The Development of a Multidisciplinary Support Network to Support Hospitalized Pediatric Patients, Their Families, and Hospital Staff During the COVID-19 Pandemic.

Background: The COVID-19 pandemic led to emotional and behavioral challenges for hospitalized pediatric patients, their families, and staff. Visitor restrictions, closure of patient lounges and playrooms, masking requirements, and enhanced isolation rules resulted in limited access to typical sources of psychosocial support during this traumatic event. Complementary and integrative health therapies such as acupuncture and related therapies are well suited to provide the humanitarian support patients and families need during times of crisis. Objective: The Multidisciplinary Support Network (i.e., Network) was formed to redesign the delivery of acupuncture and other integrative therapies alongside psychosocial support for hospitalized children, their families, and staff. Intervention: Network members represented a broad range of previously siloed disciplines including integrative therapies, art therapy, child life, nursing, pastoral care, adolescent medicine, pediatric hospital medicine, psychology, and child and adolescent psychiatry. The Network aimed to identify gaps in service and create resources to support children and families during this challenging time. Results: The Network compiled existing complementary and integrative services, provided training on integrative therapies to staff, pediatric trainees, and faculty, developed the Comfort Box containing items to provide symptom relief including pain, anxiety and difficulty sleeping, as well as closed-circuit programming, a pediatric companionship program connecting medical student volunteer companions with pediatric patients, and a well-being workbook. Conclusion: Collaborative teamwork across disciplines using integrative therapies was key to humanitarian efforts to support hospitalized children and their families during this crisis.

Pediatric Consultation-Liaison Psychology: Insights and Lessons Learned During the COVID-19 Pandemic.

COVID-19 has presented a variety of challenges to the provision of psychology services. In the first month of the pandemic, pediatric consultation-liaison (CL) psychologists reported significant changes in methodology of service delivery (Steinberg et al. in Clin Pract Pediatr Psychol 9:1, 2020). To better understand how and if these changes persisted, as well as other emerging trends, a follow-up study examined changes and challenges six months into the pandemic. An anonymous questionnaire assessed topics related to pediatric CL psychology including practice changes, perception of changes, and institutional support. The questionnaire was sent to the APA Society of Pediatric Society's special interest group listservs. Thirty responses were analyzed. Quantitative results showed participants' beliefs that telemedicine is equally efficacious to in-person services for outpatient psychological care, but less effective for inpatient care. Participants reported their perception of how institutions supported their safety, psychology trainee safety and training goals, and patient care. Qualitative results demonstrated that most psychologists experienced changes related to their dynamics with medical teams, which included changes in team efficiency, workload, transition, and team collaboration.

Back to School: Parental Concerns of Children with Hematological and Oncological Conditions During the COVID-19 Pandemic.

The Coronavirus Disease 2019 (COVID-19) pandemic has significantly affected the educational system. Historically, children with hematological and oncological conditions have experienced academic challenges. A retrospective chart review was conducted. Charts reviewed included children with oncology or hematology conditions, whose parents expressed educational concerns and were referred to an educational liaison in the Pediatric Hematology, Oncology, and Stem Cell Transplantation Division. The parental concerns for 102 children (M age = 10.03 ± 4.7; 59.8% male; 43.1% Latinx/Hispanic) during the first half of the 2021 to 2022 academic year were extracted. Overall, all parents reported at least one concern with the average reporting 2.24 ± 1.34 (range of 1-6 concerns). The most common general concerns regarded: Individualized Education Programs (IEP) or special education evaluations; 504 accommodations; home instruction; school enrollment. Almost half of the parents had additional concerns they specifically attributed to COVID-19. Children with hematological and oncological conditions were experiencing various needs at this time, which likely have continued implications. It is important for educators, school psychologists, and health care providers to remain cognizant of the educational needs of medically vulnerable populations. Children with hematological and oncological conditions benefit from regular evaluation of their needs, as well as proactive forms of intervention.

Adolescents and Young Adults with Cancer: Survivorship and Special Considerations.

Adolescents and young adults (AYAs) who have cancer face a distinct set of challenges beginning during the initial diagnosis, extending throughout treatment, and continuing into survivorship. Owing to significant strides made in cancer therapy in recent decades, more than 80% of this group will go on to become long-term survivors. Despite these improvements, however, many AYAs continue to have poorer outcomes when compared with older and younger patients. The purpose of this article is to underscore the unique set of multifaceted obstacles that this vulnerable group encounters and to pinpoint critical areas of attention and intervention throughout the health care journey. Moreover, it aims to highlight the importance of the role of the primary care provider as a constant partner in safeguarding the long-term physical and mental health of this diverse population within a complex and, at times, trying health care system. [Pediatr Ann. 2022;51(1):e27-e33.].

Provider and staff crisis well-being associated with trust in leadership and baseline burnout.

BACKGROUND: The impact of the coronavirus 2019 (COVID-19) pandemic on the emotional health of health care workers continues to be an area of active research. However, few studies have focused on those working in pediatrics and its subspecialties, as well as ancillary and non-patient-facing staff. The purpose of this study was to determine the prevalence and associated predictors of burnout and emotional well-being of providers and staff. METHODS: An anonymous electronic survey was developed evaluating demographics, pandemic experiences, possible predictor variables, and three main outcomes of burnout, psychological distress, and perceived stress. Pediatric hematology oncology (PHO) chiefs and program directors across the country were invited to participate and disseminate the survey to their programs. RESULTS: A total of 682/1950 (35% of invited) individuals responded to all predictor and outcome variables. Over half reported high levels of burnout and some reported moderate/high levels of distress. Prepandemic burnout and decreased trust in leadership were associated with all three outcomes. Additional predictors included having a child ≤18 years at home, hospital role, and worrying about patient care or relationship with their patients. The majority (n = 444/682, 65.5%) reported that their institution had made COVID-19-related mental health resources available. However, only 6.5% (n = 44/682) reported utilizing these resources. CONCLUSIONS: While the majority of PHO providers and staff were resilient during the early stages of the COVID-19 pandemic, many reported high levels of burnout, yet few are utilizing institutional resources. This study has highlighted several actionable areas to help identify and address factors that are wearing down the emotional well-being of providers and staff.

Well-Being of Pediatric Hematology Oncology Providers and Staff During the COVID-19 Pandemic in the New York and New Jersey Epicenter.

PURPOSE: The COVID-19 pandemic has significantly affected the well-being of healthcare workers to varying degrees. The aim of the current study was to investigate how the pandemic has affected the burnout, stress, and emotional well-being of pediatric hematology oncology (PHO) providers and staff in the New York and New Jersey epicenter. METHODS: The study was conducted in June 2020 during the pandemic through an electronic survey. The survey contained questions surrounding demographics, pandemic experiences, and validated burnout, stress, and emotional well-being measures. RESULTS: Two hundred fifty-two PHO providers and staff responded to the survey. Overall, half of the participants reported high levels of burnout, average stress scores were in the mild-moderate range, and the majority scored in the none-to-mild symptomatology range for their well-being. Self-reported burnout levels before the pandemic and geographic work location were statistically significant risk factors for all outcomes. Additional predictors for some outcomes included hospital role, lack of trust in leadership, and deployment. The majority of participants (87.0%) reported that their hospitals had made mental health resources related to COVID-19 available to them but only 8.4% reported having used them. CONCLUSION: PHO providers and staff in the NYC/NJ area are experiencing a range of emotional experiences during the COVID-19 pandemic, but the majority are not using current resources. With the continuation of the pandemic, we must continue efforts to improve provider and staff distress to mitigate the degree of potential negative short-term and long-term impact.

"I've Weathered Really Horrible Storms Long Before This ": The Experiences of Parents Caring for Children with Hematological and Oncological Conditions during the Early Months of the COVID-19 Pandemic in the U.S.

The societal impact of COVID-19 is vast, thus it is imperative to understand how vulnerable groups, such as children with chronic medical conditions are affected. This understanding can prepare psychologists and other healthcare providers to meet their current and future needs. A convenience sample of 11 parents of children with hematological/oncological conditions was recruited. They participated in semi-structured interviews on the effect of the COVID-19 pandemic on their children. Qualitative analysis identified common themes. Parental responses focused on the pandemic's impact on children's general daily life and healthcare. Themes of caution, uncertainty, adaptation, and the role of the healthcare providers and early medical experiences emerged. Concerns about vulnerability, changes in routine, the importance of virtual connections, and the pivotal role of providers have implications for children with and without medical conditions. The adaptation and resilience of the families provide a sense of hope in an uncertain time.

Social isolation and connection in adolescents with cancer and survivors of childhood cancer: A systematic review.

INTRODUCTION: Cancer may cause significant disruptions in normal adolescent development particularly in social domains. Both treatment and survivorship pose challenges to fostering social connections. To better understand these challenges, we conducted a systematic literature review of the experience of social isolation and connectedness in adolescents with cancer and adolescent survivors of childhood cancer. METHODS: A systematic review of the scientific literature was conducted following PRISMA Guidelines. Eligible articles included original peer-reviewed research published in English between January 2000 and April 2020 that reported on social domains of patients and survivors of cancer between the ages of 10-21. Initial database search identified 4606 articles with 43 studies meeting inclusion criteria. RESULTS: Results were synthesized into four domains: (1) the prevalence of connectedness/isolation; (2) risk factors associated with social isolation; (3) protective factors against social isolation; (4) the impact of social isolation on psychological health. Overall, adolescent patients and survivors of cancer have satisfactory social connectedness. However, certain subgroups including those with central nervous system tumors are at higher risk of social isolation. CONCLUSIONS: In general, adolescent cancer patients and survivors report levels of social connectedness consistent with healthy adolescent population norms. The risk and protective factors identified in this review may help serve as important indicators for psychosocial screening and interventions. These findings are particularly relevant in the COVID-19 era as all adolescents face challenges to social connections and psychosocial development.

Short report: sticks and stones may break my bones, but words can also hurt me: understanding language interpreters' perceptions of stress/growth and needs in a pediatric medical setting.

An increased focus on quality, trauma-informed patient care also warrants examination of providers' experiences of stress in medical settings. However, little is known about language interpreters' experiences of stress in the pediatric hospital setting, despite their involvement in acute and difficult patient encounters. This pilot study evaluated language interpreters' experiences and perceptions of stress in a large children's hospital. Descriptive and qualitative analyses, using a novel survey measure of interpreters' experiences, were performed to evaluate language interpreters' experiences with stressful patient encounters and identification of available and desired supports. All interpreters surveyed endorsed experiencing stress during challenging patient encounters in the hospital, though the majority also identified positive changes to their worldview as a result of their work. Results highlighted interpreters' strategies to cope with stress and perceived institutional needs to manage stressful encounters. Interpreters' experiences of stress in the pediatric hospital underscores needs for prevention and intervention efforts aimed at helping interpreters manage job-related stress. Preliminary, trauma-informed recommendations for working with and supporting interpreters are proposed.

"It Made Me the Person I Am Today ": Survivors of Childhood, Adolescent, and Young Adult Cancer Reflect on Their Experiences.

Purpose: As survival rates of childhood, adolescent, and young adult (YA) cancers improve, there is a growing population of YA cancer survivors who can provide insight into the lived experience of cancer. The goal of this study was to improve understanding of the cancer experience through interviews with YA-aged survivors. Methods: A convenience sample of survivors (age ≥18; remission ≥5 years) was recruited from an urban pediatric hospital. Participants responded to demographic questions, open-ended questions about cancer experience, and optional verbal interview. Responses to questions (written and verbal) were transcribed and coded using thematic analysis to identify common themes. Results: Participants were 18 cancer survivors (M age = 22.17 ± 3.96, 50% male, 33.3% Latino/Hispanic). The main themes reported were as follows: (1) importance of mind-set (reported by 94% of participants); (2) positive transformation (61%); (3) importance of support from medical team (61%); (4) importance of social support (56%); and (5) burden of cancer (44%). Conclusions: Themes of resilience and optimism were pervasive throughout responses. YA-aged survivors were both proponents of adapting a positive mind-set when undergoing treatment, and appeared to maintain this positive mind-set into survivorship by describing cancer as a transformative experience. Cognition, positive change, and social support, are all concepts that could be addressed through targeted screenings and interventions. Fostering a positive lens may help with overall adjustment and mood during treatment, and be protective for physical and mental health.

Bridging the Gap: A Pilot Program to Understand and Meet the Needs of Pediatric Patients and Families as They Transition Off Cancer-Directed Therapy.

Background: With improved curative therapies, over 80% of children and adolescent/young adults diagnosed with cancer are expected to live into adulthood. This population is at risk for increased morbidity and early mortality and requires ongoing health care and surveillance for late effects of treatment. This pilot study assessed the acceptability of a structured medical visit at the completion of cancer-directed therapy as well as patient/family's knowledge of diagnosis and other aspects of care. Method: Patients/families who were 0 to 6 months from completion of cancer-directed therapy attended a one-time transition visit during which they completed a series of questionnaires assessing knowledge about diagnosis, treatment, potential late effects, and duration of ongoing care. They were then given treatment summaries, a plan for follow-up care, information about care after treatment as well as late effects. They completed a questionnaire to assess their satisfaction with this visit. Results: The majority of patients/families knew their diagnosis and treatment modalities. Less knew that their treatment put them at risk for cardiac toxicity or problems with future fertility. A significant number thought follow-up care would continue for only 5 years. Overall participants were satisfied with the visit. Conclusion: The transition period from on to off therapy may be a critical time point to provide patients with cancer and their families with information regarding treatment, follow-up care and testing, and potential late effects. Future studies should assess if this intervention improves compliance with recommended care and surveillance, and improved outcomes.

Positive Well-Being in Youth With Type 1 Diabetes During Early Adolescence.

Developmental shifts during early adolescence relate to type 1 diabetes (T1D) self-management, increased risk of emotional distress, and worsening health status. Less is known about positive experiences related to T1D. This study evaluated associations of positive well-being (PWB) with diabetes burden, self-management, and glycemic control. Youth (N = 55, age = 12-13 years; X̄ age = 12.75 + 0.56 years, 50.9% male, 38.2% non-Caucasian) reported PWB, depressive symptoms, and diabetes burden. Parents reported on overall T1D adherence. Adherence behaviors and glycemic control were assessed objectively. Higher PWB correlated with lower depressive symptoms (r s = -.45), less diabetes burden (r s = -.48), and better glycemic control (r s = -.43), all p < .01. When controlling for diabetes duration, higher PWB correlated with lower depressive symptoms and better glycemic control. PWB was not related to demographics or adherence. Initial exploration suggests PWB is related to key diabetes constructs, and maybe valuable to consider along with efforts to support youth with T1D during a vulnerable developmental period.

Asthma in children of Caribbean descent living in the inner-city: comparing Puerto Rican and Afro-Caribbean children.

Ethnic minority children bear a disproportionate amount of the US asthma burden. We compared asthma morbidity and pulmonary function (%FEV1) in two Caribbean groups living in the Bronx, NY: Puerto Rican and Afro-Caribbean children. Caregiver-child dyads (Puerto Rican: n = 113, M age = 9.89 ± 2.05; Afro-Caribbean: n = 47, Mage = 10.35 ± 2.08) responded to sociodemographic and asthma-related questions, and children's %FEV1 was measured. Puerto Rican children had significantly greater (past year) asthma morbidity, yet there were no significant differences in %FEV1. This discrepancy between objective pulmonary function and asthma morbidity suggests the importance of considering sociocultural factors in pediatric asthma care.

Psychological treatment of comorbid asthma and panic disorder in Latino adults: Results from a randomized controlled trial.

Confusion between panic and asthma symptoms can result in serious self-management errors. A cognitive behavior psychophysiological therapy (CBPT) intervention was culturally adapted for Latinos consisting of CBT for panic disorder (PD), asthma education, differentiation between panic and asthma symptoms, and heart rate variability biofeedback. An RCT compared CBPT to music and relaxation therapy (MRT), which included listening to relaxing music and paced breathing at resting respiration rates. Fifty-three Latino (primarily Puerto Rican) adults with asthma and PD were randomly assigned to CBPT or MRT for 8 weekly sessions. Both groups showed improvements in PD severity, asthma control, and several other anxiety and asthma outcome measures from baseline to post-treatment and 3-month follow-up. CBPT showed an advantage over MRT for improvement in adherence to inhaled corticosteroids. Improvements in PD severity were mediated by anxiety sensitivity in CBPT and by depression in MRT, although earlier levels of these mediators did not predict subsequent improvements. Attrition was high (40%) in both groups, albeit comparable to CBT studies targeting anxiety in Latinos. Additional strategies are needed to improve retention in this high-risk population. Both CBPT and MRT may be efficacious interventions for comorbid asthma-PD, and CBPT may offer additional benefits for improving medication adherence.

The relationship between caregivers' post-traumatic stress disorder and their asthma health beliefs in an ethnic minority inner-city sample.

OBJECTIVE: Caregivers' asthma health beliefs can impact healthcare decisions. This study aimed to determine whether caregivers with a diagnosis of post-traumatic stress disorder (PTSD) had asthma illness representations less aligned with the professional model of asthma management and whether their children had worse asthma control. METHODS: Participants were 120 children with asthma (age M = 9.25 ± 1.37) and their caregivers recruited from the Bronx, NY, USA. Participants were Puerto Rican (n = 55), African-American (n = 30), Afro-Caribbean (n = 22), and Mexican (n = 13). Caregivers completed: a psychiatric interview to determine diagnosis of PTSD, anxiety and depressive disorders; the Asthma Illness Representation Scale (AIRS) to assess beliefs about their children's asthma; and the childhood asthma control test (C-ACT). RESULTS: One in five caregivers had PTSD, and these caregivers had lower total AIRS scores, lower scores on the AIRS Emotional Aspects of Medication Use subscale, and the AIRS Nature of Symptoms subscale, indicating illness beliefs less aligned with the professional model. Caregivers with PTSD were more likely to perceive asthma as an acute, difficult to control illness and focused on the emotional aspects of medication use. There was no relationship between PTSD in caregivers and self-report of their children's asthma control, but children with poorly controlled asthma had caregivers with lower total AIRS scores. CONCLUSION: Caregivers' traumatic experiences impact their beliefs about their children's asthma. Future interventions targeting these beliefs could improve the manner in which they understand and treat their children's asthma.