Browse Items (74 total)
- Tags: Surveys And Questionnaires
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
When Parents Face The Death Of Their Child: A Nationwide Cross-sectional Survey Of Parental Perspectives On Their Child’s End- Of Life Care.
Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the…
Tags:
2016, Attitude Of Health Personnel, Attitude To Death, Bergstraesser E, BMC Palliative Care, Chantal Grandjean, Cross-sectional Studies, Death, Decision Making, End Of Life, Engberg S, Eva Cignacco
K, Female, Humans, Infant Newborn, Male, Marfurt-Russenberger, May 2016 List, Nicolas Von der Weid, Parental Perspectives, Parents/psychology, Patricia Fahrni-Nater, Pediatrics, Pediatrics/standards, Perception, Questionnaire Survey, Ramelet AS, Resuscitation Orders/psychology, Surveys And Questionnaires, Switzerland, Terminal Care, Terminal Care/standards, Von der Weid N, Zimmermann K
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
The Relationship Between The Nursing Environment And Delivering Culturally Sensitive Perinatal Hospice Care
Tags: 2015, Delivery of Health Care, End-of-life Care, Female, Fetal Death, Fornehed Mary Lou, Hospice And Palliative Care Nursing, Hospice Organisation, Hospices/statistics & Numerical Data, Humans, Infant, International Journal of Palliative Nursing, Lindley L, May 2017 List, Mixer Sandra J, Nursing Administration, Nursing Leadership, Nursing Staff, Perinatal Care, Perinatal Death, Pregnancy, Retrospective Studies, Surveys And Questionnaires, Transcultural Nursing, United States, Wallace Heather, Wool Charlotte, Workplace
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
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
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
The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions
Tags: 2021, Child, Child Preschool, Cross Infection/prevention & control, Cross-sectional Studies, Drug Resistance Multiple, Female, Hartenstein-Pinter A, Hasan C, Hospital Units, Humans, hygiene, Infant, Infection Control/organization & administration, Inservice Training, International Journal of Palliative Nursing, Interviews As Topic, Male, May 2021 List, Nursing Assessment, Paediatrics, Palliative Care, Parents, Patient Isolation, Patient Safety, Quality Of Life, Schmidt P, Social Participation, Stening K, Stereotyping, Surveys And Questionnaires, Terminally Ill, Wager J, Zernikow B
Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
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
Sleep in individuals with Cri du Chat syndrome: a comparative study
Tags: 2009, Adolescent, Adult, Braam W, characteristics, Child, Child Preschool, Cri-du-chat, Cri-du-Chat Syndrome/ep [Epidemiology], Cri-du-Chat Syndrome/ge [Genetics], Curfs L M, Didden R, Female, Genetic Testing, Humans, Infant, Infant Newborn, Journal Of Intellectual Disability Research, Korzilius H, Maas A P, Male, Middle Aged, Prevalence, Severity Of Illness Index, sleep disturbance/disorders, Sleep Wake Disorders/di [Diagnosis], Sleep Wake Disorders/ep [Epidemiology], Smits M G, Statistics Nonparametric, Surveys And Questionnaires, Trajectory, Young Adult
Sleep disturbances in aspartylglucosaminuria (AGU): a questionnaire study.
Tags: 2006, Acetylglucosamine, Acetylglucosamine/analogs & derivatives/urine, Adolescent, Adult, Aspartylglucosaminuria, characteristics, Child, Child Preschool, Children W/SNI, Female, Heiskala H, Humans, Journal Of Inherited Metabolic Disease, Kaski M, Kivinen S, Laakso M L, Lindblom N, Longitudinal Studies, Male, Metabolism Inborn Errors, Metabolism Inborn Errors/complications/pathology, Middle Aged, Prevalence, Questionnaires, Sleep Disorders/complications/diagnosis, sleep disturbance/disorders, Sleep Wake Disorders, Surveys And Questionnaires, Trajectory
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
Sleep disordered breathing in a cohort of children with achondroplasia: correlation between clinical and instrumental findings
Tags: 2017, achondroplasia, Achondroplasia/co [Complications], Achondroplasia/ge [Genetics], Age Factors, Antoniazzi F, Cantalupo G, characteristics, Child, Child Preschool, Cohort Studies, EC 2-7-10-1 (FGFR3 protein human), EC 2-7-10-1 (Receptor Fibroblast Growth Factor Type 3), feeding difficulties, Female, Gasperi E, Humans, Incidence, Infant, Lo Tartaro P, Male, Minerva Pediatrica, Piacentini G, Polysomnography/mt [Methods], Receptor Fibroblast Growth Factor Type 3/ge [Genetics], respiratory sleep disorder, Sleep Apnea Syndromes/di [Diagnosis], Sleep Apnea Syndromes/ep [Epidemiology], Sleep Apnea Syndromes/et [Etiology], Surveys And Questionnaires, Trajectory, Zaffanello M
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
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
Research participation experiences of parents of children with cancer who were asked about their child's prognosis
Research barriers in children and young people with life-limiting conditions: a survey
Tags: Child, Humans, 2022, Adolescent, Beecham E, Bluebond-Langner M, BMJ Support Palliat Care, clinical decisions, Ethics, Hudson BF, January List 2023, Jones L, Lakhanpaul M, methodological research, Oostendorp LJM, Paediatrics, Palliative Care/methods, Peake JN, Research Design, Stone P, Surveys And Questionnaires, Symptom Management, Symptoms
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
Psychosocial adjustment in siblings of young people with Duchenne muscular dystrophy
Tags: 2010, Adaptation Psychological, Adolescent, Child, December 2017 List, European Journal of Paediatric Neurology, Female, Garralda ME, Humans, Kinali M, Male, Mental Health, Muntoni F, Muscular Dystrophy Duchenne/px [psychology], Psychiatric Status Rating Scales, Psychology, Read J, Siblings/px [psychology], Surveys And Questionnaires
Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study
Tags: 2016, Aged, Bro F, Caregivers/px [psychology], Cohort Studies, December 2017 List, Female, Guldin MB, Health Status, Humans, Jensen AB, Male, Neergaard MA, Neoplasms/px [psychology], Nielsen MK, Socioeconomic Factors, Stress Psychological/px [psychology], Supportive Care In Cancer, Surveys And Questionnaires, Terminally Ill
Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy…
Tags: 2016, Bereavement, Côté-Arsenault D, Critical Care/organization & Administration, Cross-sectional Studies, Denney-Koelsch E, Female, Fetal Mortality, Humans, Infant Newborn, Journal of Palliative Medicine, Kavanaugh K, Kim S, March 2016 List, Palliative Care/organization & Administration, Parents/psychology, Perinatal Care/organization & Administration, Perry Black B, Pregnancy, Professional-family Relations, Surveys And Questionnaires, United States, Wool C
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
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
Parents' experiences of pediatric palliative care and the impact on long-term parental grief.
Tags: 2014, Adult, Backlog, Cancer, Children, Communication, Continuity Of Patient Care, Cross-sectional Studies, Darlington Anne-Sophie E, Female, Grief, Humans, Journal Article, Journal of Pain and Symptom Management, Male, Michiels EMC, Middle Aged, Multivariate Analysis, Neoplasms/therapy, Palliative Care, Palliative Care/psychology, Parental Grief, Parents/psychology, Pediatrics, Pieters R, Retrospective Studies, Streng IC, Surveys And Questionnaires, Symptom Management, van den Heuvel-Eibrink MM, van der Geest IMM
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
Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy
Tags: 2014, Adult, Agosto C, Benini F, Child, European Journal of Pediatrics, Female, Ferrante A, Humans, Internship And Residency, Italy, January 2018 List, Male, Middle Aged, Needs Assessment, Pain/dt [drug Therapy], Palliative Care, Palliative Care/st [standards], Palliative Care/td [trends], Pediatrics/ed [education], Po C, Rusalen F, Salata M, Surveys And Questionnaires, Terminal Care, Terminal Care/st [standards], Terminal Care/td [trends]
Pain in Nonverbal Children with Medical Complexity: A Two-Year Retrospective Study
Tags: 2018, Adolescent, Child, Child Behavior, Female, Humans, Intellectual Disability, July 2019 List, Longitudinal Studies, Male, Mauskar S, Morrill D, New England, Nursing Assessment, Pain Measurement/mt [Methods], Pain/di [diagnosis], Pain/pp [Physiopathology], Parents/px [psychology], Quinn B L, Retrospective Studies, Solodiuk J C, Surveys And Questionnaires, The American journal of nursing
Paediatric Palliative Care: A Survey Of Paediatricians And Family Practitioners
Tags: 2013, Adaptation Psychological, Adult, Aged, BMJ Supportive & Palliative Care, British Columbia, Curriculum, Data Collection, Education Medical Continuing, Female, Humans, Male, Middle Aged, Miller T, Paediatric Palliative Care: A Survey Of Paediatricians And Family Practitioners, Palliative Care/ Psychology, Pediatrics/ Education, Physicians Family/ Education/ Psychology, Self Care/psychology, Straatman L, Surveys And Questionnaires
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
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
Neonatal Palliative Care: Assessing the Nurses Educational Needs for Terminally Ill Patients
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
Modes and patterns of self-mutilation in persons with Lesch-Nyhan disease
Tags: 2003, Adolescent, Adult, Anticonvulsants/therapeutic use, Barabas G, behavioral problems, Carbamazepine/therapeutic use, characteristics, Child, Child Preschool, Chromosomes Human X/genetics, Developmental Medicine and Child Neurology, Diazepam/therapeutic use, Eddey G E, Female, Giacomini K D, Humans, Infant, Lesch-Nyhan syndrome, Lesch-Nyhan Syndrome/genetics, Male, Reck J F, Robey K L, Self-Injurious Behavior/diagnosis/drug therapy, self-injury, Surveys And Questionnaires, Trajectory
Maintaining family life balance while facing a child's imminent death-A mixed methods study
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
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
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
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
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