Browse Items (74 total)
- Tags: Surveys And Questionnaires
[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]
A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer…
Tags: 2014, Adolescent, Adult, Advance Care Planning, Advance Care Planning/statistics & Numerical Data, Advance Directive, Advance Directives/psychology, Advance Directives/statistics & Numerical Data, African-american, Anxiety/complications, Anxiety/psychology, Cancer, Communication, Decision-making, Depression/complications, Depression/psychology, End Of Life, Family, Family Intervention, Feasibility Studies, Female, Follow-up Studies, Humans, Journal of Adolescent Health, July 2016 List, Longitudinal Studies, M.E. Lyon, Male, Neoplasms/complications, Neoplasms/psychology, Patient Satisfaction/statistics & Numerical Data, Pediatric Palliative Care, Quality Of Life/psychology, Spirituality, Surveys And Questionnaires, United States, Wang J, Young Adult
A Scale for the Identification of the Complex Chronic Pediatric Patient (PedCom Scale): A Pilot Study
A Study Into The Educational Needs Of Children's Hospice Doctors: A Descriptive Quantitative And Qualitative Survey
Tags: 2004, Amery J, Child, Clinical Competence/st [standards], Communication, Education Medical Continuing/og [organization & Administration], England, Hospice Care, Hospices, Humans, Inservice Training/og [organization & Administration], Lapwood S, May 2017 List, Only Child, Palliative Care, Palliative Care/st [standards], Palliative Medicine, Patient Care Team, Pediatrics/ed [education], Surveys And Questionnaires
A Survey Of Key Opinion Leaders On Ethical Resuscitation Practices In 31 European Countries.
Europe is a patchwork of 47 countries with legal, cultural, religious, and economic differences. A prior study suggested variation in ethical resuscitation/end-of-life practices across Europe. This study aimed to determine whether this…
Tags: 2016, Adult, Askitopoulou H, Bioethics, Bossaert L, Cardiac Arrest, Cardioulmonary Resuscitation/ethics, Child, Child Preschool, December 2016 List, Emergency Care, End-of-life Care, Ethics Medical, Europe, Female, Greif R, Haywood K, Heart Arrest/therapy, Humans, Leadership, Linear Models, Male, Mentzelopoulos SD, Perkins GD, Raffay V, Resuscitation, Surveys And Questionnaires, Terminal Care/ethics, Van de Voorde P, Xanthos T
A survey of the prevalence of stereotypy, self-injury and aggression in children and young adults with Cri du Chat syndrome
Tags: 2002, Adolescent, Adult, Aggression, Aggression/psychology, Behavior, characteristics, Child, Collins M S, Comorbidity, Cornish K, Cri-du-chat, Cri-du-Chat Syndrome/epidemiology, Female, Humans, Journal Of Intellectual Disability Research, Male, Prevalence, Self-Injurious Behavior/epidemiology, self-injury, Stereotypic Movement Disorder/epidemiology, stereotypy, Surveys And Questionnaires, tone and motor problems, Trajectory
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
Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting
Advance Care Planning For Adolescents with Cancer and Their Parents: Study Protocol of the Boost Pacp Multi-Centre Randomised Controlled Trial and Process Evaluation
Tags: 2021, 2021 Special Edition - Oncology, Adolescent, Advance Care Planning, Beernaert K, Bmc Pediatrics, Child, Cohen J, Communication, De Vleminck A, Deliens L, Gilissen J, Humans, Kars MC, Multi-Centre randomised controlled trial, Multicenter Studies as Topic, Neoplasms/therapy, Paediatric oncology, paediatric palliative care, Parent-adolescent communication, Parents, Randomized Controlled Trials as Topic, Surveys And Questionnaires, Terminal Care, van der Werff TBJ, van Driessche A
Advance care planning in adolescents with cystic fibrosis: A quality improvement project
Tags: 2016, Adolescent, Advance Care Planning, Advance Directives, Attitude To Health, Cystic Fibrosis/pp [physiopathology], Cystic Fibrosis/th [therapy], December 2017 List, Female, Forced Expiratory Volume, Humans, Kazmerski TM, Lerch W, Male, Matisko J, Maurer SH, May C, Noninvasive Ventilation, Oxygen Inhalation Therapy, Patient Care Planning, Pediatric Pulmonology, Proxy, Quality Improvement, Schachner D, Severity Of Illness Index, Surveys And Questionnaires, Terminal Care, Weiner DJ, Young Adult
Age-dependent change in behavioral feature in Rubinstein-Taybi syndrome
Tags: 2012, Adolescent, Adult, Age, Aggression, aggressive behavior, anxiety, Behavior, behavioral problems, characteristics, Child, Congenital Anomalies, Depression, Factors, Female, Humans, Infant, Kosaki K, Kosaki R, Kurosawa K, Male, Mizuno S, Okamoto N, Preschool, Rubinstein-Taybi Syndrome, Rubinstein-Taybi Syndrome/di [Diagnosis], Sato Y, Surveys And Questionnaires, Takahashi T, Trajectory, Yagihashi T, Young Adult
An International Study of Caregiver-Reported Burden and Quality of Life in Metachromatic Leukodystrophy
Tags: Child, Quality of Life, 2022, Afriyie A, Barth M, Burden of illness, Caregiver Burden, Caregiver experience, Caregivers, Dillon A, Early-onset, Family, Howie K, Humans, juvenile, Late infantile, Leukodystrophy Metachromatic/Genetics, Metachromatic Leukodystrophy, Mld, November 2022 List, Orphanet Journal Of Rare Diseases, Pang F, Quality Of Life/psychology, Sevin C, Surveys And Questionnaires, Walz M, Wilds A
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
Assessing Ethics Knowledge: Development of a Test of Ethics Knowledge in Neonatology
Tags: 2018, Adult, April 2019 List, Assessment, Berson ER, Cummings CL, Decision Making, Ethics Medical/education, Feldman HA, Female, Geis GM, Humans, Internship And Residency, Journal of Pediatrics, Kesselheim J C, Male, Medical Education, Medical Ethics, milestones, Neonatology/education, professionalism, Psychometrics/education, Surveys And Questionnaires
Associated Factors of Psychological Distress among Japanese NICU Nurses in Supporting Bereaved Families Who Have Lost Children
Tags: 2018, Adaptation Psychological, Adult, Bereavement, Bereavement Care, children's deaths, Female, Hospice Care/psychology, Humans, Infant Newborn, Intensive Care Neonatal, Intensive Care Units Neonatal, Kitao M, Kobe Journal of Medical Sciences, Male, March 2019 List, Neonatal Nursing/education, Nicu, Nurses, Nurses Neonatal/education/psychology, Pediatricians/psychology, Psychological Distress, Setou N, Stress Psychological, Surveys And Questionnaires, Takada S, Yamamoto A
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
Challenges in establishing optimal pediatric palliative care at the university hospital in Slovenia
Consultation of Parents in Actual End-Of-Life Decision-Making in Neonates and Infants
Tags: 2006, Belgium, Bilsen J, Cools F, Critical Illness/th [therapy], Decision Making, Deconinck P, Deliens L, Deschepper R, European Journal of Pediatrics, Gestational Age, Humans, Infant, Infant Newborn, January 2018 List, Life Support Care/px [Psychology], Medical Futility/px [Psychology], Mortier F, Parents/px [psychology], Physician-patient Relations, Provoost V, Ramet J, Retrospective Studies, Surveys And Questionnaires, Terminal Care, Terminal Care/px [psychology], Vandenplas Y, Withholding Treatment
Correlates of maladaptive behavior in individuals with 5p- (cri du chat) syndrome
Tags: 1997, Adjustment Disorders/etiology, Adolescent, Adult, Aggression, Analysis of Variance, behavioral problems, characteristics, Child, Child Preschool, Child Behavior Disorders/etiology, Clarke D J, Cri-du-chat, Cri-du-Chat Syndrome/genetics/psychology, Developmental Medicine and Child Neurology, Dykens E M, Female, Gene Deletion, Humans, hyperactivity, impulsivity, Intellectual Disability/psychology, low mood, Male, Mental Disorders/etiology, Mood, pain behaviors, Psychiatric Status Rating Scales, repetitive language use, Risk Factors, self-injury, Surveys And Questionnaires, Trajectory, Translocation Genetic
Development And Evaluation Of A Palliative Care Curriculum For Cystic Fibrosis Healthcare Providers.
Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for…
Tags:
2016, Altstein
LL, Attitude Of Health Personnel, Buxton D, Curriculum, Cystic Fibrosis, Cystic Fibrosis/psychology, Cystic Fibrosis/therapy, Disease Management, Education, End-of-life Care, Female, Friedman D, Georgiopoulos AM, Health Personnel/education, Health Personnel/psychology, Humans, Journal of Cystic Fibrosis, Linnemann RW, Male, March 2016 List, Middle Aged, Needs Assessment, O’Malley PJ, Palliative Care, Palliative Care/methods, Palliative Care/psychology, Quality Of Life, Surveys And Questionnaires, Terminal Care/methods, Terminal Care/psychology, United States
Development of student competencies for palliative care
Tags: 2019, Adolescent, Adult, Baccalaureate, Carreno S P, Carrillo G M, Clinical Competence, Colombia, Diaz L C, Education, February 2020 List, Female, Gomez O J, Hospice and Palliative Care Nursing/ed [Education], Humans, International Journal of Palliative Nursing, Interviews As Topic, Male, Nursing, Students, Surveys And Questionnaires, Young Adult
Differing needs of mothers and fathers during their child's end-of-life care: secondary analysis of the "Paediatric end-of-life care needs" (PELICAN) study
Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff
Tags: 2018, Arzuaga BH, Attitude Of Health Personnel, Attitudes, Brodsky DD, Cummings CL, Female, Health Knowledge, Hospital/psychology, Humans, Intensive Care Units, Male, Mao W, Medical Staff, Miedema D, Neonatal/statistics & Numerical Data, November 2019 List, Nursing Staff, Pediatric Critical Care Medicine, Practice, Professional-family Relations, Resuscitation Orders/psychology, Retrospective Studies, Surveys And Questionnaires, United States, Withholding Treatment/statistics & Numerical Data, Wraight CL
Dying At Lifes Beginning: Experiences Of Parents And Health Professionals In Switzerland When An ’in Utero' Diagnosis Incompatible With Life Is Made.
The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of…
Tags: 2016, Attitude Of Health Personnel, Decision Making, Female, Fetal Congenital Malformation, Fetus/abnormalities, Fleming V, Gaps, Genetic Counseling/psychology, Humans, Iljuschin I, Interviews As Topic, Male, March 2016 List, Maurer F, Midwifery, Parents/psychology, Parpan F, Pehlke-Milde J, Pregnancy, Prenatal-diagnosis, Surveys And Questionnaires, Switzerland, Temporality, Thematic Analysis
Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care
Tags: 2018, Adult, Age Factors, April 2020 List, Chang Y C, Clinical Competence, confidence and comfort, Cross-sectional Studies, Educational Status, Female, Humans, Journal of Palliative Medicine, Lee H Y, Liang H F, Liu H F, Male, Marital Status, Neonatal Palliative Care, neonatal professional, Neonatology, Palliative Care, Peng N H, Self Concept, Social Support, Surveys And Questionnaires, Taiwan, Wang T M
Face and Content Validity, Acceptability, Feasibility, and Implementability of a Novel Outcome Measure for Children with Life-Limiting or Life-Threatening Illness in Three Sub-Saharan African Countries
Tags: 2022, 2022 Special Edition Low Resource Setting Issue, Abas M, Adolescent, Ali Z, Atieno M, Bristowe K, Child, Downing J, Feasibility Studies, Harding R, Higginson IJ, Hospice And Palliative Care Nursing, Humans, Luyirika EB, Meiring M, Murtagh FE, Mwangi-Powell FN, Namisango E, Outcome Assessment Health Care, Palliative Care, Palliative Care/px [psychology], Palliative Medicine, Powell RA, Surveys And Questionnaires, uganda
Factors During a Child's Illness Are Associated With Levels of Prolonged Grief Symptoms in Bereaved Mothers and Fathers
Tags: 2020, Adolescent, Adult, Attitude To Death, Child, Fathers/psychology, Female, Grief, Humans, Journal Of Clinical Oncology, Kreicbergs U, Male, Middle Aged, Mothers/psychology, Neoplasms/*psychology, Oncology 2020 List, Parent-child Relations, Parents/*psychology, Pohlkamp L, Sex Factors, Surveys And Questionnaires, Sveen J
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
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
Forgoing life support: how the decision is made in European pediatric intensive care units
Tags: 2011, Child Preschool, December 2017 List, Decision Making, Devictor DJ, Europe, Female, France, Health Care Surveys, Humans, Intensive Care Medicine, Intensive Care Units Pediatric, Latour JM, Life Support Care, Male, Prospective Studies, Surveys And Questionnaires, Terminal Care/td [trends], Withholding Treatment/sn [statistics & Numerical Data]
Gastrointestinal and nutritional problems occur frequently throughout life in girls and women with Rett syndrome
Tags: 2012, Adolescent, Adult, Age Factors, Annese F, Barrish J O, Bone Diseases/complications/epidemiology, Caeg E, characteristics, Child, Child Preschool, Child Nutrition Disorders/epidemiology/etiology/genetics, Constipation, dysmotility, Dysphagia, feeding difficulties, Female, Gastrointestinal Diseases/epidemiology/etiology/genetics, gastrointestinal dysmotility, Geerts S, Glaze D G, Growth Disorders/epidemiology/etiology/genetics, Health Surveys, Humans, Infant, Infant Nutrition Disorders/epidemiology/etiology/genetics, Journal Of Pediatric Gastroenterology And Nutrition, Lane J B, Lee H S, Male, McNair L, Methyl-CpG-Binding Protein 2/genetics, Motil K J, Mutation, Neul J L, Nutrition Disorders/epidemiology/etiology/genetics, Parents, Percy A K, Prevalence, Rett syndrome, Rett Syndrome/complications/genetics, Skinner S A, Surveys And Questionnaires, Trajectory, Young Adult
Health and sleep problems in Cornelia de Lange Syndrome: a case control study
Tags: 2008, Adolescent, Arron K, behavioral problems, Case-Control Studies, characteristics, Comorbidity, De Lange syndrome, De Lange Syndrome/epidemiology/psychology, Ear Diseases/epidemiology/psychology, Eye Diseases/epidemiology/psychology, Female, Gastrointestinal Diseases/epidemiology/psychology, Hall S, Health Status, Hernia/epidemiology/psychology, Humans, Intellectual Disability/epidemiology/psychology, Journal Of Intellectual Disability Research, Male, Oliver C, Prevalence, Self-Injurious Behavior/epidemiology/psychology, self-injury, Severity Of Illness Index, Skin Diseases/epidemiology/psychology, sleep disturbance, Sleep Wake Disorders/epidemiology, Sloneem J, Stomatognathic Diseases/epidemiology/psychology, Surveys And Questionnaires, Trajectory
Impact of child death on paediatric trainees
Tags: 2018, Acute/ epidemiology, Adult, Archives of Disease in Childhood, Attitude To Death, Child, Death, February 2018 List, Female, Finn GM, Griksaitis MJ, Hollingsworth CE, Huckridge J, Humans, Intensive Care, Internship And Residency, Male, Middle Aged, Occupational Health, Only Child, Palliative Care, Pediatrics, Physicians/ psychology, Post-traumatic, Post-Traumatic/ epidemiology, Prevalence, Psychology, Stress Disorders, Surveys And Questionnaires, Traumatic, United Kingdom, Wesley C
Impact of research participation on parents of seriously ill children.
Tags: 2014, Adolescent, Adult, Andrews GS, Biomedical Research, Cadell S, Charting the territory, Child, Child Health Services, Child Preschool, Feichtinger L, Female, Humans, Infant, Infant Newborn, Journal of Palliative Medicine, Male, Middle Aged, Palliative Care, Parents/psychology, Severity Of Illness Index, Siden H, Smit QT, Steele R, Surveys And Questionnaires, Young Adult
Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis
Tags: 2017, Adult, Australia, Bereavement, Child, Coombs M, Critical Care Nursing, Death, Dying, End-of-life Care, Family, Female, Humans, Intensive Care, Intensive Care Units, Internet, James S, January 2018 List, Journal of Clinical Nursing, Male, Mitchell M, New Zealand, nursing role, Patient-centered Care, Practice Patterns Nurses', Surveys And Questionnaires, Wetzig K
Key constituents for integration of care for children assisted with long-term home ventilation: a European study
Tags: 2020, Access to care, Berry J, Bmc Pediatrics, Brenner M, Care coordination, Caregivers, Child, Child Health, Child Health Services, Complex care needs, Europe, Family partnership, Governance, home care services, Humans, Larkin P, Long-term home ventilation, May 2021 List, O'Shea MP, Palliative Care, Quality Of Care, Respiration Artificial, Respite Care, Surveys And Questionnaires
Limitation of Futile Therapy in the Opinion of Nursing Staff Employed in Polish Hospitals-Results of a Cross-Sectional Study
Tags: 2022, Adult, Attitude Of Health Personnel, Cesarean Section, Child, Cross-sectional Studies, Damps M, Gajda M, Human, International Journal of Environmental Research and Public Health, Kowalska M, Kucewicz-Czech E, March List 2023, Medical Futility, Nursing Staff, Poland, Quality Of Life, Surveys And Questionnaires
Listening To Parents: The Role Of Symptom Perception In Pediatric Palliative Home Care
This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and…
Tags: 2016, Adult, Borasio GD, Brandstatter M, Cross-sectional Studies, Death, Duroux A, Dyspnea/diagnosis, Dyspnea/psychology, End-of-life Symptoms, Female, Führer M, Grasser M, Home Care Services/standards, Humans, Male, November 2016 List, Pain/diagnosis, Pain/psychology, Palliative & Supportive Care, Palliative Care/methods, Palliative Care/psychology, Parents/psychology, Pediatric Palliative Home Care, Pediatrics/methods, Perception, Quality Of Life/psychology, Retrospective Studies, Surveys And Questionnaires, Symptom Assessment/psychology, Symptom Perception, Vollenbroich R
Longitudinal Understanding of Prognosis among Adolescents with Cancer
Tags: 2021, 2021 Special Edition - Oncology, Adolescent, Child, Communication, Compas BE, Desjardins L, Female, Fisher RS, Follow-up Studies, Fults MZ, Gerhardt CA, Humans, Kenney AE, Longitudinal Studies, Male, Manring S, Neoplasms/pathology/psychology/therapy, Oncologists/psychology, Oncology, Palliative Care, Parents/psychology, Pediatric Blood & Cancer, Prognosis, Psycho-Oncology, psychosocial, Ranalli MA, Rausch JR, Rodriguez EM, Surveys And Questionnaires, Vannatta K, Young-Saleme T