated the English version of the Preparedness for caregiving scale into German. Both versions were compared for differences and merged by consensus into one German version. This version was then back translated by a native speaker. The German Version of the preparedness for caregiving scale is provided within the S1 Table. For correlates, we assessed sociodemographic variables of participants. All other included measurement tools are in Table 1, representing a complete list of correlates and outcomes.

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Table 1. Measurement tools.

https://doi.org/10.1371/journal.pone.0278271.t001

Results

Sample description

In total, 646 potential participants started the online survey. Of these, 347 dropped out during the survey, and a total number of n = 299 participants fully completed the online survey. The characteristics of the sample can be found in Table 2.

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Table 2. Characteristics of the sample.

https://doi.org/10.1371/journal.pone.0278271.t002

Factors associated with pre-loss grief

The regression analysis yielded a significant model (F(10,288) = 26.357, p < .001, see Table 3), of which five variables were significantly associated with pre-loss grief. A power analysis with G*Power 3.1. revealed a large sized effect for the prediction model of pre-loss grief (f2 = .92, α = .005, power = .80).

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Table 3. Multivariate regression analysis.

https://doi.org/10.1371/journal.pone.0278271.t003

Higher perceived depth of the relationship with the patient with cancer was associated with higher pre-loss grief (β = .365, p < .001). Moreover, more COVID-19 related fears (β = .141, p = .002) and a higher prognosis of death (β = .241, p < .001) were also associated with higher pre-loss grief. Higher emotion-focused coping strategies showed a negative relationship with pre-loss grief (β = -.320, p = < .001), while dysfunctional coping strategies showed a positive relationship with pre-loss grief (β = .281, p < .001). All other variables were not significantly related to pre-loss grief.

Discussion

This is, to our knowledge, the first study to investigate factors associated with pre-loss grief and preparedness during the COVID-19 pandemic in relatives of people with cancer. Results showed that helpful coping strategies (emotion-focused or problem-focused coping) showed a negative relationship with pre-loss grief and dysfunctional coping a positive relationship with pre-loss grief. On the other hand, helpful coping strategies showed a positive relationship with preparedness measures and dysfunctional coping strategies a negative relationship with preparedness measures. This is also in line with previous studies [2, 10] and demonstrates the need of including knowledge about different coping strategies in interventions.

Regarding attachment style, only an anxious attachment style was negatively associated with preparedness for caregiving. Contrary to previous studies [12, 16], results did not show a significant relationship between attachment style and pre-loss grief and attachment avoidance and preparedness for caregiving. However, Sörensen and colleagues’ [16] sample consisted of parents of college students, who did not have a loved one suffering from cancer, limiting comparability. Moreover, Pote and Wright [12] evaluated caregivers of individuals with dementia, assessing pre-loss grief with a questionnaire specifically designed for caregivers of people with dementia or Alzheimer’s disease. Relatives of cancer and dementia patients show dissimilarities in the experience of pre-loss grief [30], which may account for the found differences. Furthermore, attachment style may not play a role for preparedness for death, as results did not show a significant relationship and no further studies on these relationships exist.

Additionally, more COVID-19 related fears were associated with a higher level of pre-loss grief and preparedness for caregiving, but a lower level of preparedness for death. This suggests that the COVID-19 pandemic has a significant impact on the grieving and caregiving process before a loss and represents another stress factor that should be considered in patient care. Therefore, this is the first study to confirm previous theoretical assumptions about the negative effect of the COVID-19 pandemic on the grieving process [19, 20]. As COVID-19 related fears also emerged as a significant correlate for preparedness for death, it may further complicate preparation processes for the death of a loved one.

Furthermore, relatives with a worse health status showed higher levels in both preparedness measures, which is contrary to previous results [2, 15]. This could be due to the fact that previous studies assessed health status with continuous questionnaires for a variety of health variables, e.g., general health, depression or anxiety. In contrast, health status was assessed using a dichotomous variable in this study, only measuring whether or not relatives had a physical/mental illness or disability, therefore limiting comparability to previous studies. While relatives who have a physical or mental illness/disability may have higher preparedness for death and caregiving, this relationship may dependent on the severity of their illness or disability. To further explore the relationship between health status and pre-loss grief/preparedness measures, more studies are necessary.

Moreover, results regarding quality of relationship showed that a higher perceived depth [= importance of the relationship, see 27] of the relationship with the patient with cancer was associated with higher pre-loss grief and higher preparedness for caregiving. More conflicts in the relationship were associated with less preparedness for caregiving. While previous studies have shown ambivalent results, they differed in measurement tools for relationship quality, as scales for self-evaluation and social support, as well as general acquaintance measures were used or relationship quality was seen as part of the construct without using a quantitative measurement [12, 17, 18]. Therefore, this is the first study to demonstrate the differential effects of perceived depth, or in other words, importance of the relationship [27] and conflict on pre-loss grief and preparedness.

Lastly, this study found a positive relationship between relatives’ perceived poor prognosis of their loved one and pre-loss grief, as well as preparedness for death. This may be because the cognitive component of preparedness for death involves medical information about the patient, e.g., information on the prognosis [8]. Therefore, the information contained in the prognosis may be helpful for feeling prepared for the death. At the same time, relatives develop higher feelings of grief, the worse the prognosis of the patient with cancer. Therefore, pre-loss grief might be primarily relevant for relatives of patients with cancer with poor prognosis. For future studies, it might be interesting to explore the underlying mechanisms of these relationships.

The final models explain between 21 and 48% of variance, indicating a considerable influence of the related factors on the forewarning period. However, the cross-sectional design and exploratory analyses may limit the generalizability of results. Therefore, longitudinal studies should replicate findings with previously made hypotheses.

Conclusions

This study demonstrates the unique correlate models of pre-loss grief, preparedness for death, and preparedness for caregiving in relatives of people with cancer. Screening for pre-loss grief and preparedness as well as for associated characteristics (COVID-19 related fears, dysfunctional coping strategies, depth of the relationship, attachment style, prognosis for death of patient with cancer, health status) may help identify individuals at risk and provide targeted interventions. To understand the stability or change of pre-loss grief and preparedness over time, further research is needed.

Supporting information