The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
Background: While grief research has focused on death-related losses and distressed outcomes, contemporary findings suggest that role losses can lead to grief, and growth can accompany grief. The current study aimed to replicate and extend the Papa, Lancaster, & Kahler, 2014 study by: (1) assessing common loss responses (prolonged grief, major depression, posttraumatic stress) and role centrality among bereaved, divorced, and unemployed individuals, and (2) exploring posttraumatic growth and stress appraisals among loss groups.
Method: A cross-sectional online survey was completed by 372 recently bereaved, divorced, and unemployed individuals. Exploratory factor analysis assessed common loss responses in the bereaved group. In the sample, multiple regressions assessed the relationship between role centrality, stress appraisals, and outcome variables (prolonged grief, posttraumatic growth); correlational analysis assessed the relationship between posttraumatic growth and psychopathology variables; qualitative analysis assessed examples of posttraumatic growth.
Results: A subset of each loss group reported prolonged grief and posttraumatic growth. Prolonged grief was a distinct factor from major depression and posttraumatic stress. Role centrality and stress appraisals were significantly associated with outcome variables. There was a weak, positive relationship between posttraumatic growth and psychopathology variables.
Limitations: Limitations included convenience sampling and a cross-sectional study design, which precluded assessing responses over time. Strengths included replicating existing literature and incorporating a strength-based measure.
Conclusions: Prolonged grief can emerge from death-related loss and role loss. Also, posttraumatic growth can accompany prolonged grief. In clinical practice, loss can be conceptualized broadly beyond bereavement and addressed with the potential for posttraumatic growth.
Purpose: This study aims to develop a scale to assess the stress of nurses caring for terminally ill children and to test the validity and reliability of the scale.
Background: Nurses caring for children experience various stressors that are different from those experienced by nurses caring for adult patients. It is important to understand the level of stress of nurses caring for dying children and their families. Instruments to measure these stress levels, however, are not available.
Design: This study used a methodological approach.
Method: The initial items were identified through literature reviews and in-depth interviews. Content validation of the items was evaluated by seven experts. Participants were 357 pediatric nurses working at 11 institutions in six cities. Data were analyzed using item analysis, exploratory and confirmatory factor analysis, internal consistency, and test–retest. This study followed the STROBE checklist.
Findings: The final scale consisted of 22 items chosen and classified into 5 factors (psychological difficulties, conflict with parents, difficulties in communication, lack of end-of-life care knowledge, and restricted working environment), which explained 61.13% of the total variance. The 5-subscale model was validated by confirmatory factor analysis. Cronbach's alpha for the total item was 0.90, and the intra-class correlation coefficient was 0.89.
Conclusion: This scale can be used to contribute toward the assessment of stress among nurses performing end-of-life care for children.
Practice implications: This scale will contribute to the improvement of the quality of life of not only nurses, but also children and their families in pediatric settings.
Background: Our objectives were to test whether during a potentially life-threatening medical emergency, perceived threat (a patient’s sense of life endangerment) in the emergency department (ED) is common and associated with the subsequent development of posttraumatic stress disorder (PTSD) symptoms.
Methods: This study was an ED-based prospective cohort study in an academic hospital. We included adult patients requiring acute intervention in the ED for resuscitation of a potentially life-threatening medical emergency, defined as respiratory or cardiovascular instability. We measured patient-perceived threat in the ED using a validated patient self-assessment measure (score range = 0 to 21, with higher scores indicating greater perceived threat). We performed blinded assessment of PTSD symptoms 30 days after discharge using the PTSD Checklist for Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (PCL-5).
Results: Ninety-nine of 113 (88%) patients completed follow-up, with 98% reporting some degree of perceived threat, median (interquartile range [IQR]) perceived threat score 12 (6 to 17), and 72% reported PTSD symptoms in relation to their ED visit (median [IQR] PC-5 score = 7 [0 to 30]). Patients with respiratory instability had higher median (IQR) perceived threat scores (16 [9 to 18] vs. 9 [6 to 14)] and PCL-5 scores (10 [2 to 40] vs. 3 [0 to 17]) compared to patients without respiratory instability. In a multivariable linear regression model adjusting for potential confounders, greater perceived threat in the ED was independently associated with higher PCL-5 scores (ß = 0.79, 95% confidence interval [CI] = 0.15 to 1.42). Among the individual perceived threat items, the feeling of helplessness during resuscitation had the strongest association with PCL-5 score (ß = 5.24, 95% CI = 2.29 to 8.18).
Conclusions: Perceived threat during potentially life-threatening emergencies is common and independently associated with development of PTSD symptoms. Additional research to test whether reduction of perceived threat in the ED attenuates the development of PTSD symptoms following potentially life-threatening emergencies is warranted.
Objectives: Palliative care workers have continuous exposure to the emotionally draining effects of pain, suffering, death, grief, and mourning. Burnout syndrome is common among these individuals who accompany patients on the way to death. This study evaluated burnout, stress, anxiety, and depression among care givers.
Methods: A total of 47 individuals working in palliative care units or internal disease and neurology clinics participated in the study. The participants were divided into 2 groups: palliative care workers (Group P) and workers in internal disease and neurology clinics (Group A). All of the participants completed the Maslach Burnout Inventory, the Beck anxiety and depression scales, and the Stress Appraisal Measure.
Results: A total of 47 healthcare workers agreed to complete the scales. Emotional burnout and desensitization scores were found to be elevated, and personal success scores were low in both groups. The Beck Anxiety Inventory revealed findings of moderate anxiety in both groups, while cognitive-sensorial, physiological, and pain complaints, as well as signs of stress, were more pronounced in Group A.
Conclusion: Burnout is a significant problem among healthcare workers and signs of stress and cognitive-sensorial, physiological, and pain complaints are particularly common among those working in palliative care units. Structural arrangements aimed at addressing the causes of burnout could positively affect the well-being of healthcare workers.
Objective: to explore self-perception competence among Spanish nurses dealing with patient death and its relationship with work environment, evidence-based practice, and occupational stress.
Method: a cross-sectional web-based survey collected information from a convenience sample of 534 nurses from professional Spanish Colleges who answered four validated questionnaires: Coping with Death Scale, Practice Environment Scale of the Nursing Work Index, Perception of Evidence-Based Practice (EBP) and Nursing Stress Scale.
Results: a total of 79% of the participants were women, the average age was 40 years old, 38% had a postgraduate degree and 77% worked in public health settings. Many nurses evaluated their work environment as unfavorable (66%), reported high occupational stress (83.5±14.9), and had high scores on knowledge/skills in EBP (47.9±11.3). However, 61.2% of them perceived an optimal coping (>157 score). The multivariate logistic model indicated positive associations with work environment and EBP characteristics (OR: 1.30, p=0.054; OR: 1.04, p=0.007; OR: 1.13, p<0.001, respectively) but negative associations with occupational stress and short work experience (OR: 0.98, p=0.0043; OR: 0.74, p<0.002, respectively). These factors explained 23.1% of the coping variance (p<0.001).
Conclusion: although most nurses perceived optimal coping, the situation could be enhanced by modifying several contextual factors. The identification of these factors would improve the quality of end-of-life care by facilitating nursing management.
The increasing number of cancer patients and prolonged periods of illness have led to an increase in nurses' stress and various other problems. This research aimed to identify the stress resulting from caring for cancer patients and the methods for coping with stress among cancer care nurses. The research subjects were 180 clinical nurses caring for cancer patients in a hospital in Korea. Stress caused by excessive workloads, inappropriate compensation, and interpersonal conflicts with physicians was high. There was a difference in stress according to age. Coping strategies differed according to religion, education, occupation, hospice education, job satisfaction, and leisure activities. The higher the stress, the greater the number of coping strategies used. Problem-related coping was associated with more diverse stressors. Stress characteristics differed according to various factors, whereas stress coping strategies depended on the stress characteristics of clinical nurses caring for cancer patients. Future research following a critical approach will be needed to elucidate the compassion fatigue related to the stress strategies of clinical nurses. These findings could contribute to the development of interventions to reduce stress in clinical nurses by providing evidence on the stress and coping methods of nurses who provide palliative care for cancer patients.
Working with terminally ill patients is regarded as a stressful or traumatic event and may lead to negative outcomes, including job burnout and secondary traumatic stress (STS). Psychological resilience might protect employees from the negative consequences of stress. The aim of this study was to determine the mediating role of job burnout in the relationship between psychological resilience and STS. The study included 72 nurses aged from 22 to 72 years old (M = 46.01, SD = 10.69), working with terminally ill patients. The recipients completed 3 questionnaires: the Secondary Traumatic Stress Scale, the Oldenburg Burnout Inventory, and the Resilience Measurement. The results reveal negative associations between resilience, job burnout, and secondary traumatic stress, and a positive correlation between secondary traumatic stress and job burnout. Mediation analysis showed that job burnout plays a mediating role in the relationship between psychological resilience and secondary traumatic stress. Our findings highlight the role played by job burnout in the manifestation of STS. Professional and nonprofessional interventions for individuals experiencing work-related traumatic stress would benefit from interventions that build personal resources.
Many studies have highlighted the deleterious psychological impact of suicide on bereaved individuals. We examined the psychological processes facilitating posttraumatic growth (PTG) among 124 suicide-loss survivors, focusing on attachment styles, perceived burdensomeness, and thwarted belongingness. Securely attached individuals achieved higher PTG than insecurely attached individuals. Perceived burdensomeness and thwarted belongingness both mediated and moderated the associations between attachment and PTG. Anxiously or avoidantly attached individuals who also had a high level of perceived burdensomeness were the least likely to achieve PTG. Thus, these individuals may derive particular benefit from attachment-based therapeutic interventions focusing on interpersonal relationships.
This study was designed to promote enhanced self-efficacy and decreased stress levels for family caregivers at a hospice care hospital, thus increasing their quality of life. This is achieved through group flower arranging sessions. The objectives are to (a) enhance self-efficacy scores for family caregivers of Calvary patients, (b) decrease stress levels for family caregivers of Calvary patients, and (c) disseminate results to other hospices. The results show that the flower arranging sessions resulted in significantly increased self-efficacy and decreased stress and associated problems for the caregiver participants. Implications and suggestions for future research are discussed.
Background: Critical illness increases the risk for poor mental health outcomes among both patients and their informal caregivers, especially their surrogate decision-makers. Surrogates who must make life-and-death medical decisions on behalf of incapacitated patients may experience additional distress. EMPOWER (Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience) is a novel cognitive-behavioral, acceptance-based intervention delivered in the intensive care unit (ICU) setting to surrogate decision-makers designed to improve both patients’ quality of life and death and dying as well as surrogates’ mental health.
Methods: Clinician stakeholder and surrogate participant feedback (n = 15), as well as results from an open trial (n = 10), will be used to refine the intervention, which will then be evaluated through a multisite randomized controlled trial (RCT) (n = 60) to examine clinical superiority to usual care. Feasibility, tolerability, and acceptability of the intervention will be evaluated through self-report assessments. Hierarchical linear modeling will be used to adjust for clustering within interventionists to determine the effect of EMPOWER on surrogate differences in the primary outcome, peritraumatic stress. Secondary outcomes will include symptoms of post-traumatic stress disorder, prolonged grief disorder, and experiential avoidance. Exploratory outcomes will include symptoms of anxiety, depression, and decision regret, all measured at 1 and 3 months from post-intervention assessment. Linear regression models will examine the effects of assignment to EMPOWER versus the enhanced usual care group on patient quality of life or quality of death and intensity of care the patient received during the indexed ICU stay assessed at the time of the post-intervention assessment. Participant exit interviews will be conducted at the 3-month assessment time point and will be analyzed using qualitative thematic data analysis methods.
Discussion: The EMPOWER study is unique in its application of evidence-based psychotherapy targeting peritraumatic stress to improve patient and caregiver outcomes in the setting of critical illness. The experimental intervention will be strengthened through the input of a variety of ICU stakeholders, including behavioral health clinicians, physicians, bereaved informal caregivers, and open trial participants. Results of the RCT will be submitted for publication in a peer-reviewed journal and serve as preliminary data for a larger, multisite RCT grant application.
Trial registration: ClinicalTrials.gov, NCT03276559. Retrospectively registered on 8 September 2017.
Background: The experience of financial stress during and after critical illness for patients and their family is poorly understood.
Objectives: Our objectives were to (1) explore common financial concerns, their contribution to emotional stress, and potential opportunities for interventions to reduce financial stress in patients with critical illness and their family members; and (2) confirm patient and family members' willingness to provide information on this topic.
Design: Cross-sectional survey study.
Setting/Subjects : Patients (18/24, response rate 75%) and their family members (32/58, response rate 55%) from two prior randomized trials at an urban, level 1 Trauma center.
Results: Ten (56%) patients and 19 (70%) family members reported financial worries during an intensive care unit (ICU) stay; 70% of both groups reported financial worries post-ICU discharge. Thirty percent (3/10) of patients and 43% (10/23) of family members who were not asked about financial concerns by hospital staff wished that they had been asked. Both patients and family believed that it would have been helpful to have information about insurance coverage, interpreting hospital bills, and estimated out-of-pocket costs. Among patients, 47% favored receiving these services after the ICU stay (7/15), while 20% (3/15) preferred these services in the ICU; 73% of family members preferred receiving them during the ICU stay (22/30), while 27% (8/30) preferred these services after the ICU stay.
Conclusion: Our findings suggest that the experience of financial stress and the worry it causes during and after critical illness are common and potentially modifiable with simple targeted interventions.
Background: Home care workers (HCWs)-including home health aides, personal care aides, and other direct care workers-provide functional and other essential support that allows older, disabled, and seriously ill people to live at home. As a growing number of patients are aging and dying at home, HCWs are increasingly providing care at the end of life (EOL). Although prior qualitative studies have shown that patient death is an impactful and challenging experience for HCWs, the majority of HCWs receive almost no training on EOL issues.
Objective: The goal of this scoping review is to identify intervention studies describing training of HCWs in EOL issues to map types of training and to assess the degree to which existing efforts address HCW health and well-being.
Design: Our scoping review covered three databases and focused on articles published in English since 2000.
Results: Of the 393 articles screened, 26 underwent full-text review and 6 met inclusion criteria. Only one article discussed training designed for and implemented with HCWs exclusively. Other trainings simultaneously targeted multiple kinds of workers. Supporting HCWs in reducing their stress and improving their coping skills was substantially addressed in only one article, although HCWs' emotional needs were addressed less centrally in several others.
Conclusion: Our findings suggest that there is a paucity of EOL training interventions tailored specifically to the experiences and positioning of HCWs. We recommend that future intervention studies address the multiple facets of HCWs' stress related to patient death to improve EOL care in the home.
PURPOSE OF REVIEW: Family caregivers of patients with cancer often spend a great deal of effort on physically and emotionally demanding work while taking care of patients. However, the majority of caregivers are not properly equipped for their role as caregivers, which may lead to increased distress in both caregivers and patients. Herein, we reviewed the recent literature (last 3 years) examining online interventions that seek to support caregiver resilience and decrease distress.
RECENT FINDINGS: Our search identified interventions involving three main themes: informational support, positive activities, and social support. These are mostly in the form of web-based tools and mobile apps targeting both usability and quality of life. Social network services are also considered in this review as a new environment for caregivers to connect with other individuals with lived experience in similar circumstances.
SUMMARY: Existing studies on online interventions to support caregivers is still at a formative development stage and pilot tests of feasibility, rather than a substantive body of randomized controlled trials to assess the impact in different user populations, or to determine specific factors that impact caregiver distress level or resilience. More research is needed to further assess the long-term effects of online interventions on caregiver stress and resilience. Also, the role of different types of social network services and new forms of interaction, such as conversational agents, has not yet been fully investigated in caregiver populations. Future research should strive to seek new modes of providing services that may present novel opportunities to enhance caregiver resilience and reduce distress.
BACKGROUND: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.
AIM: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient.
DESIGN/PARTICIPANTS: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support.
RESULTS: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support.
CONCLUSION: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.
Background: The “Promoting Resilience in Stress Management” intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
Aim: Utilizing data from a randomized clinical trial of Promoting Resilience in Stress Management versus Usual Care, we examined whether response to Promoting Resilience in Stress Management differed across key sociodemographic characteristics.
Design: Adolescents and young adults with cancer completed patient-reported outcome measures of resilience, hope, benefit-finding, quality of life, and distress at enrollment and 6 months. Participants were stratified by sex, age, race, and neighborhood socioeconomic disadvantage based on home address (Area Deprivation Index scores with 8–10 = most disadvantaged). Differences in the magnitude of effect sizes between stratification subgroups were noted using a conservative cutoff of d > 0.5.
Setting/participants: participants were 12 to 25 years old, English-speaking, and receiving cancer care at Seattle Children’s Hospital.
Results: In total, 92 adolescents and young adults (48 Promoting Resilience in Stress Management, 44 Usual Care) completed baseline measures. They were 43% female, 73% 12 to 17 years old, 64% White, and 24% most disadvantaged. Effect sizes stratified by sex, age, and race were in an expected positive direction and of similar magnitude for the majority of outcomes with some exceptions in magnitude of treatment effect. Those who lived in less disadvantaged neighborhoods benefited more from Promoting Resilience in Stress Management, and those living in most disadvantaged neighborhoods benefited less.
Conclusion: The “Promoting Resilience in Stress Management” intervention demonstrated a positive effect for the majority of outcomes regardless of sex, age, and race. It may not be as helpful for adolescents and young adults living in disadvantaged neighborhoods. Future studies must confirm its generalizability and integrate opportunities for improvement by targeting individual needs.
Stress is a commonly reported concern of individuals with chronical diseases, including multiple sclerosis (MS). This study sought to investigate the relationships between self-transcendence, death anxiety, and perceived stress among individuals with MS from Iran. A second aim of the study was to assess the buffering effect of self-transcendence in the relationship between death anxiety and perceived stress. Two hundred and fifteen participants with MS from four hospitals completed measures assessing self-transcendence, death anxiety, and perceived stress. Using structural equation modeling, death anxiety was found to be positively related to perceived stress. In addition, there was a negative relationship between self-transcendence and perceived stress. Results of the study suggest that self-transcendence is a buffer in the link between death anxiety and perceived stress for individuals with MS. The findings demonstrate the importance of self-transcendence in decreasing the effects of death anxiety on perceived stress and have clinical implications for health professionals.
The impact of traumatic workplace death on bereaved families, including their mental health and well-being, has rarely been systematically examined. This study aimed to document the rates and key correlates of probable posttraumatic stress disorder (PTSD), major depressive disorder (MDD), and prolonged grief disorder (PGD) in family members following a workplace injury fatality. The hidden nature of the target population necessitated outreach recruitment techniques, including the use of social media, newspaper articles, radio interviews, and contact with major family support organizations. Data were collected using a cross-sectional design and international online survey. The PCL-C (PTSD), the PHQ-8 (MDD), and PG-13 (PGD) were used to measure mental health disorders. All are well-established self-report measures with strong psychometric qualities. Participants were from Australia (62%), Canada (17%), the USA (16%), and the UK (5%). The majority were females (89.9%), reflecting the gender distribution of traumatic workplace deaths (over 90% of fatalities are male). Most were partners/spouses (38.5%) or parents (35%) and over half (64%) were next of kin to the deceased worker. Most deaths occurred in the industries that regularly account for more than 70 percent of all industrial deaths-construction, manufacturing, transport, and agriculture forestry and fishing. At a mean of 6.40 years (SD = 5.78) post-death, 61 percent of participants had probable PTSD, 44 percent had probable MDD, and 43 percent had probable PGD. Logistic regressions indicated that a longer time since the death reduced the risk of having each disorder. Being next of kin and having a self-reported mental health history increased the risk of having MDD. Of the related information and support variables, having satisfactory support from family, support from a person to help navigate the post-death formalities, and satisfactory information about the death were associated with a decreased risk of probable PTSD, MDD, and PGD, respectively. The findings highlight the potential magnitude of the problem and the need for satisfactory information and support for bereaved families.
Purpose: Prior latent class analyses (LCA) have focused on people who were bereaved more than 6 months earlier. Research has yet to examine patterns and correlates of emotional responses in the first few months of bereavement. We examined whether subgroups could be identified among very recently (= 6 months) bereaved adults, based on their endorsement of symptoms of prolonged grief disorder (PGD), posttraumatic stress disorder (PTSD), and depression. Associations of class membership with overall disturbed grief, PTSD, and depression—assessed concurrently and at 6 months follow-up—were examined. Furthermore, we examined differences between classes regarding socio-demographics, loss-related, and cognitive behavioural variables.
Methods: PGD, PTSD, and depression self-report data from 322 Dutch individuals bereaved = 6 months earlier were subjected to LCA; N = 159 completed the follow-up assessment. Correlates of class membership were examined.
Results: Three classes were identified: a low symptom class (N = 114; 35.4%), a predominantly PGD class (N = 96; 29.8%), and a high symptom class (N = 112; 34.8%). PGD, PTSD, and depression scores (assessed concurrently and at 6 months follow-up) differed significantly between classes, such that low symptom class < predominantly PGD class < high symptom class. Being a woman, younger, more recently bereaved, experiencing deaths of a partner/child and unnatural losses, plus maladaptive cognitions and avoidance behaviours were associated with membership of the pervasive symptom classes.
Conclusion: In the first 6 months of bereavement, meaningful subgroups of bereaved people can be distinguished, which highlights the relevance of early detection of people with elevated bereavement-related distress and offering them preventive interventions that foster adaptation to loss.
Complicated grief (CG) is a debilitating syndrome characterized by persisting and intense distress and impairment after the death of a loved one. The biological mechanisms associated with this syndrome remain unclear but may involve neurobiological pathways implicated in the stress response and attachment systems. The neuropeptide oxytocin has been implicated in attachment and social behaviour, and loss of social bonds has been associated with disruptions in oxytocin signalling. Furthermore, prior research has reported associations between circulating oxytocin and other mental illnesses, including depression. The present pilot study aimed to examine plasma levels of oxytocin in bereaved adults with primary CG (n = 47) compared to age- and sex-matched bereaved individuals with primary Major Depressive Disorder (MDD) (n = 46), and bereaved individuals without any mental disorder (n = 46). In unadjusted analyses comparing groups according to primary diagnosis, oxytocin levels were significantly higher for primary CG compared to primary MDD (p = 0.013), but not compared to bereaved controls (p = 0.069). In adjusted regression models, having a primary or probable (Inventory of Complicated Grief = 30) diagnosis of CG was associated with significantly higher oxytocin levels (p = 0.001). While additional research is needed, findings from our pilot study provide preliminary support for recent conceptualizations of CG implicating a role for oxytocin and the attachment system. Importantly, these findings contribute to the limited current knowledge about possible biological correlates of CG.