After years of the palliative care community calling for more open access to hospice services, pediatric patients are now eligible to receive simultaneous hospice services and disease-directed therapy. We report on five types of challenges that our team has experienced when implementing concurrent care, illustrated through case studies of three medically complex pediatric patients.

Context. Children with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. Objectives. To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. Methods. Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. Results. Forty-seven parents participated. Overall, highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. Lowest-rated domains included Spiritual and religious aspects of care and Cultural aspects of care. In exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children (P ¼ 0.02). Furthermore, bereaved parents rated the Caregiver support at the end of life domain significantly higher than parents who were currently caring for their child (P ¼ 0.04). No other significant differences in domain ratings were observed. Conclusion. Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts. J Pain Symptom Manage 2020;-:-e- .

Background Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. Methods We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). Results Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include “The care team treats my child’s physical symptoms so that my child has as good a quality of life as possible”, “I have regular access to on-call services from our care team”, and “The nurses have the knowledge, skills, and experience to support my child’s palliative or hospice care at home.” Conclusions The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams.

Providing this type of care throughout the illness process, from the time of diagnosis until the time of death, can be simultaneously challenging, physically and emotionally draining, enriching, and meaningful. This chapter provides an overview of pediatric hospice and palliative care and the special considerations necessary for nurses who may be called on to provide this unique type of care to children and their families.

Care for U.S. children living with serious illness and their families at home is a complex and patchwork system. Improving home-based care for children and families requires a comprehensive, multilevel approach that accounts for and examines relationships across home environments, communities, and social contexts in which children and families live and receive care. We propose a multilevel conceptual framework, guided by Bronfenbrenner’s ecological model, that conceptualizes the complex system of home-based care into five levels. Levels 1 and 2 contain patient and family characteristics. Level 3 contains factors that influence family health, well-being, and experience with care in the home. Level 4 includes the community, including community groups, schools, and providers. Level 5 includes the broader regional system of care that impacts the care of children and families across communities. Finally, care coordination and care disparities transcend levels, impacting care at each level. A multilevel ecological framework of home-based care for children with serious illness and families can be used in future multilevel research to describe and test hypotheses about aspects of this system of care, as well as to inform interventions across levels to improve patient and family outcomes.

This chapter provides an overview of pediatric palliative care, which is a family-centered approach to multifaceted care that focuses on a child’s and family’s well-being along a physical, psychological, emotional, spiritual, and social continuum. Pediatric hospice is a necessary and unique part of comprehensive pediatric palliative care as it can be provided simultaneously with curative treatment through the provision of concurrent care. Pediatric palliative care is best delivered by an interdisciplinary team of healthcare professionals working together to effectively communicate with families, provide excellent pain and symptom management, and support children and families in making decisions that are best for them. The goal of pediatric palliative care is to relieve suffering and improve quality of life for everyone affected by the illness of the child, including siblings, parents, grandparents, other relatives, teachers, school friends, faith community, and neighbors, as well as the healthcare professionals involved in their care. Nurses who care for dying children and their families have a unique and essential role, and they need significant personal and professional support and opportunities for ongoing education, as well as for self-care and reflection. Pediatric hospice and palliative care is a rapidly developing field with many opportunities for growth and expansion.

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