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1.
Fam Syst Health ; 2024 Jan 22.
Article in English | MEDLINE | ID: mdl-38252114

ABSTRACT

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).

2.
J Adv Nurs ; 80(2): 446-464, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37614057

ABSTRACT

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.


Subject(s)
Caregivers , Family , Pediatrics , Child , Humans
3.
BMJ Support Palliat Care ; 13(e3): e676-e685, 2024 Jan 08.
Article in English | MEDLINE | ID: mdl-37604657

ABSTRACT

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.


Subject(s)
Caregivers , Neoplasms , Humans , Emotions , Neoplasms/therapy , Palliative Care , Stress, Psychological/therapy
4.
Bone Marrow Transplant ; 58(12): 1314-1321, 2023 12.
Article in English | MEDLINE | ID: mdl-37634015

ABSTRACT

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.


Subject(s)
Caregivers , Hematopoietic Stem Cell Transplantation , Adult , Humans , Child , Surveys and Questionnaires , Hematopoietic Stem Cell Transplantation/psychology
5.
J Fam Nurs ; 29(3): 227-247, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37191306

ABSTRACT

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.


Subject(s)
Caregivers , Hematopoietic Stem Cell Transplantation , Humans , Feasibility Studies , Intensive Care Units , Research Design , Hematopoietic Stem Cell Transplantation/adverse effects , Hematopoietic Stem Cell Transplantation/methods
6.
SAGE Open Nurs ; 9: 23779608231165688, 2023.
Article in English | MEDLINE | ID: mdl-37008557

ABSTRACT

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.

7.
Ann Am Thorac Soc ; 20(4): 491-498, 2023 04.
Article in English | MEDLINE | ID: mdl-37000144

ABSTRACT

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.


Subject(s)
Critical Care , Respiration, Artificial , Adult , Humans , United States , Respiration, Artificial/adverse effects , Symptom Assessment , Societies , Anxiety/diagnosis , Anxiety/etiology , Intensive Care Units
8.
Intensive Crit Care Nurs ; 76: 103388, 2023 Jun.
Article in English | MEDLINE | ID: mdl-36848704

ABSTRACT

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.


Subject(s)
COVID-19 , Nurses , Humans , United States , Pandemics , Qualitative Research , Critical Care
9.
Am J Infect Control ; 51(8): 890-894, 2023 08.
Article in English | MEDLINE | ID: mdl-36473616

ABSTRACT

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.


Subject(s)
Burnout, Professional , COVID-19 , Humans , Female , Pandemics/prevention & control , Health Personnel , Burnout, Professional/prevention & control , Anxiety
10.
Nurs Crit Care ; 28(6): 1031-1044, 2023 11.
Article in English | MEDLINE | ID: mdl-35831205

ABSTRACT

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.


Subject(s)
Critical Care , Nurses , Adult , Humans , Cross-Sectional Studies , Intensive Care Units , Internationality
11.
Dimens Crit Care Nurs ; 41(6): 340-346, 2022.
Article in English | MEDLINE | ID: mdl-36179313

ABSTRACT

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.


Subject(s)
Respiration, Artificial , User-Centered Design , Communication , Humans , Middle Aged , Pilot Projects , User-Computer Interface
12.
Front Immunol ; 13: 877558, 2022.
Article in English | MEDLINE | ID: mdl-35865530

ABSTRACT

A growing body of literature has emphasized the importance of biobehavioral processes - defined as the interaction of behavior, psychology, socioenvironmental factors, and biological processes - for clinical outcomes among transplantation and cellular therapy (TCT) patients. TCT recipients are especially vulnerable to distress associated with pandemic conditions and represent a notably immunocompromised group at greater risk for SARS-CoV-2 infection with substantially worse outcomes. The summation of both the immunologic and psychologic vulnerability of TCT patients renders them particularly susceptible to adverse biobehavioral sequelae associated with the Covid-19 pandemic. Stress and adverse psychosocial factors alter neural and endocrine pathways through sympathetic nervous system and hypothalamic-pituitary-adrenal axis signaling that ultimately affect gene regulation in immune cells. Reciprocally, global inflammation and immune dysregulation related to TCT contribute to dysregulation of neuroendocrine and central nervous system function, resulting in the symptom profile of depression, fatigue, sleep disturbance, and cognitive dysfunction. In this article, we draw upon literature on immunology, psychology, neuroscience, hematology and oncology, Covid-19 pathophysiology, and TCT processes to discuss how they may intersect to influence TCT outcomes, with the goal of providing an overview of the significance of biobehavioral factors in understanding the relationship between Covid-19 and TCT, now and for the future. We discuss the roles of depression, anxiety, fatigue, sleep, social isolation and loneliness, and neurocognitive impairment, as well as specific implications for sub-populations of interest, including pediatrics, caregivers, and TCT donors. Finally, we address protective psychological processes that may optimize biobehavioral outcomes affected by Covid-19.


Subject(s)
COVID-19 , Hypothalamo-Hypophyseal System , Child , Fatigue , Humans , Pandemics , Pituitary-Adrenal System , SARS-CoV-2
13.
Ann Am Thorac Soc ; 19(11): 1881-1891, 2022 11.
Article in English | MEDLINE | ID: mdl-35649201

ABSTRACT

Rationale: There has been a paradigm shift to partner with family caregivers by actively involving them in the direct care of the patient throughout the critical illness trajectory. Before effectively engaging family members in patient care, clinicians must assess characteristics and circumstances that may affect caregiver readiness to assume a caregiving role in the intensive care unit (ICU). Objectives: To determine how demographic, clinical, and psychological factors are related to characteristics of family caregiver readiness to engage in ICU patient care. Methods: A convenience sample of ICU family caregivers of both adult and pediatric patients in the ICU was recruited for this cross-sectional study. Participants completed the following measures: PROMIS-29 (Patient-Reported Outcomes Measurement and Information System); HADS (Hospital Anxiety and Depression Scale); CaSES (Caregiver Self-Efficacy Scale); Prep Scale (Preparedness for Caregiving Scale); Patient Activation Measure for Caregivers; and FCMFHS (Family Caregiver's Motives for Helping Scale). Data were collected via self-report at a single time point while the caregiver was visiting the critically ill patient in the ICU. Data analysis consisted of descriptive statistics and bivariate correlations. Results: Caregivers (N = 127) were primarily White (82.7%), females (77.2%), with a mean age of 51.8 (standard deviation [SD], 15.6). Most were either spouses (37.8%) or parents (32.3%) of the patient in the ICU. Patients were primarily adult (76.4%) with a mean APACHE (Acute Physiology, Age, Chronic Health Evaluation) III of 45.9 (SD, 22.5). There were significant (P < 0.05) negative correlations between depression, anxiety, and fatigue and all subscales of self-efficacy (resilience r = -0.18 to -0.30; self-maintenance r = -0.44 to -0.63; emotional connectivity r = -0.27 to -0.41; instrumental giving r = -0.34 to -0.46). Caregiver depression was negatively correlated with caregiver activation (r = -0.199) and caregiver preparedness (r = -0.300). Social satisfaction was positively correlated (P < 0.05) with caregiving preparedness, motivation, and all subscales of self-efficacy (preparedness r = 0.19; motivation r = 0.24; resilience r = 0.21; self-maintenance r = 0.49; emotional connectivity r = 0.29; instrumental giving r = 0.36). Conclusions: We found that caregiver symptoms of depression, anxiety, and fatigue are inversely related to caregiver preparation, motivation, and self-efficacy. To develop effective interventions for ICU family caregivers, further research is needed to understand the relationship between caregiver well-being, caregiving readiness, and caregiver involvement in patient care.


Subject(s)
Caregivers , Intensive Care Units , Adult , Female , Humans , Child , Middle Aged , Caregivers/psychology , Cross-Sectional Studies , Family , Critical Illness , Demography , Fatigue , Stress, Psychological
14.
Crit Care Nurs Clin North Am ; 34(1): 31-55, 2022 Mar.
Article in English | MEDLINE | ID: mdl-35210024

ABSTRACT

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.


Subject(s)
Family , Neoplasms , Adolescent , Child , Communication , Health Personnel , Humans , Intensive Care Units , Patient Care Team , Young Adult
15.
Psychooncology ; 31(6): 1031-1040, 2022 06.
Article in English | MEDLINE | ID: mdl-35102653

ABSTRACT

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.


Subject(s)
COVID-19 , Neoplasms , COVID-19/epidemiology , Humans , Neoplasms/psychology , Pandemics , Psycho-Oncology , Surveys and Questionnaires , United States
16.
Nurs Crit Care ; 27(3): 296-325, 2022 05.
Article in English | MEDLINE | ID: mdl-33089659

ABSTRACT

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.


Subject(s)
Anxiety , Family , Adult , Anxiety/prevention & control , Child , Humans , Infant, Newborn , Intensive Care Units, Neonatal
17.
J Fam Nurs ; 28(2): 151-171, 2022 05.
Article in English | MEDLINE | ID: mdl-34605283

ABSTRACT

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.


Subject(s)
Family , Professional-Family Relations , Child , Health Personnel , Humans , Nurse-Patient Relations , Patients
18.
West J Nurs Res ; 44(3): 214-226, 2022 03.
Article in English | MEDLINE | ID: mdl-34904483

ABSTRACT

Guided by Individual and Family Self-Management Theory, the purpose of this cross-sectional study was to describe patient care activities that family caregivers endorsed and performed while visiting their family member in the ICU. We found that caregivers wanted to be involved in ICU patient care and had preferences for the care they wanted to perform with their critically ill family member. More than 80% preferred to perform tasks related to daily grooming, communication, and education. Of note, many caregivers expressed interest in holistic healing activities (i.e., music and art), and yet, less than 50% of caregivers reported participating in these activities. The discrepancy between the number of care activities that respondents desired to perform compared to the number of care activities they reported performing represents an important opportunity to shift research and practice improvement efforts toward more tailored family engagement interventions and recognition of family caregivers as essential partners in care.


Subject(s)
Caregivers , Family , Cross-Sectional Studies , Humans , Intensive Care Units , Patient Care
19.
Dimens Crit Care Nurs ; 40(1): 51-58, 2021.
Article in English | MEDLINE | ID: mdl-33560635

ABSTRACT

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.


Subject(s)
Palliative Care , Quality of Life , Critical Care , Humans , Intensive Care Units , Referral and Consultation
20.
Crit Care Nurse ; 40(6): 42-51, 2020 Dec 01.
Article in English | MEDLINE | ID: mdl-33257964

ABSTRACT

BACKGROUND: Organizations motivated to provide high-quality care in the intensive care unit are exploring strategies to engage families in patient care. Such initiatives are based on emerging evidence that family engagement improves quality and safety of care. OBJECTIVE: To gather family feedback to guide future nurse-led quality improvement efforts to engage families in the intensive care unit setting. METHODS: The Critical Care Family Satisfaction Survey, which consists of 20 items rated from 1 (very dissatisfied) to 5 (very satisfied), was paired with open-ended questions and administered to families during the intensive care unit stay from March through December 2017. Content analysis was used to identify themes regarding the family experience. RESULTS: Responses were collected from 178 family members. The mean (SD) score on the survey was 4.65 (0.33). Five themes emerged regarding the delivery of family care in the intensive care unit: family interactions with the interdisciplinary team, information sharing and effective communication, family navigation of the intensive care unit environment, family engagement in the intensive care unit, and quality of patient care. CONCLUSIONS: This quality improvement project provided foundational information to guide family engagement efforts in the intensive care unit. Real-time solicitation of feedback is essential to improving the family experience and guiding family-centered care delivery in this practice environment.


Subject(s)
Critical Care , Intensive Care Units , Family , Feedback , Humans , Surveys and Questionnaires
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