Integrating family caregivers in older adults' hospital stays: a needed cultural shift.

OBJECTIVES: This study aimed to examine perceived barriers and facilitators to caregiver inclusion in the hospital care of older adult family members or friends through the perspectives of (1) hospitalized older adults, (2) caregivers of a hospitalized older adult, (3) healthcare clinicians, and (4) policymakers. METHODS: This qualitative descriptive exploratory study utilized semi-structured interviews with N = 24 participants and was analyzed using a framework method. RESULTS: Eight codes arose that were categorized into four domains guided by the Social Ecological Model. Individual-level factors were determined both for the caregiver and for the clinician. Relationship-level factors were revealed pertaining to communication style and method. Hospital-level factors included hospital environment and resources. Societal-level factors included healthcare climate and policies. DISCUSSION: Findings indicated that hospital workflows and policies inadequately support family caregivers. This study highlights potential solutions to caregivers' integration into hospital workflows.

PAM trial protocol: a randomised feasibility study of psychedelic microdosing-assisted meaning-centred psychotherapy in advanced stage cancer patients.

BACKGROUND: An advanced cancer diagnosis can be associated with a significant profile of distress. Psychedelic compounds have shown clinically significant effects in the treatment of psychological distress in patients with advanced-stage cancer. Given the challenges of delivering timely and effective intervention in the advanced cancer context, it is possible that an alternative, more pragmatic, approach lies in psychedelic 'microdosing'. Microdosing refers to repeated administration of psychedelics in sub-hallucinogenic doses. The purpose of this study is to evaluate the feasibility of conducting a full-scale randomised controlled trial comparing psychedelic microdose-assisted-meaning-centred psychotherapy (PA-MCP) to standard meaning-centred psychotherapy (MCP) in New Zealand indigenous (Maori) and non-indigenous people with advanced cancer and symptoms of anxiety and/or depression. Although MCP is a well-established psychotherapeutic treatment in advanced cancer populations, the potential efficacy and effectiveness of this therapy when delivered alongside a standardised microdose regimen of a psychedelic compound have not been investigated. METHODS: Participants with advanced-stage cancer and symptoms of anxiety and/or depression (N = 40; 20 Maori, 20 non-Maori) will be randomised under double-blind conditions to receive 7 sessions of MCP alongside 13 doses of either an LSD microdose (4-20 µg) (PA-MCP) or inactive placebo (placebo-MCP). The feasibility, acceptability, and safety of this intervention and physiological and psychological measures will be recorded at baseline, at each session of MCP, and at a 1-month and 6-month follow-up. DISCUSSION: Our findings will evaluate the feasibility, acceptability, and safety of a larger randomised controlled trial and provide an initial indication of the potential benefits of psychedelic microdosing for psychological distress in advanced-stage indigenous and non-indigenous cancer patients. TRIAL REGISTRATION: NZCTR, ACTRN12623000478617. Registered 11 May 2023.  https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=385810&isReview=true .

A randomized controlled trial of a distress screening, consultation, and targeted referral system for family caregivers in oncologic care.

OBJECTIVE: Distress screening is standard practice among oncology patients, yet few routine distress screening programs exist for cancer caregivers. The objective of this study was to demonstrate the feasibility, acceptability, and preliminary efficacy of Cancer Support Source-CaregiverTM (CSS-CG, 33-item), an electronic distress screening and automated referral program with a consultation (S + C) to improve caregiver unmet needs, quality of life, anxiety, depression, and distress relative to Enhanced Usual Care (EUC; access to educational materials). METHOD: 150 caregivers of patients with varying sites/stages of cancer were randomized to S + C or EUC and completed assessments at baseline, 3-months post-baseline, and 6-months post-baseline. A subset of participants (n = 10) completed in-depth qualitative interviews. RESULTS: S + C was feasible: among 75 caregivers randomized to S + C, 66 (88%) completed CSS-CG and consultation. Top concerns reported were: (1) patient's pain and/or physical discomfort; (2) patient's cancer progressing/recurring; and (3) feeling nervous or afraid. Differences between groups in improvements on outcomes by T2 and T3 were modest (ds < 0.53) in favor of S + C. Qualitative data underscored the helpfulness of S + C in connecting caregivers to support and helping them feel cared for and integrated into cancer care. CONCLUSIONS: S + C is feasible, acceptable, and yields more positive impact on emotional well-being than usual care. Future studies will examine programmatic impact among caregivers experiencing higher acuity of needs, and benefits of earlier integration of S + C on caregiver, patient, and healthcare system outcomes.

"A little bit different now": Impacts of caregiving for parent with cancer on psychosocial development in emerging and young adulthood.

Serving as a family caregiver for, and ultimately losing, a parent with advanced cancer in emerging and young adulthood has substantial, life phase-specific implications for psychosocial development. This qualitative study characterizes domains of psychosocial development impacted by cancer caregiving and parental death in this life phase. As part of a larger study, 33 bereaved emerging/young adult caregivers of parents who died following advanced cancer completed semi-structured interviews. A thematic analysis leveraging the constant comparative method was conducted by two coders and generated three themes, which described impacts of caregiving on: identity, life path, and relational intimacy and roles. Analyses also defined specific outcomes within these domains. Findings suggest that cancer caregiving-loss experiences can greatly influence developmental pursuits in this life phase. Findings validate a range of possible psychosocial impacts these caregivers may experience and can guide development of supportive resources for this growing subgroup of bereaved family caregivers.

Intolerance of uncertainty, experiential avoidance, and trust in physician: a moderated mediation analysis of emotional distress in advanced cancer.

We tested whether patients' trust in physician moderated the hypothesized indirect association between intolerance of uncertainty (IU; inability to tolerate the unknown) and emotional distress through the mediator, experiential avoidance (EA; efforts to avoid negative emotions, thoughts, or memories), in patients with advanced cancer. The sample included 108 adults with Stage III or IV cancer (53% female; Mage = 63 years) recruited from a metropolitan cancer center. All constructs were measured by standardized self-report instruments. The PROCESS macro for SPSS tested the moderated mediation model. IU evidenced significant direct and indirect relationships with anxiety and depressive symptoms. Trust in physician moderated the indirect relationship between IU and anxiety (not depressive symptoms), albeit in an unexpected direction. Specifically, the indirect relationship between IU and anxiety symptoms through EA was significant for those with moderate to high physician trust but not low trust. Controlling for gender or income did not change the pattern of findings. IU and EA may be key intervention targets, particularly in acceptance-or meaning-based interventions for patients with advanced cancer.

Existential distress in family caregivers: scoping review of meaning-making interventions.

OBJECTIVES: Family and friend caregivers often feel overwhelmed by and ill-prepared for their responsibilities. Many feel helpless living with uncertainty about the outcome of the patient's illness, which leads to existential distress. Supportive care interventions that address existential distress by promoting meaning and purpose buffer the negative effects of caregiver burden and promote resilience and growth. The purpose of this scoping review is to describe the depth and breadth of available interventions targeting caregiver existential distress. METHODS: We followed the Joanna Briggs Institute's scoping review methods and applied the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension checklist. SCOPUS, Ovid MEDLINE and PsycINFO databases were searched for interventions that targeted existential distress by promoting meaning-making, spiritual well-being, post-traumatic growth and/or benefit finding for caregivers of seriously ill adult patients. RESULTS: We screened 1377 titles/abstracts and 42 full-text articles. Thirty-one articles (28 unique studies) met inclusion criteria. Most interventions were designed for caregivers supporting patients with cancer (n=14) or patients receiving palliative care (n=9). Promising interventions included Meaning-Centered Psychotherapy for Cancer Caregivers, Meaning-Based Intervention for Patients and their Partners, Legacy Intervention for Family Enactment, Family Participatory Dignity Therapy and Existential Behavioural Therapy. More than half of the studies (n=20, 64%) were in the feasibility/acceptability/pilot stage of intervention testing. CONCLUSION: Large randomised controlled trials with more diverse samples of caregivers are needed. Future research should explore the impact of delivering meaning-making interventions to caregivers throughout the illness trajectory. Developing strategies for scaling up and conducting cost analyses will narrow the research and practice gap for meaning-making interventions.

Developing a national implementation strategy to accelerate uptake of evidence-based family caregiver support in U.S. cancer centers.

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Family Caregivers.

Family and friend caregivers play critical roles in ensuring that persons with serious illness receive high-quality care, and their responsibilities often increase as patients transition from receiving solely curative-focused care to primarily palliative-focused care. Integrating family caregivers into the health care team and supporting them in their role has significant benefits for family caregivers, patients, health care systems, communities, and society. Palliative care clinicians across all disciplines are uniquely suited to provide necessary training and support to family caregivers as they navigate the demands of their role. Here, we contend that providing comprehensive palliative care includes addressing the needs of family caregivers and provide ten tips and practical guidance to assist palliative care clinicians to support family caregivers. Engaging family caregivers as partners in care will ultimately allow palliative care clinicians to deliver the highest quality patient care and ensure the best possible outcomes for families facing serious illnesses.

Understanding the role of parents' information sharing and withholding on emerging and young adults' caregiving and coping during their parents' advanced cancer.

Emerging and young adult caregivers (EYACs) who provide care to their parents are a hidden, unsupported population of caregivers. Research identifies information sharing or withholding as a key aspect of caregivers' ability to cope and adjust, which may be especially critical when a parent is diagnosed with advanced cancer. The goal of this study was to examine the impact of parent information sharing/withholding on EYACs' caregiving and coping experiences. We conducted in-depth, semi-structured interviews with 33 EYACs between the ages of 18-35 who cared for a parent that died of advanced cancer. Interview transcripts were thematically analyzed. Three factors played a role in how parents' information sharing/withholding affected EYACs' caregiving/coping: 1) topic, 2) timing, and 3) who is included. Findings highlight the adaptive functioning of parents' information sharing and negative outcomes associated with information withholding, illustrating how parents' disclosure decisions function to promote or inhibit EYACs' care involvement and coping.

Availability of Family Caregiver Programs in US Cancer Centers.

Importance: Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support cancer caregivers have been developed and tested over the past 2 decades. However, there are few system-level data on whether US cancer centers have adopted and implemented these interventions. Objective: To describe and characterize the availability of family caregiver support programs in US cancer centers. Design, Setting, and Participants: This cross-sectional national survey study was conducted between September 1, 2021, and April 30, 2023. Participants comprised clinical and administrative staff of Commission on Cancer-accredited US cancer centers. Data analysis was performed in May and June 2023. Main Outcomes and Measures: Survey questions about the availability of 11 types of family caregiver programs (eg, peer mentoring, education classes, and psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Family caregiver programs were defined as structured, planned, and coordinated groups of activities and procedures aimed at specifically supporting family caregivers as part of usual care. Survey responses were tabulated using standard descriptive statistics, including means, proportions, and frequencies. Results: Of the surveys sent to potential respondents at 971 adult cancer centers, 238 were completed (response rate, 24.5%). After nonresponse weight adjustment, most cancer centers (75.4%) had at least 1 family caregiver program; 24.6% had none. The most common program type was information and referral services (53.6%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (χ2 = 11.10; P = .011). Few centers had caregiver programs on training in medical and/or nursing tasks (21.7%), caregiver self-care (20.2%), caregiver-specific distress screening (19.3%), peer mentoring (18.9%), and children caregiving for parents (8.3%). Very few programs were developed from published evidence in a journal (8.1%). The top reason why cancer centers selected their programs was community members requesting the program (26.3%); only 12.3% of centers selected their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.6%) or by philanthropy (42.4%). Conclusions and Relevance: In this survey study, most cancer centers had family caregiver programs; however, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence based, with few centers offering caregiving education and training. These findings suggest that implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions.

Interest in and Barriers to Practicing Yoga among Family Caregivers of People with Cancer.

Background: Family caregivers of people with cancer report high levels of psychological distress. Yoga, with well-documented mental health benefits, could be a useful intervention to address distress in this population. However, little is known about yoga practices among cancer caregivers. The present study evaluates their interest in and barriers to yoga practice. Methods: We conducted a cross-sectional survey study of family caregivers of cancer patients at five suburban satellite locations of an academic cancer center. Survey items and statistical analyses focused on yoga usage as well as interest in and barriers to yoga practice. Results: Among 539 participants, most were females (64.8%), white (84.2%), and caring for a spouse or partner (54.7%). Interest in practicing yoga among study participants was 42.3%. Increased interest was independently associated with being females (odds ratio [OR] = 3.30, 95% confidence interval [CI] = 1.98-5.51, P < 0.001) and employed (part-time: OR = 2.58, 95% CI = 1.1-6.18, P = 0.03; full-time: OR = 1.77, 95% CI = 1.1-2.01, P = 0.02). Few participants (6.3%) were currently practicing yoga, although 31% had done so in the past. Sixty-one percent of those who had practiced before their loved one's diagnosis stopped practicing yoga afterward. Commonly cited barriers to yoga practice included time constraints (37.3%) and psychological obstacles (33.6%). About a quarter of those who had never practiced yoga lacked awareness of yoga's benefits (26.6%). Conclusion: Despite the low use of yoga, interest in practicing was moderately high, especially among women and employed caregivers. As caregivers face numerous barriers to yoga practice, strategies are needed to overcome these barriers and help them access yoga's health benefits.

Psychosocial assessment practices for hematopoietic stem cell transplantation: a national survey study.

Psychosocial health predicts and contributes to medical outcomes for patients undergoing hematopoietic stem cell transplantation (HSCT). Yet, there are no standards for psychosocial assessments or support for both patients and caregivers across the care continuum. To examine the current state of psychosocial care, clinicians were sent a survey of their psychosocial assessment practices for patients and caregivers undergoing HSCT via the Listservs of professional organizations. Descriptive statistics and bivariate analyses were performed to summarize the findings. While 96% of participants reported routine pre-HSCT psychosocial assessment of patients, only 10.6% routinely used a validated transplant risk-assessment measure. Just 27% routinely performed follow-up psychosocial assessments. In contrast, only 47% of participants routinely assessed the psychosocial needs of family caregivers pre-HSCT, and 13% routinely performed follow-up assessments for caregivers. Most (90%) reported social workers were the primary providers of assessments. While patient-report measures were used for evaluation, the majority of assessments were clinical interviews. No significant differences were found between programs that treated adult and pediatric patients versus those only treating adult patients. Our findings highlight the lack of standard psychosocial practices for patients and family caregivers undergoing HSCT and we offer recommendations to fill this gap.

Psychosocial Assessment Practices for Hematopoietic Stem Cell Transplantation: A National Survey Study.

Psychosocial health predicts and contributes to medical outcomes for patients undergoing hematopoietic stem cell transplantation (HSCT). Yet, there are no standards for psychosocial assessments or support for both patients and caregivers across the care continuum. To examine the current state of psychosocial care, clinicians were sent a survey of their psychosocial assessment practices for patients and caregivers undergoing HSCT via the Listservs of professional organizations. Descriptive statistics and bivariate analyses were performed to summarize the findings. While 96% of participants reported routine pre-HSCT psychosocial assessment of patients, only 10.6% routinely used a validated transplant risk-assessment measure. Just 27% routinely performed follow-up psychosocial assessments. In contrast, only 47% of participants routinely assessed the psychosocial needs of family caregivers pre-HSCT, and 13% routinely performed follow-up assessments for caregivers. Most (90%) reported social workers were the primary providers of assessments. While patient-report measures were used for evaluation, the majority of assessments were clinical interviews. No significant differences were found between programs that treated adult and pediatric patients versus those only treating adult patients. Our findings highlight the lack of standard psychosocial practices for patients and family caregivers undergoing HSCT and we offer recommendations to fill this gap.

How patients with advanced cancer conceptualize prognosis: A phenomenological qualitative inquiry.

BACKGROUND: Despite the importance of accurate prognostic understanding in patients with advanced cancer, there is little consensus around how to conceptualize and measure the multidimensional construct. Most studies focus on single aspects of prognostic understanding (e.g., curability) that clinicians have identified as important; no previous research has asked patients how they define "prognosis." AIM: The present study examined how patients with advanced cancer conceptualize their "prognosis." It also explored how patients assigned value to prognostic information and the impact of prognosis on life perspectives. DESIGN: A phenomenological approach was used to analyze semi-structured interviews with individuals with advanced cancer to examine how patients define prognosis. SETTING/PARTICIPANTS: English and Spanish-speaking patients with advanced cancer (N = 29) were recruited from ambulatory clinics at a comprehensive cancer center in New York City. RESULTS: To conceptualize prognosis, patients focused on concrete medical data, anticipated survival and quality of life, impact on meaningful life events, uncertainty, and physician affect. They discussed the importance of maintaining normalcy despite prognosis, knowledge as a form of coping, information reframing, and altered decision-making as means of coping with prognostic information. CONCLUSIONS: Given the range of ways patients define prognosis and assign value to prognostic information, clinicians should incorporate a thorough assessment of patient information preferences, values, and coping styles when engaging in end-of-life discussions. Trainings should emphasize the importance of nonverbal cues (i.e., affect management, body language) in prognostic disclosure.

A Mixed-Methods Feasibility Study: Eliciting ICU Experiences and Measuring Outcomes of Family Caregivers of Patients Who Have Undergone Hematopoietic Stem Cell Transplantation.

The impact of an intensive care unit (ICU) admission on family caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT) has not been well described. Aims of this study were to determine the feasibility of conducting research with family caregivers of HSCT patients during an ICU admission and generate preliminary data about their experiences and engagement in care. Using a mixed-methods, repeated measures design, we collected data from family caregivers after 48 hr in the ICU (T1) and at 48 hr after transferring out of ICU (T2). Enrolling HSCT caregivers in research while in the ICU was feasible (10/13 consented; 9/10 completed data collection at T1); however, data collection at T2 was not possible for most caregivers. Caregiver distress levels were high, and engagement in care was moderate. The three themes that emerged from interviews (n = 5) highlighted that although HSCT family caregivers faced many challenges and received limited support during their ICU experience, they were able to access their own personal resources and demonstrated resilience.

Characteristics of Distress and Support Group Participation in Caregivers of Older Allogeneic Hematopoietic Cell Transplantation Patients: A Single Institution Retrospective Review.

Older patients with hematologic malignancies are increasingly considered for allogeneic hematopoietic cell transplant (allo-HCT). However, older patients often have increased comorbidities and thus may require an increased level of post-transplant care. These factors can contribute to increased caregiver distress, which has been associated with worsened health outcomes for caregivers and patients. To examine predictors of caregiver distress and support group participation in caregivers of older allo-HCT patients, we retrospectively reviewed charts of 208 patients aged 60 and older who underwent their first allo-HCT at our institution from 2014 through 2016. We systematically characterized and identified the incidence of caregiver distress and attendance in a caregiver support group from the start of conditioning through 1 year post allo-HCT. Evidence of caregiver distress and support group participation was recorded by reviewing clinical and/or social work documentation. We found that 20 caregivers (10%) endorsed stress and 44 caregivers (21%) attended our support group at least once. A patient's prior history of psychiatric diagnosis (p = .046) or the use of potentially inappropriate medications for older adults (p = .046) was found to be associated with caregiver stress. Caregivers who were spouses or partners of patients (p = .048) or caregivers of married patients were more likely to attend the support group (p = .007). While limited by retrospective design and likely underreporting, this study reveals factors associated with caregiver distress in the older allo-HCT caregiver population. This information can help providers identify caregivers at risk for distress and improve caregiver resources, which may improve both caregiver and patient outcomes.

A Mixed-Method Examination of Emerging and Young Adult Cancer Caregivers' Experiences during the COVID-19 Pandemic.

Advanced cancer caregivers in emerging and young adulthood (EYACs; ages 18-35) are an understudied yet vulnerable caregiving population. The COVID-19 pandemic created new challenges for advanced cancer caregivers but also created unique contexts from which caregivers sometimes benefited. To understand how the pandemic may have positively and negatively impacted their caregiving and bereavement experiences, we examined EYACs' experiences of caring for and losing a parent with advanced cancer during the pandemic in comparison to those of EYACs with a parent who died outside the context of the pandemic. Eligible EYACs completed an online survey and semi-structured interview. Quantitative analyses compared responses for pre-pandemic EYACS (n = 14) and pandemic EYACs (n = 26). A thematic analysis of the interview transcripts of pandemic EYACS (n = 14) was conducted. Pandemic EYACs experienced non-significant but higher communal coping, benefit finding, negative emotional experiences, and caregiver strain than pre-pandemic EYACs. Thematic analysis revealed that the pandemic negatively affected EYACs' caregiving efficacy, personal well-being, interpersonal dynamics, and bereavement; shifts to remote work and schooling were reported as benefits. The findings can inform the design of resources to support EYACs whose parents died during the pandemic and who are navigating the healthcare system today.

Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.

CONTEXT: Prognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans. OBJECTIVES: To investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions. METHODS: We conducted secondary analyses of a cross-sectional study (PROSPECT, 2019-2021). Advanced cancer patients (median overall survival ≤12 months) from seven Dutch hospitals and caregivers completed structured surveys (n = 412 dyads). RESULTS: Seven percent of patient-caregiver dyads had discordant information preferences regarding the likelihood of cure; 24%-25% had discordant information preferences regarding mortality risk (5/2/1 year). Seventeen percent of dyads had discordant perceptions of the likelihood of cure; 12%-25% had discordant perceptions of mortality risk (5/2/1 year). Dyads with discordant prognostic information preferences (P < 0.05) and dyads in which patients reported better physical functioning (P < 0.01) were significantly more likely to perceive the one-year mortality risk discordantly. CONCLUSION: Physicians should be sensitive to discordant prognostic information preferences and prognostic perceptions among patient-caregiver dyads in advanced cancer care.