Regional adaptation of the education in palliative and end-of-life Care Pediatrics (EPEC-Pediatrics) curriculum in Eurasia
Humans; Child; pediatric palliative care; Terminal Care; education; Palliative Care/methods; Curriculum; Covid-19; Terminal Care; pediatric oncology; Eurasia; Enteropathogenic Escherichia coli
BACKGROUND: Pediatric palliative care (PPC) is a priority to improve pediatric hematology oncology (PHO) care in Eurasia. However, there are limited regional opportunities for PPC education. We describe the adaptation and implementation of a bilingual end-user Education in Palliative and End-of-Life Care (EPEC)-Pediatrics course for PHO clinicians in Eurasia. METHODS: Due to COVID-19, this course was delivered virtually, consisting of prerecorded, asynchronous lectures, and a bilingual workshop with interactive lectures and small group sessions. A pre-postcourse design was used to evaluate the knowledge acquisition of the participants including their knowledge alignment with World Health Organization (WHO) guidance, ideal timing of palliative care, and comfort in providing palliative care to their patients. Questions were mostly quantitative with multiple choice or Likert scale options, supplemented by free-text responses. RESULTS: A total of 44 (76%) participants from 14 countries completed all components of the course including pre- and postcourse assessments. Participant alignment with WHO guidance improved from 75% in the pre- to 90% in the postcourse assessments (p < 0.001). After participation, 93% felt more confident controlling the suffering of children at the end of life, 91% felt more confident in prescribing opioids and managing pain, and 98% better understood how to hold difficult conversations with patients and families. Most participants (98%) stated that they will change their clinical practice based on the skills and knowledge gained in this course. CONCLUSIONS: We present a successful regional adaptation of the EPEC-Pediatrics curriculum, including novel delivery of course content via a virtual bilingual format. This course resulted in significant improvement in participant attitudes and knowledge of PPC along with an understanding of the ideal timing of palliative care consultation and comfort in providing PPC to children with cancer. We plan to incorporate participant feedback to improve the course and repeat it annually to improve access to high-quality palliative care education for PHO clinicians in Eurasia.
McNeil MJ; Ehrlich B; Yakimkova T; Wang H; Mishkova V; Bezler Z; Kumirova E; Madni A; Movsisyan N; Williams K; Baizakova B; Borisevich M; Chatman G; Erimbetova I; Quintero XG; Golban R; Kirby B; Nunez P; Ranadive R; Sakhar N; Sonnenfelt J; Volkova A; Moreira D; Friedrichsdorf SJ; Wolfe J; Remke S; Hauser J; Devidas M; Baker JN; Agulnik A
Cancer Medicine
2023
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/10.1002/cam4.5213" target="_blank" rel="noreferrer noopener">10.1002/cam4.5213</a>
Early Versus Late Outpatient Pediatric Palliative Care Consultation and Its Association With End-of-Life Outcomes in Children with Cancer
Palliative Care; pediatric palliative care; Referral and Consultation; advance care planning; end of life; childhood cancer; supportive care; pediatric oncology
Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (<12 weeks) or late (≥12 weeks from diagnosis) outpatient PPC consultation with demographics, advance care planning (ACP), and end-of-life (EOL) outcomes. Design: Retrospective chart and database review of demographic, disease, visit data, and PPC/EOL outcomes. Setting/Subjects: Deceased pediatric patients with cancer 0-27 years of age seen at an embedded consultative PPC clinic. Measurements: Patient demographics, disease characteristics, PPC/EOL outcomes: timing/receipt of ACP, hospice enrollment, do-not-resuscitate (DNR) documentation, hospital days in last 90 days of life, concordance between actual and preferred location of death, receipt of cardiopulmonary resuscitation (CPR) at EOL, and death in the intensive care unit. Results: Thirty-two patients received early and 118 received late PPC. Early outpatient PPC was associated with cancer type (p < 0.01). Early PPC (p = 0.04) and ACP documentation (p = 0.04) were associated with documentation of preferred location of death. Early PPC was associated with a preference for home death (p = 0.02). Timing of outpatient PPC was not associated with ACP documentation or other EOL outcomes. In the entire cohort, 73% of PPC patients received hospice, 74% had a DNR order, 87% did not receive CPR at EOL, and 90% died in their preferred location. Conclusions: When using a cutoff of 12 weeks from diagnosis, outpatient PPC timing was only associated with location of death metrics, likely due to high-quality PPC and EOL care among all patients.
Lee A; DeGroote NP; Brock KE
Journal of Palliative Medicine
2023
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/10.1089/jpm.2023.0063" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0063</a>
"I'm Afraid If This Goes Wrong… What Will Become of Me?": The Psychological Experience of Grandparents in Pediatric Palliative Care
Palliative Care; pediatric palliative care; family; life-limiting conditions; grandparents; psychological experience
Portugal has been identified as the European country with the most rapid evolution of Pediatric Palliative Care provision, where approximately 7800 children have life-limiting conditions. This is a highly complex experience not only for the children and their parental caregivers, but also for their healthy siblings and grandparents. The present descriptive-exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in grandparents. A total of 19 families, consisting of 15 grandmothers and 4 grandfathers, completed a sociodemographic and clinical data sheet and a semi-structured interview was conducted in which they shared their testimony. The results of the thematic analysis highlighted an integrated view on 10 important dimensions in the grandparental experience and promoted creative responses by means of their own perspective. However, it has some limitations, such as the small sample size and the data collection procedure via telephone. The results contribute to the design of specific intervention methodologies in an ecosystemic approach and suggest further research to explore more protective factors and communication with health professionals. For psychological intervention, it is suggested considering the identification of individual and family resources that contribute to the activation of key processes in resilience and posttraumatic growth.
Nogueira AJ; Ribeiro MT
Healthcare
2023
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/healthcare11172391" target="_blank" rel="noreferrer noopener">10.3390/healthcare11172391</a>
Psychosocial well-being of siblings of pediatric patients in palliative home care
Home Care Services; Pediatric palliative care; quality of life; home care; siblings; family support
Dinkelbach L; Kohler M; Galushko M; Pieper L; Kuhlen M; Danneberg M; Dechert O; Trocan L; JanBen G
J Pain Symptom Manage
2023
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.2023.08.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.08.022</a>
Pediatric Palliative Care: Insights into Assessment Tools andReview Instruments
Palliative Care; pain; quality of life; pediatric palliative care; symptoms; assessment tools
The proper assessment of needs and outcomes in pediatric palliative care (PPC) is imperativeto ensure the best possible service to patients and families. However, given the multidimensionalnature of PPC, the low number of patients in this setting, the heterogeneity of diseases, the presenceof cognitive impairment in many patients, and the physiological development of children, outcomescan be complex and difficult to measure. Consequently, in this context, the use of standardizedand validated tools to assess the needs of children and families, to assess symptom severity, andto estimate the quality of PPC service represent a current need. Even if efforts have been made tostandardize approaches and tools for palliative care in adults, to our knowledge, a similar comprehensiveassessment of PPC has not yet been conducted to date. This narrative review provides anoverview and discusses the evaluation of tools currently applied in PPC, with an educational intentfor healthcare providers. We found that several instruments are available to assess different dimensionsof PPC. We proposed a classification into eligibility tools, patient and family needs assessmenttools, and care assessment tools. At present, two main eligibility tools exist, the PaPaS Scale and theACCAPED Scale questionnaire. Most of the tools for patient and family needs assessment have notbeen specifically validated in the PPC setting, and many may be more readily applied in researchsettings rather than in daily practice. Similar considerations can be made for tools assessing QoL,while tools assessing PPC service quality seem to be easily applied. Efforts to develop new specifictools and validate existing ones are undoubtedly advocated. However, in the patient's best interest,PPC healthcare providers should start using available tools, regardless of their validation status.
Papa S; Mercante A; Giacomelli L; Benini F
Children (Basel)
2023
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/children10081406" target="_blank" rel="noreferrer noopener">10.3390/children10081406</a>
Measuring Knowledge of Healthcare Providers on Pediatric Palliative Care with an Online Questionnaire Based on the National Core Curriculum in Italy
Palliative Care; pediatric palliative care; Questionnaires; Italy; education; training; pain therapy; questionnaire development
There is a lack of highly reliable tools evaluating healthcare professionals' competences on Pediatric Palliative Care (PPC) and Pain Therapy (PT). The aim of this study is to document the development of an online questionnaire to assess Perceived, Wished and Actual Knowledge of healthcare workers on PPC/PT. The tool was built on the basis of the Italian Society for Palliative Care PPC Core Curriculum (CC) for physicians, nurses and psychologists. Face validity, internal consistency and the underlying structure were evaluated after a field testing in a referral hospital, Friuli-Venezia Giulia, Italy. One hundred five respondents completed the questionnaire. High internal consistency for both scales of Perceived and Wished Knowledge was found (α = 0.95 and α = 0.94, respectively). Psychologists reported higher levels of self-Perceived skills on the psychosocial needs of the child and family at the end of life (p = 0.006), mourning (p = 0.003) and ethics and deontology in PT/PC (p = 0.049). Moreover, when Actual Knowledge was tested, they also provided the highest number of correct answers (p = 0.022). No differences were found by profession for Wished Knowledge. The questionnaire showed promising psychometric properties. Our findings suggest the need of continuous training in this field and identify contents to be addressed in future training programs.
Zanello E; Vecchi R; Zamagni G; Biagi MC; Bruno I; Cragnolin E; Danielli E; Paoletti S; Rabusin M; Ronfani L; Pessa Valente E
Healthcare
2023
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<a href="http://doi.org/10.3390/healthcare11131971" target="_blank" rel="noreferrer noopener">10.3390/healthcare11131971</a>
Pediatric Advance Care Planning: A Scoping Review
pediatric palliative care; scoping review; Advance Care Planning; pediatric advance care planning
To assess current practice and provide a basis for a provincial template, clinicians at a Canadian pediatric hospice reviewed the literature surrounding pediatric advance care planning (pACP) documentation, process, and implementation for children/youth. The scoping review protocol was developed in accordance with the Joanna Briggs Institute methodology for scoping reviews, and was prospectively registered on the Open Science Framework. MEDLINE, Embase, CINAHL, the Web of Science Core Collection, and Google Scholar, as well as sources of unpublished studies and grey literature, were reviewed. Sixty-four articles met the criteria. Fifteen pACP documentation forms/tools were also identified. Overall, the included articles highlighted that pACP should be a structured, collaborative and iterative process between the family and a trusted or relevant healthcare provider, encompassing medical and non-medical issues. Few articles provided insights into specific elements recommended for advance directive forms. Identified strategies for implementation included a structured, step-by-step pACP interventional tool along with ongoing training, mentorship, and defined organizational structures for the clinician. No single specific ACP tool was acknowledged as the gold standard. Use of a pACP tool, along with ongoing provider education and communication skill development, standardized/accessible documentation, and system-wide quality improvement support, were noted as integral components of pACP.
Lusney N; van Breemen C; Lim E; Pawliuk C; Hussein Z
Children
2023
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<a href="http://doi.org/10.3390/children10071179" target="_blank" rel="noreferrer noopener">10.3390/children10071179</a>
The Role of Pediatric Palliative Care Following Nonaccidental Trauma
Palliative Care; pediatric palliative care; pediatric hospice care; nonaccidental trauma; pediatric hospital palliative care
All children experiencing child maltreatment/neglect require child abuse experts to offer the complex care needed, and for the child with potential life-limiting injuries, both child abuse and palliative care experts are integral to the team. The current literature describes the involvement of child abuse pediatrics after patients are already engaged with pediatric palliative care (PPC). Here we describe a case of an infant who suffered injuries after nonaccidental trauma (NAT) and the subsequent role of PPC. In the case described, PPC was consulted in the context of a grave neurological prognosis after NAT. The mother retained full decision-making rights, and she wanted to protect her daughter from a life dependent on others and medical technology. Our team supported the mother in the face of multiple layers of loss-her daughter, her relationship with the perpetrator, her home, and the threat of job loss due to time away.
Henderson TG; Graff AH; Thorvilson MJ
Journal of Palliative Medicine
2023
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<a href="http://doi.org/10.1089/jpm.2023.0165" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0165</a>
The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers
Humans; Parents; Child; Palliative Care; Adult; Qualitative Research; Health Personnel; Palliative Care; Terminally Ill; Terminally Ill; Terminally ill children; Dignity; Mainland China; Pediatric Palliative care; Respect
BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based on the Chochinov Dignity Model. METHODS: This is a descriptive qualitative study. Participants included a total of 11 parents and 14 healthcare providers who were recruited from a tertiary children's hospital in Beijing and the Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association using purposive sampling. Thematic framework analysis was used to analyze data. RESULTS: The themes of the empirical Dignity Model were broadly supported in this study, but some themes were interpreted differently in the child population. Compared with the original model, some child-specific themes were identified including acknowledging regret, a sense of security, the company of important loved ones, realizing unfinished wishes, decent and dignified death, resolving family disputes, and fairness. CONCLUSIONS: This is the first study on Dignity Model for terminal children. Knowledge of children's dignity can promote reflection of healthcare providers and caregivers regarding the values underlying their performance in pediatric palliative care, and develop certain practical interventions to strengthen children and their families' sense of dignity at end of life.
Cai S; Guo Q; Lin J; Deng C; Li H; Zhou X
BMC Palliative Care
2023
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<a href="http://doi.org/10.1186/s12904-023-01206-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01206-4</a>
Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems
Behavior Problems; child behavior problems; Chronic Illness; complex chronic conditions; families; Family; Palliative Care; pediatric palliative care; Pediatrics; posttraumatic growth; Posttraumatic Growth; siblings; Siblings
Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. Results: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. Conclusion: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Journal of Pediatric Psychology
2017
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<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsw053</a>
Epidermolysis Bullosa in Pediatric Palliative Care: A Case Series
Palliative Care; epidermolysis bullosa; pediatric palliative care; decision making; dermatology; Eb
Background: Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative care needs of children with severe EB are poorly described. Aim: The aim of this case series was to examine the contribution of a pediatric palliative care service to the complex health care needs of children with severe EB. Methods: We present a case series of five children with severe forms of EB who were known to the state-wide Victorian Paediatric Palliative Care Service, with a discussion of our learnings in caring for these children and their families. Results: Medical treatment decision making in EB provokes complex ethical, psychological, personal, and professional dilemmas. This case series highlights the diversity of management approaches that may be considered, each tailored to the unique context of the child and family.
Ball K; Camilleri S; Kiefel S; Schulz I; Weston L; Sacks B
Journal of Palliative Medicine
2023
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<a href="https://www.liebertpub.com/doi/10.1089/jpm.2022.0559">10.1089/jpm.2022.0559</a>
Competencies for Psychology Practice in Pediatric Palliative Care
competencies; critical illness; end-of-life care; interdisciplinary; Palliative Care; pediatric palliative care; Self Psychology
OBJECTIVE: Pediatric psychologists have unique expertise to contribute to the care of youth with serious illnesses yet are not routinely integrated into pediatric palliative care (PPC) teams. To better define the role and unique skillset of psychologists practicing in PPC, support their systematic inclusion as part of PPC teams, and advance trainee knowledge of PPC principles and skills, the PPC Psychology Working Group sought to develop core competencies for psychologists in this subspecialty. METHODS: A Working Group of pediatric psychologists with expertise in PPC met monthly to review literature and existing competencies in pediatrics, pediatric and subspecialty psychology, adult palliative care, and PPC subspecialties. Using the modified competency cube framework, the Working Group drafted core competencies for PPC psychologists. Interdisciplinary review was conducted by a diverse group of PPC professionals and parent advocates, and competencies were revised accordingly. RESULTS: The six competency clusters include Science, Application, Education, Interpersonal, Professionalism, and Systems. Each cluster includes essential competencies (i.e., knowledge, skills, attitudes, roles) and behavioral anchors (i.e., examples of concrete application). Reviewer feedback highlighted clarity and thoroughness of competencies and suggested additional consideration of siblings and caregivers, spirituality, and psychologists' own positionality. CONCLUSIONS: Newly developed competencies for PPC psychologists highlight unique contributions to PPC patient care and research and provide a framework for highlighting psychology's value in this emerging subspecialty. Competencies help to advocate for inclusion of psychologists as routine members of PPC teams, standardize best practices among the PPC workforce, and provide optimal care for youth with serious illness and their families.
Thompson AL; Schaefer MR; McCarthy SR; Hildenbrand AK; Cousino MK; Marsac ML; Majeski J; Wohlheiter K; Kentor RA
Journal of Pediatric Psychology
2023
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<a href="http://doi.org/10.1093/jpepsy/jsad007" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsad007</a>
Addressing 10 Myths About Pediatric Palliative Care
cancer; children; end-of-life; myths; pain; Palliative Care; pediatric palliative care
With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity and lengthy hospitalizations, which can be associated with a poorer quality of life. This is where pediatric palliative care (PPC) can play a significant role. PPC is a specialty of healthcare that focuses on the prevention and relief of suffering in children with serious conditions. Unfortunately, despite the well-identified need for PPC services across pediatric specialties, multiple misconceptions persist. Common myths about palliative care are identified and deconstructed in light of the most recent evidenced-based references in the field to provide guidance to healthcare providers to address these. PPC is often associated with end-of-life care, loss of hope, and cancer. Some healthcare providers and parents also believe that information like diagnosis should be withheld from children for their emotional protection. These examples of misconceptions hinder the integration of pediatric palliative care and its additional layer of support and clinical expertise. PPC providers have advanced communication skills, are able to instill hope in the face of uncertainty, are trained to initiate and implement individualized pain and symptom management plans, and understand how to improve the quality of life in children with serious illnesses. Improved awareness about the scope of PPC is needed to ensure that children benefit from the maximum expertise and support throughout their complex health trajectories.
Sadler K; Khan S; AlGhamdi K; Alyami HH; Nancarrow L
American Journal of Hospice and Palliative Care
2023
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<a href="http://doi.org/10.1177/10499091231174202" target="_blank" rel="noreferrer noopener">10.1177/10499091231174202</a>
Patterns of Pediatric Palliative and End-Of-Life Care in Neonatal Intensive Care Patients in the Southern U.S
Terminal Care; Infant Newborn; end-of-life care; pediatric palliative care; Neonatal intensive care; intensity of care
OBJECTIVE: Describe pediatric palliative care (PPC) patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. DESIGN: Retrospective cohort analysis SETTING/ SUBJECTS: Infants who received PPC consultation in the NICU before death in two NICUs (in Alabama and Mississippi) from 2009-2017 (n=195). MEASUREMENTS: Medical record abstraction included: clinical characteristics of NICU infants, palliative and end-of-life care characteristics, patterns of PPC, and intensive medical treatments in the last 48 hours of life. RESULTS: The sample was racially (48.2% Black) and geographically (35.4% rural) diverse. Most infants died after withdrawal of life-sustaining interventions (58%) and had do not attempt resuscitation orders documented (75.9%); very few infants enrolled in hospice (6.2%). Initial PPC consult occurred a median of 13 days after admission and a median of 17 days before death. Infants with a primary diagnosis of genetic or congenital anomaly received earlier PPC consultation (p= 0.02) compared to other diagnoses. In the last 48 hours of life, NICU patients received intensive interventions including mechanical ventilation (81.5%), CPR (27.7%) and surgeries or invasive procedures (25.1%). Black infants were more likely to receive CPR compared to White infants (p= 0.04). CONCLUSION: Overall, PPC consultation occurred late in NICU hospitalizations, infants received high-intensity medical interventions in the last 48 hours of life, and there are disparities in intensity of treatment interventions at end of life. Further research is needed to explore if these patterns of care reflect parent preferences and goal concordance.
Currie ER; Wolfe J; Boss R; Johnston EE; Paine C; Perna SJ; Buckingham S; KcKillip KM; Li P; Dionne-Odom JN; Ejem D; Morvant A; Nichols C; Bakitas MA
Journal of Pain and Symptom Management
2023
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.2023.01.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.01.025</a>
Measuring Pediatric Palliative Care Quality: Challenges and Opportunities
Palliative Care; Pediatric palliative care; quality measurement; quality of care; quality improvement
Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality. This paper provides an overview of PPC quality measurement, including challenges, current initiatives, and future opportunities. While important strides toward addressing quality measurement challenges in PPC have been made, including ongoing quality measurement initiatives like the Cambia Metrics Project, the PPC What Matters Most study, and collaborative learning networks, more work remains. Providing high-quality PPC to all children and families will require a multi-pronged approach. In this paper, we suggest several strategies for advancing high-quality PPC, which includes 1) considering how and by whom success is defined, 2) evaluating, adapting, and developing PPC measures, including those that address care disparities within PPC for historically marginalized and excluded communities, 3) improving the infrastructure with which to routinely and prospectively measure, monitor, and report clinical and administrative quality measures, 4) increasing endorsement of PPC quality measures by prominent quality organizations to facilitate accountability and possible reimbursement, and 5) integrating PPC-specific quality measures into the administrative, funding, and policy landscape of pediatric healthcare.
Boyden JY; Bogetz JF; Johnston EE; Thienprayoon R; Williams CSP; McNeil MJ; Patneaude A; Widger KA; Rosenberg AR; Ananth P
Journal of Pain and Symptom Management
2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.01.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.01.021</a>
An Interprofessional Team-Based Intervention to Address Barriers to Initiating Palliative Care in Pediatric Oncology: A Multiple-Method Evaluation of Feasibility, Acceptability, and Impact
oncology; Pediatric palliative care; feasibility; codesign; team cohesion; team collaboration
CONTEXT: Many 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. OBJECTIVES: To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals. METHODS: A 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. RESULTS: Twenty-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. CONCLUSION: An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.
Walter JK; Hill DL; Schall TE; Szymczak JE; Parikh S; DiDomenico C; Carroll KW; Nye RT; Feudtner C
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2021.06.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.06.008</a>
Evaluating Palliative Opportunities in Pediatric Patients with Leukemia and Lymphoma
lymphoma; oncology; pediatric palliative care; end-of-life; leukemia; palliative opportunity
BACKGROUND: Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care (PC) consultation and often undergo intensive end-of-life (EOL) care. We examined "palliative opportunities," or events when the integration of PC would have the greatest impact, present during a patient's hematologic malignancy course and relevant associations. METHODS: A single-center retrospective review was conducted on patients aged 0-18 years with a hematologic malignancy who died between 1/1/12 and 11/30/17. Demographic, disease, and treatment data were collected. A priori, nine palliative opportunity categories were defined. Descriptive statistics were performed. Palliative opportunities were evaluated over temporal quartiles from diagnosis to death. Timing and rationale of pediatric PC consultation were evaluated. RESULTS: Patients (n = 92) had a median of 5.0 (interquartile range [IQR] 6.0) palliative opportunities, incurring 522 total opportunities, increasing toward the EOL. Number and type of opportunities did not differ by demographics. PC consultation was most common in patients with lymphoid leukemia (50.9%, 28/55) and myeloid leukemia (48.5%, 16/33) versus lymphoma (0%, 0/4, p = 0.14). Forty-four of ninety-two patients (47.8%) received PC consultation a median of 1.8 months (IQR 4.1) prior to death. Receipt of PC was associated with transplant status (p = 0.0018) and a higher number of prior palliative opportunities (p = 0.0005); 70.3% (367/522) of palliative opportunities occurred without PC. CONCLUSION: Patients with hematologic malignancies experience many opportunities warranting PC support. Identifying opportunities for ideal timing of PC involvement may benefit patients with hematologic cancers and their caregivers.
Labudde EJ; DeGroote NP; Smith S; Ebelhar J; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Cancer Medicine
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/10.1002/cam4.3862" target="_blank" rel="noreferrer noopener">10.1002/cam4.3862</a>
Evaluating Palliative Opportunities Across the Age Spectrum in Children and Adolescent Patients with Cancer
pediatric palliative care; age; end of life; palliative opportunity
Purpose: Adolescent patients with cancer experience unique stressors due to their developmental stage, with increased physical, emotional, and social distress. Palliative care (PC) serves an important role in pediatric cancer care. We examined "palliative opportunities," or events during a patient's cancer course where subspecialty PC would be warranted and compared opportunities between adolescents and younger patients. Methods: Patients from a single center, 0-18 years of age at cancer diagnosis, who died from January 1, 2012, to November 30, 2017, were included. In this secondary analysis, patients were divided into cohorts based on age at diagnosis: 0-12 and 13-18 years. Demographic, disease, and treatment data were collected. Descriptive statistics and modeling were performed. Number, type, and timing of palliative opportunities and PC consultation timing and reason were evaluated across cohorts. Results: Of the 296 patients included for analysis, 27.7% were 13-18 years (82/296) at diagnosis. Frequency of palliative opportunities did not differ by age (median 7.0 [interquartile range 4.0 and 10.0] in both cohorts). PC consultation occurred in 36.5% (108/296), with neither rate nor timing differing by age group. PC consultations in adolescents were more often for symptom management (p = 0.0001). Adolescent patients were less likely to have a do-not-resuscitate order placed before death (61.0%, 50/82) compared to younger patients (73.8%, 158/214, p = 0.03). Conclusion: Adolescent patients with cancer did not experience more palliative opportunities than younger patients in this cohort, although they often have challenging psychological, family, and social stressors that were not identified. Incorporating additional palliative opportunities could enhance identification of stress and symptoms in adolescents with cancer such that PC could be timed to meet their needs.
Labudde EJ; DeGroote NP; Ebelhar J; Massie AM; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Journal of Adolescent and Young Adult Oncology
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/10.1089/jayao.2021.0081" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0081</a>
A Quality Improvement Project to Increase Palliative Care Team Involvement in Pediatric Oncology Patients
oncology; palliative care; pediatric palliative care; refractory cancer
BACKGROUND: Pediatric palliative care (PPC) for oncology patients improves quality of life and the likelihood of goal-concordant care. However, barriers to involvement exist. OBJECTIVES: We aimed to increase days between PPC consult and death for patients with refractory cancer from a baseline median of 13.5 days to ≥30 days between March 2019 and March 2020. METHODS: Outcome measure was days from PPC consult to death; process measure was days from diagnosis to PPC consult. The project team surveyed oncologists to identify barriers. Plan-do-study-act cycles included establishing target diagnoses, offering education, standardizing documentation, and sending reminders. RESULTS: The 24-month baseline period included 30 patients who died and 25 newly diagnosed patients. The yearlong intervention period included six patients who died and 16 newly diagnosed patients. Interventions improved outcome and process measures. Targeted patients receiving PPC ≥30 days prior to death increased from 43% to 100%; median days from consult to death increased from 13.5 to 159.5. Targeted patients receiving PPC within 30 days of diagnosis increased from 28% to 63%; median days from diagnosis to consult decreased from 221.5 to 14. Of those without PPC consult ≤ 30 days after diagnosis, 17% had template documentation of the rationale. CONCLUSION: Interventions utilized met the global aim, outcome, and process measures. Use of QI methodology empowered providers to involve PPC. Poor template use was a barrier to identifying further drivers. Future directions for this project relate to expanding the target list, creating long-term sustainability, formalizing standards, and surveying patients and families.
Farooki S; Olaiya O; Tarbell L; Clark NA; Linebarger JS; Stroh J; Ellis K; Lewing K
Pediatric Blood and Cancer
2020
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/10.1002/pbc.28804" target="_blank" rel="noreferrer noopener">10.1002/pbc.28804</a>
Defining and Timing of Palliative Opportunities in Children with Central Nervous System Tumors
central nervous system; oncology; pediatric palliative care; brain tumor; palliative opportunity
BACKGROUND: Children with brain and central nervous system (CNS) tumors experience substantial challenges to their quality of life during their disease course. These challenges are opportunities for increased subspecialty palliative care (PC) involvement. Palliative opportunities have been defined in the pediatric oncology population, but the frequency, timing, and factors associated with palliative opportunities in pediatric patients with CNS tumors are unknown. METHODS: A single-institution retrospective review was performed on children ages 0-18 diagnosed with a CNS tumor who died between January 1, 2012 and November 30, 2017. Nine palliative opportunities were defined prior to data collection (progression, relapse, admission for severe symptoms, intensive care admission, bone marrow transplant, phase 1 trial, hospice, do-not-resuscitate (DNR) order). Demographic, disease, treatment, palliative opportunity, and end-of-life data were collected. Opportunities were evaluated over quartiles from diagnosis to death. RESULTS: Amongst 101 patients with a median age at death of eight years (interquartile range [IQR] = 8.0, range 0-22), there was a median of seven (IQR = 6) palliative opportunities per patient, which increased closer to death. PC consultation occurred in 34 (33.7%) patients, at a median of 2.2 months before death, and was associated with having a DNR order (P = .0028). Hospice was involved for 72 (71.3%) patients. CONCLUSION: Children with CNS tumors suffered repeated events warranting PC yet received PC support only one-third of the time. Mapping palliative opportunities over the cancer course promotes earlier timing of PC consultation which can decrease suffering and resuscitation attempts at the end-of-life.
Massie AM; Ebelhar J; Allen KE; DeGroote NP; Wasilewski-Masker K; Brock KE
Neuro-Oncology Practice
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/10.1093/nop/npab020" target="_blank" rel="noreferrer noopener">10.1093/nop/npab020</a>
Evaluating the Need for Integrated Pediatric Palliative Care Services in a Pediatric Oncology Setting: A Retrospective Audit
Childhood cancer; Pediatric oncology; Pediatric palliative care; Early integration
OBJECTIVES: Early integrated palliative care has shown to improve the quality of life in patients with cancer. During the past decade, pediatric palliative care has become an established area of medical expertise, however due to scant information available regarding the triggers for referral and referral practice very few children receive a formal palliative care consult. MATERIALS AND METHODS: A retrospective audit of medical case records of pediatric oncology patients over a period of 1 year from September 30, 2019, to September 30, 2020, was conducted. Demographic details, diagnosis, staging, clinical parameters, reason for referral, and palliative care plan were captured in a predesigned pro forma. RESULTS: Among 126 children with cancer, 27 (21.4%) patients were referred to palliative care. Majority 21 (77%) referrals were inpatient consults. Symptom management 17 (44.7%) was the most common trigger for referral followed by referrals for psychosocial support 12 (14.4%). Children with solid tumors 16 (59%) were more often referred than hematological malignancies. Among those needing end of life care, 8 (88.8%) out of 9 families preferred home than hospital. CONCLUSION: Low incidence of palliative care referral and presence of symptoms as a trigger for palliative care referral suggests gaps in the integrated approach. The study findings prompt a review of palliative care referral criteria and referral practice in a pediatric oncology setting.
Bhat KV; Rao KS; Vijayasekharan K; Venkatagiri AM; Ashwini S; Singhai P; Rao SR; Gupta M; Salins N
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_460_20" target="_blank" rel="noreferrer noopener">10.25259/ijpc_460_20</a>
Palliative Care in High and Low Resource Countries
palliative care; pediatric palliative care; coordination; pain management; human development index; individualized care planning
Palliative Care (PC) is defined by the World Health Organization (WHO) as a support given by multiple disciplines in order to improve the quality of life of both patients and their caregivers, throughout the disease course, from diagnosis to end-of-life. PC aims to prevent and treat symptoms and side effects of the disease and its treatment. PC is well developed in most high income countries; however in most low income settings, where, approximately 80% of patients with cancer requiring PC care for advanced disease live, PC services are still uncommon. Health indicators monitoring global PC development are policy, education, use of medicines, service provision and professional activity. Globally PC development may be categorized as: Group 1 (no known hospice-PC activity), Group 2 (capacity-building activity), Groups 3a Isolated PC provided, 3b Generalized PC provided, 4a hospice-PC services at a stage of integration into regular service provision and 4b hospice-PC services at a stage of advanced integration into regular service provision. Spirituality is an essential element of patient-centered PC. The use of complementary and traditional medicine (CTM) in Middle Eastern countries is widespread. There are wide discrepancies in cancer care and PC in many regions in the world. The Individualized Care Planning and Coordination (ICPC) Model is designed to facilitate the advance care planning with continuity of all the measures like symptom control or emotional, social and spiritual care of both the patient and the family during the disease steps like relapse or end of life.
Kebudi R; Cakir FB; Silbermann M
Current Pediatric Reviews
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/10.2174/1573396317666210405143649" target="_blank" rel="noreferrer noopener">10.2174/1573396317666210405143649</a>
Advancing Pediatric Palliative Care in a Low-Middle Income Country: An Implementation Study, a Challenging but Not Impossible Task
Pediatric palliative care; Pediatric; Implementation; Latin America; Terminal care; Palliative medicine; authorship and/or publication of this article.; Program
BACKGROUND: The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted services for adults, leaving the pediatric population unaddressed. Examples of such services are scarce and should be portrayed in scientific literature to inform decision-makers and service providers on models of care available to tackle the burden of Pediatric Palliative Care (PPC) in Low-and middle-income countries (LMIC). The purpose of this study is to describe the implementation of a pediatric palliative care program, "Taking Care of You" (TCY), in a tertiary care, university hospital in Cali, Colombia. METHODS: A program's database was built with children between 0 to 18 years old and their families, from year 2017 to 2019. Descriptive analysis was carried out to evaluate the impact of the program and service delivery. A theory-based method was directed to describe the PPC program, according to the implementation of self-designed taxonomy, mapping theoretical levels and domains. Clinical outcomes in patients were included in the analysis. RESULTS: Since 2017 the program has provided PPC services to 1.965 children. Most of them had an oncologic diagnosis and were referred from hospitalization services (53%). The number of ambulatory patients increased by 80% every trimester between 2017 and 2018. A 50% increase was reported in hospitalization, emergency, and intensive care units during the same time period. CONCLUSIONS: The program addressed a gap in the provision of PPC to children in Cali. It shows effective strategies used to implement a PPC program and how the referral times, coordination of care, communication with other hospital services were improved while providing compassionate/holistic care to children with life-limiting and threatening diseases and in end-of-life. The implementation of this program has required the onset of specific strategies and arrangements to promote awareness and education proving it a hard task, yet not impossible.
Garcia-Quintero X; Parra-Lara LG; Claros-Hulbert A; Cuervo-Suarez MI; Gomez-Garcia W; Desbrandes F; Arias-Casais N
BMC Palliative Care
2020
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/s12904-020-00674-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00674-2</a>
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 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>
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
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<a href="http://doi.org/10.1001/jamanetworkopen.2022.1245" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.1245</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
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<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>
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
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<a href="http://doi.org/10.2196/23783" target="_blank" rel="noreferrer noopener">10.2196/23783</a>
"What Would Give Her the Best Life?": Understanding Why Families Decline Pediatric Home Ventilation
pediatric decision making; pediatric palliative care; pediatric quality of life; Qualitative Research; tracheostomy; Ventilators; Mechanical
Background: Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown about the families who decline. Objective: To describe the rationales of families who decline home ventilation. Design: Semi-structured interview study. Setting/Subjects: We interviewed 16 families in hospitals across 3 U.S. states, identified by their clinicians as previously deciding to not pursue home ventilation via tracheostomy within the past five years. Measurements: Targeted content and narrative analyses were used to understand family intentions and reasons for declining. Results: The clinical and social context varied among the 16 families in this study. Families' intentions in saying "no" fell into two categories: (1) definitive "No": Families who stood firm on in their decision and (2) contingent "No": Families who may consider this in the future. Families described four reasons why their child did not receive home ventilation: (1) concern about medical impacts, (2) concern about physical and/or communication restrictions, (3) concern that there would be no clear health benefit, and (4) concern about no clear meaningful life. Most families mentioned all four reasons, but concern about no clear meaningful life predominated. Conclusions: Though these families did not see home ventilation as an appropriate option, each reported a complex interplay of intentions behind and reasons for declining. Clinicians who counsel families about home ventilation could share the reasons that families commonly decline this intervention to facilitate a balanced discussion.
Shipman KJ; Mercer AH; Raisanen JC; Jabre NA; Vo HH; Miles A; Shepard J; Henderson CM; Boss RD; Wilfond BS
Journal of Palliative Medicine
2023
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/10.1089/jpm.2022.0426" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0426</a>
Pediatric Home-Based Hospice and Palliative Medicine Provider Home Visits: A Multisite Study
home visit; home-based palliative care and hospice; Hospice; Palliative Care; pediatric palliative care
Background: Pediatric home-based palliative care and/or hospice provider (Physician, Advanced Practice Nurse, or Physician Assistant) home visits are an underexplored subject in the literature with little available descriptive data and limited evidence guiding how best to utilize them. Objectives: Describe the population receiving hospice and palliative medicine (HPM) provider home visits and characterize visit themes. Design: Retrospective chart review of electronic medical record (EMR) data Setting/Subjects: A total of 226 individuals 1 month to 21 years of age, who received an HPM provider home visit from January 1, 2013, to December 31, 2018; two large quaternary medical centers in the Midwest. Measurements: Demographic data, content, and details from home visit abstracted from the EMR. Results: The three most common diagnostic groups receiving HPM provider home visits were neurological (42%), congenital chromosomal (26%), and prematurity-related (14%) conditions. Goals of care (GOC) were discussed at 29% of visits; most commonly, goals related to code status (42%), technology dependence (20%), and nutrition/hydration (15%). A change in GOC occurred in 44% of visits. Forms of anticipatory guidance addressed were nutrition (68%), side effects of treatment (63%), pain assessment (59%), decline/death (32%), and allow natural death/do not resuscitate/advance directives (26%). Conclusion: HPM provider visits are diverse in content and changes in plan of care with potential for proactive identification of GOC and provision of important anticipatory guidance around patient decline and end of life. Further research is indicated to establish which populations benefit most and how to leverage this scarce resource strategically.
Cicozi K; Smith SM; Grossoehme DH; Hiltunen A; Roth C; Richner G; Kim SS; Friebert S
Journal of Palliative Medicine
2023
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/10.1089/jpm.2022.0480" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0480</a>
The Supportive Care Clinic: A Novel Model of Embedded Pediatric Palliative Oncology Care
CONTEXT: Pediatric palliative care (PPC) improves quality of life and end-of-life outcomes for children with cancer, but often occurs late in the disease course. The Supportive Care Clinic (SCC) was launched in 2017 to expand outpatient PPC access. OBJECTIVES: To describe the inaugural four years (2017-2021) of an academic, consultative, embedded SCC within pediatric oncology. METHODS: Descriptive statistics (demographic, disease, treatment, visit, and end-of-life) and change over time were calculated. RESULTS: During the first four years, 248 patients (51.6% male; 58.1% White; 35.5% Black; 13.7% Hispanic/Latino) were seen in SCC, totaling 1,143 clinic visits (median 4, IQR 2,6), including 248 consultations and 895 follow-up visits. Clinic visits grew nearly 300% from year one to four. Primary diagnoses were central nervous system tumor (41.9%), solid tumor (37.5%), and leukemia/lymphoma (17.3%). The first point of PPC contact became SCC (70.6%) for most referred patients. Among the 136 deceased patients (54.8%), 77.9% had a do-not-resuscitate or Physician Orders for Life Sustaining Treatment in place, and 72.8% received hospice care. When known (n = 112), 89.3% died in their preferred location. The time from SCC consultation to death increased from 74 to 226 days over the four years (P < 0.0001). The proportion of SCC consultations that occurred greater than 90 days from death increased from 39.1% in year one to 85.0% in year four. CONCLUSION: Embedded SCC clinics can be successful, achieve steady growth, improve referrals and timing of PPC, and enhance end-of-life care for children with cancer. Large pediatric cancer centers should include SCC outpatient services.
Brock KE; DeGroote NP; Roche A; Lee A; Wasilewski K
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.2022.05.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.007</a>
Lessons in Stories: Why Narrative Medicine Has a Role in Pediatric Palliative Care Training
narrative medicine; pediatric palliative care; reflection; training
Narrative medicine is introduced and explored as a potential tool for developing competency in medical training, including reduction of burnout, sustaining empathy, and allowing for reflective practice. Developing cultural humility, communication skills, ethics, community building, and advocacy are also reviewed as domains that may be bolstered by training in narrative. Applications specific to pediatric palliative care are suggested, along with avenues for further research.
Lanocha N
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/children8050321" target="_blank" rel="noreferrer noopener">10.3390/children8050321</a>
The Experiences of Parents of Children in Pediatric Palliative Care: A Qualitative Study
Experience; Mothers; Pediatric palliative care; Qualitative study
PURPOSE: This study aims to better understand the experiences of mothers of children receiving pediatric palliative care. DESIGN AND METHODS: The qualitative phenomenological method was used to determine the mothers' experiences. The study sample included 15 mothers. Individual interviews, an introductory information form and a semi-structured interview form were used for data collection. The data were analyzed with Colaizzi's seven-step method. MAXQDA was used for coding and creating themes. RESULTS: Three main themes of the interviews emerged; family experiences, social life and care in the palliative care unit. The mothers said that family relationships were affected, that they experience fear of loss, that they experience depression, that all responsibility for treatment and care lies with the mothers, and that there is no social support. Mothers said that they are in the same place as mothers of children in similar situations and that they are happy and comfortable because they have single rooms. In addition, the mothers stated that they are very afraid of the COVID-19 virus infecting their children and therefore losing their children. CONCLUSIONS: The mothers experienced some problems such as fear of loss, depression, care burden, social support, exclusion, daily life, social relationships, feeling safe, and emotional effect. PRACTICE IMPLICATIONS: Pediatric nurses need to understand mothers' anxiety, grief, relationships with their children, and coping strategies to provide support.
Karakul A; Kıratlı D; Akgül AE; Çelik T
Journal of Pediatric 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/10.1016/j.pedn.2022.08.015" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.08.015</a>
End of Life in Pediatrics. [French]
Child; Death; Family; Humans; Neoplasms; Neoplasms/th [Therapy]; Palliative Care; accompagnement; cancer; caregiving practice; parent; pediatric palliative care; pratique soignante; soins palliatifs pediatriques; support
When medicine proves to be powerless to cure a child suffering from cancer, there remains the path of accompaniment by what we call palliative care. This is very different from the treatments that have been administered up to now - since they are not intended to cure - and its main objective is to create a comfortable living environment, a warm and reassuring climate around the young patient and his family. Copyright © 2022. Published by Elsevier Masson SAS.
Malezieux ML
Soins, Pediatrie, Puericulture
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.spp.2022.07.009" target="_blank" rel="noreferrer noopener">10.1016/j.spp.2022.07.009</a>
Empowering Pediatric Palliative Homecare Patients and Caregivers with Symptom Management Plans
Electronic health record; Home care; Pediatric palliative care; Quality improvement; Symptom management
Pediatric palliative home-based care has been shown to improve symptoms, quality of life, and coordination of care. Despite these successes, hospital utilization in our own palliative home-based care population remained high as some caregivers lacked confidence to manage symptoms at home and had difficulty in recalling or accessing "sick care plans." Our team developed the Symptom Management Plan (SMP), a multi-system "sick care plan," as a quality improvement project with the aim of improving caregiver confidence to manage symptoms at home. An Electronic Health Record-based SMP template was created for common symptoms: respiratory distress, seizures, feeding intolerance, and constipation with core subspecialists' input. Individualized SMPs were created and reviewed with caregivers at every subsequent palliative home nursing visit. Caregivers were surveyed on their confidence 3 and 6-months post-implementation. Resource utilization was analyzed throughout implementation. At 6 months, 73% of caregivers reported "better" or "much better" confidence in managing their child's symptoms after using the SMP, and 76% of caregivers perceived the SMP prevented urgent care or emergency department (ED) visits. After the SMP was launched, the rate of ED visits decreased from 0.86 to 0.47 per 100 patient-days, and admissions decreased from 0.56 to 0.39 per 100 patient-days. These rates further decreased to 0.31 ED visits and 0.19 admissions per 100 patient-days within 4 and 6 months. Introducing the SMP for our home-based palliative care patients was associated with improved caregiver confidence in managing acute symptoms at home and a reduction in hospital utilization.
Larrow A; Doshi A; Fisher E; Patel A; Marc-Aurele K; Rhee KE; Beauchamp-Walters J
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.2022.06.015">10.1016/j.jpainsymman.2022.06.015</a>
Music Therapy and Pediatric Palliative Care: Songwriting with Children in The End-Of-Life
Children; End-of-life; Music therapy; Pediatric palliative
Children’s needs in pediatric palliative care (PPC) are complex and are determined by age, the course of the disease, family structure, and cultural background [1]. The child’s family system also has multiple needs which must be properly assessed and managed [2].
Children and their families need medical, social, and emotional support, attention to spiritual well-being, and accurate assessment and management of physical and psychological symptoms. The encompassing framework of care must be a dynamic model that can shift focus according to the needs of the patient at any given time [3] and that can offer high-quality communication and advanced-care planning. In end-of-life accompany, even greater care is required for the patient and their family by the highly specialized multi-disciplinary team [4] using a clear and well-organized interdisciplinary and interprofessional holistic approach [5, 6] and a biopsychosocial model of health [7]. [...]
Giordano F; Rutigliano C; Baroni M; Grassi M; Muggeo P; Santoro N
World Journal of Pediatrics
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/s12519-022-00578-6" target="_blank" rel="noreferrer noopener">10.1007/s12519-022-00578-6</a>
Study to Assess the Effectiveness of Simulation Technique to Overcome Misperceptions of Undergraduate Nursing Students' About Paediatric Palliative Care
Pediatric palliative care; Simulation; Perception; Nursing students
OBJECTIVES: The purpose of the current study is to suggest a powerful strategy to overcome the misperceptions of undergraduate nursing students' about paediatric palliative care (PPC), through simulation technique. MATERIALS AND METHODS: A one-group pre-test-post-test design was carried out to assess changes in undergraduate nursing students' representations about PPC before and after the exposure to a simulation experience. A total of 24 undergraduate nursing students at the Higher Institute of Health Sciences (HIHS) of Settat have taken part in this study. RESULTS: The results have shown that there was a significant difference between mean pre- and post-test scores (P = 0.00). CONCLUSION: The simulation technique can be a powerful pedagogical strategy to overcome undergraduate nursing students' misperceptions about PPC.
Hamdoune M; Gantare A
Indian Journal of 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/10.25259/ijpc_114_2021" target="_blank" rel="noreferrer noopener">10.25259/ijpc_114_2021</a>
Parental Perspective in Paediatric Palliative Care: A Systematic Review of Literature Using the PRISMA Method
Communication; Pediatric palliative care; Decision-making; Systematic review; Parental concerns; Perspective
Research in Parental Perspectives are pivotal in gaining understanding of parents' experiences, issues, concerns and attitude in pediatric palliative care which affects their decision making. However only a limited number of such studies have included the first-person perspective of Parents. The aim of this article is to understand the contribution of previous research on parental perspectives in pediatric palliative care through a systematic review of literature. Nine articles that met the inclusion criteria were accessed and seven key themes emerged; Psychological perspective, parental concerns, parental needs, parental attitude, spiritual perspective, cultural perspective and financial perspective. This review highlights requirement of more research into parental perspective if possible, covering all key aspects along with additional research in cultural perspective and development of validated tools, checklists and psychometric questionnaires for the assessment of these perspectives in various domains: spiritual, financial, psychological, cultural and social.
Srivastava R; Srivastava S
Indian Journal of 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/10.25259/ijpc_37_2021" target="_blank" rel="noreferrer noopener">10.25259/ijpc_37_2021</a>