Browse Items (237 total)
- Tags: Young Adult
Level of purposeful hand function as a marker of clinical severity in Rett syndrome
Tags: 2010, Adolescent, Adult, Age Factors, Bebbington A, characteristics, Child, Child Preschool, Cross-sectional Studies, Databases as Topic, Developmental Medicine and Child Neurology, Downs J, Female, Genotype, Ghosh S, Hand, Humans, Jacoby P, Kaufmann W E, Leonard H, Methyl-CpG-Binding Protein 2, Motor Activity, Mutation, Phenotype, Registries, Rett syndrome, Severity Of Illness Index, tone and motor problems, Trajectory, Video Recording, Walking, Williams A, Young Adult
Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study
Transition from children's to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison
Quantifying physical decline in juvenile neuronal ceroid lipofuscinosis (Batten disease)
Tags: 2011, Adams H, Adolescent, Adult, Analysis of Variance, Augustine E F, Beck C A, Child, Child Preschool, Cialone J, Cross-sectional Studies, Deblieck E A, Disabled Persons, Disease Progression, Dure L S, Genotype, Homozygote, Humans, Kwon J M, Levy E, Marshall F J, Membrane Glycoproteins, Mink J W, Molecular Chaperones, Mutation, NCL3, Neurology, Neuronal Ceroid-Lipofuscinoses, Neuropsychological Tests, Newhouse N J, Prospective Studies, Ramirez-Montealegre D, Regression Analysis, Reproducibility of Results, Rose K R, Rothberg P G, scale development, tone and motor problems, tool development, UBDRS, Vierhile A, Young Adult
Impact of palliative care on end-of-life care and place of death in children, adolescents, and young adults with life-limiting conditions: A systematic review
Experience of Perinatal Death From the Father's Perspective
The prevalence and phenomenology of repetitive behavior in genetic syndromes
Tags: 2009, Adolescent, Adult, Angelman Syndrome/epidemiology/psychology, Arron K, behavioral problems, Berg K, Burbidge C, characteristics, Child, Child Preschool, Cri-du-chat, Cri-du-Chat Syndrome/epidemiology/psychology, De Lange syndrome, De Lange Syndrome/epidemiology/psychology, Female, Fragile X Syndrome/epidemiology/psychology, Humans, Intellectual Disability/epidemiology/genetics/psychology, Journal of Autism and Developmental Disorders, London, Male, Middle Aged, Moss J, Oliver C, Phenotype, Prader-Willi Syndrome/epidemiology/psychology, Prevalence, repetitive behavior, Stereotyped Behavior, Surveys And Questionnaires, Syndrome, tone and motor problems, Trajectory, Young Adult
Behavioural phenotype of Cornelia de Lange syndrome: case-control study
Tags: 2008, Adolescent, Adult, Arron K, Autistic Disorder/psychology, behavioral problems, Case-Control Studies, characteristics, Child, Child Preschool, Communication Disorders/psychology, Compulsive Behavior/psychology, De Lange syndrome, De Lange Syndrome/psychology, Female, global behavior disorder, Hall S, Humans, Male, Oliver C, Phenotype, Sloneem J, Surveys And Questionnaires, The British Journal of Psychiatry, Trajectory, Young Adult
Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program
Tags: 2018, Adult, Byrne M, Daho M, Female, Foe G, Humans, Infant, Intensive Care, Journal Of Perinatology, Male, Neonatal/og [Organization & Administration], New York, Newborn, November 2019 List, Palliative Care/mt [methods], Parents/px [psychology], Parravicini E, Patient Care Team/og [Organization & Administration], Patient Comfort/st [Standards], Practice Guidelines As Topic, Prospective Studies, Qualitative Research, Steinwurtzel R, Surveys And Questionnaires, Young Adult
Discontinuation of follow-up care for young people with complex chronic conditions: conceptual definitions and operational components
Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals
Tags: 2021, Adolescent, Age Factors, Antiel RM, Biopsy, Blinman TA, Camazine MN, Catheterization, Child, Chronic Disease, Eghtesady P, Ethnicity, February 2022 List, Feudtner C, Hall M, Hospitalization, Infant, International Classification of Diseases, Lam SK, Nance ML, Newborn Infant, pediatric hospitals, Pediatrics, Preschool Child, Prosthesis Implantation, Race Factors, Retrospective Studies, Salvage Therapy, Surgical Procedures, Operative, Terminal Care, Traynor MD, United States, Young Adult
Responsiveness of the motor function measure in neuromuscular diseases
Tags: 2012, Adolescent, Adult, Aged, Archives Of Physical Medicine And Rehabilitation, Berard C, Child, Disability Evaluation, Ecochard R, Female, Fermanian J, Girardot F, Humans, Iwaz J, Male, MFM, Middle Aged, Mobility Limitation, motor function measure, Motor Skills, Muscular Dystrophy Duchenne/physiopathology/rehabilitation, Neuromuscular Diseases/physiopathology/rehabilitation, Payan C, Perception, Physical Therapy Modalities, Prospective Studies, Q3 conditions, scale development, SMA1, tone and motor problems, tool development, Vuillerot C, Young Adult
Advances in pediatric psychooncology
Tags: 2020, Adult, Attention, Bereavement, cancer center, Cancer Patient, Child, Childhood Cancer, chimeric antigen receptor T-cell immunotherapy, Current Opinion In Pediatrics, Devine K A, Distress Syndrome, evidence based practice center, hereditary tumor syndrome, Human, Infant, Oncology 2020 List, outcome assessment, Palliative Therapy, patient reported outcome, Psycho-Oncology, psychosocial care, Review, Sibling, Survivorship, Thompson A L, toddler, Wiener L, Young Adult
Trends in the aggressiveness of pediatric cancer near the end-of-life
Tags: 2018, Adult, aggressiveness, Artificial Ventilation, Cancer Patient, Child, Childhood Cancer, conference abstract, Controlled Study, Death, Diagnosis, Female, Fushimi K, Hematologic Malignancy, Human, Intubation, Japan, Major Clinical Study, Male, Matsumoto K, Oncology 2019 List, Pediatric Blood and Cancer, Resuscitation, School Child, Shinjo D, Terminal Care, Yotani N, Young Adult
Children with life-shortening conditions are denied the support they need, says charity
Are we on the same page? Exploring pediatric patients' involvement with advance care planning
Tags: 2023, Aasen ERHV, acquired immune deficiency syndrome, Adolescent, Adult, Advance Care Planning, Caregiver, Child, Cystic Fibrosis, Emotion, Female, Human, Journal of Pain and Symptom Management, June 2022 List, Lee A, Male, Medline, Neurology, oSovik ML, outcome assessment, Palliative Therapy, Patient Participation, pediatric patient, Randomized Controlled Trial (topic), Review, Stordal K, Systematic Review, Young Adult
Use of paclitaxel to successfully treat children, adolescents, and young adults with Kaposi sarcoma in southwestern Tanzania
Tags: 2021, 2023 SE5 - Low Resource Setting, Adinani H, Adolescent, Adult, antiretroviral therapy, antiretrovirus agent/dt [Drug Therapy], Article, Bacha J, bleomycin/cb [Drug Combination], bleomycin/dt [Drug Therapy], bleomycin/iv [Intravenous Drug Administration], Campbell L, cancer combination chemotherapy, Cancer Palliative Therapy, Cancer Recurrence, Cancer Survival, Child, Children, Cohort Analysis, dexamethasone/dt [Drug Therapy], doxorubicin/cb [Drug Combination], doxorubicin/dt [Drug Therapy], drug contraindication, El-Mallawany NK, Female, Follow Up, Human, Human immunodeficiency virus infection/dt [Drug Therapy], Kaposi sarcoma/dt [Drug Therapy], lack of drug effect, long term survival, Major Clinical Study, Male, Mehta P, multiple cycle treatment, Paclitaxel, paclitaxel/dt [Drug Therapy], Quality Of Life, Retrospective Study, Slone J, Tanzania, treatment duration, Treatment Outcome, Treatment Planning, trend study, vincristine/cb [Drug Combination], vincristine/dt [Drug Therapy], vincristine/iv [Intravenous Drug Administration], virus load, Young Adult
Multidiciplinary approach of transition into home care for peadiatric and AYA end-of life cancer patients: A single center experience
Tags: 2018, Adolescent, Adult, Arakawa A, cancer center, Cancer Patient, Cancer Staging, Child, Clinical Article, conference abstract, Controlled Study, Female, Home Care, Human, Ishiki H, Ishimaru S, Kumamoto T, Male, Nakajima M, Ogawa C, Oncology 2019 List, Pediatric Blood and Cancer, Retrospective Study, Satomi E, Shimizu M, Shirakawa N, Social Worker, Sonoda T, time of death, Young Adult
Development of an in-home standardized end-of-life treatment program for pediatric patients dying of brain tumors
Tags: 2013, Adolescent, Arland LC, Backlog, Brain Neoplasms, Child, Colorado, Female, Foreman NK, Health Personnel, Hendricks-Ferguson VL, home care services, Hospice Care, Hospital Mortality, Humans, Infant, Journal Article, Journal for Specialists in Pediatric Nursing, Length Of Stay, Madden JR, Male, Newborn, Palliative Care, Patient Admission, Pearson J, Pediatric Nursing, Preschool, Program Development, Program Evaluation, Retrospective Studies, Terminal Care, Young Adult
Digital Clinical Communication for Families and Caregivers of Children or Young People With Short- or Long-Term Conditions: Rapid Review
"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer
Tags: 2020, Adolescent, Adult, Advanced Cancer, Advanced Practice Nurse, Aged, al-Awamer A, Article, Avery J, Canada, Cancer Palliative Therapy, care behavior, clinician parent communication difficulty, counter transference, D'Agostino N M, Experience, Family, Female, Geist A, Gupta A, Health Personnel Attitude, Human, Journal of Oncology Practice, Kassam A, Kawaguchi S K, Mahtani R, Male, Mazzotta P, medical oncologist, Mosher P J, Oncology 2020 List, Perception, Physician, psychiatrist, Qualitative Research, radiation oncologist, Samadi M, Semi Structured Interview, Srikanthan A, Tam S, tertiary care center, Thematic Analysis, theoretical study, Young Adult, Zimmermann C
Prevalence and Incidence of Anxiety and Depression among Children, Adolescents, and Young Adults with Life-Limiting Conditions: A Systematic Review and Meta-analysis
Tags: 2019, Adolescent, Adult, anxiety, Article, Barker MM, Beresford B, Bland M, Child, data extraction, Depression, Embase, Female, Fraser LK, Human, Human Tissue, Incidence, Interview, JAMA Pediatrics., Male, Medline, meta analysis, Monitoring, Organisation for Economic Co-operation and Development, Prevalence, psychologic assessment, Psycinfo, Regression Analysis, September 2019 List, synthesis, Systematic Review, Young Adult
Advancing Advance Care Planning: Evaluating a Revised Version of Voicing My CHOiCES
Tags: 2024, Adolescent, Adult, Advance Care Planning, Article, Bedoya S, Child, Ciampa D, Female, Frediani J, Gordon M, Human, identifiable information, Journal of Palliative Medicine, Kasper K, Male, March List 2025, Moynihan L, Pao M, Quality Of Life, Ruble K, Structured Interview, Wiener L, Young Adult, Zabokrtsky K
Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
Tags: 2019, Adaptation, Adolescent, Anthropology, Beecham E, Bluebond-Langner M, Brain Neoplasms/*psychology, Cancer, Child, Children, Coping, Cultural, enduring, Experiences, Female, Hargrave D, Health, Humans, Illness and Disease, Infant, Langner R, lived experience, Male, meta-ethnogrpahy, Metasynthesis, Method: interpretive methods, Oncology 2019 List, Parents/*psychology, Preschool, Psychological, psychosocial aspects, Qualitative Health Research, Qualitative Research, qualitative. Geographic: Taiwan, Quality Of Life, Quality of Life/*psychology, Resilience, Resistance, Survivorship, Young Adult
A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed Study
Tags: 2024, Adolescent, Agosto C, Albanesi B, Amarri S, Article, Avagnina I, Barbugian E, Basile R, Bellagamba O, Bellini F, Beltrami C, Benini F, Bignamini E, Bolognani M, Campagna M, Carraro C, Catalano G, Catalano I, Celentano L, Child, Controlled Study, De Marinis MG, De Tommasi V, De Zen L, Di Nunzio S, Diagnosis, Divisic A, Dolcini A, family support, Fasson A, Franchi F, Ghiraldo G, Giacomelli L, Grigolon E, Health Care Personnel, Home Care, Human, Iadelica A, Infant, Italy, Journal of Palliative Medicine, Lazzarin P, Maghini I, Manfredini L, Marinetto A, Maternal care, Mazzoni E, Mercante A, Michelotto E, Mirone R, Molinaro G, Moliterni P, Moro N, October List 2024, Orofino R, Palliative Therapy, Paone G, Papa S, Patient Referral, Pediatrician, Pellegatta F, Peruselli C, Piccolruaz UV, Prenatal Care, Raspi M, Roverato B, Salata M, Santini A, Schiavon B, Soffritti S, Taucar V, terminal disease, Thaler M, Therapy, Tornesello A, Uez F, Vaccher S, Vezzoli C, Young Adult, Zanin A, Ziggiotto S
Young adults as users of adult healthcare: experiences of young adults with complex or life-limiting conditions
An Exploratory Study into the Experience of Health Care Professionals Caring for Adolescents and Young Adults with Incurable Cancer
Tags: 2019, Adolescent, Adult, Article, Australia, Berger I, cancer center, challenges, enablers, Exploratory Research, Health Care Personnel, Health care professionals, Human, incurable disease, Joubert L, Journal of adolescent and young adult oncology., multidisciplinary, Oncology 2019 List, Semi Structured Interview, Thompson K, Young Adult
An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…
Tags: 2016, Acute Pain/therapy, Adolescent, Adult, Advance Directives, Aged, Attitude Of Health Personnel, Bidet G, Canada, Child, Child Preschool, Daoust L, Ducruet T, Duval M, Female, Humans, Humbert N, Infant, Infant Newborn, Journal of Palliative Medicine, Male, March 2016 List, Medical Staff Hospital/psychology, Middle Aged, Nursing Staff Hospital/psychology, Palliative Care/standards, Pediatric Nursing/standards, Practice Guidelines As Topic, Respiratory Distress Syndrome Adult/therapy, Surveys And Questionnaires, Toledano B, Young Adult
What constitutes meaningful engagement for patients and families as partners on research teams?
Tags: 2018, 2023 SE1 - Parent Perspectives, Adult Aged, Aged, Attitude To Health, Black A, Canada, Caregivers, Chang W, Charlton SG, Family and Patient Participation, family engagement, Hamilton C, Journal of Health Services Research & Policy, McNamee K, patient engagement in research, Patient experience, patient-oriented research, Psychology, Qualitative, Research Subjects, Researcher-Subject Relations, Strain K, Wallsworth C, Young Adult
Determinants of sleep disturbances in Rett syndrome: Novel findings in relation to genotype
Tags: 0 (Methyl-CpG-Binding Protein 2), 2016, Adolescent, Adult, American Journal of Medical Genetics Part A, Anderson B, Boban S, characteristics, Child, Child Preschool, Downs J, Epilepsy/di [diagnosis], Epilepsy/ge [Genetics], Epstein A, Genetic Association Studies, Genotype, Humans, Infant, Infant Newborn, Leonard H, Methyl-CpG-Binding Protein 2/ge [Genetics], Middle Aged, Murphy N, Mutation, Phenotype, Rett syndrome, Rett Syndrome/di [Diagnosis], Rett Syndrome/ge [Genetics], Rett Syndrome/pp [Physiopathology], Severity Of Illness Index, sleep disturbance/disorders, Sleep Wake Disorders/di [Diagnosis], Sleep Wake Disorders/ge [Genetics], Trajectory, Wong K, Young Adult
Relationships and Resources Supporting Children With Serious Illness and Their Parents
Association between opioid prescribing patterns and opioid overdose-related deaths
Tags: 2011, Acute Disease, Adolescent, Adult, Aged, Analgesics, Backlog, Bair MJ, Blow FC, Bohnert AS, Case-Control Studies, Chronic Disease, Cohort Studies, Drug Prescriptions/statistics & numerical data, Female, Ganoczy D, Humans, Ilgen MA, JAMA, Journal Article, Male, McCarthy JF, Middle Aged, Opioid/administration & dosage/poisoning, Overdose/epidemiology, Pain/drug Therapy, Physician's Practice Patterns/statistics & numerical data, Risk, United States/epidemiology, Valenstein M, Veterans/statistics & numerical data, Young Adult
Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients
Tags: 2018, Adult, Advance Care Planning, Advance Care Planning/statistics & Numerical Data, Advance Directives, American journal of hospice & palliative care, April 2019 List, Attitude Of Health Personnel, Bowman M, Clergy/psychology, Decision Making, Female, Health Personnel/psychology, hospital-specific palliative care issues, Humans, Living Wills, Living Wills/psychology/statistics & numerical data, Male, Middle Aged, physician patient communication, Religion, Spirituality, St Cyr S, Stolf I A, Terminal Care/psychology, Young Adult
Development and validation of the Communicating with Family about Brain Death Scale
Tags: 2016, Adolescent, Adult, Attitudes, Brain Death/ diagnosis, brain-dead organ donation, Bresnahan M, communicating with family about brain death, Communication, Cross-sectional Studies, Decision Making, End-of-life Decision Making, Factor Analysis, Family, Female, first-person organ donation consent laws, Health Knowledge, Humans, Journal Of Health Psychology, Male, March 2018 List, Middle Aged, misconceptions about brain death, Practice, Reproducibility of Results, statistical, Tissue and Organ Procurement, Young Adult, Zhuang J
Recent trends in cerebral palsy survival. Part II: individual survival prognosis
Tags: 2014, Adolescent, Adult, Backlog, Brooks JC, California, Cerebral Palsy, Child, Developmental Medicine and Child Neurology, Disabled Persons, Female, Humans, Infant, Journal Article, Kaplan-Meier Estimate, Life Expectancy, Male, Mortality, Preschool, Prognosis, Rosenbloom L, Shavelle RM, Strauss DJ, Tran Linh M, Wu YW, Young Adult
Meditation experience predicts less negative appraisal of pain: electrophysiological evidence for the involvement of anticipatory neural responses
Tags: 2010, Adult, Analysis of Variance, Backlog, Brain Mapping, Brown CA, Cerebral Cortex/physiology, Dose-Response Relationship, Electroencephalography/methods, Evoked Potentials, Female, Humans, Jones AK, Journal Article, Lasers/adverse effects, Male, Meditation/methods, Middle Aged, Pain, Pain Measurement/methods, Pain Threshold/physiology, Pain/etiology/physiopathology/psychology/rehabilitation, Radiation, Regression Analysis, Somatosensory/physiology, Young Adult
PAEDIATRIC TO ADULT PALLIATIVE CARE - IS THERE A PRESCRIPTION FOR TRANSITION?
Tags: 2024, Adult, Archives of Disease in Childhood, Brown K, Child, conference abstract, Degenerative Disease, Drug Therapy, Health Care Personnel, Human, Life Expectancy, McCusker K, muscarinic receptor blocking agent, October List 2024, Palliative Therapy, prescription, Prevalence, Scotland, Seizure, Spasticity, Therapy, Young Adult
Volunteer Activity In Specialist Paediatric Palliative Care: A National Survey
Tags: 2015, Adolescent, Adult, BMJ Supportive & Palliative Care, Bravery R, Burbeck R, Candy B, Cross-sectional Study, England, Female, Health Care Survey, Home Care, Hospice, Hospice Care, Hospital Volunteer, Human, Internet, Low J, Male, Organization And Management, Palliative Therapy, Pediatrics, Procedures, Questionnaire, Sampson E L, Scott R, September 2017 List, Specialization, Statistics And Numerical Data, Young Adult
Parental assessment of pain coping in individuals with intellectual and developmental disabilities
Tags: 2011, Adaptation, Adolescent, Adult, Backlog, Breau LM, Burkitt CC, Child, Developmental Disabilities/complications/psychology, Female, Humans, Intellectual Disability/complications/psychology, Journal Article, Male, Pain Measurement, Pain/complications/psychology, Parents/psychology, Preschool, Psychological, Questionnaires, Research in Developmental Disabilities, Social Support, Young Adult, Zabalia M
Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach
Tags: 2009, Adolescent, Adolescent Transitions, Aimaretti G, Allochis G, Backlog, Baldelli R, Bellone S, Binotti M, Bona G, Cadario F, Clinical Endocrinology, Diabetes Mellitus, Esposito S, Female, Glycosylated/metabolism, Hemoglobin A, Humans, Journal Article, Patient Satisfaction, Patient Transfer/methods, Pediatrics, Prodam F, Questionnaires, Retrospective Studies, Trada M, Type 1/metabolism/therapy, Young Adult