Bereavement Risk Screening: A Pathway to Psychosocial Oncology Care

Abstract

Objective:

This qualitative study sought to obtain feedback from stakeholder cancer caregivers and bereaved family members on the implementation of bereavement risk screening in oncology.

Methods:

Semi-structured interviews were conducted with 38 family members of patients with advanced cancer (n=12) and bereaved family members (n=26) on when and how to effectively implement bereavement risk screening. Data was analyzed using thematic analysis.

Results:

Many participants indicated that they would be open to completing a self-report screening measure before and after the patient’s death. Several suggested screening at multiple timepoints and the importance of follow-up. Participants viewed screening as an opportunity to connect to psychosocial support.

Conclusions:

The findings suggest that family members appear supportive of sensitively-approached bereavement risk screening before and after a patient’s death as an important component of quality psychosocial care. To optimize implementation, bereavement risk screening would involve screening at multiple timepoints and include follow-up. Findings suggest standardized risk screening using a brief, validated self-report tool would be a pragmatic approach to increasing access to bereavement care.

Background

Bereavement support is an integral part of cancer care, yet, resources to provide such care are generally limited in oncology settings. When a patient dies, there is often an abrupt discontinuation of contact with the treatment team and insufficient, unstandardized, and impersonal bereavement follow-up.(1, 2) While institutions and practices may offer bereavement services such as groups or counseling, there is significant variability in the availability of services and outreach. Those who struggle the most tend to face barriers to accessing care, often “falling through the cracks.”(3-5) It is therefore critical to identify those most in need of support to facilitate care coordination.(5, 6) Understanding bereaved family members’ risk for poor outcomes may promote more efficient allocation of limited resources and contribute to a culture change prioritizing continuity of family-centered care.

One way of identifying those in need of professional support is to assess family members of patients with advanced cancer for risk factors associated with mental health challenges in bereavement, including prolonged grief,(7) depression,(8) and posttraumatic stress symptoms.(9) Given that higher risk individuals often report the most unmet need,(10, 11) bereavement resources might be best allocated to those who are most distressed. Numerous factors have been empirically identified, including background (e.g., dependency on the deceased, multiple losses), illness/death-related (e.g., witnessing intensive medical interventions, perceiving the death as traumatic) and bereavement-related factors (e.g., regret, isolation).(12-14)

Although bereavement risk screening has repeatedly been highlighted as an important component of optimal care,(1, 5, 6) it has not been consistently implemented by palliative care or oncology services,(2, 15) largely because screening by clinicians takes time and resources, (16, 17) may rely on subjective impressions, and be unreliable.(18) A brief self-report screening tool would allow screening to become a standard of care without taxing resources. Existing self-report bereavement risk assessments(19, 20) have not been widely used or validated using patient-reported outcomes methods (PRO),(21) such as systematically obtaining expert and respondent feedback. Using such stakeholder input is becoming a standard in the development and implementation of psychosocial assessments and interventions in oncology(22) and is critical in bereavement screening to ensure measure items and implementation procedures are sensitive to the needs of family members.

We therefore developed a self-report bereavement screening tool, the Bereavement Risk Inventory and Screening Questionnaire (BRISQ), using well-established PRO methods(23) (see Roberts et al.(14) for measure development details). The purpose of this article is to describe qualitative family stakeholder feedback on implementing bereavement risk screening in an advanced cancer context and improving access to bereavement care in oncology settings.

Method

Participants

Spouses/partners, parents, and adult children of patients with advanced cancer (pre-loss) and individuals who lost a parent, child or spouse/partner within 2 months to 1 year (post-loss) were recruited for the study through self-selection and referral by palliative care and psychosocial clinicians. Two recruitment sites in a large urban setting were used: a tertiary cancer center and a hospital with inpatient hospice care. Purposive sampling(24, 25) was utilized to accrue a diverse sample with respect to kinship, pre- and post-loss, age, race/ethnicity, gender, and sexual orientation.

Measures

Background Questionnaire.

Basic demographics and loss characteristics were assessed.

BRISQ.

The BRISQ is a self-report bereavement screening tool developed in a prior study.(14) Preliminary versions include a 34-item pre-loss (BRISQ-P) and 38-item post-loss (BRISQ-B) format. These assess three risk factor categories: background (e.g., To what extent have you had periods of depression, anxiety, or other emotional or mental health concerns in your life?), illness/death-related (e.g., Have you witnessed any medical procedures during —’s illness that you believe were unnecessary or extreme?), and bereavement-related (e.g., Do you feel guilty about anything related to your relationship with —, or to his or her medical care, or death?) risk factors. Additional items are detailed in our prior publications.(14, 26) The versions are nearly identical except the BRISQ-P refers to illness rather than death, and the BRISQ-B includes four additional items related to bereavement experiences. Both take approximately 5-10 minutes to complete. Each item has a corresponding 5-point Likert-type scale, with anchors relevant to the question language.

Semi-structured Cognitive Interview.

A semi-structured interview guide was used to conduct cognitive interviewing, a well-accepted method of qualitatively assessing comprehension and acceptability of measure items.(21) In addition to questions about the BRISQ, the interview consisted of broad questions on when screening should occur, openness to engaging in screening during difficult times, who should review screener responses, and impressions about receptivity of other family members to screening.

Procedure

Following completion of informed consent on this IRB-approved study (protocol #15-095, ClinicalTrials.gov Identifier: NCT02455505), participants completed the BRISQ, followed by the interview. Interviews were conducted by the first author (KR; at the time a clinical psychology doctoral candidate with training in psycho-oncology, bereavement, and qualitative research) and a Master’s level research assistant (GJ; trained in psychology and as an end-of-life doula, supervised by the first and senior authors). Interview coding occurred concurrent to recruitment. Two waves of interviews were conducted. Feedback on items from Wave 1 interviews (n=22) was used to modify the BRISQ administered in Wave 2 (n=16), but the interview guide otherwise remained the same. Participants were offered $50 for their effort.

The interviews were transcribed by a secure transcription company and analyzed using Atlas.ti-Version 7.5.13.

Data Analysis

This study was part of a larger study to develop the BRISQ. Only the qualitative feedback on implementing bereavement risk screening is presented. To ensure analytic rigor, the Consolidated Criteria for Reporting Qualitative Research guidelines(27) and evaluation recommendations for post-positivist research(28) were applied. Using thematic analysis,(25) a preliminary codebook with categories related to the utility, timing, and administration of bereavement risk screening was developed a priori but modified throughout the coding process. Interviews were independently coded by at least two coders among a team of three (KR, GJ, & ES) who met to reach consensus using this iterative, reflexive process, reviewing previously coded interviews to apply new, refined codes. Codes were derived from the interview text and refined and synthesized into themes. The presence of a code was counted if it was mentioned at any point during the interview. Care was taken not to overinterpret feedback such that codes were only assigned if an excerpt explicitly matched a code and new codes were created as applicable. Consistent with recommendations for reporting qualitative findings,(29) themes are illustrated with quotes rather than the inclusion of frequencies or percentages, which would be misleading because themes were not limited to direct responses to questions asked of every participant (i.e., themes were not mutually exclusive).(25) To provide some information about the prevalence of the themes, we cautiously utilized semi-quantification terms (e.g., “few,” “many”);(29) this is not, however, meant to reflect population-level generalizability, which is outside the scope of qualitative research.

Results

Participants

Participants included spouses/partners (n=26), parents (n=3), and adult children (n=9) of either patients diagnosed with advanced cancer (pre-loss=12) or of individuals who died of cancer-related causes between 2 months and 1 year prior to the interview (post-loss=26). See Table 1 for sample characteristics.

Table 1.

Demographic characteristics of participant sample by group and total; N=38.

	Pre- loss	Post- loss	Total
Kinship
Adult child	3	6	9
Parent	0	3	3
Spouse/Partner	9	17	26
Race
African American/Black	2	2	4
Asian	1	0	1
Caucasian/White	8	24	31
Other	1	0	1
Ethnicity
Hispanic/Latino(a)	1	1	2
Non-Hispanic/Latino(a)	11	25	36
Gender
Cis-Male	5	8	13
Cis-Female	7	18	25
Sexual Orientation
Gay or Lesbian	0	3	3
Straight	12	23	35

Note: Demographic variable categories are not mutually exclusive.

When to Conduct Bereavement Risk Screening

Most participants expressed an openness to the idea of being screened before the patient’s death. Feedback on when this should occur varied, but many who described supporting pre-loss screening suggested it would be most appropriately to initiate when a patient is declining or transitioning to hospice. As one pre-loss husband expressed, “Certainly at the beginning of the end would be an appropriate time to connect…about bereavement support.” Some participants suggested screening around the time a patient receives an advanced cancer diagnosis to connect to psychosocial support from the beginning. For example, a bereaved daughter described her preference of being asked about grief support at a patient’s first appointment, stating, “I think proactive is better than reactive.”

Participants provided feedback on how they would react to screening during a difficult time, such as transition to hospice. Though many were open to screening at any time, even difficult moments, some participants nominated times that they would not want to engage in pre-loss screening because it would be emotionally overwhelming. These included at the time the patient receives a diagnosis of advanced cancer, while the patient is on active treatment, and when the patient is rapidly declining. One bereaved wife whose husband had very rapid decline shortly after diagnosis stated, “It was just everyday there was stuff to do…it would have been okay to do afterwards but not before…you just don’t want to deal with it.” Participants also described concerns that responding to questions about their own feelings and experiences would detract from their focus on the patient’s needs during difficult times. A few participants expressed they would not have wanted to engage in screening at all pre-loss. Notably, these were all bereaved participants who could only speculate about what they would have wanted. These participants similarly described the idea of being asked about challenging experiences to be incongruous with their efforts to remain positive and expressed it may push them to face a painful inevitability they were not ready to acknowledge. One bereaved wife commented, “I was being positive and…I think I would have had a problem answering questions because I’m in a positive state and I’m trying to stay positive.”

Many participants explicitly indicated that they would be open to being screened after the patient’s death, and none expressed opposition to screening in bereavement. Some noted that they would prefer that screening not occur immediately after the death, with several expressing they would prefer it occur 1-2 months post-loss after they have taken care of practical matters (e.g., funeral planning), informal support diminishes, or they feel “ready.” As noted by a bereaved daughter, “I would say at least two months after because … right away…I received like some letters….and I couldn’t even like look at it. I couldn’t even respond.” While this daughter was open to completing the BRISQ eventually, she felt it would be overwhelming immediately post-loss.

Many participants indicated it would be important to screen at several points pre- and post-loss, in part because certain BRISQ items assess experiences that could change over time (e.g., anger), such as around the time of diagnosis, at end-of-life, and post-loss. One pre-loss wife poignantly expressed, “Everybody that have cancer don’t overcome it, so if they’re going to go the long road…like in a marathon, there’s drinks of water along the way. So along the way, you can approach it again…And then… after the end, when everybody’s forgotten about you.”

How to Conduct Bereavement Risk Screening

Participants also provided feedback about how to introduce bereavement risk screening. Overall, feedback indicated screening should involve contact with a provider, either in-person or on the phone. Generally, participants preferred that screening involve a mental health professional. One pre-loss son commented, “I think a social worker would be a better option because they help you.” Those who preferred a mental health professional conduct screening viewed this as a way to immediately connect to support. Other participants expressed they would complete the BRISQ, regardless of provider discipline, if they trusted the institution.

Some participants spontaneously provided feedback on ways the BRISQ may be delivered. Some expressed they would not want to complete a mailed measure, others emphasized they would not mind receiving the BRISQ by mail or email if a follow-up call was provided. Overall, participants highlighted the importance of having a sensitive, clear description of the purpose and how screening would lead to support. As one bereaved wife expressed, “If you told me we’re going to give this to you because based on this, we might be able to provide some help, then I’d say okay.”

How Bereavement Risk Screening Could Be Helpful

Some participants nominated ways that screening could be helpful, including identifying immediate support needs or accessing future support. Participants shared completing the BRISQ made them feel "less alone" because their experiences were common enough to be included in a questionnaire. One pre-loss wife expressed, “It’s good to have…the input to know that you’re not by yourself.” Another bereaved partner commented, “I think it would be good … to help somebody before, just to…to manage expectations…even if they might not be able to process it.” Some participants emphasized that, given the emotional investment of answering these questions, it would be important their responses be reviewed by someone who can provide follow-up. Highlighting the need for follow-up, one bereaved wife expressed, “I mean I can absolutely 100% validate the need for more outreach.”

Participants were asked to reflect on whether other family members would find screening helpful. Several noted the utility of expanding screening beyond the primary caregiver, and a few expressed it may be helpful to conduct screening with the patient to facilitate end-of-life discussions. One bereaved wife shared, “I don’t think it should have been just to me. I think it should have been both of us…and [to] have those conversations.” However, others noted this may be challenging if the patient and caregiver had different needs or prognostic awareness.

Discussion

This study described family stakeholder feedback on the implementation of bereavement risk screening in the context of advanced cancer. Participants were generally supportive of screening, suggesting its acceptability and utility as a pathway to accessing bereavement care. Feedback suggested screening should be approached sensitively, be attentive to the family member’s specific needs, and involve follow-up. Many participants expressed support for screening before and after the loss, with potentially multiple screenings to capture experiences and needs that may change over time. A small subset of post-loss participants, all of whom had been the patients’ primary caregivers, expressed reluctance about pre-loss screening, believing it would have distracted them from caregiving. It may be that these bereaved participants would have felt differently had they been asked while caregiving, as nearly all pre-loss participants expressed support for screening.

A common theme was that, although engaging in bereavement risk screening may be emotionally challenging, it could provide an opportunity to be connected to psychosocial support, even before bereavement; this is consistent with research demonstrating the utility of discussing bereavement pre-loss to increase preparedness for the patient’s death.(30) Many family members indicated they would prefer follow-up after completing screening, with several preferring contact with a mental health professional. However, this preference may have been influenced by completing and discussing the BRISQ with an interviewer, which many participants noted was helpful. Though having a mental health professional follow up with family members would be ideal, this is hindered by a lack of dedicated bereavement care providers in oncology settings. In situations in which a mental health provider is not available to coordinate screening, our findings suggest family members would appreciate if screening involved a familiar clinician such as oncology and palliative nurses or chaplains. They also underscore the importance of having a well-functioning bereavement care team that would implement standardized, timely, and consistent outreach(2) to families post-loss to improve access to bereavement care. In fact, a recent study on bereavement risk screening reported facilitating early outreach to those identified as at risk streamlined the bereavement referral process.(17)

Study Limitations

The goal of this study was to obtain family members’ impressions about bereavement risk screening. As feedback was obtained in the context of an evaluation of the BRISQ, reactions to the measure may have impacted feedback received about screening implementation more broadly. Participant responses represent their subjective experiences and, thus, may not necessarily be feasible in all healthcare systems. Another study limitation was possible sampling bias, as most pre-loss participants were recruited either through inpatient hospice or palliative care teams; caregivers using palliative care may be less distressed or generally more in favor of supportive care.(31) Nevertheless, recruitment of family members pre-loss was challenging, as reflected in the disparate sample size. This was somewhat expected as caregivers of patients with advanced cancer have numerous responsibilities(32) that can make study participation challenging. We found that clinicians providing end-of-life care who assisted with recruitment were understandably cautious about referring caregivers due to concerns screening may provoke distress in those with less prognostic awareness. Thus, the findings may not reflect feedback of those most “at-risk” or may over-represent receptivity to screening.

Further, despite significant efforts, sample diversity was limited. Cultural and religious/spiritual contexts may influence grief, and possibly views on screening implementation. The limited number of parent participants is problematic, as research suggests parents who have lost a child to cancer have unique needs during caregiving and bereavement.(33) Additional research will be critical to determine how to sensitively approach bereavement risk screening in a pediatric cancer context. During recruitment, we also received feedback that siblings and other kinships (e.g., close friends) should be included in future BRISQ studies.

Clinical Implications

Recommendations for bereavement support standards have suggested screening all caregivers of patients with advanced disease both pre- and post-loss.(1, 34) This would be more feasible with a brief measure and adequate staff support and follow-up. Importantly, completion of pre-loss bereavement risk screening does not require family members to be accepting of a poor prognosis, nor need it imply the patient is imminently dying. Although some screening items may result in transient distress, both pre- and post-loss participants were willing to engage if screening is approached with sensitivity to unique emotional, familial, and cultural contexts and involves follow-up. This is consistent with our previous findings showing the importance of “personalized and yet standardized” bereavement care.(34)

Bereavement risk screening may be particularly useful in palliative care contexts to initiate a conversation about preparing for bereavement and to identify family members who may need more persistent and targeted outreach post-loss. Screening may also be helpful in community cancer and hospice settings in which the resources to provide consistent, in-depth, specialized bereavement care are often limited.(35) Furthermore, institutions may lack the tools to follow-up with at-risk family members once patients die.(6) Given these limited resources and research that has suggested that many people can adapt to and integrate their loss without professional bereavement counseling,(36) self-report screening may facilitate tracking those identified as high risk in order to allocate limited professional bereavement resources to those most in need. Contact with family members should ideally be initiated pre-loss to facilitate follow-up and provision of support over time. “Who” should initiate bereavement risk screening will vary across settings; this is reflective of the limited adoption of standards of bereavement care and resources in oncology settings. Pre- and post-loss screening may be conducted by oncology, palliative care, or psychosocial oncology teams involved in the patient’s care. In situations when a patient is on hospice care, the hospice service may be best positioned to assume this responsibility.

Bereavement risk screening may also be limited by broader challenges in providing family-centered care. Documenting caregiver encounters in the patient’s medical record presents significant privacy and confidentiality concerns.(2) Establishing a medical record for caregivers in parallel with the creation of patient records has been advocated for as a standard of care;(37) however, hospital systems do not regularly register caregivers, and thus this remains aspirational. Nevertheless, the ability to systematically screen may require creating a medical record for a family member unless caregivers already have a personal record established.(37) A feasible first step may be to direct initial outreach to the health care proxy or caregiver listed in the patient’s chart and to inquire if other family members may be in need of support.

Though bereavement risk screening offers a pathway to improve access to bereavement care across diverse settings, it is incumbent on the field to continue to develop innovative ways of addressing other gaps in care and meeting recommended bereavement care standards.(1, 38) It has previously been suggested that bereavement care should be tailored based on the risk level of the grieving individual;(10, 11) tools such as the BRISQ would facilitate this triaging. Low risk family members may not need direct intervention but could be provided with general psychoeducation about grief and individual peer or community support.(10) Family members at moderate risk could be provided referrals for counseling, support groups, and additional follow-up. Those at high risk should be connected with providers either through the treating medical institution or in the community, specializing in grief and informed by evidence-based grief practices.(39, 40) Institutions may consider creating databases of local, trained mental health professionals who specialize in grief counseling as well as other community bereavement services. In addition, barriers to accessing bereavement services can be reduced by offering services virtually.(39)

Conclusions

This study on bereavement risk screening utilized stakeholder feedback, which is a key step to the success of implementing psychosocial assessment in oncology.(22) Pre- and post-loss family members generally supported the use of bereavement risk screening and provided integral feedback on when and how it should be approached. Family members emphasized the importance of providing a sensitive, clear introduction to the purpose of screening and pairing it with follow-up to connect to psychosocial support if needed.

A stakeholder-informed self-report tool that assesses levels of bereavement risk would allow triaging of limited bereavement resources, yet this is only one component in improving bereavement care; other systemic issues need to be addressed to increase feasibility. Future implementation efforts might focus on optimizing provider and institutional adoption of screening, streamlining documentation, finding innovative ways of extending reach using existing resources, and advocating for additional resources such as dedicated bereavement care coordinators and mental health providers specializing in grief. With regard to the BRISQ itself, future directions will include obtaining provider and institutional-level implementation feedback, assessing which items are the strongest predictors of negative outcomes to create a briefer tool, and establishing cutoffs for levels of risk as advocated for by Aoun et al.(11) In sum, standardized risk screening using a simple, validated self-report tool holds promise as a pragmatic approach to increasing access to bereavement care.

Data Availability Statement:

Data available on request due to privacy/ethical restrictions. The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.