Family engagement in paediatric acute care settings: A realist review.

AIM: To create a programme theory of family engagement in paediatric acute care to explicate the relationships between contexts and mechanisms of family engagement that align with family, direct care providers and healthcare organization outcomes. DESIGN: Realist review and synthesis. DATA SOURCES: PubMed, CINAHL, PsycINFO and Web of Science searches for the 2.5-year period (July 2019-December 2021) following our 2021 scoping review. REVIEW METHODS: Following methods described by Pawson and Rycroft-Malone, we defined the scope of the review, searched for and appraised the evidence, extracted and synthesized study findings and developed a supporting narrative of our results. RESULTS: Of 316 initial citations, 101 were included in our synthesis of the final programme theory. Contexts included family and direct care provider individualism, and the organizational care philosophy and environment. Mechanisms were family presence, family enactment of a role in the child's care, direct care providers facilitating a family role in the child's care, unit/organizational promotion of a family role, relationship building and mutually beneficial partnerships. Outcomes were largely family-focussed, with a paucity of organizational outcomes studied. We identified four context-mechanism-outcome configurations. CONCLUSION: This realist review uncovered underlying contexts and mechanisms between patients, direct care providers and organizations in the family engagement process and key components of a mutually beneficial partnership. Given that successful family engagement requires direct care provider and organizational support, future research should expand beyond family outcomes to include direct care providers, particularly nurses and healthcare organization outcomes. IMPACT: The final programme theory of family engagement in paediatric acute care provides a roadmap for clinicians to develop complex interventions to engage families and evaluate their impact. The components of our final programme theory reflect family engagement concepts that have been evolving for decades. PATIENT OR PUBLIC CONTRIBUTION: The team conducting this review included members from the practice setting (JT & KG). In the future, as we and others use this model in practice, we will seek input for refinement from clinicians, patients and caregivers.

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.

Factors influencing critical care nurses' family engagement practices: An international perspective.

BACKGROUND: Family engagement positively impacts patient and family members' experiences of care and health outcomes. While partnering with families denotes best practice in intensive care units (ICUs), its full adoption requires improvement. A better understanding of the factors that influence the implementation of family engagement practices is necessary. AIM: To investigate the factors that enable or hinder adult ICU nurse-family engagement and to explore potential international variations. STUDY DESIGN: Descriptive, cross-sectional survey. Nurses from 10 countries completed the 'Questionnaire on Factors that Influence Family Engagement' (QFIFE), including five open-ended questions. We performed descriptive statistics on quantitative data and content analysis for open-ended questions, and then integrated the findings according to influencing factors and geographical patterns. This was part of a larger qualitative study where 65 nurses participated from adult intensive care units. RESULTS: Sixty-one nurses completed the questionnaire, making a response rate of 94%. Overall, patient acuity (Md = 5.0) and nurses' attitudes (Md = 4.6) seemed to be the most influential facilitator, followed by nurse workflow (Md = 4.0) and ICU environment (Md = 3.1) (score 1-6 most influential). The open-ended question data showed a more nuanced picture of the complexity of family engagement in care around these four determinants. Adding a fifth determinant, namely Families are complex structures that respond uniquely to the ICU and patient, revealed that difficult family dynamics, miscommunication and family having difficulty in understanding the situation or health literacy, hindered family engagement. Exploring geographical variations, Africa/Middle East consistently differed from others on three of the four QFIFE subscales, showing lower median levels. CONCLUSIONS: Some determinants are perceived to be more influential than others, becoming barriers or enablers to nurse-family engagement in adult ICU. Research that investigates contextual determinants and which compares implementation and improvement initiatives tailored to address family engagement practices barriers and enablers are needed. RELEVANCE TO CLINICAL PRACTICE: Knowledge of this international study expands our understanding of enablers and barriers in family engagement that may inform family engagement practice improvement efforts around the world.

Impact of the COVID-19 pandemic on cancer patients and psycho-oncology providers: Perspectives, observations, and experiences of the American Psychosocial Oncology Society membership.

OBJECTIVE: To understand: (1) psycho-oncology providers' perspectives on and observations of the psychological responses of their cancer patients during the pandemic, and (2) psycho-oncology providers' own experiences delivering care. METHODS: In this concurrent mixed methods study, a survey was distributed to psychosocial providers who were members of the American Psychosocial Oncology Society (APOS). Survey respondents were invited to participate in a one-on-one audio-recorded interview via phone or secure Zoom®. RESULTS: seventy-six self-identified psycho-oncology providers responded to the survey and 11 participated in a one-on-one interview. Approximately half reported that patients responded in unique ways to COVID-19 stress relative to other populations. Three themes emerged from qualitative analyses: (1) unique burden on patients, (2) cancer patients' pandemic response and its relationship to their cancer experience, and (3) unexpected positive changes. Providers emphasized that the cancer experience may have prepared patients for the existential distress of the pandemic and described patients' resiliency. Two themes emerged regarding delivery of care: (1) new professional and personal challenges and (2) provider resiliency. CONCLUSIONS: Although providers observed that the pandemic placed new burdens on patients, they emphasized that the cancer experience may have prepared patients for the existential distress of the pandemic and described patients' resiliency. To overcome challenges, psycho-oncology providers used innovative strategies to support patients and foster their own mental health.

Engagement of Families in the Care of Hospitalized Pediatric Patients: A Scoping Review.

This scoping review was conducted to examine the range, nature, and extent of the published family engagement literature specific to the pediatric acute care setting to highlight future research and practice development opportunities. Included studies (N = 247) revealed global relevance. Engagement strategies ranged from more passive such as allowing/encouraging families to be present at the bedside to more active strategies aimed at promoting mutual and reciprocal nurse-patient interactions. Family engagement is distinguished by a mutually beneficial partnership of families with health care team members and care organizations. Future research in the area of family engagement in pediatric nursing should focus on determining the core engaging health professional behaviors and engaged parent outcomes; extending the knowledge base related to mutually beneficial partnerships between families and health care teams; developing effectiveness studies to determine the optimal engaging actions by teams to achieve parent engagement; and measuring the influence of engagement on parent and infant/child outcomes.

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.

Giving nurses a voice during ethical conflict in the ICU.

BACKGROUND: Ethical conflict and subsequent nurse moral distress and burnout are common in the intensive care unit. There is a gap in our understanding of nurses' perceptions of how organizational resources support them in addressing ethical conflict in the intensive care unit. RESEARCH QUESTION/OBJECTIVES/METHODS: The aim of this qualitative, descriptive study was to explore how nurses experience ethical conflict and use organizational resources to support them as they address ethical conflict in their practice. PARTICIPANTS AND RESEARCH CONTEXT: Responses to two open-ended questions were collected from critical care nurses working in five intensive care units at a large, academic medical center in the Midwestern region of the United States. ETHICAL CONSIDERATIONS: This study was approved by the Institutional Review Board at the organization where the study took place. FINDINGS: Three main interwoven themes emerged: nurses perceive (1) intensive care unit culture, practices, and organizational priorities contribute to patient suffering; (2) nurses are marginalized during ethical conflict in the intensive care unit; and (3) organizational resources have the potential to reduce nurse moral distress. Nurses identified ethics education, interprofessional dialogue, and greater involvement of nurses as important strategies to improve the management of ethical conflict. DISCUSSION: Ethical conflict related to healthcare system challenges is intrinsic in the daily practice of critical care nurses. Nurses want to be engaged in discussions about their perspectives on ethical conflict and play an active role in addressing ethical conflict in their practice. Organizational resources that support nurses are vital to the resolution of ethical conflict. CONCLUSION: These findings can inform the development of interventions that aim to proactively and comprehensively address ethical conflict in the intensive care unit to reduce nurse moral distress and improve the delivery of patient and family care.

A Theoretical Lens Through Which to View the Facilitators and Disruptors of Nurse-Promoted Engagement With Families in the ICU.

The theory of nurse-promoted engagement with families in the intensive care unit (ICU) was developed to describe the dynamic and complex interplay between factors that support or impair nurses' efforts to promote family engagement. Theory construction involved theory derivation and theory synthesis. Concepts and relationships from ecological theory, the Resiliency Model of Family Stress, Adjustment and Adaptation, moral distress theory, and the healthy work environment framework informed the initial formation of the emerging theory. The synthesis of findings from the literature further expanded the scope of the relationships and propositions proposed in the theory. This middle-range theory can set direction for theory-informed focused nursing research that can advance the science of family nursing and guide ICU clinicians in overcoming challenges in family nursing practice. Recommendations are provided for applying this new theoretical lens to guide family nursing curriculum development, practice improvements, and policy changes to support nurses in promoting family engagement.

Relationships among Climate of Care, Nursing Family Care and Family Well-being in ICUs.

BACKGROUND: Frequent exposure to ethical conflict and a perceived lack of organizational support to address ethical conflict may negatively influence nursing family care in the intensive care unit. RESEARCH AIMS: The specific aims of this study were to determine: (1) if intensive care unit climate of care variables (ethical conflict, organizational resources for ethical conflict, and nurse burnout) were predictive of nursing family care and family wellbeing and (2) direct and indirect effects of the climate of care on the quality of nursing family care and family wellbeing. RESEARCH DESIGN: A cross-sectional, correlational design was used. PARTICIPANTS AND RESEARCH CONTEXT: Convenience sample of 111 nurses and 44 family members from five intensive care units at a Midwest hospital in the United States. INSTRUMENTS: The Ethical Conflict Questionnaire-Critical Care Version, Maslach Burnout Inventory-Human Services Survey and Hospital Ethical Climate Scale were used to measure climate of care. The Family-Centered Care-Adult Version and Nurse Provided Family Social Support Scale were family measures of the quality of nursing family care. The Family Wellbeing Index was used to measure family wellbeing. DATA ANALYSIS: Hierarchical regression and mediation analysis were used to answer the study aims. ETHICAL CONSIDERATIONS: The study was approved by the Institutional Review Board at the study site. FINDINGS: In separate regression models, organizational resources for ethical conflict (ß = .401, p = .006) and depersonalization (ß = -.511, p = .006), a component of burnout, were significant predictors of family-centered care. In simple mediation analysis the relationship between organizational resources for ethical conflict and family-centered care was mediated by depersonalization (ß = .341, 95% confidence interval (.015, .707)). DISCUSSION: Inadequate organizational resources and depersonalization may be related to family care delivery, and present obstacles to family-centered care in the intensive care unit. CONCLUSION: Further research to explicate the relationships among organizational resources, ethical conflict, burnout, and family-centered care is needed to guide the development of effective interventions that enhance the quality of nursing family care in the intensive care unit.

Family Presence During Resuscitation After Trauma.

The purpose of this study was to examine the effects of family presence during resuscitation (FPDR) in patients who survived trauma from motor vehicle crashes (MVC) and gunshot wounds (GSW). A convenience sample of family members participated within three days of admission to critical care. Family members of 140 trauma patients (MVC n = 110, 79%; GSW n = 30, 21%) participated. Family members ranged in age from 20-84 years (M = 46, SD = 15, Mdn = 47). The majority were female (n = 112, 80%) and related to the patient as spouse (n = 46, 33%). Participating in the FPDR option reduced anxiety (t = -2.43, p =.04), reduced stress (t = -2.86, p = .005), and fostered well-being (t = 3.46, p = .001). Results demonstrate the positive initial effects of FPDR on family members of patients surviving trauma injury.

Family-focused practice and policy recommendations to improve the inpatient experience for patients undergoing a stem cell transplant.

INTRODUCTION: Hematopoietic stem cell transplantation (HCT) greatly impacts the social, emotional, and physical well-being of the patient and their family. The transplant process imposes significant lifestyle restrictions that result in patient and family isolation, which has been further amplified during the COVID-19 pandemic era. While hospital systems recognize the importance of family engagement, the pandemic underscored the need to translate this philosophy more fully into practice. METHOD: We discuss the importance of engaging the family throughout the transplant experience to improve patient outcomes and overall family health and well-being. RESULTS: We present the HCT family resilience model, a synthesis of multiple family and nursing theories and HCT concepts to better guide HCT family care. The theories and frameworks that inform our model address family functioning and growth in times of stress, coping strategies that promote positive family outcomes and resilience, and multicultural factors that may affect family experiences. A key contribution of our model is highlighting the role of family engagement in improving HCT family outcomes. DISCUSSION: Application of a family systems lens highlights the essential role families play in the care of HCT patients and can foster family well-being. We offer the HCT family resilience conceptual model as a guide for practice and policy improvements to optimize care delivery for this patient and family population, as well as direction for future research. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

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

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

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.

Delirium in the US: Results from 2023 cross-sectional World Delirium Awareness Day prevalence study.

IMPORTANCE: Delirium is an acute brain dysfunction associated with an increased risk of mortality and future dementia. OBJECTIVES: To describe the prevalence of clinically documented delirium in the United States on World Delirium Awareness Day 2023. DESIGN: Sub-analysis of a prospective, cross-sectional, online, international survey. SETTING: All healthcare settings were eligible with the exception of operating rooms and outpatient clinics. PARTICIPANTS: Healthcare clinicians, administrators, and researchers completed the survey. MAIN OUTCOME AND MEASURE: Prevalence of clinically documented delirium at 8:00 a.m. and 8:00 p.m. on March 15, 2023. Secondary outcomes were related to healthcare delivery. Descriptive statistics are reported. Differences between unit types (non-ICU vs ICU) were examined for all outcomes. RESULTS: Ninety-one hospital units reported on 1,318/1,213 patients. The prevalence of clinically documented delirium was 16.4% (n=216/1,318) at 8:00 a.m., 17.9% (n=217/1,213) at 8:00 p.m. (p= 0.316) and significantly differed between age groups, reported discipline, unit, and hospital types. Significant differences were identified between non-ICU and ICU settings in the use of delirium-related protocols, non-pharmacologic and pharmacologic management, educational processes, and barriers to evidence-based delirium care. CONCLUSION: To our knowledge, this is the first epidemiologic survey of clinically documented delirium across two time points in the U.S.. Delirium remains a significant burden and challenge for healthcare systems. The high percentage of units using delirium management protocols suggests administrator and clinician awareness of evidence-based strategies for its detection and mitigation. We provide recommendations for future studies and quality improvement projects to improve clinical recognition and management of delirium.

Experiences of families when present during resuscitation in the emergency department after trauma.

Several organizations have published national guidelines on providing the option of family presence during resuscitation (FPDR). Although FPDR is being offered in clinical practice, there is limited description of family experiences after FPDR. The aim of this study was to describe family experiences of the FPDR option after trauma from motor vehicle crashes and gunshot wounds. A descriptive, qualitative design based on content analysis was used to describe family experiences of the FPDR option. Family members (N = 28) were recruited from a major level 1 adult trauma center in the Midwest. Participants in this study were 1 family member per patient who were 18 years or older, visited the patient in the surgical intensive care unit, spoke and understood English, and had only one critically injured patient in the family. Family interview data on experiences during FPDR after trauma were used to identify themes. Two main categories were found. Families view the role of health care professionals (HCPs) to "fix" the patient, whereas they as family members have an important role to protect and support the patient. Subcategories related to the role of the HCP include the following: multiple people treating the patient, completion of many tasks with "assessment of the damages," and professionalism/teamwork. Important subcategories related to the family member role include the following: providing information to the HCP, ensuring that the medical team is doing its job, and remaining close to provide physical and emotional comfort to the patient. Health care professionals are viewed positively by the family, and the role of the family is viewed as important. Families wanted to be present and would recommend the choice to other family members. The findings of this study support that the FPDR option is an intervention that helps family members build trust in HCPs, fulfills informational needs, allows family members to gain close proximity to the patient, and support their family member emotionally.

An unheard voice: infection prevention professionals reflect on their experiences during the covid-19 pandemic.

BACKGROUND: The COVID-19 pandemic required a shift away from the evidence-based practices known to infection prevention professionals' (IPP). Relaying these guidelines to beleaguered front line staff contributed to the experience of moral distress and burnout among IPPs. METHODS: A mixed methods design was used to explore the experiences of IPPs during the COVID-19 pandemic. An electronic survey was sent to a convenience sample from the Wisconsin APIC membership. A subset of this sample completed additional semi-structured interviews. RESULTS: A total of 61 IPPs responded to the survey, 18 agreed to interviews with 11 completions. Most respondents identified as female (n=58, 95.0%) and White (n=55, 90.1%). More than half of the respondents (n=39, 63.9 %) reported they experienced moral distress (MD). Themes from one-on-one interviews included: Feeling depleted, challenges to IPP role, validation of IPP expertise, value of peer support. CONCLUSIONS: We found that IPPs endured significant distress and exhaustion during the COVID-19 pandemic regardless of their practice setting. The long-term effects on the IPP profession must be examined. IPPs are susceptible to high levels of stress and anxiety similar to other frontline healthcare workers. IPPs deserve recognition for their service during the pandemic and should have access to resources that can support their well-being.

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.

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

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