Publications by authors named "Lori Wiener"

129 Publications

"Some things are even worse than telling a child he is going to die": Pediatric oncology healthcare professionals perspectives on communicating with children about cancer and end of life.

Pediatr Blood Cancer 2021 Dec 26:e29533. Epub 2021 Dec 26.

Pediatric Hematology Oncology Department, Safra Children's Hospital, Sheba Medical Center, Ramat-Gan, Israel.

Introduction: This study explored pediatric oncology healthcare professionals' (HCPs) perspectives on direct communication with children with advanced disease about their disease, palliative care, and end-of-life (EOL) communication.

Methods: Forty-six pediatric oncologists, nurses, psychosocial team members, and other HCPs from six hospital centers in Israel participated in semi-structured interviews. The Grounded Theory method was used. Data were analyzed line-by-line with codes and categories developed inductively from participants' narratives.

Results: HCPs viewed communication about disease progression and EOL as vital because children were often aware of their prognosis, because lack of communication could lead to emotional distress, and because communication is a prerequisite for shared decision-making. HCPs identified several barriers for communication including HCP barriers (such as emotional strains, lack of training), parental barriers, guardianship law, and language and culture. HCPs also described strategies to promote EOL communication. Direct strategies include tailoring communication, allowing for silence, echoing children's questions, giving information gradually, and answering direct questions honestly. Indirect strategies included encouraging parents to talk to their children and teamwork with colleagues.

Conclusions: Open communication with children who have cancer is essential. Nevertheless, multiple barriers persist. The rising accessibility of online information calls for urgent training of HCPs in communication so that children will not turn to unmediated and potentially misleading information online in the absence of HCP communication. Evidence-based effective communication training modules and emotional support should be offered to HCPs. Knowledge about children's development, age-appropriate communication, and cultural sensitivity should be included in this training.
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http://dx.doi.org/10.1002/pbc.29533DOI Listing
December 2021

Mapping the Landscape of Advance Care Planning in Adolescents and Young Adults Receiving Allogeneic Hematopoietic Stem Cell Transplantation: A 5-Year Retrospective Review.

Transplant Cell Ther 2021 Dec 20. Epub 2021 Dec 20.

Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland.

Allogeneic hematopoietic stem cell transplantation (HSCT) carries significant risks of morbidity and mortality. Participation in advance care planning (ACP) is crucial to promote patient-centered care and has been shown to have positive impacts on patients, caregivers, and providers. Historically, both HSCT recipients and adolescents and young adults (AYAs) are significantly less likely to engage in ACP. We sought to characterize ACP utilization in AYAs undergoing HSCT by evaluating the frequency of different types of ACP documentation over time and identifying demographic and clinical factors associated with documentation of each type of ACP. We conducted a single-center retrospective review of the electronic health record (EHR) of AYAs (age 15 to 39 years) who underwent allogeneic HSCT between 2015 and 2020. EHR documents were screened for 3 predefined categories of ACP: (1) advance directives (ADs) or medical orders (MOs), which included proof of signed paper directives, expressions of preferred code status, and identification of a healthcare proxy; (2) goals of care (GOC) conversations, which included discussions of medical care in a specific situation informed by patients' priorities; and (3) other ACP conversations, which included more general discussions of patients' values regarding their care or legacy wishes. Documents were coded by 2 researchers, and discrepant categorizations were reviewed by a third researcher. Patients age <18 years on the day of transplantation were excluded in the analyses of AD/MO documentation. Univariate and multivariate logistic regression were used to test for associations between patient factors and documentation of each type of ACP. For deceased patients, Kaplan-Meier curves were created to illustrate the time-to-event relationship between days before death and documentation of each type of ACP. Sixty-eight thousand documents associated with 219 patients were reviewed, and 666 ACP documents associated with 190 patients were identified. Few of the 219 patients had documented GOC (n = 29; 13%) or other ACP conversations (n = 81; 37%). A subset of patients (n = 28; 13%) had no documented ACP. Most of the 201 patients age ≥18 years had a documented AD/MO (n = 172; 86%). No tested factors were significantly associated with documentation of ADs/MOs. GOC and other ACP conversations were more likely to occur in patients with a palliative care consult, and patients with a malignant diagnosis were also more likely to engage in GOC conversations. More than 50% of the documentation occurred in the subset of 39 deceased patients, with one-half of AD/MO documentation in the last 67 days of life, one-half of other ACP documentation in the last 20 days of life, and one-half of GOC documentation in the final 2 days of life. Although the majority of AYA patients receiving HSCT did have documentation of ADs/MOs, few patients had documented GOC or other ACP conversations. The bulk of all ACP conversations occurred in patients that ultimately died and who were very close to the end of life. Our results support ongoing efforts to improve the implementation of ACP in this vulnerable population, particularly for those undergoing HSCT for nonmalignant conditions.
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http://dx.doi.org/10.1016/j.jtct.2021.12.007DOI Listing
December 2021

Considerations for conducting and reporting digitally supported cognitive interviews with children and adults.

J Patient Rep Outcomes 2021 Dec 18;5(1):131. Epub 2021 Dec 18.

Pediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, MD, USA.

Background: Cognitive interviewing is a well-established qualitative method used to develop and refine PRO measures. A range of digital technologies including phone, web conferencing, and electronic survey platforms can be leveraged to support the conduct of cognitive interviewing in both children and adults. These technologies offer a potential solution to enrolling underrepresented populations, including those with rare conditions, functional limitations and geographic or socioeconomic barriers. In the aftermath of the COVID-19 pandemic, the use of digital technologies for qualitative interviewing will remain essential. However, there is limited guidance about adapting cognitive interviewing procedures to allow for remote data capture, especially with children.

Methods: Synthesizing the literature and our research experiences during the COVID-19 pandemic, we examine considerations for implementing digitally supported cognitive interviews with children, adolescents, and adults. We offer recommendations to optimize data quality and empirical rigor and illustrate the application of these recommendations in an ongoing cognitive interviewing study to develop and refine a new pediatric PRO measure.

Results: Good research practices must address participant and researcher preparation for study-related procedures and should anticipate and pre-emptively manage technological barriers. Field notes should detail interview context, audio/video cues, and any impact of technological difficulties on data quality. The approaches we recommend have been tested in an ongoing cognitive interviewing study that is enrolling children/adolescents with cGVHD ages 5-17 and their caregivers [NCT04044365]. The combined use of telephone and videoconferencing to conduct cognitive interviews remotely is feasible and acceptable and yields meaningful data to improve the content validity of our new PRO measure of cGVHD symptom bother.

Conclusion: Digitally supported cognitive interviewing procedures will be increasingly employed. Remote data collection can accelerate accrual, particularly in multi-site studies, and may allow for interviewer personnel and data management to be centralized within a coordinating center, thus conserving resources. Research is needed to further test and refine techniques for remote cognitive interviewing, particularly in traditionally underrepresented populations, including children and non-English speakers. Expansion of international standards to address digitally supported remote qualitative data capture appears warranted.
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http://dx.doi.org/10.1186/s41687-021-00371-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8683807PMC
December 2021

Utilization of Psychotherapeutic Interventions by Pediatric Psychosocial Providers.

Children (Basel) 2021 Nov 12;8(11). Epub 2021 Nov 12.

Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD 20892, USA.

One of the Standards of Psychosocial Care for Children with Cancer and their Families recommends that all youth with cancer and their family members have access to psychotherapeutic interventions and support throughout the cancer trajectory. This study was created to identify the psychosocial interventions and services provided to children with cancer and their family members, to ascertain whether there are differences in interventions provided by age of the patient and stage of treatment, and to learn about barriers to psychosocial service provision. An online survey was disseminated to psychosocial providers through the listservs of national and international professional organizations. The majority of the 242 respondents were either psychologists (39.3%) or social workers (26.9%) and 79.7% worked in the United States. The intervention offered most often to pediatric patients, caregivers, and siblings, at every stage of treatment, was psychoeducation (41.7-48.8%). Evidence-based interventions, including cognitive behavioral therapy (56.6%) and mindfulness-based interventions (57.9%) were reported to be frequently used with patients. Interventions designed specifically for the pediatric oncology population were not commonly endorsed. Psychosocial providers reported quality of care would be improved by additional staff, better communication/collaboration with medical team members and increased community-based resources. Future research should focus on improving accessibility to population-specific evidenced-based interventions and translating science to practice.
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http://dx.doi.org/10.3390/children8111045DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8625037PMC
November 2021

Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer.

JAMA Netw Open 2021 08 2;4(8):e2121888. Epub 2021 Aug 2.

Division of Research, Kaiser Permanente Northern California, Oakland.

Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed.

Objective: To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities.

Design, Setting, And Participants: This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians.

Exposure: Stage IV or recurrent cancer.

Main Outcomes And Measures: Care priorities.

Results: Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare.

Conclusions And Relevance: The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care.
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http://dx.doi.org/10.1001/jamanetworkopen.2021.21888DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8383130PMC
August 2021

Moral Distress Among Oncology Social Workers.

JCO Oncol Pract 2021 07;17(7):e947-e957

University of Michigan School of Social Work, Ann Arbor, MI.

Purpose: Literature on moral distress among oncology social workers (OSWs) is sparse. The aim of the current study was to examine the prevalence of moral distress and its domains of influence, and to identify demographic and work-related characteristics associated with moral distress among OSWs.

Methods: Data came from the Oncology Social Work Competencies, Opportunities, Roles, and Expertise survey, conducted from August to September 2020 (during the COVID-19 global pandemic). Data collected included demographic information (eg, age, sex, and race) and work-related characteristics (eg, job position, organization type, work setting, employment status, salary, years in the profession, and OSW-C certification). Moral distress was measured using the Measure of Moral Distress for Healthcare Professionals. Tests of association, including multivariate linear regression, were conducted to achieve the research aims.

Results: Total moral distress scores on the Measure of Moral Distress for Healthcare Professionals (range 0-432) for 745 OSWs ranged from 1 to 273, with an average score of 74.0. The three highest indicators of moral distress were observed in the patient or family experience domain. Higher levels of moral distress were associated with younger age, being a direct service provider, provision of inpatient cancer care, and more years in the profession.

Conclusion: OSWs are experiencing moral distress. Institutional investments in professional education and support of OSWs are needed to mitigate and possibly prevent moral distress experienced by cancer care providers and thus ensure the delivery of quality psychosocial care for patients with cancer and their families.
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http://dx.doi.org/10.1200/OP.21.00276DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8462654PMC
July 2021

Organizational and individual barriers and facilitators to the integration of pediatric palliative care for children: A grounded theory study.

Palliat Med 2021 09 5;35(8):1612-1624. Epub 2021 Jul 5.

Pediatric Hematology Oncology Department, Safra Children's Hospital, Sheba Medical Center, Ramat-Gan, Israel; Sackler School of Medicine, Tel Aviv University, Tel Aviv, Israel.

Background: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric oncology. A deeper understanding is needed of the influence of these barriers and the interactions between them, specifically in primary palliative care in hospital settings.

Aim: To identify the organizational and healthcare provider barriers to the provision of primary pediatric palliative care.

Design: This study utilized the grounded theory method. Semi-structured interviews were conducted and analyzed line by line, using NVivo software.

Setting/participants: Forty-six pediatric oncologists, nurses, psychosocial team members, and other healthcare providers from six academic hospital centers participated in the research.

Results: Organizational and healthcare provider factors were identified, each of which acted as both a barrier and facilitator to the provision of pediatric palliative care. Organizational barriers included lack of resources and management. Facilitators included external resources, resource management, and a palliative care center within the hospital. Individual barriers included attitudes toward palliative care among pediatric oncologists, pediatric oncologists' personalities, and the emotional burden of providing palliative care. Facilitators include dedication and commitment, initiative, and sense of meaning. Provider facilitators for palliative care had a buffering effect on organizational barriers.

Conclusion: Organizational and healthcare provider factors influence the quality and quantity of palliative care given to children and their families. This finding has implications on interventions structured to promote primary palliative care for children, especially in healthcare systems and situations where resources are limited.
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http://dx.doi.org/10.1177/02692163211026171DOI Listing
September 2021

Family Caregiver Partnerships in Palliative Care Research Design and Implementation.

Pediatrics 2021 07 8;148(1). Epub 2021 Jun 8.

Department of Nursing Science, Professional Practice and Quality, Children's National Hospital and Department of Pediatrics, School of Medicine and Health Sciences, George Washington University, Washington, District of Columbia.

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http://dx.doi.org/10.1542/peds.2020-049403DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8276591PMC
July 2021

Symptom screening via screen: Real-time electronic tracking of pediatric patient-reported outcomes.

Cancer 2021 Aug 4;127(16):2877-2879. Epub 2021 May 4.

Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland.

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http://dx.doi.org/10.1002/cncr.33614DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8319087PMC
August 2021

Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child.

Palliat Med Rep 2021 27;2(1):113-121. Epub 2021 Apr 27.

Department of Nursing Science, Professional Practice and Quality, Children's National Health System, Washington, DC, USA.

Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider behaviors. This study explored whether and how these beliefs are shaped by interactions with care providers and which provider behaviors foster or impede parents' ability to achieve their "good parent" definitions. A 63-item web-based survey distributed by an online support network for parents of medically complex children. Responses to closed- and open-ended questions from 67 caregivers based in the United States and Europe were analyzed. Respondents' medical decisions are driven by goals of (61%) and (18%). Almost half indicated that their personal "good parent" definition was impacted by provider behaviors or interactions with physicians or nurses. Although most parents reported wanting trusted care providers to ask them about their personal "good parent" definition, only 7% had ever been directly asked by members of their care teams about this topic. Provider behaviors such as kind and caring interactions, acknowledging the parents' role in caring for the child, and truly seeing the child as more than a diagnosis were reported as fostering caregivers' ability to achieve their "good parent" beliefs. The findings indicate that trusted provider-initiated conversations about "good parent" beliefs would be well received and are an opportunity to improve family-centered care. Care provider behaviors deemed by parents as supportive facilitate their efforts to achieve their "good parent" beliefs.
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http://dx.doi.org/10.1089/pmr.2021.0005DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8086518PMC
April 2021

The impact of COVID-19 on the professional and personal lives of pediatric oncology social workers.

J Psychosoc Oncol 2021 22;39(3):428-444. Epub 2021 Apr 22.

University of Texas, School of Social Work, Austin, TX, USA.

Purpose: Describe the impact of the COVID-19 pandemic on the work structure, daily care provided, personal lives, and practice models for pediatric oncology social workers (POSW).

Research Approach: Cross-sectional online survey on APOSW professional listserv from 10/5/2020 to 11/20/2020.

Sample: 101 surveys were completed by POSW from 31 states and the District of Columbia.

Methods: Data were summarized descriptively and with semantic content analyses.

Findings: Surveys were completed by social workers from diverse work settings. Seventy-five percent of social workers were deemed "essential," and 45% reported working primarily from home. Most (56%) adopted a form of telehealth for patient care, although 71% did not receive telehealth training and 87% perceived lesser quality of care with telehealth. Nearly 80% of respondents reported not being able to provide optimum psychosocial care. Notable stressors on social work practice included worry about exposure to COVID-19, limited resources, lack of contact with and increased emotional needs of patients and families, managing patient and family concerns about COVID-19, and isolation from colleagues. Inequity and social justice issues were identified. Despite challenges, over 60% of POSW endorsed positive changes to their work life resulting from the pandemic.

Conclusions/interpretation: As the COVID-19 pandemic persists, POSW have adapted to a changing work environment, different modes of service provision, and stark health inequities to meet the needs of patients and families in a crisis.

Implications For Psychosocial Providers: COVID-19 vastly impacted the personal and professional lives of POSW, warranting attentiveness to lessons learned and future directions.
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http://dx.doi.org/10.1080/07347332.2021.1912245DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8324039PMC
June 2021

Triggers for Palliative Care Referral in Pediatric Oncology.

Cancers (Basel) 2021 Mar 19;13(6). Epub 2021 Mar 19.

Department of Medicine, Johns Hopkins School of Medicine, Baltimore, MD 21218, USA.

Palliative care (PC) integration into the care of pediatric oncology patients is growing in acceptance and has been shown to improve the quality of life of children with cancer. Yet timing for referrals and referral practices remain inconsistent, and PC remains underutilized. We conducted a retrospective chart review of pediatric oncology patients treated at an academic institution between January 2015 to November 2018. Data collected included demographics, disease and therapy characteristics, and consultation notes, specifically documenting existence of predetermined "high yield triggers" for PC consultation. Among 931 eligible patients the prevalence of PC consultation was 5.6% while approximately 94% of patients had at least 1 trigger for PC consultation. The triggers that more often resulted in PC consultation included: symptom management needs (98%; = 51) high-risk disease (86%; = 45), poor prognosis (83%; = 43), multiple lines of therapy (79%; = 41) and a documented ICU admission (67%; = 35). Our findings suggest that the high yield triggers for palliative care consultation that pediatric oncologists identify as important are not translating into practice; incorporating these triggers into a screening tool may be the next step to improve early PC integration.
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http://dx.doi.org/10.3390/cancers13061419DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8003810PMC
March 2021

Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic.

J Pain Symptom Manage 2021 09 29;62(3):e91-e99. Epub 2021 Mar 29.

National Center for Ethics in Healthcare, Washington, District of Columbia, USA; Division of Pediatric Palliative Care, Children's Hospital and Medical Center, Omaha, Nebraska, USA.

Context: The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care.

Objective: Gaining understanding of the professional and personal experiences of PPC providers on a global scale during COVID-19 is essential to improve clinical practices in an ongoing pandemic.

Methods: The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus Survey-Global survey was designed and distributed to assess changes in PPC practices resulting from COVID-19. Quantitative and qualitative data were captured through the survey.

Results: One hundred and fifty-six providers were included in the final analysis with 59 countries and six continents represented (31% from lower- or lower middle-income countries). Nearly half of PPC providers (40%) reported programmatic economic insecurity or employment loss. Use of technology influenced communication processes for nearly all participants (91%), yet most PPC providers (72%) reported receiving no formal training in use of technological interfaces. Respondents described distress around challenges in provision of comfort at the end of life and witnessing patients' pain, fear, and isolation.

Conclusions: PPC clinicians from around the world experienced challenges related to COVID-19. Technology was perceived as both helpful and a hinderance to high quality communication. The pandemic's financial impact translated into concerns about programmatic sustainability and job insecurity. Opportunities exist to apply these important experiential lessons learned to improve and sustain care for future patients, families, and interdisciplinary teams.

Article Summary: This original article describes the impact of the COVID-19 pandemic on pediatric palliative care clinicians from 59 countries including financial losses, use of virtual communication modalities, and the respondents' distress in provision of comfort at the end of life.
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http://dx.doi.org/10.1016/j.jpainsymman.2021.03.016DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8007190PMC
September 2021

Stuck Moments and Silver-Linings: The Spectrum of Adaptation Among Non-Bereaved and Bereaved Parents of Adolescents and Young Adults With Advanced Cancer.

J Pain Symptom Manage 2021 10 26;62(4):709-719. Epub 2021 Mar 26.

Palliative Care and Resilience Lab (K.S.B.), Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington.

Context: With advances in treatments that have resulted in children living longer with serious illness, it is essential to understand how parents adapt to changes during the final stages of their child's life or after their child's death.

Objective: To examine the process by which parents adapt to their child's serious illness and death among a group of non-bereaved and bereaved parents of adolescents and young adults (AYAs) with advanced cancer.

Methods: Qualitative study exploring the experiences of parents of AYAs who were being treated for recurrent or refractory advanced cancer (nonbereaved parents) or had died from their disease (bereaved parents) at one large academic center. Participants completed demographic surveys and semi-structured interviews to better understand parent adaptation. Data were analyzed using content and thematic approaches.

Results: Of the 37 participating parents; 22 (59%) were non-bereaved and 15 (41%) were bereaved. The AYAs predominantly had hematologic malignancies (n = 18/34, 53%). Across both cohorts, parents described the process of adapting to their child's worsening health or death as moments of feeling stuck and moments of gratitude and meaning.

Conclusion: Adaptation to a child's serious illness and death likely occurs on a dynamic spectrum and parents may oscillate both cognitively and emotionally. This has important implications for how clinicians and communities support parents. Greater comfort with and normalization of the adaptation process may enable parents to more openly share both the unimaginable hardships and unexpected silver-linings that are part of their parenting experiences during their child's illness and death.
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http://dx.doi.org/10.1016/j.jpainsymman.2021.03.015DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8464607PMC
October 2021

Six months in: COVID-19 and its impact on oncology social work practice.

J Psychosoc Oncol 2021 10;39(3):461-468. Epub 2021 Mar 10.

National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, MD, USA.

The extent to which oncology social workers (OSWs) are available and adapting to disruptions in service delivery throughout the COVID-19 pandemic is unknown. The purpose of this report is to outline the initial impact of COVID-19 on oncology social work practice during the first six months of the pandemic. As part of a nationwide investigation of workforce conditions for OSWs, three professional organizations surveyed their members to assess the effects of COVID-19 on changes to work hours, employment status, work setting, pay, and mode for patient contact (e.g., telephone or videoconference). Among 939 OSWs, 20% reported a reduction in work hours, and two-thirds indicated a temporary shift in work to home, with most patient contact occurring primarily via telephone or videoconference. Results speak to the essential nature of oncology social work and the need for evidence to inform OSW training and advocacy efforts for however long the pandemic continues.
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http://dx.doi.org/10.1080/07347332.2021.1893421DOI Listing
June 2021

Navigating the terrain of moral distress: Experiences of pediatric end-of-life care and bereavement during COVID-19.

Palliat Support Care 2021 04;19(2):129-134

Division of Pediatric Palliative Care, Children's Hospital and Medical Center, Omaha, NE.

Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers' moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC).

Method: The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs.

Results: A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents' depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic.

Significance Of Results: The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.
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http://dx.doi.org/10.1017/S1478951521000225DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7985909PMC
April 2021

End of life communication among caregivers of children with cancer: A qualitative approach to understanding support desired by families.

Palliat Support Care 2021 Mar 1:1-8. Epub 2021 Mar 1.

Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD.

Objectives: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer.

Methods: Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis.

Results: Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support.

Significance Of Results: Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.
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http://dx.doi.org/10.1017/S1478951521000067DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8408277PMC
March 2021

Beyond the storm - subacute toxicities and late effects in children receiving CAR T cells.

Nat Rev Clin Oncol 2021 06 25;18(6):363-378. Epub 2021 Jan 25.

Pediatric Oncology Branch, Center for Cancer Research, NCI, NIH, Bethesda, MD, USA.

As clinical advances with chimeric antigen receptor (CAR) T cells are increasingly described and the potential for extending their therapeutic benefit grows, optimizing the implementation of this therapeutic modality is imperative. The recognition and management of cytokine release syndrome (CRS) marked a milestone in this field; however, beyond the understanding gained in treating CRS, a host of additional toxicities and/or potential late effects of CAR T cell therapy warrant further investigation. A multicentre initiative involving experts in paediatric cell therapy, supportive care and/or study of late effects from cancer and haematopoietic stem cell transplantation was convened to facilitate the comprehensive study of extended CAR T cell-mediated toxicities and establish a framework for new systematic investigations of CAR T cell-related adverse events. Together, this group identified six key focus areas: extended monitoring of neurotoxicity and neurocognitive function, psychosocial considerations, infection and immune reconstitution, other end organ toxicities, evaluation of subsequent neoplasms, and strategies to optimize remission durability. Herein, we present the current understanding, gaps in knowledge and future directions of research addressing these CAR T cell-related outcomes. This systematic framework to study extended toxicities and optimization strategies will facilitate the translation of acquired experience and knowledge for optimal application of CAR T cell therapies.
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http://dx.doi.org/10.1038/s41571-020-00456-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8335746PMC
June 2021

Oncologist conceptualizations of pediatric palliative care: challenges and definitions.

Support Care Cancer 2021 Jul 3;29(7):3981-3989. Epub 2021 Jan 3.

Pediatric Hematology Oncology Department, Safra Children's Hospital, Sheba Medical Center, Ramat-Gan, Israel.

Purpose: Pediatric palliative care (PC) is an evolving field and involves a comprehensive approach to care of children with cancer. The goal of this paper was to explore how pediatric oncologists define, interpret, and practice pediatric palliative care in their clinical settings.

Methods: The study used the grounded theory approach to data collection and analysis. Twenty-one pediatric oncologists from six pediatric cancer centers across Israel were interviewed. Data was analyzed using line-by-line coding.

Results: The analysis resulted in a four-tiered conceptual model. This model included the following categories: (1) ill-defined concept; (2) philosophies of palliative care; (3) trajectory of palliative care; and (4) palliative care treatment goals.

Conclusion: The findings illustrate the current conceptualizations of pediatric palliative care among the pediatric oncology community in Israel. The conceptual model documents their understanding of pediatric palliative care as a philosophical approach and the challenges they face in differentiating between palliative care and standard pediatric oncology care. Pediatric palliative care is a highly needed and valued sub-specialty. The findings from this study highlight the importance for its continued development in Israel, as it can reduce the suffering of children and their families. Concurrently, pediatric oncologists need to have more resources and access to explicit knowledge of the conceptual and practical aspects of both primary and specialized pediatric palliative care.
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http://dx.doi.org/10.1007/s00520-020-05959-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8164966PMC
July 2021

Impact of the Coronavirus Pandemic on Pediatric Palliative Care Team Structures, Services, and Care Delivery.

J Palliat Med 2021 08 21;24(8):1213-1220. Epub 2020 Dec 21.

Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, Maryland, USA.

Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Cross-sectional online surveys were posted on seven professional Listservs from May 2020 to June 2020. Data were summarized descriptively and with semantic content analyses.  = 207 surveys were completed by pediatric palliative program representatives from 80 cities, inclusive of physicians, nurses, child life, social workers, chaplains, and psychologists. Teams consulted on <20% of potential or presumed COVID-19 cases in their centers. Sixty percent of personnel were deemed "essential" during the pandemic. One-third of personnel remained in their usual work locale, with some shifting to support adult palliative services and others working remotely. Over 60% reported a sense of team "distance" compared with "close" team cohesion, associated with physical location of team members ( < 0.01) and frequency of team counseling, education, or support meetings ( < 0.02). All programs adopted a form of telehealth for patient care, although 41% did not receive telehealth training and 73% perceived unequal care quality with virtual care. Absence of pediatric patients' family members due to visitation policies, missing human presence and physical touch, concern for personal and colleague health, and fear of financial sustainability for programs were notable stressors. While the number of children diagnosed with COVID-19 receiving hands-on care from pediatric palliative care teams was reportedly low, the coronavirus pandemic vastly impacted pediatric palliative care team structure, daily services, and communication models warranting attentiveness to lessons learned and future direction.
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http://dx.doi.org/10.1089/jpm.2020.0589DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8309395PMC
August 2021

Impact of the Coronavirus Pandemic on Pediatric Palliative Care Team Structures, Services, and Care Delivery.

J Palliat Med 2021 08 21;24(8):1213-1220. Epub 2020 Dec 21.

Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, Maryland, USA.

Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Cross-sectional online surveys were posted on seven professional Listservs from May 2020 to June 2020. Data were summarized descriptively and with semantic content analyses.  = 207 surveys were completed by pediatric palliative program representatives from 80 cities, inclusive of physicians, nurses, child life, social workers, chaplains, and psychologists. Teams consulted on <20% of potential or presumed COVID-19 cases in their centers. Sixty percent of personnel were deemed "essential" during the pandemic. One-third of personnel remained in their usual work locale, with some shifting to support adult palliative services and others working remotely. Over 60% reported a sense of team "distance" compared with "close" team cohesion, associated with physical location of team members ( < 0.01) and frequency of team counseling, education, or support meetings ( < 0.02). All programs adopted a form of telehealth for patient care, although 41% did not receive telehealth training and 73% perceived unequal care quality with virtual care. Absence of pediatric patients' family members due to visitation policies, missing human presence and physical touch, concern for personal and colleague health, and fear of financial sustainability for programs were notable stressors. While the number of children diagnosed with COVID-19 receiving hands-on care from pediatric palliative care teams was reportedly low, the coronavirus pandemic vastly impacted pediatric palliative care team structure, daily services, and communication models warranting attentiveness to lessons learned and future direction.
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http://dx.doi.org/10.1089/jpm.2020.0589DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8309395PMC
August 2021

Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey.

Children (Basel) 2020 Dec 1;7(12). Epub 2020 Dec 1.

Department of Nursing Science, Professional Practice & Quality, Children's National Health System, Washington, DC 20010, USA.

Background: Parents of children with complex medical needs describe an internal, personal definition of "trying to be a good parent" for their loved child. Gaps exist in the current "good parent concept" literature: (1) When the idea of "trying to be a good parent" comes into existence for parents, (2) How parents' definition of "being a good parent" may change over time and may influence interactions with the child, and (3) Whether parents perceive attainment of their personal definition.

Aim: The purpose of this study was to explore these current gaps in the "good parent concept" knowledge base from the perspective of parents of children with chronic or complex illness.

Materials And Methods: These themes were explored through a 63-item, mixed-method web-based survey distributed by the Courageous Parents Network (CPN), an organization and online platform that orients, educates, and empowers families and providers caring for seriously ill children.

Results: The term "trying to be a good parent" resonated with 85% of the 67 responding parents. For the majority of parents, the concept of "being a good parent" started to exist in parental awareness before the child's birth (70.2%) and evolved over time (67.5%) to include less judgment and more self-compassion. Parents identified their awareness of their child's prognosis and changing health as influential on their "trying to be a good parent" concept. Parental advocacy, child's age, and duration of illness were reported as influencing parental perceptions of having achieved their definition of "being a good parent".

Conclusions: Familiarity with parental perspectives on their parenting goodness and goals is a necessary core of family-centric health care.
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http://dx.doi.org/10.3390/children7120265DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7760659PMC
December 2020

Exploring the Impact of the Coronavirus Pandemic on Pediatric Palliative Care Clinician Personal and Professional Well-Being: A Qualitative Analysis of U.S. Survey Data.

J Pain Symptom Manage 2021 04 30;61(4):805-811. Epub 2020 Sep 30.

Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, Maryland, USA.

Context: The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians.

Objective: We aimed to describe the pandemic's impact on pediatric palliative care clinicians' personal and professional well-being.

Methods: The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus (PANDEMIC) cross-sectional online survey was posted on 7 professional listservs between May and June 2020. We conducted a conventional content analysis of written responses to three open-ended questions regarding the lasting impact of COVID-19.

Results: Of 207 multidisciplinary respondents from 80 US cities, 148 (71%) provided written responses to open-ended questions, and 62 responses (42%) were related to personal, professional, or existential well-being. These responses were sorted into 4 major categories: personal burdens, professional burdens, personal benefits, and professional benefits. Respondents described burdens more commonly than they did benefits (67% vs. 33% of comments, respectively). Personal burdens related to increased fear and uncertainty, fear of bringing the virus home, and a sense of collective grief. Professional burdens included a sense of exhaustion, a challenge with work-life balance, personal experiences with colleagues infected with the virus, and considerations of leaving health care altogether. Personal benefits included lessons learned, an evolving sense of what matters, and improved work-life balance. Professional benefits included opportunities for professional development and a sense of professional purpose.

Conclusion: Pediatric palliative care clinicians perceive a breadth of impacts from the COVID-19 pandemic. Ongoing clinician assessment is important as the pandemic continues.
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http://dx.doi.org/10.1016/j.jpainsymman.2020.09.037DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7525352PMC
April 2021

Weaver et al's Response to Morrison: Advance Directives/Care Planning: Clear, Simple, and Wrong (DOI: 10.1089/jpm.2020.0272).

J Palliat Med 2021 01 31;24(1):8-10. Epub 2020 Aug 31.

Children's National Hospital/Center for Translational Science and George Washington School of Medicine and Health Sciences, Washington, DC, USA.

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http://dx.doi.org/10.1089/jpm.2020.0486DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7757698PMC
January 2021

Bereavement risk screening: A pathway to psychosocial oncology care.

Psychooncology 2020 12 3;29(12):2041-2047. Epub 2020 Oct 3.

Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, New York, USA.

Objective: This qualitative study sought to obtain feedback from stakeholder cancer caregivers and bereaved family members on the implementation of bereavement risk screening in oncology.

Methods: Semi-structured interviews were conducted with 38 family members of patients with advanced cancer (n = 12) and bereaved family members (n = 26) on when and how to effectively implement bereavement risk screening. Data were analyzed using thematic analysis.

Results: Many participants indicated that they would be open to completing a self-report screening measure before and after the patient's death. Several suggested screening at multiple timepoints and the importance of follow-up. Participants viewed screening as an opportunity to connect to psychosocial support.

Conclusions: The findings suggest that family members appear supportive of sensitively approached bereavement risk screening before and after a patient's death as an important component of quality psychosocial care. To optimize implementation, bereavement risk screening would involve screening at multiple timepoints and include follow-up. Findings suggest standardized risk screening using a brief, validated self-report tool would be a pragmatic approach to increasing access to bereavement care.
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http://dx.doi.org/10.1002/pon.5526DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8284092PMC
December 2020

Pediatric Psychosocial Standards of Care in action: Research that bridges the gap from need to implementation.

Psychooncology 2020 12 21;29(12):2033-2040. Epub 2020 Oct 21.

Inova Schar Cancer Institute, Life with Cancer, Fairfax, Virginia, USA.

Objective: To describe innovative models of psychosocial care delivery that align with published Standards of Psychosocial Care of Children with Cancer and their Families, in efforts to bridge the divide between research and practice.

Methods: The Mattie Miracle Cancer Foundation, in partnership with the American Psychosocial Oncology Society reviewed 22 letters of intent and 13 full grants and awarded small grants to researchers with high quality projects that aimed to implement any of the published 15 Standards of Care. For three of the highest rated funded research projects, we describe the Standard implemented, the novel research design and implementation strategies, and how the research findings might inform the development, implementation, and dissemination of effective solutions for bridging Standard-to-practice gaps.

Results: The first study presented is an innovative eHealth intervention for parents of children with cancer designed to improve family functioning and decrease symptoms of acute distress, anxiety, and posttraumatic stress. The second study addresses the acceptability and feasibility of using daily text message assessments of oral chemotherapy adherence in adolescents and young adults with leukemia, and the third creates a blueprint for providing psychosocial services to siblings, including ways to overcome common implementation barriers.

Conclusions: Several themes emerged from the studies presented, including (1) attention to barriers to previous attempts at implementation; (2) technology's role in delivering care; (3) the need for stakeholder involvement; and (4) consideration for multi-pronged solutions that address heterogeneity in care settings. Next steps for integrating the Standards of Psychosocial Care into clinical practice are discussed.
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http://dx.doi.org/10.1002/pon.5505DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8447234PMC
December 2020

Initiating Palliative Care Referrals in Pediatric Oncology.

J Pain Symptom Manage 2021 01 22;61(1):81-89.e1. Epub 2020 Jul 22.

Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, USA; Johns Hopkins School of Medicine, Baltimore, Maryland, USA.

Context: Early palliative care (PC) has been shown to improve the quality of life of children with cancer, yet referral practices by pediatric oncology providers remains inconsistent and few patients receive a formal PC consult.

Objectives: We sought to describe patient characteristics used by oncologists for PC referral and identify ways to improve PC integration into the care for children with cancer.

Methods: This mixed-methods study used semistructured audiotaped interviews to explore the patient or disease characteristics used by pediatric oncology providers to trigger PC referral. Conventional content analysis was applied to interview transcripts.

Results: About 77 participants with diverse experience were interviewed. More than 75% of participants reported that PC was consulted too late and cited communication and systems issues as the top barriers. Most participants (85%) stated that a screening tool would be helpful to standardize referral practices to PC. Characteristics such as poor prognosis (88%), symptom management (86%), comorbidities (65%), and psychosocial needs (65%) were commonly reported triggers that should initiate PC consultation. However, when presented with case scenarios that included these characteristics, participants did not consistently identify the PC triggers. Nearly 50% of participants stated they had received some formalized PC training; however, only one-third of these participants noted completing a PC rotation.

Conclusion: Our findings suggest that pediatric oncologists are committed to improving the integration of PC for their patients and that standardization of referral practices, through the use of a screening tool, would be of benefit. Additional PC education might reinforce pediatric oncologists' recognition of PC triggers.
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http://dx.doi.org/10.1016/j.jpainsymman.2020.07.008DOI Listing
January 2021

Tools to guide the identification and implementation of care consistent with the psychosocial Standards of care.

Pediatr Blood Cancer 2020 09 18;67(9):e28586. Epub 2020 Jul 18.

Life with Cancer, Inova Schar Cancer Institute, Inova Health System, Fairfax, Virginia.

Fifteen evidence-based Standards of psychosocial care for children with cancer and their families have been established. Despite the importance of implementing the standards, significant barriers and challenges exist. In order to overcome barriers to implementation and assess the level of current psychosocial care, a model of evaluating psychosocial care (Matrix) and a set of pathways toward achieving optimal care (Guidelines) were developed. This special report describes the process involved in the creation of standard templates and development of content based on rigorous reviews from multidisciplinary psychosocial experts, focus groups, and multiple revisions based on further expert review. The resulting Matrix and Guidelines are included as Supplemental Information.
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http://dx.doi.org/10.1002/pbc.28586DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7713757PMC
September 2020

Factors influencing loneliness in cancer caregivers: A longitudinal study.

Psychooncology 2020 11 18;29(11):1794-1801. Epub 2020 Sep 18.

National Institutes of Health (NIH) Clinical Center, Bethesda, Maryland, USA.

Objective: To describe levels of loneliness in cancer caregivers over a 6 month time period, and to examine factors that influence changes in loneliness in caregivers over time.

Methods: Prospective, repeated measures design was utilized to examine levels of loneliness and factors that influence loneliness in 129 family caregivers of individuals undergoing cancer treatment at three time points over a 6 month period. Measures included: PROMIS global health and sleep disturbance; NIH Toolbox loneliness, self-efficacy and perceived stress; Family Care Inventory mutuality scale; and Caregiver Reaction Assessment.

Results: Approximately one third (30.2%, n = 39) of the caregivers had high levels of loneliness, and levels of loneliness did not change over the three time points (P = .985). For any given time point, caregivers who were not married (P = .008), not working (P = .027), with worse mental health (P = .015), more perceived-stress (P < .0001), and more caregiver burden (P = .003) reported higher levels of loneliness.

Conclusion: This study provides guidance for clinicians attempting to identify at-risk caregivers by confirming the findings of previous research that caregivers with higher burden, stress and in poor mental health are at increased risk for loneliness. This study provides preliminary evidence that continuing to work during the caregiving trajectory may be beneficial to caregivers by reducing levels of loneliness. Future research is needed to confirm these findings and to examine novel interventions to reduce loneliness in cancer caregivers.
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http://dx.doi.org/10.1002/pon.5477DOI Listing
November 2020
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