Translating Research to Action: The Development of a Pediatric Palliative Cancer Care Advocacy Tool in Eurasia
advocacy; children with cancer; pediatric palliative care
PURPOSE: The Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional collaborators identified the need to disseminate country-specific study results locally and provide policy recommendations to inform stakeholders. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment report was developed with Eurasian and St Jude pediatric palliative care and oncology experts to summarize study findings and deliver country-level data to local stakeholders. In parallel, an assessment was developed to explore how regional collaborators intend to use the report to improve local advocacy and dissemination of research findings. The country report and assessment were translated to English, Russian, and Mongolian. RESULTS: Country-specific two-page reports display study findings on pediatric palliative care education, access to pediatric palliative care services, and barriers to and timing of integration with cancer care, alongside clinical and policy recommendations. These reports were distributed to collaborators in 11 countries. Assessment results (N = 30) demonstrated that regional collaborators planned to distribute the report to institutional and government stakeholders, aiming to increase access to pediatric palliative care services (77%), establish a community-based palliative care network (70%), and increase opportunities for specialization (70%). CONCLUSION: We describe the development of an evidence-based advocacy tool to inform local health and education policy in Eurasia. This summary report of study findings, translated to local languages and adapted to a broader audience, is currently used to advocate for greater access and quality of palliative care for children with cancer. This work may serve as the basis for future dissemination efforts of scientific research.
Ehrlich BS; Yakimkova T; Batmunkh T; Mishkova V; Movsisyan N; Kirgizov K; Borisevich M; Kizyma R; Graetz DE; McNeil MJ; Vinitsky A; Smelov V; Corbex M; Lam CG; Kaye EC; Baker JN; Agulnik A
JCO Global Oncology
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1200/go.21.00270" target="_blank" rel="noreferrer noopener">10.1200/go.21.00270</a>
Pediatric Oncology Palliative Care Programs in Central America: Pathways to Success
palliative care; pain; pediatric oncology
Palliative care offers children who have life-limiting and life-threatening oncologic illnesses and their families improved quality of life. In some instances, impeccable symptom control can lead to improved survival. Cultural and financial barriers to palliative care in oncology patients occur in all countries, and those located in Central America are no exception. In this article, we summarize how the programs participating in the Asociación de Hemato-Oncólogos Pediatras de Centro America (AHOPCA) have developed dedicated oncology palliative care programs. The experience in Guatemala, El Salvador, Costa Rica, Panama, Dominican Republic and Haiti is detailed, with a focus on history, the barriers that have impeded progress, and achievements. Future directions, which, of course, may be impacted by the COVID-19 pandemic, are described as well.
Gómez García WC; Rivas S; Paz G; Bustamante M; Castro G; Gutiérrez H; Ah Chu MS; Gassant PY; Larin Lovo R; Gamboa Y; Torres Núñez M; Garcia Quintero X; Okhuysen-Cawley R
Children
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children8111031" target="_blank" rel="noreferrer noopener">10.3390/children8111031</a>
Barriers to and Facilitators of Neonatal Palliative Care Among Neonatal Professionals in China
child; human; palliative therapy; cross-sectional study; terminal care; neonatal intensive care unit; newborn; health personnel attitude; palliative nursing
Objectives: This study investigated institutional and personal barriers to and facilitators of neonatal palliative care facing neonatal professionals in China. Methods: A cross-sectional questionnaire surveyed 231 neonatal clinicians employed in 5 neonatal intensive care units from 2 children’s hospitals and 3 medical centers in China. Measurements: The translated modified version of the Neonatal Palliative Care Attitude Scale was used to survey neonatal clinicians’ attitudes and beliefs regarding neonatal palliative care. Results: Findings highlight 4 facilitators and 5 barriers among participating clinicians. Participants gave contradictory responses regarding the relative importance of curative treatment versus palliative care in the NICU. Negatively traumatic feelings, cultural issues and moral distress may impact this contradictory response and discourage clinicians from providing neonatal palliative care. Additionally, neonatologists and nurses held differing attitudes on several topics (p < 0.05). Conclusion: Further research should address strategies to improve knowledge and attitudes and relieve moral distress in NICU clinicians. Neonatal clinicians providing neonatal palliative care should receive regular palliative care training addressing culture- specific issues and communication skills. Practice Implications: Study findings will be beneficial to inform clinical education and practice. Regular interdisciplinary team training is needed to enhance support for palliative care and decrease clinicians’ moral distress during end-of-life care.
Gu L; Li ZZ; Peng NH; Zhou JF; Wei BR; Chang YC
American Journal of Hospice and Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091211046236" target="_blank" rel="noreferrer noopener">10.1177/10499091211046236</a>
Overview of Perinatal Palliative Care in Brazil
quality of life; palliative care; Brazil; mothers; epidemiology; pregnancy; Chordata; eukaryotes; health care; Hominidae; Homo; human diseases; Latin America; mammals; man; primates; South America; vertebrates; birth; America; animals; neonates; epidemics; gestation; women; guidelines; recommendations; birth defects; Community of Portuguese Language Countries; congenital abnormalities; congenital malformations; drug abusers; drug users; high Human Development Index countries; malformations; microcephaly; upper-middle income countries
Significant attention to palliative care in terminally ill patients has only been effective in Brazil since the year 2000, although there have been isolated actions since the 1980s. When the case involves fetuses or neonates unable to cure, communication and care with the family members only received attention and effective organization starting in 2017. Notably in the years 2015 and 2016 there was an epidemic of microcephaly and along with the persistent crisis of drug users has raised the indices of malformations to a level higher than 3% of the world average. Here we aim the evaluation of: (a) social, educational and spiritual profile of the mothers; (b) structure of the specific teams related to palliative care in neonatology; (c) recommendations and protocols currently used in the country. The method used is an electronic retrospective on databases and government data; evaluation of the location and composition of palliative care teams in the country. The data found clearly point out that for Brazilian women, the characteristics of regionality in the country, educational level, religiousness and quality of life directly influence pregnancy and the acceptance or not of the possibility of death, directly influencing perinatal palliative care, which, by the way, is still developing methodologies for this type of action.
Saffi Junior MC; de Moraes AMSM; Favero GM
Brazilian Archives of Biology and Technology
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1590/1678-4324-2022210615" target="_blank" rel="noreferrer noopener">10.1590/1678-4324-2022210615</a>
Pediatric Palliative Care: Competency and Educational Needs Assessment in Pediatricians of a Developing Country
competency; educational need; end-of-life care; pediatric palliative care
Pediatric Palliative Care (PPC) is a nascent subspecialty that aims on achieving the best possible quality of life for children with life-threatening illnesses. To attain this goal in a developing country, Pediatricians require adequate knowledge and skill in this subject. Assessment of competency and educational needs in Pediatricians is the first step towards this aim. A multi-center, self-reported, cross-sectional, online survey was conducted among Pediatric residents and junior staff pediatricians from various teaching hospitals in Pakistan. Data were analyzed in terms of descriptive statistics using SPSS 16. Total 284 Pediatric residents and junior staff pediatricians from 4 different training programs and 13 different teaching hospitals of Punjab, Pakistan recorded their responses. The mean age of respondents was 30.19 years (+2.67 SD) with a male-to-female ratio of 1:1.2. Regarding self-assessment of competency in end-of-life clinical skills, low or below average competence (Mean < 2.55) was reported in assessment and management of terminal delirium, agitation, and anxiety; use of adjuvant analgesics, discussing treatment withdrawal, use of parenteral opioid analgesics, and developing family-centered goals of care. Improved competence was observed with the increasing years of training/experience. Regarding interest(s) in learning about end-of-life clinical topics, all of the 10 topics included in the survey reached a significant level of interest (Mean > 2.5) while the top 3 recommended topics were: Pain assessment and management, assessment and management of terminal delirium, agitation, anxiety, and assessment and management of terminal dyspnea. Pediatricians in a developing country are eager to learn more about PPC but significant gaps exist in current training in PPC in our country that need to be bridged. Copyright © 2021 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
Ul-Ain R; Faizan M; Mohamed A
Pediatric Hematology Oncology Journal
2021
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<a href="http://doi.org/10.1016/j.phoj.2021.08.002" target="_blank" rel="noreferrer noopener">10.1016/j.phoj.2021.08.002</a>
Face and Content Validity, Acceptability, Feasibility, and Implementability of a Novel Outcome Measure for Children with Life-Limiting or Life-Threatening Illness in Three Sub-Saharan African Countries
Hospice and Palliative Care Nursing; Palliative Care; Adolescent; Child; Feasibility Studies; Humans; Outcome Assessment Health Care; Palliative Care/px [Psychology]; Surveys and Questionnaires; Uganda
BACKGROUND: The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. AIM: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. DESIGN: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. RESULTS: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. CONCLUSION: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.
Namisango E; Bristowe K; Murtagh FE; Downing J; Powell RA; Atieno M; Abas M; Ali Z; Luyirika EB; Meiring M; Mwangi-Powell FN; Higginson IJ; Harding R
Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163221099583" target="_blank" rel="noreferrer noopener">10.1177/02692163221099583</a>
Neonatal Palliative Care Practices: An Indian Perspective
article; female; human; human experiment; India; male; memory; middle income country; neonatal intensive care unit; neonatal nurse; neonatologist; newborn; palliative therapy; photography; practice guideline; questionnaire; terminal care
Background: Neonatal palliative care (NPC) aims to prevent and relieve the suffering of neonates who are not going to recover. Although an integral part of neonatal care, it remains in nascent stages in many parts of the world. Aim(s): To describe neonatologists' level of knowledge and understanding of NPC, and to describe current practices and barriers to its delivery. Method(s): The study, a cross-sectional web-based national survey, was undertaken between 2019 and 2020. A structured form of 22 questions about NPC was completed by neonatologists across level III neonatal intensive care units in India. Result(s): Of the 145 questionnaires sent out, 65 responses were returned (44.8%). The participating units were in both public (38.5%) and private/corporate hospitals (61.5%). The concept of NPC was known to 90.8%, and 93.8% could identify conditions necessitating palliation. However, 81.5% of units lacked a palliative team, and few had teams of only neonatologists and neonatal nurses. Only 10.8% of the units had a structured policy, but none addressed all aspects of neonatal palliation. The creation of memories by parents spending time with their neonate (38.9%), photography (75.9%), footprints (13%) or collecting memorabilia was allowed at many centres. Frequently encountered barriers included inadequate knowledge (16.9%), poor infrastructure (21.5%), inadequate human resources (24.6%) and a lack of structured guidelines and legal support (15.4%). Conclusion(s): This is the first study to highlight a large gap in neonatal end-of-life care in India and it reflects an urgent need to facilitate its incorporation into routine care. Abbreviations: NICU: neonatal intensive care unit; NPC: neonatal palliative care. Copyright © 2022 Informa UK Limited, trading as Taylor & Francis Group.
Mascarenhas D; Goyal M; Nanavati R
Paediatrics and International Child Health
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/20469047.2022.2089821" target="_blank" rel="noreferrer noopener">10.1080/20469047.2022.2089821</a>
Perception of Pediatric Oncology Family Care Providers toward Palliative Care and Its Perceived Barriers in Egypt
Attitude; Barriers; Knowledge; Oncology; Palliative care; Practice
BACKGROUND: Palliative care is comprehensive supportive care addressing the suffering, pain, discomfort, symptoms, and stress of cancer and any serious life-threatening disease. It is a key part of care for our children living with cancer and is an important source of support for their families. The study aimed to assess the perception of pediatric oncology family care providers toward palliative care and its perceived barriers in Egypt. METHOD(S): Total number of 500 oncology children's family care providers was recruited. A descriptive research design was utilized. Researchers used three tools as Structured Interview Questionnaire to assess the participants' knowledge and perceived barriers, Attitude toward palliative care Likert Scale, and Reported Practices Observational Checklist. The study was conducted in outpatient cancer clinics affiliated with El-Nasr governmental hospital located at Port Said governorate. RESULT(S): 51.8% of the total oncology children's family care providers had sufficient knowledge, 78.6% had a positive attitude, while,76.8% of them had inappropriate Practice towards palliative care. SIGNIFICANCE OF RESULTS: The pediatric oncology family care providers had sufficient knowledge and a positive attitude toward palliative care, but their practices were inappropriate. Also, the majority of participants identified Lack of family care providers training in pediatric palliative care and improper communication between the health team and family care providers as the main barriers to providing palliative care to children. Providing a palliative care training program for family caregivers through continuing professional development is highly recommended besides further research studies using large probability samples at different settings.
Mohamed MA; Ibrahim AM; Ibrahim HM; Abdella N; Elmowafy RI
Palliative and Supportive Care
2022
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<a href="http://doi.org/10.1017/S1478951521001668" target="_blank" rel="noreferrer noopener">10.1017/S1478951521001668</a>
Physician Perceptions of Palliative Care for Children With Cancer in Latin America
children with cancer; Pediatric palliative care; physician perceptions
Importance: The World Health Organization (WHO) designates early integration of palliative care as an ethical responsibility in the treatment of children with serious illness. Although structural barriers may influence provision of pediatric palliative care (PPC) for children with cancer in resource-limited settings, underlying physician perceptions may also impede early integration of PPC in cancer care. Objective: To investigate perceptions among physicians in Latin America about the integration of palliative care for children with cancer. Design, Setting, and Participants: This survey study used the Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey, which was developed for physicians who care for children with cancer and was initially distributed in Eurasia. The survey was modified for use in Latin America, including translation into Spanish and adaptation for cultural context. The survey was distributed between August 21, 2020, and January 31, 2021, to physicians treating children with cancer in 17 Latin American countries. Each country had a specific survey distribution method based on guidance of local experts. Main Outcomes and Measures: The ADAPT survey evaluated physicians' understanding of palliative care principles, comfort in addressing patient and family suffering, and identification of barriers to PPC integration for children with cancer. Univariate and multivariable linear regression analyses were used to assess factors associated with physicians' knowledge about and comfort with PPC practice and whether independent physician variables were associated with survey response alignment with WHO guidance on PPC. Open-ended questions were analyzed qualitatively to supplement the quantitative data. Results: A total of 874 physicians from 17 countries participated, with an overall response rate of 39.9% (874 of 2193) and a median country response rate of 51.4% (range, 23.7%-100%). Most respondents were aged 35 years or older (577 [66.0%]), and 594 (68.0%) identified as female. Most physicians (486 [55.6%]) had no formal PPC training, and 303 (34.7%) had no access to PPC experts for consultation. Physician perspectives on PPC were generally aligned with WHO guidance (mean [SD] alignment, 83.0% [14.1%]; range among respondents, 24.0%-100%). However, only 438 respondents (50.1%) felt comfortable addressing physical symptoms of patients receiving PPC, 295 (33.8%) felt comfortable addressing emotional symptoms, and 216 (24.7%) felt comfortable addressing grief and bereavement needs of the patient's family. A total of 829 participants (94.8%) desired further education and training in PPC. Conclusion and Relevance: Although physicians' perspectives aligned well with WHO guidance for PPC, this survey study identified opportunities for improving physician training in symptom management and emotional support for children with cancer and their families. These findings may inform the development of targeted interventions to improve the quality of PPC for children with cancer in Latin America.
McNeil MJ; Ehrlich BS; Wang H; Vedaraju Y; Bustamante M; Dussel V; Friedrich P; Garcia Quintero X; Gillipelli SR; Gomez Garcia W; Graetz DE; Kaye EC; Metzger ML; Sabato Danon CV; Devidas M; Baker JN; Agulnik A; Assessing Doctors' Attitudes on Palliative Treatment Latin America Study Group
JAMA Network Open
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2022.1245" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.1245</a>
Implementation Science of Paediatric Palliative Care in Lower-Middle-Income Countries in Southeast Asia: An Integrative Review
Adoption; Health science; Innovation; Knowledge translation; Patient care
There is an ongoing development in the paediatric palliative care (PPC) program in Southeast Asia (SEA). However, the implementation process has not been clearly understood among lower-middle-income countries (LMICs) in this region. The purpose of this paper is to review and synthesise research about the implementation process of 7 identified LMICs in the SEA: Cambodia, Indonesia, Myanmar, Lao PDR, the Philippines, Timor-Leste, and Vietnam. An integrative review utilising Whittemore and Knafi's five-stage process was employed. Electronic searches of CINAHL, Web of Science, ProQuest, and Google Scholar (no year restriction) were conducted. From the 7599 articles retrieved, only 11 met the eligibility criteria. Each article was appraised for methodological quality (QualSyst tool and AACODS checklist) and constant comparison methods were used. Two overarching themes emerged in this review - the gaps in PPC standards, practice framework, and guidelines and the PPC challenges and implementation strategies. Understanding the implementation science of PPC among LMICs in the SEA region addresses the gap between idealism and realism. It provides reliable information in the development of strategic work plans that will improve the implementation process and promote the translation of EBIs into practice significant to the quality of paediatric patient outcomes.
Maniago JD; Ngaya-An FV
Indian Journal of Palliative Care
2022
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<a href="http://doi.org/10.25259/ijpc_410_20" target="_blank" rel="noreferrer noopener">10.25259/ijpc_410_20</a>
Experiences of Family Caregivers of Children with Cancer While Receiving Home-Based Pediatric Palliative Care in Indonesia: A Qualitative Study
children with cancer; family caregivers; home-based pediatric palliative care
BACKGROUND: Caring for children living with life-threatening and life-limiting illnesses can be challenging. Parents' roles as the main caregivers can be complex with extensive responsibilities. The experiences of family caregivers can provide key insights into the provision of home-based Pediatric Palliative Care (PPC) for seriously ill children. This study is aimed at exploring the experiences of family caregivers of children diagnosed with cancer while receiving home-based PPC. METHODS: This was a qualitative study. This study used semi-structured interviews which were audio-recorded with family caregivers of twelve children diagnosed with cancer who had received home-based PPC. The interviews were transcribed verbatim. The data were analyzed using qualitative content analysis. The reporting of the study was based on the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. RESULTS: Three main themes emerged: (1) The implementation of home-based PPC; (2) The benefits of home-based PPC; and (3) The family caregivers' hopes of the home-based PPC service and their impressions of home-based PPC. The implementation of home-based PPC described the experiences of family caregivers in receiving home-based PPC provided by nurses with particular attention to the bio-psychosocial-spiritual aspects. Family caregivers experienced several benefits from the home-based PCC service, where holistic care was provided for both the patient and the family. Family caregivers shared their hopes prior to receiving support from competent health care professionals to care for their sick child at home and improve the child's quality of life. They confirmed that these hopes were fulfilled through the home-based PPC service delivered by Rachel House. CONCLUSIONS: Home-based PPC provides several benefits with a positive impact for both the children diagnosed with cancer as well as their families. Nurses involved in the home-based PPC service provide holistic care with a family-centered approach. We believe that children with terminal illnesses and their families need and deserve home-based PPC during difficult times.
Effendy C; Uligraff DK; Sari SH; Angraini F; Chandra L
BMC Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-022-00986-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00986-5</a>
Delphi Method to Develop a Palliative Care Tool for Children and Families in Sub-Saharan Africa
Pediatric Palliative Care; Childhood Cancer Clinical Providers; Delphi Method; low and middle income country; Pediatric Palliative Care Assessment
CONTEXT: In sub-Saharan Africa there is no standardized approach to pediatric palliative care assessment. Because of this, there is a critical demand for evidence-based assessment tools that identify specialized needs of children and their families requiring palliative care in developing countries. OBJECTIVES: To develop a standardized approach to pediatric palliative care (PPC) assessment that includes an individualized plan of care for use in sub-Saharan Africa. METHODS: A Delphi method approach used five rounds to explore core elements that define the essential assessment attributes mandatory for providing excellence in PPC. Using the Delphi method, consensus from 11 PPC experts was obtained during four Delphi rounds regarding the most important questions to include in a PPC assessment tool and plan of care. During the final Delphi round 5, expert consensus was confirmed in a separate group of 36 childhood cancer/palliative care clinical providers. RESULTS: Five core elements were developed as the foundation for a PPC assessment. A symptom assessment tool was developed that includes 15 symptoms that PPC experts agreed occurred more than 65% of the time in their patients. CONCLUSION: The Delphi method was an effective tool to develop a consensus on a PPC assessment tool to use with children and their families in sub-Saharan Africa. This standardized approach will enable collection of data to drive outcomes and research. Key Message. The need for a culturally appropriate PPC assessment tool is crucial to promoting excellence in palliative care around the globe. This tool will have a tremendous impact on the care of children and their families in sub-Saharan Africa.
Chinyundo K; Casas J; Bank R; Abenawe C; Gaolebale B; Nakirulu A; Maifale-Mburu G; Hesselgrave J; Butia M; Bakulumpagi D; Nassanga I; Higgins J; Hockenberry M
Journal of Pain and Symptom Management
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.021</a>
Using EmPalPed—An Educational Toolkit on Essential Messages in Palliative Care and Pain Management in Children—As a Strategy to Promote Pediatric Palliative Care
education; healthcare professional; low-income countries; middle-income countries; pain assessment; pediatric palliative care; physicians
Background: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational curricula of healthcare programs. Therefore, specific training that improves knowledge of HCPs and access to PC for children and their families is needed. To address this gap, we organized and conducted the Essential Messages in Palliative Care and Pain Management in Children (EmPalPed), an educational toolkit to increase awareness and promote essential knowledge in PPC for low- and middle-income countries. Methodology: The EmPalPed toolkit consisted of a 5-h virtual workshop with small working groups of HCPs caring for children with life-threatening conditions such as cancer. The toolkit was organized along five key domains: (1) PC as it relates to the concept of quality of life (QoL), (2) effective communication, (3) addressing pain management as a top priority, (4) providing end-of-life care, and (5) access to high-quality PC as a fundamental human right. The workshop activities included different educational strategies and tools (e.g., a pocket guide for pain assessment and management, a PPC booklet, a quick guide for communicating bad news, role playing, and discussions of clinical cases). Results: A total of 145 HCPs from 22 centers were trained. The post-test analysis for HCPs showed that attitude and knowledge about communication (p < 0.001), pain assessment (p < 0.001), first-line opioid of choice in children (p < 0.001), and palliative sedation (p < 0.001) had positive and statistically significant changes from the pre-test analysis. Discussion: This study supported the notion that the EmPalPed educational toolkit is an effective mechanism for raising awareness regarding PPC as well as providing training in many of the key aspects of PPC. The EmPalPed training approach should be studied beyond this setting, and the impact should be measured longitudinally.
García-Quintero X; Claros-Hulbert A; Tello-Cajiao ME; Bolaños-Lopez JE; Cuervo-Suárez MI; Durán MGG; Gomez Garcia W; McNeil M; Baker JN
Children
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children9060838" target="_blank" rel="noreferrer noopener">10.3390/children9060838</a>
The Do-Not-Resuscitate-Like (DNRL) Order, a Medical Directive for Limiting Life-Sustaining Treatment in the End-Of-Life Care of Children with Cancer: Experience of Major Cancer Center in Brazil
do-not-resuscitate order; palliative care medicine; pediatric
PURPOSE: In the last few decades, interest in palliative care and advance care planning has grown in Brazil and worldwide. Empirical studies are needed to reduce therapeutic obstinacy and medical futility in the end-of-life care of children with incurable cancer. The aim of this study was to investigate the effects of do-not-resuscitate-like (DNRL) orders on the quality of end-of-life care of children with incurable solid tumors at a cancer center in Brazil. METHODS: A retrospective observational cohort study of 181 pediatric patients with solid tumors followed at the Pediatric Oncology Department of the Brazilian National Cancer Institute, Rio de Janeiro, Brazil, who died due to disease progression from 2009 to 2013. Medical records were reviewed for indicators of quality of end-of-life care, including overtreatment, care planning, and care at death, in addition to documentation of the diagnosis of life-limiting illness and the presence of a DNRL order. Data were summarized using descriptive statistics. Univariate and multivariate logistic regression analyses were used to examine associations between demographics, disease, treatment, and indicators of end-of-life care with a DNRL order. RESULTS: A documented DNRL order was associated with lower odds of dying in the intensive care unit or emergency room (80%), dying within 30 days of endotracheal tube placement (80%), or cardiopulmonary resuscitation (CPR) administration at the time of death (96%). CONCLUSION: Placement of DNRL orders early in the disease process is critical in reducing futile treatment in pediatric patients with incurable cancer.
de Wylson Fernandes Gomes de Mattos D; Thuler LC; da Silva Lima FF; de Camargo B; Ferman S
Support Care Cancer
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00520-021-06717-5" target="_blank" rel="noreferrer noopener">10.1007/s00520-021-06717-5</a>
Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial
Adolescent; Humans; Child; palliative; Palliative Care; Neoplasms/therapy; cancer; Child Preschool; Pediatric; Quality of Life; Quality of Life; Pain; Anorexia; home visits
OBJECTIVE: Over the past few years, an integrated approach of palliative care (PC) to chronic and/or life-threatening conditions care has been widely used. Home-based PC (HBPC) service is developed to meet the needs of patients at home; however, it has not been used widely. This study is aimed at determining the benefits of integrated HBPC for the quality of life (QoL) and symptoms intensity in Indonesian children with malignancies. METHOD: A randomized controlled trial was carried out to compare the quality of life between patients who were given PC (a three-month home visit) and those who did not receive PC (control group). Each group was constituted of thirty children with cancer and aged 2-18 years old and were consulted by a palliative team. The participants were randomly allocated to two groups. In the first and twelfth weeks of the intervention, all patients were assessed using the Pediatric Quality of Life Inventory (PedsQLTM) questionnaire cancer module 3.0 (report by proxy or self-report). Symptoms intensity (pain, anorexia, sleep disturbance) were scored by using Edmonton Symptoms Assessment Scale (ESAS). The mean score and each dimension score of both groups were compared and analyzed using bivariate analysis. RESULTS: In total, fifty participants were included in the study. A significant difference was found between the two groups in terms of the mean total score in control group 62.39 and intervention group 81.63 (p<0.001). The QoL was improved in the intervention group, while it was declined in the control group as the disease progressed. The main improvements were in the pain and nausea aspects (p<0.001), followed by procedural anxiety (p=0.002), treatment anxiety (p=0.002), and worry (p=0.014). Palliative intervention significantly reduced sleep disturbances (p=0.003) and anorexia (p<0.001). CONCLUSION: Home-based PC improved several aspects of QoL and caused better symptom management in children with malignancies. An early intervention concurrent with the underlying treatment can improve QoL in these children.
Andriastuti M; Halim PG; Tunjungsari E; Widodo DP
Asian Pacific Journal of Cancer Prevention
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.31557/apjcp.2022.23.9.3029" target="_blank" rel="noreferrer noopener">10.31557/apjcp.2022.23.9.3029</a>
Neonatal Nurses' Perceptions and Needs of End-of-Life Care Practice: A Jordanian Qualitative Study
end-of-life care; neonate; NICU nurses; perception
End-of-life (EOL) care for newborns is challenging and requires well-prepared nurses to provide the best care for the dying baby and to prepare and support parents during such a difficult experience. This study aimed to explore Jordanian neonatal intensive care unit nurses' perceptions and needs regarding the provision of EOL care. This study used an exploratory descriptive qualitative approach and was conducted among a sample of 12 Jordanian neonatal intensive care unit nurses. Semistructured interviews were conducted to allow the nurses to describe their personal experiences and express their needs related to the provision of EOL care. Two main themes and 6 subthemes emerged from the analysis process. Main themes were (1) the challenges related to the provision of EOL care, and (2) nurses' needs: what matters most. The findings of this study shed light on neonatal care unit nurses' experiences and needs related to the provision of EOL care. The results of this study may be used to develop EOL care guidelines, programs, and protocols to be applied in intensive care units.
Shattnawi KK; Younis BJ; Omran SM
Journal of Hospice & Palliative Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000903" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000903</a>
Evaluation of Care Providers' Attitude toward Perinatal Palliative Care and its Challenges in the Selected Teaching Hospitals of Tehran in 2019
Palliative care; Hospice care; Nurse; Attitude; Perinatal care
OBJECTIVES: The present study aims to determine the attitudes of care providers including obstetricians, paediatricians and midwives working in perinatal, obstetric and neonatal intensive care unit (NICU) wards of the selected teaching hospitals in Tehran in 2019. In addition, the challenges of providing palliative care from the perspective of these individuals have been examined. MATERIALS AND METHODS: In this descriptive study, the research population was selected through convenience sampling based on the inclusion criteria. To assess care providers' attitude toward the perinatal palliative care and the challenges of its implementation, in addition to the questionnaire of demographic characteristics, a researcher-made questionnaire was also used. RESULTS: Most of the care providers (90.5%) believed that parents should be involved in decision-making to select the treatment type. Most of the care providers (90%) believed that the lack of prepared infrastructures is one of the major challenges in providing these types of care. CONCLUSION: Care providers have almost positive attitudes toward the various dimensions of providing perinatal palliative care, but it has not been properly implemented yet due to the insufficient knowledge of this type of care, the lack of required infrastructures (appropriate conditions in NICUs to provide this type of care, the sufficient number of staff and experts in this field), as well as the health authorities' neglecting this type of care.
Mohammadi A; Tahmasebi M; Mojen LK; Rassouli M; Ashrafizadeh H
Indian Journal of Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.25259/ijpc_90_21" target="_blank" rel="noreferrer noopener">10.25259/ijpc_90_21</a>
Challenges in the Provision of Pediatric Palliative Care in Mexico: A Cross-Sectional Web-Based Survey
health services accessibility; low- and middle-income countries; pediatric palliative care
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(s): 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. Result(s): 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(s): 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.
Gruneberg ES; Ramos-Guerrero J; Pastrana T
Journal of Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/08258597211062767" target="_blank" rel="noreferrer noopener">10.1177/08258597211062767</a>
Using Normalization Process Theory to Evaluate Providing Pediatric Palliative Care at End-Of-Life as Web-Based Training Intervention for Nurses: Study Protocol for a Randomized Controlled Trial
End-of-Life Nursing Education Consortium for pediatric palliative care; Iraq; life-limiting illness; pediatric palliative care; pragmatic trial; web-based training
Background: Palliative care is a rather concept that new in Iraq, there is no training intended for both health care specialists and the overall public. The lack of education and training programs is the most important barrier. Intermediate training is needed for individuals regularly at work with patients with life-threatening diseases. The End-of-Life Nursing Education Consortium-Pediatric Palliative Care meant for nurses with an interest in providing care for those children with a life-limiting disease or in the event of accidents and unexpected passing. Objective(s): The present paper is intended to evaluate the effect of a web-based course using the Normalization Process Theory, which focuses attention on how complex interventions become routinely embedded in practice and training of the sample academic nurses' staff in the application of the pediatric palliative care in routine daily practice. It hypothesizes that nurses' specialists will help after passing the training in providing palliative care for the pediatric population. Method(s): In a Multicenter, parallel, Pragmatic trial, five health care settings spread over a single city of Babylon Province. Participants will be recruited and stratified to two strata (critical care units and noncritical care units). In the experimental condition, the (n = 86 academic nursing staff) will be trained in the application of the pediatric palliative care, for two weeks as web-based training course powered by Relais platform through inviting the nurses to participate via email, or instant messaging instruct WhatsApp, telegram, Viber account of participants to provide End of life care in addition to usual care to children and adolescents with life-limiting conditions. In the control condition (n=86), continue usual care. The program's effectiveness will be assessed at the level of nurses only. The statistical analyses will compare the baseline assessment for each participant (before the intervention) with a post-intervention assessment (after passing the training course). Moreover, a continuation assessment will occur three months after the course end. As around numerous unidentified factors influencing the effect of the course training, a progress evaluation to evaluate selection sample, application, and intervention value besides difficulties and organizers to implementation will as well be present comprised in the study analysis. The staff of nursing might not be the intervention blinded, nonetheless were blinded for the results. Result(s): The study trial recruitment opened in July 2020. The first outcomes are predicted to be available in December 2020. Discussion(s): Study object to determine the training effect of the academic nurse staff of multicenter departments\ units with a training course in the application of new pediatric palliative care. The study strengths are the usual practice setting, the staff training, the readiness of staff to participate in the study, and the random allocation to the intervention. Possible drawbacks may drop out because of staff of nursing may well transfer to another department throughout the study period. Trial Registration: https://clinicaltrials.gov/ct2/show/NCT04461561. Copyright © 2021 EManuscript Technologies. All rights reserved.
Al-Shammari MA; Yasir AA; Aldoori NM; Mohammad HJ
Journal of Cardiovascular Disease Research
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.2196/23783" target="_blank" rel="noreferrer noopener">10.2196/23783</a>
Palliative Care Services within a Pediatric Hematology-Oncology Program in a Low-Resource Setting
global health; hematology; oncology; Pediatrics; sub-Saharan Africa
CONTEXT: Outcomes for children with cancer in sub-Saharan Africa (SAA) are dismal due to delayed diagnosis and limited access to curative therapy. When establishing a pediatric hematology-oncology (PHO) program in low-resource settings, early integration of palliative care services becomes essential. While palliative care is a human right, equitable distribution is lacking. OBJECTIVES: We aim to describe our experience establishing a palliative care program, the services offered, and the distribution of patients served. METHODS: This is a brief description of our PHO palliative care program in Lilongwe, Malawi at a tertiary care center and a three-year retrospective review of activities (2017-2020). Services offered include inpatient, outpatient, home visits, end of life care, and strengthening of referral systems. RESULTS: Over the 3-year period, 315 patients were enrolled. Fifty-seven percent (n=179) were male. The median age was 7 years (5 months - 22 years). Patients served were from 17 of 28 districts within Malawi. Diagnoses of patients included 43% solid tumors (n=135), 22% lymphoma (n=68), 15% leukemia (n=47) and 21% hematologic disease (n=65). Forty percent of patients have died (n=125), with 53% of deaths occurring at home (n=66), 22% in the hospital (n=28), and 25% at unknown locations (n=31). CONCLUSION: Palliative care is a critical component of PHO programs worldwide. Programs must leverage existing networks to ensure optimal care to children and families. We demonstrate the feasibility of integrating palliative care services within a PHO program in a low-resource setting, which could serve as a model for other countries in SSA.
Silverstein A; Butia M; Bank R; Manda G; Nyasulu C; Mwango N; Makuti S; Chikasema M; Torrey S; Hesselgrave J; Casas J; Thambo L; Msekandiana A; Chiume M; Ozuah N; Huibers MH
Journal of Pain and Symptom Management
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2022.01.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.01.006</a>