Palliative Care In Pediatric Oncology Research Articles

Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families

Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes towards PC is crucial to improving PC utilization. This study aimed to explore bereaved parent attitudes towards PC in pediatric oncology. This study used data from Alex's Lemonade Stand: My Childhood Cancer Bereavement Survey. The survey included questions regarding bereaved parents' attitudes towards PC. The survey included 72 bereaved families. Parents completed the survey a median of 11 years after their child's death. PC was involved in 71% of cases. These families were more likely to have do not resuscitate (DNR) orders, an advanced care plan, hospice care, a planned death location, and for their child to die outside the hospital. Although most parents (86%) agreed that it is a doctor's obligation to inform all patients with cancer about PC. PC referrals appeared to happen later than parents preferred. Lack of PC involvement was primarily due to PC not being offered or sudden death of the child. Parental hesitancy should not be viewed as a barrier to PC involvement. Although parents held mixed attitudes about PC, families accepted PC, desired earlier referrals, and believed it was a doctor's obligation to offer PC. These findings highlight the need for timely PC referrals, improved education, and increased awareness of PC services to enhance the integration of PC in pediatric oncology.

Paediatric oncologists' perspectives on Strategic solutions to develop Integrated Cancer Palliative Care: feedback intervention theory as an explanatory Framework.

Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative care referral. Strategic solutions to develop integrated palliative care was a critical study theme. In this paper, we have explained and interpreted these strategic solutions through the lens of feedback intervention theory. The study findings were interpreted using Kumar's six-step approach that enabled systematic evaluation of a theory's appropriateness and alignment with the researcher's paradigm, methodology, and study findings. It also explained how theory informed analysis and elucidated challenges or the development of new models. The feedback intervention theory appraises the discrepancy between actual and desired goals and provides feedback to improve it. Strategic solutions generated from the study findings were coherent with the aspects elucidated in theory, like coping mechanisms, levels of feedback hierarchy, and factors determining the effect of the feedback intervention on performance. Paediatric oncologists suggested integrating palliative care providers in the team innocuously, improving communication between teams, relabelling palliative care as symptom control, and working with a skilled and accessible palliative care team. The paper proposes an infinite loop model developed from the study, which has the potential to foster integrated palliative care through excellent collaboration and continuous feedback. Applying feedback intervention theory can bridge the gap between actual and desired practice for integrated cancer palliative care in paediatric oncology.

Chinese Providers' Perspectives on Early Integration of Palliative Care in Pediatric Oncology: A Mixed-Methods Study.

Internationally, early integration of palliative care in pediatric oncology has been widely recognized. However, little is known about the perspective of Chinese providers in this regard. The aim of this study was to explore the perspective of Chinese providers on the early integration of palliative care in pediatric oncology. This was a convergent mixed-methods study with a survey among 141 Chinese providers (101 nurses, 38 oncologists, and 2 social workers) and 12 individual interviews (5 oncologists, 5 nurses, and 2 social workers). Three categories existed by comparison and merging of quantitative and qualitative findings: (1) attitudes toward early integration of pediatric palliative care: 75% of the participants endorsed early integration because it would bring benefits to patients and their families-participants had concerns about misunderstandings of palliative care among other stakeholders; (2) patient-provider interactions relating to early integration: participants held contradictory views toward the impact on and influencers of early integration regarding patient-provider interactions; and (3) participants suggested a system to support early integration by addressing parents' misconceptions and providers' training, and institutional facilitation. Chinese pediatric oncology providers generally exhibit a reserved willingness toward the early integration of palliative care. They agree that palliative care would be beneficial but have concerns about providing structural support and addressing cultural influencers. Findings of this study emphasize the significance of convening stakeholders and establishing a pediatric palliative care-friendly system in a developing country, particularly by addressing structural support, resource allocation, clarified responsibilities, and capacity building.

The Impact of Qualification and Hospice Education on Staff Attitudes during Palliative Care in Pediatric Oncology Wards-A National Survey.

Our knowledge about the attitudes of healthcare staff to palliative care in pediatric oncology is scarce. We aimed to assess their perceptions of palliative care in Hungary and find answers to the question of how to provide good palliative care for children. Physicians (n = 30) and nurses (n = 43) working in the field of pediatric oncology (12 of them specialized in hospice care) were interviewed. Palliative care practice (communication, integration of palliative care, professionals' feelings and attitudes, and opportunities for improvement) was assessed by semi-structured interviews evaluated in a mixed quantitative and qualitative way by narrative categorical content analysis and thematic analysis. All providers displayed high negative emotions, positive evaluations, and used many active verbs. Nurses showed higher levels of denial, more self-references, and were more likely to highlight loss. Physicians emphasized the importance of communication regarding adequate or inadequate palliative care. Hospice specialists showed a higher passive verb rate, a lower self-reference, a lower need for psychological support, and a greater emphasis on teamwork and professional aspects. Our results show that nurses are more emotionally stressed than doctors in palliative care in pediatric oncology. To our knowledge, a study comparing doctors and nurses in this field has yet to be carried out. Our results suggest that pediatric oncological staff can positively evaluate a child's palliative care despite the emotional strain. Regarding hospices, professional practice in palliative care may be a protective factor in reducing emotional distress and achieving professional well-being.

Embracing paediatric palliative care in paediatric oncology from diagnosis onwards.

Paediatric palliative care aims to support children and young people with life-limiting or life-threatening conditions, and their families, from the time of diagnosis. Early integration within oncology has been recognised as having benefits for all involved, whatever the outcome may be. Through improved communication and advance care planning, it enables user-centred care, where concerns about quality of life, preferences and values are given the same relevance as cutting-edge therapy. Challenges to the integration of palliative care within paediatric oncology include raising awareness and providing education, whilst searching for the best care model and adapting to an ever-changing therapeutic scenario.

Caregiver preferences for palliative care in pediatric oncology: an educational intervention

ABSTRACT Pediatric Palliative Care (PPC) teams provide comprehensive care to children and families managing chronic illness. Misconceptions about PPC may account for low utilization. This study examined the influence of an educational handout on caregiver knowledge and preferences for PPC. Forty pediatric oncology caregivers were recruited for the pre/post design study. Mean changes from pre- to post-intervention were examined. At posttest, caregivers were significantly more knowledgeable (p < .001, d = −1.60) and had more favorable preferences toward PPC (p < .001, d = −0.52). Thus, a brief and low-cost educational intervention can improve caregiver knowledge of and opinions regarding PPC.

The care for oncologic patients undergoing pediatric palliative care and the griefs of a health team

Introduction: The health care offered to children and adolescents with cancer has been expanded, giving space to orthothanasia and palliative care, with a comprehensive look at the subject facing the threat to the continuity of life, as well as challenging professionals to access issues related to grief. Objectives: In order to explore this reality, this study intended to analyze how professionals experience grieving processes in the exercise of palliative care in pediatric oncology. Method: A qualitative research was conducted with the participation of 23 health professionals working in palliative oncology and pediatric care, who responded to a semi-structured interview script, whose analyses were performed with the support of the IRaMuTeQ (Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires) software. Results: The results were organized in four classes: in class 1, the specificities of the treatment of children with cancer and other aspects related to chronic illness are portrayed; class 2 shows that health trainings do not prepare professionals to deal with death and with patients with no possibility of cure, and these professionals have (pre-) concepts about palliative care; class 3 highlights the principles of palliative care and other factors of the work in this therapy; and class 4 deals with the bonds formed by professionals and their grieving experiences. Conclusions: Cure must not be a requirement for the provision of care in relation to children with cancer that can benefit from the adoption of palliative care therapy and the validation of the sensitivity of professionals.

Medical Communication during the Transition to Palliative Care in Pediatric Oncology in Hungary-The Parents' Perspective.

The transition to palliative care (PC) is a critical aspect of pediatric oncology, and it requires a high level of communication skills from doctors, which could be best judged by the parents of children who have died from cancer. Our aim was to explore the parents’ perspectives regarding the timing of the consultation on the implementation of PC, as well as facets of verbal and nonverbal communication in Hungary. Semistructured interviews were conducted with parents who had lost a child to cancer within the past 1–5 years. Interview transcripts (n = 23) were scrutinized with interpretative phenomenological analysis. The parents frequently associated palliation with end-of-life care and they clearly delimited the transition to PC after curative treatments had been exhausted. The parents were ambivalent with regard to the use of the word “death” during this consultation, and they often did not receive information on what to expect (e.g., regarding symptoms) or on who to turn to for further information or support (e.g., concerning bereavement). Although significant progress could be observed in the organization of pediatric palliative care in Hungary, there is still no widely accepted communication method for the transition to sole PC. There is a need for a culturally sensitive approach to refining the recommendations on the word use and communication protocol in pediatric PC in Hungary.

Palliative Care in Pediatric Oncology and Hematopoietic Stem Cell Transplantation.

To summarize pediatric palliative care (PPC) research from 2016 to 2021 as it intersects with pediatric oncology and hematopoietic stem cell transplantation (HSCT). Children and adolescents with cancer who receive PPC have improved quality of life (QOL), symptom burden, advance care planning discussions, rates of hospice enrollment, home deaths, and receive less intensive therapy at the end-of-life (EOL). Parents report improved QOL and preparation for EOL. Though barriers to PPC utilization exist, new clinical models, oncology team education, and growing family awareness are leading to culture change. PPC within pediatric oncology is considered a standard of care. Families are accepting of PPC, as most wish for their children to live as well as possible for as long as possible. Although PPC remains underutilized, PPC should work collaboratively with pediatric oncology and HSCT teams to improve QOL and EOL outcomes of patients with cancer and their families.

Challenges of paediatric palliative care in Romania: a focus groups study

BackgroundThe availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania.MethodsFour mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding.ResultsFor many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation.ConclusionSignificant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.

Erratum to: “Barriers to the early integration of palliative care in pediatric oncology in 11 Eurasian countries”

Erratum to: “Barriers to the early integration of palliative care in pediatric oncology in 11 Eurasian countries”

Race, ethnicity, and goal‐concordance of end‐of‐life palliative care in pediatric oncology

Racial and ethnic minority children with cancer disproportionately receive intensive care at the end of life (EOL). It is not known whether these differences are goal-concordant or disparities. The authors sought to explore patterns of pediatric palliative care (PPC) and health care utilization in pediatric oncology patients receiving subspecialty palliative care at the end-of-life (last 6 months) and to examine goal-concordance of location of death in a subset of these patients. This was a retrospective cohort study of pediatric oncology patients receiving subspecialty palliative care at a single large tertiary care center who died between January 2013 and March 2017. A total of 115 patients including 71 White, non-Hispanic patients and 44 non-White patients (including 12 Black patients and 21 Hispanic patients) were included in the analytic cohort. There were no significant differences in oncologic diagnosis, cause of death, or health care utilization in the last 6 months of life. White and non-White patients had similar PPC utilization including time from initial consult to death and median number of PPC encounters. Non-White patients were significantly more likely to die in the hospital compared to White patients (68% vs 46%, P = .03). Analysis of a subcohort with documented preferences (n = 45) revealed that 91% of White patients and 93% of non-White patients died in their preferred location of death. Although non-White children with cancer were more likely to die in the hospital, this difference was goal-concordant in our cohort. Subspecialty PPC access may contribute to the achievement of goal-concordant EOL care.

Organizational and individual barriers and facilitators to the integration of pediatric palliative care for children: A grounded theory study

Background: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric oncology. A deeper understanding is needed of the influence of these barriers and the interactions between them, specifically in primary palliative care in hospital settings. Aim: To identify the organizational and healthcare provider barriers to the provision of primary pediatric palliative care. Design: This study utilized the grounded theory method. Semi-structured interviews were conducted and analyzed line by line, using NVivo software. Setting/participants: Forty-six pediatric oncologists, nurses, psychosocial team members, and other healthcare providers from six academic hospital centers participated in the research. Results: Organizational and healthcare provider factors were identified, each of which acted as both a barrier and facilitator to the provision of pediatric palliative care. Organizational barriers included lack of resources and management. Facilitators included external resources, resource management, and a palliative care center within the hospital. Individual barriers included attitudes toward palliative care among pediatric oncologists, pediatric oncologists’ personalities, and the emotional burden of providing palliative care. Facilitators include dedication and commitment, initiative, and sense of meaning. Provider facilitators for palliative care had a buffering effect on organizational barriers. Conclusion: Organizational and healthcare provider factors influence the quality and quantity of palliative care given to children and their families. This finding has implications on interventions structured to promote primary palliative care for children, especially in healthcare systems and situations where resources are limited.

An Interprofessional Team-Based Intervention to Address Barriers to Initiating Palliative Care in Pediatric Oncology: A Multiple-Method Evaluation of Feasibility, Acceptability, and Impact

ContextMany children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. ObjectivesTo assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals. MethodsA multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention. ResultsTwenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice. ConclusionAn adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.

Nursing care in palliative care in pediatric oncology

This research has as general theme "Nursing care in palliative care in pediatric oncology", an approach that needs to be further discussed due to the need to prepare nursing professionals working in the pediatric sector with cancer patients who are terminally. Thus, an informative text was produced with information based on authors who have already conducted research on this theme, with a qualitative approach, because this is a Bibliographic research. To guide this research, the general objective was to identify the knowledge and reactions of nursing professionals in pediatric cancer care and as specific objectives to identify the perceptions and feelings that permeate pediatric nursing practice in relation to cancer, treatment, and its implications and to know the care/care activities aimed at children hospitalized in the pediatric oncology sector. It is concluded that the courses directed to nursing need to offer disciplines that prepare these professionals to deal with pediatric patients who are in terminal state, preparing them to comfort the family in the face of the failure of the treatments that the patient underwent.

Pediatrik Onkolojide Palyatif Bakım Alan Çocuklara Psikolojik Destek Uygulamalarının Etkisi

Kanser, önemli bir halk sağlığı problemidir. Kanser türleri ve kanser nedeniyle tedavi gören birey sayısı her geçen gün artmaktadır. Sayısı artan kanser türlerinin büyük bir bölümünü çocukluk çağı kanserleri oluşturmaktadır. Çocuklarda görülen kanserlerin büyüme ve gelişme, psikososyal durum gibi birçok alanda olumsuz etkilerinin olduğu bilinmektedir. Çoğu zaman ölümle eşdeğer görülen bu durum çocuk ve ailesi üzerinde birtakım zorlayıcı etkiler meydana getirebilmektedir. Tedavi sürecinin uzun olması, tekrar oranlarının yüksekliği ve meydana gelen fiziksel ve ruhsal değişiklikler tedavi gören çocukların baş etmesi güç birtakım etkiler arasındadır. Kanser tedavisi süresince hastalara ve ailelerine mümkün olan en iyi yaşam kalitesini sağlamak amacıyla fiziksel ve psikolojik tüm semptomların erken teşhisi ve tedavisini amaçlayan palyatif bakım uygulamaları başarılı bir şekilde yıllardır uygulanmaktadır. Palyatif bakım alan çocuklarda fiziksel olumsuzlukların giderilmesine ek olarak ruhsal destek uygulamalarının da etkili olduğu bilinmektedir. Pediatrik onkolojide hastalık sürecine ve tedavi yöntemlerine hem aileyi hem de çocuğu adapte etmek, oluşabilecek komplikasyonlar hakkında bilgilendirmek hastalık süreçlerini yönetmeyi kolaylaştırabilmektedir. Bu derlemede pediatrik onkolojide palyatif bakım alan çocuklara psikolojik destek uygulamalarının etkilerinin literatür kapsamında incelenmesi amaçlanmış ve hemşirelik uygulamalarına yansımaları üzerinde durulmuştur.

Effectiveness of complementary therapies for the management of symptom clusters in palliative care in pediatric oncology: a systematic review.

To evaluate the effectiveness of complementary therapies in the management of symptom clusters in children and adolescents with cancer undergoing palliative care. Systematic review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, resorting to the databases MEDLINE, Web of Science, Central Cochrane, and PsycINFO. The identification, selection, inclusion, extraction, and methodological assessment were conducted by two independent reviewers. Five quasi-experiments met the eligibility criteria. The heterogeneous characteristics of the studies made meta-analysis impossible. Two studies used therapeutic massage, one used Reiki, one used boswellic acid, and one used Cannabis sativa; three of them (therapeutic massage and Reiki) presented statistically significant results for the management of the cluster pain-anxiety-worry-dyspnea. Most studies presented a moderate risk of bias as per ROBINS-I tool. Therapeutic massage and Reiki may be effective for the symptom clusters management, especially the pain-anxiety-worry-dyspnea cluster in children and adolescents undergoing palliative care.

Palliative care at the end of life in pediatric oncology: a nursing perspective

ABSTRACT Objectives: To identify the knowledge of nursing professionals about palliative care in pediatric oncology and their needs for end-of-life care. Method: A descriptive study with a qualitative approach, carried out in a federal hospital in Rio de Janeiro specialized in oncology. 29 nursing professionals from the pediatric inpatient sector participated in semi-structured interviews between July and August 2019. Data submitted to textual lexicographic analysis with Iramuteq. Results: Professionals are aware of the use of comprehensive care, centered on the family, aimed at comfort, and dignified death. They highlighted the need for psychological support for the nursing team, in addition to effective communication with a multidisciplinary team and carrying out actions for professional training in pediatric palliative care. Final considerations: A study showed care that is consistent with the precepts of palliative care and points out gaps in training, highlighting the need for professional training with a view to quality care.

The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review

ContextChildren with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown. ObjectiveWe conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains. MethodsWe searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization. ResultsWe screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication. ConclusionSPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.

Dissertações e teses sobre cuidados paliativos em oncologia pediátrica: estudo bibliométrico

Resumo Objetivo Analisar indicadores bibliometricos de estudos oriundos de dissertacoes e teses sobre cuidados paliativos em oncologia pediatrica defendidas em Programas de Pos-Graduacao no cenario brasileiro. Metodos Estudo bibliometrico realizado por meio do Banco de Teses e Dissertacoes da Coordenacao de Aperfeicoamento de Pessoal de Nivel Superior (CAPES) e da Biblioteca Digital Brasileira de Teses e Dissertacoes (BDTD), entre os anos de 2008 a 2018, defendidas em Programas de Pos-Graduacao do Brasil. Resultados Os indicadores bibliometricos investigados destacam 60 estudos (13 teses e 47 dissertacoes) realizados sobre cuidados paliativos em oncologia pediatrica. A Instituicao de Ensino Superior com a maior producao cientifica foi a Universidade de Sao Paulo, e a Regiao Sudeste foi a que mais se destacou com o maior quantitativo de publicacoes; estas foram distribuidas em 18 Programas. A area da Enfermagem ocupou posicao de destaque seguida da Psicologia e da Medicina. O desenho metodologico mais utilizado nos estudos foi de natureza qualitativa. A maioria das pesquisas foi realizada em hospitais especializados para o tratamento de câncer. Conclusao A pesquisa identificou um numero reduzido de estudos oriundos de dissertacoes e teses sobre cuidados paliativos em oncologia pediatrica, defendidas em Programas de Pos-Graduacao no cenario brasileiro. Sugerem-se novos estudos para ampliar a producao cientifica acerca do tema bem como para disseminar evidencias cientificas no contexto da pratica clinica dos cuidados paliativos em oncologia pediatrica.