"When I do have some time, rather than spend it polishing silver, I want to spend it with my grandkids": a qualitative exploration of patient values following left ventricular assist device implantation.

BACKGROUND: Values are broadly understood to have implications for how individuals make decisions and cope with serious illness stressors, yet it remains uncertain how patients and their family and friend caregivers discuss, reflect upon, and act on their values in the post-left ventricular assist device (LVAD) implantation context. This study aimed to explore the values elicitation experiences of patients with an LVAD in the post-implantation period. METHODS: Qualitative descriptive study of LVAD recipients. Socio-demographics and patient resource use were analyzed using descriptive statistics and semi-structured interview data using thematic analysis. Adult (> 18 years) patients with an LVAD receiving care at an outpatient clinic in the Southeastern United States. RESULTS: Interviewed patients (n = 27) were 30-76 years, 59% male, 67% non-Hispanic Black, 70% married/living with a partner, and 70% urban-dwelling. Three broad themes of patient values elicitation experiences emerged: 1) LVAD implantation prompts deep reflection about life and what is important, 2) patient values are communicated in various circumstances to convey personal goals and priorities to caregivers and clinicians, and 3) patients leverage their values for strength and guidance in navigating life post-LVAD implantation. LVAD implantation was an impactful experience often leading to reevaluation of patients' values; these values became instrumental to making health decisions and coping with stressors during the post-LVAD implantation period. Patient values arose within broad, informal exchanges and focused, decision-making conversations with their caregiver and the healthcare team. CONCLUSIONS: Clinicians should consider assessing the values of patients post-implantation to facilitate shared understanding of their goals/priorities and identify potential changes in their coping.

"Things That You Thought Mattered, None of That Matters": A Qualitative Exploration of Family Caregiver Values following Left Ventricular Assist Device Implantation.

BACKGROUND: Intentional exploration, or elicitation, of patient and family values-who/what matters most-is critical to the delivery of person-centered care, yet the values elicitation experiences of family caregivers have been understudied. Understanding caregiver experiences discussing, reflecting upon, and acting on their values is critical to optimizing health decisions after left ventricular assist device (LVAD) implantation. OBJECTIVE: The aim of this study was to explore the values elicitation experiences of family caregivers of individuals with an LVAD in the postimplantation period. METHODS: This was a qualitative descriptive study of LVAD caregivers recruited from an outpatient clinic in the southeast United States. After completing one-on-one semistructured interviews, participants' transcripts were analyzed using thematic analysis. RESULTS: Interviewed caregivers (n = 21) were 27 to 76 years old, with 67% African American, 76% female, 76% urban-dwelling, and 62% a spouse/partner. LVAD implantation was an impactful experience prompting caregiver reevaluation of their values; these values became instrumental to navigating decisions and managing stressors from their caregiving role. Three broad themes of caregiver values elicitation experiences emerged: (1) caregivers leverage their values for strength and guidance in navigating their caregiving role, (2) LVAD implantation prompts (re)evaluation of relationships and priorities, and (3) caregivers convey their goals and priorities when deemed relevant to patient care. CONCLUSIONS: Having a care recipient undergo LVAD implantation prompted caregivers to reevaluate their values, which were used to navigate caregiving decisions and stressors. Findings highlight the need for healthcare professionals to engage and support caregivers after LVAD implantation.

Social Support Networks Among Black Caregivers of Persons With Memory Problems.

Positive social support can predict health outcomes in populations that experience significant burdens, such as minority caregivers. The purpose of the current study was to detail the social network (SN) of 36 Black family caregivers (FCGs) for persons with memory problems (PWMP) and examine differences in SN support depending on FCG gender and relationship to the care recipient. Participants were recruited from the Alzheimer's family program at the University of Alabama at Birmingham and the local community. FCGs were categorized into adult children (ACH), grandchildren and in-law children, and friends and other relatives. FCGs described the amount of adequate support they receive for different types of support from their SN. Female FCGs reported higher levels of support overall, with the largest effect sizes including social (d = 0.63), emotional (d = 0.64), and financial (d = 0.38) support. The largest effect size comparison of caregiver relationship type was in social support, with the ACH group reporting the lowest levels of adequate social support compared to the other two groups (d = 0.48). Findings suggest that different types of Black FCGs face unique challenges depending on their gender and familial relationship to the care recipient. [Journal of Gerontological Nursing, 50(1), 22-29.].

A lay navigator-led, early palliative care intervention for African American and rural family caregivers of individuals with advanced cancer (Project Cornerstone): Results of a pilot randomized trial.

BACKGROUND: The objective of this study was to assess the feasibility, acceptability, and potential efficacy of ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone-a lay navigator-led, early palliative care telehealth intervention for African American/Black and/or rural-dwelling family caregivers of individuals with advanced cancer (ClinicalTrials.gov identifier NCT03464188). METHODS: This was a pilot randomized trial (November 2019 to March 2021). Family caregivers of patients with newly diagnosed, stage III/IV, solid-tumor cancers were randomized to receive either an intervention or usual care. Intervention caregivers were paired with a specially trained lay navigator who delivered 6 weekly, 20-minute to 60-minute telehealth coaching sessions plus monthly follow-up for 24 weeks, reviewing skills in stress management, self-care, getting help, staying organized, and future planning. Feasibility was assessed according to the completion of sessions and questionnaires (predefined as a completion rate ≥80%). Acceptability was determined through intervention participants' ratings of their likelihood of recommending the intervention. Measures of caregiver distress and quality of life were collected at 8 and 24 weeks. RESULTS: Sixty-three family caregivers were randomized (usual care, n = 32; intervention, n = 31). Caregivers completed 65% of intervention sessions and 87% of questionnaires. Average ratings for recommending the program were 9.4, from 1 (not at all likely) to 10 (extremely likely). Over 24 weeks, the mean ± SE Hospital Anxiety and Depression Scale score improved by 0.30 ± 1.44 points in the intervention group and worsened by 1.99 ± 1.39 points in the usual care group (difference, -2.29; Cohen d, -0.32). The mean between-group difference scores in caregiver quality of life was -1.56 (usual care - intervention; d, -0.07). Similar outcome results were observed for patient participants. CONCLUSIONS: The authors piloted ENABLE Cornerstone, an intervention for African American and rural-dwelling advanced cancer family caregivers. The acceptability of the intervention and data collection rates were high, and the preliminary efficacy for caregiver distress was promising. LAY SUMMARY: To date, very few programs have been developed to support under-resourced cancer family caregivers. To address this need, the authors successfully pilot tested an early palliative care program, called Educate, Nurture, Advise, Before Life Ends (ENABLE) Cornerstone, for African American and rural family caregivers of individuals with advanced cancer. Cornerstone is led by specially trained lay people and involves a series of weekly phone sessions focused on coaching caregivers to manage stress and provide effective support to patients with cancer. The authors are now testing Cornerstone in a larger trial. If the program demonstrates benefit, it may yield a model of caregiver support that could be widely implemented.

Stressors and Acceptability of Services Among Black Caregivers of Persons With Memory Problems.

The purpose of the current study was to identify stressors of Black family caregivers (FCGs) of persons with memory problems (PWMPs), services of interest, and barriers to use of these services. Black FCGs were recruited from the Alzheimer's family program at the University of Alabama at Birmingham and affiliated geriatric clinics, media sources, and word-of-mouth referrals. Of 38 Black FCGs interviewed, 26 (68%) were female, 18 (47%) were employed, and 21 (55%) were adult children. Average age of FCGs was 52.11 years. Mean scores for the AD8 Dementia Screening Scale (mean = 13.95, SD = 2.17) and Clinical Dementia Scale Sum of Boxes (mean = 7.29, SD = 0.87) were higher than clinical cutoffs. The most common stressors for Black FCGs were PWMPs' inability to remember who they were, managing care recipients' financial affairs, and managing PWMPs' comorbid conditions. FCGs were most interested in educational material regarding treatment and diagnosis (55.3%), caring for people with dementia (52.6%), understanding dementia (52.6%), and financial/legal services (52.6%). FCGs stated that transportation difficulties and the need for a relief person were barriers to use of services. Results suggest that Black FCGs may be more likely to participate in interventions that include virtual conferencing modalities. [Journal of Gerontological Nursing, 48(6), 13-18.].

Resilience, preparedness, and distress among family caregivers of patients with advanced cancer.

OBJECTIVE: Resilience has been proposed as a primary factor in how many family caregivers of patients with advanced cancer are able to resist psychological strain and perform effectively in the role while bearing a high load of caregiving tasks. To evaluate this hypothesis, we examined whether self-perceived resilience is associated with distress (anxiety and depressive symptoms), caregiver preparedness, and readiness for surrogate decision-making among a racially diverse sample of family caregivers of patients with newly diagnosed advanced cancer. METHODS: Secondary analysis of baseline data from two small-scale, pilot clinical trials that both recruited family caregivers of patients with newly diagnosed advanced cancer. Using multivariable linear regression, we analyzed relationships of resilience as a predictor of mood, caregiving preparedness, and readiness for surrogate decision-making, controlling for sociodemographics. RESULTS: Caregiver participants (N = 112) were mean 56 years of age and mostly female (76%), the patient's spouse/partner (52%), and White (56%) or African-American/Black (43%). After controlling for demographics, standardized results indicated that higher resilience was relevantly associated with higher caregiver preparedness (beta = .46, p < .001), higher readiness for surrogate decision-making (beta = .20, p < .05) and lower anxiety (beta = - .19, p < .05), and depressive symptoms (beta = - .20, p < .05). CONCLUSIONS: These results suggest that resilience may be critical to caregivers' abilities to manage stress, be effective sources of support to patients, and feel ready to make future medical decisions on behalf of patients. Future work should explore and clinicians should consider whether resilience can be enhanced in cancer caregivers to optimize their well-being and ability to perform in the caregiving and surrogate decision-making roles.

Recruitment of hard to contact, hard to engage child populations in clinics and schools.

Recruiting children with chronic disease or subgroups of children (low income, obese, specific ages, types of cancer) from clinics and schools for research studies may be particularly difficult. While some have deemed such groups as hard to reach, these groups may be more accurately described as either hard to contact or hard to engage. This is not because children are unknown to the school or clinic but because the researcher's ability to communicate directly with targeted children prior to enrollment is limited. The purpose of this paper is to describe barriers and possible strategies for recruiting hard to contact or hard to engage subgroups of children. Barriers identified in recruiting these children were: naïve to research, communication style and technology, parent/guardian burden, parental conditions and concerns, child stressors and distractions, and research setting. Possible strategies include: pre-consent education, information sheets about study, identifying preferred method of communication, meaningful and appropriate incentives, coordinating recruitment visit with regularly scheduled clinic appointments or school schedule, demonstrating research equipment, informing staff about research study, negotiating creatively for space for research, and emphasizing confidentiality of data. Consideration of barriers to recruitment and utilization of strategies to counteract these barriers is critical to the success of a study involving subgroups of children.

Mind-Body Interventions for Individuals With Heart Failure: A Systematic Review of Randomized Trials.

BACKGROUND: The effects of mind-body interventions (MBIs) (eg, Tai Chi, yoga, meditation) for individuals with heart failure (HF) have not been systematically evaluated. METHODS AND RESULTS: We performed a systematic review of randomized controlled trials (RCTs) examining the effects of MBIs in HF. We extracted participant characteristics, MBI procedure, outcomes assessed, and main results of English-language RCTs before October 2016. We identified 24 RCTs (n = 1314 participants) of 9 MBI types: Tai Chi (n = 7), yoga (n = 4), relaxation (n = 4), meditation (n = 2), acupuncture (n = 2), biofeedback (n = 2), stress management (n = 1), Pilates (n = 1), and reflexology (n = 1). Most (n = 22, 95.8%) reported small-to-moderate improvements in quality of life (14/14 studies), exercise capacity (8/9 studies), depression (5/5 studies), anxiety and fatigue (4/4 studies), blood pressure (3/5 studies), heart rate (5/6 studies), heart rate variability (7/9 studies), and B-type natriuretic peptide (3/4 studies). Studies ranged from 4 minutes to 26 weeks and group sizes ranged from 8 to 65 patients per study arm. CONCLUSIONS: Although wide variability exists in the types and delivery, RCTs of MBIs have demonstrated small-to-moderate positive effects on HF patients' objective and subjective outcomes. Future research should examine the mechanisms by which different MBIs exert their effects.

Incongruence between women's survey- and interview-determined decision control preferences: A mixed methods study of decision-making in metastatic breast cancer.

OBJECTIVE: Women with metastatic breast cancer face numerous, complex treatment and advance care planning (ACP) decisions. Our aim was to develop a better understanding of women with metastatic breast cancer's decision-making preferences overtime and relative to specific types of decisions. METHODS: Convergent, parallel mixed-methods study. Participants completed the Control Preferences Scale (CPS) and a semi-structured interview of decision-making experiences at enrollment (T1; n = 22) and when facing a decision or 3 months later (T2; n = 19). We categorized women's decision-making experience descriptions into one of the CPS decisional styles and compared them to their CPS response. We constructed an analytic grid that aligned the interview-determined treatment and ACP decisional preferences with the CPS categories at T1 and T2 and calculated Cohen's kappa coefficient and congruence percentages. RESULTS: Participants (n = 22) were White (100%), averaged 62 years, married (54%), retired (45%), and had a bachelor's degree (45%). Congruence between CPS response and interview-determined treatment preferences at T1 was 32% (kappa = 0.083) and 33% (kappa = 0.120) at T2. Congruence between CPS survey response and interview-determined ACP preferences at T1 was 22.7% (kappa =0.092) at T1 and 11% (kappa = 0.011) at T2. CONCLUSIONS: Although women selected a "shared" treatment decision-making style using the CPS validated tool, when interviewed their descriptions generally reflected a passive process in which they followed the oncologists' treatment suggestions. Future research should explore whether the incongruence between stated and actual decision-making style is a function of misinterpreting the CPS choices or a true inconsistency that could lead to adverse consequences such as decisional regret.

Caregiver Burden, Care Recipient Depressive Symptomology, and Social Exchange: Does Race Matter?

Informal caregivers play a vital role in supporting seriously ill patients. However, informal caregiving is burdensome and can lead to negative health outcomes for the caregiver and the care recipient. The study's aim was to evaluate relationships among caregiver burden, care recipient depressive symptomology, and race. Guided by the social exchange perspective, we examined cross-sectional dyadic data from the National Long-Term Care Survey (N = 1279). Using ordinal logistic regression, we found that higher caregiver-reported objective burden was associated with higher care recipient depressive symptoms ( P < .05), an association that was stronger for blacks. Interestingly, despite significant levels of objective burden, there was an association between lower depressive symptoms in black care recipients when there was an exchange of the social good "helpful company" with a caregiver. These findings illustrate the importance of supporting reciprocal exchange as a promising component of maintaining balanced caregiver-care recipient relationships among black older adults and their informal caregivers.

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review.

Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms "heart failure" AND "caregiver." Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5700 caregivers. Research on this population indicates that (1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); (2) caregivers have numerous unmet needs that fluctuate with patients' unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and (3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to progress the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.

The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness.

PURPOSE: Little is known about the impact of family caregiving for adults with poor prognosis cancer on caregivers' own individual self-care practices. We explored differences in caregivers' discrete self-care practices associated with varying levels of caregiver well-being, preparedness, and decision-making self-efficacy. METHODS: Cross-sectional survey within eight community-based southeastern U.S. cancer centers was conducted. Family caregivers of Medicare beneficiaries ≥65 years with pancreatic, lung, brain, ovarian, head and neck, hematologic, or stage IV cancer completed measures of individual self-care practices (health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management, and sleep), well-being (anxiety, depression, and health-related quality of life [HRQoL]), preparedness, and decision-making self-efficacy. RESULTS: Caregivers (n = 294) averaged 66 years, were mostly female (72.8%), white (91.2%), Protestant (76.2%), retired (54.4%), and patients' spouse/partner (60.2%). Approximately, half were rural-dwellers (46.9%) with incomes <$50,000 (53.8%). Most provided support 6-7 days/week (71%) for >1 year (68%). Nearly a quarter (23%) reported high depression and 34% reported borderline or high anxiety. Low engagement in all self-care practices was associated with worse caregiver anxiety, depression, and mental HRQoL (all p values < .05). Caregivers with lower health responsibility, spiritual growth, interpersonal relation, and stress management scores had lower preparedness and decision-making self-efficacy. CONCLUSIONS: A significant proportion of caregivers simultaneously report low engagement in all forms of self-care practices, high depression and anxiety, and low HRQoL mental health scores. Caregiver well-being, preparedness, and decision-making self-efficacy might be optimized through interventions targeted at enhancing health responsibility, stress management, interpersonal relationships, and spiritual growth self-care practices.

Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial.

BACKGROUND: Early palliative care (EPC) is recommended but rarely integrated with advanced heart failure (HF) care. We engaged patients and family caregivers to study the feasibility and site differences in a two-site EPC trial, ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers). METHODS: We conducted an EPC feasibility study (4/1/14-8/31/15) for patients with NYHA Class III/IV HF and their caregivers in academic medical centers in the northeast and southeast U.S. The EPC intervention comprised: 1) an in-person outpatient palliative care consultation; and 2) telephonic nurse coach sessions and monthly calls. We collected patient- and caregiver-reported outcomes of quality of life (QOL), symptom, health, anxiety, and depression at baseline, 12- and 24-weeks. We used linear mixed-models to assess baseline to week 24 longitudinal changes. RESULTS: We enrolled 61 patients and 48 caregivers; between-site demographic differences included age, race, religion, marital, and work status. Most patients (69%) and caregivers (79%) completed all intervention sessions; however, we noted large between-site differences in measurement completion (38% southeast vs. 72% northeast). Patients experienced moderate effect size improvements in QOL, symptoms, physical, and mental health; caregivers experienced moderate effect size improvements in QOL, depression, mental health, and burden. Small-to-moderate effect size improvements were noted in patients' hospital and ICU days and emergency visits. CONCLUSIONS: Between-site demographic, attrition, and participant-reported outcomes highlight the importance of intervention pilot-testing in culturally diverse populations. Observations from this pilot feasibility trial allowed us to refine the methodology of an in-progress, full-scale randomized clinical efficacy trial. TRIAL REGISTRATION: Clinicaltrials.gov NCT03177447 (retrospectively registered, June 2017).

The effects of caregiver emotional stress on the depressive symptomatology of the care recipient.

OBJECTIVES: Depression is a leading mental health issue affecting elderly individuals worldwide. Previous research widely neglects caregiver emotional stress as a probable contributing factor of depression in the elderly. This study investigated caregiver emotional stress as a chronic life stressor of an elderly care recipient using the life stress paradigm as the theoretical foundation. METHODS: The relationships between caregiver emotional stress and care receiver depressive symptoms, as well as other social and psychological mediation factors, were investigated using the 2004 wave of the National Long-Term Care Study (NLTCS). The NLTCS is a nationally representative longitudinal study used to identify frail and disabled elderly Medicare recipients living in the United States. The analytic sample of this study included 1340 caregiver-care receiver dyads who were asked a series of questions concerning their mental health (i.e. emotional stress and depressive symptoms), as well as the availability of social and psychological resources. RESULTS: Overall, the results showed that high levels of emotional stress reported by the caregiver were associated with a higher likelihood of the disabled care receiver reporting depressive symptoms. CONCLUSION: The findings of this investigation point to the importance of studying caregivers and care receivers as dyads as the stress associated with the caregiving role affects each member.

Telephone-Based Rehabilitation Intervention to Optimize Activity Participation After Breast Cancer: A Randomized Clinical Trial.

Importance: Following treatment, breast cancer survivors face challenges participating in valued activities. Objective: To determine whether a telephone-based coaching rehabilitation intervention enhances activity participation in the year following breast cancer treatment. Design, Setting, and Participants: In this multisite, single-blind randomized clinical trial (Optimizing Functional Recovery of Breast Cancer Survivors), recruitment occurred between August 28, 2019, and April 30, 2022. Data collection was completed by April 1, 2023. Participants were recruited from 2 cancer centers (Dartmouth College and the University of Alabama at Birmingham) and via social media advertisements. Women aged 18 years or older who had completed primary treatment for stage I to III breast cancer within 1 year and reported participation restrictions were eligible to participate. Randomization was stratified by site, treatment, and time since treatment. Interventions: The intervention, delivered via telephone over 9 sessions, used behavioral activation and problem-solving principles to promote activity participation. The education-based attention control condition was delivered via telephone at matched intervals. Main Outcomes and Measures: The primary outcome was participation, assessed using 5 measures, including Patient-Reported Outcomes Measurement Information System (PROMIS) social participation-satisfaction measure. One individualized outcome allowed participants to specify activities for which they wanted to foster recovery. Outcomes were collected by telephone by blinded coordinators at baseline and at 8, 20, and 44 weeks. The individualized outcome was assessed at the first and last intervention and control session. Results: Among 1996 patients identified, 303 were eligible and enrolled. Of these, 284 women (94%; mean [SD] age, 56.1 [10.2] years) completed baseline assessments and were randomized, and 81% or more of each group completed the final assessment with no adverse events. Of those who completed the final assessment, 118 of 114 (82%) were in the intervention group, and 113 of 140 (81%) were attention control participants. Between-group differences were not statistically significant for the main measures of PROMIS satisfaction (week 20: Cohen d, 0.1 [95% CI, -0.09 to 0.29] and week 44: Cohen d, -0.08 [95% CI, -0.27 to 0.11]) and ability (week 20: Cohen d, 0.15 [95% CI, -0.06 to 0.37] and week 44: Cohen d, -0.08 [95% CI, -0.27 to 0.11]). On the individualized outcome, intervention participants reported significantly greater improvements in activity satisfaction (Cohen d, 0.76 [95% CI, 0.48-1.02]) and performance (Cohen d, 0.60 [95% CI, 0.32-0.87]). Conclusions and Relevance: In this randomized clinical trial, the intervention catalyzed greater improvements in self-selected activity participation and goal disengagement but did not otherwise accelerate recovery compared with the control condition. Future research should determine what intervention features may lead to the greatest reductions in participation restrictions and other measures that may detect functional recovery. Trial Registration: ClinicalTrials.gov Identifier: NCT03915548.

"It's Not Just the Seizures": Brain Tumor Caregivers' Experiences and Educational Needs in Out-of-Hospital Seizure Management.

Objective: Family caregivers (FCGs) of persons with primary brain tumors (PBTs) report high levels of distress related to concerns about out-of-hospital seizures. This study aims to explore their experiences and needs with seizure management. Methods: Semi-structured interviews were held with 15 FCGs of persons with PBTs, both those who have and those who have not experienced a seizure, to elicit their concerns about out-of-hospital seizure management and related information needs. A qualitative descriptive study using thematic analysis was conducted based on interview data. Results: Three primary themes were identified relative to FCG experiences and needs related to care of PBTs patients, especially seizure management: (1) FCGs' experiences with caring for persons with PBTs; (2) FCGs' educational needs for seizure preparation and resources; and (3) FCGs' desired type of educational resources and information about seizures. Often FCGs were reported being fearful of seizures and nearly all expressed difficulty knowing when to call emergency services. FCGs equally desired written and online resources, and most preferred graphics or videos detailing seizures. Most FCGs thought that seizure-related training should come after rather than at the time of PBTs diagnosis. FCGs of patients who have not experienced seizures were significantly less prepared to manage seizures than those with a prior seizure. Conclusions: Recognizing and managing out-of-hospital seizures can be a difficult and distressing task for FCGs of patients with PBTs and seizure-related resources are needed. Our results suggest that FCGs of care recipients with PBTs need early supportive interventions to provide self-care strategies and problem-solving skills to manage their roles as caregivers. Interventions should include educational components to assist them in understanding the best mechanisms to maintain a safe environment for their care recipients, and those that deepen knowledge about when to contact EMS.

Patterns of Pediatric Palliative and End-of-Life Care in Neonatal Intensive Care Patients in the Southern U.S.

CONTEXT: Despite high rates of mortality among infants in the Southern U.S., little is known about the timing of pediatric palliative care (PPC), the intensity of end-of-life care, and whether there are differences among sociodemographic characteristics. OBJECTIVES: To describe PPC patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. METHODS: Medical record abstraction of infant decedents who received PPC consultation in two NICUs (in Alabama and Mississippi) from 2009 to 2017 (n = 195) including clinical characteristics, palliative and end-of-life care characteristics, patterns of PPC, and intensive medical treatments in the last 48 hours of life. RESULTS: The sample was racially (48.2% Black) and geographically (35.4% rural) diverse. Most infants died after withdrawal of life-sustaining interventions (58%) and had do not attempt resuscitation orders documented (75.9%); very few infants enrolled in hospice (6.2%). Initial PPC consult occurred a median of 13 days after admission and a median of 17 days before death. Infants with a primary diagnosis of genetic or congenital anomaly received earlier PPC consultation (P = 0.02) compared to other diagnoses. In the last 48 hours of life, NICU patients received intensive interventions including mechanical ventilation (81.5%), CPR (27.7%) and surgeries or invasive procedures (25.1%). Black infants were more likely to receive CPR compared to White infants (P = 0.04). CONCLUSION: Overall, PPC consultation occurred late in NICU hospitalizations, infants received high-intensity medical interventions in the last 48 hours of life, and there are disparities in intensity of treatment interventions at end of life. Further research is needed to explore if these patterns of care reflect parent preferences and goal concordance.

Bias reported by family caregivers in support received when assisting patients with cancer-related decision-making.

BACKGROUND: Family caregivers play an increasing role in cancer treatment decision-making. We examined bias reported by family caregivers in the support they and their patient received from their healthcare team when making these decisions, including associations with distress. METHODS: Analysis of 2021 national survey data of family caregivers of patients with cancer (N = 2703). Bias experienced in decision support was assessed with the item: "Have you felt that the support you and the person with cancer have received for making cancer-related decisions by your doctor or healthcare team has been negatively affected by any of the following?" Check-all-that-apply response options included: age, race, language, education, political affiliation, body weight, insurance type or lack of insurance, income, religion, sexual orientation, and gender/sex. Chi-square and regression analyses assessed associations between bias and caregiver distress (GAD-2, PHQ-2). RESULTS: Of 2703 caregiver respondents, 47.4% (n = 1281) reported experiencing ≥1 bias(es) when receiving decision support for making cancer-related decisions. Bias was more prevalent among younger caregivers, males, transwomen/men or gender non-conforming caregivers, racial/ethnic minorities, and those providing care over a longer time period. The odds of having high anxiety (GAD-2 scores ≥ 3) were 2.1 times higher for caregivers experiencing one type of bias (adjusted OR, 2.1; 95% CI, 1.6-2.8) and 4.2 times higher for caregivers experiencing ≥2 biases (adjusted OR, 4.2; 95% CI, 3.4-5.3) compared to none. Similar results were found for high depression scores (PHQ-2 scores ≥ 3). CONCLUSIONS: Nearly half of caregivers involved in their care recipients' cancer-related decisions report bias in decision support received from the healthcare team. Experiencing bias was strongly associated with high psychological distress.

How Values Are Discussed, Reflected Upon, and Acted On by Patients and Family Caregivers in the Context of Heart Failure: A Scoping Review.

PURPOSE: Values are critical to how individuals make decisions and cope, yet the values of heart failure (HF) patients and their family caregivers (FCGs) remain understudied. We sought to report the state of the science on how values are discussed, reflected upon, and acted on by patients with HF, their FCGs, or both related to health-related decision making and coping. METHOD: A scoping review was conducted of empirical studies using the following keywords: "heart failure," "values," "decision-making," and "coping." PubMed, PsycINFO, and Scopus were searched from inception to June 2022 in English. Included articles reported values as a key finding (outcome/theme) in their abstract. RESULTS: Of 448 articles screened for eligibility, 16 met the inclusion criteria. Twelve articles reported findings addressing patient values, 3 addressed patient and FCG values, and 1 addressed FCG values. Values were reported to influence patient self-care behaviors and left ventricular assist device (LVAD) implantation decisions, although their prioritization varied across time and contexts. When prioritized values conflicted with recommended self-care activities, some patients modified their approach to achieving the value. Others modified or abandoned tasks in favor of the value and accompanying goals. Low motivation and alignment between unhealthy behaviors and values often led to nonadherent decisions. Five of 8 articles focusing on cardiac devices reported patient survival as the most prioritized value during implantation decisions. FCG values were rarely reported or evaluated separately from patient values. Patients leveraged several coping strategies, although the processes through which values affected coping was not described. CONCLUSIONS: Prioritized values influenced HF-related decisions, including self-care and LVAD implantation. While several articles reported on coping and values, none described processes through which values affect coping, which highlights a research gap. HIGHLIGHTS: Family caregiver values were rarely reported or evaluated separately from patient values, highlighting a gap in the literature.

What Is Most Important to Family Caregivers When Helping Patients Make Treatment-Related Decisions: Findings from a National Survey.

Prioritizing patient values-who/what matters most-is central to palliative care and critical to treatment decision making. Yet which factors are most important to family caregivers in these decisions remains understudied. Using data from a U.S. national survey of cancer caregivers (N = 1661), we examined differences in factors considered very important by caregivers when partnering with patients in cancer treatment decision making by cancer stage and caregiver sociodemographics. Fifteen factors were rated on a 4-point Likert-scale from 'very unimportant' to 'very important.' Descriptive statistics were used to characterize caregiver factors and tabulate proportions of importance for each. Generalized linear mixed effect modeling was used to examine the importance of factors by cancer stage, and chi-square analyses were performed to determine associations between caregiver sociodemographics and the five most commonly endorsed factors: quality of life (69%), physical well-being (68%), length of life (66%), emotional well-being (63%), and opinions/feelings of oncology team (59%). Significant associations (all p's < 0.05) of small magnitude were found between the most endorsed factors and caregiver age, race, gender, and ethnicity, most especially 'opinions/feelings of the oncology team'. Future work is needed to determine the best timing and approach for eliciting and effectively incorporating caregiver values and preferences into shared treatment decision making.