Patients with advanced cancer and their spouses parenting minor children: The role of the relationship context in parenting concerns.

OBJECTIVE: Patients with advanced cancer who parent minor children report parenting concerns and increased psychological distress. This cross-sectional study seeks to understand parenting-related issues in patients and spousal caregivers from a relationship perspective. METHODS: Patients with a metastatic solid malignancy and their spouses independently completed cross-sectional assessments of psychological distress (Hospital Anxiety and Depression Scale), parenting concerns (Parenting Concern Questionnaire) and efficacy (Cancer-Related Parenting Self-Efficacy Scale), and relationship measures (DAS-7, Couples' Illness Communication Scale, and Family Relationship Index). RESULTS: Of the 51 patients (57% female, 49% NHW, mean age 42 years) and spouses (43% female, 43% NHW, mean age of 42 years), approximately 50% couples endorsed psychological distress and were at risk for family dysfunction. Spouses reported significantly higher levels of parenting-related concerns (t = -2.0, p < 0.05) and anxiety (t = -2.8, p < 0.001) than patients. Parenting concerns were significantly associated with illness communication (r = -0.56, p < 0.001) and family function (r = -0.38, p < 0.001). Although the expected interactions between parenting concerns and relationship variables (i.e., illness communication, dyadic adjustment, and family function) were significant for depressive symptoms at p < 0.05, the associations were not in the expected direction. Relationship function buffered against depressive symptoms for those with low rather than high parenting concerns. CONCLUSIONS: Not only patients but also spouses report cancer-related parenting concerns. The associations between parenting concerns and distress were stronger for spouses than patients. Dual caregiving appears to be a particularly stressful role. Because relationship function was associated with parenting concerns, we suggest that parent support programs that are couple-based and include both parenting-specific and relationship-specific content may be most effective in reducing distress for this vulnerable population.

Distress, demoralization, and fulfillment among palliative care providers during the COVID-19 pandemic.

OBJECTIVES: Prolonged distress is a risk factor for burnout among health-care providers (HCP) and may contribute to demoralization. We examined sources of distress during the COVID-19 pandemic and associations with demoralization. METHODS: This prospective cross-sectional survey of HCP was conducted among palliative care providers of an academic medical center. Participants completed a survey evaluating sources of distress and the Demoralization Scale-II (DS-II) to measure the intensity of demoralization. RESULTS: Of 106 eligible participants, 74 (70%) completed the survey. DS-II median (range) score was 2 (0-19). There were no statistically significant associations with demographic characteristics. Participants reported high rates of distress for multiple reasons and high rates of sense of fulfillment (90%) and satisfaction (89%) with their profession. SIGNIFICANCE OF RESULTS: Our study identified high levels of distress but low demoralization rates. Further study to evaluate fulfillment and satisfaction as protective factors against demoralization and burnout is indicated.

Supportive Care for Dual Caregivers who Care for Their Partner With Cancer and Their Young Children.

PURPOSE: Advanced cancer patients and their spouses who parent minor children report parenting concerns and increased psychological distress. This single-arm trial examined the feasibility and initial evidence for efficacy of a novel parent support program. METHODS: Patients with a metastatic solid malignancy and their spouses completed self-reported assessments of psychological distress (HADS), parenting concerns (PCQ) and efficacy (CaPSE) at baseline. Both patients and spouses jointly attended the first two sessions addressing illness communication and family routines. Spouses individually attended two additional sessions focusing on caregiver support and death preparedness. All four sessions were delivered via videoconference by a licensed psychological counselor. Dyads completed program evaluations and were reassessed six and 12 weeks postintervention. RESULTS: With a consent rate of 61%, 10 patients (50% female; 90% non-Hispanic White; mean age = 42 years) and their spouses (50% female; 70% non-Hispanic White; mean age = 42 years) completed the assessments. All patients and 90% of spouses attended all intervention sessions and evaluated the program favorably. Paired t-tests revealed significant improvements in patients' parenting concerns at the six weeks (P = 0.003) and parenting efficacy at the six weeks (P = 0.03) and 12 weeks (P = 0.03) follow-ups. For spouses, we found significant improvements in parenting efficacy (P < 0.001) and depressive symptoms (P = 0.04) at six weeks and parenting concerns at both six weeks (P = 0.006) and 12 weeks (P = 0.001) follow-ups. CONCLUSIONS: The initial testing of our parenting intervention yielded promising results regarding feasibility and an initial signal of intervention efficacy. Thus, a randomized controlled trial for further testing is warranted.

Living With an Advanced Cancer While Parenting Minor Children: A Needs Assessment Study.

BACKGROUND: Evidence-based interventions addressing the needs of couples co-parenting young children while facing an advanced cancer diagnosis are lacking. Thus, this study seeks to identify parenting-related intervention needs and delivery preferences of advanced cancer patients and their spouses/co-parents. METHODS: Twenty-one couples completed quantitative measures of cancer-related parenting concerns, relationship and family functioning, and service needs along with individual semi-structured interviews. RESULTS: Patients (mean age=44 years, 48% female, 91% White) and spouses (mean age=45 years, 52% female, 91% White) reported family distress (62% of couples) and marital distress (29% of couples). Parenting concerns were generally high with patients revealing concerns particularly regarding the practical impact of the cancer on the child(ren). Spouses rated concerns about the co-parent significantly higher (P<.001) than patients. Parenting concerns were inversely associated with relationship (P<.001 for patients; P=.03 for spouses) and family functioning (P<.001 for patients). Themes identified through qualitative interviews include needs related to maintenance of family routines and traditions, childcare, transportation, meals, home maintenance, and finances. Couples who endorsed marital distress also indicated a need for conflict resolution skills. All patients and 89% of spouses would like to receive parenting-related education/services; up to 50% of couples preferred targeted, self-led readings without therapist support; and up to 50% desired counseling sessions indicating a preference towards dyadic and video conferenced intervention delivery. CONCLUSIONS: The delivery of optimal supportive care involves a family-focused perspective such as screening for parenting status and referrals to social work services to address the need of tangible resources and manage parenting-related distress.

Treating Radiation Anxiety With Systematic Desensitization: Head and Neck Cancer Case Reports.

Introduction: Head and neck cancer patients have high rates of psychological distress, which may be exacerbated by the treatments they receive. Many patients who undergo radiation therapy report significant anxiety associated with the thermoplastic mask required for immobilization during treatment. Case Description: This report presents two examples of head and neck cancer patients reporting high mask anxiety, along with a history of claustrophobia, who expressed concern about their abilities to initiate and adhere to treatment. Both were referred to supportive care psychology before radiation treatment initiation. With counseling and the use of systematic desensitization, they were successfully able to complete their treatments. Discussion: Results of these case reports highlight the value of integrating early supportive care in the treatment of head and neck cancer and support the need for further study in future randomized controlled trials.

Physical and Psychosocial Symptoms of Young Adult Patients Referred to the Supportive Care Mobile Team.

Young adult (YA) aged cancer patients have unique psychosocial needs with studies indicating more symptoms and emotional distress compared to older patients. Our study aimed to compare clinical characteristics and symptom distress between YAs and older adults. We retrospectively studied 896 randomly selected patients across 3 age groups: 18-39 YAs (n = 297), 40-64 (n = 300), and 65 and older (n = 299). We compared medical, psychosocial history, Morphine Equivalent Daily Dose (MEDD), Edmonton Symptom Assessment Scale (ESAS) scores, and Eastern Cooperative Oncology Group (ECOG) scores at the time of initial inpatient consultation with supportive care. YAs were more frequently female and white, with higher ECOG scores, had more self-reported psychiatric history and worse ESAS sleep scores compared to the other age cohort groups. YAs had higher pain expression than those of 65 years and older. YAs were more likely to have children younger than 18 years old, which was associated with worse pain, sleep, and financial distress. In general, YAs did not report higher symptoms distress, with the exception of insomnia and self-reported psychiatric history. Importantly, YAs with children was associated with higher ratings of pain, sleep difficulties, and financial distress. Overall, results suggest YAs may benefit from specialized services to address their unique psychosocial needs.

Psychological Aspects of Care in Cancer Patients in the Last Weeks/Days of Life.

Palliative care is comprised of an interdisciplinary team (IDT) approach with members from different disciplines who collaboratively work together to reduce multidimensional components of pain and suffering and improve quality of life for patients coping with a terminal illness. Psychosocial team members are integral to the palliative care IDT and provide expertise in assessment and empirically validated interventions to address psychological distress. The following paper will provide a review of different facets of psychological distress experienced by advanced cancer patients such as psychological disorders, existential distress, spiritual distress, caregiver distress, parental distress, and grief. Finally, an overview of commonly used screening and assessment tools as well as psychological interventions relevant for the palliative care population is presented.

Dying Alone during a Pandemic.

Background: The coronavirus disease 2019 (COVID-19) pandemic is an unprecedented experience that has had profound impact and consequences for health care providers, visitation policies, and procedures. Hospitals and health care facilities were forced to implement changes to visitation policies, in an effort, to minimize transmission of the virus, which unfortunately had negative impact on patients' and family members' well-being as well as moral distress for the staff. Objectives: We present here a case illustration of the impacts of such a response to the pandemic situation at our institution, including challenges for uniformly implementing such a change along with suggestions to support patients during these difficult times. Conclusion: Health care facilities should make efforts to maintain balance between safety precautions and minimizing potential negative impacts on patients, families, and staff by implementing innovative measures to support ongoing communication and access to family support.

Enhancing palliative care patient access to psychological counseling through outreach telehealth services.

CONTEXT: Palliative care encompasses an interdisciplinary team, including mental health care professionals, to address psychological distress of cancer patients. OBJECTIVES: To present the implementation of an outreach counseling program via videoconferencing or telephone to patients receiving care in an outpatient palliative care clinic and to compare patients using this service to those who only received psychological counseling in our outpatient clinic. METHODS: We conducted a retrospective chart review of cancer patients seen for psychology counseling services in an outpatient supportive care center between June 2015 and March 2017. RESULTS: We reviewed 2072 unique patients (52% of the total patients seen at the outpatient Supportive Care Center), who had 4567 total counseling encounters across outreach and outpatient settings. A total of 452 (22%) patients participated in a combination of outpatient and outreach counseling services. Patients who participated in outreach services had significantly more encounters (311 [69%] had two to five sessions) compared with those who had outpatient services only (1137 [70%] had one session only) (P < .001). Outreach patients also had shorter times between the initial and follow-up encounters (median 14 days) compared with those who had outpatient services only (median 30 days) (P < .0001). CONCLUSIONS: Outreach telehealth counseling services was found to enhance palliative care patient access to psychological counseling. These services represent an additional modality for providing continuous psychological care.

Introducing psychology services to advanced cancer patients: A randomized double-blind trial.

CONTEXT: Psychology services utilization in cancer patients remains low due to barriers such as patient/caregiver acceptance of counseling. OBJECTIVE: We aimed to determine if the manner of introducing psychology services impacted patients' acceptance of services and to identify factors associated with acceptance and barriers to psychology utilization. METHODS: In this double-blind randomized cross-over trial, cancer patients with no prior psychology services observed two video vignettes: (a) physician introducing counselor and psychology services to the patient (PI) and (b) counselor introducing psychology services alone (CI). A counterbalanced design was used to control for order effects. After viewing both videos, patients completed a survey regarding preference, attitudes, and barriers for psychology services. Patients and investigators were blinded to the purpose of the study and content and order of videos, respectively. We hypothesized that patients would prefer physician introduction of counselor. RESULTS: One hundred patients participated: 40 (40%) expressed no difference, 34 (34%) preferred PI, and 26 (26%) preferred CI (P > .2). Younger patients (less than 40 years) either preferred PI (86%) or had no preference (14%, P = .01). Most reported awareness of available psychology services (N = 63), and half (N = 50) were offered psychology services by their physician. Only 40 (40%) and 43 (43%) patients felt psychology services would be helpful for them and their family/caregivers, respectively. Patients who perceived psychology as helpful for self or family had higher anxiety (P = .01 and P = .006, respectively). CONCLUSIONS: No significant difference was found in patient preference of introducing psychology services except in patients less than 40 years old who preferred PI.

Characteristics and Outcomes of Psychology Referrals in a Palliative Care Department.

CONTEXT: Psychologists can provide unique contributions to interdisciplinary palliative care. Despite research indicating high distress in palliative care cancer patients, little has been reported regarding the feasibility and practice of psychology in this setting. OBJECTIVES: To review the integration of clinical psychology practice in a palliative care department at a major comprehensive cancer center. METHODS: Retrospective chart review of 1940 unique cancer patients (6451 total patient contacts) referred for psychology services provided by clinical psychologists in palliative care from September 1, 2013 to February 29, 2016. RESULTS: Psychologists provided services to 1644 inpatients (24% of palliative care inpatients) and 296 outpatients (19% of palliative care outpatients). Most of them (85%) received services in the inpatient setting. Most patients were females (57%) and white (68%) with a variety of cancer diagnoses. Adjustment disorders were the most prevalent in both settings with significant differences in other Diagnostic and Statistical Manual of Mental Disorders (5th Edition) diagnoses by service location (P < 0.0001). Psychological assessment (86%) and supportive expressive counseling (79%) were the most frequent services provided in the initial consult. Duration of initial visit was significantly longer in outpatient (median 60 minutes) compared with inpatient setting (median 40 minutes) (P < 0.0001). No significant differences were noted between settings regarding the median number of counseling sessions per patient; however, most (70%) only received one or two sessions. Over time, total patient encounters increased in the inpatient setting (P < 0.0001), whereas session lengths in both settings significantly decreased (P < 0.0001). CONCLUSION: Palliative care psychology services successfully integrated into an interdisciplinary palliative care department and rapidly grew in both inpatient and outpatient settings.