Background

Losing a close other to cancer is an incisive experience that occurs after a long illness course and intense family caregiving [1, 2]. Families’ experience of caregiving, communication about end-of-life, and support received as a family impact on their grief experience and psychosocial health [3,4,5,6], whereas families’ functioning and preparedness for death is associated with complicated grief responses [7, 8]. To promote family resilience and well-being over time and to prevent adverse family outcomes, there is a need to focus cancer care on the family as a unit to address their needs, soften their suffering, increase their preparedness for the loss, and facilitate living with the loss [9,10,11,12]. Evidence-based recommendations include assessing and addressing families’ needs early on, offering practical and emotional support to enable preferred caregiving roles, providing information and communication about end-of-life, promoting families’ preparedness for loss and ability to cope with death and dying as a family, offering health-promoting follow-up care to strengthen family resilience and well-being, and identifying and referring those at risk for complicated courses of bereavement to specialist services [12,13,14,15,16,17].

Despite the availability of evidence-based guidance [13, 14, 16, 17], patients and families may not receive the attention and support they need as a relational family unit that is about to experience a profound disruption by death [18,19,20,21]. Family members’ and cancer care professionals’ focus is often on the person with advanced cancer and care to family members usually ends with the patient’s death [16, 17, 22]. This means that families may not voice their own concerns and needs [23, 24]. At the same time health professionals may not recognize and proactively address families’ role and needs due to a lack of awareness, time, or priority-setting [25, 26]. Improvement in end-of-life and bereavement support to families affected by cancer has therefore been called for [27]. A clear understanding of the quality of care and its ability to address family needs is required. As part of the BEST CARE research project (Guideline-based end-of-life and BEreavement SupporT in Cancer CARE, https://osf.io/j4kfh), we assessed the type and quality of support that families received during end-of-life and in bereavement following the loss of a close other to cancer and explored their (un)met needs and bereavement outcomes.

Methods

A cross-sectional survey was conducted with family members bereaved by cancer. The aims of this study were, first, to explore the quality of support that bereaved family members received at the end-of-life and in bereavement, the fulfillment of their needs during bereavement, and bereavement and health outcomes; second, to examine differences in these outcomes between different places of death (i.e., health institution vs. home care); and third, to examine the relationship between quality of support and bereavement outcomes.

Setting and participants

The study was carried out in four hospitals and three home palliative care services in an urban area in German-speaking Switzerland. Family members were eligible to take part if they had been bereaved due to cancer for two to six months, had been a primary support person or carer, and were at least 18 years old. Family members who did not provide informed consent, did not possess sufficient German language skills to complete the questionnaire, were not cognitively able to understand or participate in the study, or had a self-reported mental health illness before their experience of loss, were excluded.

Recruitment and data collection

Eligible participants were prospectively invited to participate by a clinician or service manager within the available recruitment period lasting from December 2021 to September 2022. First, they were informed about the study and received a study flyer. If they agreed, their contact details were communicated to the research team, who sent out a study information pack by email with a personalized link to the online questionnaire (REDcap; https://www.project-redcap.org), or by mail with a paper-pencil questionnaire. Participants were able to complete the questionnaire at a time of their convenience in their own home. Online questionnaires could be interrupted and then continued at a later time. If necessary, family members were reminded by phone or by email at three-week intervals.

The questionnaire had three sections focusing on [1] quality of support received during end-of-life and bereavement (56 items), [2] needs during bereavement (20 items), and [3] bereavement and health outcomes (17 items). Participants rated the questionnaire to be mostly understandable and easy to complete (mdn = 4, score range: 1 = totally disagree to 5 = totally agree, n = 34). They indicated that the length of the questionnaire was rather appropriate in terms of completion time (mdn = 4, score range: 1 = totally disagree to 5 = totally agree, n = 33). Psychometrically validated rating scales were used. In addition, three self-developed rating scales on self-perceived health were used after review for validity by researchers from nursing, bereavement care, family health, and psychology. Some of the measures were translated from English into German with permission using a forward-backward translation procedure [28] (see Table 1). Participating family members provided their demographics and proxy data on the demographics of the deceased and the circumstances of their death. A research assistant entered paper-pencil questionnaires into REDcap via direct entry forms.

Table 1 Overview of study endpoints and measures
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Study endpoints

Quality of support received as a family

The support families received from health professionals was assessed by the 14-item German version of the “ICEland Family Perceived Support Questionnaire” (ICE-FPSQ). It includes two subscales: “cognitive support” (5 items) and “emotional support” (9 items), which were rated on a 5-point Likert-type scale from 1 = almost never to 5 = almost always, resulting in a sum score of 14–70 overall, 5–25 for the cognitive, and 5–45 for the emotional support scale. This questionnaire showed high internal consistency (Cronbach’s above > 0.86) [29, 30].

In addition, we assessed which groups of health professionals (i.e., nurses, physicians, medicinal assistants, chaplains, therapists, social workers, and others) provided the support.

Quality of end-of-life care

To assess satisfaction with the end-of-life care, we used the 24-item “Canadian Health Care Evaluation Project - Bereavement Questionnaire” (CANHELP). Items were scored on a 5-point Likert-type scale ranging from 1 = totally disagree to 5 = totally agree. The CANHELP has high internal consistency, with a Cronbach’s alpha of 0.93 [31].

Quality of bereavement support

To obtain information on the type and quality of bereavement support, we adopted a selection of close-ended questions from the “Evaluation of Grief Support Services” (EGGS) by the National Hospice and Palliative Care Organization with permission [32], and one from a previous study by Tracey and Miller [33]. Questions pertained to grief information (i.e. “Were the following communicated to you after the death?”, “How useful was the information provided to you about…?”), follow-up support (e.g., “Was the number of telephone calls you received too few, about right, too many?”, “When you called for information or support, how did we do in getting you help as soon as you needed it?”), and questions about the overall quality of the service (i.e., “After the death, how well would you say our grief support services met your needs?”) and the skills of the person delivering the support (e.g., “How would you describe the skills of the person who provided grief support to you? S/he listened to me, understood me, was honest, was helpful” etc.).

Fulfillment of needs

To assess the (un)met needs among bereaved family members, we used the 20-item “Needs Assessment of Family Caregivers– Bereaved to Cancer” (NAFC-BvC). Each needsitem was rated twice on a 5-point Likert-type scale ranging from 0 = not at all to 4 = extremely, first for their importance and then for their satisfaction. Scores were calculated by multiplying the importance rating by the (reversed) satisfaction rating (scorerange: 0–16). The NAFC-BvC showed satisfactory internal consistency, with a Cronbach’s alpha of > 0.76 [34].

Coping

To measure coping with loss as proposed in the “Model of Meaning Reconstruction” [35, 36], three 5-point Likert-type scale questions were asked: “How much sense would you say have you made of the loss?” (i.e., 1 = no sense, 5 = a good deal of sense), “Despite the loss, have you been able to find any benefit from your experience of the loss?” (i.e., 1 = no benefit, 5 = great benefit), and “Do you feel that you are different, or that your sense of identity has changed, as a result of the loss?” (i.e., 1 = no different, 5 = very different).

Resilience

The 6-item German version of the “Brief Resilience Scale” (BRS-6) was used to examine the individual ability to recover from stress following the loss. Items were rated on a 5-point Likert-type scale ranging from 1 = strongly disagree to 5 = strongly agree. The BRS-6 has sufficient internal consistency, with a Cronbach’s alpha of 0.85 [37, 38].

Grief intensity

The 5-item “Brief Grief Questionnaire” (BGQ-5) was used to assess grief intensity. Items were scored on a 3-point Likert-type scale ranging from 0 = not all to 2 = a lot. This questionnaire exhibits sufficient internal consistency with a Cronbach’s alpha of 0.75 [39].

Self-perceived health

Three self-developed visual rating scales were used to assess self-perceived health, sense of well-being, and self-perceived stress: “How is your current health?” (i.e., 0 = low state of health to 100 = high state of health), “How is your current well-being?” (i.e., 0 = low well-being to 100 = high well-being), “How is your current level of stress?” (i.e., 0 = low stress-level to 100 = high stress-level).

Data analysis

All rating variables were tested for normality using the Kolmogorov-Smirnov test and the Shapiro-Wilk test. Non-parametric statistical methods were used due to non-normal distribution and modest sample sizes to assess differences between the two places of death (two-tailed Mann-Whitney-U-test). To assess relationships between quality of support and bereavement outcomes, Spearman’s correlation was used and effect sizes were interpreted according to Cohen [40] with r = 0.10 indicating a small effect, r = 0.30 indicating a medium effect, and r = 0.50 indicating a large effect. If this relationship was significant, a regression analysis was performed to control for the potential influence of family member age, gender, relationship to deceased (partner / spouse vs. other), and time since death, as described in supplementary file 1. A p-value of < 0.05 was considered statistically significant. The statistical analyses were conducted using IBM SPSS version 28 and Stata/SE version 18 (regression analyses and approximations within scatterplots).

Ethical considerations

The responsible Ethics Committee waived the need for approval (Req-2021-01054). Participants provided their informed consent at the beginning of the questionnaire.

Results

Participant characteristics

Of the 85 family members who received a questionnaire, 35 returned it (11 in electronic and 24 in written form, response rate of 41%). Nearly half of the participants were female (45.7%) (Table 2). Most of the participants were spouses (77.1%) or adult children (17.1%) of the deceased. The participants had lost their close other on average 3.5 months prior to a variety of cancer types. The deceased had been first diagnosed on average five years prior. Two thirds died at home. For most participants, the loss was expected (92.9%), and it predominantly occurred at the place preferred by the deceased (77.1%).

Table 2 Characteristics of family members and the deceased
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Quality of support

The quality of support that families received was rated with a median score of 50.0 (ICE-FPSQ, score range: 14–70). More specifically, family members rated the received cognitive support with a median score of 20.0 (ICE-FPSQ Cognitive support, score range: 5–25) and the emotional support with a median score of 34.0 (ICE-FPSQ Emotional support, score range: 9–45). Families whose close other had died at home on average had higher results in all three scores than those whose close other had died in an institution. However, these tendencies were not statistically significant (see Table 3).

Table 3 Quality of support, needs, bereavement and health outcomes
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Bereaved family members rated the quality of end-of-life care with a median score of 4.2 (CANHELP, score range: 1–5), with no statistically significant difference between places of death.

Families reported to have received the following types of bereavement care: acknowledgement of their individual grief experience (78.8%, n = 33), validation of grief as a normal reaction (65.6%, n = 32), information on grief and loss (61.8%, n = 34), and follow-up calls (51.6%, n = 34). Availability of information on coping with grief (57.6%, n = 33) and memorial services (48.3%, n = 29) were considered helpful by about half of the families, information on follow-up visits (33.3%, n = 30) and support groups (34.4%, n = 32) were less often seen as helpful. More than half of the families rated grief support and educational information as sensitive to their cultural and/or spiritual background (73.1%, n = 26). Grief services were perceived to match personal needs (74.1%, n = 27), and were experienced as compassionate (89.7%, n = 29).

On average, families received support from four different professional groups, most often from nurses (97.1, n = 34), followed by medical assistants (80.0%, n = 28), physicians (52.9%, n = 18), and chaplains (44.1%, n = 15). A majority (at least n = 24–25, 89.3%) perceived providers to be highly skilled in listening, showing understanding, and in being trustful, accepting, honest, and helpful.

Needs

Most of the assessed needs were reported as fulfilled (NAFC-BvC; score range: 0–16) in the sense of low relevance or complete satisfaction (Table 3). The least fulfilled needs were “taking part in your usual social / recreational activities” (item 1), “being satisfied with your relationship with family members / friends” (item 10), “taking care of your own health” (item 11), “dealing with your emotional distress” (item 13), and “getting together with family / friends” (item 16). There were no statistically significant differences in scores between places of death.

Bereavement and health outcomes

In terms of coping, bereaved family members reported low levels of meaning-making of the loss (mdn = 1.5, score range:1–5) and of identity change (mdn = 2.0, score range: 1–5). In contrast, families rated their benefit-finding as high (mdn = 4.0, score range: 1–5). No statistically significant differences between places of death were found.

On average, bereaved families showed a median score of 3.5 in their resilience response (BRS, score range: 1–5). There was no significant difference across places of death.

Grief intensity was rated with medium values (mdn = 4.0, score range: 0–10). No statistical significance difference between places of death was found.

Family members indicated their self-perceived health with a median score of 81.0 (score range: 0-100), their sense of well-being with a median score of 66.0 (score range: 0-100), and their self-perceived stress with median score of 40.0 (score range: 0-100) (see Table 3).

Relationships between quality of support and bereavement outcomes

Statistically significant, positive correlations were found between quality of end-of-life care (CANHELP) and resilience (BRS-6) (r = 0.49, p = 0.015, n = 25), and between quality of end-of-life care and benefit-finding (r = 0.47, p = 0.019, n = 25) (see Table 4; Fig. 1 / Supplementary file 2 for scatterplots). These relationships proved to be robust when potential influencers were controlled for using multiple regression analyses (see Table 5). The quality of end-of-life care mean score (CANHELP; range 2.2-5 in the regression sample, n = 25) had a positive relationship with the benefit-finding (range 1–5) that was nearly 1:1 (incremental effect = 0.933, p = 0.025), i.e. an increase in quality of end-of-life care mean score by 1 corresponds to an increase in the benefit-finding by 0.933 on average. The quality of end-of-life care mean score (CANHELP) also had a positive relationship with the resilience mean score (BRS-6; range 2.3-5 in the regression sample, n = 25), whereby an increase in the quality of end-of-life score by 1 implies on average an increase in the resilience score by 0.426 (p = 0.012). Family member age was negatively associated with resilience (incremental effect per year = -0.032, p = 0.004).

Table 4 Relationship between quality of support and bereavement outcomes (Spearman’s correlation coefficient)
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Fig. 1
figure 1

Scatterplots of coping (benefit-finding) vs. quality of end-of-life care and resilience (BRS-6) vs. quality of end-of-life care

Note. Added to each scatterplot are a third-degree fractional polynomial approximation (generalized linear model, GLM) and a linear approximation with a 95% confidence interval. Scatterplots of all pairings of quality of support vs. bereavement outcomes are provided in Supplementary file2.

CANHELP = “CANadian Health Care EvaLuation Project– Bereavement version”, score range: 1–5, high score = high satisfaction in EoL care.

BRS-6 = “Brief Resilience Scale”, score range: 1–5; high score = high resilience.

EOL = End-of-Life Care.

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Table 5 Fractional logistic regression models of benefit-finding and resilience (n = 25)
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Discussion

This cross-sectional study with a small sample of family members recently bereaved due to cancer found that families are mostly satisfied with end-of-life care. About two thirds indicated to receive bereavement support reflective of evidence-based recommendations, such as acknowledgement, validation, and information on dying, grief and available support [41]. Support was received from many different health professionals who had– according to family members high interpersonal skills [42, 43], with nurses and medical office assistants being a core support source for them.

Needs related to family togetherness and relationships, social activities, self-care, and dealing with emotional stress remained most often unmet, reinforcing the need to better support families across settings [9, 18, 44]. Our study shows that families felt less well supported, particularly in relation to their cognitive dimensions (i.e., information, education, reflection opportunities within the family), which has also been previously shown in cancer care setting [18, 45].

We observed some statistically non-significant differences between places of death. Those whose close other had died at home seemed to feel better supported as a family unit than those whose close other had died in hospital or another institutional setting. At the same time, families indicated to have higher unmet needs related to their caregiving role, such as reorganization of roles, getting help from others, dealing with lifestyle changes, or emotional distress, compared to those whose close other died in an institution [11, 46]. In contrast, getting together as a family, navigating the healthcare system, and getting legal paperwork done were more prominent unmet needs among those whose close other died in a hospital. Given the small sample size and low statistical power, these findings need to be interpreted with caution, but suggest that support needs may differ according to place of death. Larger studies with representative samples are needed to verify findings within a cancer care context, potentially extending to other life-limiting illnesses. Overall, a focus on the family as a relational system with support needs related to family management of caregiving, loss, and bereavement, in addition to individual foci on patient or family members, is called for [23, 45, 47,48,49,50].

As previously reported, we also identified an association between high satisfaction with end-of-life support with resilience and benefit-finding, which stresses the importance of quality end-of-life care [3, 7, 8, 51,52,53]. Higher age was associated with lower resilience. Participants indicated moderate grief intensity, high resilience, and benefit-finding. Many family members reported lower levels of meaning-making of the loss, which may be due to the fact that they participated in the study within the first months after their loss [54, 55]. Those caring for their dying family member at home indicated higher stress-levels than those whose close other died in institution, which may be related to the burden of care [4, 8].

Study limitations

Our study is limited by a small, non-representative sample. Partners and those with home care were overrepresented compared to the general population. It is possible that participants represent a more satisfied and resilient group among bereaved family members who are well able to live with their loss in close interactions with their social network [56]. The recruitment of participants in a small geographical area and the limited diversity of the study participants might have introduced a selection bias that may affect the generalizability of the results. Due to low statistical power, lack of statistical significance does not amount to sufficient evidence of the absence of an effect / difference. While we mostly used psychometrically validated instruments, we also relied on three self-developed questions and non-validated German versions. Hence, our findings need to be interpreted with caution. Nevertheless, this cross-sectional observational study offers important insights about the actual quality of support in end-of-life and bereavement care, state of health, and (un)met needs perceived from bereaved family members.

Conclusion

This study reveals high satisfaction with end-of-life support and needs fulfillment based on a small sample of family members recently bereaved to cancer, which is associated with resilience and benefit-finding. The perception of the quality of bereavement care received as a family unit by health professionals in general and during bereavement is more modest, particularly for those whose close other died in an institutional setting such as hospital, suggesting a need for better support structures and care provided by interprofessional teams. While our study focuses on families bereaved due to cancer, our findings may have relevance for other populations, such as families bereaved following a persistent illness. Study findings suggest that improvements should focus on ensuring care that supports the family as a unit and enables togetherness, mutual reflection, meaningful relationships, strong support networks, preparedness for death, family resilience, and benefit-finding. Based on this survey, the quality of and specific needs for bereavement support are less conclusive, partly due to measurement issues, and require further investigation with representative samples to better understand quality of bereavement care [57].