Browse Items (145 total)
- Tags: Clinical Article
"I don't want this to be in my biography": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease
Tags: 2018, August 2018 List, Becker G, Bergstrasser E, Cause Of Death, Child, Clinical Article, Comfort, conference abstract, Diagnosis, Flury M, friend, grandchild, grandparent, Human, literature, Male, Memory, Oncology, Orellana-Rios C, Palliative Medicine, Palliative Therapy, Qualitative Research, Semi Structured Interview, son, Switzerland, Terminal Care
"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice Care
Tags: 2023, 2023 SE5 - Low Resource Setting, Adolescent, American Journal Of Hospice And Palliative Care, Article, Clinical Article, Consensus, Controlled Study, Education, Female, Hospice Care, Hospices, Human, Indian, inheritance, juvenile, Khosla N, Palliative Therapy, Place Of Death, Qualitative Research, Quality Of Life, South Asian, Thematic Analysis, university student, vulnerable population
"The medicine is the easy part": Pediatric physicians' emotional labor in end-of-life care
Tags: 2023, Article, buffer, Burnout, Child, Clinical Article, Drawing, emotional support, Female, Gengler AM, Human, Interview, Male, Medical Education, October List 2042, Pediatrician, Physician, responsibility, seashore, SSM - Qualitative Research in Health, Terminal Care, University Hospital, Wellbeing, work environment
“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
A cross-sectional controlled developmental study of neuropsychological functions in patients with glutaric aciduria type i
Tags: 2015, Adolescent, Adult, Article, Barry Albright Dystonia Scale, Boy N, Burgard P, characteristics, Child, Clinical Article, Cognition, cognitive development, continuous performance test, Controlled Study, Cross Sectional Study, Dystonia, dystonia/di [Diagnosis], enzyme deficiency, Female, Garbade S F, Glahn E M, Glutaric acidemia type I, glutaric aciduria type I, Haege G, Heringer J, Hoffmann G F, Human, Information Processing, Kolker S, Male, Metabolic Disorder, motor dysfunction, motor performance, neurologic disease assessment, newborn screening, Orphanet Journal Of Rare Diseases, response time, tone and motor problems, Trajectory, visual memory, visuomotor coordination, working memory
A One Day Paediatric Palliative Care Study Day Improves Skills
A possibility for strengthening family life and health: Family members' lived experience when a sick child recieves home care in sweden
Tags: 2018, Attention, Castor C, Child, Childhood Cancer, Clinical Article, conference abstract, December 2018 List, Expectation, Family Life, Father, Female, genetic transcription, Hansson H, Home Care, Human, Interview, Kristensson HI, Landgren K, lion, Male, Mother, Nonhuman, Pediatric Blood and Cancer, Personal Experience, responsibility, Sibling, Sweden, welfare, Wellbeing
A psychological experience assessment protocol of parent caregivers in paediatric palliative care
Tags: 2023, Adult, Annals Of Medicine, Article, Caregiver, Child, Clinical Article, Coping Behavior, Coping Strategy Questionnaire, February List 2024, Human, Nogueira AJ, Palliative Therapy, Parent, Portugal, psychologic assessment, Questionnaire, Ribeiro MT, Semi Structured Interview, Social Support, Therapy, United Kingdom, VULNERABILITY
A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit
Tags: 2023, Adult, Article, Child, Clinical Article, Content Analysis, Decision Making, Diagnosis, Edner A, February List 2024, Funkquist EL, Health Care Personnel, Human, Infant, Interview, Journal of Perinatal & Neonatal Nursing, Lindquist A, Neonatal Intensive Care Unit, Newborn, Newborn Intensive Care, Parent, parenthood, Pilot Study, Powerlessness, Qualitative Research, shame, Terminal Care
A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease
Tags: 2017, Adolescent, Adult, Article, auditory hallucination, CAG repeat, characteristics, Child, Clinical Article, Controlled Study, Epping E, Espe-Pfeifer P, Female, Health Survey, Hudgell D, Human, Huntington chorea, juvenile, Juvenile Huntington disease, leg pain, Male, Martin E, Mathews K, Moser A D, Nance M, Neurodegenerative Disease Management, Nopoulos P, Pain, Priority Journal, pruritus, psychosis, Quarrell O, skin irritation, sleep disorder, sleep disturbance/disorders, tic, Trajectory, visual hallucination, Zhorne L
Advanced care planning in cystic fibrosis
Tags: 2017, 7782-44-7 (oxygen), Altstein L, Bach K, chest tube, Child, Clinical Article, Comfort, Cystic Fibrosis, durable power of attorney, Female, Forced Expiratory Volume, Friedman D, Georgiopoulos A, hemoptysis, Hospitalization, Human, Islam S, January 2018 List, Lifespan, Linnemann RW, living will, Male, Moskowitz SM, Outpatient, oxygen, Palliative Therapy, Pediatric Pulmonology, Pilot Study, pneumothorax, Practice Guideline, School Child, St John A, thinking, Yonker LM
Aims And Tasks In Parental Caregiving For Children Receiving Palliative Care At Home: A Qualitative Study
Tags: 2017, Bosman DK, Child, Child Parent Relation, Clinical Article, Colenbrander DA, Controlled Study, European Journal of Pediatrics, Family Life, Grootenhuis MA, Home Care, Human, Interview, Kars MC, March 2017 List, Palliative Therapy, Personal Experience, Qualitative Research, Schouten-Van Meeteren AYN, Sound, Symptom, Thematic Analysis, van Delden JJ, Verberne LM
An Audit Analysing The Standard Of Patient Care And Service Provision In Sppc At A Tertiary Hospital And Hospice
Tags: 2023, Archives of Disease in Childhood, Child, Clinical Article, conference abstract, Coulson-Smith P, Durrant E, Female, Hospice Care, Hospices, Human, Male, manager, October List 2030, Palliative Therapy, Patient Care, patient coding, Patient Referral, Place Of Death, Renton K, Sample Size, staff training, tertiary care center, Warlow T
Analysis Of Death And Palliative Care In A Neonatal Intensive Care Unit
Tags: 2017, Analgesia, Analgesic Agent, Article, Ceccon M E J, Clinical Article, De Barbosa S M M, Descriptive Research, Female, Follow Up, Hospitalization, Human, Male, Marcola L, Neonatal Intensive Care Unit, Newborn, Newborn Death, October 2017 List, Pain Assessment, Palliative Therapy, Polastrini R T V, Prematurity, Resuscitation, Retrospective Study, Revista Paulista de Pediatria, Sedation, Sedative Agent, Zoboli I
Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis
Tags: 2023, Article, Atkin K, care behavior, Caregiver, Child, Clinical Article, Content Analysis, Diagnosis, Ewing G, Father, February List 2024, Female, Fisher V, Fraser LK, Grande G, Human, Male, Needs Assessment, Palliative Medicine, Palliative Therapy, Parent, School Child, Secondary Analysis, social media, special situation for pharmacovigilance
Assessing well-being in pediatric palliative care: A pilot study about views of children, parents and health professionals
Tags: 2023, Article, Bolance C, Camprodon-Rosanas E, Child, Clinical Article, Controlled Study, Cross-sectional Study, Demography, Emotion, emotional well-being, Female, Guillen M, health practitioner, Human, Limonero JT, Male, May List 2023, Navarro Vilarrubi S, Palliative And Supportive Care, Palliative Care, Palliative Therapy, Perception, Pilot Projects, Pilot Study, psychologic assessment, School Child, Toro-Perez D, vision, Visual Analog Scale, Wellbeing
Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation
Tags: 2019, Adolescence, Adolescent, Adult, Albrecht U V, Anthropometry, Article, Breathing, Child, chronic lung disease, Clinical Article, Controlled Study, Cystic Fibrosis, Disability, Dittrich A M, Dopfer C, February 2020 List, Female, Fuge J, Hansen G, Human, JMIR mHealth and uHealth, Junge S, Life Expectancy, life satisfaction, lung function, Male, mobile application, mobile phone, Nolte H, Pieper K, Quality Of Life, Questionnaire, responsibility, Ringshausen F C, Rudolf I, Sauer-Heilborn A, Self Care, Tummler B, von Jan U, Young Adult
Attempting to Define Clinical Productivity Metrics among Pediatric Palliative Care Services at Academic Children's Hospitals
Tags: 2019, Article, billing and coding, Brook I, Burnout, Child, Clinical Article, clinical productivity, Convenience Sample, Female, Fossa M, Human, Human Tissue, Journal of Palliative Medicine, Kang T, Leadership, Mahoney D P, Male, October 2019 List, Palliative Therapy, Pediatric Palliative Care, productivity, Program Development, sustainability, United States, workload
Autism traits in children and adolescents with Cornelia de Lange syndrome
Tags: 2014, Aberrant Behavior Checklist, adaptive behavior, Adolescent, Adult, Age, American Journal of Medical Genetics Part A, Article, Autism, behavior disorder, Behavioral phenotype, behavioral problems, characteristics, Checklist, Child, Childhood Autism Rating Scale, Clark B, Clinical Article, Communication, communication disorder, compulsion, Cornelia de Lange syndrome, daily life activity, De Lange syndrome, Diagnosis, Disease Severity, Emotion, Female, Grados M A, Human, hyperactivity, Intellectual Impairment, Interpersonal Communication, Irritability, Kline A D, Landy-Schmitt C, Language, lethargy, limb, maladjustment, Male, Phenotype, Priority Journal, psychological rating scale, Rating Scale, Repetitive behaviors, rigidity, Skill, social cognition, Socialization, Specht M, Srivastava S, stereotypy, Trajectory, Verbal Communication, Vineland Adaptive Behaviors Scales
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
Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study
Tags: 2019, Adult, Article, Awareness, Child, Childhood Cancer, Clinical Article, Controlled Study, De Clercq E, Education, Elger B, Female, Human, Journal Of Pediatric Oncology Nursing, Male, Nurse, Oncologist, Oncology 2019 List, outpatient care, Palliative Therapy, personnel shortage, Politics, Qualitative Research, Rakic M, Reimbursement, Rost M, Social Worker, Switzerland, Thematic Analysis, Wangmo T
Bereaved Parents' Perspective on Communication of Transition to Palliative Care in Pediatric Oncology - Hungarian Experience
Tags: 2022, Bereavement, Child, Childhood Cancer, Clinical Article, communication protocol, conference abstract, Consultation, Female, Foldesi E, genetic transcription, Hauser P, Hegedus K, Human, Hungary, Male, March List 2023, Nonverbal Communication, Nyiro J, Palliative Therapy, Pediatric Blood and Cancer, Semi Structured Interview, Terminal Care, Zorgo S
Bereavement follow-up: Listening and learning
Tags: 2018, Bereavement, Child, Clinical Article, conference abstract, Consterdine K, Consultation, Diagnosis, Female, Follow Up, genetic transcription, Human, Intensivist, Learning, Male, Memory, November 2018 List, Nurse, Pediatric Critical Care Medicine, Ryan C, Staff, Subramanian G, Terminal Care
Brazilian Neonatal Nurses' Palliative Care Experiences
Tags: 2018, Article, Borges Silva AR, Brazil, Carmona EV, Cleveland LM, Clinical Article, Controlled Study, Convenience Sample, Darilek U, de Castro de Oliveira F, Developing World 2018 List, Education, Exploratory Research, Female, genetic transcription, Grief, Human, Human Experiment, Infant, Interview, Male, Neonatal Intensive Care Unit, Neonatal Nurse, Newborn, Palliative Therapy, Quality Of Life, quality of nursing care, registered nurse, teaching hospital, The Journal Of Perinatal & Neonatal Nursing, Thematic Analysis, vulnerable population
Care with love: Parents' experiences in caring their child with cancer under palliative care
Tags: 2018, Allenidekania A, Caregiver, Child, Clinical Article, conference abstract, daily life activity, Data Analysis, Fatigue, Fear, Female, Human, Interview, jealousy, Male, Malignant Neoplasm, Nafratilova M, Nurse, Oncology 2018 List, Palliative Therapy, Pediatric Blood and Cancer, Phenomenology, primary medical care, Sibling, Uncertainty, Wanda D
Caregiver-reported impact on quality of life and disease burden in patients diagnosed with metachromatic leukodystrophy: Results of an online survey and a qualitative interview
Tags: 2020, Adolescent, Adult, April 2020 List, biomedical technology assessment, Bone Marrow Transplantation, Calcagni C, Caregiver, Child, Clinical Article, conference abstract, Controlled Study, Disease Burden, enzyme replacement, European Quality of Life 5 Dimensions Questionnaire, Female, Follow Up, France, Germany, Howie K, Human, Human Tissue, Infant, Institutional Review, Interview, investment, juvenile, Male, Metachromatic Leukodystrophy, Molecular Genetics and Metabolism, Multicenter Study, Palliative Therapy, Pang F, Patient Advocacy, Patient Care, preliminary data, Quality Of Life, Recall, Sample Size, Shapovalov Y, Walz M, Wellbeing, Wilds A
Caring for dying children in the paediatric intensive care unit [PICU]
Tags: 2018, Child, Child Parent Relation, Clinical Article, conference abstract, Critically Ill Patient, Female, Human, intimacy, Male, Mattsson J, Medical Examination, November 2018 List, Nurse, Palliative Therapy, Pediatric Critical Care Medicine, Pediatric Intensive Care Unit, Practice Guideline, Sweden, Terminal Care
Challenges in Pediatric Advance Care Discussions Between Health Care Professionals and Parents of Children with a Life-Limiting Condition: A Qualitative Pilot Study
Tags: 2018, Advance Care Planning, Borasio GD, Child, Clinical Article, conference abstract, Conversation, Daxer M, Death, February 2019 List, Female, Fuehrer M, Germany, Hein K, Heitkamp N, Human, Journal of Pain and Symptom Management, Jox R, Knochel K, Male, Monz A, Morality, Palliative Therapy, Pilot Study, Semi Structured Interview, shared decision making
Changes in the End-of-Life Process in Patients with Life-Limiting Diseases through the Intervention of the Pediatric Palliative Care Team
Characterizing social worker and chaplain interactions with parents of critically ill children with cancer
Tags: 2017, Cancer Epidemiology, Child, Clergy, Clinical Article, Content Analysis, Critically Ill Patient, Doctor Patient Relation, Family Study, Female, Human, Journal Of Clinical Oncology, Lentini N, Male, Martinez E, Michelson K, Mortality, Oncology 2017 List, Palliative Therapy, Pediatric Intensive Care Unit, Social Worker
Child Death And Deterioration Review Group
Tags: 2017, Adoption, Adverse Drug Reaction, Alderton M, Archives of Disease in Childhood, Case Study, Cause Of Death, Child, Child Death, Clinical Article, Controlled Study, Deterioration, Female, Health Care Quality, Human, Learning, Male, Nursing Staff, Palliative Therapy, Perception, Pryde K, September 2017 List, Side Effect, Student, Trust
Children And Young Person Advanced Care Plans In District General Hospitals-who Gets Them?
Children with palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study
Tags: 2023, 2023 SE5 - Low Resource Setting, acute lymphoblastic leukemia/di [Diagnosis], Adolescent, Adult, Anga G, Article, BMC Palliative Care, bronchiectasis/di [Diagnosis], Cerebral Palsy/di [Diagnosis], Child, Child Health Care, Clinical Article, congenital heart disease/di [Diagnosis], congenital malformation/di [Diagnosis], Controlled Study, Descriptive Research, Duke T, dyspnea/co [Complication], Female, germ cell tumor/di [Diagnosis], Guillain Barre syndrome/di [Diagnosis], health care need, Health Care Personnel, Health Care Quality, hemosiderosis/di [Diagnosis], Human, Human immunodeficiency virus infection/di [Diagnosis], Infant, Interview, job experience, Kilalang C, knowledge gap, Male, malignant neoplasm/di [Diagnosis], Medical Record, Melanesia, neuroblastoma/di [Diagnosis], Only Child, Pacific Islands, Pain/co [complication], Palliative Care, Palliative Therapy, Papua New Guinea, Parent, pediatric ward, Preschool Child, pulmonary hypertension/di [Diagnosis], Pulsan F, Qualitative Research, retinoblastoma/di [Diagnosis], School Child, thalassemia/di [Diagnosis], Thematic Analysis, tuberculosis/di [Diagnosis], Vince JD, Watch V
Children's understanding of dying and death: A multinational grounded theory study
Tags: 2023, 2023 SE5 - Low Resource Setting, Adolescent, Adult, Altruism, Article, Child, Clinical Article, Controlled Study, Deshommes T, Downing J, Female, Friebert S, Gassant PYH, genetic transcription, Grossoehme DH, Grounded Theory, Haiti, Human, Interview, Male, McPoland P, Multicenter Study, Only Child, Palliative And Supportive Care, Palliative Therapy, Qualitative Research, Religion, Sheehan DC, Sibling, Stephenson P, thinking, uganda, vocabulary
Clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis
Tags: 2023, 2023 SE5 - Low Resource Setting, Achour A, Article, Ben Youssef S, bicarbonate/dt [Drug Therapy], bicarbonate/pv [Special Situation for Pharmacovigilance], calcitriol/dt [Drug Therapy], calcitriol/pv [Special Situation for Pharmacovigilance], Child, citrate potassium/dt [Drug Therapy], citrate potassium/pv [Special Situation for Pharmacovigilance], Clinical Article, Clinical Feature, Controlled Study, CTNS gene, cystine/ec [Endogenous Compound], cystinosis/di [Diagnosis], cystinosis/dt [Drug Therapy], El Younsi M, exon, Fanconi renotubular syndrome, Female, founder mutation, Gargah T, gene, Gene Deletion, gene mutation, genetic analysis, genetic trait, Hammi Y, heterozygosity, homozygosity, Human, hypothyroidism/dt [Drug Therapy], Infant, infantile nephropathic cystinosis/di [Diagnosis], infantile nephropathic cystinosis/dt [Drug Therapy], Information Processing, Kharrat M, kidney disease/di [Diagnosis], kidney disease/dt [Drug Therapy], M'Rad R, Maazoul F, Male, mercaptamine/dt [Drug Therapy], mercaptamine/pv [Special Situation for Pharmacovigilance], molecular diagnosis, molecular fingerprinting, Only Child, Ouertani I, Palliative Therapy, Pediatric Nephrology, pediatric patient, Prenatal Diagnosis, Preschool Child, Retrospective Study, RNA splicing, Sanger sequencing, thyroid hormone/dt [Drug Therapy], thyroid hormone/pv [Special Situation for Pharmacovigilance], Trabelsi M, Tunisian
Communication and the Appraisal of Uncertainty: Exploring Parents' Communication with Credible Authorities in the Context of Chronic Childhood Illness
Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
Tags: 2024, actigraph, actimetry, Adolescent, April List 2024, Article, BMC Palliative Care, Caregiver, Child, Chronic Disease, Claus B, Clinical Article, Controlled Study, Decision Making, diagnostic procedure, Drug Therapy, Female, Human, Human Experiment, Kubek LA, Male, Palliative Therapy, Prospective Study, protocol, Questionnaire, Questionnaires, School Child, Sleep, sleep efficiency, sleep time, special situation for pharmacovigilance, stage 1 sleep, Therapy, Wager J, wake after sleep onset, Wakefulness, Zernikow B
Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study
Tags: 2019, Adolescent, Adult, Article, Blume ED, Child, Clinical Article, December 2019 List, Female, Human, Hypoplastic Left Heart Syndrome, Journal Of Palliative Care, Male, May R, Medical Care, Morell E, Palliative Therapy, Pediatric Cardiology, Perception, Prenatal Diagnosis, Rajagopal S, Thompson J, thoracic surgeon
Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic
Tags: 2023, 2023 SE3 - Oncology, Article, cancer model, Child, Clinical Article, Collura C, Consultation, Controlled Study, embedding, Female, Greenmyer JR, Health Care Delivery, Hematology, Human, Male, McCarthy SR, Medical Record Review, Ngo T, Outpatient, Palliative Care, Palliative Therapy, Pediatric Blood and Cancer, rank sum test, Referral And Consultation, Retrospective Study, Schiltz B, Smith M, solid tumor