Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium
adolescent; article; Belgium; cardiovascular disease; child; chronic disease; complex chronic condition; congenital disorder; data base; female; gastrointestinal disease; genetic disorder; groups by age; health care access; hematologic disease; hospital; hospital admission; hospitalized adolescent; hospitalized child; human; Icd-9; immune deficiency; infant; length of stay; major clinical study; male; malignant neoplasm; metabolic disorder; morbidity; neurologic disease; newborn; palliative therapy; patient care; patient referral; pediatric patient; pediatric ward; priority journal; respiratory tract disease; retrospective study; urinary tract disease
BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. OBJECTIVES: The aim of the study was to identify, over a 5-year period (2010-2014), the number of children and adolescents (0-19 years) living with a CCC, and also their referral to PLTs. METHODS: International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics. RESULTS: Over 5 years (2010-2014) in the Brussels region, a total of 22 721 children/adolescents aged 0-19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT. CONCLUSION: In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.
Friedel M; Gilson A; Bouckenaere D; Brichard B; Fonteyne C; Wojcik T; De Clercq E; Guillet A; Mahboub A; Lahaye M; Aujoulat I
BMJ Paediatrics Open
2019
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/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000547</a>
Dying child and nurses' mourning
Mourning; Nurse; Child; Death; Nurse; Nurse Care; Death; Child; Anger; Care; Child; Conference Abstract; Curriculum; Demography; Dying; Education; Guilt; Hospitalized Child; Human; Pediatric Hospital; Pediatric Nurse; Questionnaire; Sadness; Theoretical Study
Introduction: One of the most complex and emotional aspects of nursing is the interaction between the nurse and the dying child. The attitudes of nurses towards death, affect the quality of care. Objective(s): To investigate pediatric nurses' attitudes towards death. Method(s): Methodology: 170 nurses, working in pediatric hospital departments completed a questionnaire which included sociodemographic characteristics and information related to their previous training and clinical experience regarding death issues in general and dying children's care in particular. Result(s): 68.6% reported that the death of a child affects them very much, while 44.7% of the participants didn't feel well prepared to manage death issues. Pediatric nurses were greatly affected by children's death, expressing mainly feelings of sadness (44%), compassion (22%), guilt (22%) and anger (22%). 73% of the sample wished the hospitalized child, died when they were not present. 53.5% had been trained regarding the care of dying patients and the management of death and mourning as part of their curriculum and 21.2% had attended a relative seminar / lecture. The importance of proper and adequate education becomes particularly apparent considering that the majority of our sample either did not feel sufficiently prepared in order to deal with death and mourning, even though more than 70% of our participants had been relatively educated. Conclusion(s): The incorporation of the notions of death and care at end of life in the theoretical and practical fields of nursing will improve the quality of services offered at the end of life for patients and their families.
Zartaloudi A; Lekas C; Koutelekos I; Evangelou E; Kyritsi E
European Psychiatry
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/10.1192/j.eurpsy.2021.1075" target="_blank" rel="noreferrer noopener">10.1192/j.eurpsy.2021.1075</a>
Enhancing resilience in hospitalized children and adolescents
hospitalized child; Anxiety; biofeedback; California; Child; clinical psychology; Comorbidity; complication; distress syndrome; Female; Hospitalization; Human; Male; Mental Health; music; pain; Palliative therapy; pet therapy; PostTraumatic Stress Disorder; psychiatrist; psychosocial care; Socialization; wellbeing
Objectives: This presentation will describe a collaborative intervention that can enhance resilience in hospitalized patients when they are struggling with the emotional sequelae of their medical illness. The presentation will discuss the specialty services at the University of California, San Francisco, Benioff Children's Hospital (UCSF BCH) that work cooperatively to support salutogenesis (the origin of health), in contrast to pathogenesis. The efficacy of our multidisciplinary approach will be demonstrated through descriptions of changes in patients' mental status and subjective reports of distress from patients and parents. Methods: This seminar will present our multidisciplinary approach to enhancing well-being and supporting resilience. The presentation will describe the collaboration of several complementary specialties. Primary source material and anecdotal reports from clinical cases will be presented from these medical, psychological, and psychosocial disciplines. Results: At UCSF BCH, specialists play complementary roles in the effort to support the emotional well-being of hospitalized patients. The child and adolescent consultation-liaison psychiatrist provides insight into psychiatric comorbidities that may be contributing to distress and interfere with coping. Pharmacologic interventions target the symptoms of these comorbid illnesses. Pediatric palliative care physicians address the physiologic symptoms endured by children with serious medical illnesses. Clinical psychologists help to identify the feedback loop between anxiety and pain and enhance a sense of safety through empirically validated interventions for anxiety and traumatic stress. The Child Life Specialist's role includes preparation for procedures; creating and implementing a coping plan for individual procedures and overall hospitalization through art and music; and providing psychosocial support through socialization, medical play, pet therapy, and biofeedback. Conclusions: Diverse disciplines can work collaboratively to support the overall well-being of the hospitalized child and his/her family members by effectively promoting coping. This multidisciplinary approach to enhancing resilience enables children to thrive even if their illnesses are life-limiting.
2017
Ihle EC
Journal Of The American Academy Of Child And Adolescent Psychiatry
2017
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.jaac.2017.07.064" target="_blank" rel="noreferrer">10.1016/j.jaac.2017.07.064</a>
Feasibility and Acceptability of Recruiting Very Young Hospitalized Children Receiving Palliative Care to an Integrative Therapy Study (S743)
adolescent; child; conference abstract; controlled study; critically ill patient; feasibility study; female; follow up; foster care; hospitalized child; human; infant; major clinical study; male; palliative therapy; pilot study; Reiki
Objectives: * Discuss whether the Reiki intervention was feasible to implement with this population of very young hospitalized children receiving palliative care. * Discuss why parents thought the Reiki intervention was helpful to their child. Original Research Background: Previous work showed Reiki was feasible and acceptable to children ages 7-16 receiving palliative care at home. Because they are in a challenging developmental stage, very young children are seldom studied, especially when examining a hands-on intervention such as Reiki, a light touch therapy. Research Objectives: To assess the feasibility and acceptability of implementing a Reiki therapy intervention with children ages 1 to 5 years. Methods. This was a quasi-experimental one-group pilot study involving children ages 1-5 years, receiving palliative care, and expected to be hospitalized for three or more weeks. Children were excluded if they turned 6 during the study, were in foster care, or were critically ill. Children were screened and families approached if appropriate. At follow up, parents were asked if they would participate again and if they would continue Reiki sessions. Feasibility was calculated by the proportion of families approached who enrolled and completed at least 5/6 Reiki sessions and all measures. Results. Between March 2017 and July 2019, 90 children were screened, 28 families approached, and 16 families (57%) consented. Reasons for declining included concern that Reiki might interfere with other treatments, and the child didn’t like unfamiliar staff. Of those who consented, 14/16 (87.5%) completed at least 5/6 sessions and all measures. Halfway through the study, one child became critically ill and died due to their illness and another parent withdrew. Of the 14 that completed data collection,
Thrane S; Shaner V; Allmendinger-Goertz K; Ibach M; Friebert S
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2019.12.305" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.305</a>
How Do Hospitalised Children Die? The Context of Death and End-Of-Life Decision-Making
intensive care unit; Child; child; Decision Making; article; controlled study; female; human; major clinical study; male; resuscitation; retrospective study; palliative therapy; observational study; advance care planning; documentation; Only Child; nervous system; life sustaining treatment; cardiovascular disease; respiratory tract disease; infant; drug withdrawal; demographics; medical record; hospitalized child; pediatric patient; decision making; childhood mortality; treatment withdrawal
Serrano-Pejenaute I; Carmona-Nunez A; Zorrilla-Sarriegui A; Martin-Irazabal G; Lopez-Bayon J; Sanchez-Echaniz J; Astigarraga I
Journal of Paediatrics and Child Health
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/10.1111/jpc.16354" target="_blank" rel="noreferrer noopener">10.1111/jpc.16354</a>
Long-Term Follow-Up of Legacy Services Offered by Children's Hospitals in the United States
terminal care; palliative care; survey; palliative medicine; hospitalized child; hospice and palliative care nursing
Background: Our 2012 survey of providers described legacy services offered at children's hospitals nationwide. Since then, the science related to legacy interventions has advanced, resulting in increased recognition of the importance of legacy services. Yet, legacy interventions offered by children's hospitals have not been recently described. Objective: To describe current legacy services offered by children's hospitals in the United States and compare with our previous results. Design: Descriptive cross-sectional design. Setting/Subjects: Participants included providers (N = 54) from teaching children's hospitals in the United States. Measurements: Electronic REDCap survey. Results: Similar to our prior research, 100% of respondents reported that their hospital offers legacy activities with 98% providing such services as a standard of care. Notable increased numbers of children are participating in legacy interventions compared with the previous study, now with 40% (compared with 9.5% previously) of participants reporting >50 children per year. Patients being offered legacy activities include neonatal intensive care unit (NICU) patients, those with life-threatening traumatic injuries, those on life support for extended periods of time, and those referred to hospice. Although not statistically significant, the percentage of hospitals offering legacy-making to children with cancer, neurodegenerative diseases, and life-threatening illnesses is slightly increased from the prior time point. Conclusions: Children across developmental stages and illness contexts and their families can benefit from both the memories generated through the process of legacy services and the subsequent tangible products. Providers should continue to offer legacy opportunities to seriously ill children and their families across a wide array of settings and illness contexts.
Akard T; Burley S; Root MC; Dietrich MS; Cowfer B; Mooney-Doyle K
Palliative Medicine Reports
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/pmr.2021.0009" target="_blank" rel="noreferrer noopener">10.1089/pmr.2021.0009</a>
Palliative care utilization in hospitalized children with cancer
aged; article; brain cancer; cancer model; child; Childhood cancer; cohort analysis; controlled study; female; hospital admission; hospital cost; hospital mortality; hospitalization; hospitalized child; human; human tissue; length of stay; major clinical study; male; mortality risk; palliative therapy; physician; public health; resource allocation
Background: There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its patterns of use.
Cheng B T; Wangmo T
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.28013" target="_blank" rel="noreferrer noopener">10.1002/pbc.28013</a>
Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
Child Care; Childhood Disease; Chronic Disease; Parental Attitude; Patient-Reported Outcome; Personal Experience; Caregiver Support; Child; Emergency Care; Empowerment; Health Care Delivery; Health Care Quality;Hospice Care; Hospital Care; Hospitalized Child; Human; Long Term Care; Neonatal Intensive Care Unit; Palliative Therapy; Review; Shared Decision Making; Systematic Review; Terminal Care
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. DATA SOURCES: Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. STUDY SELECTION: Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. DATA EXTRACTION: A standardized data extraction tool was used. DATA SYNTHESIS: Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. CONCLUSION(S): Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience.Copyright © 2022 Lippincott Williams and Wilkins. All rights reserved.
Ang FJL; Finkelstein EA; Gandhi M
Pediatric Critical Care 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/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002996</a>
Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)
adult; cardiology; Caucasian; child; cohort analysis; conference abstract; controlled study; conversation; decision making; expectation; female; heart single ventricle; high school; hospitalization; hospitalized child; human; infant; intubation; length of stay; major clinical study; male; married person; medical record review; mother; prognosis; prospective study; pulmonary hypertension; pulmonary vein stenosis; recall; young adult
Objectives: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation between length of stay of a child with advanced heart disease and parent reports of conflicting information from physicians. Original Research Background and Objectives: Communication between parents and physicians is essential to high-quality care. For families of patients with AHD, understanding prognosis is critical to decision making and is associated with less perceived suffering at end of life. This is the first study to prospectively evaluate how parents of children with AHD perceive prognostic communication with their child's physicians.
Miller M K; Morell E; Feraco A; Goldberg S; Reichman J; Sahakian L; Sleeper L; Blume E
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2019.12.323" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.323</a>
Posttraumatic growth in hospitalized children and adolescents
hospitalized child; Attention; California; Child; childhood; Female; Human; injury; Male; Palliative therapy; psychiatrist; psychologist; Psychology; role stress; systematic review; wellbeing
Objectives: This presentation will describe the phenomenon of posttraumatic growth through a review of the literature on complex developmental trauma and salutogenesis. A description of a multidisciplinary approach to support posttraumatic growth (PTG) will also be presented. Methods: A review of the literature on adverse childhood events, complex developmental trauma,medical trauma in children, positive psychology, and PTG will be presented. This seminarwill thendescribe amultidisciplinary, collaborative approach [developed at University of California, San Francisco Benioff Children's Hospital (UCSF BCH)] to enhance well-being and support PTG. Results: There is much attention being paid to the role that complex developmental trauma and adverse childhood events (ACEs) play in determining the overall well-being of children and adolescents. One ACE that is particularly relevant to consultation-liaison (C/L) pediatric psychiatrists is the threat to bodily integrity; serious medical illness (and its treatment) is one such threat. ACEs have been associated with the maladaptive consequences of the stress response. However, it is important to highlight the auspicious role of stress in addition to its adaptive role (supporting survival). One positive aspect of stress is PTG where individuals gain strength and insight from crises. When medical trauma can be reframed as a stressor that promotes PTG, ACE is transformed from something pathogenic to an experience that is salutogenic. At UCSF BCH, a number of specialists play complementary roles in the effort to support salutogenesis. Our multidisciplinary, collaborative approach involves child and adolescent C/L psychiatrists, pediatric palliative care physicians, psychologists, and child life specialists in the effort to promote coping and enhance the emotional well-being of hospitalized patients. Conclusions: Medical trauma can be considered an ACE that challenges the resilience of both patients and their families. Interventions informed by the field of positive psychology can enhance resilience by supporting salutogenesis. Diverse disciplines can work collaboratively to support well-being and enhance PTG.
2017
Ihle EC
Journal Of The American Academy Of Child And Adolescent Psychiatry
2017
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.jaac.2017.07.593" target="_blank" rel="noreferrer">10.1016/j.jaac.2017.07.593</a>
The role of the courts in disagreements over the care of seriously ill babies
Experimental Therapy; Hospitalized Child; Legislation And Jurisprudence; Human; Infant; Long Term Care; Newborn; Terminal Care; Treatment Outcome; United Kingdom
Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.
Griffith R
British Journal Of Nursing
2017
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></a> <a href="http://doi.org/10.12968/bjon.2017.26.15.894" target="_blank" rel="noreferrer">10.12968/bjon.2017.26.15.894</a>
Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.
Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C
Journal of Pediatric Intensive Care
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/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</a>