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).

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.

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.

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.

Biobehavioral Implications of Covid-19 for Transplantation and Cellular Therapy Recipients.

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.

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.

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.

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.

Evaluating the Outcomes of an Organizational Initiative to Expand End-of-Life Resources in Intensive Care Units With Palliative Support Tools and Floating Hospice.

BACKGROUND: There is evidence that palliative care and floating (inpatient) hospice can improve end-of-life experiences for patients and their families in the intensive care unit (ICU). However, both palliative care and hospice remain underutilized in the ICU setting. OBJECTIVES: This study examined palliative consultations and floating hospice referrals for ICU patients during a phased launch of floating hospice, 2 palliative order sets, and general education to support implementation of palliative care guidelines. METHODS: This descriptive, retrospective study was conducted at a level I trauma and academic medical center. Electronic medical records of 400 ICU patients who died in the hospital were randomly selected. These electronic medical records were reviewed to determine if patients received a palliative consult and/or a floating hospice referral, as well as whether the new palliative support tools were used during the course of care. The numbers of floating hospice referrals and palliative consults were measured over time. RESULTS: Although not significant, palliative consults increased over time (P = .055). After the initial introduction of floating hospice, 27% of the patients received referrals; however, referrals did not significantly increase over time (P = .807). Of the 68 patients who received a floating hospice referral (24%), only 38 were discharged to floating hospice. There was a trend toward earlier palliative care consults, although this was not statistically significant (P = .285). CONCLUSION: This study provided the organization with vital information about their initiative to expand end-of-life resources. Utilization and timing of palliative consults and floating hospice referrals were lower and later than expected, highlighting the importance of developing purposeful strategies beyond education to address ICU cultural and structural barriers.