Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal
children; hospital; nursing; pediatric palliative care; hope; qualitative research; therapeutic letters
PURPOSE: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. DESIGN AND METHODS: A purposive sample of 10 parents of inpatient children with CCCs was recruited from a pediatric palliative care unit in a Portuguese public hospital. A demographic form and audio-recorded semi-structured, face-to-face interviews were conducted with each participant to explore the experiences, processes, and meanings of hope, and to describe how parents of children receiving pediatric palliative care perceived the usefulness of receiving therapeutic letters. The interviews were transcribed verbatim, and using a thematic analysis, a systematic approach to data analysis was completed. FINDINGS: Data analysis resulted in three main themes including Trust in the Future; Strengthening Hope; and Moments of Hope. Findings highlight the positive influence of therapeutic letters including supporting parental hope, facilitating personal inner-strengthening, recognition of parental skills, and promotion of self-efficacy during hospitalization. The themes and related subthemes add value to the existing literature and highlight the need for supportive palliative nursing care aimed at promoting parental hope. PRACTICE IMPLICATIONS: To optimize the value of supporting parental hope, therapeutic letters can be delivered at the time of diagnosis, during times of celebration, and when learning the difficult tasks of daily childcare. Additional research can inform the development of a formal hope-based intervention to provide an evidence base from which to enhance the well-being of parental caregivers of children who have CCCs.
Fonseca R; Carvalho M; Querido A; Figueiredo MH; Bally J; Charepe Z
Journal for Specialists in Pediatric Nursing
2021
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<a href="http://doi.org/10.1111/jspn.12325" target="_blank" rel="noreferrer noopener">10.1111/jspn.12325</a>
Home or hospital as the place of end-of-life care and death: A grounded theory study of parents' decision-making
Decision-making; end-of-life; grounded theory; home care; hospital; parent; place of death
BACKGROUND: While several studies have examined 'what' families want with regard to the place of a child's end-of-life care and death, few have explored 'how' parents reach a decision. AIMS: (1) to develop a model explaining how parents of a child with a life-threatening illness in Greece decide about the place of end-of-life care and death; (2) to identify the factors affecting decision-making; (3) to consider the implications for clinical practice. DESIGN: Grounded theory study of bereaved parents using semi-structured open-ended interviews following Strauss and Corbin's principles of data collection and analysis. SETTING/PARTICIPANTS: Semi-structured interviews with 36 bereaved parents of 22 children who died at home (n = 9) or in a paediatric hospital (n = 13) in Athens, Greece. RESULTS: (1) Decisions regarding place of care and death were reached in one of four ways: consensus, accommodation, imposition of professional decisions on parents or imposition of parents' decisions without including professionals. (2) Six factors were identified as affecting decisions: awareness of dying, perceived parental caregiving competence, perceived professional competence, parents' view of symptom management, timing of decision-making, and being a 'good parent'. (3) Decisions were clear-cut or shifting. Few parents did not engage in decisions. CONCLUSION: Parents' decisions about place of end-of-life care and death are affected by personal, interpersonal, timing and disease-related factors. Parents are best supported in decision-making when information is presented clearly and honestly with recognition of what acting as 'good parents' means to them, and opportunities to enhance their caregiving competence to care for their child at home, if they choose so.
Papadatou D; Kalliani V; Karakosta E; Liakopoulou P; Bluebond-Langner M
Palliative Medicine
2020
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<a href="http://doi.org/10.1177/0269216320967547" target="_blank" rel="noreferrer noopener">10.1177/0269216320967547</a>
Effectiveness of virtual reality interventions for adolescent patients in hospital settings: Systematic review
adolescents; hospital; pain; anxiety; Systematic review; virtual reality
Background: Given the high level of interest and increasing familiarity with virtual reality among adolescents, there is great potential to use virtual reality to address adolescents' unique health care delivery needs while in hospital. While there have been reviews on the use of virtual reality for specific health conditions and procedures, none to date have reviewed the full scope of virtual reality hospital interventions for adolescents who are often combined with children as a homogenous group, despite the fact that adolescents experience virtual environments different from children. Objective(s): The aim of this review was to systematically identify available evidence regarding the use of virtual reality interventions for adolescent patients in hospital settings to evaluate effectiveness, suitability, and safety and identify opportunities for future research. Method(s): PubMed, PsycINFO, Medline, and Scopus databases were searched using keywords and phrases. Retrieved abstracts (n=1525) were double screened, yielding 276 articles for full-text screening. Of these, 8 articles met inclusion criteria. Data were extracted to a standardized coding sheet, and a narrative synthesis was performed due to the heterogeneity of the studies. Result(s): Four RCTs and 4 single-case reports were identified for inclusion, all of which aimed to reduce pain or anxiety. The scenarios targeted were burn pain, venipuncture, chemotherapy, preoperative anxiety, and palliative care. Three out of 4 RCTs found significant reductions in pain or anxiety outcomes measures when using virtual reality compared to standard care or other distraction techniques; however, only 1 study combined self-reported experiences of pain or anxiety with any physiological measures. Single-case reports relied primarily upon qualitative feedback, with patients reporting reduced pain or anxiety and a preference for virtual reality to no virtual reality. Conclusion(s): Virtual reality can provide a safe and engaging way to reduce pain and anxiety in adolescents while in hospital, particularly when virtual reality software is highly immersive and specifically designed for therapeutic purposes. As VR becomes more accessible and affordable for use in hospitals, larger and more diverse studies that capitalize on adolescents' interest in and aptitude for virtual reality, and on the full range of capabilities of this emerging technology, are needed to build on these promising results. Copyright © 2021 Journal of Medical Internet Research. All rights reserved.
Ridout B; Kelson J; Campbell A; Steinbeck K
Journal of Medical Internet Research
2021
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<a href="http://doi.org/10.2196/24967" target="_blank" rel="noreferrer noopener">10.2196/24967</a>
Current Grief Support in Pediatric Palliative Care
bereavement; death; grief; hospice; hospital; palliative; pediatric; programing; support; thanatology
Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1) anticipatory grief: the nondeath losses that occur with a complex and chronic illness, as well as the time leading up to death; (2) grief around the time of death: the intense and sacred experience of companioning with a dying child; (3) grief after death: supporting bereavement and mourning through programing and other methods; (4) innovative approaches: the future of grief support. The contents of this article are meant to support and educate programs currently providing grief services and those aiming to begin the meaningful work of grief support.
Schuelke T; Crawford C; Kentor R; Eppelheimer H; Chipriano C; Springmeyer K; Shukraft A; Hill M
Children
2021
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<a href="http://doi.org/10.3390/children8040278" target="_blank" rel="noreferrer noopener">10.3390/children8040278</a>
Impact of Home-Based Pediatric Palliative Care on Hospital and Emergency Department Utilization at a Single Institution
ED utilization; Emergency department; Home-based care; Hospital; Hospital utilization; Pediatric palliative care
Background: There is limited data on home-based pediatric palliative care (PPC) demographics and utilization outcomes. Objective(s): Describe who receives home-based PPC and compare emergency department visits, hospital admissions, and hospital days admitted in the one year before and after initiation of home-based PPC. Design(s): Exploratory retrospective medical chart review. Settings/Subjects: Patients, from birth to their 21st birthday, who received home-based PPC during January 1, 2015 to July 31, 2016 at a single site. Measurements: Demographics and hospital utilization were extracted from the medical chart. Result(s): N = 154. Comparing one year before and after initiation of home-based PPC, the median number of hospitalizations decreased from 2 to 1 (p < 0.001), and the median total number of hospital days admitted decreased from 16 to 4 days (p < 0.001). Conclusion(s): Children enrolled in a home-based PPC program experienced a significant decrease in the number of hospital admissions and hospital days admitted. © Copyright 2022, Mary Ann Liebert, Inc., publishers 2022.
Bower KA; Lau M; Short R; Lawrence S; Beauchamp-Walters J; Marc-Aurele K
Journal of Palliative Medicine
2022
<a href="http://doi.org/10.1089/jpm.2021.0307" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0307</a>
Clinical spectrum of children receiving palliative care in Malaysian Hospitals
Child Care;hospital;malaysia;palliative Therapy; Acute Lymphoblastic Leukemia; Adolescent; Adult; Bereavement; Caregiver; Cerebral Palsy; Child; Chromosome; Chromosome Aberration; Clinical Trial; Congenital Malformation; Controlled Clinical Trial; Controlled Study; Cross Sectional Study; Diagnosis; Duchenne Muscular Dystrophy; Education; Female; Follow Up; Hospital Admission; Human; Icd-10; Infant; Major Clinical Study; Malaysia; Male; Malignant Neoplasm; Multicenter Study; Needs Assessment; Newborn; Observational Study; Patient Referral; Pediatrician; Prognosis; Review; Spinal Muscular Atrophy
Introduction: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. Methods: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out. Results: There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be 'Congenital malformations, deformations and chromosomal abnormalities' 117 (37.1%), 'Diseases of nervous system' 76 (24.1%) and 'Neoplasms' 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with 'Diseases of nervous system' were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients. Conclusion: Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative. Copyright © 2017, Malaysian Medical Association. All rights reserved.
Chong LA; Khalid F; Khoo TB; Teh SH; Kuan GL; Abdul Manaf AM; Alias E; Chieng CH; Razali H; Ong GB; Hedra ZS; Abdul Shukor INC; Wang JJ
Medical Journal Of Malaysia
2017
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/28255137" target="_blank" rel="noreferrer">28255137</a>
Exploring communication difficulties in pediatric hematology: oncology nurses
Child; Female; Humans; Male; Neoplasms; Terminal Care; Adult; Attitude of Health Personnel; Prognosis; Follow-Up Studies; Oncology Nursing; Communication Barriers; Qualitative Research; Pediatric Nursing; Nurse-Patient Relations; Hospitals; Hematology; Turkey; Nursing Staff; Pediatric; Hospital
BACKGROUND: Communication plays an important role for the well being of patients, families and also health care professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety, hopelessness and decreased of quality life for patients, families and also nurses. OBJECTIVE: This study aimed to explore communication difficulties of pediatric hematology/oncology nurses with patients and their families, as well as their suggestions about communication difficulties. MATERIALS AND METHODS: It was conducted in a pediatric hematology/oncology hospital in Ankara, Turkey. Qualitative data were collected by focus groups, with 21 pediatric hematology/oncology nursing staff from three groups. Content analysis was used for data analysis. RESULTS: Findings were grouped in three main categories. The first category concerned communication difficulties, assessing problems in responding to questions, ineffective communication and conflicts with the patient's families. The second was about the effects of communication difficulties on nurses and the last main category involved suggestions for empowering nurses with communication difficulties, the theme being related to institutional issues. CONCLUSIONS: Nurses experience communication difficulties with children and their families during long hospital stays. Communication difficulties particularly increase during crisis periods, like at the time of first diagnosis, relapse, the terminal stage or on days with special meaning such as holidays. The results obtained indicate that pediatric nurses and the child/family need to be supported, especially during crisis periods. Feeling of empowerment in communication will improve the quality of care by reducing the feelings of exhaustion and incompetence in nurses.
2013
Citak EA; Toruner Ebru Kilicarslan; Gunes NB
Asian Pacific Journal Of Cancer Prevention
2013
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Journal Article
<a href="http://doi.org/10.7314/apjcp.2013.14.9.5477" target="_blank" rel="noreferrer">10.7314/apjcp.2013.14.9.5477</a>
Adverse childhood experiences and lifetime suicide ideation: a cross-sectional study in a non-psychiatric hospital setting
Child; Cross-Sectional Studies; Female; Humans; Male; Adult; Hospitals; Ireland; Emergency Service; adolescent; Non-U.S. Gov't; Research Support; Psychological; PedPal Lit; Hospital; Interview; General; Child Abuse/prevention & control/psychology; Suicide/prevention & control/psychology
We have assessed the effect of adverse childhood experiences on the lifetime prevalence of suicide ideation in a cross-sectional study involving 182 patients aged 18 to 44 years, consecutive attenders at an A&E review clinic. All participants were interviewed by a psychologist using standardised questionnaire instruments addressing participants' demographic characteristics, drug use, depressed mood, eight major categories of adverse childhood experiences (including physical, emotional and sexual abuse) and suicide ideation. The response rate was 73%. In multivariate logistic regression analyses, those with a history of two or more forms of childhood adversity relative to those with none were at increased risk of depressed mood (OR = 5.5, 95% CI = 2.3-13.3) and suicide ideation (OR = 3.5, 95% CI = 1.5-8.3). The findings emphasise the need to set suicide prevention within the broader context of society's obligation to protect children from physical, emotional and sexual abuse.
2006
Corcoran P; Gallagher J; Keeley HS; Arensman E; Perry IJ
Irish Medical Journal
2006
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Journal Article
Transitional medicine: will emergency medicine physicians be ready for the growing population of adults with congenital heart disease?
Cross-Sectional Studies; Humans; Adult; Education; Internship and Residency; Educational Measurement; Survivors; Medical; Emergency Service; Adolescent Transitions; Graduate; Heart Defects; Hospital; Congenital/therapy; Emergency Medicine/education
BACKGROUND: Currently, approximately 85% of children with significant congenital heart problems survive to adolescence and adulthood. This survival rate represents a dramatic improvement in the medical and surgical care of congenital heart disease (CHD) during the last 35 years. Nevertheless, these patients remain at increased risk for significant cardiac problems long after primary interventions are completed. They are more likely than the general population to seek urgent medical care, often in an emergency department setting. They represent a new and growing population of emergency department patients with a specialized set of problems not traditionally part of the training for emergency medicine (EM) physicians. OBJECTIVE: We investigated the current scope and status of training for EM physicians in the immediate management of CHD patients as they grow to adolescence and adulthood. METHODS: We conducted 2 cross-sectional surveys to assess the current training environment for 2 specific groups: (1) US general EM (GEM) residency programs, and (2) US and Canadian pediatric EM (PEM) fellowship programs. Surveys were mailed to program directors during the summer of 2005. A total of 198 surveys were sent out: 134 to GEM residency directors and 64 to PEM fellowship directors. RESULTS: The response rate overall was 68%, with a 64% response rate from the GEM residency directors and 77% from the PEM fellowship directors. Across all programs, 43% (56/130 respondents) were "unsure" about the existence or location of an adult CHD (ACHD) clinic in their area. When asked to rate the importance of ACHD as a training topic, 40 (85%) of 47 PEM fellowship directors and 62 (74%) of 84 GEM residency directors ranked it as "low priority" or "unnecessary." However, 70 (55%) of 127 respondents were "unsure," "uncomfortable," or "worried" about the ACHD training their trainees receive (PEM, 59%; GEM, 53%). In addition, most program directors (75%) estimated that their trainees care for 5 or fewer ACHD patients annually. CONCLUSIONS: There seems to be a mismatch between the growing need for ACHD emergency care and the current state of this topic in both GEM residency and PEM fellowship training programs.
2006
Cross KP; Santucci KA
Pediatric Emergency Care
2006
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Journal Article
<a href="http://doi.org/10.1097/01.pec.0000245178.13418.4f" target="_blank" rel="noreferrer">10.1097/01.pec.0000245178.13418.4f</a>
Bereavement support for families following the death of a child from cancer: experience of bereaved parents
Child; Humans; Intensive Care Units; bereavement; Death; Neoplasms; Parents; Siblings; Professional-Family Relations; Death; social support; Pediatric; bereavement; Parents/psychology; Neoplasms; social support; sibling bereavement; Hospital; SSHRC CURA; Personnel; Siblings/psychology
This study explored the experiences and needs of nine parents who had received hospital-based bereavement support following the death of their child from cancer, in Western Australia. Six prominent themes emerged from thematic data analysis: personal grief, personal coping, concern for siblings of the deceased child, hospital bereavement support, community supports and unmet needs. Parents identified the need for more supportive contact from hospital staff during the palliative phase and following the child's death, early provision of information on how to practically and emotionally prepare for the death of their child, contact with other bereaved parents, and formal grief support for siblings. Areas for future research include exploration of parents' wish to become involved in activities to help others, bereavement support for siblings, the level of contact with the hospital unit that may be therapeutically beneficial, and parental behaviors associated with accessing both hospital and community-based bereavement supports.
2006
deCinque N; Monterosso L; Dadd G; Sidhu R; Macpherson R; Aoun S
Journal Of Psychosocial Oncology
2006
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Journal Article
<a href="http://doi.org/10.1300/J077v24n02_05" target="_blank" rel="noreferrer">10.1300/J077v24n02_05</a>
End Of Life Care In Paediatric Neurodegenerative Disease: A Regional Experience
Degenerative Disease; Terminal Care; Case Study; Child; Clinical Article; Controlled Study; England; Family; Hospital; Human; Myoclonus; Neurodegenerative Diseases; Neurology; Only Child; Palliative Care; Palliative Therapy; Personal Experience; Rare Disease; Seizure; Social Welfare; Symptom; Terminal Care
Objectives: To identify barriers to delivering patient and family centred end of life care to children with neurodegenerative disease, of which seizures and myoclonic epilepsy is a significant symptom. To highlight good practice in delivery of end of life care to this patient population. To highlight the unique and specific challenges of end of life care in neurodegenerative disease. Introduction: New Children and Young Persons Advanced Care Planning Guidance has been introduced in 2015. The aim is to improve collaborative working between health care services for children and to create a clear, safe and effective platform from which to provide palliative care. In view of this, consideration has been given to the experience of children and families with neurodegenerative disease in different parts of the Northwest of England. These children, like many other cohorts of children with rare or chronic disease, have unique and specific needs. Methods: This case-series describes the end of life care provided to families in different regions of the Northwest. Case notes of six patients who died between 2013 and 2015 and who received input from the Paediatric Neurology Department at Royal Manchester Children's Hospital, were reviewed. All patients had a neurodegenerative disease with seizure or myoclonus as a significant symptom. Case notes were reviewed systematically with use of a developed proforma. Results: The review showed the most effective end of life care varied by geographical region likely reflecting provision of community services. Those patients with access to dedicated and engaged community and tertiary centre teams who worked in collaboration had the most effective end of life experience. Conclusions: Children with neurodegenerative disease do have unique and specific end of life needs, however, fundamental to effective end of life care is a care multi-agency cohesive and accessible team.
Donald A; Kauffmann L; Ram D; Vassallo G
Developmental Medicine And Child Neurology
2016
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The decision to use topical anesthetic for intravenous insertion in the pediatric emergency department
Child; Female; Humans; Male; Pennsylvania; Clinical Competence; Sensitivity and Specificity; Clinical Protocols; Anesthetics; Preschool; PedPal Lit; Comparative Study; Administration; Infusions; Hospital; Nursing Assessment/methods; Topical; Emergency Service; Pain/drug therapy/etiology; Emergency Nursing/methods/standards; Intravenous/adverse effects/nursing; Local/administration & dosage; Pediatric Nursing/methods; Triage/standards
OBJECTIVES: Topical anesthetic creams to reduce the pain of intravenous (IV) placement may be more effectively used in the emergency setting if they are applied by nurses in the triage area of the emergency department or soon after the patient is placed into a room. This strategy requires accurate prediction of which patients will require IV placement. The objective of this study was to compare triage nurse judgment regarding IV placement in pediatric patients with a triage prediction rule using chief complaint, referral status, and high-risk medical history. A secondary objective was to evaluate whether the presence of the anesthetic cream placed in triage influenced the subsequent decision to place an IV and thus invalidate the prediction strategy. METHODS: Triage nurses were randomly assigned to a prediction score group (PRD), classifying patients as "IV likely" if the prediction score was > or =2, or an "own judgment" (RN JDGMT) group, classifying any patient that he or she considered to have a > or =50% risk of receiving an IV. The rate of actual IV placement in the emergency department treatment rooms was compared between the triage prediction strategies. To assess the influence of the presence of lidocaine 2.5% and prilocaine 2.5% (EMLA cream) on the judgment to place an IV, only 75% of the "IV likely" patients had EMLA applied in triage; the IV placement rate was compared between "IV likely" patients who did or did not have EMLA applied. RESULTS: The authors enrolled 3,790 of 5,025 (75.4%) of eligible patients. The RN JDGMT group predicted 165 of 250 (66%; 95% confidence interval = 59% to 72%) of IVs placed, compared with 127 of 305 (41%; 95% CI = 36% to 47%) in the PRD group (p < 0.0001). Positive predictive values were 59% and 53% for the RN JDGMNT and PRD groups, respectively. There was no difference in IV placement rates in the "IV likely" patients who did and did not have EMLA applied. CONCLUSIONS: Triage nurse judgment to predict eventual IV placement had greater sensitivity and similar predictive value compared with a prediction model based on medical history and chief complaint. The triage placement of topical anesthetic in pediatric patients did not change the eventual rate of IV placement.
2006
Fein JA; Gorelick MH
Academic Emergency Medicine
2006
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Journal Article
Distance from home when death occurs: a population-based study of Washington State, 1989-2002
Child; Humans; infant; Palliative Care; Terminal Care; Adult; Hospital Mortality; Aged; Middle Aged; Health Services Accessibility; Death; Residence Characteristics; Hospitals; Washington; Nursing Homes; Emergency Service; adolescent; Preschool; infant; Newborn; location of death; Hospital
OBJECTIVE: For patients who die in hospitals, the regionalization of tertiary health care services may be increasing the home-to-hospital distance, particularly for younger patients whose care is especially regionalized and for whom access to and use of home hospice services remains limited. The objective of this study was to test the hypotheses that the distance from home at the time of death in a hospital has increased over time and is inversely related to the age of the dying patient. METHODS: A population-based case series was conducted in Washington State of all deaths of state residents from 1989 to 2002. The main outcome measure was driving distance between home residence and location at the time of death. RESULTS: The overall mean distance from home to the hospital where death occurred has increased by 1% annually. Children who died in hospitals were much farther from home than their adult counterparts: the mean distance was 37.4 km for neonates and 50.9 km for children who were aged 1 to 9 years, compared with 19.9 km for adults who were aged 60 to 79 years and 14.0 km for patients who were older than 79 years. Disparities of distance were even greater among patients who were at the 90th percentile for distance (85.6 km for neonates compared with 30.8 for patient who were older than 79 years). CONCLUSIONS: The distance between home residence and the hospital where death occurs is greatest for children and has increased over time. Both of these findings have implications for the design of local and regional pediatric end-of-life supportive care services.
2006
Feudtner C; Silveira MJ; Shabbout M; Hoskins RE
Pediatrics
2006
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Journal Article
<a href="http://doi.org/10.1542/peds.2005-2078" target="_blank" rel="noreferrer">10.1542/peds.2005-2078</a>
Discussing Serious News
Education; Interpersonal Communication; Procedures; Psychology; Adult; Bereavement; Doctor Patient Relation; Emotion; Empathy; Female; Hospital; Human; Male; Medical Education; Palliative Therapy; Parent; Pediatrics
AIM: The ability to communicate serious news to patients and families in a caring and compassionate way is a critical skill for physicians. This study explores the impact of a novel communication skills workshop that included bereaved parents in role play on pediatric residents' confidence to communicate serious news. METHODS: Following the workshop, pediatric residents were surveyed to assess their perceived efficacy of the educational intervention. The survey included anchored response and open-ended questions to yield qualitative and quantitative results. RESULTS: After completing the workshop, residents' confidence in discussing goals, managing emotions, and expressing empathy all increased significantly. Residents reported that the inclusion of bereaved parents was beneficial since it made the experience more realistic. In addition, they believed their ability to communicate with patients and families had improved. CONCLUSIONS: Including bereaved parents in this communication skills workshop improved the residents' confidence in discussing serious topics and enhanced the reality of the experience.
Flint H; Meyer M; Hossain M; Klein M
The American Journal Of Hospice & Palliative Care
2017
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<a></a> <a href="http://doi.org/10.1177/1049909115617140" target="_blank" rel="noreferrer">10.1177/1049909115617140</a>
Self-administration of intravenous analgesics
Equipment and Supplies; Injections; Hospital; Analgesics/administration & dosage; Intravenous/instrumentation; Self Medication/instrumentation
1970
Forrest WH; Smethurst PW; Kienitz ME
Anesthesiology
1970
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Journal Article
<a href="http://doi.org/10.1097/00000542-197009000-00023" target="_blank" rel="noreferrer">10.1097/00000542-197009000-00023</a>
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
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<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000547</a>
Clinical practice guideline for emergency department ketamine dissociative sedation in children
Child; Humans; Age Factors; Anesthetics; Emergency Service; Preschool; infant; Hospital; Emergency Medicine/methods; Pediatrics/methods; Dissociative/administration & dosage/contraindications; Ketamine/administration & dosage/contraindications
We present an evidence-based clinical practice guideline for the administration of the dissociative agent ketamine for emergency department pediatric procedural sedation and analgesia. Substantial research in recent years has necessitated updates and revisions to the widely disseminated 1990 recommendations. We critically discuss indications, contraindications, personnel requirements, monitoring, dosing, coadministered medications, recovery issues, and future research questions for dissociative sedation.
2004
Green SM; Krauss B
Annals Of Emergency Medicine
2004
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Journal Article
<a href="http://doi.org/10.1016/S0196064404006365" target="_blank" rel="noreferrer">10.1016/S0196064404006365</a>
Role of systemic steroids in acute preschool wheeze
Child; Humans; Acute Disease; Randomized Controlled Trials as Topic; Emergency Service; Preschool; infant; Hospital; Glucocorticoids/pharmacology; Respiratory Sounds/drug effects
2010
Grigg J
Archives Of Disease In Childhood
2010
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).
Journal Article
<a href="http://doi.org/10.1136/adc.2009.160994" target="_blank" rel="noreferrer">10.1136/adc.2009.160994</a>
Evaluation of patient-care protocol use by various providers
Humans; Medical Staff; Medical Audit; Cooperative Behavior; Patient Care Planning; Medical History Taking; Hospitals; Nurse Practitioners; Teaching; Medical; Nursing Staff; RDF Project; Hospital; Fees; General; Laboratory Techniques and Procedures; North Carolina; Personnel; Pharyngitis/diagnosis/therapy; Physician Assistants/education
1975
Grimm R; Shimoni K; Harlan W; Estes E
New England Journal Of Medicine
1975
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).
Journal Article
<a href="http://doi.org/10.1056/nejm197503062921005" target="_blank" rel="noreferrer">10.1056/nejm197503062921005</a>
Management of acute asthma in adults in the emergency department: nonventilatory management
Female; Humans; Pregnancy; Adult; Risk Factors; Acute Disease; Oxygen Inhalation Therapy; Patient Admission; Emergency Service; decision making; Radiography; Thoracic; Hospital; Blood Gas Analysis; Oxygen/blood; Airway Obstruction/diagnosis; Forced Expiratory Volume; Recurrence/prevention & control; Adrenal Cortex Hormones/therapeutic use; Asthma/diagnosis/therapy; Bronchodilator Agents/therapeutic use; Magnesium Sulfate/therapeutic use; Oximetry; Peak Expiratory Flow Rate
2010
Hodder R; Lougheed MD; Rowe BH; FitzGerald JM; Kaplan AG; McIvor RA
Canadian Medical Association Journal
2010
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).
Journal Article
<a href="http://doi.org/10.1503/cmaj.080072" target="_blank" rel="noreferrer">10.1503/cmaj.080072</a>
Children And Young Person Advanced Care Plans In District General Hospitals-who Gets Them?
Female; Hospital; Male; Awareness; Child; Clinical Article; Community Health Nursing; Data Base; Death; Documentation; Human; Palliative Therapy; Resuscitation; Validity
Aims An audit of children and young person's advanced care plans (ACPs) in two district general hospitals (centres A and B) against NICE guidance [1]. Methods Centre A: consultants were emailed to identify the population with ACPs. Centre B: two consultants who write ACPs were approached for their patient lists, and the rest of the consultant body was emailed. Patient lists from both centres were cross-referenced with the community nursing teams and paediatric A and E. Each ACP was reviewed to check validity, resuscitation plan, wishes during life and death, review date and distribution to members of the multidisciplinary team (MDT). Results 12 children were identified in centre A, and 31 children in centre B. The majority of ACPs were for ACT category 4 [2] (80% of ACPs in centre A, 69% in centre B). 80% of patients across both centres had demographic details and a resuscitation plan clearly documented. Wishes for life were documented in 50% of cases in centre A and 73% of cases in centre B. Distribution was variable and data was not available for some cases. Paediatric A and E was the most reliable place to find ACPs (80% in both centres) and GPs the least (only 50% of all patients where data was available). Conclusions Centre B, where there are two dedicated palliative care doctors, had a higher number of ACPs. Centre B had improved documentation, including 'flagging' patients on the hospital IT system. Despite this, distribution of ACPs to members of the MDTwas not improved. Both centres are developing ACP databases to contain a record of all patients with ACPs in one place, which will highlight review dates and distribution to the MDT. Resuscitation plans and demographics were clearly documented, and there is a move towards documenting 'wishes for life' at both centres. With greater awareness of paediatric palliative care needs and an increase in the paediatric population with life-limiting conditions, the importance of ACPs cannot be underestimated. With this, dedicated ACP co-ordinators may be required to improve distribution and review. Consideration of electronic formats held by parents may improve access to up-todate copies of ACPs.
Holland C; Nohavicka L; Aspel J; Hughes S
Archives Of Disease In Childhood
2017
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10.1136/archdischild-2017-313087.516
The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan
Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; referral and consultation; Adult; Attitude of Health Personnel; Education; Medical Staff; Withholding Treatment; Questionnaires; Middle Aged; Attitude to Death; Resuscitation Orders; Self Report; Neonatology; Medical; Neonatal; Nursing Staff; Newborn; Clinical; Ethics Committees; Taiwan; Hospital; continuing
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of 'DNR' to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed.
2013-06
Huang L-C; Chen CH; Liu Hsin-Li; Lee Ho-Yu; Peng Niang-Huei; Wang Teh-Ming; Chang YC
Journal Of Medical Ethics
2013
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Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100428" target="_blank" rel="noreferrer">10.1136/medethics-2011-100428</a>
A qualitative study of health care professionals’ views and experiences of paediatric advance care planning
Adolescence; Advance Care Planning; Attitude of Health Personnel; Child; Community -- England; Conversation; Death; Documentation; England; Family Attitudes; Hospices -- England; Hospital; Hospitals; Human; Infant; Medical Staff; Multidisciplinary Care Team; Newborn; Palliative Care; Pediatric Care -- Psychosocial Factors; Preschool; Qualitative Studies; Semi-Structured Interview; Terminal Care; Thematic Analysis; Time Factors
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.
Jack BA; Mitchell TK; O'Brien MR; Silverio SA; Knighting K
BMC Palliative Care
2018
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<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0347-8</a>
A Prospective Study On The Characteristics And Subjects Of Pediatric Palliative Care Case Management Provided By A Hospital Based Palliative Care Team
Case Management; Hospital; Palliative Therapy; Prospective Study; Child; Clergy; Controlled Study; Human; Major Clinical Study; Nurse; Psychologist; Questionnaire; Social Worker
Background: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD). Methods: A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents. Results: Four hundred fifty-five contacts took place with parents of 70 patients (27MD, 43NMD). Sixty-two percent of all contacts were with the specialized nurse. The child life specialists, psychologist and social worker were also regularly consulted, the chaplain was not consulted. Ninety-five percent of all contacts took place between 8 am and 6 pm during weekdays, a limited number between 6 pm and 9 pm. Twenty-five percent of all contacts were proactively initiated by the PPCT, 25 % were initiated by parents. In these care characteristics, no differences were seen for MD and NMD patients. Psychosocial topics were addressed most frequently. MD patients consulted the PPCT more often about school and NMD patients about socio-economic issues. Conclusions: All different disciplines of the PPCT were regularly consulted, except for the chaplain. With an easy accessible team with a highly pro-active approach, availability from 8 am to 9 pm seems sufficient to accommodate patient's and parent's needs. More anticipation seems required for socio-economic topics. This insight in pediatric palliative case management can provide guidance in the development of a new PPCT. Copyright © 2016 The Author(s).
Jagt Van Kampen CT; Kars MC; Colenbrander DA; Bosman DK; Grootenhuis MA; Caron HN; Schouten-Van Meeteren AYN
Bmc Palliative Care
2017
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10.1186/s12904-016-0166-8
End-of-Life Care for Hospitalized Children
Child; Hospital; end-of-life care
High-quality palliative care is the standard for children with life-threatening illness, especially when a cure is not possible. This review outlines a model for clinical practice that integrates clinical, psychosocial, and ethical concerns at the end of life (EOL) into a standard operating procedure specifically focused on inpatient deaths. Palliative care for children at EOL in the hospital setting should encompass the personal, cultural, and spiritual needs of the child and family members and aim to minimize suffering and increase support for all who are involved, including hospital staff.
2014-08
Johnson L-M; Snaman JM; Cupit MC; Baker JN
Pediatric Clinics Of North America
2014
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Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.04.012" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.012</a>
Reviewing audit: barriers and facilitating factors for effective clinical audit
Physician-Patient Relations; Great Britain; Medical Staff; Leadership; Physician's Role; Interprofessional Relations; Patient Satisfaction; Quality of Health Care; Job Satisfaction; Hospitals; MEDLINE; Family Practice; Primary Health Care; Non-U.S. Gov't; Comparative Study; Evaluation Studies; retrospective studies; Databases; Hospital; Support; General; Attitude of Health Personnel; Nursing Audit; Bibliographic; Medical Audit/standards; Medical Records/standards; Partnership Practice
OBJECTIVE: To review the literature on the benefits and disadvantages of clinical and medical audit, and to assess the main facilitators and barriers to conducting the audit process. DESIGN: A comprehensive literature review was undertaken through a thorough review of Medline and CINAHL databases using the keywords of "audit", "audit of audits", and "evaluation of audits" and a handsearch of the indexes of relevant journals for key papers. RESULTS: Findings from 93 publications were reviewed. These ranged from single case studies of individual audit projects through retrospective reviews of departmental audit programmes to studies of interface projects between primary and secondary care. The studies reviewed incorporated the experiences of a wide variety of clinicians, from medical consultants to professionals allied to medicine and from those involved in unidisciplinary and multidisciplinary ventures. Perceived benefits of audit included improved communication among colleagues and other professional groups, improved patient care, increased professional satisfaction, and better administration. Some disadvantages of audit were perceived as diminished clinical ownership, fear of litigation, hierarchical and territorial suspicions, and professional isolation. The main barriers to clinical audit can be classified under five main headings. These are lack of resources, lack of expertise or advice in project design and analysis, problems between groups and group members, lack of an overall plan for audit, and organisational impediments. Key facilitating factors to audit were also identified: they included modern medical records systems, effective training, dedicated staff, protected time, structured programmes, and a shared dialogue between purchasers and providers. CONCLUSIONS: Clinical audit can be a valuable assistance to any programme which aims to improve the quality of health care and its delivery. Yet without a coherent strategy aimed at nurturing effective audits, valuable opportunities will be lost. Paying careful attention to the professional attitudes highlighted in this review may help audit to deliver on some of its promise.
2000
Johnston G; Crombie IK; Davies HT; Alder EM; Millard A
Quality In Health Care
2000
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Journal Article
Prevalence of Children With Medical Complexity and Associations With Health Care Utilization and In-Hospital Mortality
Children; Health care utilization; Hospital; Medical complexity; Mortality
IMPORTANCE: Children with medical complexity (CMC) have substantial health care needs and frequently experience poor health care quality. Understanding the population prevalence and associated health care needs can inform clinical and public health initiatives. OBJECTIVE: To estimate the prevalence of CMC using open-source pediatric algorithms, evaluate performance of these algorithms in predicting health care utilization and in-hospital mortality, and identify associations between medical complexity as defined by these algorithms and clinical outcomes. DESIGN, SETTING, AND PARTICIPANTS: This retrospective cohort study used all-payer claims data from Colorado, Massachusetts, and New Hampshire from 2012 through 2017. Children and adolescents younger than 18 years residing in these states were included if they had 12 months or longer of enrollment in a participating health care plan. Analyses were conducted from March 12, 2021, to January 7, 2022. EXPOSURES: The pediatric Complex Chronic Condition Classification System, Pediatric Medical Complexity Algorithm, and Children With Disabilities Algorithm were applied to 3 years of data to identify children with complex and disabling conditions, first in their original form and then using more conservative criteria that required multiple health care claims or involvement of 3 or more body systems. MAIN OUTCOMES AND MEASURES: Primary outcomes, examined over 2 years, included in-hospital mortality and a composite measure of health care services, including specialized therapies, specialized medical equipment, and inpatient care. Outcomes were modeled using logistic regression. Model performance was evaluated using C statistics, sensitivity, and specificity. RESULTS: Of 1 936 957 children, 48.4% were female, 87.8% resided in urban core areas, and 45.1% had government-sponsored insurance as their only primary payer. Depending on the algorithm and coding criteria applied, 0.67% to 11.44% were identified as CMC. All 3 algorithms had adequate discriminative ability, sensitivity, and specificity to predict in-hospital mortality and composite health care services (C statistic = 0.76 [95% CI, 0.73-0.80] to 0.81 [95% CI, 0.78-0.84] for mortality and 0.77 [95% CI, 0.76-0.77] to 0.80 [95% CI, 0.79-0.80] for composite health care services). Across algorithms, CMC had significantly greater odds of mortality (adjusted odds ratio [aOR], 9.97; 95% CI, 7.70-12.89; to aOR, 69.35; 95% CI, 52.52-91.57) and composite health care services (aOR, 4.59; 95% CI, 4.44-4.73; to aOR, 18.87; 95% CI, 17.87-19.93) than children not identified as CMC. CONCLUSIONS AND RELEVANCE: In this study, open-source algorithms identified different cohorts of CMC in terms of prevalence and magnitude of risk, but all predicted increased health care utilization and in-hospital mortality. These results can inform research, programs, and policies for CMC.
Leyenaar JK; Schaefer AP; Freyleue SD; Austin AM; Simon TD; Van Cleave J; Moen EL; O'Malley AJ; Goodman DC
JAMA Pediatrics
2022
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<a href="http://doi.org/10.1001/jamapediatrics.2022.0687" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2022.0687</a>
Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death
Child; Humans; Intensive Care Units; Professional-Family Relations; Death; Hospitals; Pediatric; Non-U.S. Gov't; Research Support; bereavement; Parents/psychology; social support; Hospital; Personnel
OBJECTIVES: Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes, and attending memorial services. This study explores the significance of these acts for bereaved parents. METHODS: Twelve parents whose children died in the ICU of a tertiary care pediatric hospital were interviewed, to explore their experiences of the death. Investigators reviewed transcripts and observational field notes. Multidisciplinary team triangulation was used to corroborate themes, with cross-case analysis. RESULTS: Three themes emerged regarding parental experiences of staff members' acts, ie, (1) parents placed great importance on the hospital's memorial service and on staff members' presence at the service; (2) parents found it difficult to return to the hospital after the child's death but all attended the memorial service, finding some closure in the return; and (3) parents appreciated receiving cards and greatly valued staff members' efforts to telephone/visit and to attend the funeral. Months later, parents remembered positively which staff members engaged in which activities. Conversely, parents expressed disappointment when staff members did not engage in these activities and/or were absent from memorial/funeral services. CONCLUSIONS: Efforts to support families and to commemorate deceased children are appreciated by bereaved parents. Staff members' absences at commemorative events and a lack of supportive acts are noticed and regretted by families. Staff members and program administrators should attempt to arrange workloads to ensure meaningful contact between staff members and parents during the bereavement period.
2005
Macdonald ME; Liben S; Carnevale FA; Rennick J; Wolf SL; Meloche D; Cohen SR
Pediatrics
2005
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Journal Article
<a href="http://doi.org/10.1542/peds.2004-1980" target="_blank" rel="noreferrer">10.1542/peds.2004-1980</a>
Reasons for dissatisfaction: A survey of relatives of intensive care patients who died
Cross-Sectional Studies; Female; Humans; Male; Adult; Medical Staff; Questionnaires; Aged; Middle Aged; Professional-Family Relations; Communication; Death; Non-U.S. Gov't; Research Support; Family/psychology; cause of death; Age Distribution; Hospital; Switzerland; Consumer Satisfaction/statistics & numerical data; Terminal Care/psychology/standards; Intensive Care Units/standards
OBJECTIVE: To describe the reasons for eventual dissatisfaction among the families of patients who died in the intensive care unit (ICU), regarding both the assistance offered during the patient's stay in the hospital and the information received from the medical staff. DESIGN: Cross-sectional descriptive study, which was conducted after a survey using a questionnaire. SETTING: Interdisciplinary ICU (n = 8 beds) at San Giovanni Hospital in Bellinzona (CH). SUBJECTS: Three-hundred ninety families of patients who died in the ICU. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A postal questionnaire (n = 43 questions) was sent to the families of 390 patients who died in the ICU during 8 yrs (1981 to 1989). The results referred to 123 replies: a) 82.6% of the respondents expressed no criticism of the patient's hospital stay; b) 90% considered the patient's treatment was adequate; c) 17% felt that the information received concerning diagnosis was insufficient or unclear; and d) 30% (particularly close relatives and those relatives who were informed of the death by telephone and not in person) expressed dissatisfaction regarding the information received on the cause of death. CONCLUSIONS: Our survey found that the relatives of patients who died were most dissatisfied with the care received according to: a) the type of death (e.g., sudden death vs. death preceded by a gradual deterioration in the patient's condition); and b) the manner in which the relatives were notified of the death (in person vs. by telephone). The personal characteristics of the people interviewed, such as gender and the closeness of their relationship to the deceased, also seem to have some bearing on the opinions expressed. A high percentage of respondents were satisfied with the treatment received by their dying relative and the information conveyed by caregivers. Nevertheless, the dissatisfaction expressed by some respondents indicates a need for improvement, especially in communicating information to the relatives of these patients.
1998
Malacrida R; Bettelini CM; Degrate A; Martinez M; Badia F; Piazza J; Vizzardi N; Wullschleger R; Rapin CH
Critical Care Medicine
1998
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Journal Article
<a href="http://doi.org/10.1097/00003246-199807000-00018" target="_blank" rel="noreferrer">10.1097/00003246-199807000-00018</a>
Certainty and mortality prediction in critically ill children.
Child; Humans; Intensive Care Units; Medical Staff; Hospital Mortality; Prognosis; Prospective Studies; Clinical Competence; Longitudinal Studies; Risk Assessment; Pediatric; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; Hospital; Health Care and Public Health; Critical Illness/mortality
OBJECTIVES: The objective of this study is to investigate the relationship between a physician's subjective mortality prediction and the level of confidence with which that mortality prediction is made. DESIGN AND PARTICIPANTS: The study is a prospective cohort of patients less than 18 years of age admitted to a tertiary Paediatric Intensive Care Unit (ICU) at a University Children's Hospital with a minimum length of ICU stay of 10 h. Paediatric ICU attending physicians and fellows provided mortality risk predictions and the level of confidence associated with these predictions on consecutive patients at the time of multidisciplinary rounds within 24 hours of admission to the paediatric ICU. Median confidence levels were compared across different ranges of mortality risk predictions. RESULTS: Data were collected on 642 of 713 eligible patients (36 deaths, 5.6%). Mortality predictions greater than 5% and less than 95% were made with significantly less confidence than those predictions 95%. Experience was associated with greater confidence in prognostication. CONCLUSIONS: We conclude that a physician's subjective mortality prediction may be dependent on the level of confidence in the prognosis; that is, a physician less confident in his or her prognosis is more likely to state an intermediate survival prediction. Measuring the level of confidence associated with mortality risk predictions (or any prognostic assessment) may therefore be important because different levels of confidence may translate into differences in a physician's therapeutic plans and their assessment of the patient's future.
2004
Marcin JP; Pretzlaff RK; Pollack MM; Patel KM; Ruttimann UE
Journal Of Medical Ethics
2004
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Journal Article
<a href="http://doi.org/10.1136/jme.2002.001537" target="_blank" rel="noreferrer">10.1136/jme.2002.001537</a>
Surgical Intervention In Trisomy 18-supporting Pallative Care
Trisomy 18; Birth Weight; Clinical Article; Diagnosis; Female; Gastrointestinal Symptom; Heart; Hospital; Human; Infant; Intestine Obstruction; Male; Meningomyelocele; Palliative Therapy; Pathology; Pregnancy; Prognosis; Surgery; Tracheoesophageal Fistula
Aims Patients with Trisomy 18 have a poor prognosis-only 5%-10% of children survive beyond the first year; however various clinical features of Trisomy 18 such as gastrointestinal, cardiac and central nervous system anomalies may benefit from surgery. Providing intensive care including surgery must be carefully considered. We aimed to review surgical intervention in babies with Trisomy 18 and its outcome. Methods A retrospective case note review was undertaken of babies with a confirmed diagnosis of Trisomy 18 admitted to NICU over a 5 year period (01/09/2011 to 31/08/2016). Results 15 babies with Trisomy 18 were identified, 12 male and 3 female. Mean birth weight was 1.91 kg. Babies were born at a mean gestation of 39 weeks (range 31-41 weeks) (Tables 1, 2 and 3). Out of the 8 babies who had surgical pathology, 6 were stable enough to receive surgical intervention. 1 infant with a TOF/OA and 1 with complex cardiac problems were too unstable for surgery and died in hospital. Of the patients operated on, 1 baby died in theatre but the remainder were discharged home. Gastrointestinal problems were the main indications for surgery. 3 operations were undertaken for tracheo-oesophageal fistula, 2 for intestinal obstruction and 1 myelomeningocoele repair. Three of the 6 operations took place before a diagnosis of Trisomy 18 was confirmed. Conclusion Patients with Trisomy 18 who had surgical lesions that were amenable to intervention received surgery and had good short term outcomes with the majority of these patients discharged home. Surgery was performed both before and after the diagnosis of Trisomy 18 was confirmed, although it was suspected in all but one case. We therefore consider that a diagnosis of Trisomy 18 should not be a contraindication to surgical intervention. Our data shows that despite the poor long term prognosis of Trisomy 18, surgery should be considered to enable good quality palliative care, enable discharge home and improve the quality of a short life. (Table presented).
Masood Y; Spiers H; Cragie R; Edi-Osagie N
Archives Of Disease In Childhood
2017
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10.1136/archdischild-2017-313087.503
Defining mild, moderate, and severe pain by using the color analogue scale with children presenting to a pediatric emergency department
Child; Female; Humans; Male; Prospective Studies; adolescent; Preschool; Non-U.S. Gov't; Research Support; PedPal Lit; Hospital; Emergency Service; Wounds and Injuries/complications; Pediatrics/methods; Pain Measurement/methods; Abdominal Pain/classification/diagnosis; Arizona; Emergency Medicine/methods; Headache/classification/diagnosis; Pain/classification/diagnosis/etiology
OBJECTIVES: To define in centimeters what constitutes mild, moderate, and severe acute pain in children by using the Color Analogue Scale (CAS) for pain. METHODS: This was a prospective study, using convenience sampling, of all children presenting to a pediatric ED between the ages of 5 and 16 years with a complaint of pain. Children were excluded if they had altered sensorium, were clinically unstable or required admission to the ICU, or were developmentally delayed. Children were asked to mark their pain severity on the standardized 10-cm CAS. To use this measure, children were asked to slide the marker to the point on the scale that best described the pain they were currently experiencing. They then were asked to describe their pain as "none," "mild," "moderate," or "severe." RESULTS: A total of 169 children were enrolled with a mean age of 10.1 years (SD +/- 3.2 years). Males accounted for 94 (55%); 89 (52.7%) were Hispanic, 63 (37.3%) were white, 8 (4.7%) were African American, and 9 (5.3%) were "others." In children who considered their pain to be mild (n = 34), the median score was 3.5 cm, and the mean score was 3.47 cm (95% CI = 2.95 to 3.99). For those with moderate pain (n = 68), the median score was 6.0 cm, the mean score was 6.04 cm (95% CI = 5.67 to 6.41), and if the pain was considered severe (n = 67) the median score was 8.5 cm, and the mean score was 8.28 cm (95% CI = 7.85 to 8.71). CONCLUSIONS: This study quantifies what constitutes mild, moderate, and severe pain on the CAS scale. This information should be used to properly triage children with painful conditions and to identify appropriate patients for enrollment in analgesic studies.
2006
McConahay T; Bryson M; Bulloch B
Academic Emergency Medicine
2006
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Journal Article
Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers
hematopoietic stem cell transplantation; palliative therapy; advance care planning; article; bereavement counseling; bereavement support; cause of death; child; controlled study; descriptive research; ethics; female; Hematopoietic Stem Cells; home; hospice; hospital; human; in-hospital mortality; major clinical study; male; mortality; Palliative Care; patient referral; pediatric intensive care unit; place of death; relapse; retrospective study; spiritual care; Stem Cell Transplantation
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Mekelenkamp H; Schroder T; Trigoso E; Hutt D; Galimard JE; Kozijn A; Dalissier A; Gjergji M; Liptrott S; Kenyon M; Murray J; Corbacioglu S; Bader P
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/children8080615" target="_blank" rel="noreferrer noopener">10.3390/children8080615</a>
From Inpatient to Clinic to Home to Hospice and Back: Using the "Pop Up" Pediatric Palliative Model of Care
discharge; goals of care; hospice; hospital; inpatient; life-limiting; palliative; pediatric; Pop Up
Children and young people with life-limiting illnesses who need palliative care often have complex diverse medical conditions that may involve multiple hospital presentations, medical admissions, care, or transfer to other medical care facilities. In order to provide patients with holistic care in any location, palliative care clinicians need to carefully consider the ways to maintain continuity of care which enhances the child's quality of life. An emerging model of care known as "Pop Up" describes the approaches to supporting children and young people in any facility. A Pop Up is a specific intervention over and above the care that is provided to a child, young person and their family aimed at improving the confidence of local care providers to deliver ongoing care. This paper looks at some of the factors related to care transfer for pediatric palliative patients from one care facility to another, home and the impact of this on the family and medical care.
Mherekumombe MF
Children (Basel)
2018
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/children5050055" target="_blank" rel="noreferrer noopener">10.3390/children5050055</a>
Junior versus senior physicians for informing families of intensive care unit patients
Female; Humans; Male; Intensive Care Units; Adult; Critical Illness; Medical Staff; Prospective Studies; Aged; Middle Aged; Professional-Family Relations; Communication; Internship and Residency; Intensive Care; Comprehension; Family Health; Personal Satisfaction; ICU Decision Making; Hospital
To compare the effectiveness of information delivered to family members of critically ill patients by junior and senior physicians, we performed a prospective randomized multicenter trial in 11 French intensive care units. Patients (n = 220) were allocated at random to having their family members receive information by only junior or only senior physicians throughout the intensive care unit stay; there were 92 and 93 evaluable cases in the junior and senior groups, respectively, with no significant differences in baseline characteristics. Between Days 3 and 5, one family representative per patient was evaluated for comprehension of the diagnosis, prognosis, and treatment in the patient; satisfaction with information and care; and presence of symptoms of anxiety and depression. No significant differences were found between the two groups for any of these three criteria. Family members informed by a junior physician were more likely to feel they had not been given enough information time (additional time wanted: 3 [0-6.5] vs. 0 [0-5] minutes, p = 0.01) and to have sought additional explanations from their usual doctor (48.9 vs. 34.4%, p = 0.004). Specialty residents, if given opportunities for acquiring experience, can become proficient in communicating with families and share this task with senior physicians.
2004
Moreau D; Goldgran-Toledano D; Alberti C; Jourdain M; Adrie C; Annane D; Garrouste-Orgeas M; Lefrant JY; Papazian L; Quinio P; Pochard F; Azoulay E
American Journal Of Respiratory And Critical Care Medicine
2004
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).
Journal Article
<a href="http://doi.org/10.1164/rccm.200305-645OC" target="_blank" rel="noreferrer">10.1164/rccm.200305-645OC</a>
Supplementation with carnitine reduces the severity of constipation: A retrospective study of patients with severe motor and intellectual disabilities
cerebral palsy; enteric feeding; clinical trial; endogenous compound; sex difference; human tissue; intellectual impairment; school child; preschool child; gene expression; medical record review; human; article; child; female; male; controlled study; adult; clinical article; young adult; hospital; middle aged; disease severity; retrospective study; body mass; cholesterol/ec [Endogenous Compound]; infantile spasm; neuronal ceroid lipofuscinosis; clobazam/dt [Drug Therapy]; clonazepam/dt [Drug Therapy]; carnitine; carnitine deficiency/dt [Drug Therapy]; carnitine/dt [Drug Therapy]; constipation; constipation/dt [Drug Therapy]; constipation/pc [Prevention]; diet supplementation; motor dysfunction; 102767-28-2 (levetiracetam); 1069-66-5 (valproic acid); 1309-48-4 (magnesium oxide); 1317-74-4 (magnesium oxide); 14093-02-8 (iron); 14378-32-6 (zinc); 146-22-5 (nitrazepam); 1622-61-3 (clonazepam); 22316-47-8 (clobazam); 298-46-4 (carbamazepine); 461-06-3 (carnitine); 50-06-6 (phenobarbital); 53858-86-9 (iron); 541-15-1 (carnitine); 56-99-5 (carnitine); 57-30-7 (phenobarbital); 57-88-5 (cholesterol); 59-30-3 (folic acid); 6484-89-5 (folic acid); 68291-97-4 (zonisamide); 7439-89-6 (iron); 7440-66-6 (zinc); 7782-49-2 (selenium); 8028-68-0 (phenobarbital); 8047-84-5 (carbamazepine); 84057-84-1 (lamotrigine); 99-66-1 (valproic acid); acute brain disease; albumin; albumin blood level; anticonvulsant therapy; bacterial meningitis; bed rest; brain infarction; carbamazepine/dt [Drug Therapy]; carnitine deficiency; carnitine deficiency/dt [Drug Therapy]; cholesterol blood level; constipation/dt [Drug Therapy]; copper blood level; cupric ion/ec [Endogenous Compound]; enema/dt [Drug Therapy]; epilepsy/dt [Drug Therapy]; folic acid; folic acid blood level; folic acid/ec [Endogenous Compound]; groups by age; iron blood level; iron/ec [Endogenous Compound]; lamotrigine/dt [Drug Therapy]; levetiracetam/dt [Drug Therapy]; magnesium oxide/dt [Drug Therapy]; nitrazepam/dt [Drug Therapy]; Pelizaeus Merzbacher disease; periventricular leukomalacia; phenobarbital/dt [Drug Therapy]; prealbumin; prealbumin/ec [Endogenous Compound]; selenium blood level; selenium/ec [Endogenous Compound]; trace element; tuberous sclerosis; valproic acid; valproic acid/dt [Drug Therapy]; zinc/ec [Endogenous Compound]; zonisamide/dt [Drug Therapy]; constipation; NCL3; Pelizaeus- Merzbacher disease; tuberous sclerosis; West syndrome; pharmacologic intervention; Carnitine
Carnitine is an essential nutrient for the mitochondrial transport of fatty acids. Carnitine deficiency causes a variety of symptoms in multiple organs. Patients with severe motor and intellectual disabilities often have carnitine deficiency. This study aimed to determine the correlation between constipation and carnitine deficiency in them. Patients with severe motor and intellectual disabilities at our hospital were retrospectively reviewed. The correlation between level of free carnitine and severity of constipation was examined. Constipation and non-constipation groups were compared for age; sex; body mass index; bed rest period; use of anti-epileptic drugs, valproate sodium, or enteral nutrition; and serum levels of albumin, pre-albumin, totalcholesterol, free carnitine, folic acid, and trace elements. Moreover, severity of constipation before and after carnitine supplementation was assessed. Twenty-seven patients were enrolled. Of these, 14 were assigned to the constipation group and 13 to the non-constipation group. The free carnitine level was significantly correlated with severity of constipation (R = 0.7604, p<0.01). Free carnitine was significantly lower in the constipation compared with the non-constipation group (p<0.01). No other significant differences between the groups were found. The severity of constipation was significantly relieved after carnitine supplementation (p<0.001). In conclusion, carnitine supplementation could reduce the severity of constipation. Copyright © 2017 JCBN.
Murata S; Inoue K; Aomatsu T; Yoden A; Tamai H
Journal of Clinical Biochemistry and Nutrition
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/10.3164/jcbn.16-52" target="_blank" rel="noreferrer noopener">10.3164/jcbn.16-52</a>
Work, knowledge and argument in specialist consultations: incorporating tacit knowledge into system design and development
Humans; Medical Staff; Communication; Interprofessional Relations; Non-U.S. Gov't; Research Support; Clinical; Hospital; Pathology; Surgery
To understand how video telephone technology could support consultations between pathologists and surgeons, this study looked at what constitutes 'work' in clinical consultations. Using several methods (participant observation, video and interviews), we found pathologists and surgeons both share and do not share similar understandings of what a consultation is, what one should achieve in a consultation, and what in fact constitutes a 'successful' consultation. Furthermore, the same objects of consultation (the products of 'offstage' work) can be used and defined quite differently depending on how a consultation is framed. Differences and disjunctions like these have to be better understood if computer-supported cooperative healthcare work (CSCHW) applications are to be adopted and accepted.
1993
Nyce JM; Timpka T
Medical & Biological Engineering & Computing
1993
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).
Journal Article
<a href="http://doi.org/10.1007/bf02446887" target="_blank" rel="noreferrer">10.1007/bf02446887</a>
Home or hospital as the place of end-of-life care and death: A grounded theory study of parents' decision-making
hospital; home care; end-of-life; Decision-making; place of death; grounded theory
BACKGROUND: While several studies have examined 'what' families want with regard to the place of a child's end-of-life care and death, few have explored 'how' parents reach a decision. AIMS: (1) to develop a model explaining how parents of a child with a life-threatening illness in Greece decide about the place of end-of-life care and death; (2) to identify the factors affecting decision-making; (3) to consider the implications for clinical practice. DESIGN: Grounded theory study of bereaved parents using semi-structured open-ended interviews following Strauss and Corbin's principles of data collection and analysis. SETTING/PARTICIPANTS: Semi-structured interviews with 36 bereaved parents of 22 children who died at home (n = 9) or in a paediatric hospital (n = 13) in Athens, Greece. RESULTS: (1) Decisions regarding place of care and death were reached in one of four ways: consensus, accommodation, imposition of professional decisions on parents or imposition of parents' decisions without including professionals. (2) Six factors were identified as affecting decisions: awareness of dying, perceived parental caregiving competence, perceived professional competence, parents' view of symptom management, timing of decision-making, and being a 'good parent'. (3) Decisions were clear-cut or shifting. Few parents did not engage in decisions. CONCLUSION: Parents' decisions about place of end-of-life care and death are affected by personal, interpersonal, timing and disease-related factors. Parents are best supported in decision-making when information is presented clearly and honestly with recognition of what acting as 'good parents' means to them, and opportunities to enhance their caregiving competence to care for their child at home, if they choose so.
Papadatou D; Kalliani V; Karakosta E; Liakopoulou P; Bluebond-Langner M
Palliative Medicine
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/10.1177/0269216320967547" target="_blank" rel="noreferrer noopener">10.1177/0269216320967547</a>
Family-oriented Palliative Care: Parents' Perspective And Experience
Family Study; Palliative Therapy; Brain Damage; Child; Chromosome Disorder; Chromosome Disorders; Complication; Controlled Study; Dyspnea; Gene Deletion; Hospice; Hospital; Human; Length Of Stay; Life Expectancy; Medical Service; Metabolic Disorder; Neuromuscular Disease; Only Child; Pain; Palliative Care; Quality Of Life; Seizure; Spasticity; Spiritual Care; Symptom
Palliative care is needed for children with neurodegenerative and progressive neuromuscular diseases, inborn genetic (e.g., chromosomal disorders, deletion syndromes) or metabolic disorders, as well as for children with early brain lesions which can decrease life-expectancy due to complications. Care for children with life-shortening diseases is a major challenge for parents and the whole family. A vast majority of families prefer to live at home with their severely sick child, and they also want to avoid admissions to hospital and stay at their familiar environment for the final period of life. To cope with all these demands, many families need a lot of support. By means of early integration of palliative perspective and care support can be adapted to the needs of the child and the family. Many children are living at home with their parents for many years. In many cases, quality of life and a stable familiar environment can be assured only by substantial external assistance. Support by specialized palliative care teams (SAPV), hospices and hospice services is able to unburden families. Important tasks are continuous and 24-hour medical services for symptom control (regarding e.g., pain, dyspnea, seizures, spasticity) as well as psychological, emotional, social and spiritual care for patients and all other family members.
Pietz J
Neuropediatrics
2016
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).
DOI: 10.1055/s-0036-1583746
Exposure to home-based pediatric palliative and hospice care and its impact on hospital and emergency care charges at a single institution
adolescent; Child; Female; Hospitalization; Humans; infant; Male; retrospective studies; Young Adult; Palliative Care; hospice care; Length of Stay; Hospitals; Hospital Charges; Emergency Service; quality of life; Pediatric; Preschool; Hospital
BACKGROUND: Pediatric palliative care (PPC) aims to promote quality of life for children and their families through prevention and relief of physical and psychosocial symptoms. Little is known about how PPC/hospice services impact health care resource utilization in an uncertain financial landscape. OBJECTIVE: The study objective was to compare pediatric hospital health care resource utilization before and after enrollment in a home PPC/hospice program. DESIGN: The study was a retrospective administrative data analysis. SETTING/SUBJECTS: The study took place in a pediatric multispecialty hospital. Data were analyzed for 425 children ages 1-21 years who received home-based PPC/hospice services between 2000 and 2010. MEASUREMENTS: Hospitalization and emergency room (ER) administrative data were examined to determine whether or not there were changes in total number of hospital admissions, length of stay (LOS), and hospital billed charges before compared to after PPC/hospice exposure. RESULTS: There was no change in average total number of admissions pre-/post-PPC/hospice exposure; however, we found a significant increase in hospital/ER admissions for children with cancer diagnoses with longer exposure to PPC/hospice services. There were statistically significant reductions in LOS and total charges for hospital-based care; reductions were more pronounced in the noncancer group. Noncancer patients with at least six months of PPC exposure showed a significant decrease in total LOS from pre- to post-program admission by an average of 38 days, and an average decrease in total hospital charges of nearly $275,000. CONCLUSION: Enrollment in home-based PPC/hospice was associated with lower hospital and ER LOS and total hospital charges as compared with the period prior to enrollment for children with noncancer diagnoses.
2014-02
Postier A; Chrastek J; Nugent S; Osenga K; Friedrichsdorf SJ
Journal Of Palliative Medicine
2014
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).
Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0287" target="_blank" rel="noreferrer">10.1089/jpm.2013.0287</a>