State of the Service: Pediatric Palliative and Hospice Community-Based Service Coverage in the United States.

Background: The pediatric literature describes reliance on community-based organizations for home-based palliative and hospice care for children. Objective: To quantify and describe the inclusion of children in services, staffing, and care scope offered by community-based hospice organizations in the United States. Design and Subjects: This study utilized an online survey distributed to organizational members of the National Hospice and Palliative Care Organization (NHPCO) in the United States. Results: A total of 481 hospice organizations from 50 states, Washington DC, and Puerto Rico responded. Twenty percent do not provide services for children. Nonmetro geographies are less likely to provide services for children. Pediatric services provided include home-based pediatric hospice (57%), home-based palliative care (31%), inpatient pediatric hospice (23%), and inpatient pediatric palliative care (14%). Hospice annual pediatric census is an average of 16.5 children, while palliative care annual census is an average of 36. Less than half (48%) of responding agencies have a team that is dedicated to only pediatric care. Medicaid and the Children's Health Insurance Program are the most common forms of reimbursement, with 13% depicting "no reimbursement" for provision of care for children and many relying on philanthropy coverage. Lack of trained personnel, discomfort, and competing priorities were depicted as the most common barriers. Conclusions: Children remain underrepresented in the extension of care offered through community-based hospice organizations in the United States particularly in nonmetro settings. Further research into strong training, staffing, and reimbursement models is warranted.

Challenges and Opportunities of Providing Pediatric Funeral Services: A National Survey of Funeral Professionals.

BACKGROUND: Funeral professionals offer a unique opportunity to support, educate, and advocate for grieving families after the death of a child. From the initial point of contact to the burial, funeral professionals shape the final moments and memories of a family and a community. And yet, little is known about the needs of funeral professionals to provide high quality services when a child dies. OBJECTIVES: To conduct a needs assessment among funeral professionals in conducting funeral services for children. METHODS: Active National Funeral Directors Association members were surveyed on their experience and needs in providing pediatric funeral services. The survey contained 41 questions about experience, skills, and knowledge in providing pediatric funerals. The survey included multiple choice, yes/no, and open-ended questions. Descriptive statistics were generated from the survey items and comments/open-ended questions were coded and assessed for themes. RESULTS: More than 200 responses were received. The respondents conducted 43 pediatric funeral services in a 5-year period (approx. 8 services/year). The top 5 self-identified training needs included grieving parents, grieving siblings, memorials, comforting the community, and outreach. Themes from the open-ended questions were (a) maintaining professionalism, (b) managing emotions and experiences, (c) assessing family dynamics, (d) managing professional skills, and (e) building collaborative networks. CONCLUSIONS: Specific training needs were identified that will inform the development of targeted training for funeral professionals to improve their skills and knowledge of pediatric funeral services.

Pediatric palliative and hospice care: Pennsylvania's model of collaboration.

In the state of Pennsylvania, a collaborative model has been developed for improving pediatric palliative care and end-of-life care services to children with life-limiting conditions and their families. The inspiration and efforts of several bereaved parents provided the initial impetus for this encouraging model. Pennsylvania's model involves cooperation and collaboration among several groups and initiatives across the state, as well as the integration of parent-professional collaboration at all levels and in each initiative. The collaborating groups include 1) a volunteer grassroots resource and education initiative, Helping Hands-Healing Hearts; 2) the Pittsburgh Pediatric Palliative Care Coalition, a coalition of concerned parents and experienced palliative and hospice care providers working together to improve service availability; and 3) the Pennsylvania Children's Hospice and Palliative Care Coalition, which developed as an outcome of a state-level Pennsylvania Pediatric Hospice Care Task Force, and which, among other activities, works with the Pennsylvania Department of Public Welfare and several Pennsylvania legislators on pertinent policy and legislative initiatives.