The continuing evolution of a cancer prevention, screening, and survivorship ECHO: A second year of implementation.

INTRODUCTION: An estimated 39,010 Indiana residents were diagnosed with cancer in 2021. To address the cancer burden, Project ECHO (Extension Community Healthcare Outcomes) was launched in 2019 in Indiana to build specialty healthcare capacity among non-specialists. Due to positive outcomes from the pilot year, the Cancer Prevention, Screening, and Survivorship ECHO was implemented for a second year. The purpose of this study was to measure the participation and regional impact of this ECHO. METHODS: ECHO sessions occurred twice monthly from October 2020 to October 2021. Changes were implemented in response to feedback from the pilot year, including making the curriculum more practical for learners and adding accreditation opportunities. Participant information and feedback was extracted from electronic surveys for review. RESULTS: There were 24 ECHO sessions with 213 unique participants, increased from 140 unique participants in the pilot year. An average of 23.5 individuals attended each session, increased from 15.5 individuals per session. Enrolled participants served in a diverse set of roles and represented 247 zip codes, 30 Indiana counties, and 32 states across the United States, each of which increased from the pilot year. DISCUSSION: In this second year, this ECHO expanded to reach more participants with increased attendance and a more diverse distribution of roles within healthcare, which may be attributed to feedback-driven curriculum design. Cancer care is multi-disciplinary, with health educators, nurses, and administrators, each acting within the cancer care continuum. As a result, this ECHO has been adapted to serve an increasingly broad distribution of professionals. CONCLUSION: The second year of the Cancer Prevention, Screening, and Survivorship ECHO displayed increased overall enrollment and participation, greater diversity among participant roles, and a wider reach across Indiana and the United States.

Building Cancer Control Capacity in Health Professionals Through Telementoring: A Survey Study of a Cancer Prevention and Survivorship Care ECHO Program.

Project Extension for Community Healthcare Outcomes (Project ECHO©) was developed to democratize knowledge among health professionals in underserved communities. Evidence supporting the use of this model for cancer control is limited. Using surveys adapted from Moore's evaluation framework, we evaluated the training outcomes of an ECHO program on cancer prevention and survivorship care. The study provides preliminary evidence that the ECHO model is a feasible way to build cancer control capacity among the healthcare workforce.

An evaluation of an Extension for Community Healthcare Outcomes (ECHO) intervention in cancer prevention and survivorship care.

To improve cancer care in Indiana, a telementoring program using the Extension for Community Healthcare Outcomes (ECHO) model was introduced in September 2019 to promote best-practice cancer prevention, screening, and survivorship care by primary care providers (PCPs). The aim of this study was to evaluate the program's educational outcomes in its pilot year, using Moore's Evaluation Framework for Continuing Medical Education and focusing on the program's impact on participants' knowledge, confidence, and professional practice. We collected data in 22 semi-structured interviews (13 PCPs and 9 non-PCPs) and 30 anonymous one-time surveys (14 PCPs and 16 non-PCPs) from the program participants (hub and spoke site members), as well as from members of the target audience who did not participate. In the first year, average attendance at each session was 2.5 PCPs and 12 non-PCP professionals. In spite of a relatively low PCP participation, the program received very positive satisfaction scores, and participants reported improvements in knowledge, confidence, and practice. Both program participants and target audience respondents particularly valued three features of the program: its conversational format, the real-life experiences gained, and the support received from a professional interdisciplinary community. PCPs reported preferring case discussions over didactics. Our results suggest that the Cancer ECHO program has benefits over other PCP-targetted cancer control interventions and could be an effective educational means of improving cancer control capacity among PCPs and others. Further study is warranted to explain the discrepancies among study participants' perceptions of the program's strengths and the relatively low PCP participation before undertaking a full-scale effectiveness study.

Defining Core Competencies and a Call to Action: Dissecting and Embracing the Crucial and Multifaceted Social Work Role in Pediatric Palliative Care.

While social workers are a well-established, part of the pediatric palliative care team, this manuscript presents the first published definition of the core competencies of a pediatric palliative care social worker. National experts in the field, guided by the pediatric special interest group of the Social Work Hospice and Palliative Network (SWHPN), worked together to articulate, and define core competencies. As the field of pediatric palliative care (PPC) continues to grow and develop, these competencies will help to better delineate the specific skill base of social workers in PPC. Such competencies may also create clearer role definition for emerging PPC social workers, guide training, clinical supervision, and mentorship in the field. They can also support improved interdisciplinary practice by assisting interprofessional colleagues in understanding and articulating the critical role of social workers as part of the PPC team. Additionally, such competencies may contribute to the growing development of role descriptions necessary for the hiring of social workers onto growing PPC teams, while also providing a framework for the creation and support of curricula centered on the subspeciality education and training of the next generation of PPC social workers.

Enhancing cancer prevention and survivorship care with a videoconferencing model for continuing education: a mixed-methods study to identify barriers and incentives to participation.

OBJECTIVE: To enhance cancer prevention and survivorship care by local health care providers, a school of public health introduced an innovative telelearning continuing education program using the Extension for Community Healthcare Outcomes (ECHO) model. In ECHO's hub and spoke structure, synchronous videoconferencing connects frontline health professionals at various locations ("spokes") with experts at the facilitation center ("hub"). Sessions include experts' didactic presentations and case discussions led by spoke site participants. The objective of this study was to gain a better understanding of the reasons individuals choose or decline to participate in the Cancer ECHO program and to identify incentives and barriers to doing so. MATERIALS AND METHODS: Study participants were recruited from the hub team, spoke site participants, and providers who attended another ECHO program but not this one. Participants chose to take a survey or be interviewed. The Consolidated Framework for Implementation Research guided qualitative data coding and analysis. RESULTS: We conducted 22 semistructured interviews and collected 30 surveys. Incentives identified included the program's high-quality design, supportive learning climate, and access to information. Barriers included a lack of external incentives to participate and limited time available. Participants wanted more adaptability in program timing to fit providers' busy schedules. CONCLUSION: Although the merits of the Cancer ECHO program were widely acknowledged, adaptations to facilitate participation and emphasize the program's benefits may help overcome barriers to attending. As the number of telelearning programs grows, the results of this study point to ways to expand participation and spread health benefits more widely.

Parental Decision-Making for Children With Medical Complexity: An Integrated Literature Review.

CONTEXT: Children with medical complexity (CMC) have multiple significant chronic health conditions that result in functional limitations and high health care utilization. The population of CMC is increasing and parent decision-making for this population is nuanced. OBJECTIVES: To review the literature specifically related to the parent experience of medical decision-making for CMC from the parent perspective. METHODS: A comprehensive, systematic approach was undertaken with the goal of identifying emergent themes in the existing literature as well as implications for clinical practice and future research. PubMed and PsycInfo databases were searched for English-language articles published between 1995-2020 that focused on parent experiences/perspectives using the search terms: children with medical complexity, children with serious illness, parent decision-making, parent experience, goals of care, parental priorities, advance care planning, and shared decision-making. RESULTS: The search yielded 300 unique manuscripts; including 32 empirical articles incorporated in this review. The synthesized findings were broken down into three main sections: 1. types of decisions that parents of CMC face, 2. key factors that influence parental decision-making for CMC, and 3. reasons that the decision-making process for parents of CMC is unique. The findings suggest that parents should be considered experts in their child's care and should be incorporated in shared decision-making in a culturally appropriate manner. CMC should have their personhood valued and providers require specialized training in communication. CONCLUSIONS: Parents of CMC have unique needs in their decision-making process and benefit from shared decision-making, continuity of care, collaborative communication and tailored, individualized care.

Cancer prevention, screening, and survivorship ECHO: A pilot experience with an educational telehealth program.

INTRODUCTION: The American Cancer Society, Inc. (ACS) estimates that 37,940 Indiana residents were diagnosed with cancer in 2020, which remains the leading cause of death in the state. Across the cancer continuum, national goals have been established targeting recommended benchmarks for states in prevention, screening, treatment, and survivorship. Indiana consistently falls below most goals for each of these targeted categories. METHODS: To address these disparities, we implemented Project ECHO (Extension for Community Healthcare Outcomes) as a virtual telehealth educational platform targeted at local healthcare providers. ECHO programs utilize a novel tele-mentoring approach to the education of clinicians in a hub/spoke design. Sessions occurred twice monthly from September 2019 to September 2020 and consisted of a traditional didactic lecture and a case-based discussion led by participating providers. RESULTS: During the pilot year there were a total of 22 ECHO sessions with 140 different participants. On average, 15.5 spokes attended each session with increasing participation at the end of the year. Post-session surveys suggested generally favorable perception with 72% of respondents finding the quality "excellent." DISCUSSION: Given the increasing rate of recurrent participation toward the end of the pilot year in conjunction with the favorable survey responses following each session, it was felt that the program was overall successful and warranted continued implementation. CONCLUSION: The Project ECHO platform is a validated telehealth education platform that has the potential to impact cancer care at multiple points along the cancer continuum at the regional level.

The Long Shadow: Collateral Impact and Finding Resilience Amidst a Global Pandemic Pediatric Palliative Care Social Work During COVID-19.

This manuscript illuminates the nuanced ways in which the COVID-19 pandemic has impacted the pediatric palliative care social work role and clinical care in caring for children with life-limiting illnesses and their families throughout the country. The authors discuss memorable moments, logistical impacts, telehealth usage, decision-making experiences, end of life care, bereavement practices, specialized interventions, and self-care. The paper concludes with lessons learned and practical recommendations for the future.

Neonatal palliative care: perception differences between providers.

OBJECTIVE: The purpose of this study was to describe differences and identify education gaps in the perception of palliative care (PC) between neonatal care providers in a Level IV Neonatal intensive care unit. STUDY DESIGN: This is a descriptive survey mixed methods study. Email surveys were sent to social workers, pharmacists, dieticians, nurses, respiratory therapists, fellows and faculty in November of 2018. Total number of respondents was 181 with a response rate of 56%. RESULTS: Statistically significant differences between faculty and non-faculty were found in regards to benefits of early PC consults, need for automatic consults for certain diagnosis and the frequency of PC consults. CONCLUSION: The perception of PC differs greatly between faculty and non-faculty. Educational initiatives surrounding PC and communication along with instituting automatic consults for certain diagnosis could help bridge this difference in perception and educational gap.

Creating a Seat at the Table: How Family Meetings Elucidate the Palliative Care Social Work Role.

Background: Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams. Objective: This case discussion focuses on the care of patients and families surrounding family meetings to highlight the crucial role of the PCSW in (1) preparing the family; (2) participating in the provider meeting; (3) participating in the family meeting; and (4) following up after the meeting. The aim is to illuminate how the PCSWs can demonstrate their unique and essential skill set to medical teams and as a means of furthering the work of psychosocial clinicians throughout medical systems. Conclusion: As the medical model continues to shift toward family-centered care, it is crucial for medical teams to optimize their partnership with patients and families. PCSWs can offer a trauma-informed biopsychosocial-spiritual lens that is instructed by continuity of care and exemplary clinical and rapport-building skills. PCSWs can play a critical role in optimizing communication, support, collaboration, and family-centered whole-person care.

Bibliotherapy and Bereavement: Harnessing the Power of Reading to Enhance Family Coping in Pediatric Palliative Care.

Bibliotherapy is a therapeutic intervention that could potentially be utilized by pediatric palliative care social workers to aid in providing individualized support and adaptive coping techniques through end-of-life and bereavement. Multiple modalities of implementing bibliotherapy are considered, including applications in individual and group counseling. An institutionally supported bibliotherapy program that aims to provide therapeutic and recreational texts for patients, families and clinicians is described. Suggested guidelines and book titles for use in practice with bereaved siblings and families are provided alongside targeted description for use in clinical practice.

Pediatric Resident Perception and Participation in End-of-Life Care.

BACKGROUND: Despite advances in medical care, pediatric deaths are still an unfortunate reality. Most of these deaths occur within a hospital setting. End-of-life care is an important part of medical care for children with serious illnesses. Despite the importance, pediatric providers report a lack of comfort surrounding end-of-life care. OBJECTIVE: To assess categorical pediatric residents' perceptions and participation in providing end-of-life care to dying children and their families. STUDY DESIGN: This is a survey-based, descriptive, mixed-methods study. Survey was sent to categorical pediatric residents at Indiana University School of Medicine in June 2018 to obtain both quantitative and qualitative information on resident perception and participation in end-of-life care. Surveys were sent to 100 residents with a response rate of 68%. SETTING/PARTICIPANTS: Pediatric residents at Indiana University School of Medicine. RESULTS: The comfort and participation in end-of-life care are limited in all levels of pediatric training. Residents do not feel comfortable with 19 of 22 questions related to end-of-life care. Only 32% of residents felt their education prepared them to participate in end-of-life care. Almost one-fifth (19.5%) of residents report participating in zero aspect of end-of-life care. Themes discussed by residents include education, experience, communication, social norms, emotions, self-care, comfort, and family. CONCLUSION: More formalized education and training is needed to increase resident comfort with and participation in end-of-life care. Such future interventions should focus on communication surrounding difficult conversations and providing guidance for families.

Bereavement After a Child's Death.

The death of a child is a heart-wrenching experience that can have a significant impact on parents, siblings, and families while also often having ripple effects throughout the child's community. Pediatric loss has an impact on family structure and dynamics, individual identity formation, and conceptualization as well as professional practice. This article explores bereavement after a child's death through the lens of the family, the parent, the sibling, the forgotten grievers, and the provider.