Pediatric hospice

The pediatric palliative care (PC) is the physical, mental and spiritual care of children as well as support of their family members. The purpose of the study - to investigate satisfaction of parents of children with severe refractory diseases with availability and quality of PC in the Moscow region. The prospective cohort study was carried out using sociological survey in 2020-2021 on the basis of the "Moscow Oblast Hospice (for children)". The survey involved 300 people (63.7% of total number of patients)...

OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate...

OBJECTIVE: To assess the risks, benefits and resource implications of using home-blended food in children with gastrostomy tubes compared with currently recommended formula feeds. DESIGN: This is a cohort study. Data were collected at months 0, 12 and 18 from parents and clinicians using standardised measures. SETTING: 32 sites across England: 28 National Health Service trusts and 4 children's hospices. PATIENTS: Children aged 6 months-18 years who were gastrostomy fed...

CONTEXT: Pediatric palliative care (PPC) improves end-of-life (EOL) outcomes for children with cancer. Though PPC visits are the 'intervention' in studies focused on EOL care, the content of PPC visits within pediatric oncology is poorly understood. OBJECTIVES: This study aimed to understand the scope of PPC practice during visits for children with cancer and their families. METHODS: This was a retrospective cohort study of patients 0-27 years with cancer seen in PPC clinic within an academic pediatric oncology center between 2017 and 2022...

BACKGROUND AND AIM: Pediatric Intensive Care Units (PICUs) are clinical settings where patient loss is frequently experienced. A sense of professional grief and posttraumatic growth in nurses who have experienced patient loss has a significant impact on psychological and physical health, work satisfaction, turnover rates, as well as on personal and professional relations, and employee loyalty. The aim of this study was to investigate grief and posttraumatic growth in PICU nurses and to examine related factors...

Manjusha NairHospice care plays a vital role in providing compassionate and holistic support to terminally ill patients and their families. While hospice care has gained recognition and acceptance globally, its implementation and understanding in the context of pediatric patients in India remain limited. This article aims to explore the pediatrician's perspective on hospice care in India, highlighting the challenges and opportunities for enhancing end-of-life care for children. By understanding the unique needs of pediatric patients and their families, healthcare professionals can contribute to the development and improvement in hospice care services across the country...

BACKGROUND: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life. METHODS: A scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0-19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death)...

BACKGROUND: Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are still few structured approaches of SDM in PPC. We aimed to build a model of SDM in PPC that achieves better care and outcomes for children and their family members. METHODS: This study is a descriptive phenomenology study...

Whether death occurs in the context of a chronic illness or as the sudden loss of a previously healthy infant, child, or adolescent, the death of a child is a highly stressful and traumatic event. Psychosocial support for families after the death of a child embodies core medical values of professional fidelity, compassion, respect for human dignity, and promotion of the best interests of a grieving family. The pediatrician has an important role in supporting the family unit after the death of a child through a family-centered, culturally humble, trauma-informed approach...

End-of-life (EOL) care in pediatrics is a unique subspecialty lacking adequate provider education and training. Patient and family outcomes may improve when clinicians are provided with training in this care. Recognizing the need for this specialized education, a small group of bereavement coordinators created an institution-wide pediatric EOL summit at a large urban pediatric teaching hospital. One hundred forty-five clinicians from 14 diverse disciplines attended the first annual pediatric EOL summit. A survey was sent to the participants for feedback...

Pediatric palliative care was introduced in South Korea in 2018, with an increased need for care of children with life-limiting conditions, such as leukemia. However, the perspective of parents, who are the primary caregivers, regarding pediatric palliative care has not been explored. This study aimed to describe the pediatric palliative care-related experiences of parents who had lost a child to leukemia to better understand their needs and care outcomes. Ten mothers of children who received pediatric palliative care were recruited...

BACKGROUND: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. METHODS: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada...

No abstract text is available yet for this article.

PURPOSE: The nature of interactions between surgical and pediatric palliative care (PPC) teams caring for seriously ill children is unknown. This study compares pediatric surgeons' and PPC physicians' perspectives and practices regarding PPC in surgical patients. METHODS: A survey was administered to members of the American Pediatric Surgical Association and Pediatric Interest Group of the American Academy of Hospice and Palliative Medicine. RESULTS: One hundred twenty-four pediatric surgeons (31% female, 17...

Objective: We implemented and studied a novel curriculum that combined role play, didactic education, and the use of a procedure card for asynchronous learning to improve second-year pediatric residents' skills in delivering serious news. Design: Phase 1 established baseline performance with a self-efficacy survey and observed simulation delivering serious news. Phase 2 included directed education of participants with a validated communication skills training framework. During Phase 3, participants were instructed to review the communication procedure card as a just-in-time reference prior to delivering serious news to patients and their families over 6 months...

Virtual reality (VR) is an emerging technology that can provide a nonpharmacological approach to symptom management for those with serious illnesses. The VR platform offers a unique perspective to connect patients with places and experiences they might otherwise miss. This rapid review aims to present the current literature on the uses and benefits of VR for palliative care and hospice patients. Through a systematic process, we identified 14 articles published between 2018 and 2023 that used VR as an interventional strategy for symptom management...

BACKGROUND: Effective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Several barriers among patients, families and treating specialists have been identified in the context of initializing pediatric palliative care. The aim of the study was to assess the experience with initial pediatric palliative care consultations from perspectives of family caregivers and treating physicians with a special focus on two innovative approaches: attendance of the treating specialist and the opportunity for parents to give feedback on the written report from the consultation...

BACKGROUND: Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC)...

BACKGROUND: One of the most important and ethically challenging decisions made for children with life-limiting conditions is withholding/withdrawing life-sustaining treatments (LST). As important (co-)decision-makers in this process, physicians are expected to have deeply and broadly developed views. However, their attitudes and experiences in this area remain difficult to understand because of the diversity of the studies. Hence, the aim of this paper is to describe physicians' attitudes and experiences about withholding/withdrawing LST in pediatrics and to identify the influencing factors...

In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices in California that provided care to children from 2018 to 2021. Using public data from the California Home Health Agencies and Hospice Annual Utilization Report, we conducted a longitudinal, retrospective descriptive study to examine the effects of hospice characteristics on adult hospices which provide care to children...