Browse Items (74 total)
- Tags: 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
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
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
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
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
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
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
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
Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting
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
[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]
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
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
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]
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
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
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
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
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
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
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
Research participation experiences of parents of children with cancer who were asked about their child's prognosis
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
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
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
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
Challenges in establishing optimal pediatric palliative care at the university hospital in Slovenia
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
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
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
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
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
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
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
Neonatal Palliative Care: Assessing the Nurses Educational Needs for Terminally Ill Patients
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
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
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
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
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