Impact of Natural Disasters on Children Receiving Palliative Care Lessons Learned from Hurricane Harvey
To discuss the implications of natural disasters for pediatric palliative care patients and suggest a series of best practices for pediatric palliative care patients, their families, and their healthcare providers.
Rubenstein J; Kaplow Julie; Moresco B; Kang T
Current Pediatrics Reports
2018
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<a href="http://doi.org/10.1007/s40124-018-0170-y" target="_blank" rel="noreferrer noopener">10.1007/s40124-018-0170-y</a>
We Built It…They All Came…Now How to Keep from Drowning? Pediatric Palliative Care Program Development 202: Skills in Your Toolbox for Growth and Sustainability (P20)
Palliative Care; Program Development; Drowning; Near Drowning
Kang T; Lotstein D; Humphrey L; Klick J; Williams C
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.11.080" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.11.080</a>
Economic Impact of Advanced Pediatric Cancer on Families
Palliative Care; Pediatric; oncology; Disparities; financial; poverty
CONTEXT: Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer. OBJECTIVES: To describe perceived financial hardship, work disruptions, income losses, and associated economic impact in families of children with advanced cancer stratified by federal poverty level (FPL). METHODS: Cross-sectional survey of 86 parents of children with progressive, recurrent, or nonresponsive cancer at three children's hospitals. Seventy-one families with complete income data (82%) are included in this analysis. RESULTS: Parental work disruptions were prevalent across all income levels, with 67 (94%) families reporting some disruption. At least one parent quit a job because of the child's illness in 29 (42%) families. Nineteen (27%) families described their child's illness as a great economic hardship. Income losses because of work disruptions were substantial for all families; families at or below 200% FPL, however, were disproportionately affected. Six (50%) of the poorest families lost more than 40% of their annual income as compared with two (5%) of the wealthiest families (P = 0.006). As a result of income losses, nine (15%) previously nonpoor families fell from above to below 200% FPL. CONCLUSION: The economic impact of pediatric advanced cancer on families is significant at all income levels, although poorer families suffer disproportionate losses. Development of ameliorative intervention strategies is warranted.
Bona K; Dussel V; Orellana L; Kang T; Geyer R; Feudtner C; Wolfe J
Journal Of Pain And Symptom Management
2013
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2013.04.003" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.04.003</a>
Parental explicit heuristics in decision-making for children with life-threatening illnesses
Child; Female; Humans; Male; Young Adult; Cohort Studies; Prospective Studies; Professional-Family Relations; Communication; Choice Behavior; Problem Solving; Hospitals; Pediatric; adolescent; Preschool; Psychological; decision making; infant; Parents/psychology; Palliative Care/psychology; Philadelphia; Parent caregivers; Chronic Disease/psychology/therapy; Interview; Judgment; Aphorisms and Proverbs as Topic; Critical Illness/psychology/therapy
OBJECTIVE: To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by parents of children with life-threatening illnesses when confronting and making medical decisions. METHODS: Prospective cross-sectional observational study of 69 parents of 46 children who participated in the Decision-making in Pediatric Palliative Care Study between 2006 and 2008 at the Children's Hospital of Philadelphia. Parents were guided individually through a semistructured in-depth interview about their experiences and thoughts regarding making medical decisions on behalf of their ill children, and the transcribed interviews were qualitatively analyzed. RESULTS: All parents in our study employed explicit heuristics in interviews about decision-making for their children, with the number of identified explicit heuristics used by an individual parent ranging from tens to hundreds. The heuristics served 5 general functions: (1) to depict or facilitate understanding of a complex situation; (2) to clarify, organize, and focus pertinent information and values; (3) to serve as a decision-making compass; (4) to communicate with others about a complex topic; and (5) to justify a choice. CONCLUSIONS: Explicit heuristics played an important role in decision-making and communication about decision-making in our population of parents. Recognizing explicit heuristics in parent interactions and understanding their content and functions can aid clinicians in their efforts to partner with parents in the decision-making process.
Renjilian CB; Womer JW; Carroll KW; Kang T; Feudtner C
Pediatrics
2013
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Journal Article
<a href="http://doi.org/10.1542/peds.2012-1957" target="_blank" rel="noreferrer">10.1542/peds.2012-1957</a>
Good-parent beliefs of parents of seriously ill children
adolescent; Child; Cross-Sectional Studies; Female; Humans; infant; Male; Parent-Child Relations; Parents; Questionnaires; Chronic disease; Child welfare; Acute Disease; Stress; Practice; Preschool; Adaptation; Psychological; Attitudes; Newborn; Health Knowledge; Philadelphia
IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents' perceptions regarding the relative importance of 12 good-parent attributes. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness. MAIN OUTCOMES AND MEASURES: Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. RESULTS: The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. CONCLUSIONS AND RELEVANCE: Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.
2015-01
Feudtner C; Walter JK; Faerber JA; Hill DL; Carroll KW; Mollen CJ; Miller VA; Morrison WE; Munson DA; Kang T; Hinds PS
Jama Pediatrics
2015
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Journal Article
<a href="http://doi.org/10.1001/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2014.2341</a>
Shifting place of death among children with complex chronic conditions in the United States, 1989-2003
Child; Female; Humans; infant; Male; Attitude to Death; adolescent; Preschool; infant; Newborn; retrospective studies; United States/epidemiology; Chronic Disease/mortality; Hospitals/statistics & numerical data; Palliative Care/statistics & numerical data; Residence Characteristics/statistics & numerical data; Terminally Ill/statistics & numerical data
CONTEXT: The place where children with complex chronic conditions are dying may be shifting toward residential homes due to the evolving epidemiology of life-threatening childhood conditions, advances in home-based medical technology, and changes in attitudes about pediatric palliative care and hospice services. OBJECTIVES: To determine whether pediatric deaths attributed to complex chronic conditions are increasingly occurring in the home and to assess race and ethnicity disparities in the location of death. DESIGN, SETTING, AND PARTICIPANTS: Retrospective national-level case series drawn from the National Center for Health Statistics' Multiple Cause of Death Files spanning 1989-2003. Participants included all deceased individuals aged 19 years or younger with a complex chronic condition excluding injury and noncomplex chronic conditions (as classified by International Classification of Diseases, Ninth Revision or International Classification of Diseases, Tenth Revision). MAIN OUTCOME MEASURE: Place where death occurred. RESULTS: Among the 22.1% of deaths (198 160 of 896 509 total deaths) attributed to a complex chronic condition between 1989 and 2003, the percentage of individuals dying at home increased significantly (P<.001) over time for infants (aged <1 year) (4.9% in 1989 and 7.3% in 2003); 1- to 9-year-olds (17.9% and 30.7%); and for 10- to 19-year-olds (18.4% and 32.2%). Adjusting for decedent characteristics, the odds of dying at home increased significantly each year (odds ratio, 1.04; 95% confidence interval, 1.03-1.04) and were reduced among both black and Hispanic decedents (odds ratio, 0.50; 95% confidence interval, 0.48-0.52 and odds ratio, 0.52; 95% confidence interval, 0.50-0.54, respectively) compared with white decedents. CONCLUSIONS: Children who die with underlying complex chronic conditions increasingly are dying at home. Racial and ethnic disparities regarding place of death may represent important limitations and opportunities for improvement in the current systems of pediatric chronic and palliative care.
2007
Feudtner C; Feinstein JA; Satchell M; Zhao H; Kang T
Journal Of The American Medical Association
2007
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Journal Article
<a href="http://doi.org/10.1001/jama.297.24.2725" target="_blank" rel="noreferrer">10.1001/jama.297.24.2725</a>
The management of pain in children with life-limiting illnesses
Child; Humans; Pain Measurement; Analgesics; Severity of Illness Index; Chronic disease; Methadone/therapeutic use; Hydromorphone/therapeutic use; Opioid/therapeutic use; Fentanyl/therapeutic use; Morphine/therapeutic use; Nociceptors/physiology; Codeine/therapeutic use; Ketamine/therapeutic use; Oxycodone/therapeutic use; Pain/diagnosis/drug therapy/physiopathology
The management of pain in children with life-limiting illnesses is complex and unfortunately not often done effectively. Pain is a multidimensional symptom that can overshadow all other experiences of both the child and family. This article focuses on topics common to practitioners caring for children with lifelimiting illnesses, including a review of myths and obstacles to achieving adequate pain control, a review of the pathophysiology of pain, an overview of the use of opioids in children, an approach to the management of neuropathic pain, and a brief discussion of nonpharmacologic pain management strategies.
2007
Friedrichsdorf SJ; Kang T
Pediatric Clinics Of North America
2007
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Journal Article
<a href="http://doi.org/10.1016/j.pcl.2007.07.007" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.07.007</a>
Psychosocial and spiritual needs of children living with a life-limiting illness
Child; Humans; Health Services Needs and Demand; Interdisciplinary Communication; Expressed Emotion; Activities of Daily Living; Spirituality; Sibling Relations; Psychology; patient care team; Chronic disease; social support; Palliative Care/methods; Pain/psychology/therapy
Quality end-of-life care includes the management of distressing symptoms; provisions of care, including the assessment and management of psychosocial and spiritual needs; and respite from diagnosis through death and bereavement. Meeting the palliative care goal of improved quality of life depends on medical and nursing practitioners understatnding and effectively assessing psychosocial symptoms.
2007
McSherry M; Kehoe K; Carroll JM; Kang T; Rourke MT
Pediatric Clinics Of North America
2007
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Journal Article
<a href="http://doi.org/10.1016/j.pcl.2007.08.002" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.08.002</a>
Hopeful thinking and level of comfort regarding providing pediatric palliative care: A survey of hospital nurses
Nurses
2007
Feudtner C; Santucci G; Feinstein J; Snyder CR; Rourke MT; Kang T
Pediatrics
2007
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Journal Article
<a href="http://doi.org/10.1542/peds.2006-1048" target="_blank" rel="noreferrer">10.1542/peds.2006-1048</a>
Complementary and alternative therapy use in pediatric oncology patients with failure of frontline chemotherapy
Child; Female; Humans; infant; Male; Survival Rate; Young Adult; Adult; Questionnaires; Treatment Outcome; Religion; Complementary Therapies; Treatment Failure; adolescent; Preschool; infant; Newborn; Neoplasms/therapy; Antineoplastic Agents/therapeutic use; Salvage Therapy
BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed. Secondary objectives included describing patient/family objectives for using CAM, satisfaction with CAM, financial and time expenditures on CAM, and patient desire for physician involvement in CAM use. PROCEDURE: Fifty-four patients 0-25 years of age, for whom frontline therapy had failed, were enrolled. The subjects completed an anonymous one-time self-administered questionnaire. RESULTS: Eighty-two percent of respondents reported using CAM, 52% of which reported initiating or increasing CAM use after failure of frontline therapy. The most commonly used CAM categories were prayer/spiritual healing (83%) and oral/dietary supplements (31%). Prayer/spiritual healing was most commonly used to cure or slow the progression of cancer (59%). Oral/dietary supplements were used to improve overall health and well-being (65%). Estimates of money and time spent ranged from $0 to >$1,275 (median $225) and 1 to > 700 hr (median 10 hr). Sixty percent of CAM users reported their oncologist was unaware of their use. Most participants who used non-spiritual/prayer CAM continued use while hospitalized or while receiving chemotherapy. CONCLUSIONS: Understanding usage patterns may better help pediatric oncologists and palliative-care specialists address the needs of this population, and protect against potentially dangerous drug interactions or side effects from combined CAM and chemotherapy use.
Paisley MA; Kang T; Insogna IG; Rheingold SR
Pediatric Blood & Cancer
2011
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Journal Article
<a href="http://doi.org/10.1002/pbc.22939" target="_blank" rel="noreferrer">10.1002/pbc.22939</a>
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
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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
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Journal Article
<a href="http://doi.org/10.1542/peds.2010-3225" target="_blank" rel="noreferrer">10.1542/peds.2010-3225</a>
Problems And Hopes Perceived By Mothers, Fathers And Physicians Of Children Receiving Palliative Care
Hope; Palliative Therapy; Physician; Problem Solving; Psychology; Adolescent; Child; Decision Making; Father; Female; Human; Human Relation; Infant; Male; Mother; Newborn; Preschool Child; Quality Of Life; Young Adult
BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'. METHOD: Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians. RESULTS: The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively). CONCLUSION: Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.
Hill D L; Miller V A; Hexem K R; Carroll K W; Faerber J A; Kang T; Feudtner C
Health Expectations
2015
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10.1111/hex.12078