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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.

OBJECTIVES Care for children with severe neurologic impairment (SNI) often involves complex medical decision-making where therapeutic alliance between clinicians and families is essential. Yet, existing data suggest that communication and alliance are often lacking. This study aimed to examine aspects important to developing therapeutic alliance between clinicians and parents of children with SNI. METHODS A purposive sample of expert clinicians and parents of children with SNI completed brief demographic surveys and 1:1 semistructured interviews between July 2019 and August 2020 at a single tertiary pediatric academic center. Interviews focused on the inpatient experience and transcriptions underwent thematic analysis by a study team of qualitative researchers with expertise in palliative care and communication science. RESULTS Twenty-five parents and 25 clinicians participated (total n = 50). Many parents were mothers (n = 17, 68%) of school-aged children with congenital/chromosomal conditions (n = 15, 65%). Clinicians represented 8 professions and 15 specialties. Responses from participants suggested 3 major themes that build and sustain therapeutic alliance including: (1) foundational factors that must exist to establish rapport; (2) structural factors that provide awareness of the parent/child experience; and (3) weathering factors that comprise the protection, security, and additional support during hard or uncertain times. Participants also shared concrete actions that promote these factors in clinical practice. CONCLUSION Therapeutic alliance between clinicians and parents of children with SNI consists of at least 3 factors that support communication and medical decision-making. These factors are facilitated by concrete actions and practices, which enhance communication about the care for children with SNI.

CONTEXT: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care. OBJECTIVE: This study describes the experiences of parents of children with SNI during decision-making. METHODS: Eligible participants were parents facing a decision for a child with SNI admitted to acute or intensive care units at a single tertiary pediatric center. Parents completed 1:1 semi-structured interviews and brief surveys between August 2019-February 2020. Demographic information was extracted from the child’s electronic health record. A team of palliative and complex care researchers with expertise in qualitative methods used thematic content analysis to formulate results. RESULTS: 25 parents participated. The majority had children with congenital/chromosomal SNI conditions (n=13, 65%), >5 subspecialists (n=14, 61%), and chronic technology assistance (n=25, 100%). 68% (n=17) were mothers and 100% identified as being their child’s primary decision-maker. Responses from parents included 3 major themes: 1) our roles and actions; 2) our stresses and challenges; and 3) our meaning and purpose. Responses highlighted the pervasiveness of parental decision-making efforts and parents’ advocacy and vigilance regarding their child’s needs. Despite this, parents often felt unheard and undervalued in the hospital. CONCLUSIONS: During hospitalizations, when parents of children with SNI often face high-stakes medical decisions, interventions are needed to support parents and ensure they feel heard and valued as they navigate their child’s medical needs and system challenges. KEY MESSAGE: This qualitative study of parents of children with SNI facing decision-making in the hospital revealed not only the demands and stresses but also the meaning and purpose parents experience. As parents navigate their crucial roles, tools are needed to empower parents to be heard and to advocate for their child.

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.

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 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.

Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and potential solutions by underscoring the aspects of care that can be sustaining. Twenty-five clinicians participated including physicians (n = 8, 32%), social workers (n = 5, 20%), nurses/nurse practitioners (n = 5, 20%), case managers (n = 3, 12%), developmental therapists (n = 2, 8%), and other psychosocial clinicians (n = 2, 8%). Clinicians represented a variety of specialties including complex care/hospitalists (n = 10, 19%), palliative care (n = 7, 13%), and critical care (n = 6, 12%). Thematic content analysis revealed 3 major themes: (1) worries and challenges; (2) positive impact from being present; and (3) personal growth and meaning-making. Many clinicians described the ways listening, examining biases, learning about family perspectives, and normalizing the need for emotional processing helped them to understand their patients, families, and themselves more deeply.

Pediatric palliative care is interdisciplinary care that focuses on optimizing quality of life for children living with serious and life-threatening illnesses and their families. While concise on the surface, this definition is beset by a number of assumptions about how patients, families, clinicians, and ethicists define terms such as “quality of life,” “suffering,” or “comfort.” This chapter will not proclaim to provide answers for every ethically complex pediatric scenario, however, but will provide an overview of the unique challenges, frameworks, and opportunities to be found when exploring the ethics of decision-making in pediatric palliative care. This exploration is meant to help center and ground clinicians in what can be highly overwhelming situations so as to provide more optimal, compassionate, and intentional care.

Background: Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians...

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.

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.

Pediatric palliative care focuses on caring for children who are seriously ill and their families. These children are often attended to by many other providers who face various challenges as they support these families. Issues involving staff distress are common. Although involving pediatric palliative care teams is recommended, little has been discussed in the literature about the roles and deliberate strategies that pediatric palliative care providers deploy when supporting staff.This case description focuses on staff distress experienced by pediatric providers and aims to make specific recommendations regarding the ways in which pediatric palliative care teams can be helpful in supporting the needs of providers in these challenging care situations.Study and analysis of four pediatric palliative care cases from multidisciplinary perspectives.In challenging pediatric patient care situations, pediatric palliative care teams may be utilized to support providers when they experience staff distress. Techniques also used with patients, such as active listening and nonjudgmental validation, can be useful. Respecting each person's opinion, establishing goals of care and fostering open communication about the complexities of each child's case can be helpful to prevent burnout and job loss. By promoting understanding and open communication, providers can feel supported in caring for children with serious illnesses and their families.

Background: While rare, the neonatal presentation of osteogenesis imperfecta presents multiple challenges for providers. Infants with severe forms of OI may not receive early and appropriate management as results of definitive testing can take many weeks or even months. This presentation will review key concerns and interventions that can promote the best possible outcomes for babies and their families. Case Description: At 24 weeks gestation, B.R. had been diagnosed with “skeletal …