Palliative Care For Children Research Articles

Ethical Guidelines in Palliative Care for Children: Analysis of Russian Legislation and Methodological Recommendations

Ethical Guidelines in Palliative Care for Children: Analysis of Russian Legislation and Methodological Recommendations

Assistência de enfermeiros a crianças em cuidados paliativos: estudo à luz da teoria de Jean Watson

Abstract Objective To understand the care provided by nurses to children with cancer in palliative care in the light of Jean Watson's Theory. Method Qualitative study, based on Jean Watson's theory, carried out with ten clinical nurses from a reference hospital for cancer in João Pessoa, PB. The collection of empirical material took place between October and December 2020, through the semi-structured interview technique, later analyzed under the Content Analysis Technique. Results The nurses’ testimonies brought strong reflections on knowledge in the field of oncology nursing, with an emphasis on assistance to children in palliative care, since the strategies implemented in this scenario are consistent with Jean Watson's Theory, based on the elements contained in the Clinical Caritas Process. Conclusion and Implications for practice The role of nurses based on humanized care, with the scope of promoting comfort and pain relief, and dialogical, playful and transpersonal practices, is essential in this disease process. In this way, the identified strategies may contribute to the clinical practice of nurses, when caring for children with cancer in palliative care, based on Jean Watson’s Theory.

Clinical-epidemiological profile of children in palliative care

Resumen Este artículo pretende analizar el perfil clínico-epidemiológico de los niños bajo cuidados paliativos en un hospital pediátrico de referencia en Ceará (Brasil). Este es un estudio de cohorte retrospectivo, cuantitativo, de tipo serie de casos, realizado con 56 pacientes de hasta 2 años, 11 meses y 29 días de edad. Las enfermedades más prevalentes fueron las del sistema nervioso y circulatorio, malformaciones congénitas, malformaciones y anomalías cromosómicas. Las condiciones incapacitantes severas y no progresivas fueron el criterio principal para incluir en paliación. En la conferencia familiar, la madre estuvo presente en el 94,6% de las ocasiones. El desenlace predominante fue la muerte (58,9%) asociada significativamente con enfermedades del sistema circulatorio, sistema nervioso, uso de aparato respiratorio y ventilación mecánica, sector demandante y cuidados paliativos. Los cuidados paliativos pediátricos no relacionados con niños con cáncer generan una nueva demanda a nivel hospitalario, requiriendo un equipo capacitado y sensible a esta nueva realidad.

Clinical-epidemiological profile of children in palliative care

Resumo O objetivo deste artigo é analisar o perfil clínico-epidemiológico de crianças acompanhadas por um serviço de cuidados paliativos em um hospital pediátrico de referência no Ceará. Trata-se de estudo de coorte retrospectivo, quantitativo, do tipo série de casos, realizado com 56 pacientes de até 2 anos, 11 meses e 29 dias de idade. As doenças mais comuns foram as do sistema nervoso, circulatório, malformações congênitas, deformidades e anomalias cromossômicas. As condições incapacitantes graves e não progressivas foram o principal critério para inclusão na paliação. Na conferência familiar, a mãe esteve presente em 94,6% das ocasiões. O desfecho predominante foi óbito (58,9%), apresentando associação significativa com as doenças do aparelho circulatório, sistema nervoso, uso de dispositivo respiratório e ventilação mecânica, setor solicitante e cuidados paliativos. Conclui-se que os cuidados paliativos pediátricos não relacionados a crianças com câncer têm gerado uma nova demanda a nível hospitalar, exigindo uma equipe capacitada e sensível a essa nova realidade.

Parental perspectives on home-based palliative care in children with advanced cancer

Parental perspectives on home-based palliative care in children with advanced cancer

Nurses assistance to children in palliative care: a study in the light of Jean Watson's theory

Resumo Objetivo Compreender a assistência de enfermeiros a crianças com câncer em cuidados paliativos à luz da Teoria de Jean Watson. Método Estudo qualitativo, tendo como referencial a teoria de Jean Watson, realizado com dez enfermeiros assistenciais de um hospital de referência em câncer de João Pessoa, PB. A coleta do material empírico ocorreu entre outubro e dezembro de 2020, por meio da técnica de entrevista semiestruturada, posteriormente analisado sob a Técnica de Análise de Conteúdo. Resultados Os depoimentos dos enfermeiros trouxeram reflexões contundentes acerca dos conhecimentos no campo da enfermagem oncológica, com ênfase na assistência a crianças em cuidados paliativos, uma vez que as estratégias implementadas neste cenário são coerentes com a Teoria de Jean Watson, pautada nos elementos contidos no Processo Clinical Caritas. Conclusão e Implicações para a prática A atuação dos enfermeiros a partir de uma assistência humanizada, com o escopo na promoção de conforto e alívio da dor e nas práticas dialógicas, lúdicas e transpessoais, é imprescindível neste processo de doença. Deste modo, as estratégias identificadas poderão contribuir para a prática clínica de enfermeiros ao cuidar de crianças com câncer em cuidados paliativos, fundamentada na Teoria de Jean Watson.

Comment rechercher l’intérêt supérieur de l’enfant lors d’une prise en charge palliative ? Analyse de 2 études de cas complexes

Cadre de la recherche : Dans le cadre de la mission d’une équipe de liaison pédiatrique spécialisée en soins palliatifs pédiatriques (SPP) en Belgique, cet article propose d’analyser les enjeux décisionnels face à l’intérêt supérieur de l’enfant dans une étude de deux cas cliniques complexes qui ont impacté cette équipe et ont questionné leur approche professionnelle. Objectif : Cet article met en évidence la notion de l’intérêt supérieur de l’enfant se basant sur des enjeux décisionnels relatif à sa santé. Lorsque les avis des parents et de l’équipe soignante divergent quant au traitement à donner à un enfant en situation de soins palliatifs pédiatriques, nous analyserons les enjeux liés au processus décisionnel partagé (PDP) ainsi qu’aux facteurs éthiques pour identifier des pistes de compréhension et de solutions. Méthodologie : Nous avons choisi pour méthode l’étude de deux cas cliniques complexes vécus à domicile par une équipe de liaison spécialisée en SPP. Cette méthode qualitative permet d’analyser la situation dans sa singularité et sa globalité. Il s’agit d’une étude de cas intrinsèque, basée sur un problème pratique rencontré, une confrontation personnelle à une situation professionnelle donnée complexe (Duport, 2020). Résultats : Notre recherche expose la complexité de la trajectoire décisionnelle et la nécessité de prendre en compte les systèmes d’influence dans la prise de décision, ainsi que l’importance pour l’équipe de soins de prendre du recul et d’avoir une grille de lecture éthique adaptée à la situation donnée. Conclusions : La prise en charge d’un enfant gravement malade suivi en SPP est évolutive et non linéaire. La prise de décision partagée (PDP) formalisée entre médecins, l’enfant et ses parents, et l’équipe soignante permet de prendre en compte toutes les composantes rentrant dans ce processus et vise à respecter l’intérêt supérieur de l’enfant. Les différents critères créent un climat de confiance indispensable à la bonne prise en charge de l’enfant. Contributions : Le blocage dans la relation thérapeutique est un symptôme de perte du climat de confiance avec risque de repli, mais les systèmes peuvent parfois autogénérés leur propre solution, ce qui démontre l’importance de développer et de former les équipes à l’approche de la prise de décision partagée.

The Declaration on Palliative Care in a Pandemic: report of the African Ministers of Health Meeting and the 7th International African Palliative Care Conference, held from the 24th to 26th August 2022 in Kampala, Uganda and virtually.

The 7th International African Palliative Care Conference and the 4th African Ministers of Health Meeting were held in Kampala from the 24th to 26th August 2022. The theme of the conference - Palliative Care in a Pandemic - reflected the reality of palliative care provision on the continent, and the experience of patients and providers over the past 2 years. It was hosted by the African Palliative Care Association and the Worldwide Hospice Palliative Care Alliance with co-sponsors being the International Children's Palliative Care Network, the International Association of Hospice and Palliative Care, Global Partners in Care and Palliative care in Humanitarian Aid Situations and Emergencies. The conference was held in Kampala as a hybrid event, with a mix of in-person, pre-recorded and virtual presentations. The African Ministers of Health Meeting held on the 24th August was attended by delegates from 25 Ministries of Health, with 92 participants in-person and 122 attending virtually. Hosted by the Minister of State for Primary Health Care in Uganda, the participants at the meeting endorsed a Declaration on Palliative Care in a Pandemic. The main conference, held on the 25th and 26th August, was attended by 334 delegates from 40 countries, 199 (60%) of whom attended in-person. Key themes discussed throughout the conference included: contagious compassion; building a business case and evidence for palliative care in Africa; palliative care policy, funding and sustainability; the importance of collaboration and global partnerships; palliative care for all ages, children through to the elderly, and all conditions; the need to be innovative and creative, embracing technology; and a feeling of hopefulness in the future of palliative care in the region as we go forward together. The impact of the pandemic has been significant on everyone. Despite this, and the limitations imposed by the pandemic, the African palliative care community has come through it stronger, is committed to continuing the development of palliative care across the region, working together and is hopeful for the future.

EOLP-02. THE EFFECT OF CLINICAL TRIAL ENROLLMENT ON SPECIALTY PALLIATIVE CARE RECEIPT IN PEDIATRIC AND YOUNG ADULT PATIENTS WITH HIGH GRADE GLIOMAS

Abstract BACKGROUND Palliative care has been shown to provide numerous benefits to children with cancer. Pediatric patients with high grade glioma (HGG) are particularly well suited for early involvement of palliative care given their high symptom burden and relatively poor prognosis. However, a recent study revealed that pediatric patients with primary central nervous system malignancies missed multiple opportunities for appropriate palliative care involvement. We hypothesize that clinical trial enrollment may adversely impact palliative care involvement for children and young adults with HGG. METHODS We identified a cohort of 43 deceased patients with HGG treated at our institution. IRB exemption was obtained. For each patient, the electronic medical record was reviewed to collect demographic, diagnostic, clinical trial, treatment, and palliative care information. Statistical analysis was performed, employing Fisher exact and t tests. RESULTS Overall, 72% (31/43) of patients had at least one visit with a specialty palliative care provider. 56% (24/43) of patients enrolled in a clinical trial with HGG-directed therapy, with 71% (17/24) of patients who enrolled in a clinical trial receiving specialty palliative care compared to 74% (14/19) of patients who were not on a trial (p = 1.000). Among patients who received palliative care, there was no statistically significant difference in the timing of palliative care involvement, measured from the date of first palliative care contact to date of death, for patients who enrolled in a clinical trial (mean = 177 days) compared to those who did not (mean = 113 days, p = 0.180). CONCLUSIONS As our understanding of the genomic landscape of pediatric brain tumors increases, it can be expected that patients electing to enroll in targeted therapy clinical trials will also increase. As such, it is reassuring that our data suggest trial participation does not adversely impact the receipt of palliative care in children with HGG.

Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions.

This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected through semistructured interviews. A total of 6 parents actively caring for a child with life-threatening conditions and 7 bereaved parents participated in this study. A total of 707 significant statements, 43 subthemes, and 16 themes according to 6 structured matrices (advance care planning and symptom control, psychological and spiritual care, supporting everyday lives, end-of-life care and bereavement support, delivery model of pediatric palliative care, and unmet needs within current services) on the care and bereavement experiences of parents of children with life-threatening conditions were derived. Palliative care for children is a multidisciplinary approach to evaluate, prevent, and manage multifaceted symptoms and to support children with life-threatening conditions and their families. Our findings suggest that parents of children with life-threatening conditions in South Korea present multidimensional needs across the diagnostic groups and the illness trajectories and inform policy makers and health care professionals to design a pediatric palliative care delivery model. Further studies examining the unmet needs are required to enhance the quality of pediatric palliative care.

Reflecting on palliative care for children, young people and their families: a revised model.

The unique needs of children requiring palliative care and their families have been increasingly recognised on a global scale. The complexities of such care, the unpredictability of the illness trajectory and increased choice in terms of where care is provided has led to challenges for nurses/practitioners striving to provide optimal care for these families. Working in partnership with children and families and reflecting on practice are key issues in providing care and support. Reflective models are frequently used as a tool for two reasons: firstly, to reflect on practice with the aim of quality improvement; secondly, to help practitioners explore difficult or challenging aspects of care negotiated with families. Here, the authors report on a specialised model that has been developed and updated for use within children's palliative care. For reasons of confidentiality, a fictitious case study is used to illustrate how this model could be implemented during a debriefing session following the death of a child. While more research is needed, initial trials of the model by the authors suggests that using specialised reflective models and frameworks can help to facilitate such discussions in children's palliative care.

Reimagining a children's palliative care educational programme for registered nurses in response to the COVID-19 pandemic

BackgroundChildren with life-limiting conditions are a unique population with multiple health and social care needs. Key literature indicates the need for education to support registered nurses providing care, including palliative care, to these children. In response to the COVID-19 pandemic, a palliative care programme was converted to an online programme, adopting a blended approach between national and regional facilitators. ObjectivesTo assess nurses' satisfaction with a re-designed palliative care programme centred around the care of children with life-limiting conditions, including their perceptions of the online format. Design and methodsA descriptive correlational design and online survey was used to explore the participants' perception of the content and online delivery of the Care of the Child with a Life-Limiting Condition programme. Nine sessions, comprised of five national and four regional webinars, were delivered. ResultsAttendees registered (n = 169) from throughout the Republic of Ireland, with 130 attending all webinars. Attendees stated online delivery of education increased their accessibility to highly qualified experts. The short, concise nature of sessions was well received. Online delivery and recorded sessions contributed to convenience with the ability to access and process information in attendees' own time being welcomed. However, the negative impact of losing face-to-face interactions was noted, including the opportunity to build relationships with colleagues caring for children with life-limiting conditions. ConclusionsResults suggest that the redesigned online programme contributed to participants' knowledge, encouraged participation and increased accessibility. An e-Learning model enables specialised education to be more equitable and accessible, ensuring regional areas are not disadvantaged due to geographical remoteness from tertiary educational centres. However, the lack of face-to-face contact was acknowledged as a hindrance to socialisation and networking. When developing future programmes, focus should be put on creating opportunities for networking and social development to compensate for the lack of face-to-face contact.

Palliative care strategies of Iranian nurses for children dying from cancer: a qualitative study.

Children with cancer, who are at the end-of-life and facing death, need access to palliative care services, and nurses play an important role in providing these services. To explore the palliative care strategies of Iranian nurses for children dying from cancer. This was a qualitative study with conventional content analysis. Participants were 8 nurses, 1 social worker, 1 psychologist, 2 children, and 4 mothers from the Paediatric Oncology Unit in Semnan, Islamic Republic of Iran, who had experience in palliative care for children with cancer. Data were collected from individuals using in-depth, unstructured and semi-structured interviews and analysed using the Graneheim and Lundman approach. Data rigour increased with credibility, dependability, transferability, and confirmability criteria. Data analysis led to the emergence of the concept of "perceived compassion". This theme was derived from the 2 main categories of "feeling the shadow of death on the child" and "comforting accompaniment". Feeling the shadow of death on the child included the subcategories of "pre-death arrangements" and "an opportunity to continue interactions". Comforting accompaniment was derived from 3 subcategories: "preparing to announce the child's death", "extra-role sympathy" and " post-death interactions". Perceived compassion was the main strategy used by Iranian nurses to provide palliative care to children dying from cancer.

Assessment of disabled paediatric patients for accessing palliative care: validation of a new tool

BACKGROUND: By reviewing the literature, no work has emerged about the presence of a Palliative Care Network dedicated to the Italian disabled pediatric population. however, there is an increase in the prevalence of children with ingrained illness and / or serious disabilities who are in need of such treatment. The difficulty in defining when a child becomes incurable persists. Along with the diagnosis of incurability, the other crucial factor is the extent of "care needs".OBJECTIVES: the aim of the study is to build an assessment tool for defining access criteria to Pediatric Palliative Care for patients with advanced illness and / or severe disability. B METHODS: an observational, prospective, multicenter study was conducted, by using the Clinical Assessment Tool (CAT) scale, which has been proposed by the paediatric hospice of Padua (Italy) without formal validation. We studied a non-randomized sample of 101 patients from five healthcare facilities in Northern Italy. We modified the CAT scale by adding items from other tools used in Palliative Care. The study was divided into two periods at a distance of one month, in order to assess the patients’ clinical evolution. RESULTS: internal consistency of the CAT tool was good ​​(alpha=0.83). Explorative factor analysis showed acceptable loadings on each item. Positive and negative predictive values ​were 0.97 and 0.98, respectively. CONCLUSIONS: the scale is reliable in identifying individuals in need of Pediatric Palliative Care and seems a promising tool for assessing the needs for palliative care in children with ingrained illness and/or severe disability.

The impact of clinical trial enrollment on specialty palliative care utilization in pediatric patients with high-grade gliomas.

10057 Background: In pediatric oncology patients, palliative care has been shown to provide numerous benefits, including less intense clinical care in the last month of life, improved symptom management, and dedicated family communication. Pediatric patients with high grade glioma (HGG) represent a patient population particularly well suited for early involvement of palliative care given their high symptom burden and relatively poor prognosis. However, a recent study revealed that pediatric patients with primary malignant central nervous system (CNS) tumors missed multiple opportunities for appropriate palliative care involvement throughout their disease courses. We hypothesize that clinical trial enrollment may lead to a lack of or delay in involvement of palliative care in children and young adults with HGG. Methods: We identified a cohort of 43 deceased pediatric patients with HGG who received care at our institution. IRB exemption was obtained. For each patient, the electronic medical record was reviewed to collect patient demographics, cancer diagnoses and outcomes, clinical trial enrollment, non-clinical trial treatments, and palliative care involvement. Statistical analysis was performed comparing patients enrolled in trials to those not enrolled, employing Fisher’s exact tests for categorical data and t tests for numerical data. Results: Overall, 72% (31/43) of patients had at least one visit with a specialty palliative care provider. 56% (24/43) of patients enrolled in a clinical trial with HGG-directed therapy. 71% (17/24) of patients who enrolled in a clinical trial received specialty palliative care compared to 74% (14/19) of non-trial participants (p = 1.000). Similarly, among patients who received palliative care there was no statistically significant difference in the timing of palliative care involvement, measured from the date of first palliative care contact to date of death, for patients who enrolled in a clinical trial (mean = 177 days) compared to those who did not (mean = 113 days, p = 0.180). Of the 24 patients enrolled in clinical trials, only 7 (29%) had palliative care involvement prior to initiation of study treatment. Conclusions: As our understanding of the genomic landscape of pediatric brain tumors increases, it can be expected that patients electing to enroll in targeted therapy clinical trials will also increase. As such, it is reassuring that our data suggest that trial participation does not interfere with the receipt of specialty palliative care in children with HGG. While not statistically significant, initial palliative care involvement trends toward occurring in closer proximity to death in the patients who are not enrolled on a clinical trial. Overall, it is encouraging that in our pediatric HGG patient cohort, enrollment in clinical trials does not appear to have an adverse impact on specialty palliative care involvement.

Comparing Pediatric Nephrologists’ and Palliative Care Physicians’ Perspectives on Palliative Care for Children with End-Stage Kidney Disease: A National Survey Study (GP727)

Comparing Pediatric Nephrologists’ and Palliative Care Physicians’ Perspectives on Palliative Care for Children with End-Stage Kidney Disease: A National Survey Study (GP727)

The COVID-19 Pandemic: Early Ripple Effects in Pediatric Palliative Care.

Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of healthcare systems throughout the world. Although the value of life-affirming palliative care (PC) has been shown across many domains, funding and acceptance of palliative care teams have been variable: some hospital systems have free-standing, dedicated interdisciplinary teams while, in many instances, palliative care services are provided “pro bono” by individuals with a special interest in the discipline, who provide PC in addition to other responsibilities. In this article, we hope to highlight some of the observations on the early effects of the COVID–19 pandemic on the provision of PC in children.

Pediatric Nephrologists’ Perspectives on Palliative Care for Children with Chronic Kidney Disease: A National Cross-Sectional Survey (S554)

Pediatric Nephrologists’ Perspectives on Palliative Care for Children with Chronic Kidney Disease: A National Cross-Sectional Survey (S554)

Making room for life and death at the same time \u2013 a qualitative study of health and social care professionals\u2019 understanding and use of the concept of paediatric palliative care

BackgroundThe concept of pediatric palliative care (PPC) is applied differently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept of PPC and the aim of this study was to explore the concept of PPC from the view of HCP in a paediatric setting.MethodsWe employed an explorative and descriptive design and conducted four focus groups with a total of 21 HCPs working in hospitals with children in palliative care. The data were analysed using qualitative content analysis.ResultsThe data analysis of the concept of pediatric palliative care resulted in two themes. The first theme “A frightening concept that evokes negative emotions,” contains categories to explore the meaning, named “An unfamiliar and not meaningful concept, “A concept still associated with death and dying” and “Healthcare professionals’ responsibility for introducing and using the concept and, to obtain a common meaning.” The second theme was named “A broad and complementary concept,” containing the categories “Total care for the child and the family,” “Making room for life and death at the same time” and “The meaning of alleviation and palliative care.”ConclusionsThe included HCPs reflected differently around PPC but most of them highlighted quality of life, total care for the child and the child’s family and interdisciplinary collaboration as core elements. Attention to and knowledge among HCPs might change the perception about PPC from a frightening concept to one that is accepted by all parties, implemented in practice and used as intended. However, our study reveals that there is still some work to do before PPC is understood and accepted by all those involved.

Palliative Care in Children With Advanced Heart Disease in a Tertiary Care Environment: A Mini Review.

Palliative care for children continues to evolve. More recently, this has also been true in the field of pediatric cardiology, particularly for children with advanced heart disease. In these children, similarly to children with cancer, treatment successes are offset by the risks of long-term morbidities, including premature death. This mini review aims to provide an overview of current knowledge on children suffering from advanced heart disease, their medical care during various phases of illness (including the palliative and end-of-life phase), symptom burden, experiences of parents, prognostic understanding of parents and physicians, and current status of the involvement of pediatric palliative care. In conclusion, the suffering of these children at the end of their young lives is pronounced and many parents feel prepared neither for medical problems nor for the child’s death. An effective and mutually trusting partnership between pediatric cardiology and pediatric palliative care would appear to be a prerequisite for the timely involvement of palliative care in further supporting these children and their families.