Browse Items · Pediatric Palliative Care Library

A cross-sectional study on prevalence of pain and breakthrough pain among an unselected group of outpatients in a tertiary cancer clinic

PURPOSE: Systematic knowledge about the prevalence and the treatment effects of cancer pain in patients attending a general oncology outpatient department is limited. The purpose of this study was to investigate the prevalence of pain in a large…

A multi-dimensional approach to the transition of children with developmental disabilities into young adulthood: the acquisition of adult social roles

PURPOSE: To test the hypothesis that the difficulties young adults with developmental disabilities have in obtaining adult social roles are not inevitable consequences of their childhood impairment. We used the conceptual framework of the…

A randomized comparison of patients' understanding of number needed to treat and other common risk reduction formats

BACKGROUND: Commentators have suggested that patients may understand quantitative information about treatment benefits better when they are presented as numbers needed to treat (NNT) rather than as absolute or relative risk reductions. OBJECTIVE: To…

Tags: 2003, 80 And Over, Aged, Backlog, Comprehension, Cross-sectional Studies, Data Interpretation, Female, Humans, Journal Article, Journal Of General Internal Medicine, Lewis CL, Male, Middle Aged, Pignone MP, Risk, Sheridan SL, statistical, Treatment Outcome

Addressing transition to adult health care for adolescents with special health care needs

OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the…

Adverse childhood experiences and lifetime suicide ideation: a cross-sectional study in a non-psychiatric hospital setting

We have assessed the effect of adverse childhood experiences on the lifetime prevalence of suicide ideation in a cross-sectional study involving 182 patients aged 18 to 44 years, consecutive attenders at an A&E review clinic. All participants were…

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…

Anorexia/cachexia-related quality of life for children with cancer

BACKGROUND: Anorexia is a common symptom in patients with cancer, which can lead to poor tolerance of treatment and can contribute to cachexia in extreme cases. Children with advanced-stage cancer are especially vulnerable to malnutrition resulting…

Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit

IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children…

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…

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…

Bereaved Jewish mothers of children who died of cancer: the relationship between the mother and the deceased child and the mother's perceived functioning

BACKGROUND: Coping with grief after a child's death is a complex and dynamic process. The Two-Track Model of Bereavement, which served as the theoretical framework for this study, examines biopsychosocial reactions to bereavement (track I) and…

Changes in siblings after the death of a child from cancer.

IMPLICATIONS FOR PRACTICE: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to…

Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review

OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality…

Child psychiatric epidemiology: current status and future prospects

OBJECTIVE: The purpose of this paper is to present selected findings from child psychiatric epidemiology in areas of prevalence and correlates, and discuss issues in interpreting these data and their relevance. METHOD: Selected references were used.…

Tags: 1995, Adolescent, Backlog, Canada/epidemiology, Canadian Journal Of Psychiatry, Causality, Child, Child Behavior Disorders/epidemiology/prevention & control, Cross-sectional Studies, Forecasting, Humans, Incidence, Journal Article, Mental Disorders/epidemiology/prevention & control, Offord DR, Patient Care Team/trends, Psychiatric Status Rating Scales/statistics & numerical data

Chronic illness, life style and emotional health in adolescence: results of a cross-sectional survey on the health of 15-20-year-olds in Switzerland

The objective was to evaluate the prevalence of chronic conditions (CC) in adolescents in Switzerland; to describe their behaviour (leisure, sexuality, risk taking behaviour) and to compare them to those in adolescents who do not have CC in order to…

Tags: 2003, Adolescent, Adolescent Transitions, Backlog, Chronic Disease/epidemiology, Cross-sectional Studies, European Journal of Pediatrics, Female, Health Status, Humans, Journal Article, Life Style, Male, Mental Health, Miauton L, Michaud PA, Narring F, Risk-Taking, Switzerland/epidemiology

Clinical and MRI correlates of cerebral palsy: the European Cerebral Palsy Study

CONTEXT: Magnetic resonance imaging (MRI) findings have been reported for specific clinical cerebral palsy (CP) subgroups or lesion types but not in a large population of children with all CP subtypes. Further information about the causes of CP could…

Clinical rating scale for pantothenate kinase-associated neurodegeneration: A pilot study

BACKGROUND: Pantothenate kinase-associated neurodegeneration is a progressive neurological disorder occurring in both childhood and adulthood. The objective of this study was to design and pilot-test a disease-specific clinical rating scale for the…

Tags: 2017, Adolescent, Adult, Aged, Aguilera-Albesa S, Behavior, Castro C A, Child, Coelho M, Cognitive Dysfunction/di [Diagnosis], Cognitive Dysfunction/et [Etiology], Correia G L, Costa C, Cross-sectional Studies, Cuadras P D, Darling A, Disabled Persons, dystonia/di [Diagnosis], Dystonia/et [Etiology], Espinos C, Ferreira J, Garcia P J, Garrido C, Gaston I, Gavilan I T, Gonzalez G L, Gutierrez F, Hernandez L C, Humans, IND, Lin J P, Lorenzo S G, Lupo V, Madruga M, Magalhaes M, Marti M J, Marti S L, Martinez-Martin P, Martorell L, Mental Disorders/di [Diagnosis], Mental Disorders/et [Etiology], Middle Aged, Moreira F, Movement Disorders, Nardocci N, Ocular Motility Disorders/di [Diagnosis], Ocular Motility Disorders/et [Etiology], Ortigoza E J D, Pantothenate Kinase-Associated Neurodegeneration/co [Complications], Pantothenate Kinase-Associated Neurodegeneration/di [Diagnosis], Pantothenate Kinase-Associated Neurodegeneration/ge [Genetics], Parkinsonian Disorders/di [Diagnosis], Parkinsonian Disorders/et [Etiology], Perez D B, Pilot Projects, Pires P, PKANDRS, Pons R, Pujol M, Ramos L J, Rego P, Reproducibility of Results, Rodriguez-Blazquez C, scale development, Severity Of Illness Index, Stamelou M, Stefanis L, Tello C, Temudo T, Tomas V M, tone and motor problems, tool development, Tustin K, Vela L, Young Adult, Zorzi G

Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood

BACKGROUND: As an increasing number of patients with chronic conditions of childhood survive to adulthood, experts recommend that young adults with chronic conditions transfer from child-focused to adult-focused primary care. Little, however, is…

Complexity of Medication Regimens for Children With Neurological Impairment

IMPORTANCE: Parents of children with severe neurological impairment (SNI) manage complex medication regimens (CMRs) at home, and clinicians can help support parents and simplify CMRs. OBJECTIVE: To measure the complexity and potentially modifiable…

Tags: 2021, Blackmer AB, children with neurologic impairment, complex medication regimens, Cross-sectional Studies, Feinstein JA, Feudtner C, Friedman H, JAMA Network Open, Kempe A, October 2021 List, Orth LE, parent support, Samay S

Continuity of care: influence of general practitioners' knowledge about their patients on use of resources in consultations.

OBJECTIVE--To examine the relation between general practitioners' knowledge about their patients and the use of resources in consultations. DESIGN--A cross sectional evaluation of consultations. SETTING AND SUBJECTS--A representative sample of 133…

Demographic and Clinical Differences Between Applied Definitions of Medical Complexity

OBJECTIVES: To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS: We conducted a…

Tags: 2022, Child, Chronic Disease, Cross-sectional Studies, Demography, Goodman DM, Heneghan JA, Hospital Pediatrics, Hospitalization, Hospitals, Humans, Infant, October 2022 List, Pediatric, Ramgopal S, Retrospective, Studies

Development and validation of the Communicating with Family about Brain Death Scale

This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using…

Disease severity in children and adults with Pompe disease related to age and disease duration

Information about 255 children and adults with Pompe disease was gathered through a questionnaire. Disease severity was associated with disease duration and not with age; an early manifestation of the disease implied earlier wheelchair or ventilator…

Disorders of Upper Limb Movements in Ataxia-Telangiectasia

Ataxia-telangiectasia is known for cerebellar degeneration, but clinical descriptions of abnormal tone, posture, and movements suggest involvement of the network between cerebellum and basal ganglia. We quantitatively assessed the nature of…

Emotion regulation in patients with rheumatic diseases: validity and responsiveness of the Emotional Approach Coping Scale (EAC)

BACKGROUND: Chronic rheumatic diseases are painful conditions which are not entirely controllable and can place high emotional demands on individuals. Increasing evidence has shown that emotion regulation in terms of actively processing and…

End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses

OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric…

Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care

BACKGROUND: Research found that low levels of professional confidence and personal comfort among neonatal clinicians regarding palliative care may indicate a lack of competence and hesitancy to offer neonatal palliative care services. PURPOSE: This…

Experience of Pediatric Patient Death, Moral Distress, and Turnover Intention among Pediatric Nurses at a Tertiary Hospital in South Korea: A Cross-Sectional Study

Background: Pediatric nurses are particularly vulnerable to moral distress and turnover due to frequent experiences with patient death combined with limited pediatric palliative resources and related support. Objective(s): This study examined…

Tags: 2022, April 2022 List, Cross-sectional Studies, Death, Jang SG, Journal of Palliative Medicine, Kim S, Min A, Moral Distress, Pediatric, Pediatric nurses, South Korea, Turnover intention

Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit

OBJECTIVE: To explore patient-related factors which influence the decisions of pediatric intensive care unit (ICU) caregivers to restrict life-support interventions. DESIGN: Cross-sectional survey. SETTING: A university-affiliated pediatric ICU.…

Factors related to the quality of life in adolescents with chronic pain

OBJECTIVE: This study examined the relationships between pain characteristics, psychosocial factors, and quality of life among adolescents with chronic pain that existed for at least 3 months, either recurrently (ie, pain with pain-free intervals) or…

Family function in families of children with Duchenne muscular dystrophy

This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index)…

Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction

OBJECTIVE: Family members of critically ill patients report dissatisfaction with family-clinician communication about withdrawing life support, yet limited data exist to guide clinicians in this communication. The hypothesis of this analysis was that…

Family support in pediatric palliative care: how are families impacted by their children's illnesses?

CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service…

Follow-up in children with Joubert syndrome

Although Joubert syndrome (JS) was first reported in 1969 by Joubert et al (21), the long-term outcome is not yet documented. We report 19 children (4 pairs of siblings) from a single institution diagnosed with JS. Nine children were last seen…

Forgoing life-sustaining treatments: how the decision is made in French pediatric intensive care units

OBJECTIVES: The decision to forgo life support is frequently made in pediatric intensive care units (PICUs). A group of experts is currently preparing recommendations for guidelines concerning this decision-making process in France. We have performed…

Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario

OBJECTIVE: To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. METHODS: A total of 468 caregivers were interviewed about…

Gender differences in burden and depression among informal caregivers of demented elders in the community

BACKGROUND: Earlier studies have yielded inconsistent findings regarding gender differences with respect to burden and depression among informal community caregivers of dementia patients. OBJECTIVES: The aim of the study was to determine whether or…

Gender differences in violence exposure among university students attending campus health clinics in the United States and Canada

PURPOSE: To explore gender differences in prevalence, types, perpetrators, and correlates of recent violence experiences among university students at campus clinics at five universities in the Midwest and Pacific Northwest U.S. and Canada. METHODS:…

Good-parent beliefs of parents of seriously ill children

IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents'…

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