The Intervention Areas of the Psychologist in Pediatric Palliative Care: A Retrospective Analysis.

Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease's natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care (PPC) network deals with a large variety of issues. Little consideration has been given to the variety of intervention areas of psychology in PPC that concern the whole life span of the patient and family. The PPC network is composed by a multidisciplinary team of palliative care specialists that intervenes at home, in the hospital and in every place where the patient is living. The network coordinates different public health services to respond to clinical, psychosocial and spiritual needs. In these scenarios, the psychological need is not a single event but a moment inserted in the complexity of the child's needs. This retrospective monocentric project consists of an analysis of characteristics of psychological interventions in our PPC service. The time frame taken into consideration is 2019-2020, analyzing the clinical records of 186 patients of Pediatric Palliative Care and Pain Service of Veneto Region (Italy). The areas that emerged in the analysis show how the intervention of the psychologist in PPC does not concern only end-of-life, but a series of topics that are significant for the family to guarantee psycho-social wellbeing oriented toward the best quality of life. In conclusion, these different topics highlight the complexity of the child and family experience. This variety must be taken into consideration, the psychologist must increase holistic support with a dedicated skills curriculum.

International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS.

CONTEXT: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC. OBJECTIVES: An international group of experts in PPC has revised the standards in PPC through the GO-PPaCS project (Global Overview - PPC Standards). The goal was to update the PPC standards considering the specificity of different settings, resources, and emerging challenges. The present document is intended to reach all people directly or indirectly involved in PPC. METHODS: A literature review in MEDLINE was conducted to expand on the fundamental points and current standards on PPC and to cover an international setting. The literature search (updated on the 15th of April 2021) was carried out using different combinations of keywords and focusing on papers published in English over the past 5 years (2016-2020), but older articles were considered when relevant. The consensus on the fundamental points, standards of care and paper contents was reached by open discussion. RESULTS: Fundamental points were defined regarding the definition of PPC, eligibility criteria and the magnitude of the need for PPC, while standards were redefined for the following six areas: 1) clinical, developmental, psychological, social, ethical and spiritual needs; 2) end-of-life care; 3) care models and settings of care; 4) PPC in humanitarian emergencies; 5) care tools; and 6) education and training for healthcare providers. CONCLUSION: The present document, developed with the contribution of an international group of experts from different countries, experiences and models of care, provides fundamental points and standards for a wider implementation of PPC worldwide.

An estimation of the number of children requiring pediatric palliative care in Italy.

BACKGROUND: Pediatric palliative care (PPC) addresses the physical and psychological needs of children suffering from life-limiting diseases. To define prevention and educational plans and to properly allocate resources, a precise estimation of the PPC burden is required. OBJECTIVES: To estimate the current number of children requiring PPC in Italy, useful to assist policy-makers and healthcare bodies in the organization and allocation of PPC resources. METHODS: Literature data, The Global Atlas of Palliative Care at the End of Life and Italian national databases have been consulted. RESULTS: According to our estimation, at present, a total of 20,540-32,864 children in Italy require PPC (34-54 children/100,000 inhabitants) of whom 18 children/100,000 inhabitants require specialized PPC. CONCLUSIONS: The present work is a fundamental tool to be used by the institutions, the local networks of PPC and the health programmers when formulating organizational models and care plans consistent with the actual need for PPC.

COVID-19 in pediatric palliative care: what can we learn from the pandemic and possible future directions.

INTRODUCTION: Patients in pediatric palliative care (PPC) live with multiple comorbidities which represent a risk factor for severe form of COVID-19. METHODS: This monocentric retrospective study was performed at the PPC Center of Padua (Italy). Testing methodology, prevention strategies and infection characteristics were documented and compared during the first and second peak of SARS-CoV-2 infection. RESULTS: Between April-June 2020 a population swab screening was performed and a strong reduction of the habitual family support was observed. Between November 2020-January 2021 swab testing was limited to specific cases and the support network for families was partially restored. Incidence of COVID-19 was low, resulting in 0.04% of total pediatic cases in the Veneto Region. No severe forms were observed. CONCLUSION: The use of adequate preventive measures by families and support networks associated with testing in specific contests is safe, cost effective and has a minor impact on caregiver's care load.

A Tool for the Evaluation of Clinical Needs and Eligibility to Pediatric Palliative Care: The Validation of the ACCAPED Scale.

Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with life-limiting diseases to the most appropriate service and how to properly allocate health care resources. Objective: Recently, the Accertamento dei bisogni Clinico-Assistenziali Complessi in PEDiatria (ACCAPED) scale has been developed by a group of experts in PPC to evaluate the specific clinical needs of pediatric patients with a life-limiting disease. This study presents the validation of the ACCAPED scale. Design: Validation of ACCAPED scale was pursued by means of description and analysis of clinical vignettes representing patients with challenging-to-evaluate needs who have to be referred to the most appropriate service (community care, general PPC, and specialized PPC). The evaluation of vignettes according to the clinical experience of the experts represented the gold standard against which the validity of the ACCAPED scale was tested by groups with different levels of experience (experts, pediatricians, and health care providers (HCPs) not involved in PPC). Results: Results show a very high concordance between the evaluation of the vignettes through the ACCAPED scale and the evaluation by the clinical experience for experts in PPC and pediatricians. A less favorable grade of concordance has been recorded for HCPs not involved in PPC, suggesting that educational efforts to improve basic knowledge of PPC within the medical community are needed. Conclusions: Overall, this study suggests that the ACCAPED scale is a useful tool to improve rationalization of resources and eligibility criteria for PPC.

A consensus conference report on defining the eligibility criteria for pediatric palliative care in Italy.

BACKGROUND: The definition of the eligibility criteria of newborn, infant, child, or adolescent patients for palliative care (PC) is complicated by the fact that these patients generally present with very specific case histories that make it inadvisable to directly adopt existing PC protocols devised for adult patients. Thus, the goal of this paper is to define a standard set of criteria for establishing pediatric palliative care (PPC) eligibility. METHODS: The method adopted was that of the consensus conference. According to the guidelines issued by the Higher Institute of Health, the Board of the Italian Society for Palliative Care (i.e. steering committee) appointed a multidisciplinary group of eight health care professionals (i.e. doctors, nurses and psychologists) who worked from May 2014 to February 2016 to reach a consensus over PPC eligibility. This panel of relevant experts redacted a report summarizing all available scientific information concerning PPC, which was then submitted to the attention of a multidisciplinary jury composed of specialists and non-specialists of the field. The document thus produced was subsequently reviewed by an extended team of experts. RESULTS: The consensus conference drafted a final document determining the guidelines for PPC eligibility of newborns, infants, children, and adolescents suffering from either oncological or non-oncological diseases. CONCLUSIONS: This report provides health care providers with practical guidelines on how to define the eligibility of pediatric patients for PPC. Given the current situation in Italy, these guidelines will be instrumental in assisting the implementation of adequate generalist and specialist PPC services as well as in helping policymakers draft and implement national legislation pertaining to PPC.

Rights of the Dying Child: The Nurses' Perception.

AIM: The Charter of the Rights of the Dying Child was formulated as a professional guide for caring the child in the final stages. The study examines the nurses' degree of agreement with the Charter's principles and their perception of the implementation of those principles in hospital. MATERIALS AND METHODS: A multicenter, cross-sectional study to observe the nurses' positions about the 10 rights outlined in the Charter, using an online questionnaire in 5 pediatric hospitals in northern Italy. RESULTS: A total of 119 nurses (44.9%) completed the questionnaire. The majority (range: 86.6-100%) expressed their agreement with the Charter's principles (Likert ≥4). Lower ratings were reported in Charter's principles implementation items (range: 42.9-89.1%). Being older and working in a smaller hospital lead the nurses to overlook the child's right to be informed and to be given the opportunity to make decisions about his/her own life and death (p = 0.02, p < 0.01). Postgraduate training induced greater awareness of the dying child (p = 0.01). CONCLUSIONS: This study highlights the value of the Charter of the Rights of the Dying Child as a reference guideline for nurses working in pediatric hospitals. Better training is important to improve the nurse's communication skills and the pediatric palliative care should be offered to all families that have a child with incurable disease mostly in the end of life.

The rights of the dying child and the duties of healthcare providers: the "Trieste Charter".

PURPOSE: The death of a child is a devastating and tragic event for all those involved. This charter aims to help healthcare workers and people assisting terminally ill children to recognize some important rights of the child, with some related suggestions. We consider it important to have a trace of this process, based on the skillfulness of long-lasting experts. METHODS: In September 2012, a group of professionals working with children affected by incurable illness in Italy launched a project to formulate the charter. Trieste is the city where the group of professionals first met to start the project. The first step was a detailed literature search on the topic, the second step was an extensive discussion among the professionals (writing committee) to prepare a first draft; later (third step) the draft was revised by 38 experts in different areas, including patient and family representatives, and lastly (fourth step) the final version of the charter was prepared. RESULTS: We developed a document containing 10 rights and corresponding duties that could be applied to any clinical situation or circumstances and used as a guide by professionals and families caring for children in the terminal stages of an illness. CONCLUSIONS: The Trieste Charter proposes fundamental rights for children who are approaching the end of their lives. The charter will have achieved its purpose when every person caring for a dying child is capable of staying near the child until the last moments of his or her life, prepared to accept his or her death, ensuring both respect and dignity.

Barriers to the development of pediatric palliative care in Italy.

INTRODUCTION: In recent years the emergence of new types of patient, clinical situations, technological frontiers and "health" objectives have changed considerably the needs of ill children, this also concerns pediatric palliative care (PPC). In Italy, despite the introduction of legislation (Law 38/2010) stipulating the right of children and families to access appropriate services for pain control and pediatric palliative care, the availability of these services is still limited. AIM: The aim of this study is to highlight, through a review of the existing data and published literature, the critical issues that obstacle the planning and development of PPC services in Italy. RESULTS: Four main areas identified were: socio-cultural setting; types of patients and nature of diseases requiring PPC; training for PPC providers; regulatory and political issues. CONCLUSIONS: This type of analysis can provide the rational for advancing proposals and developing supportive, corrective and implementation strategies.

Use of Scrambler Therapy in Acute Paediatric Pain: A Case Report and Review of the Literature.

We report our clinical experience on the effect of Scrambler Therapy (ST) for a child with acute mixed pain refractory to pharmacological treatment. ST, recently proposed as an alternative treatment for chronic neuropathic pain in adults, is a noninvasive approach to relieve pain, by changing pain perception at brain level. It is safe and has no side effects. Further research is needed to assess its efficacy for acute pain and for paediatric population.