Browse Items · Pediatric Palliative Care Library

Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer

Background: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical…

Cross-sectional study of the perceived well-being of children in palliative care

Abstract Objective: To describe the perceived wellbeing (pWB) and the psychological characteristics of young people with life-limiting and life-threatening conditions (LLTCs). Methods: We conducted a cross-sectional study in young people aged 8 years…

Demographic and clinical profile of children with congenital heart diseases receiving palliative care

Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored. Method(s): This prospective interventional study was conducted on…

Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers

Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric…

Parents' descriptions of labouring with an antepartum fetal death: Findings from the Birthing in Grief study

Abstract Background: Evidence to guide intrapartum care when an unborn baby has died is limited. Aims: To explore parents' experiences of care during labour of an antepartum stillbirth. Materials and methods: Semi-structured interviews with 18…

Healthy siblings' perspectives about paediatric palliative care: A qualitative systematic review and meta-synthesis

Background: Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide…

Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra -- Children's Palliative Care Project in India

Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with…

Development, behavior, and biomarker characterization of Smith-Lemli-Opitz syndrome: An update

Background: Smith-Lemli-Opitz syndrome (SLOS) is an autosomal recessive inborn error of cholesterol metabolism syndrome with neurocognitive manifestations. SLOS is the result of mutations in the gene encoding the 7-dehydrocholesterol reductase, which…

Tags: 2016, 7 dehydrocholesterol/ec [Endogenous Compound], 8 dehydrocholesterol/ec [Endogenous Compound], adaptive behavior, Adolescent, Adult, Aggression, Albert P, Article, Autism, automutilation, Behavior, Bianconi S, Bukelis I, Case Study, cerebrospinal fluid level, characteristics, Child, Child Rearing, childhood, cholesterol/ec [Endogenous Compound], Clinical Article, Cognition, delayed development, development, Developmental delay, Farmer C, Female, Human, Intelligence Quotient, Interpersonal Communication, Joseph L, Journal of Neurodevelopmental Disorders, Lanham D, Male, Observational Study, Parent, Porter F D, Preschool Child, Priority Journal, problem behavior, Sarphare G, Smith Lemli Opitz syndrome, Smith-Lemli-Opitz syndrome, Socialization, Stanford-Binet Intelligence Scale, Sterols, Swedo S, Thurm A, Tierney E, tone and motor problems, Trajectory, Unclassified Drug, Walking, Wassif C A, Wheeler C, Young Adult

Developmental and degenerative patterns associated with cognitive, behavioural and motor difficulties in the Sanfilippo syndrome: an epidemiological study

The results of a survey given to parents with Sanfilippo syndrome (MPS III) children (n = 30) are described with an emphasis in several areas. Developmental and degenerative patterns are outlined in detail and contrasted with developmental milestones…

Pilot Validation of the Tuberous Sclerosis-Associated Neuropsychiatric Disorders (TAND) Checklist

BACKGROUND: Tuberous sclerosis complex is a multisystem disorder that includes a range of tuberous sclerosis associated neuropsychiatric disorders (TAND). The lifetime prevalence rates of TAND are very high; yet surveys suggest that the majority of…

A cross-sectional controlled developmental study of neuropsychological functions in patients with glutaric aciduria type i

Background: Glutaric aciduria type I (GA-I) is an inherited metabolic disease due to deficiency of glutaryl-CoA dehydrogenase (GCDH). Cognitive functions are generally thought to be spared, but have not yet been studied in detail. Methods: Thirty…

Psychological resilience, pain catastrophizing, and positive emotions: perspectives on comprehensive modeling of individual pain adaptation

Pain is a complex construct that contributes to profound physical and psychological dysfunction, particularly in individuals coping with chronic pain. The current paper builds upon previous research, describes a balanced conceptual model that…

Tags: 2013, Adaptation, Backlog, Catastrophization, Cognition, Current Pain and Headache Reports, Emotions, Female, Humans, Journal Article, Male, Models, Motivation, Pain, Pain Measurement, Psychological, Resilience, Sturgeon JA, Zautra AJ

Quantitative Evaluation of the Clinical Efficacy of Attention Bias Modification Treatment for Anxiety Disorders

Attention bias modification treatment (ABMT) is a novel treatment for anxiety disorders. Although a number of other meta-analytic reviews exist, the purpose of the present meta-analysis is to examine issues unaddressed in prior reviews. Specifically,…

Outcomes of unrelated umbilical cord blood transplantation for X-linked adrenoleukodystrophy

Adrenoleukodystrophy (ALD) is an X-linked disorder caused by a defect in the metabolism of long chain fatty acids leading to demyelination, neurodegeneration, and death. The disease typically presents in young boys and adolescent boys. Allogeneic…

Children's reactions to parental and sibling death

A significant population of children will experience bereavement because of the death of a parent or a sibling. This grief is different from the bereavement seen in adults and needs to be understood in a developmental context. Cognitive and emotional…

Tags: 2006, Attitude To Death, Backlog, Bereavement, Child, Cognition, Culture, Current Psychiatry Reports, Humans, Journal Article, Parents, Psychotherapy, Razdan A, Risk Factors, sibling bereavement, Siblings, Sood AB, Weller EB, Weller R

Links between abnormal brain structure and cognition in holoprosencephaly

Converging information on medical issues, motor ability, and cognitive outcomes is essential when addressing long-term clinical management in children with holoprosencephaly. This study considered whether adding more informative structural indices to…

Managing children's pain

Uncertainty in illness

1988

Tags: 1988, Adaptation, Backlog, Cognition, Disease/psychology, Educational Status, Humans, Image--the Journal Of Nursing Scholarship, Journal Article, Mental Processes, Mishel MH, Models, Professional-patient Relations, Psychological, Sick Role, Social Support

Outcome at age 4 years in offspring of women with maternal phenylketonuria: the Maternal PKU Collaborative Study

CONTEXT: Untreated maternal phenylketonuria (PKU) increases risk for developmental problems in offspring. The extent to which this risk is reduced by maternal dietary therapy at various stages of pregnancy is not known. OBJECTIVE: To determine…

Making sense of loss and benefiting from the experience: two construals of meaning

Theoretical models of the adjustment process following loss and trauma have emphasized the critical role that finding meaning plays. Yet evidence in support of these models is meager, and definitions of meaning have been too broad to facilitate a…

Tags: 1998, Adult, Analysis of Variance, Backlog, Cognition, Davis CG, Female, Grief, Humans, Interpersonal Relations, Journal Article, Journal Of Personality And Social Psychology, Larson J, Life Change Events, Male, Middle Aged, Nolen-Hoeksema S, Social Adjustment, Spirituality

Experimental evidence for stages of health behavior change: the precaution adoption process model applied to home radon testing

Hypotheses generated by the precaution adoption process model, a stage model of health behavior, were tested in the context of home radon testing. The specific idea tested was that the barriers impeding progress toward protective action change from…

Cognitive effects of interictal epileptiform discharges in children

Tags: 2012, Aldenkamp B, Arends J, Backlog, Boon P, Child, Cognition, de la Parra N, Ebusemail S, EEG, Epilepsy, Epileptiform, European Journal of Paediatric Neurology, Hendriksen J, Hendriksen R, Journal Article, Santegoeds E, Spike, van der Horst E

A Sociocultural Approach to Children's Perceptions of Death and Loss.

By employing the phenomenographic approach, the present study explored children's cognitive understanding of and emotional responses to death and bereavement. Participants included 52 Korean, 16 Chinese, and 16 Chinese American children ages 5-6.…

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