Publications & Posters

Summary:

During hospitalization in the pediatric intensive care unit (PICU), approximately 25-60% of parents experience clinical levels of distress (i.e., traumatic stress, anxiety, and depressed mood), which likely impacts their decision-making, ability to care for their child, and puts them at risk for long-term psychological sequelae (e.g., posttraumatic stress disorder). Despite this, PICU providers rarely refer parents to formal psychological services, and parents report that their emotional needs are not well addressed by hospital staff. Therefore, the present study aimed to evaluate how fellows identify and respond to parent distress in the PICU. 

All fellows felt that it is important and at least partially the medical team’s responsibility to manage parent distress in the PICU. They identified parent medical understanding and child medical factors as risk factors. Being present, explaining medical information, and utilizing external resources were important strategies for responding to distress. Most were very interested in receiving training to better support parents. Educational interventions targeting these areas should be developed and tested to overcome barriers of provider time, resource availability, and language. 

 https://pediatrics.aappublications.org/content/147/3_MeetingAbstract/523 

Summary: 

Changes due to COVID-19 may increase already elevated risk of distress for PICU families and providers. This qualitative study aimed to assess pediatric critical care providers’ perspectives on the impact of COVID-19 on the experiences of patients and families in the PICU, and on their own personal and professional lives.  

Regarding impact on families, providers observed heightened anxiety due to fear of contracting COVID-19 and a corresponding fear of the hospital. Many described hospital precautions as stressful. Cohorting COVID-19 patients created stress via location changes, fear of the “COVID-19 floor,” and restricted movement of families. 

Regarding impact on providers, many feared contracting COVID-19 and exposing others. They adapted to work environment changes such as working from home, constant procedural changes, and reduced collegial interactions. COVID-19 also affected patient care (e.g., harder to establish rapport, fewer interactions).

Results elucidate the perceived impacts of COVID-19 and associated hospital precautions on the lives of PICU providers, patients, and families. Providers, patients, and families likely require additional psychosocial support during the pandemic. When possible, policies regarding disease management should maximize safety while minimizing additional stress. Further research is needed to explore patient and family perspectives regarding the impact of COVID-19 and its continued impact over time. 

Summary:  

Effective communication between families and pediatric providers is essential for mitigating family stress and improving quality of care. Families with Limited English proficiency (LEP) must contend with the added stress of language barriers, which could impact medication adherence, patient outcomes, and quality of care.

This study aimed to describe interpreters' communication of patient and family distress to pediatric providers.

Interpreters noted that body language and vocalizations, in addition to cultural

nuances based on intersecting identities were indicators of patient and family distress. Psychologists may help improve interactions via training providers and interpreters to work

together effectively, acting as liaison, supporting coping, and ensuring effective information transfer. Future studies should evaluate providers’ understanding of cultural nuances in distress expression.

Summary:  

Introduction: Palliative care (PC) aims to enhance quality-of-life and manage symptoms among patients with life-limiting or chronic conditions. Pediatric PC is underused and may be explained by inaccurate or lack of PC knowledge. We examined PC awareness, knowledge, and beliefs among caregivers of children.

Methods: Data source was the 2018 cross-sectional Health Information National Trends Survey. Respondents (N=105) were caregivers of a child with a medical, behavioral, disability, or other condition (Mage=44.01, SD=10.44 years; 79% female; 56% White, 19% Black, 14% Hispanic). Caregivers indicated PC awareness (i.e., “I know a little bit about PC,” “I know what PC is and could explain it,” and “I’ve never heard of it”). Caregivers then reported knowledge of the goals (4 items; accurate/inaccurate) and beliefs (5 items; positive/negative) about PC.

Results: Nearly 62% of caregivers were unaware of PC (19% knew a little; 15% could explain). A majority of those who were aware (n=40) had accurate knowledge about the goals of PC (93% help friends/family cope with illness; 95% pain/symptom management; 92% offer social-emotional support). Sixty-two percent of caregivers agreed that a goal of PC was to extend life, indicating inaccurate knowledge. Twenty-five percent of caregivers inaccurately agreed that PC and hospice were the same (55% disagreed; 20% did not know). Over three-quarters (77%) of caregivers accurately disagreed with needing to stop treatment to accept PC (5% agreed; 18% did not know). Some caregivers believed PC meant giving up (10%) and associated it with death (33%). Eighty-five percent of caregivers believed it was a doctor’s obligation to inform all patients with cancer about the option of PC.

Conclusions: There is a need to improve general awareness about PC. Early introduction and communication about PC following serious diagnoses may help caregivers make informed decisions and subsequently improve knowledge and correct negative beliefs surrounding PC.

Summary: 

315 community-dwelling young adults completed an online survey, which included both multiple-choice and open-response questions, regarding their knowledge, experience, and perceptions of palliative care. Fewer than one in five young adults had heard of palliative care and 9% reported that they knew a patient who had received it. Some had learned about it through work, personal relationships, and school. When asked to describe who receives palliative care, young adults frequently mentioned illness, dying, and symptom management/quality of life.

Summary: 

The objective is to describe the challenges faced by and opportunities for better supporting PICU parents using reports from a participant observer.  

This sub-analysis of a study at two academic PICUs assesses the impact of a navigator-based parent support intervention (PICU Supports), in which a trained navigator met with parents and providers to assess and address communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered family meetings; and completed a post-PICU discharge parent check-in. Every  7 days and at  PICU discharge, navigators  described  1) the family’s "biggest challenges,”

 2)  communication challenges,  and 3)  ways the healthcare team could better support the family.  

Supporting PICU parents must address physical, emotional and financial challenges.  Navigators suggested improvements related to communication, listening, and offering needed resources. Interventions targeting the challenges identified here may mitigate stress and improve parent mental and physical health outcomes.   

Summary:

Primary caregivers of children with medical complexity (CMC) experience high distress, but less is known about how they cope with their daily and long term stressors. To address this gap, the study team, which consisted of graduate students, medical providers, psychologists, and research staff, in consultation with family representatives, conducted and qualitatively coded hourlong interview transcripts with twenty parents of CMC who were served by a Complex Care Program. Parents described primarily using emotion-focused and meaning making strategies. While further research is needed to explore coping in more representative samples, psychologists may have a unique role in identifying and bolstering the many existing strengths of families who care for CMC.

Summary: 

Parents of children hospitalized in the PICU often experience significant distress. Assessing parents’ real-time experiences during hospitalization may help to detect, prevent, and address distress. 

 Most participants described that the system was convenient, no improvement is needed, and there were no barriers to completion.

Results suggest that this text-message based data collection tool was a feasible and acceptable way to assess parent experiences in the PICU. Text interface likely provides a non-intrusive way to assess parent experiences by allowing them to complete surveys privately and at their own convenience.

Summary: 

Parents are sensitive to the language used to introduce palliative services, perhaps more so than the label. Using “palliative care” and not associating services with hospice demonstrated the most positive emotional reactions.​ It may be more appropriate to assess parents’ understandings about palliative care, rather than assuming all families hold misconceptions​.

Summary: 

While hospitalization in the Pediatric Intensive Care Unit (PICU) is a stressful experience for children and families, the average length of stay (LOS) is 5 days with 50% discharged within two days, and the mortality rate is about 2%. Despite this relatively short stay and low prevalence of death, 25-60% of PICU parents experience clinical symptoms of traumatic stress, anxiety, and depression. Previous research suggests that subjective perceptions of medical events impact parental distress in the PICU. Therefore, pre-existing expectations about the PICU may impact emotional adjustment. The present study aimed to characterize community parents’ perceptions of the PICU to identify potential misconceptions. 

Results suggest that when considering a hypothetical PICU admission, community parents over-estimate LOS and likelihood of death, regardless of previous PICU experience or medical field employment. Therefore, medical providers should provide education that corrects overly negative expectations at admission. Previous research suggests that higher levels of social support mitigate poor parental psychological outcomes, and the present study indicates that parents were frequently willing to provide emotional and practical support to a friend with a child in the PICU. Therefore, providers should encourage PICU parents to seek support from friends and family in managing stress related to their child’s well-being and in fulfilling practical needs external to hospitalization.  

Summary: 

This was a sub-analysis of a study at two academic PICUs assessing the impact of a navigator-based parent support intervention.  Navigators met with parents of PICU patients regularly during their stay and reported on the families' biggest challenges, communication challenges, and ways the healthcare team could improve their support of the family. Qualitative data were coded iteratively. Families' biggest challenges were struggles with home life, factors related to hospitalization, and diagnosis distress. Problematic communication was usually characterized by lack of information, poor communication quality, or team communication difficulties, and healthcare providers could enhance family support by improving medical communication and relationship with families. 

Summary:

OBJECTIVE: The novel coronavirus disease 2019 (COVID-19) pandemic has dramatically changed health care delivery and impacted health care providers. However, little is known about the impact of the pandemic in PICUs. In this qualitative study, we aimed to assess pediatric critical care providers’ perspectives on the impact of the COVID-19 pandemic on the experiences of patients and families in the PICU and on their personal and professional lives.

RESULTS: For both PICU providers and patients and families, participants described a negative overall impact of the pandemic, especially relating to increased stress and fear of contracting the disease. Disease precautions such as visitor restrictions and restricting movement were reported to be particularly stressful for families because they limited coping strategies (eg, in-person social support). Providers described changes to the work environment, patient care, and their personal lives.

CONCLUSIONS: Results elucidate the perceived impacts of COVID-19 and associated hospital precautions on the lives of PICU providers, patients, and families. Providers, patients, and families likely require additional psychosocial support during the pandemic. When possible, policies regarding disease management should maximize safety while minimizing additional stress. Further research is needed to explore patient and family perspectives regarding the impact of COVID-19 and to evaluate the continued impact of COVID-19 over time.

Summary: 

OBJECTIVE: Pediatric medical interpreters facilitate communication among patients, families, and clinicians across linguistic and cultural barriers in high acuity, distressing medical encounters. Few studies explore distress among trauma interpreters, and even less research exists on distress and supports for coping among pediatric medical interpreters. Further research is important given the likely risk of secondary traumatic stress and burnout in this population, especially among interpreters working in high-acuity medical settings. This study explores distress among pediatric medical interpreters, available supports and resources for coping with distress, barriers to accessing support, and further resource needs. 

RESULTS: Interpreters described that encounter type, setting, presence of emotional content, interpreter role, feeling uncertain or unprepared, consecutive consults, and consults related to their own life contribute to distress. Resources used for coping with distress were organizational (e.g., training programs), interpersonal (e.g., manager support), and intrapersonal (e.g., focus on interpreting). Interpreters shared challenges to accessing supports (e.g., employment status, exclusion from medical team debriefings). Interpreters suggested resources such as support groups, team debriefs, and training to facilitate coping with distress.

CONCLUSIONS: Pediatric medical interpreters experience many diverse contributors to distress. Given their unique positions, interpreters are at an increased risk of negative psychological sequelae. Healthcare supervisors, clinicians, and institutions can promote interpreter coping and distress management by viewing interpreters as part of the medical team (e.g., including interpreters in team debriefings), providing coping trainings that are co-created with interpreters, and tailoring supports to interpreters’ specific position as language and culture brokers. As this study represented the experiences of Spanish-English interpreters from a single pediatric hospital, further research is warranted to understand more interpreters’ experience of distress and the supports and resources needed.

Summary:

OBJECTIVE: Limited English proficient or language-diverse patients and families in pediatric interpreted medical encounters (IME) are susceptible to health disparities and inequities in the US compared to English proficient patients and families in language-concordant medical encounters. Policies to improve access to language services intend to bridge this gap, yet evidence suggests that significant inequities still exist. This study explores perspectives of interpreters and pediatric critical care medical providers to better understand the complexities of IME in pediatric settings.

RESULTS: Factors were identified by both interpreters and medical providers that negatively affected communication, equity, and inclusion. These included systems-level factors (e.g., time constraints and language variety), interpersonal factors (e.g., difficulties with communication and mistrust),and intrapersonal factors (e.g., implicit biases and judgements). These results highlight multiple layers of potential inequities which adversely affect patients and families in pediatric IME.

CONCLUSIONS: One way to address language access inequities is simply getting interpreters in the room, yet this cannot address language access inequities in pediatric systems and among pediatric IME stakeholders. The authors argue that to disrupt discriminatory practices in IME, care team members should be trained to identify and acknowledge their own biases regarding language use and language access services. Increased allocation of resources to language access services on the systemic, interpersonal, and intrapersonal levels is imperative to improving language access equity.

Summary:

OBJECTIVE: Parents of children in the Pediatric Intensive Care Unit (PICU) experience substantial stress. A parent’s perception of their child’s illness severity, more than objective measures, predicts psychological outcomes. No tools exist to assess parents’ real-time experiences. The aim of this study is to assess the feasibility and acceptability of a text-based tool to measure parental experience. 

RESULTS: Of twenty enrolled participants, the first 5 were excluded due to technical issues. Of the 15 included, results demonstrated feasibility and acceptability. Most participants (86%) completed all surveys during the PICU stay and continued to complete surveys at a high rate: 79-94% 3 mo post-discharge. All participants agreed that the system was easy to use during and after PICU stay and were satisfied with the system at discharge, and 91% remained satisfied 3 mo post discharge. Subjectively, 76% reported the interface was comforting and 69% benefited from the system. From the interviews, participants lauded the system’s convenience and applicability of content, as well as the built-in reminders. Some proposed changes to improve the ergonomics. Many suggested this interface could help teams better support families. 

CONCLUSIONS: A text-based interface for measuring experience in the PICU is feasible and acceptable to parents. Further research can explore how this could identify parents most at risk of adverse psychological sequelae and lead to earlier supportive interventions. 

Summary:

OBJECTIVE: To map the range of multidisciplinary palliative care interventions that are available to adolescents and young adults (AYAs) with serious illness. 

RESULTS: Twenty-two articles describing nine specific AYA-focused, multidisciplinary palliative care interventions were included in this review. Interventions focused on supporting advance care planning, facilitating treatment decision making, managing pain, and promoting resilience, psychosocial well-being, and quality of life. Interventions were delivered face-to-face and via different eHealth platforms and were targeted to AYAs with cancer, HIV/AIDS, and cystic fibrosis in both inpatient and outpatient settings.

CONCLUSIONS: Few evidence-based multidisciplinary palliative care interventions have documented benefits for AYAs with serious illness. The limited work that has been done demonstrates that AYAs are open to engaging in palliative care interventions and suggests that individual members of the multidisciplinary team can implement these different interventions to support enhanced patient outcomes. 

SUMMARY: 

Parents of children in the pediatric intensive care unit (PICU) experience substantial stress; a parent's perception of their child's illness severity, more than objective measures, predicts psychological outcomes. No tools exist to assess parents' real-time experiences. This pilot study evaluated the feasibility and acceptability of a text-based tool to measure parental experience.

RESULTS: Of 20 enrolled participants, the first 5 were excluded due to technical issues. Of the 15 included, results demonstrated feasibility and acceptability. Most participants (86%) completed all surveys during the PICU stay and continued to complete surveys at a high rate: 79%-94% 3 months post-discharge. All participants agreed that the system was easy to use and were satisfied with the system at discharge, and 91% remained satisfied 3 months post-discharge. Additionally, 76% reported comfort, and 69% reported benefit. From the interviews, participants lauded the system's convenience and applicability of content. Some proposed changes to improve ergonomics. Many suggested this interface could help teams better support families.

CONCLUSIONS: A text-based interface for measuring experience in the PICU is feasible and acceptable to parents. Further research can explore how this could identify parents most at risk of adverse psychological sequelae and lead to earlier supportive interventions.

Summary:

This was a study of Complex Care family experiences related to the COVID-19 pandemic. We found that in general, the pandemic was extremely stressful for families and added to many of the challenges they already faced. The expansion of telehealth was an advantage of the pandemic because it allowed families to access care more conveniently. 

Summary:

This study explores pediatric medical interpreters’ perspectives on clinician communication practices in medical encounters characterized by distressing content and difficult discussions.