Need For Pediatric Palliative Care Research Articles

Evaluation of Demographic, Clinical Characteristics and Laboratory Values of Pediatric Patients Followed in Palliative Care

Background/Aims: The importance of pediatric palliative care centers, which we think is insufficient both in the world and in our country, is increasing. The aim of this study is to reveal the demographic, clinical and laboratory characteristics of pediatric patients followed in a palliative care center.
 Methods: In this retrospective study, demographic data (age, gender), laboratory findings (platelet, mean platelet volume, lymphocyte, neutrophil counts, glucose, sodium, potassium, urea) of pediatric patients followed up in an adult palliative care center between 18.10.2018 and 15.01.2023, creatinine, albumin and the C-reactive protein, CRP/albumin ratio, platelet/lymphocyte ratio and neutrophil/lymphocyte ratio) and clinical features (length of stay in PCU and survival) were evaluated.
 Results: It was determined that 61 pediatric patients between the ages of 2-17 were followed up in the palliative care center between 18 October 2018 and 15 January 2023. 65.6% of the patients were male and 6.6% were Syrian citizens. The duration of stay in the palliative care center was between 1-64 days. While 16.4% of the patients had tracheostomy, 14.8% needed home mechanical ventilator. Only 3 (4.9%) patients received parenteral nutrition. The diagnosis of admission to the palliative care center of 47 (77.0%) patients included in the study had neurological sequelae after head trauma. The mortality rate was 1.6%.
 Conclusions: It is obvious that the centers are insufficient in the face of the increasing need for pediatric palliative care. Although adult palliative care centers are compensating for this deficiency at this stage, it is clearly seen that the number of pediatric palliative care centers should be increased in the future.

Assessing the Need for Pediatric Palliative Care in the Six Arab Gulf Cooperation Council Countries.

Palliative care is an essential element of universal health coverage. However, palliative care services, particularly pediatric palliative care (PPC) services, are still inadequately developed in many countries, not least members of the Gulf Cooperation Council (GCC) (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, and the United Arab Emirates). Advocating for palliative care services requires data-driven estimates of the number of patients needing these services. To estimate the number of children living with life-threatening illnesses in the GCC countries requiring specialist and/or generalist palliative care service provision. Descriptive analysis of published cross-sectional epidemiological data. Subjects were from general and age-specific populations from individual GCC countries. The quantitative data on child population and mortality were collected from 2019 primary and secondary data sources. The need for PPC was estimated using mortality, incidence, and prevalence data from the Institute for Health Metrics and the Global Cancer Observatory. Our conservative analysis revealed that just under 22,000 children needed PPC in GCC countries in 2019, a minimum of 17.5 for every 10,000 children. There is a significant need for PPC services, suggesting that the medical needs of the pediatric population are currently not being fully met. Nationwide PPC services are essential to improve the quality of life of thousands of children in GCC countries by changing policies, professional education, and providing funding to palliative programs. To our best knowledge, this is the first study to highlight the clear and urgent need for the development of PPC services in the GCC countries.

Challenges in establishing optimal pediatric palliative care at the university hospital in Slovenia

The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting points for the establishment of accessible PPC with early involvement of patients in a tertiary-level children’s hospital. An intervention, presentation, and discussion on PPC were offered by the hospital PPC team to all employees in the hospital. A total of 237 participants (physicians 30.4%, nurses 49.4%, psychologists 8.4%, and others) completed a questionnaire before and after the intervention. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. The results were analyzed using Pandas and SciPy libraries in Python. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. However, the self-assessment of their ability to perform PPC did not increase. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC.Conclusions: More education and practical work tailored to the different professional profiles are needed, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.What is Known:• Every child and adolescent living with a life-limiting or life-threatening condition should receive pediatric palliative care (PPC) to alleviate suffering and enhance their quality of life. There exists a plethora of recognized barriers to the effective implementation of palliative care, specifically PPC. These barriers are often connected to the emotional burden of requesting PPC. Early identification and inclusion of patients is important for improving PPC in hospital settings. Finding strategies to overcome the barriers is crucial for improving the well-being and improving the quality of life of the patients and their families.• Early identification is only possible with a high level of knowledge and understanding of PPC among healthcare professionals. In a hospital setting where there are interdisciplinary palliative care teams, the inclusion is still only possible if all staff are capable of recognizing patients in need of PPC and are willing to start the process. Since most healthcare education systems only recently included PC into the healthcare curriculum, most of the professionals currently working in hospitals are only educated to the extent of self-initiative.What is New:• To bridge the existing gap in knowledge, the hospital PC team organized an intervention, presentation, and discussion on PPC, which was offered to all employees in the hospital who are in contact with patients. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. These four categories have not been tested together before. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. All the profiles that work together in a team were evaluated simultaneously for the first time.• The self-assessment of their ability to perform PPC did not increase—in fact, it decreased. This was unexpected, as existing literature establishes a link between education and quality of PC. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC. We re-established the importance of education and practical work tailored to the different professional profiles, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.

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

ContextSince 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. ObjectivesAn 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. MethodsA 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. ResultsFundamental 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. ConclusionThe 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.

Challenges in the Provision of Pediatric Palliative Care in Mexico: A Cross-Sectional Web-Based Survey.

Objective: An enormous need for pediatric palliative care (PPC) has been reported, especially in low- and middle-income countries (LMICs). However, the access to PPC is limited. This study identifies the current challenges in the provision of PPC and their severity from the perspective of healthcare professionals. Method: We conducted a web-based descriptive cross-sectional survey among healthcare professionals treating children in need of palliative care in Mexico in 2019. We used convenience sampling and snowball sampling to acquire participants. Results: Seventy healthcare professionals from Mexico participated. Participants were 64.3% female, on average 45.8 (SD = 10.9) years old, had an average of 15.84 (SD = 10.4) years of work experience and worked in 15 states. The three most severe barriers reported were: (1) Few teams and/or networks of out-of-hospital/domestic support; (2) Absence of training centres and continuing medical/paramedical education in PPC; and (3) Lack of legal, labor, and economic protection for parents who must stop working to be with their children. The barriers related to a lack of awareness and commitment, a lack of support, legal factors, and working conditions were rated highest. Participants considered increased awareness and better knowledge of PPC for all as the top priority, and particularly emphasized the need for better education and training of health professionals. Conclusion: We have identified several barriers to successful palliative care (PC) provision for children. Primarily, these are lack of awareness and commitment, especially of the health authorities and the medical professions, lack of personal and financial support, legal factors, and working conditions. The need to change and improve care exists at the policy level, the health professional level, and the public societal level.

Early Integration of Palliative Care in Single Ventricle Families: A Quality Improvement Project for Enhanced Family Support

Background: Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of mortality throughout their lifespan, particularly in their first year of life. The early involvement of pediatric palliative care (PPC) for children with SV physiology allows PPC providers to establish a relationship with the family and provide continuity throughout their journey. The intense care needed for these children and families predicates the need for PPC consults to be routine; however, medical staff are reluctant to broach the concept of PPC to families because of the association with …

Perceptions of Pediatric Palliative Care among Physicians Who Care for Pediatric Patients in South Korea.

Background: Despite advances in medical technology, resources for pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. Physicians' awareness of and willingness to provide general palliative care and refer to specialized palliative care are key elements for providing PPC. Objective: The aim of this study was to explore physicians' perceptions of PPC and the differences therein between nononcologists and oncologists. Design: A nationwide survey was conducted among physicians caring for children in 45 tertiary hospitals in South Korea. Measurements: A questionnaire was developed to identify the confidence in and need for PPC, appropriate timing for PPC referrals, and perceived barriers to PPC. Results: Overall, 141 physicians responded (response rate: 10.4%). Physicians' confidence in PPC was low, although most reported a high need for PPC. Lack of workforce and facilities specialized in PPC (60.2%) and patients' or caregivers' negative recognition (55.9%) were reported as the main barriers to PPC implementation. Specialized PPC services in children's hospitals were preferred as the model of care (84.2%). Compared with nononcologists, oncologists showed higher confidence levels in decision making and communication with patients and families with poor prognosis (p = 0.041) and education and providing end-of-life care (p < 0.001). Furthermore, oncologists preferred earlier referrals than did nononcologists. Conclusions: To promote PPC provision and improve the quality of life of pediatric patients and their families, it is important to introduce PPC early into disease-modifying treatment at any level of health care. Developing education and training curricula regarding PPC for health care providers caring for children with severe illnesses is crucial.

Research in Pediatric Palliative Care: Closing the Gap Between What Is and Is Not Known

Pediatric palliative care provides physical and psychosocial care to children with life-limiting illnesses and their families. Services are provided by physicians, nurses, volunteers, and other providers in a myriad of settings. Over the past 30 years, a portfolio of research has amassed on palliative care. Yet, much remains unknown, particularly about pediatric palliative care. This article is the first in a series and it provides a general overview of what is known and unknown about the provision and need for pediatric palliative care. Subsequent articles will focus on specific topics such as decision making and support care. The purpose of this series is to inform and promote discussion about research in pediatric palliative care.