When does disruption of meaning in bereavement become debilitating? Screening for deleterious outcomes with the ISLES-SF.

Meaning reconstruction is a central process in bereavement adaptation. However, clinical measures or means for identifying individuals whose struggles with meaning making have become dysfunctional have yet to be developed for clinicians to readily use in practice. Therefore, the objective of this study was to evaluate the diagnostic effectiveness of the Integration of Stressful Life Experiences Scale-Short Form (ISLES-SF) for measuring clinically significant struggles with meaning making of loss. The results of this study of 118 bereaved adults support the diagnostic use of the ISLES-SF (sensitivity of 83% and specificity of 73%), as well as an identified cut-score (≥ 14) that researchers and clinicians can employ to accurately and efficiently identify those whose difficulties with making meaning of loss have become debilitating. The results also showed that those who scored in the clinical range of the ISLES-SF displayed higher levels of anxiety, depression and prolonged grief than those not struggling with meaning making.

Mental Health Service Integration in Hospice Organizations: A National Survey of Hospice Clinicians and Medical Leadership.

Background: Unmet mental health needs are associated with a range of negative consequences for individuals at the end of life. Despite the high prevalence of mental health needs among individuals enrolled in hospice, there is a paucity of data describing mental health service integration in hospices in the United States. Objectives: 1. To identify patterns of mental health service integration in hospice organizations nationally; 2. To characterize gaps in mental health service delivery in hospice settings as perceived by hospice clinicians and medical leadership. Methods: A cross-sectional survey querying hospice clinicians and hospice medical leadership nationally. Results: A total of 279 surveys were included. Clinically significant mental health symptoms were common among hospice patients; the most frequently encountered symptom groups were depression, anxiety, dementia, and delirium. A minority of hospices maintained relationships with psychiatrists (23%, n = 60), psychiatric nurse practitioners (22%, n = 56), or psychologists (19%, n = 49). Only 38% (n = 99) of respondents were satisfied with their patients' access to services and only 45% (n = 118) were satisfied with the quality of these services. Common limitations to providing adequate mental health services included lack of specialist services, short length of stay for patients, and reluctance of patients to engage in these services. Conclusions: Significant mental health symptoms are common among hospice patients, and hospice organizations perceive these needs are not being met. Further research is needed to better understand the current treatment landscape and design interventions to address these needs.

Comparing two advance care planning conversation activities to motivate advance directive completion in underserved communities across the USA: The Project Talk Trial study protocol for a cluster, randomized controlled trial.

BACKGROUND: Advance care planning (ACP) is a process involving conversations between patients, loved ones, and healthcare providers that consider patient preferences for the types of medical therapies received at the end of life. Underserved populations, including Black, Hispanic, rural, and low-income communities are less likely to engage in ACP than other communities, a health inequity that results in lower-quality care and reduced hospice utilization. The purpose of this trial is to compare efficacy of two interventions intended to motivate ACP (particularly advance directive completion) for those living in underserved communities. METHODS: This 3-armed cluster, randomized controlled mixed methods design is being conducted in 75 community venues in underserved communities across the USA. The goal of the trial is to compare the efficacy of two interventions at motivating ACP. Arm 1 uses an end-of-life conversation game (Hello); Arm 2 uses a nationally utilized workshop format for ACP conversations (The Conversation Project); and Arm 3 uses an attention control game (TableTopics). Events are held in partnership with 75 local community-based host organizations and will involve 1500 participants (n=20 per event). The primary outcome is completion of a visually verified advance directive at 6 months post-event. Primary analyses compare efficacy of each intervention to each other and the control arm. Secondary mixed methods outcomes include (a) other ACP behaviors and engagement; (b) communication quality; (c) impact of sociocultural environment on ACP (via qualitative interviews); and (d) implementation and sustainability. Subgroup analyses examine outcomes for Black, Hispanic, and rural groups in particular. DISCUSSION: This trial will add to the evidence base behind various conversational ACP interventions, examine potential mechanisms of action for such interventions, and provide qualitative data to better understand the sociocultural environment of how community-based ACP interventions are experienced by underserved populations. Results will also provide important data for future researchers to learn whether visual verification of advance directives is necessary or whether reliance on self-reported outcomes is of comparable value. Data from this study will inform ways to effectively motivate underserved communities to participate in advance care planning. TRIAL REGISTRATION: ClinicalTrials.gov NCT04612738. Registered on October 12, 2020. All information from the WHO Trial Registration Data Set can be found within the protocol.

Success of a Community-Based Delivery at Recruiting Individuals from Underserved Communities for an Observational Cohort Study of an Advance Care Planning Intervention.

BACKGROUND: Underserved and minority populations are often reluctant to engage in advance care planning and/or research often due to distrust in healthcare and/or research institutions. AIM: To determine if use of a community-based delivery model can facilitate recruitment of individuals from underserved communities in research about advance care planning. DESIGN: Recruitment data are presented from a prospective, mixed methods observational cohort study that examined the feasibility and preliminary efficacy of a community-based delivery model involving an end-of-life conversation game to motivate participants to complete advance care planning behaviors. Event attendance and research participation data are reported. SETTING/PARTICIPANTS: Game events were held in community venues in 27 states across the US in 2018-2019. The model involved leveraging existing social networks to recruit attendees and research participants to community game day events. Attendees were eligible for research if they were adults who read/spoke English. RESULTS: A total of 1,122 individuals attended events at 53 sites. Participants generally reported low income (48% reported $30,000 annual income). At sites with research assistants, there was a 90% consent rate (92% were Black). At community outreach sites, 45% agreed to a follow-up research phone call (49% were Black). CONCLUSIONS: Use of the community-based delivery model successfully engaged undeserved communities in a research-based advance care planning related community outreach event. This model may be useful for overcoming underserved and minority populations' skepticism and distrust of healthcare and research that is a common barrier to progress in health agendas, especially advance care planning.

Low Skepticism and Positive Attitudes About Advance Care Planning Among African Americans: a National, Mixed Methods Cohort Study.

BACKGROUND: African Americans have low engagement in advance care planning (ACP). This has been attributed to healthcare distrust and skepticism about ACP. A better understanding of these attitudes is needed to address health disparities related to end-of-life care. OBJECTIVE: To explore the ACP-related values and beliefs of diverse African American communities across the USA and then the perceived value of an inexpensive end-of-life conversational game. DESIGN: Prospective, convergent, mixed methods cohort study involving fifteen underserved, African American communities across the USA. PARTICIPANTS: Of the 428 who attended events at purposively sampled sites, 90% consented to the research; 37% participated in one of 15 focus groups (n = 141). INTERVENTION: An end-of-life conversation game, played in groups of 4-6. MAIN MEASURES: The validated, 7-item ACP values and beliefs questionnaire (scaled 7 = least skeptical, 49 = most skeptical) was administered pre-game. Post-game focus groups explored perceptions about ACP and the intervention. KEY RESULTS: Participants had positive attitudes (low skepticism) about ACP with a median score of 12.00 (7.00, 20.00). Values and beliefs did not significantly differ by geographical region; however, rural areas were observed to be slightly more skeptical than urban areas (median score 14.00 vs. 11.00, p = 0.002). Themes from focus groups converged with survey data showing participants valued the ACP process and consider further engagement in ACP to be worthwhile. Subthemes emphasized the need for and value of ACP. CONCLUSIONS: Skepticism about ACP may contribute to low rates of ACP engagement in underserved African American communities. The positive attitudes uncovered in our study either negate previous findings or suggest reduced skepticism. TRIAL REGISTRATION: This study has been registered at clinicaltrials.gov ( NCT03456921 ).

Association of Participation in an End-of-Life Conversation Game With Advance Care Planning Behavior and Perspectives Among African American Individuals.

Importance: Less than 25% of African American individuals have completed advance directives and are thus vulnerable to poor end-of-life care. Low-cost interventions are needed to increase engagement in advance care planning (ACP). Objectives: To investigate whether an end-of-life conversation game motivates African American attendees to engage in ACP and to assess whether the game is well received and endorsed. Exposures: Attendance at an end-of-life conversation game (Hello) played in groups of 4 to 6 participants for 60 minutes. Design, Setting, and Participants: Prospective, mixed-methods cohort study conducted from 2018 to 2019 with a 3- to 11-month follow-up interview. Game events were held in 53 community venues across the US; 15 were purposively sampled for onsite research procedures. Of 428 attendees at purposively sampled sites, 386 (90%) consented to research procedures (6 attendees were removed from analysis for protocol deviation). Of 367 attendees who provided accurate contact information, 232 (63%) were contacted, and 220 were included in follow-up analyses. Main Outcomes and Measures: The primary outcome was advance directive completion rates after the intervention. Secondary outcomes included rates of other ACP behaviors, ACP engagement, conversation satisfaction and realism, and participants' Net Promoter Score (a measure of endorsement). Follow-up telephone interviews explored the game experience and relevant ACP behaviors of attendees. Results: Of 380 individuals who participated (mean [SD] age, 62.2 [13.8] years; 304 were female [80%], and 348 were [92%] African American), none withdrew because of an adverse event. After the intervention, 91 of 220 attendees (41%) completed a new advance directive; 176 of 220 attendees (80%) discussed end-of-life wishes with loved ones, and 214 of 219 attendees (98%) completed at least 1 ACP behavior. There was a moderate increase in the self-efficacy domain on the ACP Engagement Survey (mean [SD] change from before to after the game, 0.54 [0.98]; P < .001). The mean (SD) conversation satisfaction score was 6.21 (0.93) (range, 1-7, with 7 being highest satisfaction), and the overall Net Promoter Score was 57.89 (range, -100 to 100, with 100 being highest endorsement). Interviews revealed 5 themes about the game: (1) it was a useful forum for ACP; (2) it provided new information and perspective; (3) it was emotionally beneficial; (4) it increased appreciation for ACP; and (5) it empowered and motivated participants to perform ACP. Mixed-methods integration showed convergence across data sets. Conclusions and Relevance: Among a nationwide sample of African American individuals, the end-of-life conversation game appeared to be well received and was associated with high rates of ACP behavior. This low-cost and scalable tool may help reduce health disparities associated with end-of-life care.