Sudden Unexpected Infant Death (SUID) is the leading cause of postneonatal mortality worldwide. Bereaved parents commonly seek peer support for bereavement-related needs, but competencies and standardized training for organizations offering peer facilitators are lacking. We developed and piloted a train-the-trainer curriculum addressing peer facilitators' knowledge, skills, and attitudes for supporting SUID-bereaved parents. A needs assessment of international peer support organizations and expert consensus from an international working group informed development of competencies and a curriculum. A 1.5-day in-person pilot of eight participants from five countries was conducted, followed by remote sessions. Pre- and post-training surveys assessed impact. Wilcoxon signed-rank tests analyzed outcomes; open-ended responses were descriptively summarized. Significant improvements in knowledge, skills, and attitudes (p < .05) were shown across 13 competencies, including grief literacy and group facilitation skills, suggesting the curriculum is feasible, acceptable, and effective. This train-the-trainer model may support scalable, global peer bereavement training.
OBJECTIVES:Examine ICU caregivers' experience of patient-related financial strain and its association with caregiver psychological distress (i.e., posttraumatic stress, anxiety, and depressive symptoms) and healthcare perceptions (i.e., medical mistrust, decisional regret). DESIGN:Cross-sectional secondary analysis using baseline data from an ongoing, multicenter randomized controlled trial intervention study ( ClinicalTrials.gov identifier NCT05587517). SETTING:Three medical ICU sites in the United States. SUBJECTS:Family caregivers ( n = 97) of patients in medical ICUs admitted from October 2022 to December 2025, with a mean age of 52.32 years, of whom 67 (69.1%) were female, and 42 (43.3%) were the spouse/partner of the patient. INTERVENTIONS:None. MEASUREMENTS AND MAIN RESULTS:Caregivers completed measures assessing degree of difficulty paying for patient medical care, posttraumatic stress symptoms, anxiety symptoms, depressive symptoms, medical mistrust, and decisional regret. Analyses found 63.9% participants reported difficulty paying for patient medical care and that financial strain was positively associated with severity of posttraumatic stress symptoms ( r = 0.35; p < 0.001; 95% CI, 0.15-0.52), anxiety symptoms ( r = 0.22; p < 0.05; 95% CI, 0.02-0.41), depressive symptoms ( r = 0.27; p < 0.01; 95% CI, 0.07-0.45), decisional regret ( r = 0.30; p < 0.05; 95% CI, 0.03-0.52), and medical mistrust ( r = 0.30; p < 0.01; 95% CI, 0.10-0.48). CONCLUSIONS:Over half of ICU caregivers endorsed difficulty paying for patient medical care. Caregivers with greater difficulty paying for patient medical care had more severe posttraumatic stress symptoms, anxiety symptoms, and depressive symptoms; greater decisional regret; and higher levels of medical mistrust.
RATIONALE:Family members of patients in intensive care units (ICUs) experience psychological distress both during and after the ICU stay. Yet, past interventions are few and largely ineffective. OBJECTIVES:We developed a flexible, tele-delivered psychotherapeutic intervention based on contemporary cognitive therapeutic methods and tested its feasibility in a one-arm pilot study. Although evaluated in family members of patients with COVID-19, the intervention was developed to be broadly applicable to mental health problems in ICU family caregivers. METHODS:Adult family members of patients with COVID-19 in 5 ICUs across Denmark received weekly sessions with clinical psychologists during the ICU stay and on a needs basis for 8 weeks postdischarge. The intervention manual specified a catalog of treatment principles and methods from contemporary cognitive therapies. Questionnaires evaluating peritraumatic distress, anxiety, depression, stress, rumination, worry, and tolerance of uncertainty were administered at preintervention, postintervention, and 6- and 12-month follow-up. Mixed-effects models estimated the change in mental health symptoms over time. A subset of family members and psychologists completed in-depth interviews postintervention analyzed with thematic analysis. RESULTS:Of 43 eligible family members, 40 (93%) participated. Two withdrew consent during the intervention. On average, family members received 6 sessions (range, 0-15) over 9 to 118 days. Both the tele-delivery format and the intervention methods were found feasible and acceptable by family members as well as psychologists, and family members found the intervention beneficial in validating and addressing their evolving needs and helping them manage distress. Preliminary effects at postintervention were large reductions in mental health symptoms for peritraumatic distress (Hedges' g = -0.86 [95% CI, -1.1 to -0.62]), anxiety (g = -2.46 [95% CI, -2.36 to -1.51]), and depression (g = -1.77 [95% CI, -2.5 to -0.88]), also seen at follow-up, together with medium improvements for perceived stress. CONCLUSIONS:This tele-based psychotherapeutic intervention for family members of patients in ICUs was feasible and acceptable. Tele-delivered contemporary cognitive therapies present a promising approach for reducing peritraumatic distress, anxiety, and depression. TRIAL REGISTRATION:ClinicalTrials.gov (NCT04409821).
Background:Caregivers of patients with advanced cancer shoulder immense responsibilities as they care for patients, including symptom and medication management, providing emotional support, and navigating healthcare treatment and decision-making. Due to the heavy toll of these responsibilities, caregivers are at high risk for profound mental health challenges, including anxiety, depression, and posttraumatic stress disorder. A key driver of this heightened risk for psychopathology in caregivers is existential distress, manifesting as a loss of meaning and purpose, decreased spiritual well-being, and hopelessness. Historically, psychosocial interventions targeting distress in cancer caregivers have neglected to address existential distress. Meaning-Centered Psychotherapy for Cancer Caregivers, a 7-session structured intervention, was developed to address this gap. In a pilot randomized controlled trial, the approach led to enhancements in personal meaning, benefit finding, and spiritual well-being. Here, we present a large, multi-site trial that aims to definitively examine the efficacy of Meaning-Centered Psychotherapy for Cancer Caregivers in an adequately powered study. Method:This randomized controlled trial will evaluate the efficacy of Meaning-Centered Psychotherapy for Cancer Caregivers versus Supportive Psychotherapy for Cancer Caregivers on primary (personal meaning and spiritual well-being) and secondary (anxiety, depression, sense of meaning in caregiving, benefit finding, caregiver burden, social support) outcomes at baseline, post-treatment, and at 6- and 12-months follow-up. It will also evaluate the role of sense of meaning in life as a mediator of secondary outcomes, as well as the impact of Meaning-Centered Psychotherapy for Cancer Caregivers on pre-and post-loss bereavement outcomes. Two hundred caregivers of patients with advanced (stage III/IV) solid tumor cancers from Memorial Sloan Kettering Cancer Center, Sylvester Comprehensive Cancer Center, and the community will be enrolled. Discussion:Meaning-Centered Psychotherapy for Cancer Caregivers has the potential to help alleviate existential suffering in caregivers as they manage the multifaceted demands of caring for patients with advanced cancer. This trial seeks to evaluate the efficacy of this intervention in a more robust and representative trial of cancer caregivers, and extends prior research to explore mediators of improvement and the impact of the intervention on pre- and post-loss bereavement outcomes. Trial registration:This trial is registered at ClinicalTrials.gov, NCT06307535, registered on 03/05/2024.
Introduction: Psilocybin shows encouraging outcomes for patients with cancer and major depressive disorder (MDD). However, there is insufficient evidence on the use of evidence-based psychotherapeutic interventions to consistently guide and standardize psilocybin preparation, dosing, and integration. Meaning-centered psychotherapy (MCP) is a manualized, brief psychotherapeutic intervention that enhances meaning and purpose among recipients. This article substantiates the rationale for using MCP as a psychotherapeutic intervention to accompany psychedelic-assisted therapy (PAT) with psilocybin for patients with cancer and MDD.Materials and Methods: We sampled seven patients with cancer and MDD who previously received PAT with psilocybin followed by group MCP in a phase 2 open-label trial, as well as six therapists who delivered the interventions. First, electronic open-ended response surveys were distributed to explore participant experiences during the phase 2 trial and elicit recommendations to adapt MCP for psilocybin. Second, the research team developed a 5-session model of MCP and psilocybin therapy (MCP-PSIL) based on survey responses. Finally, four focus groups were conducted (two with patients and two with therapists) to expand on patient experiences during the phase 2 trial and gather feedback on MCP-PSIL.Results: Seven patients (ages 53-80 years) and six therapists (mental health professional experience ranging 9-44 years) participated in both surveys and focus groups. Focus groups underscored the value of experiences related to psilocybin, the group, and MCP, as distinct elements and in conjunction. Participants shared key recommendations to enhance combined psilocybin and MCP experiences and the 5-session MCP-PSIL model. The importance of the group format was also emphasized while noting that individual MCP may be indicated in certain circumstances.Conclusion: Findings suggest that MCP is a natural therapeutic partner to guide patients throughout the PAT continuum. As MCP-PSIL is tested in the future, we anticipate MCP will leverage the PAT experience by building therapist capacity to optimize care while reducing avoidable distress for patients and maximizing their meaning-making opportunities.
OBJECTIVE:In the context of cancer, pain demands interpretation. Our research has found that fear of cancer recurrence (FCR) is associated with the tendency to interpret ambiguous information as health-related. We aimed to determine whether we could modify these interpretation biases to improve FCR, and pain outcomes. METHODS:We conducted a double-blind randomized controlled trial comparing two fully automated Cognitive Bias Modification for Interpretation (CBM-I) programs to a matched sham. We randomized 174 people with breast or ovarian cancer to one of three groups (pain-related CBM, cancer-specific CBM or sham). Participants completed four training sessions, and outcomes were assessed before and after intervention and 2 weeks later. We nominated co-primary outcomes as FCR and fear of progression (FoP) so that measures were suited to those with and without active disease and measured pain outcomes and other secondary psychosocial outcomes. RESULTS:We analyzed data using mixed-model linear regression and intention-to-treat. Results indicated that both the cancer-specific and pain-related training groups showed significant improvements in FCR (F(2,440) = 17.19, p < 0.0005) and FoP (F(2,440) = 15.03, p < 0.0005) over time compared to sham. Both versions of CBM were associated with benefits in pain intensity (F(2,440) = 6.14, p < 0.0005) and pain interference (F(2,440) = 5.223, p = 0.001) compared to sham. No other secondary outcomes improved. CONCLUSION:CBM for interpretation is an efficacious treatment for FCR, FoP and pain outcomes in ovarian and breast cancer. This intervention was delivered wholly online, had high completion rates (80%) and therefore is highly scalable. CBM-I could be part of a stepped care model to meet the large unmet need for people who are living with and beyond cancer.
Healthcare providers (HCPs) face high rates of distress, experienced as burnout, moral distress, compassion fatigue, and grief. HCPs are also experiencing a crisis in meaning whereby distress is associated with disconnection from meaning in work and, in turn, a lack of meaning in work can further perpetuate distress for HCPs. Although scalable systems-level solutions are needed to tackle multidimensional HCP distress, it is also necessary to address HCP suffering at individual, team, and institutional levels. Targeted interventions to alleviate HCP distress are limited. Meaning-centered psychotherapy (MCP), a brief, evidence-based, intervention first developed for persons with advanced cancer, holds promise to mitigate HCP distress. This study adapted MCP for HCPs through feedback from a multidisciplinary sample of clinicians trained in MCP and working in healthcare settings. A survey was distributed electronically between November and December 2023 to HCPs previously trained in MCP assessing quantitative and qualitative feedback on the appropriateness of MCP for HCPs, the relevance of MCP session topics and exercises, and implementation barriers and facilitators. Descriptive statistics on relevant participant ratings were calculated; a matrix analysis approach was used for qualitative data. Forty participants, primarily mental health providers, expressed that MCP principles were highly relevant for HCPs and offered key insights on appropriate intervention modifications, including the need for a primary focus on meaning in professional life, reduced intervention length, and delivery in group format. Feedback informed critical adjustments to promote appropriateness and acceptability of MCP-HCP which is poised for pilot testing to determine its feasibility and preliminary efficacy for HCPs.
ABSTRACTBackgroundAlthough scanxiety is common and impactful for people with advanced lung cancer, few interventions address this psychosocial concern.AimsTo create a stress management program for scanxiety.MethodsWe conducted a structured intervention adaptation process guided by the ADAPT‐ITT framework. We tailored materials from an existing evidence‐based program, drafted additional modules, and obtained feedback on initial content. Following content revisions and website prototype development, 21 participants (patients with metastatic lung cancer, n = 8; family members, n = 3; clinicians, n = 10) reviewed the program. Participants rated the program's acceptability (Acceptability of Intervention Measure; AIM), feasibility (Feasibility of Intervention Measure; FIM), appropriateness (Appropriateness of Intervention Measure; IAM), helpfulness (module Likert ratings), and usability (Post‐Study System Usability Questionnaire; PSSUQ), and completed semi‐structured interviews.ResultsData revealed positive impressions of the program. Participants rated the program as acceptable (89%), feasible (89%), and appropriate (95%; proportion with average ratings ≥ 4 out of 5 on AIM, FIM, and IAM respectively). They rated 6 of the 7 modules as helpful, appropriate, and fitting with their experience (77%–100% with Likert ratings ≥ 4 out of 5); the below‐threshold module (Introduction) was revised based on rapid qualitative analysis of interview data. Although 33% needed help to start using the website, its usability was rated highly after use (PSSUQ Mdn = 1.56, IQR = 1.11–1.82). The refined intervention is a largely self‐guided program to enhance stress management skills using psychoeducation, recorded on‐demand exercises, and 3 brief coaching calls.ConclusionsThis highly‐rated intervention has the potential to alleviate scanxiety among people with advanced lung cancer.
Meaning-Centered Psychotherapy (MCP) is a manualized, evidence-based intervention designed to help cancer patients to find meaning and alleviate distress. Meaning-Centered Psychotherapy Training (MCPT) is a multicomponent program for cancer care clinicians that consists of didactics, group experiential learning, and role-plays with simulated patients to learn MCP and acquire skills to deliver it in real-world oncology settings. The efficacy and impact of MCPT for multidisciplinary cancer care clinicians to learn and disseminate MCP is described and evaluated. A multilevel evaluation based on the RE-AIM framework was utilized to assess the efficacy of the MCPT program over the initial 5 years of the program. The outcomes of the evaluation supported MCPT goals. Three hundred forty-two participants attended MCPT. Overall satisfaction measured in the post-training assessment was high. Significant increases in MCP skills were demonstrated by participants over the course of the role-play sessions, and participants showed significant improvements in pre/post-training MCP knowledge assessment scores, as well as significant increases in self-reported overall MCP skills and core competencies. Follow-up survey responses indicate that MCP trainees were utilizing MCP, had made changes to their clinical practice, and progressed on individual implementation goals. During the first 5 years, the MCPT program was successfully developed, established, implemented, and shown to be effective in the dissemination of MCP across the RE-AIM domains. Future directions for training and implementation research include increasing diversity of providers and investigating the impact of the program on patient outcomes.
Grievers recall memories from both the life of the deceased and the dying days, but differences in recall across these memory types are not well-characterized. In this study, 100 bereaved German adults described up to ten important memories of a deceased close other (M = 7.86). Memories from the dying days were classified into: final memories, health transition events, last time events, and temporal markers. Among those who provided at least one dying days memory (73%), these memories were reported to be recalled privately and shared socially more often than memories from the deceased's life. Memories from the dying days were rated as less emotionally positive than those from the life, and contextual factors from the loss shaped memory recall frequency and emotional valence. Results underscore the need for appropriate end-of-life care to lay a foundation for adaptive remembering and suggest the relevance of dying days memories in therapeutic settings.
Bereaved parents often struggle to make sense of and find meaning in and after their loss due to the untimely nature of their child's death. Challenges with finding meaning have been associated with prolonged grief symptoms that can adversely affect grieving parents' quality of life. Recently, meaning-centered grief interventions that focus on facilitating adaptive meaning-making after loss have shown therapeutic benefits in reducing prolonged grief symptoms in bereaved individuals. However, these interventions are mostly administered in one-on-one, in-person settings, which limits their accessibility to a broader population due to logistical and locational constraints. While existing videoconferencing applications can provide remote bereavement support and deliver grief therapies, they often lack engaging user experiences and features to support high interactivity, guided imagery and mindfulness exercises commonly used in meaning-centered grief therapies. We hypothesize that the immersive and interactive nature of a networked immersive virtual reality (IVR) system, enhanced with custom content creation features from text-to-image generative artificial intelligence (genAI) models, will create a unique and individualized therapeutic experience that supports meaning-centered grief techniques and activities for bereaved parents in a shared virtual world. This work-in-progress paper presents the design concept of the system prototype, preliminary survey results on user acceptance of the technology, and selected user experience scenarios.
ContextEfforts to reduce the psychological distress of surrogate decision-makers of critically ill patients have had limited success, and some have even exacerbated distress.ObjectivesThe aim of this study was to determine the feasibility, acceptability, and preliminary efficacy of EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), an ultra-brief (∼2-hour), 6-module manualized psychological intervention for surrogates.MethodsSurrogates who reported significant anxiety and/or an emotionally close relationship with the patient (n=60) were randomized to receive EMPOWER or enhanced usual care (EUC) at one of three metropolitan hospitals. Participants completed an assessment of EMPOWER's acceptability, measures of psychological distress pre-intervention, immediately post-intervention, and at 1- and 3-month follow-up assessments.ResultsDelivery of EMPOWER appeared feasible, with 89% of participants completing all 6 modules, and acceptable, with high ratings of satisfaction (mean=4.5/5, SD=0.90). Compared to EUC, intent-to-treat analyses showed EMPOWER was superior at reducing peritraumatic distress (Cohen's d=–0.21, small effect) immediately post-intervention and grief intensity (d=–0.70, medium-large effect), posttraumatic stress (d=–0.74, medium-large effect), experiential avoidance (d=-0.46, medium effect), and depression (d=-0.34, small effect) 3 months post-intervention. Surrogate satisfaction with overall critical care (d=0.27, small effect) was higher among surrogates randomized to EMPOWER.ConclusionsEMPOWER appeared feasible and acceptable, increased surrogates’ satisfaction with critical care, and prevented escalation of posttraumatic stress, grief, and depression 3 months later.
Morbidity and mortality associated with bereavement is an important public health issue, yet economic and resource investments to effectively implement and sustain integrated bereavement services are sorely lacking at national and global levels. Although bereavement support is a component of palliative care provision, continuity of care for bereaved individuals is often not standard practice in palliative and end-of-life contexts. In addition to potentially provoking feelings of abandonment, failure to extend family-centred care after a patient's death can leave bereaved families without access to crucial psychosocial support and at risk for illnesses that exacerbate the already substantial public health toll of interpersonal loss. The effect of inadequate bereavement care disproportionately disadvantages vulnerable groups, including those living in resource-constrained settings. We build on available evidence and previous recommendations to propose a model for transitional care, firmly establishing bereavement care services within health-care institutions, while respecting their finite resources and the need to ultimately transition grieving families to supports within their communities. Key to the transitional bereavement care model is the bolstering of community-based supports through development of compassionate communities and upskilling of professional services for those with more substantial bereavement support needs. To achieve this goal, interprofessional health workers, institutions, and systems must shift bereavement care from an afterthought to a public health priority.
IntroductionTo contribute to the reduction and elimination of cancer-related local and global health disparities, interventions must be culturally adapted to reach diverse cultural groups and demonstrate success in improving clinical and psychosocial outcomes. We provide step-by-step information on the conceptual and methodological challenges involved in culturally adapting interventions and provide guidelines, suggestions, tools, and concrete steps for implementing the process. MethodsThis article provides information, guidelines, suggestions, tools, and concrete steps, based on three rigorous models of cultural adaptations, for implementing this process, followed with examples from the field, to illustrate the conceptual and methodological challenges involved in culturally adapting interventions. ConclusionOur systematic step-by-step approach recommends (1) the guidance of well-established research models; (2) use of multiple data sources and input from various stakeholders (i.e., from patients and providers); (3) qualitative and quantitative data usage and integration; (4) a steering committee with multiple perspectives, stakeholders assessments, and qualitative analyses; (5) consensus meetings; and (6) diverse representation on the steering committee and/or research team.
Objectives. Diagnosing mental health challenges in bereavement is controversial; however, regardless of one's position on this matter, assessments of bereaved individuals continue to occur in clinical and research contexts. It is critical for evaluations to account for contextual factors that are unique to bereavement. This paper summarizes considerations for diagnosing depression in bereaved individuals, focusing on use of the six-item Hamilton Depression Rating Scale (HAM-D6). Methods. Following a literature review of the Hamilton Depression Rating Scale (HAM-D) and various versions, we summarized decision rules we used in scoring the HAM-D6 in a study of parents bereaved by cancer. We expanded on existing scoring guidelines for each of the HAM-D6 items, including depressed mood, work and activities, general somatic symptoms, guilt, psychic anxiety, and psychomotor retardation, and illustrated clinical distinctions and probes for assessors to consider through case examples from our research with bereaved parents. Results. Considerations for assessing depressive symptoms and behavior changes in the context of bereavement were summarized. Symptoms that may be diagnostic of depression in some populations may reflect other factors in the bereaved, such as a change in priorities, social expectations surrounding grief, or avoidance of grief activators. Nuanced factors are important for assessors to consider when administering the HAM-D6 to bereaved individuals. Significance of results. Our sharing of these considerations is not intended to promote diagnosis of depression in bereavement but to highlight the unique contextual factors that distinguish symptoms of depression from common experiences of grievers when applying an assessment tool such as the HAM-D6. While validated measures can be constraining, they can have clinical utility; they may increase standardization in research, help clinicians communicate with each other, advance the field more generally to understand the varying struggles bereaved individuals experience, and systemically facilitate access to services via managed care.
Journal of Palliative MedicineVol. 25, No. 8 Fast Facts and ConceptsExpressing Condolences to a Family after the Death of a Child #443Lori Wiener, Wendy Lichtenthal, and Meaghann S. WeaverLori WienerAddress correspondence to: Lori Wiener, PhD, DCSW, Pediatric Oncology Branch, National Cancer Institute, NIH, 10 Center Drive, Room 1-6466, Bethesda, MD 20892, USA E-mail Address: wienerl@mail.nih.govSearch for more papers by this author, Wendy LichtenthalSearch for more papers by this author, and Meaghann S. WeaverSearch for more papers by this authorPublished Online:27 Jul 2022https://doi.org/10.1089/jpm.2022.0252AboutSectionsView articleView Full TextPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail View article"Expressing Condolences to a Family after the Death of a Child #443." Journal of Palliative Medicine, 25(8), pp. 1309–1310FiguresReferencesRelatedDetails Volume 25Issue 8Aug 2022 InformationCopyright 2022, Mary Ann Liebert, Inc., publishersTo cite this article:Lori Wiener, Wendy Lichtenthal, and Meaghann S. Weaver.Expressing Condolences to a Family after the Death of a Child #443.Journal of Palliative Medicine.Aug 2022.1309-1310.http://doi.org/10.1089/jpm.2022.0252Published in Volume: 25 Issue 8: July 27, 2022PDF download
Although grief is a reaction to a social loss, it has been viewed almost exclusively through the lens of individual psychology and not sociology. In this article, we suggest that more attention to sociological aspects of grief is warranted. We propose a micro-sociological theory of bereavement and grief to complement, not replace, psychological perspectives. We assert that bereavement represents a state of loss-associated social deprivations (e.g. social disconnection). Furthermore, we postulate that addressing social deprivations (e.g. enhancing social connection) will lessen severity of distressing, disabling grief and, thereby, promote adjustment to loss. Future research is needed to test our theory and the hypotheses that follow from it in the service of promoting adaptation to bereavement.