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

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

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

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

Sprinting in a Marathon: Nursing Staff and Nurse Leaders Make Meaning of Practicing in COVID-19 Devoted Units Pre-Vaccine.

Objective: To describe the lived experience of nursing staff and nurse leaders working in COVID-19 devoted units (intensive care or medical unit) prior to vaccine availability. Research Design: Qualitative phenomenological design with a focus group approach. Methods: The study team recruited a convenience sample of nursing staff (nurses, and nursing assistants/nurse technicians) and nurse leaders (managers, assistant nurse managers, clinical nurse specialists, and nurse educators) at an academic medical center in the midwestern United States. Focus groups and individual interviews were conducted to encourage participants to describe their (1) experiences as nursing professionals, (2) coping strategies, and (3) perspectives about supportive resources. Moral distress was measured with the moral distress thermometer and qualitative data were analyzed with Giorgi-style phenomenology. Results: We conducted 10 in-person focus groups and five one-on-one interviews (n = 44). Seven themes emerged: (1) the reality of COVID-19: we are sprinting in a marathon; (2) acute/critical care nurse leaders experience unique burdens; (3) acute/critical care staff nurses experience unique burdens; (4) meaning of our lived experience; (5) what helped us during the pandemic; (6) what hurt us during the pandemic; and (7) we are not okay. Participants reported a moderate level of moral distress (M = 5.26 SD = 2.31). They emphasized that peer support was preferred over other types of support offered by the healthcare organization. Participants expressed positive feedback about the focus group experience and commented that group processing validated their experiences and helped them "feel heard." Conclusion: These findings affirm the need for trauma-informed care and grief support for nurses, interventions that increase meaning in work, and efforts to enhance primary palliative communication skills. Study findings can inform efforts to tailor existing interventions and develop new, more comprehensive resources to meet the psychosocial needs of nursing staff and nurse leaders practicing during a pandemic.

Symptom Assessment for Mechanically Ventilated Patients: Principles and Priorities: An Official American Thoracic Society Workshop Report.

Mechanically ventilated patients experience many adverse symptoms, such as anxiety, thirst, and dyspnea. However, these common symptoms are not included in practice guideline recommendations for routine assessment of mechanically ventilated patients. An American Thoracic Society-sponsored workshop with researchers and clinicians with expertise in critical care and symptom management was convened for a discussion of symptom assessment in mechanically ventilated patients. Members included nurses, physicians, a respiratory therapist, a speech-language pathologist, a critical care pharmacist, and a former intensive care unit patient. This report summarizes existing evidence and consensus among workshop participants regarding 1) symptoms that should be considered for routine assessment of adult patients receiving mechanical ventilation; 2) key symptom assessment principles; 3) strategies that support symptom assessment in nonvocal patients; and 4) areas for future clinical practice development and research. Systematic patient-centered assessment of multiple symptoms has great potential to minimize patient distress and improve the patient experience. A culture shift is necessary to promote ongoing holistic symptom assessment with valid and reliable instruments. This report represents our workgroup consensus on symptom assessment for mechanically ventilated patients. Future work should address how holistic, patient-centered symptom assessment can be embedded into clinical practice.

The early impact of COVID-19 on intensive care nurses' personal and professional well-being: A qualitative study.

OBJECTIVE: To describe the impact of the COVID-19 pandemic on intensive care nurses personal and professional well-being. RESEARCH METHODOLOGY/DESIGN: A descriptive, qualitative design was used. Two nurse researchers conducted one-on-one interviews via Zoom or TEAMS using a semi-structured interview guide. SETTING: Thirteen nurses who were working in an intensive care unit in the United States participated in the study. A convenience sample of nurses who completed a survey in the larger parent study provided an email and were contacted by the research team to participate in interviews to discuss their experiences. MAIN OUTCOME MEASURES: An inductive approach to content analysis was used to develop categories. FINDINGS: Five major categories emerged from the interviews: (1) We are not heroes, (2) inadequate support, (3) helplessness, (4) exhaustion, and (5) Nurses the second victim. CONCLUSION: The COVID-19 pandemic has taken a physical and mental health toll on intensive care nurses. The impact of the pandemic on personal and professional well-being has serious implications for retaining and expanding the nursing workforce. IMPLICATIONS FOR CLINICAL PRACTICE: This work highlights the importance for bedside nurses to advocate for systemic change to improve the work environment. It is imperative for nurses to have effective training including evidence-based practice and clinical skills. There needs to be systems in place to monitor and support nurses' mental health and encourage bedside nurses to use self-care methods and practices to prevent anxiety, depression, post-traumatic stress disorder and burnout.

COVID-19 Vaccine Acceptance or Refusal Among US Nurses: A Descriptive Cross-Sectional Study.

INTRODUCTION: Nurse turnover has accelerated during the COVID-19 pandemic. Nurse refusal of mandated vaccines contributes to understaffing and affects patient health outcomes. The purposes of this study were to describe (1) nurse reasons for COVID-19 vaccine decisions and (2) the relationship between vaccine status and nurse characteristics. METHODS: This cross-sectional descriptive study employed a survey of US nurses who worked in nursing during the COVID-19 pandemic. The survey included a free-text question about COVID-19 vaccine uptake rationale, self-reported vaccine acceptance/refusal, and demographic data. RESULTS: Of the 1682 participants, 11.2% refused the COVID-19 vaccine. Higher education level was correlated with greater vaccine acceptance rates (P < 0.001). Themes for vaccine rationale included safeguarding well-being, trust in the science, coercion to vaccinate, perceived immunity, and concern about preexisting health conditions. CONCLUSIONS: The risks of COVID-19 vaccine mandates may be greater than the potential benefits given the potential for compounding workforce attrition during a nursing staffing crisis. Further research is needed to outline the relationships between vaccine education, advocacy, and vaccine uptake among nurses.

Usability Testing of an iPad Communication Application for Mechanically Ventilated Patients.

BACKGROUND: Patient communication challenges during mechanical ventilation can negatively impact symptom management and psychological recovery. Alternative communication (AC) aids have the potential to improve mechanically ventilated (MV) patient experiences. OBJECTIVES: This study evaluated the feasibility and usability of a communication application on a tablet (iPad). METHOD: A single-group pilot study was guided by the augmentative and alternative communication acceptance model. We recruited patients from 1 medical intensive care unit. Existing communication application software (Proloquo2Go) was tailored to MV patients' needs. Usability testing included patient communication of 5 messages with data collected on success, message completion time, and patient feedback. RESULTS: Ten patients with a mean age of 50 years (SD, 16.7) were enrolled. Of the 7 patients able to complete usability testing, 85.7% found the device easy to use, and 100% wanted the iPad available for their use when on the ventilator. Three patients were extubated immediately after usability testing. Two patients preferred other modes of communication (writing). Two patients used the iPad as their primary mode of communication during the remainder of their time on the ventilator. Nurse feedback on the communication application was positive. DISCUSSION: Tablet-based communication applications can be successfully used by MV patients and should be considered as 1 tool to support effective patient communication during mechanical ventilation. Future research is needed to identify which patients may be most likely to benefit from the availability of these devices.

Impact of COVID-19 on Intensive Care Unit Nurse Duty of Care and Professional Roles: A Qualitative Content Analysis.

Background: Nurse duty of care, the balance between nursing occupational obligations to provide care, the personal costs for providing such care, and the reward for providing care, has been significantly altered by the COVID-19 pandemic. ICU nurses are increasingly burdened with higher personal costs to fulfill their jobs, but little additional reward for continuing to provide care. Objectives: The purpose of this study was to examine the impact of the COVID-19 pandemic on the duty of care balance among ICU nurses who manage COVID-19 patients. Design: This was a descriptive qualitative study using semi-structured interviews. Methods: Nurses were recruited for a parent study on ICU nursing during COVID-19; this is a secondary analysis of the interviews that took place during the parent study. Content analysis was utilized to identify themes from interview transcripts. Results: Thirteen nurses participated in interviews. Nurses reported betrayal at perceived breeches in their duty of care agreement by their employers, the general public, and national health authorities. They described alterations to previous standards of care such as significantly increased workloads, worsening understaffing, and changes to patient care expectations that were implemented for reasons other than betterment of patient care. Nurses reported they felt a moral obligation to provide care, however they experienced disempowerment and burnout that affected them both in and out of the workplace. Conclusion: The COVID-19 pandemic has affected several aspects of the duty of care balance, resulting in a duty of care balance that is inequitable to nurses. Imbalance in the effort, risks, and rewards for nursing professionals may contribute to nurse burnout. Relevance to Clinical Practice: This research highlights the need for healthcare administrators to consider resource allocation, nurse appreciation, and commensurate compensation for professional nurses.

Critical Care Nurse Burnout, Moral Distress, and Mental Health During the COVID-19 Pandemic: A United States Survey.

BACKGROUND: The COVID-19 pandemic has and will continue to have a tremendous influence on intensive care unit (ICU) nurses' mental health. OBJECTIVES: The purpose of this study was to describe the impact of COVID-19 on nurse moral distress, burnout, and mental health. METHODS: Between October 2020 and January 2021 this descriptive study recruited a national sample of nurses who worked in the ICU during the COVID-19 pandemic through American Association of Critical Care Nurses newsletters and social media. RESULTS: A total of 488 survey responses were received from critical care nurses working in the U.S. during the COVID pandemic. Over two thirds of respondents experienced a shortage of personal protective equipment (PPE). Nurse respondents reported moderate/high levels of moral distress and burnout. Symptoms of moderate to severe depression and anxiety were reported by 44.6% and 31.1% of respondents, respectively. Forty-seven percent of respondents were at risk for having posttraumatic stress disorder (PTSD). Lack of perceived support from administration and shortage of PPE were associated with higher levels of burnout, moral distress, and PTSD symptoms. CONCLUSIONS: Respondents had higher anxiety and depression than the general population and higher risk for having PTSD than recent veterans or patients after traumatic injury. High levels of reported burnout and moral distress increase the risk of nurses leaving ICU practice or the profession. This study offers important insights about the mental health of nurses during a global pandemic that can guide the development of customized interventions for ICU nurses related to this health care crisis.

A Scoping Review of the Experiences of Adolescents and Young Adults in the ICU, Their Family Members, and Their Health Care Team.

Adolescents and young adults (AYAs) may be cared for in a pediatric or adult ICU. Specific needs of AYAs differ from those of populations typically found in either ICU. This review identifies research focused on experiences of AYAs in ICUs, their family members, and the health care professionals who care for them, revealing limited research about AYAs in ICUs: 10 articles met inclusion criteria and findings revealed that AYAs want to be treated as individuals and need health care professionals to partner with them. Further research is needed to inform developmentally appropriate care and improve serious illness communication.

Systematic review of family engagement interventions in neonatal, paediatric, and adult ICUs.

AIMS AND OBJECTIVES: The purpose of this systematic review was to evaluate interventions that have been used to engage families in direct care activities (active family engagement) in adult, paediatric, and neonatal intensive care unit (ICU) settings. BACKGROUND: Family engagement is universally advocated across ICU populations and practice settings; however, appraisal of the active family engagement intervention literature remains limited. SEARCH STRATEGY: Ovid Medline, PsycArticles & PsycInfo, Scopus, and CINAHL were searched for family interventions that involved direct care of the patient to enhance the psychological, physical, or emotional well-being of the patient or family in neonatal, paediatric, or adult ICUs. INCLUSION/EXCLUSION CRITERIA: Studies were included if an active family engagement intervention was evaluated. Studies were excluded if they were not published in English or reported non-interventional research. RESULTS: A total of 6210 abstracts were screened and 19 studies were included. Most studies were of low to moderate quality and were conducted in neonatal ICUs within the United States. Intervention dosage and frequency varied widely across studies. The interventions focused on developmental care (neonatal ICU) and involved families in basic patient care. Family member outcomes measured included satisfaction, stress, family-centred care, confidence, anxiety, and depression. Most studies found improvements in one or more outcomes. CONCLUSIONS: There is a paucity of literature about active family engagement interventions, especially in adult and paediatric populations. The optimal dosage and frequency of family engagement interventions remains unknown. Our systematic review found that data are limited on the relationship between family engagement and patient outcomes, and provides a timely appraisal to guide future research. RELEVANCE TO CLINICAL PRACTICE: Further research on the efficacy of family engagement interventions is warranted. The translation of active family engagement interventions into clinical practice should also be supported.

Critical Care Nurses' Experiences During the COVID-19 Pandemic: A US National Survey.

BACKGROUND: Given critical care nurses' high prepandemic levels of moral distress and burnout, the COVID-19 pandemic will most likely have a tremendous influence on intensive care unit (ICU) nurses' mental health and continuation in the ICU workforce. OBJECTIVE: To describe the experiences of ICU nurses during the COVID-19 pandemic in the United States. METHODS: Nurses who worked in ICUs in the United States during the COVID-19 pandemic were recruited to complete a survey from October 2020 through early January 2021 through social media and the American Association of Critical-Care Nurses. Three open-ended questions focused on the experiences of ICU nurses during the pandemic. RESULTS: Of 498 nurses who completed the survey, 285 answered the open-ended questions. Nurses reported stress related to a lack of evidence-based treatment, poor patient prognosis, and lack of family presence in the ICU. Nurses perceived inadequate leadership support and inequity within the health care team. Lack of consistent community support to slow the spread of COVID-19 or recognition that COVID-19 was real increased nurses' feelings of isolation. Nurses reported physical and emotional symptoms including exhaustion, anxiety, sleeplessness, and moral distress. Fear of contracting COVID-19 or of infecting family and friends was also prevalent. CONCLUSIONS: Intensive care unit nurses in the United States experienced unprecedented and immense burden during the COVID-19 pandemic. Understanding these experiences provides insights into areas that must be addressed to build and sustain an ICU nurse workforce. Studies are needed to further describe nurses' experiences during the COVID-19 pandemic and identify effective resources that support ICU nurse well-being.

Intensive Care Unit Nurse: Could We Call a Palliative Care Consult? Intensive Care Unit Provider: It's Too Early. Palliative Care Integration in the Intensive Care Unit: The Struggle to Translate Evidence Into Practice.

Despite evidence regarding the value of palliative care, there remains a translation-to-practice gap in the intensive care setting. The purpose of this article is to describe challenges and propose solutions to palliative care integration through the presentation and discussion of a critical care patient scenario. We also present recommendations for a collaborative palliative care practice framework that holds the potential to improve quality of life for patients and families. Collaborative palliative care is characterized by close working relationships with families, interprofessional intensive care unit healthcare teams, and palliative care specialists. The shortage of palliative care specialists has become a pressing policy and practice issue and highlights the importance of increasing primary palliative care delivery by the intensive care team. Underexplored aspects of collaborative palliative care delivery include the interprofessional communication required, identification of key skills, and expected outcomes. Increased recognition of intensive care unit palliative care as a process of engagement among nurses, providers, patients, and their family members heralds a vital culture shift toward collaborative palliative care. The interprofessional palliative specialist team has the expertise to support intensive care teams in developing their primary palliative skills and recognizing when specialist palliative care support is required. Promotion of strategic palliative care delivery through this collaborative framework has the potential to decrease suffering among patients and families and reduce moral distress among healthcare professionals.

Patients' experiences of recovery: Beyond the intensive care unit and into the community.

AIMS: To understand barriers and facilitators of recovery for critical illness survivors', who are discharged home from the hospital and do not have access to dedicated outpatient care. DESIGN: Multi-site descriptive study guided by interpretive phenomenology using semi-structured interviews. METHODS: Interviews were conducted between December 2017 -July 2018. Eighteen participants were included. Data were collected from interview recordings, transcripts, field notes, and a retrospective chart review for sample demographics. Analysis was completed using Interpretive Phenomenological Analysis which provided a unique view of recovery through the survivors' personal experiences and perception of those experiences. RESULTS: Participants encountered several barriers to their recovery; however, they were resilient and initiated ways to overcome these barriers and assist with their recovery. Facilitators of recovery experienced by survivors included seeking support from family and friends, lifestyle adaptations, and creative management of their multiple medical needs. Barriers included unmet needs experienced by survivors such as mental health issues, coordination of care, and spiritual needs. These unmet needs left participants feeling unsupported from healthcare providers during their recovery. CONCLUSION: This study highlights important barriers and facilitators experienced by critical illness survivors during recovery that need be addressed by healthcare providers. New ways to support critical illness survivors, that can reach a broader population, must be developed and evaluated to support survivors during their recovery in the community. IMPACT: This study addressed ICU survivors' barriers and facilitators to recovery. Participants encountered several barriers to recovery at home, such as physical, cognitive, psychosocial, financial, and transportation barriers, however, these survivors were also resilient and resourceful in the development of strategies to try to manage their recovery at home. These results will help healthcare providers develop interventions to better support ICU survivors in the community.

Nursing Research Priorities in Critical Care, Pulmonary, and Sleep: International Delphi Survey of Nurses, Patients, and Caregivers.

The objective of this workshop was to determine current nursing research priorities in critical care, adult pulmonary, and sleep conditions through input from consumer (patient, family, and formal and informal caregivers) and nursing experts around the world. Working groups composed of nurses and patients selected potential research priorities based on patient insight and a literature review of patient-reported outcomes, patient-reported experiences, and processes and clinical outcomes in the focal areas. A Delphi consensus approach, using a qualitative survey method to elicit expert opinion from nurses and consumers was conducted. Two rounds of online surveys available in English, Spanish, and Chinese were completed. A 75% or greater threshold for endorsement (combined responses from nursing and consumer participants) was determined a priori to retain survey items. A total of 837 participants (649 nurses and 188 patients, family, and/or caregivers) from 45 countries responded. Survey data were analyzed and nursing research priorities that comprise 23 critical care, 45 adult pulmonary, and 16 sleep items were identified. This project was successful in engaging a wide variety of nursing and consumer experts, applying a patient-reported outcome/patient-reported experience framework for organizing and understanding research priorities. The project outcome was a research agenda to inform, guide, and aid nurse scientists, educators, and providers, and to advise agencies that provide research and program funding in these fields.

Advance directives and intensity of care delivered to hospitalized older adults at the end-of-life.

BACKGROUND: Older adults prefer comfort over life-sustaining care. Decreased intensity of care is associated with improved quality of life at the end-of-life (EOL). OBJECTIVES: This study explored the association between advance directives (ADs) and intensity of care in the acute care setting at the EOL for older adults. METHODS: A retrospective, correlational study of older adult decedents (N = 496) was conducted at an academic medical center. Regression analyses explored the association between ADs and intensity of care. RESULTS: Advance directives were not independently predictive of aggressive care but were independently associated with referrals to palliative care and hospice; however, effect sizes were small, and the timing of referrals was late. CONCLUSION: The ineffectiveness of ADs to reduce aggressive care or promote timely referrals to palliative and hospice services, emphasizes persistent inadequacies related to EOL care. Research is needed to understand if this failure is provider-driven or a flaw in the documents themselves.

Nurses' Attitudes and Practices Related to Sedation: A National Survey.

BACKGROUND: Nurses are fundamental to the implementation of sedation protocols for patients receiving mechanical ventilation. A 2005 survey showed that nurses' attitudes toward sedation affected their sedation practices. Since then, updated guidelines on managing pain, agitation, and delirium have been published. OBJECTIVE: To explore nurses' self-reported attitudes and practices related to sedation and determine whether they have changed in the past decade. METHODS: Members of the American Association of Critical-Care Nurses were invited to complete the Nurse Sedation Practices Scale, which measures nurses' self-reported sedation practices and factors that affect them. Item and subscale responses were analyzed, and differences in item responses by respondent characteristics were determined. RESULTS: Respondents (N = 177) were mostly staff nurses (68%) with a bachelor's degree in nursing (63%). Nurses' attitudes toward the effectiveness of sedation in relieving patients' distress during mechanical ventilation correlated positively with their intention to administer sedatives (r s = 0.65). Sixty-six percent of nurses agreed that sedation was necessary for patients' comfort, and 34% agreed that limiting patients' recall was a desired outcome of sedation. Respondents with more experience or CCRN certification had a less positive evaluation of the effectiveness of sedation in minimizing distress. CONCLUSIONS: Nurses' attitudes toward sedating patients receiving mechanical ventilation have shifted in the past decade, with fewer nurses now believing that all patients should be sedated. However, more than half of nurses still agree that sedation is needed for patients' comfort, highlighting the need to consider nurses' attitudes when seeking to optimize sedation practices during mechanical ventilation.