EMPOWER: A Multi-Site Pilot Trial to Reduce Distress in Surrogate Decision-Makers in the ICU.

CONTEXT: Efforts to reduce the psychological distress of surrogate decision-makers of critically ill patients have had limited success, and some have even exacerbated distress. OBJECTIVES: The aim of this study was to determine the feasibility, acceptability, and preliminary efficacy of EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), an ultra-brief (∼2-hour), 6-module manualized psychological intervention for surrogates. METHODS: Surrogates who reported significant anxiety and/or an emotionally close relationship with the patient (n=60) were randomized to receive EMPOWER or enhanced usual care (EUC) at one of three metropolitan hospitals. Participants completed evaluations of EMPOWER's acceptability and measures of psychological distress pre-intervention, immediately post-intervention, and at 1- and 3-month follow-up assessments. RESULTS: Delivery of EMPOWER appeared feasible, with 89% of participants completing all 6 modules, and acceptable, with high ratings of satisfaction (mean=4.5/5, SD = .90). Compared to EUC, intent-to-treat analyses showed EMPOWER was superior at reducing peritraumatic distress (Cohen's d = -0.21, small effect) immediately post-intervention and grief intensity (d = -0.70, medium-large effect), posttraumatic stress (d = -0.74, medium-large effect), experiential avoidance (d = -0.46, medium effect), and depression (d = -0.34, small effect) 3 months post-intervention. Surrogate satisfaction with overall critical care (d = 0.27, small effect) was higher among surrogates randomized to EMPOWER. CONCLUSIONS: EMPOWER appeared feasible and acceptable, increased surrogates' satisfaction with critical care, and prevented escalation of posttraumatic stress, grief, and depression 3 months later.

Establishing the Feasibility and Acceptability of a Caregiver Targeted Intervention to Improve Pain Assessment Among Persons With Dementia.

Background and Objectives: Despite its prevalence and impact, pain is underdetected and undermanaged in persons with dementia. Family caregivers are well positioned to detect pain and facilitate its management in their care recipients, but they lack training in symptom recognition and communication. This study reports findings from a pilot trial evaluating the Pain Identification and Communication Toolkit (PICT), a multicomponent intervention that provides training in observational pain assessment and coaching in pain communication techniques. Research Design and Methods: Family caregivers of persons with comorbid pain and moderate-to-advanced dementia were randomly assigned to PICT (n = 19) or a control condition (n = 15). Caregivers in the PICT group participated in four weekly sessions delivered by telephone with a trained interventionist; caregivers in the control group received an information pamphlet about pain and dementia. All participants completed surveys at baseline and 12 weeks. Caregivers in the intervention group also completed semistructured interviews at 12 weeks. Quantitative data were analyzed using descriptive statistics and t tests; qualitative data were analyzed using content analysis. Results: All participants (100%) in the PICT group completed the intervention and most completed the 12-week assessment (94%). PICT randomized caregivers reported that the intervention helped them to feel more confident in their ability to recognize (67%) and communicate about pain symptoms (83%). At 12 weeks, caregivers in the PICT group showed a statistically significant improvement in self-efficacy in pain-related communication. In qualitative interviews, caregivers emphasized the utility of PICT's components, including pain assessment tools, and offered considerations for future enhancements, such as technology-based adaptations and integration within care delivery systems. Discussion and Implications: This pilot trial demonstrates that PICT is feasible to implement, acceptable to caregivers, and has the potential to improve confidence in recognizing and communicating about pain. Results support conducting a fully powered efficacy trial, an important step toward future integration into real-world care delivery. Clinical Trial Registration Number: NCT03853291.

An examination and proposed definitions of family members' grief prior to the death of individuals with a life-limiting illness: A systematic review.

BACKGROUND: Research has extensively examined family members' grief prior to the death of an individual with a life-limiting illness but several inconsistencies in its conceptualization of related constructs, yet significant conceptualization issues exist. AIM: This study aimed to identify and characterize studies published on family members grief before the death of an individual with a life-limiting illness, and propose definitions based on past studies in order to initiate conceptual clarity. DESIGN: A mixed-method systematic review utilized six databases and was last conducted July 10, 2021. The search strategy was developed using Medical Subject Headings. This study was prospectively registered on PROSPERO (CRD42020166254). RESULTS: One hundred thirty-four full-text articles met inclusion criteria. This review revealed across studies a wide variation in terminology, conceptualization, and characterization of grief before the death. More than 18 terms and 30 definitions have been used. In many cases, the same term (e.g. anticipatory grief) was defined differently across studies. CONCLUSIONS: We found grief occurring before the death of a person with a life-limiting illness, which we termed pre-death grief, is comprised of two distinct constructs: anticipatory grief and illness-related grief. Anticipatory grief is future-oriented and is characterized by separation distress and worry about a future without the person with the life-limiting illness being physically present. Illness-related grief is present-oriented and is characterized by grief over current and ongoing losses experienced during the illness trajectory. These definitions provide the field with uniform constructs to advance the study of grief before the death of an individual with a life-limiting illness.

Development and preliminary evaluation of EMPOWER for surrogate decision-makers of critically ill patients.

OBJECTIVE: The objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates' mental health and patient outcomes. METHOD: Part 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15-20 min modules, totaling 1.5-2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments. RESULTS: Part 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = -0.41), peritraumatic distress (d = -0.24), and experiential avoidance (d = -0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = -0.94), depression (d = -0.23), anxiety (d = -0.29), and experiential avoidance (d = -0.30). SIGNIFICANCE OF RESULTS: Preliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.

When Ambiguous Loss Becomes Ambiguous Grief: Clinical Work with Bereaved Dementia Caregivers.

The experience of caring for someone with dementia can be heartbreaking. The losses inherent to caregiving itself can be difficult to reconcile after the death of a person with dementia, causing challenges in the bereavement stage. Although there is often significant social support to help people process the death of someone close to them, clinicians can struggle to help bereaved dementia caregivers integrate their ambiguous losses from caregiving, such as loss of roles, functions, and relationships, into a postdeath bereavement process. Many socioeconomic, personality, and family functioning factors impact an individual caregiver's experience, and there are more global influences from the nature of dementia caregiving itself that must be understood to best support a caregiver. Using the lens of the dementia grief model and examples from a case study, this article seeks to illustrate the dynamics inherent in integrating ambiguous losses following the death of a person from dementia, and it proposes clinical goals for working effectively with this population.

Fear of cancer recurrence in lymphoma survivors: A descriptive study.

Objectives: Fear of cancer recurrence (FCR) is a common experience among cancer survivors and often persists after the termination of cancer treatments. The purpose of this paper was to evaluate FCR in survivors of Hodgkin's and diffuse large B-cell lymphomas, given a high rate of survivorship in this patient population.Research Approach: The parent study was a multi-site, cluster-randomized trial to assess a communication skills intervention: survivorship planning consultation (versus a time-attention control - wellness rehabilitation intervention) to promote transition to survivorship.Participants & Methodological Approach: 199 patients enrolled in the study and completed a survivorship (or control) consultation one-month after receiving the news of their survivorship status; 141 of those patients (n = 92 experimental arm, n = 49 control arm) completed an interview at their 6-month follow-up consultation. In the interview, participants described frequency of FCR, causes of FCR, coping mechanisms, and specific things oncologists said to reduce FCR. Both qualitative and quantitative methods were utilized for analyzing participant responses.Findings: The majority (88%) of participants reported experiencing FCR, with a higher number of participants in the experimental arm significantly more likely to endorse FCR compared to the control group participants. The main causes of FCR were having medical appointments and concerns about potential relapse and secondary cancers. Participants endorsed utilizing self-sufficient coping mechanisms. As well, participants reported that oncologists most frequently cited specific cure rates of lymphoma to reduce patients' FCR.Interpretation & Implications for Psychosocial Providers: Communication skills training programs should emphasize FCR in survivorship consultations.

The Associations Of Maternal Emotion Dysregulation And Early Child Dissociative Behaviors.

Although dissociation is believed to develop in early childhood, there is little research prospectively examining childhood dissociation or parental contributions related to its development. The current study sought to examine parent factors prospectively related to changes in dissociation symptoms in childhood. The current study sampled 68 mother-child dyads at two time points, when children were 3-4 and then 5-6 years, in which mothers with emotion dysregulation were oversampled. Maternal emotion dysregulation was assessed at both time points. Maternal dissociation was assessed only at time two. Child dissociation was assessed at each time point using a modified subscale of the Child Behavioral Checklist. Results showed moderate stability in childhood dissociation across time points. Further, maternal emotion dysregulation and dissociation were both significantly correlated with children's dissociation. Accounting for several covariates, time one maternal emotion dysregulation was prospectively associated with preschoolers' dissociative behaviors at 5-6 years old. The present work suggests that symptoms of dissociation can be observed early in childhood and that maternal factors play an early role in the development of dissociation in children.

A Diet High in Processed Foods, Total Carbohydrates and Added Sugars, and Low in Vegetables and Protein Is Characteristic of Youth with Avoidant/Restrictive Food Intake Disorder.

Avoidant/restrictive food intake disorder (ARFID) is characterized in part by limited dietary variety, but dietary characteristics of this disorder have not yet been systematically studied. Our objective was to examine dietary intake defined by diet variety, macronutrient intake, and micronutrient intake in children and adolescents with full or subthreshold ARFID in comparison to healthy controls. We collected and analyzed four-day food record data for 52 participants with full or subthreshold ARFID, and 52 healthy controls, aged 9-22 years. We examined frequency of commonly reported foods by logistic regression and intake by food groups, macronutrients, and micronutrients between groups with repeated-measures ANOVA. Participants with full or subthreshold ARFID did not report any fruit or vegetable category in their top five most commonly reported food categories, whereas these food groups occupied three of the top five groups for healthy controls. Vegetable and protein intake were significantly lower in full or subthreshold ARFID compared to healthy controls. Intakes of added sugars and total carbohydrates were significantly higher in full or subthreshold ARFID compared to healthy controls. Individuals with full or subthreshold ARFID had lower intake of vitamins K and B12, consistent with limited vegetable and protein intake compared to healthy controls. Our results support the need for diet diversification as part of therapeutic interventions for ARFID to reduce risk for nutrient insufficiencies and related complications.

Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience (EMPOWER) among Surrogate Decision-Makers of ICU Patients: study protocol for a randomized controlled trial.

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.

Suicidal Ideation in Bereavement: A Systematic Review.

Background: Bereavement is associated with impaired mental health, increases in adverse health behaviors, and heightened risk of suicidal ideation, attempts, and death by suicide. The purpose of this literature review was to explore associations between cause of death and suicidal thoughts among bereaved individuals. Our aim was to compare incidence of suicidal ideation by cause of death and identify gaps in this literature to guide future research and clinical intervention. Methods: PRISMA-P guidelines were used to structure an electronic literature search in the PsycINFO, MEDLINE, and Web of Science databases. The search focused on English language studies that were published before February 2019 and sought to compare rates of suicidal ideation among bereaved people who lost a loved one to suicide, accidental overdose, cancer, dementia, cardiovascular disease, and HIV/AIDs. Results: Ten articles were identified with suicide as cause of death, zero articles for accidental overdose, zero articles for cardiovascular disease, eight articles for cancer, one article for dementia, and one article for HIV/AIDs. Given the limited number of articles generated by our search, a formal meta-analysis was not appropriate. However, a comparison of results did suggest that suicide bereavement was associated with the highest rates of suicide ideation (14.1% to 49%). Stigma, isolation, avoidance behaviors, and psychological distress were associated with suicidal thoughts among bereaved individuals, regardless of the deceased's cause of death. Conclusions: Findings of this literature search revealed significant gaps in the literature, especially regarding thoughts of suicide in bereaved survivors of accidental overdose and cardiovascular disease. Results suggest that multiple causes of death are associated with suicidal ideation in bereavement, but that suicide bereavement may be the cause of death associated with the highest risk of suicidal ideation. More research is needed to understand the ways in which cause of death influences prevalence, risk, and protective factors associated with suicidal thoughts among bereaved individuals.

Efficacy of a survivorship-focused consultation versus a time-controlled rehabilitation consultation in patients with lymphoma: A cluster randomized controlled trial.

BACKGROUND: Survivors of cancer often describe a sense of abandonment after treatment along with heightened uncertainty and limited knowledge of what lies ahead. This study examined the efficacy of a survivorship care plan (SCP) intervention to help physicians to address survivorship issues through communication skills training plus a new consultation focused on the use of an SCP for patients with Hodgkin lymphoma and diffuse large B-cell lymphoma. METHODS: This 4-site cluster randomized trial examined the efficacy of a survivorship planning consultation (SPC) in patients who achieved complete remission after the completion of first-line therapy (for the SPC, physicians received communication skills training and, using an SCP, applied those skills in a survivorship-focused office visit) versus a control arm in which physicians were trained in and subsequently provided a time-controlled, manualized wellness rehabilitation consultation (WRC) focused only on discussion of healthy nutrition and exercise as rehabilitation after chemotherapy. The primary outcomes for patients were changes in knowledge about lymphoma and adherence to physicians' recommendations for vaccinations and cancer screenings. RESULTS: Forty-two physicians and 198 patients participated across the 4 sites. Patients whose physicians were in the SPC arm had greater knowledge about their lymphoma (P = .01) and showed greater adherence to physician recommendations for influenza vaccinations (P = .02) and colonoscopy (P = .02) than patients whose physicians were in the WRC arm. CONCLUSIONS: A dedicated consultation using an SCP and supported by communication skills training may enhance patients' knowledge and adherence to some health promotion recommendations.

Promoting patient participation in healthcare interactions through communication skills training: A systematic review.

OBJECTIVE: To present literature on training patients in the use of effective communication skills. METHODS: Systematic searches were conducted in six databases. References were screened for inclusion through several phases. Extracted data included intervention study design, sample characteristics, content and structure of training programs, outcomes assessed, and findings reported. RESULTS: A total of 32 unique intervention studies were included. Most targeted primary care or cancer patients and used a randomized controlled study design. Interventions used a variety of training formats and modes of delivering educational material. Reported findings suggest that communication training is an effective approach to increase patients' total level of active participation in healthcare interactions and that some communication behaviors may be more amenable to training (e.g., expressing concerns). Trained patients do not have longer visits and tend to receive more information from their providers. Most studies have found no relationship between communication training and improved health, psychosocial wellbeing, or treatment-related outcomes. CONCLUSIONS: Findings reinforce the importance and potential benefits of patient communication training. PRACTICE IMPLICATIONS: Additional research is warranted to determine the most efficacious training programs with the strongest potential for dissemination.