Development of Objectives to Inform a National Standardized Primary Palliative Care Curriculum for Health Professions Students.

Despite recent educational advances, the need for a national standardized primary palliative care curriculum for health professions students remains evident. An interprofessional leadership team developed a set of core learning objectives built on previously published competencies. A survey was then sent to palliative care experts for feedback and consensus.

The Impact of Caring for Children With Severe Neurological Impairment on Clinicians.

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%).

A Qualitative Study of Clinicians and Parents of Children with Severe Neurological Impairment on Tools to Support Family-Centered Care.

Children with severe neurological impairment (SNI) have complex conditions and require family-centered care, yet, this is challenging in the hospital. To describe themes related to building parent-clinician rapport and to examine ways to promote family-centered care for children with SNI. secondary analysis of data from a qualitative cross-sectional 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.

Forming Clinician-Parent Therapeutic Alliance for Children With Severe Neurologic Impairment.

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.

From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically.

Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's unique needs and abilities which hinders their care. This study aimed to understand the challenges and suggested approaches parents identified to seeing their child holistically.

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.

Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children With Severe Neurological Impairment During Decision-Making.

Context: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology and/or surgery, goals of care and/or advance care planning, or transitions of care.

Objectives: This study describes the experiences of parents of children with SNI during decision-making.

The Long Shadow: Collateral Impact and Finding Resilience Amidst a Global Pandemic .

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.

Stopping, starting, and sustaining HIV antiretroviral therapy: a mixed-methods exploration among African American/Black and Latino long-term survivors of HIV in an urban context.

Background: Although periods of HIV antiretroviral therapy (ART) discontinuation have deleterious health effects, ART is not always sustained. Yet, little is known about factors that contribute to such ART non-persistence among long-term HIV survivors. The present study applied a convergent parallel mixed-methods design to explore the phenomena of stopping/starting and sustaining ART, focusing on low-socioeconomic status African American or Black and Latino persons living with HIV (PLWH) who face the greatest challenges.

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

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. 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.

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.

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.

Identifying the Deliberate Prevention and Intervention Strategies of Pediatric Palliative Care Teams Supporting Providers during Times of Staff Distress.

Background: 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.