Neonatal Palliative Care-alice's Journey
Palliative Therapy; Bereavement; Bereavement Support; Child; Doctor Patient Relation; Holistic Care; Human; Infant; Infant Newborn; Medical Staff; Memory; Newborn; Newborn Intensive Care; Nursing Staff; Palliative Care; Patient Referral; Pilot Projects; Sibling; Terminal Care
Background: CHAS and NHS Lothian undertook a pilot project to review how joint working could enhance neonatal palliative care services' for families and staff. This case illustrates how collaborative working can enhance families' choices and experiences for their baby's end of life care. Aim: CHAS staff would work jointly with neonatal unit staff to deliver individualised, high quality palliative, end of life and bereavement care for babies', siblings and their families. Approach: When the neonatal team agreed that Alice had palliative care needs, a referral was made to CHAS.AA CHAS Family Support team member and the South East and Tayside (SEAT) Diana Children's Nurse agreed to work with the family and staff. Emotional and family support was provided and end of life wishes and choices were explored. The family were helped to capture memories and plans were made to help the family achieve their wish of taking Alice home to die. Outcomes: When neonatal intensive care was no longer in Alice's best interest, CHAS were able to offer choice and holistic care to the whole family. Alice's wider family were involved in memory making activities which provided them all with precious keepsakes and positive memories. With collaborative working between CHAS, NHS nursing staff, medical staff and the neonatal transport team, the family's wishes for end of life care which included taking Alice home to die were achieved. A Ongoing bereavement support for the family is available from CHAS. Conclusion: Collaborative working provides the opportunity for enhanced end of life care and support. With the support from CHAS, Alice was taken home to die and spent the last hour of her life in the loving care of her family for her first and last time in her own home.
Rodger E; Halkett C; Murdoch E
Palliative Medicine
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).
https://doi.org/10.1177/0269216316631462
Neonatal Death In The Emergency Department: When End-of-life Care Is Needed At The Beginning Of Life
Emergency Ward; Newborn Death; Terminal Care; Bereavement; Doctor Patient Relation; Family; Human; Infant; Newborn; United States
The death of a neonate is devastating for all involved. Each year, critically ill neonates present to emergency departments across the United States. These infants require acute medical interventions with a goal of stabilization. Despite these efforts, hundreds of infants die every year in emergency departments across the United States. Emergency care providers, unaccustomed to providing neonatal end-of-life care, may feel unsure about how to best care for families during resuscitative measures and after neonates die. There is literature to suggest that increased knowledge and advance preparation can calm fears of providers caring for patients in such tragic situations. We aim to provide in this article a broad overview of a variety of topics related to neonatal death and bereavement care. Copyright © 2016 Elsevier Inc.
Fry JT; Henner N
Clinical Pediatric Emergency Medicine
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).
10.1016/j.cpem.2016.04.001
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
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).
10.1111/hex.12078
The role of the courts in disagreements over the care of seriously ill babies
Experimental Therapy; Hospitalized Child; Legislation And Jurisprudence; Human; Infant; Long Term Care; Newborn; Terminal Care; Treatment Outcome; United Kingdom
Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.
Griffith R
British Journal Of Nursing
2017
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<a></a> <a href="http://doi.org/10.12968/bjon.2017.26.15.894" target="_blank" rel="noreferrer">10.12968/bjon.2017.26.15.894</a>
Cultural Influences in Pediatric Cancer from Diagnosis to Cure/End of Life
Adaptation; Caregivers/px [psychology]; Cultural Characteristics; Neoplasms/px [psychology]; Patients/px [psychology]; Survivors/px [psychology]; Adolescent; Adult; Child; Humans; Infant; Middle Aged; Newborn; Preschool; Psychological
OBJECTIVE: To review the literature on cultural factors influencing clinical care and family management of pediatric cancer. METHODS: A literature review including 72 articles related to cultural issues in pediatric cancer was conducted. Information was organized around several clinically driven themes. RESULTS: Cultural factors influenced many aspects of the cancer experience including illness representations, reaction to diagnosis, illness disclosure patterns, complementary and alternative medicine use, management of medical procedures, coping strategies, and end of life issues. CONCLUSION: Increased awareness of cultural factors is needed to improve clinical care and reduce health disparities. Specific strategies to approach cultural differences are provided to enhance patient and family care from diagnosis to cure/end of life.
Gray WN; Szulczewski LJ; Regan SMP; Williams JA; Pai AL
Journal Of Pediatric Oncology Nursing
2014
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<a href="http://doi.org/10.1177/1043454214529022" target="_blank" rel="noreferrer noopener">10.1177/1043454214529022</a>
Disparities in the intensity of end-of-life care for children with cancer
Childhood Cancer; Health Care Disparity; Terminal Care; Adolescent; Adult; Article; Cancer Chemotherapy; Caucasian; Child; Childhood Mortality; Cohort Analysis; Controlled Study; Demography; Female; Hematologic Malignancy; Hemodialysis; Hospital Admission; Hospital Mortality; Human; Infant; Intensive Care Unit; Intubation; Major Clinical Study; Male; Newborn; Population Research; Priority Journal; Resuscitation; Retrospective Study
BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer. METHODS: By using the California Office of Statewide Health Planning and Development administrative database, we performed a population-based analysis of patients with cancer aged 0 to 21 who died between 2000 and 2011. Rates of and sociodemographic and clinical factors associated with previously-defined end-of-life intensity indicators were determined. The intensity indicators included an intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis) within 30 days of death, intravenous chemotherapy within 14 days of death, and hospital death. RESULTS: The 3732 patients were 34% non-Hispanic white, and 41% had hematologic malignancies. The most prevalent intensity indicators were hospital death (63%) and ICU admission (20%). Sixty-five percent had >=1 intensity indicator, 23% >=2, and 22% >=1 intense medical intervention. There was a bimodal association between age and intensity: Ages <5 years and 15 to 21 years was associated with intense care. Patients with hematologic malignancies were more likely to have high-intensity end-of-life care, as were patients from underrepresented minorities, those who lived closer to the hospital, those who received care at a nonspecialty center (neither Children's Oncology Group nor National Cancer Institute Designated Cancer Center), and those receiving care after 2008. CONCLUSIONS: Nearly two-thirds of children who died of cancer experienced intense end-of-life care. Further research needs to determine if these rates and disparities are consistent with patient and/or family goals.
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Pediatrics
2017
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<a href="http://doi.org/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">10.1542/peds.2017-0671</a>10.1542/peds.2017-0671
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>
Addressing the continuum of maternal and newborn care in Ghana: implications for policy and practice
Infant Health; Community Health Services/organization & Administration; Continuity Of Patient Care/organization & Administration; Delivery; Developing Countries; Female; Ghana; Humans; Infant; Maternal-child Health Services/organization & Administration; Maternal Mortality; Newborn; Obstetric/methods; Perinatal Mortality; Pregnancy
Although the past decade has brought global reductions in maternal, infant and child mortality, many low-resource settings have failed to make significant gains relative to their high-income counterparts. In Ghana, nearly 50% of under-five mortality in 2014 could be attributed to deaths during the first 28 days after birth. This article analyses the data across a mixed-methods study of the factors impacting maternal and neonatal care in northern Ghana. The stillbirth and neonatal death study (SANDS) was conducted in 2010 and included both quantitative (N = 20 497) and qualitative data collection (N = 253) to explore the issues associated with the continuum of reproductive health care. Findings were compared against an adaptation of the WHO/UNICEF framework for integrated maternal and newborn care and used to generate concrete recommendations for clinicians, policymakers and programmers across the continuum of care, from pregnancy through delivery and postnatal care. SANDS elucidated epidemiological trends: 40% of neonatal deaths occurred on the first day after birth, and the leading causes of early neonatal mortality were birth asphyxia/injury, infection and complications of prematurity. Qualitative data reflect findings along two axes-community to facility-based care, and pre-pregnancy through the postnatal period. Resulting recommendations include the need to improving clinicians' understanding of and sensitization to local traditional practices, the need for policies to better address quality of care and coordination of training efforts, and the need for comprehensive, integrated programmes that ensure continuity of care from pre-pregnancy through the post-partum period. SANDS illustrates complex medical-social-cultural knowledge, attitudes and practices that span the reproductive period in rural northern Ghana. Data illustrate that not only are the first few days of life critical in infant survival but also there are significant social and cultural barriers to ensuring that mothers and their newborns are cared for in a timely, evidence-based manner.
Engmann CM; Hodgson A; Aborigo R; Adongo PL; Moyer CA
Health Policy And Planning
2016
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<a href="http://doi.org/10.1093/heapol/czw072" target="_blank" rel="noreferrer">10.1093/heapol/czw072</a>
Palliative care in the neonatal intensive care unit: An Indian experience
Infant; Intensive Care Units; Neonatal; Newborn; Palliative Care -- Psychosocial Factors -- India
The survival of newborn babies born with various problems has improved with the access to life sustaining technologies. Despite this, death in the neonatal intensive care unit (NICU) is an inevitable reality. For babies suffering from life limiting illnesses, the health care team has a duty to alleviate the physical suffering of the baby and to support the family with sensitive communication. Palliative care is a multidisciplinary approach to relieve the physical, psycho-social, and spiritual suffering of patients and their families. Palliative care provision in the Indian NICU settings is insufficient at present. In this paper we attempt to “build a case” for palliative care in the Indian NICU setting.
Ghoshal A; Damani A; Muckaden MaryAnn
Journal Of Neonatal Nursing
2016
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<a href="http://doi.org/10.1016/j.jnn.2016.09.002" target="_blank" rel="noreferrer">10.1016/j.jnn.2016.09.002</a>
Reducing Perinatal Mortality in Nepal Using Helping Babies Breathe
Quality Improvement; Female; Guideline Adherence; Humans; Infant; Nepal/epidemiology; Newborn; Perinatal Death/prevention & Control; Perinatal Mortality/trends; Pregnancy; Resuscitation/education/standards/utilization; Stillbirth/epidemiology
BACKGROUND AND OBJECTIVE: Newborns are at the highest risk of dying around the time of birth, due to intrapartum-related complications. Our study's objective was to improve adherence to the Helping Babies Breathe (HBB) neonatal resuscitation protocol and reduce perinatal mortality by using a quality improvement cycle (QIC) in a tertiary hospital in Nepal. METHODS: The HBB QIC was implemented through a multifaceted approach, including the formation of quality improvement teams; development of quality improvement goals, objectives, and standards; HBB protocol training; weekly review meetings; daily skill checks; use of self-evaluation checklists; and refresher training. A cohort design, including a nested case-control study was used to measure changes in clinical outcomes and adherence to the resuscitation protocol through video recording, before and after implementation of the QIC. RESULTS: The intrapartum stillbirth rate decreased from 9.0 to 3.2 per thousand deliveries, and first-day mortality from 5.2 to 1.9 per thousand live births after intervention, demonstrating a reduction of approximately half in the odds of intrapartum stillbirth (adjusted odds ratio [OR] 0.46, 95% confidence interval [CI] 0.32-0.66) and first-day mortality (adjusted OR 0.51, 95% CI 0.31-0.83). After intervention, the odds of inappropriate use of suction and stimulation decreased by 87% (OR 0.13, 95% CI 0.09-0.17) and 62% (OR 0.38, 95% CI 0.29-0.49), respectively. Before intervention, none of the infants received bag-and-mask ventilation within 1 minute of birth, compared with 83.9% of infants after. CONCLUSIONS: The HBB QIC reduced intrapartum stillbirth and first-day neonatal mortality and led to use of suctioning and stimulation more frequently. The HBB QIC requires further testing in primary settings across Nepal.
Kc A; Wrammert J; Clark RB; Ewald U; Vitrakoti R; Chaudhary P; Pun A; Raaijmakers H; Malqvist M
Pediatrics
2016
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<a href="http://doi.org/10.1542/peds.2015-0117" target="_blank" rel="noreferrer">10.1542/peds.2015-0117</a>
End-of-life decisions in perinatal care: A view from health-care providers in Mexico
Attitude Of Health Personnel;decision Making;perinatal Care;terminal Care/psychology; Abortion; Adult; Aged; Attitude To Death; Euthanasia; Female; Fetal Diseases; Humans; Induced/psychology; Infant; Male; Mexico; Middle Aged; Newborn; Nurses/psychology; Palliative Care/psychology; Passive/psychology; Perinatal Death; Physicians/psychology; Pregnancy; Religion; Social Workers/psychology; Young Adult
OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student's t tests. RESULTS: When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alternative. Those who opted for palliative care aimed to diminish suffering and those who opted for intensive care intended to protect life or sanctity of life. There was poor knowledge about the laws that regulate these decisions. CONCLUSIONS: Although there is no consensus on what decisions should be taken with severely ill fetuses or neonates, most participants considered palliative care as the first option, but feticide or induced neonatal death was not ruled out.
Grether P; Lisker R; Loria A; Alvarez-del-Rio A
Salud Publica De Mexico
2015
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/26679311" target="_blank" rel="noreferrer">26679311</a>
Pediatric Deaths Attributed to Complex Chronic Conditions over 10 Years in Korea: Evidence for the Need to Provide Pediatric Palliative Care
cause of death; Child; Children's Hospice; complex chronic conditions; infant; Korea; Newborn; Only Child; Palliative Care; pediatric palliative care; Pediatrics; Terminal Care
BACKGROUND: Pediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in disease diagnosis and treatment, resources for PPC of children with serious illnesses are limited in Korea. This study aimed to investigate the scale, time trends, disease composition, regional distribution, and unmet needs of children dying from complex chronic conditions (CCCs). METHODS: We examined available information on children who died of CCCs from 2005 to 2014 using the cause of death statistics in Korea. RESULTS: There were 36,808 cases of pediatric deaths in Korea during that 10-year period, one-third (12,515 cases, 34.0%) of which were due to CCCs. In 2014, there were 1,044 cases of pediatric deaths due to CCCs (9.8 deaths per 100,000 children) in Korea. The rate of pediatric deaths due to CCCs has declined over this 10-year period. Among CCCs, malignancy was the most common cause of death overall, as well as in children and adolescents, whereas neonatal disorders were the most common cause of death in infants. Although over 1,000 children die from chronic illnesses each year, there are no hospitals or institutes in Korea that meet the minimum standards for specialized PPC. CONCLUSION: To improve the quality of life of children suffering from CCCs and to support their families who face enormous distress, children with CCCs should be able to access adequate palliative care services. Health authorities should consider supporting the establishment of PPC centers and increasing PPC accessibility in Korea.
Kim MS; Lim NG; Kim HJ; Kim C; Lee JY
Journal Of Korean Medical Science
2018
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<a href="http://doi.org/10.3346/jkms.2018.33.e1" target="_blank" rel="noreferrer">10.3346/jkms.2018.33.e1</a>
Impact of holding the baby following stillbirth on maternal mental health and well-being: findings from a national survey
Bereavement; care practice; hold; infant contact; Stillbirth; touch; adolescent; Adult; Anxiety/epidemiology; Cross-Sectional Studies; Depression/epidemiology; England; Family Conflict/psychology; Female; gestational age; Health Surveys; Humans; infant; Mother-Child Relations/ psychology; Mothers/ psychology; Newborn; Postpartum Period/ psychology; Post-traumatic; Post-Traumatic/epidemiology; Pregnancy; Qualitative Research; Self-Fertilization; self report; stillbirth; Stillbirth/ psychology; Stress Disorders; Touch; Young Adult
OBJECTIVES: To compare mental health and well-being outcomes at 3 and 9 months after the stillbirth among women who held or did not hold their baby, adjusting for demographic and clinical differences. DESIGN: Secondary analyses of data from a postal population survey. POPULATION: Women with a registered stillbirth in England in 2012. METHODS: 468 eligible responses were compared. Differences in demographic, clinical and care characteristics between those who held or did not hold their infant were described and adjusted for in subsequent analysis. Mental health and well-being outcomes were compared, and subgroup comparisons tested hypothesised moderating factors. OUTCOME MEASURES: Self-reported depression, anxiety, post-traumatic stress disorder (PTSD) symptoms and relationship difficulties. RESULTS: There was a 30.2% response rate to the survey. Most women saw (97%, n=434) and held (84%, n=394) their baby after stillbirth. There were some demographic differences with migrant women, women who had a multiple birth and those whose pregnancy resulted from fertility treatment being less likely to hold their baby. Women who held their stillborn baby consistently reported higher rates of mental health and relationship difficulties. After adjustment, women who held their baby had 2.12 times higher odds (95% CI 1.11 to 4.04) of reporting anxiety at 9 months and 5.33 times higher odds (95% CI 1.26 to 22.53) of reporting relationship difficulties with family. Some evidence for proposed moderators was observed with poorer mental health reported by women who had held a stillborn baby of <33 weeks' gestation, and those pregnant at outcome assessment. CONCLUSIONS: This study supports concern about the negative impact of holding the infant after stillbirth. Results are limited by the observational nature of the study, survey response rate and inability to adjust for women's baseline anxiety. Findings add important evidence to a mixed body of literature.
Redshaw M; Hennegan JM; Henderson J
Bmj Open
2016
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<a href="http://doi.org/10.1136/bmjopen-2015-010996" target="_blank" rel="noreferrer">10.1136/bmjopen-2015-010996</a>
Rising national prevalence of life-limiting conditions in children in England.
Child; Female; Humans; infant; Male; Young Adult; Palliative Care; Adult; Prevalence; adolescent; Preschool; infant; Newborn; retrospective studies; England/epidemiology; Critical Illness/epidemiology; Terminally Ill/statistics & numerical data
BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the burden of these conditions. METHODS: Children (0-19 years) with LLCs were identified within an English Hospital Episode Statistics dataset (2000/2001-2009/2010) by applying a customized coding framework of the International Classification of Diseases, 10th Revision, disease codes. Prevalence per 10 000 population (0-19 years) was calculated by age, diagnostic group, ethnicity, deprivation, and region for each year. RESULTS: The Hospital Episode Statistics extract contained 175 286 individuals with 1 or more LLCs of which congenital anomalies were the most common (31%). Prevalence increased over 10 years from 25 to 32 per 10 000 population. Prevalence in the South Asian (48 per 10 000); black (42 per 10 000); and Chinese, mixed, and "other" (31 per 10 000) populations were statistically significantly higher compared with the white population (27 per 10 000). Prevalence shows an inverse J-shaped relationship with 5 categories of deprivation, with the highest prevalence in the most deprived areas and the lowest in the second least deprived. CONCLUSIONS: In 2010, the prevalence of LLCs in children in England was double the previously reported estimates and had increased annually in all areas over the past decade. This clearly identifies an escalating need for specialist pediatric palliative care services. When planning services for these increasing needs, the excess prevalence in ethnic minority groups, especially in deprived areas, needs to be considered.
Fraser LK; Miller M; Hain R; Norman P; Aldridge J; McKinney PA; Parslow RC
Pediatrics
2012
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Journal Article
<a href="http://doi.org/10.1542/peds.2011-2846" target="_blank" rel="noreferrer">10.1542/peds.2011-2846</a>
Survival without disability to age 5 years after neonatal caffeine therapy for apnea of prematurity
Child; Female; Humans; infant; Male; Follow-Up Studies; Treatment Outcome; Survival Analysis; Odds Ratio; Child Development; Incidence; Preschool; infant; Newborn; Premature; Apnea/drug therapy; Blindness/epidemiology/etiology/prevention & control; Caffeine/adverse effects/therapeutic use; Central Nervous System Stimulants/adverse effects/therapeutic use; Cerebral Palsy/epidemiology; Cognition Disorders/epidemiology/etiology/prevention & control; Deafness/epidemiology/etiology/prevention & control; Developmental Disabilities/epidemiology/etiology/prevention & control; N2N; Very Low Birth Weight
CONTEXT: Very preterm infants are prone to apnea and have an increased risk of death or disability. Caffeine therapy for apnea of prematurity reduces the rates of cerebral palsy and cognitive delay at 18 months of age. OBJECTIVE: To determine whether neonatal caffeine therapy has lasting benefits or newly apparent risks at early school age. DESIGN, SETTING, AND PARTICIPANTS: Five-year follow-up from 2005 to 2011 in 31 of 35 academic hospitals in Canada, Australia, Europe, and Israel, where 1932 of 2006 participants (96.3%) had been enrolled in the randomized, placebo-controlled Caffeine for Apnea of Prematurity trial between 1999 and 2004. A total of 1640 children (84.9%) with birth weights of 500 to 1250 g had adequate data for the main outcome at 5 years. MAIN OUTCOME MEASURES: Combined outcome of death or survival to 5 years with 1 or more of motor impairment (defined as a Gross Motor Function Classification System level of 3 to 5), cognitive impairment (defined as a Full Scale IQ<70), behavior problems, poor general health, deafness, and blindness. RESULTS: The combined outcome of death or disability was not significantly different for the 833 children assigned to caffeine from that for the 807 children assigned to placebo (21.1% vs 24.8%; odds ratio adjusted for center, 0.82; 95% CI, 0.65-1.03; P = .09). The rates of death, motor impairment, behavior problems, poor general health, deafness, and blindness did not differ significantly between the 2 groups. The incidence of cognitive impairment was lower at 5 years than at 18 months and similar in the 2 groups (4.9% vs 5.1%; odds ratio adjusted for center, 0.97; 95% CI, 0.61-1.55; P = .89). CONCLUSION: Neonatal caffeine therapy was no longer associated with a significantly improved rate of survival without disability in children with very low birth weights who were assessed at 5 years.
Schmidt B; Anderson PJ; Doyle LW; Dewey D; Grunau RE; Asztalos EV; Davis PG; Tin W; Moddemann D; Solimano A; Ohlsson A; Barrington KJ; Roberts RS; Trial Investigators Caffeine for Apnea of Prematurity (CAP)
Jama
2012
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Journal Article
<a href="http://doi.org/10.1001/jama.2011.2024" target="_blank" rel="noreferrer">10.1001/jama.2011.2024</a>
Indicators of family resilience after the death of a child
Child; Female; Humans; infant; Male; Adult; Parent-Child Relations; Parents; Anecdotes as Topic; Middle Aged; Self Concept; Attitude to Death; social support; Social Adjustment; Survivors; Self-Help Groups; Belgium; Preschool; Adaptation; Psychological; Newborn; Grief; sibling bereavement; Resilience; Object Attachment
The aim of this study was to identify and describe resilience qualities in families after losing a child. Questionnaires, including an open-ended question, were utilized to collect data independently from the parents and siblings of the deceased in 89 Belgian families. The results indicate that family strengths in general, and commitment to the family in particular, helped the families' adaptation after the loss. In addition, the adaptation process after the loss was aided if the family members viewed the crisis as a challenge. Both the siblings and the parents indicated that the extent to which a family experienced support from the community was directly related to family adaptation after the loss. Redefining the situation and utilizing social support from friends and family were underlined as effective family coping strategies. The findings could be used in interventions to promote family resilience, thereby affirming the reparative potential of families.
Greeff AP; Vansteenwegen A; Herbiest T
Omega
2011
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Journal Article
<a href="http://doi.org/10.2190/om.63.4.c" target="_blank" rel="noreferrer">10.2190/om.63.4.c</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>
Annual summary of vital statistics: 2008
Child; Female; Humans; infant; Male; United States; Young Adult; Adult; adolescent; Preschool; infant; Newborn; Maternal Age; Age Distribution; Infant Mortality/trends; Mortality/trends; Birth Rate/trends; Vital Statistics
The number of births in the United States decreased between 2007 and 2008 (preliminary estimate: 4 251 095). Birth rates declined among all women aged 15 to 39 years; the decrease among teenagers reverses the increases seen in the previous 2 years. The total fertility rate decreased 2% in 2008 to 2085.5 births per 1000 women. The proportion of all births to unmarried women increased to 40.6% in 2008, up from 39.7% in 2007. The 2008 preterm birth rate was 12.3%, a decline of 3% from 2007. In 2008, 32.3% of all births occurred by cesarean delivery, up nearly 2% from 2007. Twin and triplet birth rates were unchanged. The infant mortality rate was 6.59 infant deaths per 1000 live births in 2008 (significantly lower than the rate of 6.75 in 2007). Life expectancy at birth was 77.8 years in 2008. Crude death rates for children aged 1 to 19 years decreased by 5.5% between 2007 and 2008. Unintentional injuries and homicide were, respectively, the first and second leading causes of death in this age group. These 2 causes of death jointly accounted for 51.2% of all deaths of children and adolescents in 2008. This annual article is a long-standing feature in Pediatrics and provides a summary of the most current vital statistics data for the United States. We also include a special feature this year on the differences in cesarean-delivery rates according to race and Hispanic origin.
Mathews TJ; Minino AM; Osterman MJ; Strobino DM; Guyer B
Pediatrics
2011
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Journal Article
<a href="http://doi.org/10.1542/peds.2010-3175" target="_blank" rel="noreferrer">10.1542/peds.2010-3175</a>
Quality of life for children with life-limiting and life-threatening illnesses: description and evaluation of a regional, collaborative model for pediatric palliative care
adolescent; Child; Female; Humans; infant; Male; Palliative Care; Terminal Care; referral and consultation; Pediatrics; Health Personnel; Program Evaluation; Continuity of Patient Care; Biomedical Research; Inservice Training; District of Columbia; quality of life; Preschool; Newborn; PEDI Study; Quality of Health Care
The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its true potential. This article details the evolution of a regional, shared approach to address these issues, the District of Columbia Pediatric Palliative Care Collaboration (DCPPCC), and includes its evolution, preliminary clinical results, and assessment of barriers encountered.
Rogers SK; Gomez CF; Carpenter P; Farley J; Holson D; Markowitz M; Rood B; Smith K; Nigra Peter
The American Journal Of Hospice & Palliative Care
2011
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Journal Article
<a href="http://doi.org/10.1177/1049909110380594" target="_blank" rel="noreferrer">10.1177/1049909110380594</a>
Place of death and palliative care following discharge from paediatric intensive care units
Child; Female; Humans; infant; Male; Intensive Care Units; Cohort Studies; adolescent; Preschool; infant; Newborn; Hospitalization/statistics & numerical data; Palliative Care/statistics & numerical data; location of death; Pediatric/statistics & numerical data; child mortality; Great Britain/epidemiology; Home Care Services/statistics & numerical data; Hospice Care/statistics & numerical data; Patient Discharge/statistics & numerical data; Referral and Consultation/statistics & numerical data
OBJECTIVE: To determine where children die following discharge from paediatric intensive care units (PICUs) in Great Britain and to investigate if this varies by discharge to palliative care. DESIGN: National cohort of PICU admissions linked to Office of National Statistics death certificate data. SETTING: 31 PICUs in Great Britain. PARTICIPANTS: A cohort of 35 383 children admitted to PICUs between 1 November 2002 until 25 January 2007. MAIN OUTCOME MEASURES: Place of death by palliative care discharge status. RESULTS: 2346 (6.6%) deaths occurred after discharge during the study period, which is more than 10 times the normal child population mortality of 6.0 per 1000. Discharge to palliative care resulted in fewer deaths in hospital (44.1%) (compared to non-palliative care discharges (77.7%)), a greater proportion of deaths were at home (33.3% compared to non-palliative discharges 16.1%) and in a hospice (22.5% compared to non-palliative discharges 5.8%). CONCLUSIONS: Children referred to palliative care services at discharge from PICU are more likely to die in the community (home or hospice) than children not referred to palliative care.
Fraser LK; Miller M; Draper ES; McKinney PA; Parslow RC; Paediatric Intensive Care Audit Network
Archives Of Disease In Childhood
2011
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Journal Article
<a href="http://doi.org/10.1136/adc.2009.178269" target="_blank" rel="noreferrer">10.1136/adc.2009.178269</a>
Neonatal end-of-life spiritual support care
Female; Humans; infant; Pregnancy; Parent-Child Relations; Attitude to Death; Nurse's Role; Spirituality; bereavement; Newborn; Parents/psychology; Nursing Assessment/methods; Palliative Care/methods/psychology; Neonatal Nursing/methods; Pregnancy Outcome/psychology
The death of an infant is a profound loss that may complicate, disrupt, or end relationships between parents; and lead to maladaptive grieving, long-term decreased quality of life, and symptoms related to psychological morbidity. Facing neonatal loss is frequently experienced as traumatic assault on parents' spiritual and existential world of meaning. This article highlights the importance of supporting parents through loss by providing comprehensive care that focuses not only on the neonate's physical needs, but also addresses parents' and families' spiritual, religious, and existential needs. Our objective is to increase practitioners' awareness of spiritual and existential distress and to provide strategies to address such needs, particularly at the end of life.
Rosenbaum JL; Smith JR; Zollfrank R
The Journal Of Perinatal & Neonatal Nursing
2011
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Journal Article
<a href="http://doi.org/10.1097/JPN.0b013e318209e1d2" target="_blank" rel="noreferrer">10.1097/JPN.0b013e318209e1d2</a>
Care goals and decisions for children referred to a pediatric palliative care program
Child; Female; Humans; infant; Male; Young Adult; Palliative Care; Pediatrics; Goals; Health Status; quality of life; adolescent; Preschool; decision making; infant; referral and consultation; Newborn; care goals; Life-limiting conditions; Therapeutic Processes; treatment decision making
OBJECTIVE: To describe goals of care for children with complex, life-limiting conditions and to assess the variables that may influence these goals. METHODS: Goals of care were elicited from the parents and children with complex, life-limiting conditions during initial palliative care consultation. Data abstracted included: diagnoses, demographics, time from diagnosis until initial palliative care consult, spirituality status, resuscitative status, and disposition at discharge. Goals of care were categorized into one of four quality-of-life domains: 1) physical health and independence, 2) psychological and spiritual, 3) social, and 4) environment. Summary statistics were prepared and comparisons were made between the four categories of goals. Descriptive statistics were utilized to explore potential associations with a decision to pursue full medical support. RESULTS: One hundred and forty goals of care were obtained from 50 patients/parents. The median patient age was 4.6 years. Thirty-seven patients had significant cognitive delay/impairment. Neuromuscular disorders accounted for more than half of the diagnoses. Forty-nine patients identified at least one goal pertaining to physical health and independence. This was significantly more than any other category (p < 0.0001). Thirty-three of the 50 patients (66%) opted for full medical support at the time of initial consult. CONCLUSIONS: Children with complex, life-limiting conditions and their families referred to a palliative care service commonly verbalize goals related to health maintenance and independence. Anticipating this expectation may foster communication and improve patient care.
Tamburro R F; Shaffer ML; Hahnlen NC; Felker P; Ceneviva GD
Journal Of Palliative Medicine
2011
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Journal Article
<a href="http://doi.org/10.1089/jpm.2010.0450" target="_blank" rel="noreferrer">10.1089/jpm.2010.0450</a>
Whom are we comforting? An analysis of comfort medications delivered to dying neonates
Humans; infant; Intensive Care Units; Attitude of Health Personnel; Medical Futility; Prognosis; Neonatal; Stress; Newborn; retrospective studies; ICU Decision Making; Palliative Care/methods; Pain/drug therapy; Physician Assisted Dying PAD; Analgesics/administration & dosage; Cardiopulmonary Resuscitation/methods; Decision Making/ethics; Hypnotics and Sedatives/administration & dosage; Neuromuscular Blocking Agents/administration & dosage; NICU; Psychological/drug therapy
Janvier A; Meadow W; Leuthner SR; Andrews B; Lagatta J; Bos Arend; Lane L; Verhagen AAE
The Journal Of Pediatrics
2011
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Journal Article
<a href="http://doi.org/10.1016/j.jpeds.2011.01.022" target="_blank" rel="noreferrer">10.1016/j.jpeds.2011.01.022</a>
Tracking neonatal nosocomial infection: the continuous quality improvement cycle
Humans; infant; Incidence; infant; Newborn; Cross Infection/epidemiology/prevention & control; Infant Care/methods/organization & administration/standards; Infection Control/methods/organization & administration/standards; Quality Improvement/organization & administration/standards
Neonatal nosocomial infection (NNI) is a major complication of neonatal care, increasing mortality, morbidity and the costs of healthcare. Management of NNI involves attention to many details of care, creating a culture of change within a neonatal unit and the implementation of a continuous quality improvement cycle. This paper describes the initiation of a quality improvement team (QIT) and the aspects of infection control bundles that have been implemented. The setting was a single large perinatal centre over a seven-year period. Statistical tracking of NNI in exceedingly premature infants was by control charting methodology. A steady and statistically significant decline in NNI rates from 13 to seven episodes per 1000 bed-days (censored to day 35) for infants less than 29 weeks of gestation has been recorded. A multidisciplinary QIT has managed the implementation of measures designed to reduce NNI in the unit. These have included raising awareness of the need for asepsis, improved hand hygiene, increased vigilance in using central lines, monitoring blood culture collection techniques and improving the environment. We believe such measures in conjunction with the positive feedback obtained from charting have been responsible for the steady decline in NNI. This study is one of the first to close the QIT loop and to demonstrate statistical improvement in NNI through the introduction of specific care bundles.
Gill AW; Keil AD; Jones C; Aydon L; Biggs S
The Journal Of Hospital Infection
2011
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Journal Article
<a href="http://doi.org/10.1016/j.jhin.2010.12.018" target="_blank" rel="noreferrer">10.1016/j.jhin.2010.12.018</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>
Prognosis for survival and improvement in function in children with severe developmental disabilities
Child; infant; Survival Rate; Cohort Studies; Prognosis; Follow-Up Studies; Severity of Illness Index; Preschool; P.H.S.; U.S. Gov't; infant; Newborn; Human; Age Distribution; Support; California/epidemiology; Developmental Disabilities/mortality
OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The outcomes studied were survival and improvement in condition. Methods were used to overcome limitations in previously published work on the same California data base. Of the 11,912 children who received services from the California Department of Developmental Services between January 1980 and December 1993, we focused on three cohorts defined according to mobility and need for tube feeding. RESULTS: Children who were tube fed and unable to lift their heads by ages 3 to 12 months were at high risk for early death, with a median remaining life expectancy of 3.2 years. Of those who survived an additional 2 years, the condition of about one third improved. A substantial majority of those who either showed improvement or died had done so by that age. CONCLUSION: By age 5 years, the prognoses for survival and improvement have to a large extent been clarified. For children who survive to age 5 years, even those in the lowest functioning cohort have a 60% chance of surviving an additional 5 years. Detailing the probabilities of various outcomes at various ages should be useful to parents, pediatricians, and others concerned with children with developmental disabilities.
1997
Strauss D; Ashwal S; Shavelle R; Eyman RK
Journal Of Pediatrics
1997
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Journal Article
Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood
Child; Cross-Sectional Studies; infant; Family; Adult; Prevalence; Parent-Child Relations; Mental Health; adolescent; Preschool; Non-U.S. Gov't; infant; Newborn; Human; Support; Great Britain/epidemiology; Child Welfare/statistics & numerical data; Chronic Disease/epidemiology/psychology; Disabled Children/psychology/statistics & numerical data
OBJECTIVE: To determine the prevalence of non-malignant life-threatening illness in childhood and associated morbidity in the affected child and their family members. DESIGN: Cross-sectional survey. SETTING: Bath Clinical Area (total population 411,800). SUBJECTS: Children aged 0-19 years. RESULTS: One hundred and twenty-three children were identified, giving a prevalence of 1.2/1000 children. Morbidity assessed in 93 children showed 60% in pain or discomfort, 35% unable to walk and 25% with severe cognitive impairment. Mental health problems were found in 54% of mothers and 30% of fathers, and significant emotional and behavioural problems in 24% of healthy siblings. CONCLUSIONS: Non-malignant life-threatening illness is more prevalent than reported in previous studies. Considerable morbidity is experienced by the child and their family. An individual and family approach is required. Key messages (1) The prevalence of non-malignant life-threatening illness is four times greater than previous estimates. (2) This group of conditions have significant implications for all family members. (3) Early comprehensive assessment and access to effective interventions may pre-empt later problems.
2001
Lenton S; Stallard P; Lewis M; Mastroyannopoulou K
Child: Care, Health And Development
2001
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Journal Article
Effect of severity of disability on survival in north east England cerebral palsy cohort
Female; infant; Male; Survival Rate; Cohort Studies; Prognosis; Risk Factors; Birth Weight; Non-U.S. Gov't; Newborn; cause of death; Human; Life Expectancy; Sex Distribution; Life Style; Support; England/epidemiology; Disability Evaluation; Cerebral Palsy/mortality
AIMS: To investigate the effect of motor and cognitive disabilities on the survival of people on the North of England Collaborative Cerebral Palsy Survey, and compare this with other published results. METHODS: The cerebral palsy cohort consists of 1960-1990 births in Northumberland, Newcastle, and North Tyneside health districts. Survival and cause of death were analysed in relation to data on birth, disabilities, and a unique measure of the impact of disability. RESULTS: Disability strongly influences survival. More than a third of those with a severe disability die before age 30. Fewer than a third of deaths are attributed to cerebral palsy on death certificates. Of those with severe cognitive disability, 63% live to age 35 (58% with severe ambulatory disability and 53% with severe manual disability), whereas at least 98% without severe disabilities live to age 35. The Lifestyle Assessment Score (LAS) allows a finer categorisation of impact of disability, and is strongly associated with survival: a ten point increase in LAS is associated with a doubling of the hazard rate. People who had LAS of at least 70, and had survived to age 5 have a 39% chance of dying before age 35. CONCLUSIONS: The majority of people with cerebral palsy attain adulthood. There appears to be more variation in survival rates associated with severe disability between regions of England, than between north east England, British Columbia, and California. Instantaneous risks of dying vary widely between England and California. This variation is not obviously attributable to differing rates of severe disability.
2000
Hutton JL; Colver AF; Mackie PC
Archives Of Disease In Childhood
2000
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Journal Article
The death of a twin
adolescent; Child; Female; Humans; infant; Male; Death; Fetal Death; Adult; Parent-Child Relations; social support; Child Psychology; Counseling; Preschool; Newborn; Grief; sibling bereavement; Guilt; Twins
Death or disability is much more common in multiple births than single children, especially in the perinatal period. Parents face particular problems in that their loss may be underestimated; their grieving may be impeded by the confusion between the live and the dead baby, and the constant reminder in the survivor may be painful. The surviving twin often suffers profoundly from the loss and may need lifelong support. The value of the twinship should always be respected.
1995-07
Bryan EM
Palliative Medicine
1995
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Journal Article
<a href="http://doi.org/10.1177/026921639500900303" target="_blank" rel="noreferrer">10.1177/026921639500900303</a>
Perinatal loss. A critique of current hospital practices
Female; Humans; infant; Male; Fetal Death; Grief; Parent-Child Relations; Professional-Family Relations; Hospitals; Clinical Protocols; Perinatology; bereavement; Caregivers/psychology; Newborn; Parents/psychology; Personnel; Hospital/psychology
Dramatic improvements in the hospital management of perinatal loss have taken place in the past 20 years. However, there has been no critical examination of current approaches. Four possible hazards of current hospital practice are described: 1) Institutionalization of bereavement: Instead of offering parents an empathic awareness of the unique dimensions of their perinatal loss, caregivers often interact according to detailed behavioral protocols. 2) Idealization of contact with the dead baby: This approach may equate actual physical contact with the dead child with the more complicated and variable process of mourning. 3) Homogenization of grief: Counselors tend to denigrate different grief responses by focusing on a preconceived grief reaction. Thus, they may mistakenly label many such reactions pathologic if they deviate from the rigidly prescribed "norm." 4) Lecturing the bereaved: Telling parents the "right" thing to do may deprive them of a crucial aspect of the process that empowers parents after they experience the helplessness associated with perinatal loss--that of making their own decisions. These problems are illustrated by a clinical vignette, and alternative approaches are explored.
1992
Leon IG
Clinical Pediatrics
1992
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Journal Article
<a href="http://doi.org/10.1177/000992289203100611" target="_blank" rel="noreferrer">10.1177/000992289203100611</a>
Can we use methadone for analgesia in neonates?
Child; Humans; infant; Adult; Analgesics; Methadone; Preschool; Newborn; Drug Tolerance; Analgesia/methods; Opioid/adverse effects
2001
Chana SK; Anand KJ
Archives Of Disease In Childhood. Fetal And Neonatal Edition
2001
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Journal Article
<a href="http://doi.org/10.1136/fn.85.2.f79" target="_blank" rel="noreferrer">10.1136/fn.85.2.f79</a>
Optimal pain relief in infants and children
Humans; infant; Pain Measurement; infant; Newborn; Pain/drug therapy; Analgesia/methods; Morphine/therapeutic use; Anesthesia/methods; Anesthetics/therapeutic use
1993
Burrows FA; Berde CB
Bmj (clinical Research Ed.)
1993
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Journal Article
<a href="http://doi.org/10.1136/bmj.307.6908.815" target="_blank" rel="noreferrer">10.1136/bmj.307.6908.815</a>
Your child is dead
Child; Female; Humans; infant; Male; Great Britain; Attitude of Health Personnel; Interviews as Topic; Questionnaires; Attitude to Death; Professional-Family Relations; Communication; Physicians; Nurses; Tissue and Organ Procurement; Tissue Donors; Preschool; bereavement; infant; Newborn; cause of death; Parents/psychology; France; Police
OBJECTIVE--To determine parent's views on how death of their children should have been handled. DESIGN--Retrospective questionnaire survey of parents who had experienced death of their child. SETTING--Charitable organisation of bereaved parents. SUBJECTS--150 bereaved parents, all members of the organisation, of whom 120 (80%) participated voluntarily in the study. MAIN OUTCOME MEASURES--Child's age; date and cause of death; details of person breaking the news and handling of the interview; time parents spent with dead child, their attitude to requests for organ donation, and follow up support received. RESULTS--122 children's deaths were described; the largest single group was due to road traffic accidents, 16 were suicides, and eight were murders. Twice as many interviews were rated as sympathetically or reasonably handled as badly or offensively handled (68 v 34). The interview ratings depended on the sensitivity and personal skills of the interviewers rather than on their previous contact or professional position; police were rated as more sympathetic than doctors and nurses. Of 109 respondents, 81 had seen their child's body, 44 of whom thought that sufficient time had been denied. Of the 28 parents who did not see the body, 17 subsequently stated their regret. In 82 parents organ donation had not been discussed. Only 16 parents recorded any follow up support from hospital staff and very few support at the time. CONCLUSIONS--The consistency of the responses suggests a serious need to revise the in service training and education of the police and health professionals in their approach to informing of death; organ donation should be discussed sensitively and parents allowed time with their dead child with fewer restrictions.
1991
Finlay I; Dallimore D
Bmj (clinical Research Ed.)
1991
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Journal Article
<a href="http://doi.org/10.1136/bmj.302.6791.1524" target="_blank" rel="noreferrer">10.1136/bmj.302.6791.1524</a>
Congenital disorder of glycosylation type Ia (CDG-Ia): phenotypic spectrum of the R141H/F119L genotype
Child; Female; Humans; infant; Male; Adult; Prognosis; Phenotype; adolescent; Preschool; infant; Q3 Literature Search; Newborn; Cerebellum/pathology; Liver Function Tests; Genotype; Facies; Ataxia/genetics/metabolism; Atrophy/genetics/metabolism; Carbohydrate-Deficient Glycoprotein Syndrome/genetics/metabolism; Cephalometry; Developmental Disabilities/genetics/metabolism; Failure to Thrive/genetics/metabolism; Glycosylation; Growth Disorders/genetics/metabolism; Seizures/genetics/metabolism
AIMS: To delineate common and variable features and outcome of children with congenital disorder of glycosylation type Ia (CDG-Ia) caused by the frequent R141H/F119L PMM2 genotype. METHODS: Clinical data on 25 patients (mean age 7.6 years, range 0-19) were analysed. RESULTS: All patients had an early presentation with severe feeding problems and failure to thrive, hypotonia, hepatic dysfunction, inverted nipples, and abnormal subcutaneous fat pads. Eighteen patients were hospitalised in the neonatal period. Developmental delay was obvious before age 6 months. During the first seven months mean standard deviation score (SDS) for weight and length decreased 2.7 (SD = 2) and 2.4 (SD = 2), respectively. Mental retardation, ataxia, muscular atrophy, and febrile seizures were consistent features after infancy. Variable features included pericardial effusions, afebrile seizures, and stroke like episodes. Computed tomography/magnetic resonance imaging of the brain was normal in two patients examined before 4 months of age, but 18 children examined after 3 months of age had cerebellar atrophy, and 10 children also had supratentorial atrophy. Subsequent imaging showed progression of the cerebellar and supratentorial atrophy in eight and four of 10 children, respectively. Mean head circumference SDS declined from zero to -1.9 SD from age 3 months to 5 years. Motor ability ranged from none to walking with a rolator, and vocabulary ranged from none to comprehensible speech. The overall mortality ascribed to CDG-Ia was 18%. CONCLUSION: Patients with the R141H/F119L genotype have an early uniform presentation including severe failure to thrive, but their functional outcome is variable. This genotype may well cause clinical manifestations in the severe end of the spectrum of CDG-Ia.
2001
Kjaergaard S; Schwartz M; Skovby F
Archives Of Disease In Childhood
2001
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Journal Article
<a href="http://doi.org/10.1136/adc.85.3.236" target="_blank" rel="noreferrer">10.1136/adc.85.3.236</a>
Natural history of trisomy 13
Female; Humans; infant; Male; Trisomy; Pregnancy; Adult; Prenatal Diagnosis; Longitudinal Studies; Incidence; Syndrome; Newborn; Chromosomes; Heart Defects; Human; Fetal Diseases/diagnosis; Congenital/diagnosis/genetics/mortality; England/epidemiology; Neural Tube Defects/diagnosis/genetics/mortality; Pair 13
The poor prognosis of patients with trisomy 13 has long been accepted and has been ascribed to brain and heart malformations. It has been suggested, however, that the long term survival is better than was previously thought and that cardiac surgery may be justified. This population based study reviews the incidence, antenatal diagnosis, spectrum of survival from congenital heart disease, and mode of death for patients with trisomy 13 in the Northern Health Region from 1985 to 1992. There was an observed prevalence at birth of 0.049/1000 live births and an expected prevalence, allowing for antenatal diagnosis, of 0.077. None of the cardiac lesions found would cause early death. The median survival in this series was four days; the longest survival was 3.5 months. The principal mode of death was apnoea in 14 of 16 children, irrespective of the presence of a cranial abnormality. In the light of these findings, cardiac surgery cannot be justified in patients with trisomy 13.
1994
Wyllie JP; Wright MJ; Burn J; Hunter S
Archives Of Disease In Childhood
1994
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.71.4.343" target="_blank" rel="noreferrer">10.1136/adc.71.4.343</a>
Morbidity and mortality in medium chain acyl coenzyme A dehydrogenase deficiency
Child; Humans; infant; Prognosis; Incidence; Morbidity; adolescent; Preschool; infant; Q3 Literature Search; Newborn; Lipid Metabolism; Acyl-CoA Dehydrogenase; New South Wales/epidemiology; Deficiency Diseases/epidemiology; Fatty Acid Desaturases/deficiency; Hemiplegia/complications; Inborn Errors/epidemiology/mortality
Medium chain acyl coenzyme A dehydrogenase (MCAD) deficiency presents with episodic fasting, hypoketotic hypoglycaemia, and coma. It is known to be potentially lethal, but the outlook for survivors is thought to be good. We reassessed all patients with MCAD deficiency diagnosed in New South Wales (population six million) to explore long term morbidity and mortality. There were 16 probands and two siblings were confirmed and two presumed to be affected. Assuming an incidence of 1:20,000 births, these represented about 22% of the total number of expected cases. Five (25%) of the 20 patients died aged 3 days-30 months, all during the first episode of illness. Seven others had only one episode and one affected sibling was asymptomatic. Eight had had significant neonatal symptoms. Only two had a significant, serious life threatening episode after diagnosis. Of 15 survivors, one has severe handicap after a single severe episode, and four, aged 9-17 years, have mild intellectual handicap. Eight (including six aged less than 7 years), have apparently normal development. Two are lost to follow up. Our study of unselected patients with MCAD deficiency from a defined population shows not only a substantial risk of death, but also of long term morbidity.
1994
Wilcken B; Hammond J; Silink M
Archives Of Disease In Childhood
1994
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.70.5.410" target="_blank" rel="noreferrer">10.1136/adc.70.5.410</a>
Studies on nutrition in severely neurologically disabled children in an institution
Child; Female; Humans; infant; Male; adolescent; Preschool; Nutritional Status; Newborn; Nervous System Diseases/complications; Brain Damage; Energy Intake; Epilepsy/complications; Mental Retardation/complications; Institutionalized; Nutrition Disorders/complications; Asphyxia Neonatorum/complications; Chronic/complications; Ferritin/blood; Growth Disorders/etiology; Hemoglobins/analysis; Selenium/blood; Vitamin D/blood; Vitamin E/blood
Severe neurological handicaps in children are frequently accompanied by growth retardation. We have studied 13 severely neurologically impaired children in an institution to see if their poor growth was related to a low intake of energy and nutrients, if this was reflected in biochemical nutritional parameters, and to modify their diet according to the results. The investigation showed low dietary intakes of energy and of several of the nutrients, with corresponding low Hb values and serum values of ferritin, selenium and vitamins E and D in some of the children. All the children were initially light for age, with catch-up growth after intervention. We conclude that severely disabled children are at high risk for under- and malnutrition, and that this may partly explain the growth retardation in the study group. To avoid the potential detrimental effects of malnutrition, it is important to aim at providing an optimal diet.
1996
Hals J; Ek J; Svalastog AG; Nilsen H
Acta Paediatrica
1996
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/10.1111/j.1651-2227.1996.tb13954.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1996.tb13954.x</a>
Physiological changes, plasma beta-endorphin and cortisol responses to tracheal intubation in neonates
Humans; infant; Drug Therapy; Analgesia; Blood Pressure; Heart Rate; beta-Endorphin/blood; Biomarkers of Pain; Newborn; Blood Glucose/metabolism; Oxygen/blood; Intubation; Hydrocortisone/blood; Combination; Alfentanil; Glycopyrrolate/therapeutic use; Intratracheal/adverse effects; Meperidine; Premedication; Succinylcholine
Physiological, plasma beta-endorphin and cortisol responses to nasotracheal intubation were studied in 20 distressed infants of median age 0.3 days (range 0.1-23 days) randomized into groups given pethidine 1 mg/kg (n = 10) or alfentanil 20 micrograms/kg plus suxamethonium 1.5 mg/kg (n = 10) before intubation. All of the infants were given glycopyrrolate 3-5 micrograms/kg. Hypoxaemia during intubation was found in all 10 infants in the pethidine group and in 7 of 10 infants in the alfentanil-suxamethonium group, its duration being significantly longer in the pethidine group and being associated with the duration of the intubation procedure. Blood pressure increased, but not statistically significantly, in all except 2 patients in the alfentanil-suxamethonium group and bradycardia appeared in 1 patient in each group. Plasma beta-endorphin and cortisol values did not show any statistically significant intra-group or inter-group differences. Newborn infants suffer from hypoxaemia during intubation when awake more and therefore need adequate premedication before elective intubation. One alternative is the combination of glycopyrrolate, alfentanil and suxamethonium described here, although the ideal medication and dosage still remain to be defined.
1994
Pokela ML; Koivisto M
Acta Paediatrica
1994
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/10.1111/j.1651-2227.1994.tb13040.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1994.tb13040.x</a>
Infantile systemic hyalinosis: newly recognized disorder of collagen?
Female; Humans; infant; Prognosis; Movement; Pain/etiology; Newborn; Hyalin/metabolism; Collagen Diseases/metabolism/pathology/physiopathology; Gingiva/pathology; Hypertrophy; Jejunum/pathology; Joints/physiopathology; Skin/pathology/ultrastructure
Four infants with stiff skin and painful joint contractures in the first few months of life are described. Other features included small papules, particularly on the face and trunk, perianal nodules, hyperpigmentation over the metacarpophalangeal joints and over the malleoli, gingival hyperplasia, persistent diarrhea, and failure to thrive. Two of these infants died before the age of 18 months. In each case hyaline material was found in the papillary dermis. Ultrastructurally, there was a distinctive fibrillogranular appearance in which a banding pattern could be observed. This material was also found within membrane-bound vacuoles in macrophages and fibroblasts. It had an appearance and localization identical with that of collagen type VI. These features are similar to those reported in juvenile hyaline fibromatosis. It is believed that these infants have a closely related, but nonetheless distinctive, inherited disorder of collagen.
1991
Glover MT; Lake BD; Atherton DJ
Pediatrics
1991
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2133.1990.tb04440.x" target="_blank" rel="noreferrer">10.1111/j.1365-2133.1990.tb04440.x</a>
Death in the intensive care nursery: physician practice of withdrawing and withholding life support
Humans; infant; Intensive Care Units; Medical Futility; Euthanasia; Life Support Care; quality of life; Pediatric; Empirical Approach; Death and Euthanasia; decision making; Newborn; ICU Decision Making; Very Low Birth Weight; Passive; San Francisco; Life Support Systems; University of California
OBJECTIVE: To determine the frequency of selective nontreatment of extremely premature, critically ill, or malformed infants among all infant deaths in a level III intensive care nursery (ICN) and to determine the reasons documented by neonatologists for their decisions to withdraw or withhold life support. METHODS: This was a descriptive study based on review of the medical records of all 165 infants who died at a university-based level III ICN during 3 years. We determined whether each death had occurred despite the use of all available technologies to keep the infant alive or whether these were withheld or withdrawn, thereby leading to the infant's death. We also determined whether neonatologists documented either "futility" or "quality of life" as a reason to limit medical interventions. RESULTS: One hundred sixty-five infants died among the 1609 infants admitted during the study period. One hundred eight infant deaths followed the withdrawal of life support, 13 deaths followed the withholding of treatment, and 44 deaths occurred while infants continued to receive maximal life-sustaining treatment. For 90 (74%) of the 121 deaths attributable to withholding of withdrawal of treatment, physicians cited that death was imminent and treatment was futile. Quality-of-life concerns were cited by the neonatologists as reasons to limit treatment in 62 (51%). Quality of life was the only reason cited for limiting treatment for 28 (23%) of the 121 deaths attributable to withholding or withdrawal of treatment. CONCLUSIONS: The majority of deaths in the ICN occurred as a result of selective nontreatment by neonatologists, with few infants receiving maximal support until the actual time of death. Neonatologists often documented that quality-of-life concerns were considered in decisions to limit treatment; however, the majority of these decisions were based on their belief that treatment was futile. Prospective studies are needed to elucidate the determinants of neonatologists' practice decisions of selective nontreatment for marginally viable or damaged infants.
1997
Wall SN; Partridge JC
Pediatrics
1997
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/10.1097/00006254-199706000-00009" target="_blank" rel="noreferrer">10.1097/00006254-199706000-00009</a>