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.

Perceptions of prognosis and end-of-life care outcomes in patients with advanced lung and gastrointestinal cancer.

BACKGROUND: Many patients with advanced cancer have misperceptions of their prognosis, which may impact end-of-life decision-making. Data regarding associations between prognostic perceptions over time and end-of-life care outcomes are lacking. AIM: To describe patients' perceptions of their prognosis with advanced cancer and examine associations between these perceptions and end-of-life care outcomes. DESIGN: Secondary analysis of longitudinal data from a randomized controlled trial of a palliative care intervention for patients with newly diagnosed incurable cancer. SETTING/PARTICIPANTS: Conducted at an outpatient cancer center in the northeastern United States and patients were within 8 weeks of a diagnosis with incurable lung or non-colorectal gastrointestinal cancer. RESULTS: We enrolled 350 patients in the parent trial, of which 80.5% (281/350) died during the study period. Overall, 59.4% (164/276) of patients reported they were terminally ill, and 66.1% (154/233) reported that their cancer was likely curable at the assessment closest to death. Patient acknowledgment of terminal illness was only associated with lower risk of hospitalizations in the last 30 days of life (OR = 0.52, p = 0.025). Patients who reported their cancer as likely curable were less likely to utilize hospice (OR = 0.25, p = 0.002) or die at home (OR = 0.56, p = 0.043), and they were more likely to be hospitalized in the last 30 days of life (OR = 2.28, p = 0.011). CONCLUSIONS: Patients' perceptions of their prognosis are associated with important end-of-life care outcomes. Interventions are needed to enhance patients' perceptions of their prognosis and optimize their end-of-life care.

Advancing family science and health equity through the 2022-2026 National Institute of Nursing Research strategic plan.

BACKGROUND: Consistent with the National Institute of Nursing Research's mission of leading nursing research to address current health challenges, the new Strategic Plan identifies five research lenses: health equity, social determinants of health, population and community health, prevention and health promotion, and systems and models of care. Family research, central to nursing research and practice, is the cornerstone of social ecology and represents a critical intersection of social and structural determinants of health. PURPOSE: We argue why family health is essential to the 2022-2026 Strategic Plan and how the lenses can strengthen family research. METHODS: Drawing from collective expertise and existing literature in family research, sociology, psychology, and nursing science, the authors present a new conceptual model that integrates structural racism and heteropatriarchy to examine the salience of family structure statuses for family outcomes and discuss approaches to research design, empirical measurement, and interpretation in order to bring this new model into practice. DISCUSSION: The NINR Strategic Plan has the potential to dismantle structures that perpetuate racism and health inequity within and across family structures. An underaddressed research area under the new Strategic Plan relates to how social determinants of health influence and are influenced by families. CONCLUSION: We challenge all investigators, not just family scientists, to expand the scope of their research to conceptualize the role of family on health inequities.

Nurse scholars of the Robert Wood Johnson Foundation Harold Amos Medical Faculty Development Program.

BACKGROUND: The challenge to increase the diversity, inclusivity, and equity of nurse scientists is a critical issue to enhance nursing knowledge development, health care, health equity, and health outcomes in the United States. PURPOSE: The purpose of this paper is to highlight the current nurse scholars in the Robert Wood Johnson Foundation (RWJF) Harold Amos Medical Faculty Development Program (AMFDP). DISCUSSION: Profiles and the programs of research and scholarship of the current AMFDP nurse scholars are described and discussed. Scholars share lessons learned, and how the AMFDP program has influenced their thinking and commitments to future action in service of nursing science, diversity efforts, legacy leadership, issues of health equity. CONCLUSION: RWJF has a history of supporting the development of nursing scholars. AMFDP is an example of legacy leadership program that contributes to a culture of health and the development of next-generation nursing science scholars.

Psychosocial issues and quality of life of parenting partners of young women with breast cancer.

PURPOSE: Data are lacking about the association between quality of life (QOL) and psychosocial issues of partners of young women with breast cancer who co-parent dependent children. METHODS: We conducted a cross-sectional analysis of partners of women with breast cancer diagnosed at age ≤ 40. Among those partners reporting at least one dependent child under 18 years old at the time of diagnosis, we used multiple linear regression to examine associations between partner QOL and sociodemographic and psychosocial factors, and the patient's cancer stage and time since diagnosis. RESULTS: Of the 219 parenting partners, all identified as male with a median age of 44 years; 96% (204/213) reported working full-time at the time of the survey. Fifty-four percent endorsed behaviors indicating maladaptive coping. In adjusted analyses, less than full-time employment (ß = - 8.76; 95% CI = - 17.37, - 0.14), younger age (ß = - 0.35; 95% CI = - 0.069, - 0.02), greater parenting concerns (ß = 0.56; 95% CI = 0.36, 0.75), clinically relevant anxiety symptoms (ß = 13.79; 95% CI = 10.24, 17.35), lower post-traumatic growth score (ß = - 0.33; 95% CI = - 0.51, - 0.16), lower social support (ß = - 0.21; 95% CI = - 0.29, - 0.12), lower sexual satisfaction (ß = - 0.40; 95% CI = - 0.62, - 0.19), and breast cancer stages 3 (ß = 7.61; 95% CI = 0.19, 15.02) and 4 (ß = 12.63; 95% CI = 1.91, 23.34), when compared to stage 0, were associated with lower partner QOL. CONCLUSION: Parenting partners of young women with breast cancer have substantial unmet psychosocial needs. Interventions are needed to enhance QOL and promote adaptive coping for this population.

"I think that she would have wanted. . .": Qualitative interviews with bereaved caregivers reveal complexity in measuring goal-concordant care at the end of life.

BACKGROUND: Experts consider goal-concordant care an important healthcare outcome for individuals with serious illness. Despite their relationship to the patient and knowledge about the patient's wishes and values, little is known about bereaved family caregivers' perceptions of how end-of-life care aligns with patient goals and preferences. AIM: To understand caregivers' perceptions about patients' care experiences, the extent to which care was perceived as goal-concordant, and the factors that contextualized the end-of-life care experience. DESIGN: Qualitative interview study employing a semi-structured interview guide based on the National Health and Aging Trends Survey end-of-life planning module. Template analysis was used to identify themes. SETTING/PARTICIPANTS: Nineteen recently bereaved family caregivers of people with serious illness in two academic medical centers in the Northeastern United States. RESULTS: Most caregivers reported goal-concordant care, though many also recalled experiences of goal discordance. Three themes characterized care perceptions and related to perceived quality: communication, relationships and humanistic care, and care transitions. Within communication, caregivers described the importance of clear communication, inadequate prognostic communication, and information gaps that undermined caregiver confidence in decision making. Patient-clinician relationships enriched care and were considered higher-quality when felt to be humanistic. Finally, care transitions impacted goal discordance when marked by logistical barriers, a need to establish relationships with new providers, inadequate information transfer, and poor care coordination. CONCLUSIONS: Bereaved caregivers commonly rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Communication, relationships and humanistic care, and care transitions are modifiable quality improvement targets for patients with advanced cancer.

"It All Depends": Patient and Decision Partner Experiences in Cancer Clinical Trial Decision-Making.

While the supporting role of families and friends has been widely recognized in cancer care, little data exist on how they influence patients' decisions regarding clinical trial participation, accounting for patients' decisional preferences. The goal of our study was to examine the process of clinical trial decision-making from the perspective of adults with cancer and their decision partners. Semi-structured interviews were conducted with 12 patients and 12 decision partners-family and friends engaged in the medical decision-making. Themes included: (1) having the ability and confidence to make decisions; (2) gaining insight about clinical trials; (3) trusting someone in the process; and (4) realizing readiness and context. Our findings will enhance understanding of how patients make clinical trial decisions based on decisional preferences from the perspectives of patients and decision partners. The findings may also help to increase clinician awareness and inclusion of decision partners in conversations regarding clinical trials.

Association of Social Support With Overall Survival and Healthcare Utilization in Patients With Aggressive Hematologic Malignancies.

BACKGROUND: Social support plays a crucial role for patients with aggressive hematologic malignancies as they navigate their illness course. The aim of this study was to examine associations of social support with overall survival (OS) and healthcare utilization in this population. METHODS: A cross-sectional secondary analysis was conducted using data from a prospective longitudinal cohort study of 251 hospitalized patients with aggressive hematologic malignancies at Massachusetts General Hospital from 2014 through 2017. Natural Language Processing (NLP) was used to identify the extent of patients' social support (limited vs adequate as defined by NLP-aided chart review of the electronic health record). Multivariable regression models were used to examine associations of social support with (1) OS, (2) death or readmission within 90 days of discharge from index hospitalization, (3) time to readmission within 90 days, and (4) index hospitalization length of stay. RESULTS: Patients had a median age of 64 years (range, 19-93 years), and most were White (89.6%), male (68.9%), and married (65.3%). A plurality of patients had leukemia (42.2%) followed by lymphoma (37.9%) and myelodysplastic syndrome/myeloproliferative neoplasm (19.9%). Using NLP, we identified that 8.8% (n=22) of patients had limited social support. In multivariable analyses, limited social support was associated with worse OS (hazard ratio, 2.00; P=.042) and a higher likelihood of death or readmission within 90 days of discharge (odds ratio, 3.11; P=.043), but not with time to readmission within 90 days or with index hospitalization length of stay. CONCLUSIONS: In this cohort of hospitalized patients with aggressive hematologic malignancies, we found associations of limited social support with lower OS and a higher likelihood of death or readmission within 90 days of hospital discharge. These findings underscore the utility of NLP for evaluating the extent of social support and the need for larger studies evaluating social support in patients with aggressive hematologic malignancies.

Church leaders and parishioners speak out about the role of the church in advance care planning and end-of-life care.

OBJECTIVE: Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC). METHOD: Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes. RESULTS: Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs. SIGNIFICANCE OF RESULTS: The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.

Loneliness among cancer caregivers: A narrative review.

OBJECTIVE: Providing care to a loved one with cancer places demands on caregivers that result in changes to their daily routines and disruptions to their social relationships that then contribute to loneliness. Though caregivers' psychosocial challenges have been well studied, loneliness - a determinant of health - has not been well studied in this population. This narrative review sought to describe the current evidence on loneliness among caregivers of cancer patients. We aimed to (1) define loneliness, (2) describe its prevalence, (3) describe the association between loneliness and health outcomes, (4) describe risks and consequences of loneliness among cancer caregivers, (5) identify ways to assess loneliness, and (6) recommend strategies to mitigate loneliness in this unique population. METHOD: We used evidence from articles listed in PubMed, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases, book chapters, and reports. Articles were reviewed for the following inclusion criteria: (1) published in English, (2) caregivers of cancer patients, (3) loneliness as a study variable, and (4) peer-reviewed with no restriction on the timeframe of publication. Caregivers were defined as relatives, friends, or partners who provide most of the care and support for someone with cancer. RESULTS: Eighteen studies met inclusion criteria and were included in the analysis. Caregivers' experiences of loneliness can contribute to negative effects on one's social, emotional, and physical well-being. Social support interventions may not be sufficient to address this problem. Existing recommendations to mitigate loneliness include cognitive and psychological reframing, one-on-one and group therapy, befriending, resilience training, and technology-based interventions. SIGNIFICANCE OF RESULTS: Limited attention to loneliness in cancer caregivers poses a twofold problem that impacts patient and caregiver outcomes. Interventions are critically needed to address loneliness as a determinant of health in caregivers, given their pivotal role in providing care and impacting health outcomes for people with 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.

So what I'm stressed? A qualitative study examininga caregivers' reactions to emerging biomarkers of stress.

Background: Caregivers of adults with cancer often report significant distress yet remain difficult to engage in supportive services. While the field of Psychosomatic Medicine has continued to identify important markers of physiologic stress, and demonstrated disruption in these markers in caregiver populations, no research has investigated whether biomarker information on caregivers' reaction to stress could impact their willingness to address their ongoing distress. Methods: Here, we report on a qualitative study (N = 17) in which we conducted individual interviews with cancer caregivers to explore their key attitudes towards, and subjective experience of, mock stress biomarker data. A total of 17 caregivers of patients (M age = 56.1 years; SD = 12.3) with primarily metastatic brain tumors (glioblastoma) were interviewed regarding four commercially available biomarkers (telomere length; hair cortisol, activity levels and heart rate variability). Once presented with information about stress biomarkers, caregivers were asked to discuss their subjective reaction as if it was their own data as well as their motivation and willingness to seek support after receiving such information. We identified and extracted relevant themes. Results: Analysis utilizing the framework method revealed four emerging themes. The first theme described caregivers' ability to manage stress and willingness to engage with supportive services. Second, caregivers generally accepted the biomarker data but preferred it to be presented in a specific way. The third theme demonstrated that for some, biomarker data may actually increase their subjective distress (e.g., whether or not something could be done to improve their mental state). The last theme described how biomarkers were generally received as meaningful motivators that could increase caregivers' willingness to engage with supportive services. Conclusions: In addition to the more general identified theme of CG's willingness to engage with additional support, we gained insights into caregivers' reaction to the stress biomarkers presented. Findings will set the stage for the utility of stress biomarker information and whether it influences cancer caregivers' willingness to address their distress and motivation to engage in supportive services.

Cancer-Specific health equity metrics in the United States of America: A scoping review.

Health disparities in cancer care persist, and in some cases are growing, despite decades of research aimed at achieving equal outcomes for all Americans. There is growing consensus that reducing disparities will require a shift from aiming to provide care that is equal, to aiming to provide care that is equitable. The current landscape of metrics and interventions that move beyond equality (i.e., care provided equally to all patients) and towards equity (i.e., care provided variably and justly such that patients achieve equal outcomes) have not been characterized. Thus, the aim of this scoping literature review was to identify cancer-specific health equity metrics and interventions, and to explore current gaps in the field. Following PRISMA guidelines, PubMed, CINAHL, PsycInfo, and Scopus were searched for studies published in English between 2012 and 2022 that implemented a metric to identify or an intervention to address cancer care inequities in the United States. The search returned 36,724 unique articles, of which 40 articles (1%) included an intervention to advance health equity. Metrics included timeliness of screening and treatment, receipt of goal-concordant care, and survival. The vast majority of articles were cross-sectional or cohort studies that described health disparities using one or more outcome metrics. Gaps identified included research on receipt of guideline-concordant care, interventions addressing multiple levels of structural and social determinants of health, inclusion of children and families, and patient-reported outcomes or other sources of data that could help inform interventions to advance equity.

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.

Postdischarge Caregiver Burden Among Family Caregivers of Older Trauma Patients.

Importance: Caregiver burden, characterized by psychological distress and physical morbidity, affects more than 50 million family caregivers of older adults in the United States. Risk factors for caregiver burden among caregivers of older trauma patients have not been well characterized. Objective: To characterize postdischarge caregiver burden among caregivers of older trauma patients and identify targets that can inform interventions to improve their experience. Design, Setting, and Participants: This study used a repeated cross-sectional design. Participants were family caregivers for adults 65 years or older with traumatic injury who were discharged from 1 of 2 level I trauma centers. Telephone interviews were conducted at 1 month and 3 months postdischarge with family caregivers (identified by the patient as family or friends who provided unpaid care). Admissions occurred between December 2019 and May 2021, and data were analyzed from June 2021 to May 2022. Exposure: Hospital admission for geriatric trauma. Main Outcome and Measures: High caregiver burden was defined by a score of 17 or higher on the 12-item Zarit Burden Interview. Caregiver self-efficacy and preparedness for caregiving were assessed via the Revised Scale for Caregiving Self-Efficacy and Preparedness for Caregiving Scale, respectively. Associations between caregiver self-efficacy, preparedness for caregiving, and caregiver burden were tested via mixed-effect logistic regression. Results: There were 154 family caregivers enrolled in the study. Their mean (SD) age was 60.6 (13.0) years (range, 18-92 years), 108 of 154 were female (70.6%). The proportion of caregivers experiencing high burden (Zarit Burden Interview score ≥17) was unchanged over time (1 month, 38 caregivers [30.9%]; 3 months, 37 caregivers [31.4%]). Participants with lower caregiver self-efficacy and preparedness for caregiving were more likely to experience greater caregiver burden (odds ratio [OR], 7.79; 95% CI, 2.54-23.82; P < .001; and OR, 5.76; 95% CI, 1.86-17.88; P = .003, respectively). Conclusion and Relevance: This study found that nearly a third of family caregivers of older trauma patients experience high caregiver burden up to 3 months after the patients' discharge. Targeted interventions to increase caregiver self-efficacy and preparedness may reduce caregiver burden in geriatric trauma.

Prevalence of unpaid caregiving, pain, and depression in older seriously ill patients undergoing elective surgery.

INTRODUCTION: Serious illness is a life-limiting condition negatively impacting daily function, quality of life, or excessively straining caregivers. Over 1 million older seriously ill adults undergo major surgery annually, and national guidelines recommend that palliative care be available to all seriously ill patients. However, the palliative care needs of elective surgical patients are incompletely described. Understanding baseline caregiving needs and symptom burden among seriously ill older surgical patients could inform interventions to improve outcomes. METHODS: Using Health and Retirement Study data (2008-2018) linked to Medicare claims, we identified patients ≥66 years who met an established serious illness definition from administrative data and underwent major elective surgery using Agency for Healthcare Research and Quality (AHRQ) criteria. Descriptive analyses were performed for preoperative patient characteristics, including: unpaid caregiving (no or yes); pain (none/mild or moderate/severe); and depression (no, CES-D < 3, or yes, CES-D ≥ 3). Multivariable regression was performed to examine the association between unpaid caregiving, pain, depression, and in-hospital outcomes, including hospital days (days admitted between discharge date and one-year post-discharge), in-hospital complications (no or yes), and discharge destination (home or non-home). RESULTS: Of the 1343 patients, 55.0% were female and 81.6% were non-Hispanic White. Mean age was 78.0 (SD 6.8); 86.9% had ≥2 comorbidities. Before admission, 27.3% of patients received unpaid caregiving. Pre-admission pain and depression were 42.6% and 32.8%, respectively. Baseline depression was significantly associated with non-home discharge (OR 1.6, 95% CI 1.2-2.1, p = 0.003), while baseline pain and unpaid caregiving needs were not associated with in-hospital or post-acute outcomes in multivariable analysis. CONCLUSIONS: Prior to elective surgery, older adults with serious illnesses have high unpaid caregiving needs and a prevalence of pain and depression. Baseline depression alone was associated with discharge destinations. These findings highlight opportunities for targeted palliative care interventions throughout the surgical encounter.

Family Caregiver Experiences in the Inpatient and Outpatient Reduced-Intensity Conditioning Allogeneic Hematopoietic Cell Transplantation Settings: A Qualitative Study.

Caregivers (ie, family and friends) are essential in providing care and support for patients undergoing hematopoietic cell transplantation (HCT) and throughout their recovery. Traditionally delivered in the hospital, HCT is being increasingly provided in the outpatient setting, potentially heightening the burden on caregivers. Extensive work has examined the inpatient HCT caregiving experience, yet little is known about how caregiver experiences may differ based on whether the HCT was delivered on an inpatient or outpatient basis, particularly during the acute recovery period post-HCT. This study explored the similarities and differences in caregiver experiences in the inpatient and outpatient settings during the early recovery from reduced-intensity conditioning (RIC) allogeneic HCT. We conducted semistructured interviews (n = 15) with caregivers of adults undergoing RIC allogeneic HCT as either an inpatient (n = 7) or an outpatient (n = 8). We recruited caregivers using purposeful criterion sampling, based on the HCT setting, until thematic saturation occurred. Interview recordings were transcribed and coded through thematic analysis using Dedoose v.9.0. The study analysis was guided by the transactional model of stress and coping and the model of adaptation of family caregivers during the acute phase of BMT. Three themes emerged to describe similar experiences for HCT caregivers regardless of setting: (1) caregivers reported feeling like they were a necessary yet invisible part of the care team; (2) caregivers described learning to adapt to changing situations and varying patient needs; and (3) caregivers recounted how the uncertainty following HCT felt like existing between life and death while also maintaining a sense of gratitude and hope for the future. Caregivers also reported distinct experiences based on the transplantation setting and 4 themes emerged: (1) disrupted routines: inpatient caregivers reported disrupted routines when caring for the HCT recipient while simultaneously trying to manage non-caregiving responsibilities at home and work, and outpatient caregivers reported having to establish new routines that included frequent clinic visits with the patient while altering or pausing home and work responsibilities; (2) timing of caregiver involvement: inpatient caregivers felt more involved in care after the patient was discharged from the HCT hospitalization, whereas outpatient caregivers were already providing the majority of care earlier in the post-transplantation period; (3) fear of missing vital information: inpatient caregivers worried about missing vital information about the patient's care and progress if not physically present in the hospital, whereas outpatient caregivers feared overlooking vital information that may warrant contacting the care team as they monitored the patient at home; and (4) perceived adequacy of resources to meet psychosocial and practical needs: inpatient caregivers reported having adequate access to resources (ie, hospital-based services), whereas outpatient caregivers felt they had more limited access and needed to be resourceful in seeking out assistance. Inpatient and outpatient HCT caregivers described both similar and distinct experiences during the acute recovery period post-HCT. Specific interventions should address caregiver psychosocial needs (ie, distress, illness uncertainty, communication, and coping) and practical needs (ie, community resource referral, preparedness for home-based caregiving, and transplantation education) of HCT caregivers based on setting.

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.