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Competing Interests: The authors have disclosed that they do not have any potential conflicts of interest.

Objectives: To quantify the frequency and patterns of clinicians' use of choice frames when discussing preference-sensitive care with surrogate decision-makers in the ICU., Design: Secondary sequential content analysis., Setting: One hundred one audio-recorded and transcribed conferences between surrogates and clinicians of incapacitated, critically ill adults from a prospective, multicenter cohort study., Subjects: Surrogate decision-makers and clinicians., Interventions: None., Measurements and Main Results: Four coders identified preference-sensitive decision episodes addressed in the meetings, including topics such as mechanical ventilation, renal replacement, and overall goals of care. Prior critical care literature provided specific topics identified as preference-sensitive specific to the critical care context. Coders then examined each decision episode for the types of choice frames used by clinicians. The choice frames were selected a priori based on decision science literature. In total, there were 202 decision episodes across the 101 transcripts, with 20.3% of the decision episodes discussing mechanical ventilation, 19.3% overall goals of care, 14.4% renal replacement therapy, 14.4% post-discharge care (i.e., discharge location such as a skilled nursing facility), and the remaining 32.1% other topics. Clinicians used default framing, in which an option is presented that will be carried out if another option is not actively chosen, more frequently than any other choice frame (127 or 62.9% of decision episodes). Clinicians presented a polar interrogative, or a "yes or no question" to accept or reject a specific care choice, in 43 (21.3%) decision episodes. Clinicians more frequently presented options emphasizing both potential losses and gains rather than either in isolation., Conclusions: Clinicians frequently use default framing and polar questions when discussing preference-sensitive choices with surrogate decision-makers, which are known to be powerful nudges. Future work should focus on designing interventions promoting the informed use of these and the other most common choice frames used by practicing clinicians., Competing Interests: Dr. Hart’s institution received funding from the National Institutes of Health (NIH); she received funding from the University of Pennsylvania, the U.S. Federal Government—Veterans Administration Medical Center, and St. Luke’s Bethlehem. Drs. Hart, Steingrub, and White received support for article research from the NIH. Dr. Summer received funding from the University of Pennsylvania, Penn Medicine, Project HOME, and Boston Healthcare for the Homeless. Dr. Ogunduyile disclosed government work. Dr. Lo received funding from Takeda Pharmaceuticals, Wolters Kluwer, Blue Cross Blue Shield, and Ropes and Gray; he disclosed that he is a member of the External Advisory Committee for Vivli. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2024 by the Society of Critical Care Medicine and Wolters Kluwer Health, Inc. All Rights Reserved.)

Abstract: Lack of information is cited as a source of distress for caregivers of patients with brain injury during the recovery process. This is a quality improvement project with the purpose of educating family members of brain injury patients about acute inpatient rehabilitation and providing a reliable source of information through the Model Systems Knowledge Translation Center Traumatic Brain Injury Model Systems Factsheets. The study was conducted in the brain injury unit of an acute inpatient rehabilitation facility and a total of 32 family members participated in the study. Educational sessions were provided verbally by phone based on the Model Systems Knowledge Translation Center-Traumatic Brain Injury Model Systems "Traumatic Brain Injury and Acute Inpatient Rehabilitation" Factsheet. Surveys with five confidence statements and Likert scale-graded responses were verbally administered by phone immediately before and after each educational session to evaluate for understanding. There was a statistically significant increase in confidence for all five confidence statements when comparing pre- and posteducation responses ( P < 0.05, Wilcoxon signed-rank test). This quality improvement project thereby presents an effective and feasible framework for teaching, improving communication, and providing valuable information to families early in the brain injury rehabilitation course., Competing Interests: Financial disclosure statements have been obtained, and no conflicts of interest have been reported by the authors or by any individuals in control of the content of this article., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Purpose of Review: To highlight the emerging crisis of critically ill elderly patients and review the unique burden of multidimensional morbidity faced by these patients and caregivers and potential interventions., Recent Findings: Physical, psychological, and cognitive sequelae after critical illness are frequent, durable, and robust across the international ICU outcome literature. Elderly patients are more vulnerable to the multisystem sequelae of critical illness and its treatment and the resultant multidimensional morbidity may be profound, chronic, and significantly affect functional independence, transition to the community, and quality of life for patients and families. Recent data reinforce the importance of baseline functional status, health trajectory, and chronic illness as key determinants of long-term functional disability after ICU. These risks are even more pronounced in older patients., Summary: The current article is an overview of the outcomes of older survivors of critical illness, putative interventions to mitigate the long-term morbidity of patients, and the consequences for families and caregivers. A multimodal longitudinal approach designed to follow patients for one or more years may foster a better understanding of multidimensional morbidity faced by vulnerable older patients and families and provides a detailed understanding of recovery trajectories in this unique population to optimize outcome, goals of care directives, and ongoing informed consent to ICU treatment., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Purpose: The aim of this study was to describe nurses' experiences of the prerequisites for implementing family-centered care to prevent pediatric delirium., Design: The research employed a qualitative, descriptive study design., Methods: A total of 10 nurses working in the pediatric intensive care unit at 1 university hospital participated in the study. The quality data were collected using individual semistructured interviews, and the data were then analyzed by inductive content analysis., Results: The prerequisites for implementing family-centered care to prevent delirium among pediatric patients consisted of 30 subcategories that were grouped into 11 generic categories. The generic categories were further grouped into 5 main categories: (1) an environment that supports family presence, (2) psychosocial support for the family, (3) individual family involvement, (4) family participation in shared decision-making, and (5) nurses' professional competence., Conclusions: According to the nurses' experiences, the implementation of a family-centered approach to preventing delirium in pediatric patients requires creating a supportive environment for families, providing psychosocial support, encouraging family involvement in decision-making, and ensuring that all nurses have the necessary skills., Competing Interests: The authors report no conflicts of interest., (Copyright © 2024 The Authors. Published by Wolters Kluwer Health, Inc. All rights reserved.)

Competing Interests: The authors have disclosed that they do not have any potential conflicts of interest.

Family-centered care is an approach to promote the health and well-being of children with chronic diseases and their families. This study aims to explore the knowledge components, structures, and research trends related to family-centered care for children with chronic conditions. We conducted the keyword network analysis in three stages using the keywords provided by the authors of each study: (1) search and screening of relevant studies, (2) keyword extraction and refinement, and (3) data analysis and visualization. The core keywords were child, adolescence, parent, and disabled. Four cohesive subgroups were identified through degree centrality. Research trends in the three phases of a recent decade have been changed. With the systematic understanding of the context of the knowledge structure, the future research and effective strategy establishment are suggested based on family-centered care for children with chronic disease., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Breast cancer is the most common cancer in women, and first-degree relatives (FDRs) of breast cancer patients have a significantly higher risk of developing breast cancer. However, the factors affecting breast cancer screening behavior of FDRs in China remain unclear., Objective: The aim of this study was to determine the social cognitive theory factors influencing screening behaviors of FDRs., Methods: A cross-sectional survey was conducted, and 430 FDRs were recruited. Data were collected using demographic information and self-reported questionnaire based on the social cognitive theory. The structural equation modeling method was used to analyze the influence of social cognitive factors on breast cancer screening behavior., Results: The model showed a good fit (goodness of fit = 0.462). Goal setting and self-regulation (β = 0.631, P < .001) and positive outcome expectation (β = 0.098, P = .042) were positively related to breast cancer screening behavior. Negative outcome expectation was negatively related to breast cancer screening behavior (β = -0.102, P = .024). In addition, positive outcome expectation, negative outcome expectation, and goal setting and self-regulation are mediators of self-efficacy (β = 0.475, P < .001) to breast cancer screening behavior., Conclusion: Goal setting and self-regulation are important influences on breast cancer screening behavior. The social cognitive theory is both applicable to and effective in explaining and predicting breast cancer screening behavior., Implications for Practice: Health professionals can develop appropriate intervention strategies based on the social cognitive theory among FDRs. It is necessary to focus on the people who influence women, such as spouses, mothers, or daughters., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Despite significant family caregiver (FCG) burnout, there are currently no tested interventions to support the FCG role after left ventricular assist device (LVAD) implantation or formalized training for clinicians to support FCGs., Objective: We adapted the existing ENABLE (Educate, Nurture, Advise Before Life Ends) intervention to LVAD clinicians and FCGs and assessed clinical implementation and dissemination., Methods: ENABLE-LVAD is an interactive, self-paced clinician training coupled with FCG-facing guidebooks and resources. Implementation and dissemination were evaluated by the RE-AIM (reach, effectiveness, adoption, implementation, and maintenance) framework., Results: As of May 2023, 187 clinicians registered for the training, and 41 completed all modules (22.0% completion rate). Of those who completed the training and responded to a 6-month survey, one-third (n = 10, 33.3%) used ENABLE-LVAD with FCGs, and 100% of those planned to continue using it. The primary barrier to completing the training was time., Conclusions: The ENABLE-LVAD clinician training was successfully disseminated and implemented as a useful resource to support LVAD FCGs., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Research on whole genome/exome sequencing is increasing worldwide. However, challenges are emerging in relation to receiving germline pathogenic variant results and sharing them with relatives., Objective: The aim of this study was to investigate the occurrence of and reasoning related to regret among patients with cancer who shared single-gene testing results and whole exome sequencing with family members., Methods: This was a single-center, cross-sectional study. The Decision Regret Scale was administered, and descriptive questionnaires were used with 21 patients with cancer., Results: Eight patients were classified as having no regret, 9 patients were classified as having mild regret, and 4 patients were classified as having moderate to strong regret. Reasons patients felt that sharing was the right decision included the following: to allow relatives and children to take preventive measures, the need for both parties to be aware of and ready for the hereditary transmission of cancer, and the need to be able to discuss the situation with others. On the other hand, some patients did not think it was a good decision to share the information because of the associated anxiety., Conclusions: Regret over sharing test results for pathogenic germline variants of hereditary cancers with relatives tended to be low. The main reason was that patients believed that they were able to benefit others by sharing., Implications for Practice: Healthcare professionals need to understand the postsharing perceptions and experiences of patients and support them throughout the sharing process., Competing Interests: K.Y. has received royalties from the ProGRP patent. All other authors have no conflicts of interest to disclose., (Copyright © 2023 The Authors. Published by Wolters Kluwer Health, Inc.)

In the fight against the COVID-19 pandemic, the importance of health literacy in individuals' attitudes has increased. This study aimed to show whether there is a relationship between health literacy and adherence to personal protective anti-COVID-19 health behaviors in health workers and their relatives and to evaluate the barriers to adherence to personal protective anti-COVID-19 health behaviors. Designed as a cross-sectional mixed-methods study. Participants were asked to fill in an online survey form containing questions designed to determine their sociodemographic data, health literacy, adherence to protective anti-COVID-19 health behaviors, and barriers to adherence. The research results were evaluated with a confidence interval of 95% and margin of error of 0.05. Thematic content analysis was used to evaluate participants' answers to the open-ended questions. In this study, data collected from 393 participants were analyzed. In the Disease Prevention and Health Promotion Subscale, the group of participants who adhered to wearing masks "at all times" obtained a higher average score from the Turkey Health Literacy Scale than other participant groups, while the participant group that "always" complied with hand washing and social distancing obtained higher average scores from the Turkey Health Literacy Scale and its two subscales compared to other participant groups. As a result of the thematic content analysis carried out in order to determine the situations that prevent the participants from complying with personal protective anti-COVID-19 health behaviors, the main themes were determined as "forgetting/not wearing the habit of wearing a mask," "mask ergonomics" and "noncompliance with social distance." This study shows that there is a positive relationship between health literacy and adherence to protective anti-COVID-19 health behaviors among health workers and their relatives and revealed major barriers to adherence to protective anti-COVID-19 health behaviors among health workers and their relatives., Competing Interests: The authors have no funding and conflicts of interest to disclose., (Copyright © 2024 the Author(s). Published by Wolters Kluwer Health, Inc.)

Competing Interests: The authors have disclosed that they do not have any potential conflicts of interest.

Objectives: To examine associations between family surrogates' bereavement outcomes and four previously determined quality of dying and death (QODD) latent classes (high, moderate, poor-to-uncertain, and worst)., Design: Prospective, longitudinal, observational study., Setting: Medical ICUs at two academically affiliated medical centers in Taiwan., Patients/participants: Three hundred nine family surrogates responsible for decision-making for critically ill patients at high risk of death (Acute Physiology and Chronic Health Evaluation II scores > 20) from a disease., Interventions: None., Measurements and Main Results: Participants were assessed by the depression and anxiety subscales of the Hospital Anxiety and Depression Scale, the Impact of Event Scale-Revised, 11 items of the Prolonged Grief Disorder (PGD) scale, and the Medical Outcomes Study 36-Item Short-Form Health Survey at 1, 3, 6, 13, 18, and 24 months post-loss. We simultaneously examined associations of four QODD latent classes with physical and mental health-related quality of life (HRQOL) and symptoms of anxiety, depression, post-traumatic stress disorder (PTSD), and PGD assessed over 24 bereavement months using multivariate hierarchical linear modeling. Surrogates' distinct QODD latent classes assessed at 1-month post-loss were significantly associated with bereavement outcomes, except for physical HRQOL and PGD symptoms. Significantly more depressive symptoms and worse mental HRQOL (β [95% CI]) were reported by bereaved surrogates in the moderate (1.958 [1.144-2.772], -2.245 [-3.961 to -0.529]), poor-to-uncertain (2.224 [1.438-3.010], -7.026 [-8.683 to -5.369]), and worst (2.081 [1.215-2.964], -4.268 [-6.096 to -2.440]) QODD classes than those in the high QODD class. Bereaved surrogates in the moderate (2.095 [1.392-2.798]) and poor-to-uncertain (0.801 [0.123-1.480]) QODD classes reported more anxiety symptoms, whereas those in the poor-to-uncertain QODD class suffered more PTSD symptoms (2.889 [1.005-4.774]) than those in the high QODD class., Conclusions: The four distinct QODD latent classes were significantly associated with ICU family surrogates' bereavement outcomes, suggesting targets to improve end-of-life care quality in ICUs., Competing Interests: The authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine and Wolters Kluwer Health, Inc.)

Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this "Pediatric Critical Care Medicine Perspectives" piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: "Supported Privacy." In addition, we offer concrete recommendations to actualize "Supported Privacy" in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of "Supported Privacy" into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU., Competing Interests: The authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2024 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Objectives: Nudging, a behavioral economics concept, subtly influences decision-making without coercion or limiting choice. Despite its frequent use, the specific application of nudging techniques by clinicians in shared decision-making (SDM) is understudied. Our aim was to analyze clinicians' use of nudging in a curated dataset of family care conferences in the PICU., Design: Between 2019 and 2020, we retrospectively studied and coded 70 previously recorded care conference transcripts that involved physicians and families from 2015 to 2019. We focused on decision-making discussions examining instances of nudging, namely salience, framing, options, default, endowment, commission, omission, recommend, expert opinion, certainty, and social norms. Nudging instances were categorized by decision type, including tracheostomy, goals of care, or procedures., Setting: Single-center quaternary pediatric facility with general and cardiac ICUs., Patients: None., Interventions: None., Measurements: We assessed the pattern and frequency of nudges in each transcript., Main Results: Sixty-three of the 70 transcripts contained SDM episodes. These episodes represented a total of 11 decision categories based on the subject matter of nudging instances, with 308 decision episodes across all transcripts (median [interquartile range] 5 [4-6] per conference). Tracheostomy was the most frequently discussed decision. A total of 1096 nudging instances were identified across the conferences, with 8 (6-10) nudge types per conference. The most frequent nudging strategy used was gain frame (203/1096 [18.5%]), followed by loss frame (150/1096 [13.7%])., Conclusions: Nudging is routinely employed by clinicians to guide decision-making, primarily through gain or loss framing. This retrospective analysis aids in understanding nudging in care conferences: it offers insight into potential risks and benefits of these techniques; it highlights ways in which their application has been used by caregivers; and it may be a resource for future trainee curriculum development., Competing Interests: Dr. October is currently a federal employee at the National Institutes for Health (NIH) and received support for article research from the NIH. Dr. Miller-Smith received funding from AAP Grand Rounds and Pediatrics in Review. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2024 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Background: Although family caregivers experienced negative psychological symptoms associated with witnessing intensive care unit delirium in their loved ones, there is a lack of clear understanding of how delirium is associated with family caregiver psychological distress. Uncertainty could be a factor contributed to this association., Objectives: The aim of this study was to examine the relationship between uncertainty and psychological distress among family caregivers of patients with delirium in intensive care units., Methods: A cross-sectional correlational design was used for this observational study of adult family caregivers of patients admitted to the intensive care unit and who reported witnessing delirium symptoms in their loved ones. Family caregivers completed an electronic survey in January 2022 that consisted of a family caregiver and patient demographic form, the Mishel Uncertainty in Illness Scale-Family Member, and the Kessler Psychological Distress Scale. Descriptive, correlational, and regression statistical analyses were applied., Results: One hundred twenty-one adult family caregivers were enrolled. Family caregivers reported substantial uncertainty (mean, 106.15, on a scale of 31-155) and moderate to severe psychological distress (mean, 31.37, on a scale of 10-50) regarding their witnessing of delirium episodes in their loved ones. Uncertainty was significantly correlated with psychological distress among family caregivers (rs = 0.52, P < .001). Uncertainty significantly predicted psychological distress among family caregivers (regression coefficient, 0.27; P < .001)., Discussion: Family caregiver uncertainty was positively associated with psychological distress. This distress can interfere with family caregiver involvement in patient delirium care. These findings are essential to increase critical care nurse awareness and inform the development of nursing interventions to alleviate possible uncertainty and distress., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Objectives: To determine the effect of a standardized program for family participation in essential care activities in the ICU on symptoms of anxiety, depression, posttraumatic stress and satisfaction among relatives, and perceptions and experiences of ICU healthcare providers (HCPs)., Design: Multicenter stepped-wedge cluster randomized controlled trial., Setting: Seven adult ICUs, one university, and six general teaching hospitals., Participants: Three hundred six relatives and 235 ICU HCPs., Interventions: A standardized program to facilitate family participation inpatient communication, amusement/distraction, comfort, personal care, breathing, mobilization, and nutrition., Measurements and Main Results: Data were collected through surveys among relatives and ICU HCPs. There were no significant differences in symptoms of anxiety in relatives in the intervention period compared with the control period (median Hospital Anxiety and Depression Scale [HADS] 5 [interquartile range (IQR) 2-10] vs 6 [IQR 3-9]; median ratio [MR] 0.72; 95% CI, 0.46-1.13; p = 0.15), depression (median HADS 4 [IQR 2-6] vs 3 [IQR 1-6]; MR 0.85; 95% CI, 0.55-1.32; p = 0.47) or posttraumatic stress (median Impact of Event Scale-Revised score 0.45 [IQR 0.27-0.82] vs 0.41 [IQR 0.14-1]; MR 0.94; 95% CI, 0.78-1.14; p = 0.54). Reported satisfaction was slightly lower in the intervention period (mean 8.90 [ sd 1.10] vs mean 9.06 [ sd 1.10], difference -0.60; 95% CI, -1.07 to -0.12; p = 0.01). ICU HCPs perceived that more relatives knew how to participate: 47% in the intervention period versus 22% in the control period (odds ratio [OR] 3.15; 95% CI, 1.64-6.05; p < 0.01). They also reported relatives having sufficient knowledge (41% vs 16%; OR 3.56; 95% CI, 1.75-7.25; p < 0.01) and skills (44% vs 25%; OR 2.38; 95% CI, 1.22-4.63; p = 0.01) to apply family participation., Conclusions: Application of a standardized program to facilitate family participation did not change mental health symptoms in relatives of ICU patients 3 months after discharge. ICU HCPs reported increased clarity, knowledge, and skills among relatives and ICU HCPs., Competing Interests: Prof. Vloet’s institution received funding from the Dutch Research Council (Netherlands Organization for Scientific Research [NWO] Foundation Innovation Alliance, Regional Attention and Action for Knowledge circulation [RAAK SIA] (RAAK.PUB06.017). Dr. Rutten’s, Mrs. Leerentveld’s, Dr. Burgers-Bonthuis’, Dr. Festen-Spanjer’s, Mrs. Klarenbeek’s, Prof. Van Den Boogaard’s, and Dr. Ewalds’ institutions received funding from NWO, RAAK/-SIA. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine and Wolters Kluwer Health, Inc.)

Objectives: Evaluate literature on the dying process in children after withdrawal of life sustaining measures (WLSM) in the PICU. We focused on the physiology of dying, prediction of time to death, impact of time to death, and uncertainty of the dying process on families, healthcare workers, and organ donation., Data Sources: MEDLINE, Embase, Cochrane Central Register of Controlled Trials, PsycINFO, CINAHL, and Web of Science., Study Selection: We included studies that discussed the dying process after WLSM in the PICU, with no date or study type restrictions. We excluded studies focused exclusively on adult or neonatal populations, children outside the PICU, or on organ donation or adult/pediatric studies where pediatric data could not be isolated., Data Extraction: Inductive qualitative content analysis was performed., Data Synthesis: Six thousand two hundred twenty-five studies were screened and 24 included. Results were grouped into four categories: dying process, perspectives of healthcare professionals and family, WLSM and organ donation, and recommendations for future research. Few tools exist to predict time to death after WLSM in children. Most deaths after WLSM occur within 1 hour and during this process, healthcare providers must offer support to families regarding logistics, medications, and expectations. Providers describe the unpredictability of the dying process as emotionally challenging and stressful for family members and staff; however, no reports of families discussing the impact of time to death prediction were found. The unpredictability of death after WLSM makes families less likely to pursue donation. Future research priorities include developing death prediction tools of tools, provider and parental decision-making, and interventions to improve end-of-life care., Conclusions: The dying process in children is poorly understood and understudied. This knowledge gap leaves families in a vulnerable position and the clinical team without the necessary tools to support patients, families, or themselves. Improving time to death prediction after WLSM may improve care provision and enable identification of potential organ donors., Competing Interests: Drs. Francoeur’s and Dhanani’s institutions received funding from the Canadian Blood Services. Dr. Hornby received funding from the Canadian Blood Services. Dr. Scales disclosed that he is an applied scientist with the Ottawa Hospital Research Institute (OHRI) Dynamical Analysis Laboratory, that he is the co-inventor of software tools developed in the laboratory, with licensing by Therapeutic Monitoring Systems, and he is named on a patent owned by the OHRI. Dr. Weiss received funding from Transplant Québec, a nonprofit governmental organ donation organization. Ms. Hornby, Dr. Dhanani, and Dr. Scales are named on a patent related to estimating the time to death employing variability monitoring and physiological waveform analysis. Dr. Dhanani is a Hospital Donation Physician paid by Ontario Health. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Background: Older patients with cancer receive anticancer therapy in outpatient settings, and care-related issues may occur after discharge, which often requires family caregivers (FCs) to play a significant role in providing cancer care at home. However, relatively few studies have been focused on exploring the care experiences of these FCs., Purpose: The aim of this study was to explore the care experiences of FCs caring for older family members with cancer at home., Methods: A qualitative study design and in-depth individual interviews were used to explore the at-home care experiences of FCs of older patients with cancer. The research was conducted in chemotherapy outpatient settings of a medical center in northern Taiwan. Content analysis was used to analyze data. The analyses focused on first extracting meaningful units from the text and then inducting categories from these units and determining the major themes., Results: Twenty FCs were interviewed. The three themes identified included (a) increased information needs and challenges in diet preparation and treatment decision making, (b) personal and patient-induced emotional stress, and (c) life rebalancing through the care experience., Conclusions/implications for Practice: The findings highlight the educational requirements, especially related to meeting personal dietary needs and obtaining psychological support, for FCs caring for older patients with cancer to help them rebalance their life., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2023 The Authors. Published by Wolters Kluwer Health, Inc.)

Background/introduction: Restrictions on visitors during the coronavirus disease 2019 (COVID-19) pandemic had major implications for both patients and families, impacting health care outcomes. Policies included mandatory closures, masking, and visiting restrictions both in acute and long-term care. Despite visiting restrictions in health care systems, little is known about its effects., Objectives/aims: The objective of this study was to elicit perceptions of individuals who were separated from their loved ones during acute care hospitalization during the COVID pandemic., Methods: Individuals who experienced separation from hospitalized family members because of the "no-visitor policies" during the COVID-19 pandemic were asked to participate in a study to elicit their perceptions. After institutional review board approval, interviews were completed for those who had loved ones admitted to acute care facilities only. Audiotaped and transcribed interviews were conducted in person, via telephone, or virtually using a primary investigator-developed interview guide. Using the Colaizzi method of analysis, themes were derived., Results: Of the 11 completed interviews, 100% of participants were female, and all were residents of Texas. Themes derived from this pilot project were advocacy, communication, emotional upheaval, human factors, isolation, and abandonment., Conclusions: Findings from patient interviews support previous published studies. Ideas for improved patient and family experience discussed by the authors include personal protective equipment for significant others, consideration of visitation policies for those patients without decision-making capabilities, and increased accessibility to communication aids for both patients and families., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Family caregivers play crucial roles in the self-management of patients with heart failure (HF). However, little is known about caregiving experiences of Chinese family caregivers during acute HF., Objective: The aim of this study was to describe Chinese family caregivers' experiences in symptom management and care-seeking during acute HF., Methods: This is an exploratory, qualitative study using the Consolidated Criteria for Reporting Qualitative Research guidelines. Data were collected through semistructured interviews and analyzed with thematic analysis., Findings: A total of 21 family caregivers of patients with acute HF were enrolled in this study. "Empowered but isolated" was identified as the overarching theme during data analysis, including 3 themes and 6 subthemes: (1) "Responsible symptom managers: leading the home-based symptom management," including 2 subthemes, "Proxy in symptom management" and "Only knowing the surface, instead of the truth"; (2) "Powerless anchors: care-seeking is a torturous journey," including 2 subthemes, "Facing discrepancies in care-seeking" and "Seeing a doctor is the last choice"; (3) "Carrying the weight forward: responsibility combing with emotional burnout," including 2 subthemes, "Living on tenterhooks" and "Submitting to fate.", Conclusions: In this study, we described Chinese family caregivers' experiences in symptom management and care-seeking during acute HF. Although empowered as proxy, they were also isolated bearing a great burden, receiving insufficient support from patients, family, and the medical system., Competing Interests: The authors have no funding or conflicts of interest to disclose., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Asian family caregivers of older adults with dementia have stressful caregiving situations over long periods; they must become resilient to recover from adversity. A conceptual definition of resilience specific to Asian family caregivers is important for understanding their caregiving phenomena and the relationships with mental health and psychological well-being. The purpose of this concept analysis was to define resilience in family caregivers of Asian older adults with dementia using Walker and Avant's method. The findings of the analysis will guide future research about the modifiable factors that will prevent negative health outcomes in this population of caregivers., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Providing appropriate care to patients with dementia in acute care settings can be a challenge for healthcare professionals. A key factor is working closely with family caregivers., Purpose: This study aims to explore the difficulties and strategies involved in caring for patients with dementia who have been admitted to an acute care ward from the perspective of family caregivers., Methods: Exploratory research was conducted using a qualitative data collection approach. Data were collected by means of in-depth interviews carried out with participants. Semistructured interviews were conducted with nine participants. Content analysis was performed to analyze the data., Results: A number of themes and subthemes were identified based on the primary research purposes. The first theme is "vicious cycle due to multiple factors," with the following subthemes: (a) communication disturbance, (b) endless worries, (c) inadequate care skills of paid caregivers, and (d) physical and psychological exhaustion. The second theme is "do everything," with the following subthemes: (a) management of the behavioral and psychological symptoms of dementia, (b) constant accompaniment of the patient, and (c) seeking sources of support., Conclusions/implications for Practice: The results may be used to help healthcare professionals better anticipate the difficulties faced by family caregivers while providing assistance to patients with dementia and understand the related strategies they use. Acute care wards should consider the specific needs of family caregivers to ensure patients with dementia receive adequate care from the relevant parties in the ecological care chain during the care process., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2023 The Authors. Published by Wolters Kluwer Health, Inc.)

Background: Sudden cardiac death (SCD) in younger individuals is frequently caused by heritable cardiac conditions. The unexpected nature of SCD leaves families with many unanswered questions and an insufficient understanding of the cause of death and their own risk for heritable disease. We explored the experiences of families of young SCD victims upon learning about their relative's cause of death and how they perceive their own risk for heritable cardiac conditions., Methods: We conducted a qualitative descriptive study, by interviewing families of young (ages 12-45) SCD victims, who died between 2014 and 2018 from a heritable cardiac condition and were investigated by the Office of the Chief Coroner of Ontario, Canada. We used thematic analysis to analyze the transcripts., Results: Between 2018 and 2020, we interviewed 19 family members, of which 10 were males and 9 were females, ages ranging from 21 to 65 (average 46.2±13.1). Four main themes were revealed, each representing a distinct time period that families experience along a trajectory: (1) interactions between bereaved family and others, in particular coroners, shaped their search for answers about their relative's cause of death, with the types, formats, and timing of communication varying by case; (2) searching for answers and processing the cause of death; (3) incidental implications of the SCD event, such as financial strain and lifestyle changes contributed to cumulative stress; (4) receiving answers (or not) and moving forward., Conclusions: Families rely on communication with others, yet the type, formats, and timing of information received varies, which can influence families' experiences of processing the death (and its cause), their perceived risk and their decision to pursue cascade screening. These results may provide key insights for the interprofessional health care team responsible for the delivery and communication of the cause of death to families of SCD victims.

This article reports the results of a research project designed to identify the needs of family members and others who are coping with hospitalization of loved one in the intensive care unit, thus alleviating stress. The health care provider's viewpoints were also considered. Study participants were 9 family members of intensive care unit patients and 24 health care providers working in intensive care units. Data were collected and analyzed from 24 individual interviews (average of 35 minutes per interview) and 1 focus group interview (1 hour). The findings revealed 2 basic needs: (1) reducing concerns and (2) being supported. The first need could be addressed by open visitation, access to information, assurance of quality of care, and empowerment via education and involvement. The second need could be met by emotional support, access to facilities, and postdischarge support. Health care providers and decision makers can use these results to respond to these needs and increase people's satisfaction of intensive care unit services., Competing Interests: The authors report no actual or potential conflicts of interest., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Background/objective: To gain insight into both patients' and relatives' experiences with spiritual care (SC) in the intensive care unit (ICU)., Methods: Method used was qualitative interviewing. This was a thematic, topic-centered, biographical, and narrative approach, using semistructured interviews with thematic analysis. A purposive sampling method was used to select a sample of ICU patients and ICU patients' relatives. An interview guide facilitated individual, semistructured interviews. The interview data were recorded by means of note-taking and audio-recording. Verbatim transcripts were compiled for analysis and interpretation., Results: All 12 participants-7 ICU patients and 5 family members of 5 other ICU patients-experienced ICU admission as an existential crisis. Participants would appreciate the signaling of their spiritual needs by ICU health care professionals (HCPs) at an early stage of ICU admission and subsequent SC provision by a spiritual caregiver. They regarded the spiritual caregiver as the preferred professional to address spiritual needs, navigate during their search for meaning and understanding, and provide SC training in signaling spiritual needs to ICU HCPs., Discussion: Early detection of existential crisis signals with ICU patients and relatives contributes to the mapping of spiritual and religious needs. Spiritual care training of ICU HCPs in signaling spiritual needs by ICU patients and relatives is recommended. Effective SC contributes to creating room for processing emotions, spiritual well-being, and satisfaction with integrated SC as part of daily ICU care., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Objective: Several studies have investigated the impact of diaries in adult ICUs, which have been used as a tool to support recall and reduce post-traumatic stress disorder in patients and their families. We conducted a scoping review to determine the definition of ICU diaries, and the extent, range, and nature of research conducted on NICU and PICU diaries, describe their use and impact, as well as identify gaps in knowledge and areas for future research., Data Sources: The following databases were searched from inception to March 2022: Cumulated Index to Nursing and Allied Health Literature, Cochrane Library, Embase, PubMed, and American Psychological Association PsycINFO. Searches were also conducted in the following gray literature databases: Google Scholar, University of South Australia, and WorldCat., Study Selection: All studies that discussed the use and impact of diaries or journals involving patients (<18 yr old) in PICUs and NICUs and/or their family members were included., Data Synthesis: Sixteen studies were identified. Most studies defined diaries as daily entries written by nurses and/or family members regarding the patient's condition during their ICU admission. The majority reported that diaries were beneficial to children and their families as they helped to fill in memory gaps, provided a means to express their feelings, and served as effective health communication tools. Several gaps were identified: extent of the use of diaries as a means of communication, the significance of diaries as a coping mechanism for bereaved parents, and the impact of PICU diaries on the children, their families, and healthcare professionals., Conclusions: There is a paucity of data on the use of NICU and PICU diaries. Nonetheless, the limited data revealed that NICU and PICU diaries were beneficial to children and their families. Our review demonstrated a heterogeneity in the terminology, content, use of photos, and the author/s of the NICU and PICU diaries. Further research is needed to investigate the impact of the use of NICU and PICU diaries on patient-reported outcomes., Competing Interests: Dr. Lee’s institution received funding from the National Research Medical Council, Singapore. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2022 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Background: Family caregivers of head and neck cancer (HNC) patients undertook heavy care tasks and role responsibilities. They were facing multiple challenges during the patients' cancer trajectory., Objective: The aim of this study was to synthesize existing qualitative evidence regarding family caregivers' experiences of caring for HNC patients., Methods: A meta-aggregation approach was used. Articles were collected from MEDLINE, EMBASE, CINAHL, Web of Science, PsycINFO, and Cochrane Library. Supplementary resources were collected by scrutinizing reference lists and performing citation tracking., Results: A total of 20 studies were included and synthesized. Three meta-themes covering "accepting the diagnosis and treatment on patients: a distressing process," "facing changes of life and adapting to new roles," and "appreciating the external supports" were identified with 10 subthemes. There was high confidence in the evidence for "facing changes of life and adapting to new roles" and moderate confidence in the evidence for the other 2 meta-themes., Conclusions: Taking care of HNC patients is a distressing process. Caregivers took on role responsibilities and developed strategies to make adjustments to life changes, so as to provide better care for patients. External supports regarding caregiving and self-care were desired., Implications for Practice: Psychological distress was common among caregivers and calls for routine clinical screening. Providing caregivers with practical strategies to deal with daily caregiving tasks was crucial. Healthcare workers can play a critical role in providing tailored support in different caregiving stages. The findings informed the interventions and future research to improve HNC caregivers' experiences., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2022 The Authors. Published by Wolters Kluwer Health, Inc.)

Background: Most children with severe and profound intellectual disability (SPID) are cared for in their homes, according to current recommendations. Yet, their families face marked emotional, health, and economic challenges., Aims: The aim of this study was to examine family quality of life (FQOL) along with psychological and health factors among families who raise children with SPID at home versus those residing in residential care., Methods: Sixty caregivers of children aged 2 to 18 years (M = 8.81, SD = 4.62) with SPID (developmental quotient/intellectual quotient <35), living at home (38 caregivers-"home group") or in residential care (22 caregivers-"residential group"), completed the FQOL Survey, Beck Depression Inventory, Parental Stress Index, Shame and Guilt Scale, and Health and Demographic questionnaires., Results: FQOL for most domains and dimensions was rated better among families whose child resides in residential care compared with families who raise their child at home. Similarly, parental stress relating to the child was worse among families who raise their children at home. No significant differences between the 2 groups were noted on other psychological or health measures., Conclusion: Family and individual needs for those raising a child with SPID at home should be addressed when planning policy and interventions., Competing Interests: Disclosure: The authors declare no conflict of interest., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

Objectives: While palliative care needs are assumed to improve during ICU care, few empiric data exist on need trajectories or their impact on long-term outcomes. We aimed to describe trajectories of palliative care needs during ICU care and to determine if changes in needs over 1 week was associated with similar changes in psychological distress symptoms at 3 months., Design: Prospective cohort study., Setting: Six adult medical and surgical ICUs., Participants: Patients receiving mechanical ventilation for greater than or equal to 2 days and their family members., Measurements and Main Results: The primary outcome was the 13-item Needs at the End-of-Life Screening Tool (NEST; total score range 0-130) completed by family members at baseline, 3, and 7 days. The Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), and Post-Traumatic Stress Scale (PTSS) were completed at baseline and 3 months. General linear models were used to estimate differences in distress symptoms by change in need (NEST improvement ≥ 10 points or not). One-hundred fifty-nine family members participated (median age, 54.0 yr [interquartile range (IQR), 44.0-63.0 yr], 125 [78.6%] female, 54 [34.0%] African American). At 7 days, 53 (33%) a serious level of overall need and 35 (22%) ranked greater than or equal to 1 individual need at the highest severity level. NEST scores improved greater than or equal to 10 points in only 47 (30%). Median NEST scores were 22 (IQR, 12-40) at baseline and 19 (IQR, 9-37) at 7 days (change, -2.0; IQR, -11.0 to 5.0; p = 0.12). There were no differences in PHQ-9, GAD-7, or PTSS change scores by change in NEST score (all p > 0.15)., Conclusions: Serious palliative care needs were common and persistent among families during ICU care. Improvement in needs was not associated with less psychological distress at 3 months. Serious needs may be commonly underrecognized in current practice., Competing Interests: Drs. Cox, Ashana, Olsen, Casarett, Naglee, Riley, Johnson, and Docherty received support for article research from the National Institutes of Health (NIH). Drs. Ashana and Olsen disclosed government work. Drs. Olsen’s, Casarett’s, and Docherty’s institutions received funding from the NIH. Dr. Casarett received funding from Curio Wellness, the American Academy of Hospice and Palliative Medicine, Melix, and Clever Leaves Bristol Hospice DisposeRx. Dr. Dempsey disclosed work for hire. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2022 by the Society of Critical Care Medicine and Wolters Kluwer Health, Inc. All Rights Reserved.)

Objective: We aimed to identify which set of components differentiates the ICU diaries that were effective in reducing psychologic symptoms after critical illness., Data Sources: We searched the online databases MEDLINE, OVID, Embase, and EBSCOhost from inception to December 2021., Study Selection: Randomized controlled trials (RCTs) of the ICU diary were included, irrespective of the language, with samples of adult patients (≥ 18 yr old) and/or their relatives hospitalized in an ICU for more than 24 hours. Two qualitative syntheses on patients' and healthcare providers' perceptions on the ICU diary were included., Data Extraction: Four findings were extracted from the qualitative synthesis of patients' perspectives on the ICU diary. From the RCTs, we extracted the components of the ICU diary and whether the patients were ventilated for at least 3 days. We reported the outcome as effective or not, regardless of the psychiatric symptoms and diagnostic tools used for evaluation. We built a matrix in which each column represented a recommendation for an intervention component derived from the qualitative review, and each row represented whether the components of an individual trial's intervention matched any of the recommendations., Data Synthesis: Eight RCTs were included in the final analysis. The sample of five studies consisted of patients under mechanical ventilation (MV) for at least 3 days. Two were positive trials. Three RCTs included family members, and two of those were positive trials., Conclusions: For patients under MV for at least 3 days, the ICU diaries that were effective in preventing psychiatric symptoms after critical illness were written by the ICU staff, delivered after hospital discharge, and read with a healthcare professional in order to better understand the diary and the ICU stay. For family members, the presence of photographs was the only characteristic identified a successful ICU diary., Competing Interests: The authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2022 by the Society of Critical Care Medicine and Wolters Kluwer Health, Inc. All Rights Reserved.)

Background: Strokes may lead to increased dependency, which may impact the daily lives of patients with stroke and their family caregivers. Caring for a poststroke family member in Indonesia may differ from other countries in terms of extending beyond the provision of hands-on care. Contradictions and gaps in the factors affecting caregiver depression have been highlighted in a review of the relevant literature. Few studies have examined comprehensively the contradictory factors, uncovered factors, and cultural and spiritual values affecting this phenomenon., Purpose: This study was designed to identify the factors associated with depression in family caregivers of patients with stroke in Indonesia. We examined the following factors related to caregiver depression: demographic characteristics of the caregiver and care recipient, functional ability of the patient, caregiver self-efficacy, knowledge regarding stroke care, and spiritual values., Methods: In this cross-sectional study, 157 primary caregivers completed questionnaires involving depression factors during face-to-face interviews. The data were analyzed using multiple logistic regression., Results: The prevalence of depression among the participants was 56.7%. The overall mean ages of the participants and their care recipients were 43.6 and 57.1 years, respectively. In this study, 65.6% of the participants were female, and 70.1% lacked knowledge regarding stroke care. In the early caregiving phase, caregiver depression was more likely to occur in female caregivers with back pain and long care hours. Self-efficacy in achieving respite time was found to be associated with a lower risk of depression., Conclusions/implications for Practice: Caregivers' gender, presence of back pain, sufficient respite time, and time since stroke occurrence should be considered when providing knowledge, skills, and coping strategies to caregivers to help them adapt to their caregiving role, maintain their quality of life, and prevent the onset of depression. Understanding the factors influencing caregiver depression may help nursing professionals identify individuals at a higher risk of depression early on and provide critical follow-up and early access to supportive counseling., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2022 The Authors. Published by Wolters Kluwer Health, Inc.)

Family caregivers provide round-the-clock care to their family members who had a stroke. The detrimental effects of caregiving on caregiver's health would lead to the abandonment of caregiver role and institutionalization of stroke survivors. This study aims to determine the factors associated with the perceived health status of family caregivers to stroke survivors. This study conducted a secondary analysis of the baseline data of 142 family caregivers of stroke survivors nested within a longitudinal randomized controlled trial. Potential factors were identified according to the Pittsburgh Mind-Body Center model and were analyzed with hierarchical multiple regression models. The results indicated that stroke caregivers exhibited comparable perceived physical health with general population but poorer perceived mental health. Severity of depressive symptoms (β = -0.37, P < .001) remained the strongest and most significant factor associated with perceived mental health, followed by confidence in problem-solving (β = -0.21, P < .05). Moreover, caregiving competence (β = 0.29, P < .001) was the sole significant psychological factor associated with perceived physical health. Caregiving competence, problem-solving abilities, and severity of depressive symptoms are significant modifiable correlates of the perceived health of caregivers. Intervention for improving these psychological responses of caregivers is suggested incorporated in stroke rehabilitation programs., Competing Interests: The authors have no funding and conflicts of interest to disclose., (Copyright © 2022 the Author(s). Published by Wolters Kluwer Health, Inc.)

The article focuses on the use of the concept of family strengths to improve nursing care practice. It mentions that nurses could utilize the conceptual framework of family strengths as a mechanism to encourage strong and healthy relationship during family crises. Moreover, the author believes that nurses could assist families determine their hopes and visions for the future instead of looking at elements that contribute to family problems.

Background: Family caregivers experience psychological distress or physical strain that may lead to an increased risk of cardiovascular disease (CVD) morbidity and mortality., Objective: This systematic review aimed to describe the current evidence and gaps in the literature on measures used to assess CVD outcomes in family caregivers, the association of caregiving with CVD incidence/risk outcomes, and associated factors in family caregivers of patients with chronic disease., Methods: Medline, PubMed, CINAHL, Web of Science, and Google Scholar were searched for English-language, peer-reviewed studies published from 2008 to 2020 that examined CVD incidence and risk among family caregivers of adults with chronic conditions., Results: Forty-one studies were included in this review. The measures used to assess CVD risk were categorized into biochemical, subclinical markers, components of metabolic syndrome, and global risk scores. Compared with noncaregivers, caregivers were more likely to have higher CVD incidence rates and objectively measured risk. Cardiovascular disease risks were also increased by their caregiving experience, including hours/duration of caregiving, caregivers' poor sleep status, psychological symptoms, poor engagement in physical/leisure activities, and care recipient's disease severity., Conclusions: Although there were limited longitudinal studies in caregivers of patients with diverse health conditions, we found evidence that caregivers are at high risk of CVD. Further research for various caregiver groups using robust methods of measuring CVD risk is needed. Caregiver factors should be considered in developing interventions aimed at reducing CVD risk for caregivers., Competing Interests: The authors have no funding or conflicts of interest to disclose., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Objectives: To identify the prevalence of screening criteria for acute and posttraumatic stress disorders (PTSDs) and stress symptoms among family members of children in the PICU for more than 8 days and examine risk factors for stress symptoms., Design: Secondary analysis of data from a randomized trial of a palliative care intervention conducted between 2010 and 2014., Setting: An urban pediatric hospital in Seattle, WA., Subjects: The sample included 377 family members of 220 children., Interventions: Family Communication Study., Measurements and Main Results: Outcomes were symptom scores and diagnostic screening criteria for acute stress disorder (ASD) and PTSD. Predictors included demographic- and admission-related characteristics and hypothesized risk factors for developing stress-related mental health disorders. The mean score for acute stress symptoms during the ICU stay was 40.3 (sd = 13.8) and 59 family members in total met diagnostic screening criteria for ASD during hospitalization (15.6%). At 3-month follow-up, the mean score for posttraumatic stress symptoms was 30.8 (sd = 12.9) and 52 family members met diagnostic criteria for PTSD (13.8%). Factors associated with meeting ASD screening criteria were unplanned admission and poorer family relationships. Factors associated with PTSD symptoms and diagnosis were longer length of stay, meeting ASD criteria during admission, child's death, and less perceived social support., Conclusions: Meeting screening criteria for PTSD was associated with demographic, length of stay, and family relationships among family members of seriously ill children. PTSD outcomes were higher among family members whose child died. This study helps identify risk factors that can be used to target needed psychosocial screening, monitoring and support during and following a prolonged PICU admission, as well as family-centered interventions and supportive bereavement intervention for the family members of a deceased child., Competing Interests: Drs. Lindhorst’s and Doorenbos’s institutions received funding from the National Institutes of Health (NIH). Drs. Lindhorst, Starks, and Doorenbos received support for article research from the NIH. Dr. Starks’ institution received funding from University of Washington. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2022 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Objective: The aim of the study was to explore experiences from the next of kin's perspective of a new involvement method in the regulatory investigation process of adverse events causing patient death., Methods: The study design was a qualitative process evaluation of the new involvement method in two Norwegian counties. Next of kin who had lost a close family member in an adverse event were invited to a 2-hour face-to-face meeting with regulatory inspectors to shed light on the event from the next of kin's perspective. Data collection involved 18 interviews with 29 next of kin who had participated in the meeting and observations (20 hours) of meetings from 2017 to 2018. Data were analyzed using a thematic content analysis., Results: Next of kin wanted to be involved and had in-depth knowledge about the adverse event and the healthcare system. Their involvement extended beyond sharing information, and some experienced it as having a therapeutic effect and contributing to transparency and trust building. The inspectors' professional, social, and human skills determined the experiences of the involvement and were key for next of kin's positive experiences. The meeting was emotionally challenging, and some next of kin found it difficult to understand the regulators' independent role and suggested improving information given to the next of kin before the meeting., Conclusions: Although the meeting was emotionally challenging, the next of kin had a positive experience of being involved in the investigation and believed that their information contributed to improving the investigation process., Competing Interests: E.H. is an employee at the County Governor involved in the study. The other authors disclose no conflict of interest., (Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc.)

Introduction: Individuals with early-onset Alzheimer's disease face many challenges and barriers older adults with late-onset Alzheimer's do not. Unfortunately, information about early-onset Alzheimer's disease is in its infancy stage in comparison with late-onset Alzheimer's., Purpose/aims: The purpose of this study was to examine the lived experiences of a 54-year-old man with early-onset Alzheimer's disease and his family (wife, sister, and mother) to understand the effects on the family unit., Design: Interpretive phenomenology was used to guide this study., Methods: All participants completed 2 in-person one-on-one interviews, and a final interview was completed online. Field notes, member checks, and triangulation were used to enhance the study's credibility., Results: This article focuses on the theme "'A big curve ball': Disruption of the life cycle." Participants indicated the major financial and social challenges experienced by Joe and his wife. Furthermore, participants emphasized the importance of acceptance and maintaining a positive attitude to help cope with Joe's diagnosis., Conclusions: The accounts of Joe and his family shed light on an area relatively void in the literature. In addition, Joe's experiences may provide comfort for other families facing early-onset Alzheimer's disease. The implications for community health nurses in assisting individuals with early-onset Alzheimer's disease and their families are discussed., Competing Interests: The authors report no conflicts of interest., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

You can support a family member's treatment plan without taking charge., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Abstract: The purpose of this study is to investigate the predictive factors of home discharge for rehabilitation patients with cancer bone metastasis.Cancer patients with bone metastasis who underwent rehabilitation between April 2014 and March 2017 were retrospectively enrolled. Data on discharge destination were collected from medical records as outcomes. Multiple regression analyses were carried out to investigate the predictive factors of home discharge.Ninety-eight patients (mean age: 68.6 years, 42 females and 56 males) were included. Fifty patients were discharged home, 38 patients were discharged to other facilities, and 10 patients died. There were no skeletal-related events among these patients during their hospital stay. The receiver-operating curve for the predictive factors for home discharge of the Barthel Index at admission, Eastern Cooperative Oncology Group Performance Status at admission, and number of immediate family members living at home were 60 points (area under the curve [AUC] = 0.74, sensitivity = 0.6400, 1-specificity = 0.2766), 2 score (AUC = 0.65, sensitivity = 0.5400, 1-specificity = 0.2222), and 1 family member (AUC = 0.65, sensitivity = 0.9592, 1-specificity = 0.7222), respectively.In order to plan for cancer patients with bone metastasis to be discharged home, it is important to take into consideration the patients' Barthel Index and Performance Status at the time of hospital admission and the number of immediate family members living at home., Competing Interests: The authors have no funding and conflicts of interest to disclose., (Copyright © 2021 the Author(s). Published by Wolters Kluwer Health, Inc.)

Objective: To obtain insights into the effects of surgical training on the well-being of support persons., Summary Background Data: Surgical trainee wellness is a critical priority among surgical educators and leaders. The impact of surgical training on the wellness of loved ones who support trainees has not been previously studied., Methods: This qualitative study employs semi-structured interviews of 32 support persons of surgical trainees at a single tertiary care center with multiple surgical specialty training programs. Interviews focused on perceptions about supporting a surgical trainee. Transcripts underwent thematic analysis with semantic and conceptual coding. Key themes regarding the effects that caring for a trainee has on support persons are reported., Results: Three key themes were identified: (1) Sacrifices-support persons report significant tangible and intangible sacrifices, (2) Delaying life-life is placed on hold to prioritize training, and (3) A disconnect-there is a disconnect and a lack of recognition of support person needs that require greater awareness and targeted interventions., Conclusions: The impact of surgical training can extend beyond trainees and can affect the wellness of their support persons who endure the effects of training alongside trainees. Programs should be aware of these effects and develop meaningful strategies to aid trainees and their support persons., Competing Interests: The authors report no conflicts of interest., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Competing Interests: Dr. Ely received funding from the National Institutes of Health (NIH), Veterans Affairs, Pfizer, Orion, Lilly, Masimo, and Kohler; he received support for article research from the NIH. The remaining authors have disclosed that they do not have any potential conflicts of interest.

Objectives: To investigate whether the effect of a flexible ICU visiting policy that includes flexible visitation plus visitor education on anxiety symptoms of family members is mediated by satisfaction and involvement in patient care., Design: We embedded a multivariable path mediation analysis within a cluster-randomized crossover trial as a secondary analysis of The ICU Visits Study (ClinicalTrials.gov number: NCT02932358)., Setting: Thirty-six medical-surgical ICUs in Brazil., Patients: Closest relatives of adult ICU patients., Interventions: Flexible visitation (12 hr/d) supported by family education or usual restricted visitation (median, 1.5 hr/d)., Measurements and Main Results: Overall, 863 family members were assessed (mean age, 44.7 yr; women, 70.1%). Compared with the restricted visitation (n = 436), flexible visitation (n = 427) resulted in better mean anxiety scores (6.1 vs 7.8; mean difference, -1.78 [95% CI, -2.31 to -1.22]), as well as higher standardized scores of satisfaction (67% [95% CI, 55-79]) and involvement in patient care (77% [95% CI, 64-89]). The mediated effect of flexible visitation on mean anxiety scores through each incremental sd of satisfaction and involvement in patient care were -0.47 (95% CI, -0.68 to -0.24) and 0.29 (95% CI, 0.04-0.54), respectively. Upon exploratory analyses, emotional support, helping the ICU staff to understand patient needs, helping the patient to interpret ICU staff instructions, and patient reorientation were the domains of involvement in patient care associated with increased anxiety., Conclusions: A flexible ICU visiting policy reduces anxiety symptoms among family members and appears to work by increasing satisfaction. However, increased participation in some activities of patient care as a result of flexible visitation was associated with higher severity of anxiety symptoms., Competing Interests: Drs. Rosa, Sganzerla, Schneider, Robinson, Kochhann, da Silva, Medeiros, and Falavigna report grants from Brazilian Ministry of Health during the conduct of study. Drs. Rosa’s, Sganzerla’s, and Medeiros’s institutions received funding from Brazilian Ministry of Health. Dr. da Silva received funding from Brazilian Ministry of Health. Dr. Amaral’s institution received funding from Hospital Moinhos de Vento. Drs. Amaral, Prestes, and Medeiros disclosed government work. Dr. Prestes’ institution received funding from Hospital Universitário da Universidade Federal do Piauí. Dr. Falavigna received funding from Roche, Novartis, Abbvie, Boehringer Ingelheim, Ultragenix, PTC Therapeutics, and Sanofi Genzime, and he received support for article research from the Canadian Institutes of Health Research. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2021 by the Society of Critical Care Medicine and Wolters Kluwer Health, Inc. All Rights Reserved.)

Purpose/objectives: Children in our nation are experiencing the social, emotional, and physical impacts of an unprecedented time in history. Advanced practice nurses prepared as psychiatric clinical nurse specialists and nurse practitioners bring therapeutic interventions, psychopharmacologic management, and systems thinking to clinical environments of care. Insight into the mental health of youth and families and how clinical nurse specialists may provide solutions for forthcoming challenges is discussed., Description of the Project/program: Barriers to mental healthcare such as the invisibility of nurses at state and federal levels must be eradicated to mitigate the mental health challenges that youth, families, and communities endure. Contemporary issues such as effects of social media, stigma, and suicide present burdens that can be moderated through nursing interventions., Outcome: The psychiatric clinical nurse specialist provides evidence and community-based nursing interventions that, through early identification and advocacy, contribute to positive mental health outcomes for youth and families., Conclusion: The need for well-educated advanced practice nurses has never been greater for our vulnerable populations of children, adolescents, and families with mental health challenges. Nurse-delivered programs demonstrate that interventions are necessary for communication, psychoeducation, and prevention of consequences from unacknowledged social media, stigma, and suicide problems., Competing Interests: The authors report no conflicts of interest., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Abstract: We aimed to explore the real experience of patients after liver transplantation in the intensive care unit (ICU).Objective sampling method was used to select patients transferred to the ICU in 10 hospitals in Zhuhai from May 2018 to August 2020. Patients need liver transplantation due to advanced liver cancer and decompensated cirrhosis. The eligibility criteria of patients mainly included liver transplant patients who were clear-minded and willing to participate in the study and had stayed in ICU. Phenomenological research methods and in-depth interviews were used in this qualitative study.The results showed that the true experience of patients after liver transplantation during ICU stay was summarized into four themes. The strengths of our qualitative research are that we can find the trend from a phenomenon through interviews and other methods to provide a directional foundation for future quantitative research. Its limitations are that it requires a lot of manpower and time, and its objectivity and universality are limited.Hospitalization experience in the ICU may lead to many negative experiences for liver transplant patients. Nurses should fully understand and pay attention to the psychological changes in patients. Nurses should take effective targeted measures to reduce or eliminate patients' fear of ICU stay and promote rehabilitation., Competing Interests: The authors report no conflicts of interest., (Copyright © 2021 the Author(s). Published by Wolters Kluwer Health, Inc.)

Background: Diagnosis of hematological cancer affects patients and caregivers as a unit. Few studies have focused on the relationship between hematological cancer patients and their caregivers., Objective: To explore (a) the interaction between patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers and (b) perceived changes in lives of patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers., Methods: We used a qualitative descriptive design with a dyadic approach. The study sample included 11 patients with hematological cancer and 11 family caregivers selected through purposive sampling. In-depth interviews were conducted using a semistructured interview format., Results: As a result of a content analysis, 3 themes emerged: hidden emotions, companionship, and life changes. Both the patients and the family caregivers described coping by hiding their feelings, thoughts, and needs and reducing communication with each other. Dyad members described commitment to each other and an increase in confidence. In addition, the patients and the family caregivers experienced changes in their roles and perspectives during the diagnosis and treatment process., Conclusion: Patients with hematological cancer and family caregivers need nurses' support. Nurses should be prepared to provide patient-caregiver-based interventions., Implication for Practices: It is important that nurses take action to strengthen the relationship between patients and their caregivers, particularly with a focus on carrying out interventions to improve communication between them. Nurses can also strengthen dyads' coping by drawing attention to positive developments in their perspectives and relationships., Competing Interests: The authors have no funding or conflicts of interest to disclose., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

Background: The treatment-related decision-making process is a highly emotional time for parents of children with incurable cancer, and they tend to continue the cancer-directed treatment even when they realize that there is no cure for their child., Objective: To evaluate whether parents involved in different treatment decisions regretted their treatment decision after their child's death., Methods: We collected prospective data from 418 parents of children who died of incurable cancer after receiving cancer care at 1 of 4 hospitals. We assessed parent decisional regret and its association with the type of treatment decision made (non-cancer-directed vs cancer-directed). Propensity score-matched analysis (at a ratio of 1:1) was performed., Results: One hundred forty-eight parents (35.4%) reported heightened regret. Two isonumerical arms with 103 (non-cancer-directed) and 103 (cancer-directed) resulted after propensity score matching. Parents with a cancer-directed treatment decision (relative risk, 1.53; 95% confidence interval, 1.24-1.90; P = .002) were more likely to report decisional regret compared with those with a non-cancer-directed decision., Conclusion: Bereaved parents with a cancer-directed treatment decision are more likely to experience increased regret for their decision than bereaved parents involved in a non-cancer-directed treatment decision., Implications: Shared-decision aids should be prepared for young parents with low education to improve disease-related knowledge, accurate risk perceptions, and options congruent with parents' values., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.)