Pediatric nurses' individual and group assessments of palliative, end-of-life, and bereavement care
Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Terminal Care; Attitude of Health Personnel; Hospitals; Nursing Staff; Pediatric; bereavement; Nurses/psychology; Hospital/psychology
BACKGROUND: Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital. OBJECTIVE: To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units. METHOD: A cross-sectional survey of nurses at a freestanding children's hospital in 2005. RESULTS: Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics. CONCLUSIONS: Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs.
Tubbs-Cooley HL; Santucci G; Kang T; Feinstein JA; Hexem KR; Feudtner C
Journal Of Palliative Medicine
2011
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.2010.0409" target="_blank" rel="noreferrer">10.1089/jpm.2010.0409</a>
Pediatric palliative care patients: a prospective multicenter cohort study
adolescent; Child; Female; Hospitalization; Humans; infant; Male; United States; Young Adult; Palliative Care; Prevalence; Chronic disease; Eligibility Determination; Follow-Up Studies; Medical Audit; Prospective Studies; adolescent; Preschool; Palliative Care/organization & administration; infant; Newborn; PEDI Study; United States/epidemiology; Chronic Disease/epidemiology/therapy; Eligibility Determination/methods; Hospitalization/trends; Medical Audit/organization & administration
OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.
Feudtner C; Kang T; Hexem KR; Friedrichsdorf SJ; Osenga K; Siden H; Friebert SE; Hays Ross M; Dussel V; Wolfe J
Pediatrics
2011
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/10.1542/peds.2010-3225" target="_blank" rel="noreferrer">10.1542/peds.2010-3225</a>
Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study
Child; Female; Humans; infant; Male; Young Adult; Cohort Studies; Patient Discharge; Pediatrics; Hospital Mortality; Logistic Models; Prognosis; adolescent; Preschool; infant; Models; Newborn; retrospective studies; Theoretical; mortality; Pennsylvania/epidemiology
BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To develop a prognostication models using administratively available data to predict the probability of in-hospital and 1-year postdischarge death. METHODS: Retrospective cohort study of 0-21 year old patients admitted to Pennsylvania hospitals from 1994-2001 and followed for 1-year postdischarge mortality, assessing logistic regression models ability to predict in-hospital and 1-year postdischarge deaths. RESULTS: Among 678,365 subjects there were 2,202 deaths that occurred during the hospitalization (0.32% of cohort) and 860 deaths that occurred 365 days or less after hospital discharge (0.13% of cohort). The model predicting hospitalization deaths exhibited a C statistic of 0.91, with sensitivity of 65.9% and specificity of 92.9% at the 99th percentile cutpoint; while the model predicting 1-year postdischarge deaths exhibited a C statistic of 0.92, with sensitivity of 56.1% and specificity of 98.4% at the 99th percentile cutpoint. CONCLUSIONS: Population-level mortality prognostication of hospitalized children using administratively available data is feasible, assisting the comparison of health care services delivered to children with the highest probability of dying during and after a hospital admission.
2009
Feudtner C; Hexem KR; Shabbout M; Feinstein JA; Sochalski J; Silber JH
Journal Of Palliative Medicine
2009
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.2008.0206" target="_blank" rel="noreferrer">10.1089/jpm.2008.0206</a>
Putting on a happy face: emotional expression in parents of children with serious illness
Parent caregivers
CONTEXT: Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations in which parents typically experience strong emotions. OBJECTIVES: To explore emotion using the Linguistic Inquiry and Word Count (LIWC) and a self-report questionnaire to better understand the relationship between these two measures of emotion in a pediatric care context. METHODS: Sixty-nine parents of 47 children who were participants in the Decision Making in Pediatric Palliative Care Study at The Children's Hospital of Philadelphia took part in this study. Parents completed the Positive and Negative Affect Schedule (PANAS) and a semistructured interview about their children and experience with medical decision making. The transcribed interviews were analyzed with the LIWC program, which yields scores for positive and negative emotional expression. The association between LIWC and PANAS scores was evaluated using multivariate linear regression to adjust for potential confounders. RESULTS: Parents who used more positive words when speaking about the illnesses of their children and the experience of medical decision making were more likely to report lower levels of positive affect on the PANAS: increase in the standard deviation of positive emotional expression was associated with an unadjusted 7.4% decrease in the self-reported positive affect (P = 0.015) and an adjusted 7.0% decrease in the self-reported positive affect (P = 0.057) after modeling for potential confounders. Increase in the standard deviation of negative emotional expression was associated with an adjusted 9.4% increase in the self-reported negative affect (P = 0.036). CONCLUSION: The inverse relationship between parents' positive emotional expression and their self-reported positive affect should remind both researchers and clinicians to be cognizant of the possibilities for emotional miscues, and consequent miscommunication, in the pediatric care setting.
Hexem KR; Miller VA; Carroll KW; Faerber JA; Feudtner C
Journal Of Pain And Symptom Management
2013
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/10.1016/j.jpainsymman.2012.03.007" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2012.03.007</a>