Preparedness for caregiving and preparedness for death: Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care

Abstract The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness. Data was analyzed using descriptive statistics and Spearman correlations. Altogether 39 family caregivers participated. A significant association was found between preparedness for caregiving and preparedness for death. Received support and communication about the illness was associated with higher levels of preparedness for caregiving and death. This study contributes to evidence on the association between preparedness for caregiving and death, but also that communication and support employed by healthcare professionals could improve family caregiver preparedness and wellbeing.

Patients with advanced cancer are increasingly cared for at home, placing great responsibility on family caregivers who often provide substantial care and support, enabling the patient to stay and die at home (Parker et al., 2021;Rowland et al., 2017).Unfortunately, however, family caregivers commonly report being insufficiently prepared for caregiving (Funk et al., 2010;Wang et al., 2018) as well as for the impending death of the person cared for (Barker et al., 2017).
Preparedness for caregiving refers to a perceived readiness of providing physical care, emotional and existential support as well as dealing with the stresses of caregiving (Schumacher et al., 2007;Schumacher et al., 2008).Preparedness can result in feelings of reward and hope as well as less burden (Henriksson & Arestedt, 2013;Schumacher et al., 2008), thus it is seen as a protective factor in adapting to the caregiver situation both in short and long-term scenarios (Holm et al., 2016;Nielsen et al., 2017).Family caregivers who feel prepared for caregiving report a lower degree of anxiety, depression, and less often complicated grief (Henriksson & Arestedt, 2013).
Preparing to care for a person at the end of life has been described as an ongoing process, that also entail plans for a coming loss of the person cared for (Holm et al., 2015;Janze & Henriksson, 2014).Preparing for death includes having knowledge about the implications of advanced, incurable disease as well as being cognitively and emotionally aware (Hebert et al., 2009) that death can occur at any time; referred to as "awareness time" (Hauksdottir et al., 2010) or "forewarning" (Carr et al., 2001).In a study with 393 family caregivers to patients with advanced cancer, less than half reported feeling sufficiently prepared for death, including a combined cognitive and emotional preparedness (Wen et al., 2021).
A recent systematic review (Treml et al., 2021) reported that low perceived preparedness for death can be a risk factor for poor post-loss adjustment and can also be associated with issues such as prolonged grief, depressive symptoms, anxiety, and chronic pain.Most studies, however, have measured preparedness for death retrospectively (Coelho et al., 2020;Nielsen et al., 2016).
Palliative care should be provided for patients with advanced cancer, early or later in the illness trajectory and a core principle is to support family caregivers and promote quality of life (Radbruch et al., 2020).Enabling family caregivers to feel sufficiently prepared for caregiving and to prepare for the patient's impending death is crucial.This should be considered an achievable aim for healthcare professionals, as several studies have shown preparedness for caregiving, as possible to promote (Ahn et al., 2020;Becque et al., 2019;Bilgin & Ozdemir, 2022) and studies using qualitative methods have also indicated a relationship between preparedness for caregiving and preparedness for death (Henriksson & Andershed, 2007;Holm et al., 2015;Janze & Henriksson, 2014).However, further studies are needed to confirm this relationship and to better understand modifiable factors, by which healthcare professionals may support family caregivers' preparedness.
Hence, the aims of this study were to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer receiving specialized home care and (2) explore modifiable preparedness factors, such as communication and support.

Design
A cross-sectional study was conducted at five specialized home care services in Stockholm, Sweden.The services are staffed by multi-disciplinary teams including nurses, physicians, physiotherapists, occupational therapists, dieticians, and social workers.The services deliver 24-hour care, for patients with palliative care needs, a majority of whom have a cancer diagnosis.The care is provided in form of planned visits at a minimum once a week, up to several times/day, based on the needs of the patient.Ethical approval was provided by the Regional Ethical Review Board in Stockholm (2018Stockholm ( /1893-31;-31;2019-02242) and the Swedish Ethical Review Authority .

Procedure and participants
All the services participated as a recruitment base for a web-based intervention "Narstaende.se"(in English, "Family caregiver.com")(Tibell et al., 2022) aiming to promote preparedness for caregiving and death among family caregivers.The director of each home care service granted the first author, who is an oncologist, access to the medical records to identify patients.Eligible participants were family caregivers (!18 years) to patients (!18 years) with advanced, cancer and palliative care needs, cared for in specialized home care.The family caregiver was required to be able to speak and understand Swedish to be eligible for the study.Once identified, the patient and the family caregiver were provided written information followed by a phone call and if willing to participate was given a study code.Upon registration at the website, the family caregivers gave informed consent and answered an online baseline questionnaire administered directly on the website, where after accessing "Narstaende.se."

Data collection and study variables
For the present study, data from the baseline questionnaire, prior to the start of the intervention, was used.The questionnaire included socio-demographics, a validated instrument to assess preparedness for caregiving, as well as single items, to assess preparedness for death, and modifiable factors regarding communication and support.The single items derive from experiences from psychologists', nurses, and physicians, researchers, and bereaved family members.They have been validated face-to-face and used in earlier Swedish nation-wide studies, although only for bereaved family members (Hauksdottir et al., 2010;Jonasson et al., 2011;Omerov et al., 2013;Valdimarsdottir et al., 2004).These are outlined in more detail below.
The Preparedness for Caregiving Scale (PCS), consisting of eight items, was used to measure preparedness for caregiving.The items cover both practical and emotional aspects of the family caregivers perceived readiness for the caregiving role and is answered on a five-point Likert-type response scale, ranging from "Not at all prepared" (0) to "Very well prepared" (4).The total score thus range between 0 and 32.The PCS scale has demonstrated good validity and reliability among family caregivers in a specialized home care context in Sweden (Henriksson et al., 2012;Henriksson et al., 2015;Hudson & Hayman-White, 2006).Internal consistency, assessed with ordinal alpha, was good (a ¼ 0.96, CI 95% ¼ 0.89, 0.99).
Preparedness for death was measured by 6 single items.The items cover cognitive and emotional understanding about (a) incurable illness, (b) risk of rapid impairment of the illness, and (c) readiness for limited survival time ("No," "Yes to some extent," "Yes to great extent," and "Yes fully").For the present study, an index value was also created by summarizing the item responses giving a possible total score between 6 and 24.The index value was supported by moderate to high inter-item polychoric correlations (q ¼ 0.43 À 0.95), high item-total polyserial correlations, adjusted for overlaps (q ¼ 0.74 À 0.95), and high ordinal alpha (a ¼ 0.94, CI 95% ¼ 0.82, 0.99) (Table 1).
Modifiable factors consisted of study specific single items which were sorted into sections related to communication and support.Communication was measured through single items about conversation with healthcare professionals concerning incurable illness (yes or no) as well as conversations last month about prognosis ("No," "Once," "2-3 times," and "4 or more times"), conversation with the patient last month about the illness being incurable ("No," "No but earlier during illness," "Yes"), as well as conversation with the patient about how to manage in the future ("No," "Yes to some extent," "Yes to great extent," and "Yes fully").
Support was measured through questions about perceived support from physicians, nurses or other healthcare professionals, and support through counseling with social workers or psychologists or emotional support from family and friends ("No," "Occasionally," "1-2 times a week," "Every day," "Repeatedly daily").

Statistical analysis
Descriptive statistics were used to present demographic data and study variables.Medians (Mdn) and quartiles (q1-q3) were used to present continuous and ordered categorical variables while frequencies were used to present non-ordered categorical variables.
To explore associations between preparedness for caregiving and preparedness for death as well as associations between modifiable factors and preparedness, Spearman correlations with bootstrapped confidence intervals (bias-corrected and accelerated bootstrap based on 2000 replications) were used.
Statistical significance was set at p < 0.05.SPSS version 27.0 (IBM Corp., Armonk, NY, USA) was used to calculate descriptive statistics and all other analyses were conducted in R version 4.2.2 (R Foundation for Statistical Computing, Vienna, Austria) including the following packages: boot 1.3-28, correlation 0.83, psych 2.2.9, summary tools 1.0.1.

Participant characteristics
Altogether, 53 out of 97 spouses contacted by phone were interested in participating in the web-based intervention and in total 39 spousal family caregivers answered the baseline questionnaire.The sample included 26 (67%) women and 13 men (33%).The participants were between 27 and 80 years (Mdn ¼ 61, q1-q3 ¼ 54-71) Almost half, 19 (49%) were employed, out of whom 12 (63%) had taken part or full-time off from work financed by the social insurance system to participate in care.Caregiving tasks was provided daily by 25 (64%) of the participants, while 6 (15%) were not involved in caregiving.All patients had a cancer or hematological malignancy (Table 2).

Associations between preparedness for caregiving and preparedness for death
Higher levels of preparedness for caregiving were significantly associated with higher levels of preparedness for death (r s ¼ 0.51, CI 95% ¼ 0.23 À 0.72).The same associations were shown for all six items measuring preparedness for death (r s ¼ 0.40-0.50).The associations between preparedness for caregiving and death were stronger for the cognitive than the emotional aspects regarding items about understanding the risk of rapid impairment (r s ¼ 0.45 vs. 0.40) and items about preparedness for limited survival time (r s ¼ 0.50 vs. 0.42).Concerning the participants' understanding about incurable illness, a stronger association was shown for the emotional aspect compared to the cognitive aspect (r s ¼ 0.45 vs. 0.42) (Table 3).

Associations of communication and support with preparedness for caregiving and preparedness for death
Communication about incurable illness between healthcare professionals (nurses/physicians) and/or the patient was associated with higher levels of preparedness for caregiving (r s ¼ 0.39 and 0.36, p < 0.05) and preparedness for death (r s ¼ 0.52 and 0.47, p < 0.05).Communication with the patient about future life was only significantly associated with preparedness for death (r s ¼ 0.39, p < 0.05).
Support from healthcare professionals (nurses/physicians) was significantly associated with both preparedness for caregiving and preparedness for death (r s ¼ 0.34 and 0.43, p < 0.05).No significant associations were found between support from family, friends, professional counselor, or social worker with preparedness for caregiving or death (Table 4).

Discussion
This cross-sectional study demonstrated a statistically significant association between preparedness for caregiving and preparedness for death in family caregivers of patients with advanced cancer in specialized home care.Communication with healthcare professionals and/or with the patient was associated with higher levels of preparedness for both caregiving and death.Further, received support from healthcare professionals was significantly associated with preparedness for both caregiving and death.
To the best of our knowledge, this is the first study to demonstrate a significant statistical association between preparedness for caregiving and preparedness for death.However, a possible connection has been described in earlier studies using qualitative methods   (Henriksson & Andershed, 2007;Holm et al., 2015;Janze & Henriksson, 2014).Family caregivers have described in interviews that preparing for caregiving meant also having to prepare for the fact that the person they cared for will die due to incurable illness.The family caregivers went through multiple transitions, eventually resulting in "preparing for caregiving in awareness of death" (Janze & Henriksson, 2014).Preparing for caregiving, was, beside the practical and supportive tasks, perceived as an emotional challenge with thoughts about dying, death and future life (Janze & Henriksson, 2014) This finding is relevant to Holm et al. (2015) assertion that preparedness incorporated preparing for the challenges of caregiving, which is an ongoing process, consisting of understanding and managing the current situation and at the same time planning for the forthcoming death of the person cared for.
The present study acknowledges the importance of communication between healthcare professionals and family caregivers about incurable illness to promote preparedness.In end-of-life care, such communication is vital (Anderson et al., 2019;Steinhauser et al., 2000) and family caregivers often value communication about prognosis and future care (Steinhauser et al., 2015;Virdun et al., 2015).Clear, consistent, and reliable communication is needed to be able to prepare (Hebert et al., 2009;Witkamp et al., 2015).There might be a difference of what prognostic information health care professionals intended to provide and what was perceived and understood by family caregivers (Witkamp et al., 2015).Therefore, it is of importance that prognostic disclosure is given in simple and direct language, balancing hope, and honesty, and to make sure that family caregivers understand the information as intended (Bernacki & Block, 2014;Witkamp et al., 2015).Vague information diminishes the chance for practical planning, such as work situation or finances, before the impending death (Janze & Henriksson, 2014) and also denies making meaningful plans for the present (MacKenzie & Lasota, 2020).In a bereaved population, one out of four reported believing that lack of information concerning the prognosis and impending death hindered them from preparing for the loss (Barry & Prigerson, 2002).Although responses are variable (Blackhall et al., 2001) most family caregivers prefer prompt disclosure about incurable illness (Dahlstrand et al., 2008).End-of-life conversations, preferably a series of conversations, should be seen as a responsibility of healthcare professionals and a right for both patients and families (Sallnow et al., 2022).However, as not all caregivers want full disclosure, prognostic information needs to be individualized and it may be challenging for healthcare professionals to distinguish which patients and/or family caregivers who do not want or may not benefit from open communication (Dahlstrand et al., 2008).Sense of failure or removal of hope might hinder this kind of communication (Sallnow et al., 2022;Steinhauser et al., 2000).
Further, the present study, also found that communication between the family caregiver and the patient was associated with preparedness for caregiving and/or preparedness for death.This is in line with earlier findings showing that preparedness for death might be promoted by conversations with one's spouse about incurable illness as well as future life (Hauksdottir et al., 2010) and that poor communication within the family can be associated with low family caregiver preparedness (Yamashita et al., 2017).Healthcare professionals should encourage the patient and the family caregiver to share concerns with each other (Jung & Matthews, 2021), in order to potentially reduce feelings of isolation and distress, and increase intimacy (Bernacki & Block, 2014;Murray et al., 2015).Conversations near death may provide opportunities to reach closure, permission to move on in life after the patient s death (Keeley, 2017), and sharing concerns may also lead to fewer regrets after the patient s death (Jung & Matthews, 2021).It is common that both patients and family caregivers use protective buffering, hide emotions and/or withhold negative information concerning illness and prognosis, when coping with advanced cancer (Otto et al., 2021).Difficulties are often experienced when it comes to sharing thoughts and feelings, maybe due to a lack of preparedness for engaging in such.It could also be a result of feeling lack of words, competence and confidence (You et al., 2017).Avoidance of sharing thoughts and feelings has been found to be associated with impaired quality of life and mental health (Langer et al., 2007;Mack et al., 2010;Manne et al., 2007;Wright et al., 2008) and can lead to a sense of isolation between patient and families (Murray et al., 2015).However, discussing personal fears in relation to end of life might be the hardest part of preparedness, as death is the most fundamental of human fears (Fleming et al., 2016).Death being imminent raises questions about what life has meant and what s to come (Steinhauser et al., 2001).This may partly explain why no associations were found between neither preparedness for caregiving or death and support from family and friends.It might have been too difficult to engage in such conversations.Information about incurable illness can however improve quality of life and positively impact and facilitate communication within the family (Winterling et al., 2004).
Awareness of incurable illness may have a significant effect on breaking the silence in end-of-life communication between family caregivers and patients, even though, details of impending death seem to be rarely discussed (Xu et al., 2022).Most people do not talk explicitly about imminent death, however of those who do, only a few regret doing so, while many wished they had talked more (Mori et al., 2017).As communication about death has its challenges (Keeley & Generous, 2017), family caregivers may need support from healthcare professionals to manage these conversations (Otani et al., 2017;Zaider & Kissane, 2009).According to the present study, support from healthcare professionals was significantly associated with preparedness for both caregiving and death.Andershed (2020) suggests that support, similar to the core value of palliative care, should be based on physical, psychological, social, and existential perspectives.Feelings of being supported can lead to increased sense of hope, comfort, safety, coherence and meaning (Andershed, 2020).It is important to be able to rely on the person giving the support, sensing a depth of engagement, and a feeling close to friendship.The overall meaning of support has been described by family caregivers as "sensing togetherness" (Stoltz, 2006).
Importantly, having access to support, is not equivalent with feeling supported (Hibberd et al., 2010).To feel adequately supported, family caregivers should receive support from healthcare professionals based on their individual needs both during the illness and after the patient's death (Breen et al., 2014).Family caregivers may also feel supported when healthcare professionals care for and meet the needs of the patient (O'Sullivan et al., 2021).
In this study there are several limitations to consider.No a priori sample size calculation was made, and the sample size is small.Neither do we have data concerning family caregivers who were invited but chose not to take part of the intervention, hence, we may have included a selected group of participants.Further, the non-probability sampling limits the generalizability of our results, and the cross-sectional design allows no conclusions regarding the causal relationship between the variables.
Other limitations relate to the study measures.To measure preparedness for death, we used six items that have been validated and used in previous studies.In the present study, these items were summed to an index value.To justify the index, simple psychometric analyses were conducted, all based on polychoric and polyserial correlations which are well suitable for ordinal data.Although these analyses showed excellent homogeneity and internal consistency, unidimensionality was not evaluated due to the limited sample size.The limitations can however be seen as somewhat outweighed by the novelty and importance of this topic.
This study demonstrated an association between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer in a specialized home care context.Furthermore, it provides additional evidence that communication and support by healthcare professionals are of importance for family caregivers' preparedness for caregiving and death.The study also contributes to knowledge about the impact of communication related to incurable illness and the future between the family caregiver and the patient.Supportive interventions have shown improvement in caregivers' preparedness.This study indicates that by improving preparedness for caregiving also preparedness for death may improve.

Table 1 .
Item statistics for preparedness for death index PDI (n ¼ 39).
a Item-total correlation based on polyserial correlations, corrected for overlap and scale reliability.

Table 3 .
Associations between preparedness for caregiving and preparedness for death (n ¼ 39).

Table 4 .
Factors associated with Preparedness for Caregiving Scale and Preparedness for Death Index, based on Spearman's correlation coefficients (n ¼ 39).