The responsibilities of family caregivers-the partners, parents, children, siblings, and friends who play an instrumental role in the care of patients with chronic and life-limiting illnesses-are dramatically increasing. As healthcare moves from the hospital to the home, family caregivers are tasked with carrying out healthcare tasks that were once assumed by healthcare professionals, too often without training, education, and support. As a result, family caregivers often feel unprepared for their responsibilities and are at risk for profound psychosocial, functional, and financial distress, all of which place them at risk for becoming the next generation of patients with chronic and life-limiting illnesses. While recent United States (U.S.) policy has sought to address the training needs of family caregivers through the Caregiver Advise Record Enable (CARE) Act, its implementation has been inconsistent. Here, we argue that the CARE Act presents an invaluable opportunity to identify family caregivers early in the caregiving trajectory, intervene on their multifaceted challenges, and prevent poor long-term outcomes. Capitalizing on points of contact between hospital staff and family caregivers via the CARE Act to facilitate screening, documentation, and triage processes has the potential to mitigate much of the distress and poor outcomes currently experienced by the U.S.'s 53 million family caregivers.

OBJECTIVE:Cancer-related posttraumatic stress disorder (PTSD) is prevalent among hematopoietic cell transplantation (HCT) survivors, yet access to evidence-based care is limited. This study evaluated adaptive, stepped-care treatment sequences for PTSD symptoms using a Sequential Multiple Assignment Randomized Trial (SMART), comparing digital and therapist-delivered interventions. METHODS:HCT survivors (N = 477), 1-5 years post-transplant, with probable or subthreshold PTSD, were randomized to the Cancer Distress Coach (CaDC) app or Usual Care. At Week 4, non-responders (i.e., < 5-point PCL-5 reduction) were re-randomized to CaDC + Coaching or therapist-delivered cognitive behavioral therapy for PTSD (CBT-PTSD). PTSD symptoms (primary outcome), depression, and anxiety were assessed at baseline, Week 4, Month 3 (primary endpoint), and Month 6. RESULTS:Both initial treatment groups demonstrated symptom reductions at Week 4 with no significant between-group differences; approximately 60% met early response criteria. By Month 3, outcomes reflected treatment escalation rather than direct comparison of initial interventions. Regimen-level analyses demonstrated differences across adaptive sequences for PTSD at Months 3 and 6, and for depression and anxiety at Month 3 (global p-values ≤ 0.018). Regimens escalating to CBT-PTSD were associated with greater and more sustained reductions than those escalating to CaDC + Coaching. The sequence initiating with CaDC and escalating to CBT-PTSD produced the largest effects. CONCLUSIONS:Although a self-guided digital intervention did not outperform Usual Care initially, adaptive stepped-care strategies that triage early responders and escalate non-responders to therapist-delivered CBT-PTSD were associated with the greatest reductions in symptoms. Digital tools may function as entry points within stepped-care models to allocate higher-intensity psychotherapy. TRIALS REGISTRATION:ClinicalTrials.gov, NCT04058795, registered 8/16/2019.

BACKGROUND:Rising advanced cancer incidence globally places profound existential distress and psychological burden on family caregivers. We culturally adapted Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C) from Western to Chinese context, targeting existential distress through meaning-making processes. AIMS:This pilot randomized controlled trial aimed to examine the feasibility, acceptability, and preliminary effects of an online MCP-C (eMCP-C) among caregivers of patients with advanced cancer. METHODS:Caregivers of patients with advanced cancer, experiencing distress related to caregiving, were randomly assigned (1:1) to eMCP-C or enhanced usual care groups. Over 7 weeks, participants received weekly individual session of eMCP-C focusing on meaning making and coping with caregiving, whereas enhanced usual care group received resources for mental health treatment and targeted referrals for specific distress problems. Feasibility outcomes were assessed through questionnaires and semi-structured interviews at 7-week. Efficacy outcomes were assessed by questionnaire at baseline, 7, and 19 weeks. RESULTS:Forty-six caregivers enrolled (26-79 years old), among which thirty-seven (80%) completed the study. Intervention attendance, retention rates, and participant satisfaction were satisfactory. Depression, anxiety, meaning, peace, and self-esteem improved from baseline to immediate and 3-month post-intervention in intervention group. Qualitative analysis revealed three key therapeutic mechanisms: (1) Therapeutic Alliance as a Catalyst for Intrapersonal and Interpersonal Healing, (2) Meaning-making Through Acceptance and Action, and (3) Empowering Through Affirmation and Self-Determined Action. CONCLUSIONS:For Chinese caregivers of patients with advanced cancer, eMCP-C is feasible, well-accepted, and showed preliminary benefits in psychological distress, meaning, peace, and self-esteem, compared to an enhanced usual care group.

Intensive care unit (ICU) mortality rates have substantially declined over the past few decades. Accordingly, there has been an increase in the number of ICU survivors, who are often burdened by long-term sequelae and high morbidity following their discharge. The term postintensive care syndrome (PICS) was first coined in 2012 to describe this constellation of physical, psychological, and cognitive sequelae, which may persist long after acute care hospitalization and may also affect family members. In this context, the timely integration and delivery of palliative care has the potential to alleviate the suffering experienced by both ICU survivors and their families. In this article, an interdisciplinary team presents ten tips to describe PICS and enhance the quality of care for palliative care clinicians caring for people with PICS.

PurposeCancer incidence is rising in Hong Kong, with over half of common cancers diagnosed at advanced stages, placing substantial demands on families and driving high caregiver distress. Meaning-centered psychotherapy for cancer caregivers (MCP-C) shows promise in Western settings but requires cultural tailoring for Chinese caregivers whose values are shaped by Confucian ethics. This study aimed to culturally and linguistically adapt MCP-C for Chinese caregivers of patients with advanced cancer in Hong Kong to enhance acceptability, relevance and conceptual equivalence.MethodsGuided by the ORBIT model and Bernal's ecological validity model (EVM), we conducted semistructured interviews with nine cancer caregivers and eight healthcare professionals (oncologists, nurses, social worker and clinical psychologist). The manual was translated and transcreated into traditional Chinese. Analysis used a hybrid deductive-inductive approach anchored to EVM domains with dual independent coding and consensus adjudication.ResultsAdaptations spanned all eight EVM domains (language, persons, metaphors/stories, content, goals, methods, concepts and context), including reframing "meaning" around family roles and filial responsibility, integrating Cantonese idioms, simplifying terminology, rebranding as a "meaning-centered well-being program," and enabling online delivery to improve feasibility.ConclusionThis systematic adaptation preserved therapeutic fidelity while enhancing cultural fit for Chinese caregivers. A mixed-methods feasibility study will evaluate acceptability, appropriateness and preliminary outcomes (meaning in life, distress, spiritual well-being and benefit finding) to inform subsequent efficacy trials.

Background Cognitive Behavioral Therapy (CBT) shows promise for addressing distress in cancer caregivers, though results are mixed. Traditional CBT may not fully address transdiagnostic processes underlying caregiver distress, such as attentional rigidity and perseverative thinking. Emotion Regulation Therapy (ERT), a contemporary CBT targeting these mechanisms, has promise for cancer caregivers (ERT-C). We compared ERT-C to caregiver-adapted CBT (CBT-C) on caregiver- and patient-reported outcomes.Methods We conducted a multisite RCT (ERT-C vs. CBT-C) with distressed caregivers of patients with any cancer type or stage. Caregivers completed measures of anxiety, depression, worry, rumination, burden, and quality of life (QOL) at baseline, post-treatment, and 3- and 6-months follow-up. Patients reported outcomes at baseline and 3 months. Linear mixed-effects models with multiple imputation were used to assess group differences.Results From March 2021 to April 2024, we randomized 253 caregivers, of whom 244 were analyzed (ERT-C = 124; CBT-C = 120), and enrolled 95 patients (ERT-C = 47; CBT-C = 48), of whom 87 were analyzed. From pre- to post-treatment and through 6 months follow-up, caregivers in ERT-C did not improve significantly more than in CBT-C. Although there were significant between-group differences in patient physical and mental health, these effects did not persist after multiplicity adjustment. However, caregivers overall demonstrated significant improvements over time in anxiety, depression, worry, and QOL, and patients demonstrated significant improvements in perceived stress and emergency room visits.Conclusions Although ERT-C was not superior to CBT-C, caregivers showed meaningful psychosocial improvements overall, and patients improved on 2 outcomes. Future work will examine whether the 2 treatments differentially engage putative mechanisms leading to the observed clinical findings.Clinical trial registration This trial is registered on ClinicalTrials.gov (identifier: NCT04802720). Cancer caregivers-the parents, partners, children, siblings, and friends of patients with cancer-shoulder significant responsibilities and are at risk for anxiety and depression. While Cognitive Behavioral Therapy (CBT) has the strongest evidence to address anxiety and depression across various clinical populations, mixed findings among cancer caregivers may reflect the limitations of traditional CBT to address the unique distress experienced by this vulnerable population. Our group developed Emotion-Regulation Therapy for Cancer Caregivers (ERT-C), a CBT-based approach that targets worry and rumination and which may offer a particular benefit for caregivers above traditional CBT. This study compared the relative efficacy of 8 sessions of ERT-C compared to 8 sessions of Cognitive Behavioral Therapy for Cancer Caregivers (CBT-C), delivered over telehealth to 253 distressed caregivers of patients with all sites and stages of cancer. Our hypothesis that ERT-C would outperform CBT-C was not supported; both groups showed significant improvements in anxiety, depression, worry, and quality of life. There were also significant improvements across both groups among the patients for whom enrolled caregivers provided care in perceived stress and emergency room visits. Our results highlight a critical lesson: For distressed caregivers of patients with cancer, engagement in any evidence-based CBT-informed intervention targeting caregiver-specific distress may be beneficial. For distressed caregivers of patients with cancer, engagement in any evidence-based CBT-informed intervention targeting caregiver-specific distress may be beneficial.

OBJECTIVES:This research sought to explore the applicability of MCP within Aotearoa New Zealand. The objectives of this study were to investigate Indigenous patients' experiences of an MCP trial and Indigenous therapists' experiences of recruitment and MCP delivery within the trial. METHODS:Semi-structured interviews were conducted with 2 Indigenous patients with advanced cancer receiving MCP, 1 Indigenous support person, and 4 Indigenous health psychologists delivering MCP about their experience in the research trial. Participants were also asked their views on recruiting Indigenous populations into research trials, and on the applicability of MCP in Aotearoa New Zealand. Reflective thematic analysis was utilized to analyze interview transcripts. RESULTS:This study showed that trust is central to recruiting Indigenous populations into research trials and contributed to the overall success of MCP delivery. Participants highlighted community trust and organizational mistrust as potential contributors toward recruitment challenges. Trust in the self, in others, and in culture was central to finding meaning through MCP. When conducted in a safe patient-centered therapeutic space, MCP concepts and meaning-making can integrate effectively into Te Ao Māori and an Indigenous context. SIGNIFICANCE OF RESULTS:MCP concepts and delivery may integrate well into a Te Ao Māori framework. Care should be taken in future delivery of MCP within Aotearoa New Zealand, ensuring the patient-focused nature of the therapeutic modality is maintained, and the patient's own connection with culture is the highest priority.

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.

Emerging and young adult caregivers (EYACs, aged 18-35) of a parent with cancer are an understudied, under-resourced, and growing caregiving population. Little is known about their experiences coping with and managing uncertainty about their parent's prognosis, which is even more distressing when their parent is living with advanced cancer. To better support EYACs' psychosocial needs and promote adaptive coping and adjustment, it is critical we understand what impacts their prognostic uncertainty as their parent's disease progresses. Thus, we conducted interviews with recently bereaved EYACs (N = 33) of a parent with advanced cancer who died within 12 months after diagnosis using the Retrospective Interview Technique (RIT), where participants identify any events that caused a change in their prognostic uncertainty (i.e., turning points) between their parent's diagnosis and death by plotting them on a graph. Participants' graphs were used to guide their interview, which also captured the context and meaning of each turning point (TP). RIT graphs and interview transcripts were thematically analyzed, and a typology of 5 TP types emerged: medical events, observable condition changes, online research, clinical communication, and family communication. EYACs also characterized how TP timing mattered: TPs that occurred early in the cancer trajectory that influenced EYACs' beliefs about their parent's prognosis informed their positive or negative interpretations of future TPs. Findings highlight the significant role communication plays in EYACs' prognostic uncertainty and provide key insights for future psychosocial interventions to better support this underrepresented, unsupported population of caregivers.

BACKGROUND:Hematopoietic stem cell transplantation (HCT) is an intensive and invasive procedure used in cancer treatment that depends heavily on the involvement of caregivers and places them at high risk for posttraumatic stress disorder (PTSD) symptoms. These symptoms are frequently overlooked in oncology and general health care settings. The suitability and utility of the Primary Care PTSD Screen for DSM-5 (PC-PTSD-5) within cancer caregivers remains uncertain. This study sought to evaluate its performance as a brief (five-item) case finding screening alternative to the longer (20-item) PTSD Checklist for DSM-5 (PCL-5) in caregivers of survivors who received an HCT 1-5 years ago. METHOD:A total of 106 caregivers completed the PC-PTSD-5 and PCL-5 during recruitment for a randomized clinical trial. Optimal cut scores for identifying probable PTSD and item performance were determined using indices correcting for chance and item response theory analyses. RESULTS:Of the caregivers evaluated, 33% screened as positive for probable DSM-5 PTSD using the PCL-5. The PC-PTSD-5 exhibited acceptable internal consistency and significant associations with PCL-5 scores (total, r = 0.79; items r [range] [0.60-0.69]). A cutoff score of 3 provided optimal sensitivity for screening (κ[Se] = 1). Item response theory analyses indicated the need for the complete PC-PTSD-5 items to provide the greatest information across varying levels of PTSD. CONCLUSION:Although not an instrument validation study, these findings provide preliminary support for using the PC-PTSD-5 as a succinct, effective screening tool among cancer caregivers in a clinical context.

BACKGROUND:Patients receiving palliative or hospice care and their caregivers frequently experience depression, anxiety, hopelessness, and fear of death. While previous reviews sought to clarify the impact of psychotherapy interventions for individuals receiving palliative and hospice care, none focused on the impact of psychotherapeutic interventions delivered by mental health professionals with formal psychotherapy training to all populations impacted. The aim of the present study was to systematically review the literature evaluating the efficacy of various psychotherapeutic interventions administered by mental health professionals, delivered to patients, their caregivers, and patient-caregiver dyads targeting a diverse set of outcomes. METHODS:We conducted a systematic review of the literature to examine specific forms of psychotherapy support delivered by mental health professionals with formal psychotherapy training, assessed by validated quantitative instruments, offered to patients receiving palliative or hospice care, their caregivers, and patient-caregiver dyads. Risk of bias was assessed by either the Cochrane risk of bias assessment for randomized-controlled trials (RCTs), or the Newcastle-Ottawa Quality Assessment Form for Cohort studies for pilot/feasibility studies. RESULTS:Twenty-seven studies met the criteria for inclusion in our final review after title/abstract and full-text screening. A wide variety of psychotherapeutic modalities and clinical outcomes were captured. Existential-phenomenological and life review/memory specificity therapy had the strongest current evidence base. Studies of cognitive behavioral therapy and dignity therapy (DT) almost uniformly found no significance in outcomes. CONCLUSIONS:While often well-tolerated and appreciated, psychotherapy administered by mental health professionals with formal psychotherapy training inconsistently improves objective outcomes for patients receiving palliative care, their caregivers, and patient-caregiver dyads-a demographic uniquely impacted by advanced disease states and subsequent existential distress. Studies that utilized mixed-effect model intention-to-treat analyses to account for loss to follow-up and blinding approaches like delayed intervention for control groups were rated as high quality.

BACKGROUND:Family caregivers of patients undergoing hematopoietic stem cell transplantation (HSCT) experience significant challenges (e.g., witnessing suffering and experiencing loss and uncertainty) that contribute to existential distress and poor psychosocial outcomes. Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C) is a palliative-based intervention that targets existential distress by helping caregivers connect to sources of meaning in their lives. AIMS:Test the feasibility and acceptability of nurse-delivered Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C) for caregivers of hematopoietic stem cell transplantation (HSCT) recipients. METHODS:Single-arm pilot trial of 7-session palliative-based intervention delivered via Zoom/telephone. We enrolled 32 caregivers of adult autologous/allogeneic HSCT recipients at a tertiary care academic center. Feasibility was assessed by (1) ability to recruit 32 caregivers within the 20-month study enrollment period, (2) percentage who consented, (3) completed 4 or more intervention sessions, and (4) percentage who remained on study. Acceptability of MCP-C was assessed with Likert scale items and through exit interviews. FINDINGS:We approached 90 caregivers in 11 months to recruit target sample of 32; 90.6% (n = 29) completed all sessions/assessments; 96% (n = 31) met benchmark of 4 sessions. In exit interviews (n = 22), participants endorsed the (1) value of MCP-C, (2) nurse interventionist's knowledge of transplant care, and (3) convenience of telehealth delivery. CONCLUSIONS:Nurse-delivered MCP-C via telehealth is feasible and acceptable for caregivers of HSCT recipients. A future randomized controlled trial is needed to fully evaluate the intervention's effect on caregiver outcomes.

BACKGROUND:Emerging and young adult caregivers (EYACs) who provide care to a parent with advanced cancer are underrepresented in caregiving scholarship, and yet, are not uncommon. Little is known about the psychosocial impacts of caring for a parent at this age or how EYACs manage their uncertainty regarding their own, potentially elevated, future cancer risk. AIMS:To employ Uncertainty Management Theory (UMT) to examine how bereaved EYACs of a parent who died of advanced cancer appraise and manage their uncertainty regarding their personal cancer risk. METHODS:We conducted a secondary analysis of in-depth, semi-structured interviews with EYACs (age 18-35) who cared for a parent who died of advanced cancer (n = 33) < 5 years prior. The interviews were transcribed and thematically analyzed. RESULTS:Some EYACs described appraising their cancer risk uncertainty as an opportunity and were motivated to reduce their risks through behavior choices. Others appraised it as a danger and experienced anxiety, paranoia, and fatalism about their risk. Others described their parents' cancer as "just bad luck," believing it to be a random anomaly that could not impact their cancer risk and reported no changes in their appraisal of their cancer risk uncertainty. CONCLUSIONS:EYACs' opportunity and danger appraisals align with studies of high hereditary risk populations but reporting no change in cancer risk uncertainty is unique. The long-term health implications of appraising their parent's cancer as a random occurrence, disconnected from their personal risk, remain unknown. Future research should seek to help both bereaved and active EYACs better understand their cancer risk and manage their uncertainty.

Single-session interventions (SSIs) are mental health (MH) interventions that intentionally involve a single encounter. In this commentary, we outline issues with existing models of MH care for older adults & their care partners, how SSIs can address barriers, and considerations for research. We encourage the development of SSIs to increase accessibility, scalability, participation, and cost-effectiveness of mental health interventions.

Introduction Caregivers of patients undergoing haematopoietic stem cell transplantation (HSCT) experience tremendous psychological distress before, during and after HSCT. However, few interventions are tailored to the protracted needs of these caregivers while considering scalability and accessibility. We previously developed an evidence-based intervention for caregivers of patients undergoing HSCT that improved quality of life (QOL), caregiving burden and mood. We have since adapted this clinician-delivered intervention into a self-administered, digital health application (BMT-CARE app) and are currently evaluating the effect of this intervention on QOL in caregivers of patients receiving HSCT.Methods and analysis The study design is a non-blinded randomised controlled trial of a digital health intervention for caregivers of patients undergoing HSCT at the Massachusetts General Hospital Cancer Center. We are enrolling and randomising 125 caregivers to receive the BMT-CARE app or usual care in a 1:1 assignment, stratifying by transplant type (autologous vs allogeneic). Caregivers assigned to the BMT-CARE app complete five self-guided modules designed to improve coping and stress management prior to and up to 60 days post-HSCT. The modules include interactive, gamified features and video vignettes to optimise engagement. Participants complete questionnaires at baseline and days 10, 60 and 100 post-HSCT. The primary outcome is comparison of QOL at day 60 post-HSCT. Secondary outcomes include caregiver burden, anxiety and depression symptoms, as well as post-traumatic stress symptoms. We are also exploring the usability of the BMT-CARE app to inform refinements prior to future testing.Ethics and dissemination The study is funded by the Leukemia and Lymphoma Society and approved by the Dana-Farber/Harvard Cancer Center Institutional Review Board (Protocol #22–634 v.1.5). The results of this study will be reported in accordance with the Consolidated Standards of Reporting Trials statement for non-pharmacological trials. Results will be disseminated at scientific meetings and in peer-reviewed journals.Trial registration number NCT05709912; Pre-results.