Palliative Care In Pediatrics Research Articles

Brazilian Physicians’ Attitudes and Feelings Towards Palliative Care in Pediatrics

Brazilian Physicians’ Attitudes and Feelings Towards Palliative Care in Pediatrics

Benchmarking of educational videos on palliative care in pediatrics

Objective: To identify educational videos on Palliative Care in Pediatrics available in relevant organizations in different sectors. Method: A Benchmarking according to the JBI Institute method for systematic reviews. Videos were considered according to the inclusion criteria: educational videos (Population) on Palliative Care (Concept) in Pediatrics (Context). Videos more than ten years old or lasting longer than 20 minutes were excluded. An individualized search strategy was used for each data source: ANCINE, WHO, Brazilian Ministry of Health, ANCP, YouTube and Google. A descriptive analysis of the information obtained was performed. Results: 42 videos were selected for full evaluation. 2021 was the year with the most videos published (10; 23.8%). Most videos were testimonials (17; 40.4%) and aimed at the general public (33; 78.5%). The most frequent topic was the experience of caregivers (15; 35.7%). Conclusion: The results reinforce that the impact of education in Palliative Care has been little studied. The findings suggest the need to emphasize the production of educational videos on Palliative Care in Pediatrics aimed at training health professionals.

Influences that are connected to the beginning and conduct of palliative care in pediatrics

Influences that are connected to the beginning and conduct of palliative care in pediatrics

Simultaneous Home-Based Pediatric Hospice and Palliative Care: Characterizing the Population.

Background: Children and adolescents with serious conditions may benefit from simultaneous hospice and palliative care. Although the Affordable Care Act covers concurrent care, uptake has been limited. Limited descriptive data exist on receiving simultaneous community hospice and pediatric palliative care. Objective: Characterize a population of children and adolescents receiving simultaneous pediatric home-based hospice and palliative care (HBHPC). Design/Setting/Subjects: Post hoc analysis of retrospective study of N = 31 patients enrolled in pediatric HBHPC, with comparison to larger two-site sample receiving either hospice or palliative care at home. Measurement: Demographic and clinical data extracted from the electronic medical record. Results: Data characterizing the population receiving simultaneous care are presented; compared with those receiving either hospice or palliative care at home, the only significant differences were a greater proportion of decedent children and greater billable hours. Conclusions: Findings support the lack of meaningful distinction between hospice and palliative care in pediatrics.

Palliative care for hospitalized children: perception of the nursing team

Objective: to understand the perception of the nursing team of an intensive care unit and pediatric hospitalization about palliative care for hospitalized children. Methods: a descriptive, qualitative study was conducted with a large hospital pediatric intensive care and hospitalization unit's nursing team. Fourteen nursing professionals participated in the study, including nurses, technicians, and nursing assistants. Data were collected through semi-structured interviews and treated under content analysis. Results: The interpretative analysis of the interviews allowed the construction of three categories:"The knowledge of the nursing team about palliative care in pediatrics", "The challenges of the nursing team in performing palliative care in pediatrics", and "The benefits of palliative care in pediatric care from the perspective of the nursing team". Conclusions: The lack of knowledge and training of nursing professionals on palliative care are factors that can hamper their implementation and consolidation process in units that care for children with no possibility of cure, in addition to favoring decisions to be under the responsibility of the medical category, compromising the role of the multidisciplinary team and depriving patients of the benefits of palliative care.

Pediatric palliative care at home by Home Care Unit: how home nurses feel?

Our Home Care Unit (HCU) undertakes close to twenty pediatric palliative care engagements per year. We investigated the factors underlying such care by independent home health nurses. This was a retrospective, observational, single-center study. Home nurses who had provided palliative pediatric care in the past 16months were included. Fifty-six questionnaires were sent out (response rate of 44.6%). Eight home nurses had never provided pediatric palliative care. Three-quarters of the home nurses (76%) acknowledged having misgivings accepting these duties. The factors that facilitated providing this care were the availability of the HCU doctor and nurses, the proactiveness of the HCU team, and house calls. In 76% of cases, the involvement of the home nurses exceeded the strictly professional setting. Forty-six percent of the home nurses were amenable to undertaking another pediatric palliative care engagement, although 48% deemed the remuneration to be somewhat lacking. The analysis allowed us to identify several prerequisites for these care engagements: the availability and the proactiveness of the HCU team, communication, and planning. This study showed the pronounced personal involvement of home nurses in complex situations, with both the child and their entire family. Home nurses appear to be skilled at using the resources available to manage the exhaustion that can arise with such an engagement. Facilitating and respecting the choice to stay home of the child and their family was meaningful to them. The personal and professional enrichment were a source of motivation despite certain limitations (availability, remuneration).

23 Current Trends in Canada in Neonatal Palliative Care

Abstract Background The area of palliative care in pediatrics has been expanding, as evidence emphasizes the benefits of providing pediatric patients and their families with optimized care in cases of chronic illness and end-of-life. The majority of pediatric deaths occur in infants under one year, with significant portions of these deaths taking place in Neonatal Intensive Care Units (NICU). The expansion of palliative care into neonatal medicine is of significant importance, as symptom management and end-of-life care plays a vital role in providing complete care to these infants. Guidelines that have been put into place can vary significantly between centers. Published studies in neonatal palliative care (PC) describe these challenges, however little data currently exists specific to Canadian NICUs. Objectives The primary objective was to gather information about current practice trends and themes around barriers in neonatal PC. Design/Methods An anonymous survey was distributed to Canadian Level 3 NICU staff, including neonatologists, neonatal nurse practitioners (NP), and neonatal fellows through the Qualtrics platform. Surveys were distributed through email and responses tracked in the Qualtrics system. Results The survey response rate was 57. The majority of respondents were neonatologists (50%), with many having more than 5 years of experience. Provision of palliative care was common with 20/57 respondents being involved in 5 or more cases in the past year. Only 40% of respondents reported that neonatologists and neonatal NPs received palliative care training at their center. When education did exist, lectures (31%) and workshops (26%) were most common. 97% said their centre would benefit from more education. 53% of respondents said their center had an established guideline around neonatal PC, 20% did not know and 27% answered no. Only 8% of respondents who work at centres with a guideline found that it was consistently followed. Respondents were asked to identify barriers to implementation at their place of practice. Common responses noted challenges in NICU collaborations with maternal-fetal medicine and palliative care teams, as well as lack of education and providers’ personal beliefs. Lastly, respondents provided details of their guidelines or common practices in PC which has been collated and summarized. Conclusion The results provide a snapshot of the current palliative care practices in academic NICUs across Canada. Overall the results were positive with many centers having a guideline and some provider education. The perceived barriers highlight focus areas for future education and policy development, and emphasize the importance of improved collaboration moving forward.

Palliative Care in Pediatrics: Perception of the Multi-Professional Team

Introduction: Palliative care with the Cicely Saunders, in the 20th century and consists of the care and assistance to the patient and their families, ensuring better quality of life, aiming at controlling pain and suffering, with attention to physical aspects, spiritual, social and psychic. Objectives: To approach the respiratory and motor care of a pediatric patient in palliative care by nursing and physiotherapy, restricted to the bed, with non-progressive Hypoxic-Ischemic Encephalopathy, with metabolic syndrome under investigation, chronic pulmonary disease dependent on oxygen, alternating macronebulization and ventilatory prosthesis (PSV) for nocturnal breathing comfort. Methodology: This is an experience report lived by residents in a public university hospital in Rio de Janeiro, during the month of June 2018 in the pediatric ward. Through multidisciplinary action, interventions were carried out to improve the patient’s condition and minimize pain aspects through the care of the patient’s respiratory and motor functions and maternal guidance. Results and Discussion: Bearing in mind that palliative care focuses on minimizing pain and suffering, the actions presented above are in line with most of the published studies relating palliative care and improving quality of life with reducing the suffering of child and family members, guided by the bioethical principles of beneficence and non-maleficence. Conclusion: Through the applied procedures, greater independence of the ventilatory prosthesis was found, enabling the strengthening of the family bond, concomitant to the learning of the professionals involved related to palliative care in pediatric patients.

Palliative Care in Pediatrics: Perception of the Multiprofessional Team

Introduction: Palliative care with the Cicely Saunders, in the 20th century and consists of the care and assistance to the patient and their families, ensuring better quality of life, aiming at controlling pain and suffering, with attention to physical aspects, spiritual, social and psychic.Objectives: To approach the respiratory and motor care of a pediatric patient in palliative care by nursing and physiotherapy, restricted to the bed, with non-progressive Hypoxic-Ischemic Encephalopathy, with metabolic syndrome under investigation, chronic pulmonary disease dependent on oxygen, alternating macronebulization and ventilatory prosthesis (PSV) for nocturnal breathing comfort. Methodology: This is an experience report lived by residents in a public university hospital in Rio de Janeiro, during the month of June 2018 in the pediatric ward. Through multidisciplinary action, interventions were carried out to improve the patient’s condition and minimize pain aspects through the care of the patient’s respiratory and motor functions and maternal guidance.Results and Discussion: Bearing in mind that palliative care focuses on minimizing pain and suffering, the actions presented above are in line with most of the published studies relating palliative care and improving quality of life with reducing the suffering of child and family members, guided by the bioethical principles of beneficence and non-maleficence.Conclusion: Through the applied procedures, greater independence of the ventilatory prosthesis was found, enabling the strengthening of the family bond, concomitant to the learning of the professionals involved related to palliative care in pediatric patients.

Issues, Challenges, and Potential of Palliative Care in Pediatric Nursing: A Systematic Review

Background: Palliative care is an essential right for infants and children with a life-threaten­ing ill­ness. However, palliative care is still un­ava­il­able in some developing countries. This stu­dy aim­ed to explore the issues, challenges, and po­ten­tial of palliative care in pediatric nursing care. Subjects and Method: A systematic review was conducted by searching published articles in PubMed, CINAHL, and EMBASE databases, from year 2000 to 2018. The keywords used for this stu­dy included “palliative” AND “children”, “pal­lia­tive” AND “nursing” AND “care”, “palliative ca­re” AND “pediatric care”. The data were analyzed by PRISMA flow diagram. Results: Palliative care is evolving continuously, meeting new challenges, and expand­ing beyond the care of terminally ill pediatric patients. A ma­jor challenge in palliative care is effective com­mu­­nication. However, only a few communication trainings exist for nurses. Obstacles of palliative care in pediatrics nursing included clinical, ope­ra­tional, and financial factors. However, pallia­tive care has a substantial potential to reduce morbidity in infants and children. In addition, a cohort study conducted in 265 pedia­tric cancer patients reported that palliative care reduced pain and improved their life expectancy. Conclusion: Palliative care is a comprehensive app­roach of care and its delivery to pediatric pa­tients is challenging. It has a substantial potential in reducing infant and child morbidity. Keywords: palliative care, pediatric nursing, pal­li­ative nursing Correspondence: Aris Widiyanto. School of Health Sciences Mam­ba'ul 'Ulum, Surakarta, Jl. Ring Road Utara, Ta­wangsari, Mojosongo, Jebres, Surakarta, Central Java. Email: widiyantoaris99@gmail.com. Mo­bile: 081329209095 Journal of Maternal and Child Health (2020), 5(1): 167-172 https://doi.org/10.26911/thejmch.2020.05.02.06

The clinical practice guideline palliative care for children and other strategies to enhance shared decision-making in pediatric palliative care; pediatricians\u2019 critical reflections

BackgroundBecause of practice variation and new developments in palliative pediatric care, the Dutch Association of Pediatrics decided to develop the clinical practice guideline (CPG) palliative care for children. With this guideline, the association also wanted to precipitate an attitude shift towards shared decision-making (SDM) and therefore integrated SDM in the CPG Palliative care for children. The aim was to gain insight if integrating SDM in CPGs can potentially encourage pediatricians to practice SDM. Its objectives were to explore pediatricians’ attitudes and thoughts regarding (1) recommendations on SDM in CPGs in general and the guideline Palliative care for children specifically; (2) other SDM enhancing strategies or tools linked to CPGs.MethodsSemi-structured face-to-face interviews. Pediatricians (15) were recruited through purposive sampling in three university-based pediatric centers in the Netherlands. The interviews were audio-recorded and transcribed verbatim, coded by at least two authors and analyzed with NVivo.ResultsSome pediatricians considered SDM a skill or attitude that cannot be addressed by clinical practice guidelines. According to others, however, clinical practice guidelines could enhance SDM. In case of the guideline Palliative care for children, the recommendations needed to focus more on how to practice SDM, and offer more detailed recommendations, preferring a recommendation stating multiple options. Most interviewed pediatricians felt that patient decisions aids were beneficial to patients, and could ensure that all topics relevant to the patient are covered, even topics the pediatrician might not consider him or herself, or deems less important. Regardless of the perceived benefit, some pediatricians preferred providing the information themselves instead of using a patient decision aid.ConclusionsFor clinical practice guidelines to potentially enhance SDM, guideline developers should avoid blanket recommendations in the case of preference sensitive choices, and SDM should not be limited to recommendations on non-treatment decisions. Furthermore, preference sensitive recommendations are preferably linked with patient decision aids.

The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective

BackgroundHealth care providers’ perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care.MethodsFive mixed focus groups were conducted with 29 health care providers (oncologists, nurses, psychologists, and social workers) at five Swiss pediatric oncology group centers. The focus group interviews were analyzed using thematic coding.ResultsMost participants associated pediatric palliative care with non-curative treatment. They regularly reported difficulties in addressing palliative care services to families due to the strong stigma surrounding this term. They also thought that the notion of palliative care is very much linked to a policy context, and difficult to reconcile with children’s everyday life. To overcome these obstacles many participants used synonyms such as comfort or supportive care. A few providers insisted on the need of using palliative care and reported the importance of positive “word of mouth”.ConclusionsThe use of synonyms might be a pragmatic approach to overcome initial barriers to the implementation of palliative care in pediatrics. However, this tactic might ultimately prove to be ineffective as these terms might acquire the same negative connotations as palliative care. Positive word-of-mouth by satisfied families and healthcare providers might be a more sustainable way to advocate for pediatric palliative care than replacing it with a euphemistic term.

The Need for a Shared Understanding

Conceptual confusion is a primary barrier to providing quality palliative care. This study aimed to analyze pediatric palliative care (PPC) guidelines from a conceptual perspective to facilitate a shared understanding of palliative care in pediatrics. Five online databases were searched systematically, in addition to a Google search. Analysis focused on the language used to determine the domains of PPC and on the composition of the PPC team. Guidelines express consensus on 4 core domains: physical, psychological, social, and spiritual care. However, conceptual vagueness exists with respect to the latter 3 because terminology is used inconsistently both within and across guidelines. An inconsistent use of terminology affects the quality of PPC nursing in various ways. Therefore, a shared understanding and unambiguous language must be envisaged. Furthermore, although guidelines agree on the most prominent team members, they do not clearly indicate how these occupational groups should collaborate.

Professional Boundary Issues in Pediatric Palliative Care

This article explores the hypothesis that when a child has a life-limiting illness, the interpersonal boundaries between the patient, the patient's parents, and the health care team members differ from traditional provider, patient, and parent boundaries because of the unique dynamics of palliative care in pediatrics. Providers from the Journey's Palliative Care Team at Albany Medical Center completed a brief survey about working in pediatric palliative care and what ethical challenges they have faced in trying to maintain professional boundaries as new palliative care providers. A retrospective review of survey responses and a review of relevant literature offer insight into the various concerns reported by the Journey's team. Conclusions about delivering comprehensive ethically sound palliative care services may serve as a pathway for future studies.

Integrating palliative care in pediatrics.

An integrated palliative care plan with goals of therapy that change throughout a child's illness will reflect an individualized, child-centered, and family-centered approach to care. This care plan will act as a foundation to assist and guide all providers, from the primary pediatrician to the subspecialty surgeon, in providing interventions that will most benefit a child and add life to the child's years.

Palliative care in children with cancer: which child and when?

At a time of increasing interest in palliative care in pediatrics, pediatric oncology programs may be failing to deliver adequate palliation to children with cancer. In a recent study, parents of children who died on a pediatric oncology service reported that despite treatment at the end of life, their children's suffering was not adequately relieved and that parents were more likely than caregivers to recognize their children's suffering. Why do pediatric oncologists fail? First, death in children from cancer is a rare event. Second, few prospective trials in the field of pediatric palliative care describe and quantify symptoms during cure-directed care or at the end of life. This leads to a lack of evidence-based practice and forces the clinician to use personal experience and trial-by-error medical care. Third, pediatric oncologists and those charged with developing pediatric palliative care programs must deal with the different physiologic and developmental stages encountered while caring for infants, children, and adolescents. Fourth, education is needed for pediatric oncology caregivers in many areas of palliative care. Finally, reimbursement issues surround the palliative care field and are a major hindrance in developing effective integrated palliative care teams. These factors have also made it difficult to perform palliative care research in children. When discussing palliative care in children with cancer, where few die but many suffer, a paradigm shift must occur that does not equate palliative care with end-of-life care. A model on how we might make the transition from symptom control that we should offer to every patient to end-of-life care is discussed.

Ethics and Palliative Care in Pediatrics

Ethics and Palliative Care in Pediatrics

Ethics and palliative care in pediatrics.

Cynda Hylton Rushton is associate professor of nursing at the School of Nursing and on the faculty of the Phoebe R. Berman Bioethics Institute at Johns Hopkins University, as well as program director at Harriet Lane Compassionate Care Program, Baltimore, MD. She is director of the Nursing Leadership Consortium on End-of-Life Care project and the Nursing Leadership Academy on Palliative and End-of-Life Care, both funded by the Open Society Institute through its Project on Death in America. Currently she is chairwoman of Maryland’s Council on Quality Care at the End of Life. Contact author: 525 North Wolfe Street, Box 420, Baltimore, MD 21205; [email protected]. This article is the 12th in a series on palliative nursing that is supported in part by a grant from the Robert Wood Johnson Foundation. Betty R. Ferrell, PhD, RN, FAAN ([email protected]), and Nessa Coyle, PhD, NP, FAAN ([email protected]), are the series editors. The author of this article has no significant ties, financial or otherwise, to any company that might have an interest in the publication of this educational activity.