Browse Items · Pediatric Palliative Care Library

"The one thing you can never take away"

This article describes one nurse's experience resulting from her interest in the value of giving bereavement photographs to parents who experience a perinatal loss. Three families were interviewed about the meaning of those photographs. The parents…

Tags: 2001, Adult, Alexander KV, Backlog, Female, Fetal Death, Grief, Humans, Infant, Journal Article, Male, Maternal-Child Nursing, Newborn, Photography, Pregnancy, Social Support, The American Journal Of Maternal Child Nursing

[Use of subcutaneous route for comfort care in neonatal palliative population: Systematic review and survey of practices in France]

Introduction: Subcutaneous hydration (hypodermoclysis) and drug administration is a widely used method of analgesic therapy in adult palliative care medicine. Very little is known about its use in neonatal medicine. Evidence-based guidelines do not…

A literature review on off-label drug use in children

The aim was to compare results of studies performed in different settings worldwide and identify common therapeutic areas to allow for focused interventions, because off-label drug use can be a measure of the lack of knowledge concerning paediatric…

A prospective investigation into the epidemiology of in-hospital pediatric cardiopulmonary resuscitation using the international Utstein reporting style

OBJECTIVE: Data regarding pediatric in-hospital cardiopulmonary resuscitation (CPR) have been limited because of retrospective study designs, small sample sizes, and inconsistent definitions of cardiac arrest and CPR. The purpose of this study was to…

A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit

To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a…

A retrospective, multinational, multicenter study on the natural history of infantile-onset Pompe disease

OBJECTIVE: To characterize the natural progression of infantile-onset Pompe disease. STUDY DESIGN: Retrospective chart reviews of 168 patients with documented acid alpha-glucosidase deficiency and symptom onset by 12 months of age; Kaplan-Meier…

A scale to monitor progression and treatment of mitochondrial disease in children.

Mitochondrial diseases affect all age groups, but those with childhood onset often seem to experience the greatest burden of disability. In some paediatric patients this can be explained by a cumulative disability acquired over many years. In others,…

Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium

BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these…

Tags: 2019, Adolescent, Article, Aujoulat I, Belgium, BMJ Paediatrics Open, Bouckenaere D, Brichard B, Cardiovascular Disease, Child, Chronic Disease, complex chronic condition, congenital disorder, Data Base, De Clercq E, December 2019 List, Female, Fonteyne C, Friedel M, gastrointestinal disease, Genetic Disorder, Gilson A, groups by age, Guillet A, Health Care Access, hematologic disease, Hospital, Hospital Admission, hospitalized adolescent, Hospitalized Child, Human, Icd-9, immune deficiency, Infant, Lahaye M, Length Of Stay, Mahboub A, Major Clinical Study, Male, Malignant Neoplasm, Metabolic Disorder, Morbidity, Neurologic Disease, Newborn, Palliative Therapy, Patient Care, Patient Referral, pediatric patient, pediatric ward, Priority Journal, Respiratory Tract Disease, Retrospective Study, urinary tract disease, Wojcik T

Acute and chronic paediatric intensive care patients: current trends and perspectives on resource utilization

BACKGROUND: Advances in paediatric critical care have resulted in increased survival of critically ill patients, many of whom require long-term ventilation as a means of life support. AIM: To determine current trends in resource utilization, and…

Addressing the continuum of maternal and newborn care in Ghana: implications for policy and practice

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…

Advice seeking and appropriate use of a pediatric emergency department

OBJECTIVES: To determine whether seeking advice prior to an unscheduled visit to a pediatric emergency department (PED) influences appropriate use of this setting for minor illnesses. DESIGN: Cross-sectional questionnaire survey. SETTING: The medical…

AIMP1 deficiency presents as a cortical neurodegenerative disease with infantile onset

We report the second family with AIMP1 deficiency, due to a homozygous truncating AIMP1 (g.107248613 C > T) mutation. This female showed early-onset developmental arrest, intractable epileptic spasms, microcephaly, and a rapid clinical course leading…

An approach to the diagnosis of metabolic diseases

Inborn metabolic errors, which are not common, may have significant implications for patients. Those patients with such errors who have acute life-threatening symptoms must be treated immediately, and specimens for analysis should be obtained and…

Tags: 2004, Backlog, Barness LA, Child, Fetal And Pediatric Pathology, Humans, Inborn Errors/diagnosis/genetics/metabolism, Infant, Journal Article, Laboratory Techniques and Procedures, Metabolism, Newborn, Q3 Scoping Review Results

Analgesics for the treatment of pain in children

Analysis Of Death And Palliative Care In A Neonatal Intensive Care Unit

Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected…

Annual summary of vital statistics: 2008

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.…

Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents

BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a…

Approaches to end-of-life discussions with parents of a profoundly compromised newborn

Aromatic L-amino acid decarboxylase deficiency: overview of clinical features and outcomes

In this paper, we provide a brief update of diagnostic considerations and biochemical phenotype in L-amino acid decarboxylase deficiency. We review clinical features and outcome data in 11 affected patients, including 7 previously unreported cases.…

Assessment of the need for palliative care for children in South Africa

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries'…

Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients

OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical…

Avoiding admission for afebrile pediatric sickle cell pain: pain management methods

Bacteraemia and antibiotic use in respiratory syncytial virus infections

AIMS: To examine the frequency of and risk factors for bacteraemia in children hospitalised with respiratory syncytial virus (RSV) infection; and to determine current use of antibiotics in hospitalised children with RSV infection. METHODS:…

Barriers of Palliative Care in Neonatal Intensive Care Units

OBJECTIVE: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses' attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study…

Barriers to and facilitators of end-of-life decision-making by neonatologists and neonatal nurses in neonates: a qualitative study

Context Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in…

Barriers to and Facilitators of Neonatal Palliative Care Among Neonatal Professionals in China

Objectives: This study investigated institutional and personal barriers to and facilitators of neonatal palliative care facing neonatal professionals in China. Methods: A cross-sectional questionnaire surveyed 231 neonatal clinicians employed in 5…

Tags: 2022, 2022 Special Edition Low Resource Setting Issue, American Journal of Hospice and Palliative Medicine, Chang YC, Child, Cross-sectional Study, Gu L, Health Personnel Attitude, Human, Li ZZ, Neonatal Intensive Care Unit, Newborn, palliative nursing, Palliative Therapy, Peng NH, Terminal Care, Wei BR, Zhou JF

Basic neonatal resuscitation skills of midwives and nurses in Eastern Ethiopia are not well retained: An observational study

BACKGROUND: Neonatal resuscitation is a life-saving intervention for birth asphyxia, a leading cause of neonatal mortality. Worldwide, four million neonate deaths happen annually, and birth asphyxia accounts for one million deaths. Improving…

Being a Parent: Findings from a Grounded Theory of Memory-Making in Neonatal End-Of-Life Care

PURPOSE: Neonatal palliative care guidelines increasingly recommend that parents be encouraged to provide care for their dying baby and to spend time with the before and after death. However, little is currently known about how parents perceive such…

Tags: 2021, Bereavement, Harms L, Infant, Journal of Pediatric Nursing, May 2021 List, Memory-making, Newborn, Nicholson P, Parent, Photography, Thornton R

Bereaved parents' experience of research participation.

Despite the ethical codes guiding bereavement research, few studies have been conducted to evaluate the perceived stress experienced by the bereaved, and to explore which methodologies cause least distress. This article investigates how bereaved and…

Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition

BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in…

Beta-endorphin concentration after administration of sucrose in preterm infants

BACKGROUND: Sucrose is an effective analgesic for procedural pain in preterm infants. It has been hypothesized that its analgesic effects are mediated by the release of endogenous opioid neurotransmitters such as beta-endorphin. OBJECTIVE: To…

Beta-endorphin levels of children in acute stress

In this study aiming to clarify the relationships between beta-endorphin and glucose levels, beta-endorphin levels were determined in children in acute stress. The study was carried out on 32 critically ill children between 5 days and 12 years…

Birth weight percentile and the risk of term perinatal death

OBJECTIVE: To estimate the association between birth weight percentile and the risk of perinatal death at term in relation to the cause of death. METHODS: We performed a retrospective cohort study of all term singleton births in delivery units in…

Brachytherapy in children with rhabdomyosarcomas of the nasolabial fold

BACKGROUND: Rhabdomyosarcomas (RMS) of the nasolabial fold can be difficult to manage surgically due to functional and cosmetic limitations. Therefore, brachytherapy (BT) has been proposed to improve local control while limiting the volume of…

Brazilian Neonatal Nurses' Palliative Care Experiences

Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children

Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping…

Can we use methadone for analgesia in neonates?

2001

Tags: 2001, Adult, Analgesia/methods, Analgesics, Anand KJ, Archives of Disease in Childhood. Fetal and Neonatal Edition, Backlog, Chana SK, Child, Drug Tolerance, Humans, Infant, Journal Article, Methadone, Newborn, Opioid/adverse Effects, Preschool

Canadian cancer statistics at a glance: cancer in children

Care goals and decisions for children referred to a pediatric palliative care program

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…

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