Browse Items (221 total)
- Tags: Young Adult
Resource Utilization Among Individuals Dying Of Pediatric Life-threatening Diseases
Tags: 2013, Adolescent, British Columbia, Chavoshi N, Child, Child Preschool, Female, Health Resources/ Utilization, Health Services Needs And Demand, Humans, Infant, Infant Newborn, Journal of Palliative Medicine, Length Of Stay/statistics & Numerical Data, Male, Miller T, Patient Discharge/statistics & Numerical Data, Resource Utilization Among Individuals Dying Of Pediatric Life-threatening Diseases, Siden H, Terminal Care, Young Adult
To explore the neonatal nurses' beliefs and attitudes towards caring for dying neonates in Taiwan
Tags: 2013, Adult, Attitude Of Health Personnel, Attitude To Death, Chang YC, Chen CH, Cross-sectional Studies, Culture, Female, Huang LC, Humans, Infant Newborn, Intensive Care Units Neonatal, January 2018 List, Lee HY, Liu HL, Maternal & Child Health Journal, Neonatal Nursing, Neonatology, Peng NH, Surveys And Questionnaires, Taiwan, Terminal Care/px [psychology], Wu SY, Young Adult
Family experience in a regional participant contact registry for research on intellectual disability
Tags: 2014, 2023 SE1 - Parent Perspectives, Adolescent, Adult Child, Child, Conners FA, Family, Female, Hamilton JC, Humans, Infant, Intellectual and Developmental Disabilities, Intellectual Disability, Male, Middle Aged, Patient Selection, Phillips BA, Preschool, Registries, Research, Rhodes JD, Surveys And Questionnaires, Young Adult
Assessment of the need for palliative care for children in South Africa
Tags: 2014, Adolescent, Backlog, Child, Connor S, Cross-sectional Studies, Downing J, Health Services Accessibility, Health Services Needs And Demand, Humans, Infant, International Journal of Palliative Nursing, Journal Article, King E, Lim Ah KP, Marston J, Newborn, Palliative Care, Preschool, Sisimayi C, South Africa, Yates R, Young Adult
“have No Regrets:” Parents’ Experiences And Developmental Tasks In Pregnancy With A Lethal Fetal Diagnosis.
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological…
Tags: 2016, Adult, Choice Behavior, Côté-Arsenault D, Denney-Koelsch E, Developmental Task, Emotions, Female, Fetal Diseases/diagnosis, Fetal Diseases/mortality, Humans, Infant, Lethal Fetal Diagnosis, Longitudinal, Longitudinal Studies, Male, March 2016 List, Middle Aged, Needs Assessment, Palliative Care, Parents/psychology, Perinatal Care, Perinatal Palliative Care, Phenomenology, Pregnancy, Prenatal Diagnosis, Prenatal Diagnosis/psychology, Qualitative Research, Social science & medicine, Usa, Young Adult
Medical and end-of-life decision making in adolescents' pre-heart transplant: A descriptive pilot study
Tags: 2020, Adolescent, Adult, Advance Care Planning, Article, Attention, Blume E D, Child, Clinical Article, Cousino M K, Cross-sectional Study, Decision Making, Female, heart graft, Human, Lowery R, Male, May 2020 List, Miller V A, Palliative Medicine, Patient Participation, Pilot Study, Prognosis, Rottach N, School Child, Schumacher K R, Smith C, Uzark K, Young Adult
Staff Efficiency Trends Among Pediatric Hospices, 2002-2011.
Tags: 2016, Adolescent, California, Child, Child Preschool, Cozad MJ, Efficiency Organizational/statistics & Numerical Data, Female, Forecasting, Hospice Care/statistics & Numerical Data, Hospice Care/trends, Hospices/trends, Hospitals Pediatric, Hospitals Pediatric/statistics & Numerical Data, Humans, Infant, Infant Newborn, Lindley LC, Male, Mixer SJ, November 2016 List, Nursing Economic$, Personnel Staffing And Scheduling/statistics & Numerical Data, Personnel Staffing And Scheduling/trends, Workload/statistics & Numerical Data, Young Adult
Adverse events in hospice and palliative care: a pilot study to determine feasibility of collection and baseline rates
Tags: 2011, 80 And Over, Abernethy AP, Accidental Falls, Adult, Agar MR, Aged, Australia, Backlog, Confusion, Currow DC, Feasibility Studies, Female, Greene A, Hospice Care/standards, Humans, Hyperglycemia, Hypoglycemia, Hypotension, Journal Article, Journal of Palliative Medicine, Male, Middle Aged, Palliative Care/standards, Pilot Projects, Retrospective Studies, Rowett D, To TH, Urinary Retention, Young Adult
Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT
Tags: 2017, Adolescent, Advance Care Planning/og [Organization & Administration], Communication, Contemporary Clinical Trials, Curtin KB, Decision Making, Family/px [psychology], Female, Humans, Longitudinal Studies, Lyon ME, Male, Neoplasms/px [psychology], Okonkwo OC, Oncology 2018 List, Patient Preference/px [Psychology], Quality Of Life, Research Design, Single-Blind Method, Terminal Care/og [organization & Administration], United States, Wang J, Watson AE, Young Adult
Acceptability Of Family-centered Advanced Care Planning For Adolescents With Hiv
Tags: 2016, Adolescent, Adolescent Health Services/sn [statistics & Numerical Data], Adolescent Palliative Care Consortium, Advance Care Planning, Cheng Y I, Dallas R H, Family Nursing, Family/px [psychology], Female, Garcia A, Hiv Infections/px [psychology], Hiv Infections/th [therapy], Humans, Kimmel A, Lyon M, Male, Patient Acceptance Of Health Care/sn [statistics & Numerical Data], Pediatrics, Prospective Studies, Rana S, September 2017 List, Surveys And Questionnaires, United States, Wang J, Wilkins M L, Young Adult
Self-requested euthanasia for children in Belgium
Tags: 2014, Active, Adolescent, Backlog, Belgium, Choice Behavior, Dan B, de Cléty Stéphan Clément, Decision Making, Europe, Euthanasia, Fonteyne C, Humans, Journal Article, Lancet, Mental Competency, Minors, Palliative Care, Patient Rights, Personal Autonomy, Quality Of Life, Voluntary, Wedge Argument, Young Adult
Clinical rating scale for pantothenate kinase-associated neurodegeneration: A pilot study
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
Perceptions of discrimination among Mexican American families of seriously ill children
Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions
Tags: 2017, Balkin Emily M, brain disease, central nervous system disease, Child, Chromosome Disorder, Comfort, Death, DeCourcey DD, Drug Withdrawal, Female, Human, Intensive Care Unit, January 2018 List, Life Sustaining Treatment, Lung Disease, Major Clinical Study, Male, Medical Record, Oladunjoye A, Palliative Therapy, Resuscitation, Silverman M, Study Design, Terminal Care, The Journal Of Pediatrics, Wolfe J, Young Adult
Transition to adult services for children and young people with palliative care needs: a systematic review
Tags: 2011, Adi Y, Adolescent, Adolescent Health Services/organization & administration, Archives of Disease in Childhood, Backlog, Carter YH, Continuity Of Patient Care/organization & Administration, Delivery of Health Care/organization & administration, Doug M, Evidence-Based Medicine/methods, Health Services Research/methods/standards, Humans, Journal Article, Kelly D, Models, Organizational, Palliative Care/organization & Administration, Paul M, Petchey R, Williams J, Young Adult
Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives.
Tags: 2010, 80 And Over, Adult, Advance Care Planning, Advance Directives, Aged, Backlog, DNAR, Dow LA, Family, Female, Humans, Interviews As Topic, Journal Article, Journal Of Clinical Oncology, Kuhn L, Lamont EB, Lyckholm L, Male, Matsuyama RK, Medical Oncology, Middle Aged, Neoplasms/px [psychology], Palliative Care, Patient Preference, Physician-patient Relations, Physicians, Ramakrishnan V, Smith TJ, Terminal Care, Young Adult
Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier: Psychological health in siblings who lost a brother or sister to cancer
Tags: 2013, Adaptation, Adult, Backlog, Bereavement, Case-Control Studies, Child, Cohort Studies, Eilegård A, Female, Follow-up Studies, Health Status, Humans, Journal Article, Kreicbergs U, Male, Mental Health, Neoplasms, Nyberg T, Psycho-Oncology, Psychological, Questionnaires, Self Concept, sibling bereavement, Siblings, Sleep Initiation and Maintenance Disorders, Steineck G, Sweden, Young Adult
Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol
Tags: 2015, Adolescent, Adult, Bradford N, Child, Communication, Critical Illness/px [psychology], Danby S, Ekberg S, Female, Health Personnel/px [psychology], Herbert A, Humans, Infant, Jbi Database Of Systematic Reviews And Implementation Reports, Male, March 2018 List, Newborn, Palliative Care/px [psychology], Parents/px [psychology], Preschool, Professional-family Relations, Qualitative Research, Yates P, Young Adult
Sharing care at the End of life for adolescent patients with neuro-disability: A case series
Tags: 2023, Adolescent, Adult, ADULTHOOD, Aspey H, August List 2031, Bereavement Support, BMJ Supportive and Palliative Care, Bond E, Case Study, Child, Clinical Article, Community Health Nursing, conference abstract, Deterioration, Elverson J, family support, Female, groups by age, health hazard, Hoskins R, Hospital Admission, hospital discharge, Human, Learning, Mackerness C, Male, Neurodisability, Palliative Therapy, Patient Care, Shiell A, Terminal Care, Young Adult
Use of a clinical pathway to improve the acute management of vaso-occlusive crisis pain in pediatric sickle cell disease
Tags: 2014, Adolescent, Adult, Analgesics, Anemia, Arterial Occlusive Diseases, Babineau J, Backlog, Child, Critical Pathways, Ender KL, Female, Follow-up Studies, Humans, Infant, Journal Article, Kharbanda A, Krajewski JA, Male, Pain, Pain Management, Pediatric Blood & Cancer, Preschool, Prognosis, Prospective Studies, Saroyan JM, Schechter W, Sickle Cell, Tertiary Care Centers, Tresgallo M, Young Adult
Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations
Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study
Tags: 2009, Adolescent, Backlog, Child, Cohort Studies, Feinstein JA, Female, Feudtner C, Hexem KR, Hospital Mortality, Humans, Infant, Journal Article, Journal of Palliative Medicine, Logistic Models, Male, Models, Mortality, Newborn, Patient Discharge, Pediatrics, Pennsylvania/epidemiology, Preschool, Prognosis, Retrospective Studies, Shabbout M, Silber JH, Sochalski J, Theoretical, Young Adult
Pediatric palliative care patients: a prospective multicenter cohort study
Tags: 2011, Adolescent, Backlog, Child, Chronic Disease, Chronic Disease/epidemiology/therapy, Dussel V, Eligibility Determination, Eligibility Determination/methods, Female, Feudtner C, Follow-up Studies, Friebert SE, Friedrichsdorf SJ, Hays Ross M, Hexem KR, Hospitalization, Hospitalization/trends, Humans, Infant, Journal Article, Kang T, Male, Medical Audit, Medical Audit/organization & administration, Newborn, Osenga K, Palliative Care, Palliative Care/organization & Administration, PEDI Study, Pediatrics, Preschool, Prevalence, Prospective Studies, Siden H, United States, United States/epidemiology, Wolfe J, Young Adult
Young People and Transition at a Hospice for Adults
“It’s brilliant! It’s working! It’s needed!” A Hospice Short Break Innovation for Young Adults
Tags: 2022, Adult, BMJ Supportive and Palliative Care, Child, Clinical Article, conference abstract, Drug Withdrawal, Female, Finlinson H, Health Care Delivery, Hospice, Human, Human Experiment, Interview, Learning, Male, March List 2023, outcome assessment, Palliative Therapy, positive feedback, Questionnaire, Sibling, Spathis A, Trust, Young Adult
Change in gross motor abilities of girls and women with rett syndrome over a 3- to 4-year period
Tags: 2011, Adolescent, Adult, Age Factors, Arginine/genetics, Australia, Bebbington A, characteristics, Disease Progression, Downs J, Female, Foley K R, Girdler S, Humans, Jacoby P, Journal of Child Neurology, Kaufmann W E, Leonard H, Linear Models, Longitudinal Studies, Methyl-CpG-Binding Protein 2/genetics, Motor Skills/physiology, Movement Disorders/etiology/genetics, Mutation/genetics, Retrospective Studies, Rett syndrome, Rett Syndrome/complications/genetics, tone and motor problems, Trajectory, Young Adult
Spirituality in patients with advanced illness: The role of symptom control, resilience and social network
Tags: 2016, Adolescent, Adult, Aged, Barreto P, Clinical Trial, Cross Sectional Study, Cross-sectional Studies, Emotion, February 2018 List, Female, Fombuena M, Galiana L, Human, Journal Of Health Psychology, Male, Middle Aged, Multicenter Study, Oliver A, Palliative Therapy, Pascual A, Psychological Resilience, Psychology, Religion, Social Support, Soto-Rubio A, Terminal Care, terminally Ill Patient, Very Elderly, Young Adult
Advanced care planning in children with life-limiting conditions – the Wishes Document
Tags: 2010, Adolescent, Advance Directives, Archives of Disease in Childhood, Backlog, Berringer AJ, Child, DNAR, Finlay F, Fraser J, Great Britain, Harris N, Health Policy, Humans, Infant, Journal Article, Patient Care Planning/og [Organization & Administration], Preschool, Prescott H, Prognosis, Terminal Care/og [organization & Administration], Young Adult
Polypharmacy in children and young people with life-limiting conditions from 2000-2015: a repeated cross-sectional study in England
Tags: 2022, Adult, Age, Article, August 2022 List, Child, Chronic Disease, Cohort Analysis, congenital disorder, Controlled Study, Cross-sectional Study, Doran T, England, Female, Fraser LK, Gibson-Smith D, Hills M, Human, Jarvis S, Journal of Pain and Symptom Management, Major Clinical Study, Male, Neefjes V, Nervous System, Observational Study, Papworth A, Pediatrics, Polypharmacy, Prevalence, Taylor J, Young Adult
Rising national prevalence of life-limiting conditions in children in England.
Tags: 2012, Adolescent, Adult, Aldridge J, Backlog, Child, Critical Illness/epidemiology, England/epidemiology, Female, Fraser LK, Hain R, Humans, Infant, Journal Article, Male, McKinney PA, Miller M, Newborn, Norman P, Palliative Care, Parslow RC, Pediatrics, Preschool, Prevalence, Retrospective Studies, Terminally Ill/statistics & numerical data, Young Adult
Siblings Caring for and about Pediatric Palliative Care Patients
Tags: 2013, Adolescent, Anticipation, Backlog, Caregivers, Child, Communication, Female, Gaab EM, Grief, Humans, Journal Article, Journal of Palliative Medicine, Macleod RD, Male, New Zealand, Owens GR, Palliative Care, Preschool, Psychological, Qualitative Research, Siblings, Terminally Ill, Young Adult
Mechanical Ventilation In Children With Life-limiting Conditions
Tags: 2016, Adult, Artificial Ventilation, Cancer Epidemiology, Cantero EQ, Carro CC, Cerebral Palsy, Child, Chromosome Disorder, Cognitive Defect, Controlled Study, Cross-sectional Studies, Cross-sectional Study, Death, European Respiratory Journal, Follow Up, Gaboli M, Garrido MM, Human, Lung Disease, Major Clinical Study, May 2017 List, Mucopolysaccharidosis, Neuromuscular Disease, Only Child, Palliative Care, Palliative Therapy, Pecellin ID, Quality Of Life, Respiration Artificial, Respiratory Insufficiency, Rodriguez LMR, Spain, University Hospital, Valencia JPG, Ventilators Mechanical, Young Adult
Safety and pharmacokinetics of medical cannabis preparation in a monocentric series of young patients with drug resistant epilepsy
Tags: 2020, Adolescent, Adult, Astuni P, Barco S, Calevo MG, Cangemi G, Cannabidiol (CBD), Child, Child Preschool, childhood, Complementary Therapies in Medicine, De Grandis E, Delta-9-tetrahydrocannabinol (THC), Dose-Response Relationship Drug, Drug Resistant Epilepsy/drug therapy, Drug-resistant epilepsy, Female, Fucile C, Gherzi M, Humans, January 2021 List, Male, Mancardi MM, Manfredini L, Marini V, Mattioli F, Medical cannabis galenic preparation, Medical Marijuana/administration & dosage/adverse effects/pharmacokinetics, Milano G, Nobili L, Prospective Studies, Young Adult
Balloon dilatation in esophageal strictures in epidermolysis bullosa and the role of anesthesia
Tags: 2017, Adolescent, Adult, Anesthesia, Article, Ates U, Balloon dilatation, Can O S, Child, Clinical Article, Clinical Effectiveness, colon interposition, digestive endoscope, Dindar H, Diseases of the Esophagus, Dysphagia, endoscopic balloon dilatation, epidermolysis bullosa, Ergun E, esophagus balloon, esophagus perforation, esophagus stenosis/co [Complication], esophagus stenosis/th [Therapy], feeding difficulties, Female, Gastrostomy, Gollu G, Human, Male, Patient Safety, Preschool Child, Priority Journal, Retrospective Study, School Child, surgical intervention, Young Adult
R Package for Pediatric Complex Chronic Condition Classification
Tags: 0 (Enzyme Inhibitors), 0 (Lamin Type A), 0 (Piperidines), 0 (prelamin A), 0 (Pyridines), 2018, Adolescent, Adult, Brazier J, Campbell SE, Cause Of Death, Child, Cohort Studies, D'Agostino Sr RB, EC 2.7.4.- (farnesyl phosphate kinase), EC 2.7.4.- (Phosphotransferases (Phosphate Group Acceptor)), Enzyme Inhibitors/therapeutic use, Female, Gordon LB, Humans, IOW153004F (lonafarnib), JAMA., July 2018 List, Kaplan-Meier Estimate, Kieran MW, Kleinman ME, Lamin Type A/biosynthesis/metabolism, Male, Massaro J, Phosphotransferases (Phosphate Group Acceptor)/antagonists & inhibitors, Piperidines/therapeutic use, Post-Translational, Progeria/drug therapy/genetics/mortality, Protein Processing, Pyridines/therapeutic use, Shappell H, Young Adult
End-of-life decisions in perinatal care: A view from health-care providers in Mexico
Tags: 2015, Abortion, Adult, Aged, Alvarez-del-Rio A, Attitude Of Health Personnel, Attitude To Death, Decision Making, Euthanasia, Female, Fetal Diseases, Grether P, Humans, Induced/psychology, Infant, Lisker R, Loria A, Male, Mexico, Middle Aged, Newborn, Nurses/psychology, Palliative Care/psychology, Passive/psychology, Perinatal Care, Perinatal Death, Physicians/psychology, Pregnancy, Religion, Salud Publica De Mexico, Social Workers/psychology, Terminal Care/psychology, Young Adult
Advance directives and do-not-resuscitate orders in patients with cancer with metastatic spinal cord compression: advanced care planning implications.
Tags: 2010, 80 And Over, Adult, Advance Directives/lj [Legislation & Jurisprudence], Aged, Backlog, Bianty J, Bruera E, Communication, DNAR, Female, Guo Y, Health Planning/lj [Legislation & Jurisprudence], Humans, Journal Article, Journal of Palliative Medicine, Konzen B, Male, Middle Aged, Neoplasms/pa [Pathology], Palliative Care/lj [Legislation & Jurisprudence], Palliative Care/ut [Utilization], Palmer JL, Physician-patient Relations, Resuscitation Orders/lj [Legislation & Jurisprudence], Shin Ki, Spinal Cord Compression/et [Etiology], Spinal Cord Compression/pa [Pathology], Spinal Neoplasms/co [Complications], Spinal Neoplasms/sc [Secondary], United States, Young Adult
Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…
Tags: 2016, Adolescent, Archives of Disease in Childhood, Beringer A, Child, Child Preschool, Disabled Children/psychology, Family, Female, Fletcher M, Harris N, Hospice, Humans, Infant, Internet, July 2016 List, Longitudinal Studies, Male, Outcome, Palliative Care, Parents, Parents/psychology, Power (psychology), Quality Of Life, Quality Of Life/psychology, Social Support, Surveys And Questionnaires, United Kingdom, Young Adult