Browse Items (74 total)
- Tags: Surveys And Questionnaires
Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
Tags: 2020, Acta Paediatrica, Attitude Of Health Personnel, Attitude questionnaire, Attitudes of neonatologists and neonatal nurses, Baes S, Beernaert K, Belgium, Chambaere K, Cohen J, Cools F, Death, Decision Making, Deliens L, Dombrecht L, End-of-life Decisions, Goossens L, July 2021 List, Naulaers G, Neonatal Nurses, Neonatologists, Newborn Infant, Optimism, Perinatal Death, Piette V, Pregnancy, Roets E, Surveys And Questionnaires, Terminal Care, Termination of pregnancy
Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs
Tags: 2020, Canada, Child, Cross-sectional Studies, Dryden-Palmer K, Humans, Infant Newborn, Intensive Care Units Neonatal, Janvier A, Larson CP, March 2021 List, McNeil C, Moore G, Morals, Parshuram CS, Pediatric Critical Care Medicine, Roumeliotis N, Stress Psychological/diagnosis/epidemiology, Surveys And Questionnaires, Tomlinson G
Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
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
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
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
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
Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool
Tags: 2022, 2022 Special Edition 3 - Oncology List, Adolescent, Adult, Advanced Cancer, Avoine-Blondin J, BMC Palliative Care, Child, Concept Formation, Dumont É, Duval M, Female, Humans, Male, Marquis MA, Mixed-method, Neoplasms, Palliative Care, Pediatrics, psychology/therapy, Quality Of Life, Reproducibility of Results, Sultan S, Surveys And Questionnaires
Social and behavioral problems of children with agenesis of the corpus callosum
Tags: 2007, Agenesis of Corpus Callosum, agenesis of the corpus callosum, Aggression, alertness, Andrews G L, Attention, Autistic Disorder/epidemiology, Badaruddin D H, Behavior, behavioral, Bolte S, Brown W S, characteristics, Child, Child Preschool, Child Behavior Disorders/epidemiology, Child Psychiatry and Human Development, Female, Humans, Male, Paul L K, Schilmoeller G, Schilmoeller K J, sleep disturbance, Social Behavior, Surveys And Questionnaires, Trajectory
The needs of professionals in the palliative care of children and adolescents
Tags: 2013, Abbruzzese R, Adolescent, Adolescent Health Services/ma [Manpower], Bergstraesser E, Child, Child Care/ma [Manpower], European Journal of Pediatrics, Health Services Needs And Demand, Hornung R, Hosek M, Humans, Inglin S, January 2018 List, Marfurt-Russenberger K, Palliative Care/ma [manpower], Qualitative Research, Surveys And Questionnaires, Switzerland
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
Newborn genetic screening for spinal muscular atrophy in the UK: The views of the general population
Tags: 2018, Adolescent, Adult, Aged, Attitudes, bloodspot, Boardman FK, Ethics, Family, Female, Genetic Testing utilization, Health Knowledge, Humans, Infant, Internet, Male, Middle Aged, Molecular genetics & genomic medicine, Muscular Atrophy, Neonatal Screening methods, Neuromuscular Diseases genetics, Newborn, newborn genetic screening, November 2018 List, Practice, Risk Assessment methods, Sadler C, social implications, Spinal diagnosis genetics, Spinal Muscular Atrophy, Surveys And Questionnaires, United Kingdom epidemiology, Young PJ
Practical Recommendations For Diagnosis And Management Of Respiratory Muscle Weakness In Late-onset Pompe Disease
Tags: 2016, Adult, Barrot Cortés E, Boentert M, Confalonieri M, Cough Assistance, Glycogen Storage Disease Type Ii/diagnosis, Glycogen Storage Disease Type Ii/pathology, Glycogen Storage Disease Type Ii/therapy, Humans, Infant, International Journal of Molecular Sciences, Jones HN, Mechanical Ventilation, Mellies U, Muscle Weakness/pathology, Muscle Weakness/therapy, Neuromuscular Disorders, October 2016 List, Pompe Disease, Prigent H, Respiratory Function Tests, Respiratory Insufficiency/therapy, Respiratory Muscle Weakness, Respiratory Muscles/pathology, Simonds AK, Surveys And Questionnaires, Várdi K, Wenninger S
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
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
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
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
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
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
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
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
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
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]
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
Maintaining family life balance while facing a child's imminent death-A mixed methods study
Sleep disturbance in Mowat-Wilson syndrome
Tags: 0 (Homeodomain Proteins), 0 (Repressor Proteins), 0 (ZEB2 protein human), 2016, Adolescent, Adult, American Journal of Medical Genetics Part A, Australia, Behavior Rating Scale, characteristics, Child, Child Preschool, Einfeld S, Evans E, Facies, Female, Gene Expression, Hirschsprung Disease/co [Complications], Hirschsprung Disease/di [Diagnosis], Hirschsprung Disease/ge [Genetics], Hirschsprung Disease/pp [Physiopathology], Homeodomain Proteins/ge [Genetics], Humans, Intellectual Disability/co [Complications], Intellectual Disability/di [Diagnosis], Intellectual Disability/ge [Genetics], Intellectual Disability/pp [Physiopathology], Male, Microcephaly/co [Complications], Microcephaly/di [Diagnosis], Microcephaly/ge [Genetics], Microcephaly/pp [Physiopathology], Middle Aged, Mowat D, Mowat-Wilson syndrome, Mutation, Repressor Proteins/ge [Genetics], Severity Of Illness Index, sleep disturbance/disorders, Sleep Initiation and Maintenance Disorders/co [Complications], Sleep Initiation and Maintenance Disorders/di [Diagnosis], Sleep Initiation and Maintenance Disorders/ge [Genetics], Sleep Initiation and Maintenance Disorders/pp [Physiopathology], Surveys And Questionnaires, Trajectory, Wilson M
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
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
Why is corneal donation so rare in children's hospices? A survey of multidisciplinary team members attitudes, knowledge, practice, and experience
Tags: 2022, Attitude, Attitude Of Health Personnel, August 2022 List, Cecchi C, Child, Children's Hospice, Cornea, corneal donation, Giometto S, Giugni C, Health Knowledge, Attitudes, Practice, Hospices, Humans, Lucenteforte E, Patient Care Team, Pediatr Transplant, Ricci Z, Santucci C, Surveys And Questionnaires
A Scale for the Identification of the Complex Chronic Pediatric Patient (PedCom Scale): A Pilot Study
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
Sixty-four patients with Brachmann-de Lange syndrome: a survey
Tags: 1985, American Journal Of Medical Genetics, behavioral problems, Birth Weight, breathing difficulties, characteristics, Child, De Lange syndrome, De Lange Syndrome/etiology/genetics/physiopathology, feeding difficulties, Female, Hawley P P, Humans, Jackson L G, Kurnit D M, Male, Psychomotor Performance, respiratory tract symptoms, Surveys And Questionnaires, Trajectory
Pediatrician Ambiguity In Understanding Palliative Sedation At The End Of Life
Tags: 2017, Adult, Aged, American Journal of Hospice and Palliative Medicine, Child, Conscious Sedation/mt [methods], Female, FitzGerald M, Health Knowledge Attitudes Practice, Henderson C M, Hoehn K S, Humans, Male, Middle Aged, Palliative Care/mt [methods], Pediatrics/mt [methods], Pediatrics/sn [statistics & Numerical Data], Practice Patterns Physicians'/sn [statistics & Numerical Data], September 2017 List, Surveys And Questionnaires, Terminal Care/mt [methods], Weidner N
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
Sleep disorder and epilepsy in children with tuberous sclerosis: a questionnaire-based study
Tags: 1994, Adolescent, behavioral problems, characteristics, Child, Child Preschool, Developmental Disabilities/complications, Developmental Medicine and Child Neurology, Epilepsy/etiology, Female, Humans, Hunt A, Learning Disorders/complications, Male, Parents/psychology, sleep disturbance, Sleep Wake Disorders/etiology/psychology, Stores G, Stress Psychological/etiology, Surveys And Questionnaires, Trajectory, Tuberous Sclerosis, Tuberous Sclerosis/complications/psychology
The reactions to research participation questionnaires for children and for parents (RRPQ-C and RRPQ-P)
Tags: 2002, Acute, Adult, Attitude, Backlog, Child, Factor Analysis, Female, General Hospital Psychiatry, Humans, Journal Article, Kassam-Adams N, Male, Newman E, Parents, Patient Participation, Patient Selection, Pilot Projects, Research, Risk Assessment, statistical, Stress Disorders, Surveys And Questionnaires, Traumatic, Wounds and Injuries
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