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1

Olsen, William C. "“Children For Death”." Cahiers d'études africaines 42, no. 167 (January 1, 2002): 521–50. http://dx.doi.org/10.4000/etudesafricaines.155.

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2

Goldman, Ann. "Children and death." Child: Care, Health and Development 21, no. 6 (November 1995): 367–68. http://dx.doi.org/10.1111/j.1365-2214.1995.tb00765.x.

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3

Doronjski, Aleksandra, Milena Bjelica, Slobodan Spasojevic, Tanja Radovanovic, Jelena Culafic, and Vesna Stojanovic. "Sudden death in children." Srpski arhiv za celokupno lekarstvo 146, no. 1-2 (2018): 55–62. http://dx.doi.org/10.2298/sarh170113114d.

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Introduction/Objective. Sudden death in children may occur as a result of many diseases and accidents, while the cause often remains unknown. There are different terms in the literature that represent the causes of sudden death in children. The aim of our study was to determine the most common cause of sudden death in children admitted to the Clinic of Pediatrics. Methods. The retrospective study was conducted in the period from January 1, 1995 to December 31, 2015 and included 49 patients, aged from 10 days to 17 years, in whom death occurred in the Emergency Department and in the first 48 hours of hospitalization. Results. In 23 patients (47%) the cause of death was infection, in 10 patients (20%) heart failure, four patients (8%) died due to status epilepticus, the same number of patients (8%) died due to aspiration of a foreign body, while the rest of the patients died due to diabetic ketoacidosis (2%), rickets (2%), carbon monoxide poisoning (2%), hemolytic anemia (2%), suicide by hanging (2%), drowning (2%), sudden infant death syndrome (2%), and sudden unexpected death in epilepsy (2%). Most of the patients in our study were infants (43%). Conclusion. Our study shows that infants are at the highest risk of sudden death, while the most frequent causes of death are infections and cardiovascular diseases.
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4

Hemmings, Peta. "Explaining death to children." Bereavement Care 16, no. 3 (December 1997): 31–33. http://dx.doi.org/10.1080/02682629708657417.

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5

Vaughan Cole, Beth. "Helping Children Understand Death." Journal of Child and Adolescent Psychiatric Nursing 14, no. 1 (January 2001): 5–6. http://dx.doi.org/10.1111/j.1744-6171.2001.tb00282.x.

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6

Banasiak, Kenneth J., and George Lister. "Brain death in children." Current Opinion in Pediatrics 15, no. 3 (June 2003): 288–93. http://dx.doi.org/10.1097/00008480-200306000-00011.

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7

Vas, C. J. "Brain death in children." Indian Journal of Pediatrics 57, no. 6 (November 1990): 735–42. http://dx.doi.org/10.1007/bf02722266.

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8

SCOTT, J. L. "On Children and Death." American Journal of Psychiatry 142, no. 5 (May 1985): 652—a—653. http://dx.doi.org/10.1176/ajp.142.5.652-a.

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9

Rajanayagam, Sharmini. "Cardiac death in children." Nature Reviews Cardiology 6, no. 10 (October 2009): 612. http://dx.doi.org/10.1038/nrcardio.2009.143.

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10

Thompson, Neil. "Children, death and ageism." Child Family Social Work 2, no. 1 (February 1997): 59–65. http://dx.doi.org/10.1046/j.1365-2206.1997.00041.x.

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11

Shewmon, D. A. "Brain death in children." Neurology 38, no. 11 (November 1, 1988): 1813. http://dx.doi.org/10.1212/wnl.38.11.1813-b.

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12

Alvarez, L. A., S. L. Moshe, A. L. Belman, J. Maytal, T. J. Resnick, and M. Keilson. "Brain death in children." Neurology 38, no. 11 (November 1, 1988): 1814. http://dx.doi.org/10.1212/wnl.38.11.1814.

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13

Brook, L., and R. Hain. "Predicting death in children." Archives of Disease in Childhood 93, no. 12 (December 1, 2008): 1067–70. http://dx.doi.org/10.1136/adc.2007.127332.

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14

Doka, Kenneth J. "When Children Face Death." Contemporary Psychology: A Journal of Reviews 43, no. 3 (March 1998): 176–77. http://dx.doi.org/10.1037/001538.

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15

Abou Rashid, N., S. Al Jirf, and H. Bashour. "Causes of death among Syrian children using verbal autopsy." Eastern Mediterranean Health Journal 2, no. 3 (September 2, 2021): 440–48. http://dx.doi.org/10.26719/1996.2.3.440.

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The causes of death in children under five years were studied using a structured verbal autopsy questionnaire. Possible determinants of death were also investigated. About 44% of deaths were among neonates [below 28 days of age] ; the major causes of death in neonates were prematurity [33%] and birth-related factors [30%]. In infants [1-11 months of age], the leading cause of death was congenital malformations [24%]. Accidents were responsible for one-third of deaths in children aged 1-4 years. Factors that might have contributed to death were investigated. The public health importance of causes of death was evaluated and its implications were discussed
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16

Dandona, Rakhi, G. Anil Kumar, Sibin George, Amit Kumar, and Lalit Dandona. "Risk profile for drowning deaths in children in the Indian state of Bihar: results from a population-based study." Injury Prevention 25, no. 5 (May 19, 2018): 364–71. http://dx.doi.org/10.1136/injuryprev-2018-042743.

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BackgroundWe report on incidence of drowning deaths and related contextual factors in children from a population-based study in the Indian state of Bihar which estimated the causes of death using verbal autopsy (VA).MethodsInterviews were conducted for deaths in 1–14 years population that occurred from January 2012 to March 2014 in 109 689 households (87.1% participation) in 1017 clusters representative of the state. The Population Health Metrics Research Consortium shortened VA questionnaire was used for interview and cause of death was assigned using the SmartVA automated algorithm. The annualised unintentional drowning death incidence, activity prior to drowning, the body of water where drowning death had occurred and contextual information are reported.FindingsThe survey covered 224 077 children aged 1–14 years. Drowning deaths accounted for 7.2%, 12.5% and 5.8% of all deaths in 1–4, 5–9 and 10–14 years age groups, respectively. The adjusted incidence of drowning deaths was 14.3 (95% CI 14.0 to 14.7) per 100 000 children, with it being higher in urban (16.1, 95% CI 14.8 to 17.3) areas. Nearly half of the children drowned in a river (5.9, 95% CI 5.6 to 6.1) followed by in a pond (2.8, 95% CI 2.6 to 2.9). Drowning death incidence was the highest while playing (5.1, 95% CI 4.9 to 5.4) and bathing (4.0, 95% CI 3.8 to 4.2) with the former accounting for more deaths in 1–4 years age group. Sixty per cent of children were already dead when found. None of these deaths were reported to the civil registration system to obtain death certificate.InterpretationThe findings from this large representative sample of children document the magnitude of and variations in unintentional drowning deaths in Bihar. Urgent targeted drowning interventions are needed to address the risk in children. Gross under-reporting of drowning deaths in children in India needs attention.
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17

Taggart, Melissa W., and Randall Craver. "Causes of Death, Determined by Autopsy, in Previously Healthy (or Near-Healthy) Children Presenting to a Children's Hospital." Archives of Pathology & Laboratory Medicine 130, no. 12 (December 1, 2006): 1780–85. http://dx.doi.org/10.5858/2006-130-1780-coddba.

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Abstract Context.—Childhood mortality statistics are based on death certificates. The causes of death listed on death certificates may not be confirmed by autopsy findings, and mortality statistics may reflect deaths of many children with chronic disease. The diseases responsible for nontraumatic deaths of previously healthy children cannot be determined from these statistics. Objective.—To identify causes of nontraumatic death in previously healthy or near-healthy children presenting to a children's hospital. Design.—Retrospective review of autopsy protocols from 572 children who died at Children's Hospital of New Orleans in Louisiana between 1985 and 2003, with the premise that autopsy was done after most deaths of previously healthy or near-healthy children. Causes of death were grouped by disease processes and age groups and were compared to premortem clinical diagnoses. Results.—Eighty-eight autopsy protocols were from children who were previously healthy or near healthy before the hospital admission during which they died. The median age was 11.4 months and the median length of stay was 2 days. Infection, primarily of the central nervous system and systemic (septicemia), was the most common cause of death (53%, 47 cases). Neoplasia, primarily of the central nervous and hematologic systems, was the second most common cause (15%, 13 cases). The predominant organ system involved with disease was the nervous system (36%, 32 cases). Unrecognized congenital disorders were found in approximately 10% of the cases. Conclusions.—Infectious diseases are a frequent cause of death in previously healthy children. Fatal diseases most frequently affect the nervous system. Autopsy provides valuable information in the death of healthy children.
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18

Slaughter, Virginia, and Maya Griffiths. "Death Understanding and Fear of Death in Young Children." Clinical Child Psychology and Psychiatry 12, no. 4 (October 2007): 525–35. http://dx.doi.org/10.1177/1359104507080980.

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19

Matsui, Takehiko, Kunio Ichikawa, Kouichi Yamaguchi, Hiroshi Odajima, Eisaku Iwasaki, Tokuko Mukoyama, and Minoru Baba. "DEATH FROM ASTHMA IN CHILDREN." Nihon Shoni Arerugi Gakkaishi. The Japanese Journal of Pediatric Allergy and Clinical Immunology 5, no. 2 (1991): 81–88. http://dx.doi.org/10.3388/jspaci.5.81.

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20

Matsui, Takehipo, Kenji Nakajima, Minoru Baba, Toshiko Kimura, and Michio Inui. "DEATH FROM ASTHMA IN CHILDREN." Nihon Shoni Arerugi Gakkaishi. The Japanese Journal of Pediatric Allergy and Clinical Immunology 6, no. 2 (1992): 40–47. http://dx.doi.org/10.3388/jspaci.6.40.

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21

Matsui, Takehiko, Youko Miyabayashi, Kunio Ichikawa, Kouichi Yamaguchi, Kan Toyama, Hiroshi Odazima, Kuniyoshi Iwatake, Eisaku Iwasaki, Tokuko Mukoyama, and Minoru Baba. "DEATH FROM ASTHMA IN CHILDREN." Nihon Shoni Arerugi Gakkaishi. The Japanese Journal of Pediatric Allergy and Clinical Immunology 2, no. 1 (1988): 52–59. http://dx.doi.org/10.3388/jspaci.2.52.

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22

Lamers, Elizabeth P. "Children, Death, and Fairy Tales." OMEGA - Journal of Death and Dying 31, no. 2 (October 1995): 151–67. http://dx.doi.org/10.2190/hxv5-wwe4-n1hh-4jeg.

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This article examines the evolution and transformation of themes relating to death and dying in children's literature, using illuminating parallels from historical demographics of mortality and the development of housing. The classic fairy tale “Little Red Riding Hood” is used to draw these trends together.
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23

Bohn, Desmond, David Chiasson, and Dirk Huyer. "Investigations After Death in Children." Pediatric Critical Care Medicine 19 (August 2018): S69—S71. http://dx.doi.org/10.1097/pcc.0000000000001639.

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24

deArteaga, Carolyn G. "Helping Children Deal with Death." Journal of Christian Nursing 10, no. 1 (1993): 28–31. http://dx.doi.org/10.1097/00005217-199310010-00008.

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25

Mclntyre, Barbara Betker, and Mary Raymer. "Expressive Therapies, Children and Death." Canadian Art Therapy Association Journal 4, no. 2 (March 1989): 9–21. http://dx.doi.org/10.1080/08322473.1989.11432179.

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26

Olowu, A. A. "Helping children cope with death." Early Child Development and Care 61, no. 1 (January 1990): 119–23. http://dx.doi.org/10.1080/0300443900610114.

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27

Klitzner, T. S. "Sudden cardiac death in children." Circulation 82, no. 2 (August 1990): 629–32. http://dx.doi.org/10.1161/01.cir.82.2.629.

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28

Billings, Anna. "Helping Children to Confront Death." Bereavement Care 11, no. 1 (March 1992): 14. http://dx.doi.org/10.1080/02682629208657283.

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29

Jackson, Maggie, and Jim Colwell. "Talking to children about death." Mortality 6, no. 3 (November 2001): 321–25. http://dx.doi.org/10.1080/13576270120082970.

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30

Eckner, F. A. O., M. I. Jumbelic, J. Richmond, and R. H. Kirschner. "Sudden Cardiac Death in Children." American Journal of Forensic Medicine and Pathology 10, no. 3 (September 1989): 264. http://dx.doi.org/10.1097/00000433-198909000-00023.

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31

Morse, Melvin L. "Near-Death Experiences of Children." Journal of Pediatric Oncology Nursing 11, no. 4 (January 1994): 139–44. http://dx.doi.org/10.1177/104345429401100403.

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32

Martinson, Ida M. "Near-Death Experiences of Children." Journal of Pediatric Oncology Nursing 11, no. 4 (January 1994): 145. http://dx.doi.org/10.1177/104345429401100404.

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33

Schonfeld, David J. "Talking with children about death." Journal of Pediatric Health Care 7, no. 6 (November 1993): 269–74. http://dx.doi.org/10.1016/s0891-5245(06)80008-8.

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34

Denjoy, I., J. M. Lupoglazoff, P. Guicheney, and A. Leenhardt. "Arrhythmic sudden death in children." Archives of Cardiovascular Diseases 101, no. 2 (January 2008): 121–25. http://dx.doi.org/10.1016/s1875-2136(08)70269-9.

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35

Stuber, Margaret L., and Beth M. Houskamp. "Spirituality in children confronting death." Child and Adolescent Psychiatric Clinics of North America 13, no. 1 (January 2004): 127–36. http://dx.doi.org/10.1016/s1056-4993(03)00093-2.

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36

Janszky, József, and Anna Szücs. "Death in children with epilepsy." Lancet 360, no. 9346 (November 2002): 1698. http://dx.doi.org/10.1016/s0140-6736(02)11630-8.

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37

Camfield, Carol, and Peter Camfield. "Death in children with epilepsy." Lancet 360, no. 9346 (November 2002): 1698–99. http://dx.doi.org/10.1016/s0140-6736(02)11631-x.

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38

Tavora, Fabio, Ling Li, and Allen Burke. "Sudden coronary death in children." Cardiovascular Pathology 19, no. 6 (November 2010): 336–39. http://dx.doi.org/10.1016/j.carpath.2010.06.001.

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39

Crandall, Laura, and Orrin Devinsky. "Sudden unexplained death in children." Lancet Child & Adolescent Health 1, no. 1 (September 2017): 8–9. http://dx.doi.org/10.1016/s2352-4642(17)30003-2.

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40

Matsui, Takehiko, and Minoru Baba. "Death from Asthma in Children." Pediatrics International 32, no. 2 (April 1990): 205–8. http://dx.doi.org/10.1111/j.1442-200x.1990.tb00812.x.

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41

Braun, Michal, and Lea Baider. "Souvenir Children: Death and Rebirth." Journal of Clinical Oncology 25, no. 34 (December 1, 2007): 5525–27. http://dx.doi.org/10.1200/jco.2007.11.8372.

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42

Penny, Alison. "Helping Children Deal with Death." Children and Young People Now 2019, no. 5 (May 2, 2019): 22–25. http://dx.doi.org/10.12968/cypn.2019.5.22.

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43

MORRAY, JEFFREY P., ELLIOT J. KRANE, ANNE M. LYNN, and DONALD C. TYLER. "Brain Death?" Pediatrics 79, no. 6 (June 1, 1987): 1057. http://dx.doi.org/10.1542/peds.79.6.1057.

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To the Editor.— Because we are now able to provide long-term cardio-pulmonary support, the determination of cerebral death in children is a critical issue, both to provide an unambiguous diagnosis of death and, when appropriate, to allow recovery of organs for transplantation. Perhaps this latter issue provided the impetus for Drake et al1 to evaluate their recent experience at Loma Linda and to present a protocol for the determination of brain death in children.
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44

Otani, Hiroyuki, Miwa Ozawa, Tatsuya Morita, Ayako Kawami, Sahana Sharma, Keiko Shiraishi, and Akira Oshima. "The death of patients with terminal cancer: the distress experienced by their children and medical professionals who provide the children with support care." BMJ Supportive & Palliative Care 9, no. 2 (February 4, 2016): 183–88. http://dx.doi.org/10.1136/bmjspcare-2014-000811.

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BackgroundFew studies have been conducted on the experiences of children of terminally ill patients or hospital-based medical professionals supporting such children.AimThis study explored distress among individuals whose parents died of cancer in childhood and among hospital-based medical professionals supporting such children.DesignA qualitative study.Setting/participantsThe sample was 12 adults whose parents had died of cancer in childhood and 20 hospital-based medical professionals supporting children of patients’ with terminal cancer. In-depth interviews were conducted, focusing on the distress experienced by the participants. The data were analysed thematically.ResultsAmong adults whose parents died of cancer in childhood, we identified themes related to the period before death (eg, concealing the parent's illness), the time of death (eg, alienation due to isolation from the parent), soon after death (eg, fear and shock evoked by the bizarre circumstances, regrets regarding the relationship with the deceased parent before death), several years thereafter (ie, distinctive reflection during adolescence, prompted by the parent's absence) and the present time (ie, unresolved feelings regarding losing the parent). We identified seven themes among the medical professionals (eg, lack of knowledge/experience with children, the family's attempts to shield the child from the reality of death, estrangement from the family once they leave the hospital).ConclusionsAn important finding of the study is that the participants’ grief reaction to their parents’ deaths during childhood was prolonged. Moreover, hospital medical professionals may find it difficult to directly support affected children. Comprehensive support involving organisations (eg, local communities) may be necessary for children who have lost a parent.
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45

Feigelman, William, Beverly Feigelman, and Lillian M. Range. "Grief and Healing Trajectories of Drug-Death-Bereaved Parents." OMEGA - Journal of Death and Dying 80, no. 4 (January 22, 2018): 629–47. http://dx.doi.org/10.1177/0030222818754669.

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We explored parents’ views of the trajectories of their adult children’s eventual deaths from drugs with in-depth qualitative interviews from 11 bereaved parents. Parents reported great emotional distress and high financial burdens as their children went through death spirals of increasing drug involvements. These deaths often entailed anxiety-inducing interactions with police or medical personnel, subsequent difficulties with sharing death cause information with socially significant others, and longer term problems from routine interactions. Eventually, though, many of these longer term bereaved parents reported overcoming these obstacles and developing posttraumatic growth. Openly disclosing the nature of the death seemed to be an important building block for their healing.
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46

Quinn, Charles T., Zora R. Rogers, and George R. Buchanan. "Survival of children with sickle cell disease." Blood 103, no. 11 (June 1, 2004): 4023–27. http://dx.doi.org/10.1182/blood-2003-11-3758.

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Abstract Contemporary survival data are not available for children with sickle cell disease (SCD). The few previous childhood SCD cohort studies do not reflect the benefits of modern therapy. We defined an inception cohort of newborns with sickle cell anemia (SS), sickle-β°-thalassemia (S β°), sickle-hemoglobin C disease (SC), or sickle-β+-thalassemia (Sβ+) who were identified by newborn screening and followed for up to 18 years. The incidence of death and stroke were calculated. Overall survival, SCD-related survival (considering only SCD-related deaths), and strokefree survival were determined. The 711 subjects provided 5648 patient-years of observation. Twenty-five subjects died; mean age at death was 5.6 years. Five patients died from infection. Thirty had at least one stroke. Among SS and Sβ° subjects (n = 448), the overall rates of death and stroke were 0.59 and 0.85/100 patient-years. Survival analysis of SS and Sβ° subjects predicted the cumulative overall, SCD-related, and stroke-free survival to be 85.6%, 93.6%, and 88.5% by 18 years of age. No SCD-related deaths or strokes occurred in SC or Sβ+ subjects (n = 263). Childhood mortality from SCD is decreasing, the mean age at death is increasing, and a smaller proportion of deaths are from infection.
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47

Cox, Meredith, Erin Garrett, and James A. Graham. "Death in Disney Films: Implications for Children's Understanding of Death." OMEGA - Journal of Death and Dying 50, no. 4 (June 2005): 267–80. http://dx.doi.org/10.2190/q5vl-klf7-060f-w69v.

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This study examined the potential influence of Disney films on children's concepts of death. A content analysis was performed on 23 death scenes from 10 selected full-length Disney Classic animated films. The portrayal of death focused on five categories: character status; depiction of death; death status; emotional reaction; and causality. The findings indicate that some animated Disney films present scenes that eclipse the permanence and irreversibility of death and often leave deaths (especially those of villains) emotionally unacknowledged. Previous work has shown that many children tend not to discuss death with their friends or parents for many reasons. More importantly, the films may serve as catalysts to introduce the concept of death into discussions between children, peers, and adults.
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Nersesian, William S., Michael R. Petit, Ruth Shaper, Don Lemieux, and Ellen Naor. "Childhood Death and Poverty: A Study of All Childhood Deaths in Maine, 1976 to 1980." Pediatrics 75, no. 1 (January 1, 1985): 41–50. http://dx.doi.org/10.1542/peds.75.1.41.

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All child deaths occurring from 1976 to 1980 in Maine were studied. All children who were participating in social welfare programs (Medicaid, Food Stamps, or Aid to Families with Dependent Children [AFDC]) at the time of death were categorized as children from "low-income" families. This group of children had an overall death rate 3.1 times greater than children who were not on a social welfare program at the time of death. Children from low-income families were at higher risk for disease-related deaths (3.5:1), accidental deaths (2.6:1), and homicide deaths (5.0:1), but not for suicides. These data suggest that excess mortality is occurring among infants and children from low-income families in spite of Medicaid and other poverty programs and that this excess mortality has important public health and social policy implications. Pediatricians and others interested in the well-being of children should support improvement of current health care delivery and social welfare programs, because the current system is failing to provide an optimal health outlook for every child.
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Costa, Maria da Conceição N., Luciana Lobato Cardim, Cynthia A. Moore, Eliene dos Santos de Jesus, Rita Carvalho-Sauer, Mauricio L. Barreto, Laura C. Rodrigues, et al. "Causes of death in children with congenital Zika syndrome in Brazil, 2015 to 2018: A nationwide record linkage study." PLOS Medicine 20, no. 2 (February 24, 2023): e1004181. http://dx.doi.org/10.1371/journal.pmed.1004181.

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Background Children with congenital Zika syndrome (CZS) have severe damage to the peripheral and central nervous system (CNS), greatly increasing the risk of death. However, there is no information on the sequence of the underlying, intermediate, immediate, and contributing causes of deaths among these children. The aims of this study are describe the sequence of events leading to death of children with CZS up to 36 months of age and their probability of dying from a given cause, 2015 to 2018. Methods and findings In a population-based study, we linked administrative data on live births, deaths, and cases of children with CZS from the SINASC (Live Birth Information System), the SIM (Mortality Information System), and the RESP (Public Health Event Records), respectively. Confirmed and probable cases of CZS were those that met the criteria established by the Brazilian Ministry of Health. The information on causes of death was collected from death certificates (DCs) using the World Health Organization (WHO) DC template. We estimated proportional mortality (PM%) among children with CZS and among children with non-Zika CNS congenital anomalies (CA) by 36 months of age and proportional mortality ratio by cause (PMRc). A total of 403 children with confirmed and probable CZS who died up to 36 months of age were included in the study; 81.9% were younger than 12 months of age. Multiple congenital malformations not classified elsewhere, and septicemia unspecified, with 18 (PM = 4.5%) and 17 (PM = 4.2%) deaths, respectively, were the most attested underlying causes of death. Unspecified septicemia (29 deaths and PM = 11.2%) and newborn respiratory failure (40 deaths and PM = 12.1%) were, respectively, the predominant intermediate and immediate causes of death. Fetuses and newborns affected by the mother’s infectious and parasitic diseases, unspecified cerebral palsy, and unspecified severe protein-caloric malnutrition were the underlying causes with the greatest probability of death in children with CZS (PMRc from 10.0 to 17.0) when compared to the group born with non-Zika CNS anomalies. Among the intermediate and immediate causes of death, pneumonitis due to food or vomiting and unspecified seizures (PMRc = 9.5, each) and unspecified bronchopneumonia (PMRc = 5.0) were notable. As contributing causes, fetus and newborn affected by the mother’s infectious and parasitic diseases (PMRc = 7.3), unspecified cerebral palsy, and newborn seizures (PMRc = 4.5, each) were more likely to lead to death in children with CZS than in the comparison group. The main limitations of this study were the use of a secondary database without additional clinical information and potential misclassification of cases and controls. Conclusion The sequence of causes and circumstances involved in the deaths of the children with CZS highlights the greater vulnerability of these children to infectious and respiratory conditions compared to children with abnormalities of the CNS not related to Zika.
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50

Kløvgaard, Marius, Thomas Hadberg Lynge, Ioannis Tsiropoulos, Peter Vilhelm Uldall, Jytte Banner, Bo Gregers Winkel, Philippe Ryvlin, Jacob Tfelt-Hansen, and Anne Sabers. "Epilepsy-Related Mortality in Children and Young Adults in Denmark." Neurology 98, no. 3 (November 18, 2021): e213-e224. http://dx.doi.org/10.1212/wnl.0000000000013068.

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Abstract:
Background and ObjectivesMortality is increased in epilepsy, but the important issue is that a proportion of epilepsy-related death is potentially preventable by optimized therapy and therefore needs to be identified. A new systematic classification of epilepsy-related mortality has been suggested to identify these preventable deaths. We applied this classification to an analysis of premature mortality in persons with epilepsy who were <50 years of age.MethodsThe study was a population-based retrospective cohort of all Danish citizens with and without epilepsy 1 to 49 years of age during 2007 to 2009. Information on all deaths was retrieved from the Danish Cause of Death Registry, autopsy reports, death certificates, and the Danish National Patient Registry. The primary cause of death in persons with epilepsy was evaluated independently by 3 neurologist, 1 neuro-pediatrician, and 2 cardiologists. In case of uncertainty, a pathologist was consulted. All deaths were classified as either epilepsy related or not epilepsy related, and the underlying causes or modes of death were compared between persons with and without epilepsy.ResultsDuring the study period, 700 deaths were identified in persons with epilepsy, and 440 (62.9%) of these were epilepsy related, 169 (38%) directly related to seizures and 181 (41%) due to an underlying neurologic disease. Sudden unexpected death in epilepsy accounted for 80% of deaths directly related to epilepsy. Aspiration pneumonia was the cause of death in 80% of cases indirectly related to epilepsy. Compared with the background population, persons with epilepsy had a nearly 4-fold increased all-cause mortality (adjusted mortality hazard ratio 3.95 [95% confidence interval [CI] 3.64–4.27], p < 0.0001) and a higher risk of dying of various underlying causes, including alcohol-related conditions (hazard ratio 2.91 [95% CI 2.23–3.80], p < 0.0001) and suicide (hazard ratio 2.10 [95% CI 1.18–3.73], p = 0.01).DiscussionThe newly proposed classification for mortality in persons with epilepsy was useful in an unselected nationwide cohort. It helped in classifying unnatural causes of death as epilepsy related or not and in identifying potentially preventable deaths. The leading causes of premature mortality in persons <50 years of age were related to epilepsy and were thus potentially preventable by good seizure control.
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