Browse Items (76 total)
- Tags: Perception
Living with Pompe disease: results from a qualitative interview study with children and adolescents and their caregivers
Tags: 2024, Adolescent, Adult, Article, Caregiver, Child, Clinical Article, cognitive behavioral therapy, Content Analysis, content validity, Disease Severity, Dyspnea, Emotion, emotional appraisal, enzyme replacement, Fatigue, February List 2025, Female, glycogen storage disease type 2, Hahn A, Hennermann JB, Home Care, Huemer M, Human, inborn error of metabolism, Lagler FB, Landolt MA, Life Expectancy, Male, MAXQDA software, Moslinger D, Multicenter Study, Muscle Weakness, musculoskeletal pain, Orphanet Journal Of Rare Diseases, Pain, Pain Intensity, Palliative Therapy, Perception, Pfrimmer C, psychosocial care, Qualitative Analysis, Qualitative Research, Quality Of Life, Questionnaire, Rohrbach M, School Child, Semi Structured Interview, Severity Of Illness Index, social exclusion, Social Support, sore throat, Truninger MI, Vomiting, Werner H, Young Adult
Listen to our voice!' using co-creation and art-based methods to explore the welfare and wellbeing of siblings of children with life-limiting conditions
Tags: 2024, Adolescent, Adult, Art, Article, Awareness, care behavior, Child, Clinical Article, Coping, Coping Strategy Questionnaire, de Vries K, Diagnosis, Dunbar H, Emotional and Behavioural Difficulties, England, Female, friend, Hart T, Human, Male, November List 2024, patient worry, Perception, Personal Experience, Physiological stress, School, Sibling, Teacher, United Kingdom, Voice, Wellbeing
The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study
Tags: 2024, Adult, Advance Care Planning, Aris-Meijer JL, Article, Caregiver Support, Child, Children, Clinical Article, Clinical Decision Making, Cross-sectional Study, Family Centered Care, Female, Follow Up, Health Care Personnel, health care planning, Hofman SC, Hospitalization, Human, illness trajectory, Interpersonal Communication, Joren CY, Kars MC, Kremer LCM, Likert scale, Male, mobile application, Mortality, November List 2024, Palliative Therapy, Perception, person centered care, Questionnaire, Rippen-Wagner H, Schuiling-Otten MA, Semi Structured Interview, shared decision making, Slingerland-Blom R, Terminal Care, Thematic Analysis, van der Velden C, Verhagen AAE
The impact, perceptions and needs of parents of children with epidermolysis bullosa
Tags: 2024, Aldous C, Article, Awareness, Blackbeard D, Chateau AV, Child, Communication Skill, Dlova N, epidermolysis bullosa, epistemology, ethnography, Experience, Health Care Access, Health Care Cost, Health Care Disparity, Health Care System, health Insurance, Human, Internet, Interview, Medical Practice, Palliative Therapy, Perception, Personal Experience, pregnant woman, Qualitative Research, Quality Of Life, responsibility, Semi Structured Interview, September List 2024, Shaw CM, social aspect, South African Family Practice, Systematic Review, Yoga
Comprehensive care programmes for children with medical complexity
Tags: 2024, Adolescent, adverse outcome, August List 2024, Bias, Caregiver, Child, Child Health Care, Child Preschool, Children With Medical Complexity, Chronic Disease, Cochrane Database of Systematic Reviews, Cohen E, community care, Comprehensive Health Care, Connell TG, Controlled Before-After Studies, controlled clinical trial (topic), Cox GR, D’Aprano AL, Decision Making, Emergency Health Service, Emergency Ward, Epidemiology, Functional Status, Gibb SM, Harvey AR, Health Care, Health Care Cost, Health Care Delivery, health care need, health care organization, Health Care Personnel, Health Care Quality, Health Care Utilization, health Insurance, Hospital Admission, hospital readmission, Human, Humans, Infant, Interrupted Time Series Analysis, life satisfaction, Medical Care, Meehan E, Merrick N, meta analysis, Mountford NJ, Multidisciplinary team, Multiple Chronic Conditions, Non-Randomized Controlled Trials as Topic, outcome assessment, Patient Safety, Perception, Preschool Child, Primary Health Care, Program Evaluation, pulmonary aspiration, Quality Of Health Care, Quality Of Life, Randomized Controlled Trial (topic), Randomized Controlled Trials as Topic, remuneration, Review, social determinants of health, Social Worker, statistical bias, Survival Rate, Telemedicine, Therapy, Transition To Adult Care, Williams K
Parental Perceptions of the Impact of a Child’s Complex Chronic Condition: A Validation Study of the Impact on Family Scale
Tags: 2024, Adolescent, Adult, Alves SP, Article, August List 2024, Braz AC, Cerebral Palsy, Child, Child Health, Childhood Disease, Chronic Disease, cohesion, confirmatory factor analysis, construct validity, Disease, Educational Status, Emotional Stress, Family Life, family relation, Family Relations, Female, Fontaine AM, Graça L, Human, Humans, impact on family, Impact on Family Scale, International Journal of Environmental Research and Public Health, life satisfaction, Likert scale, Male, Middle Aged, Parent, parental care, Parents, pediatric complex chronic illness, Perception, Personal Satisfaction, Portugal, Psychology, psychometry, Questionnaire, Reproducibility, Reproducibility of Results, Satisfaction, satisfaction with life, scoring system, social cohesion, sociodemographics, Surveys And Questionnaires, test retest reliability, validation study
Survival, short-term morbidity of extremely low gestational age infants and their predictors
Tags: 2019, April List 2024, Birth Weight, brain hemorrhage, Clinical Article, Cohort Analysis, conference abstract, Controlled Study, Corticosteroid, encephalomalacia, Feberova J, Female, Gender, Gestational Age, Human, Infant, Kis H, Lemyre B, Length Of Stay, lung dysplasia, Male, Morbidity, mortality risk, Necrotizing Enterocolitis, Neonatal Intensive Care Unit, Paediatrics And Child Health, Palliative Therapy, Perception, Pregnancy, Prevalence, Probability, Radonjic A, Regression Analysis, retrolental fibroplasia, Retrospective Study, Sepsis, Stillbirth, survival prediction, univariate analysis
Evaluating quality of life in pediatric palliative care: a cross-sectional analysis of children's and parents' perspectives
Tags: 2023, Adolescent, Article, Bolance C, Camprodon-Rosanas E, Child, Clinical Article, Cross-sectional Study, Disease Management, Drug Therapy, European Journal of Pediatrics, February List 2024, Female, Guillen M, Human, Limonero JT, Male, nonparametric test, Palliative Therapy, Parent, Perception, psychologic assessment, Quality Of Life, sociodemographics, special situation for pharmacovigilance, Toro-Perez D, Vilarrubi SN, Voice
Engaging Fathers in Pediatric Palliative Care Research
Tags: *Father-Child Relations, *Fathers/px [Psychology], *Palliative Care/px [Psychology], *Paternal Behavior/px [Psychology], 2020, 2023 SE4 - Parent Perspectives, Adaptation, Psychological, Adult, Barrera, M., Beaune, L., Belletrutti, M., Blumberg, J., Caregiver, Child, Child Health, Controlled Study, Father, Health Care Personnel, Humans, Ing, S., Interview, Journal of social work in end-of-life and palliative care, Male, Nicholas, D., Palliative Therapy, Paternal caregivers, Pediatrics, Perception, Professional-family Relations, Qualitative Research, Rapoport, A., research engagement, sample recruitment challenges, Wellbeing
"They just get it" an exploration of father's experiences and perceptions of a support group for men caring for children with disabilities and/or developmental delay
A qualitative exploration of parental perspectives on quality of care for children with serious illnesses
Tags: 2023, Amin Z, Ang FJL, Article, Benchmarking, Buang SNH, Caregiver, Child, Chong PH, Chow CCT, Conceptual Framework, Finkelstein EA, Frontiers in Pediatrics, Grounded Theory, health care organization, Health Care Quality, Holistic Care, Human, Human Tissue, October List 2052, Only Child, Palliative Therapy, Pediatrics, Perception, Qualitative Research, Semi Structured Interview, Singapore, Tan TSZ, theoretical study, Total Quality Management, worker
Facilitators and barriers perceptions to early referral to pediatric palliative care perceived
Tags: 2023, Adult, Andes Pediatrica, Article, Ceballos-Yanez D, Child, Clinical Practice, Controlled Study, Demography, Eugenin-Soto MI, Female, Human, Major Clinical Study, Male, Multicenter Study, Palliative Care, Palliative Therapy, Patient Referral, Patricio AP, Pediatrician, Perception, Professional Practice, Referral And Consultation, Religion, September List 2030
Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers
Tags: 2023, Agrawal AK, Article, August List 2038, Bogetz JF, Child, Communication Barrier, Controlled Study, Education, Female, Fogel AH, Human, Journal of Palliative Medicine, Lelkes E, Levine A, Life Sustaining Treatment, Major Clinical Study, Male, McPoland P, Multicenter Study, Palliative Care, Palliative Therapy, Pediatric Hospital, Perception, personnel shortage, Physician, Prognosis, Resident, Thematic Analysis, United States, Winn PA
"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
Tags: 2023, Adult, Albanese E, Altruism, Article, August List 2035, Bereavement, Boles JC, Caregiver, Child, epistemology, genetic transcription, Grief, Human, Jones MT, Language, Palliative Medicine, Palliative Therapy, Perception, Phenomenology, Qualitative Research, Quality Of Life, ritual, Semi Structured Interview, Sibling, United States, Young Adult
Siblings and End-Of-Life Decision Making in the NICU
Tags: 2023, care behavior, Child, Clinical Article, conference abstract, Content Analysis, Critically Ill Patient, Decision Making, electronic medical record, Female, Gillam L, Human, Infant, Journal of Paediatrics and Child Health, July List 2023, Male, Neonatal Intensive Care Unit, Perception, Power J, Prentice TM, Semi Structured Interview, Sibling, Wellbeing
Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement
Tags: 2023, anxiety, Bereavement, BMC Palliative Care, Cambonie G, Combes C, de Balanda KB, Depression, Desage C, Female, Gavotto A, Humans, Infant, Infant Newborn, July List 2023, Lemaitre A, Parents/px [psychology], Perception, Perinatal Death, Prospective Studies, Terminal Care, Terminal Care/px [psychology], Thaller P
Assessing well-being in pediatric palliative care: A pilot study about views of children, parents and health professionals
Tags: 2023, Article, Bolance C, Camprodon-Rosanas E, Child, Clinical Article, Controlled Study, Cross-sectional Study, Demography, Emotion, emotional well-being, Female, Guillen M, health practitioner, Human, Limonero JT, Male, May List 2023, Navarro Vilarrubi S, Palliative And Supportive Care, Palliative Care, Palliative Therapy, Perception, Pilot Projects, Pilot Study, psychologic assessment, School Child, Toro-Perez D, vision, Visual Analog Scale, Wellbeing
Knowledge of Pediatric Palliative Care among Medical Students in Jordan: A Cross-Sectional Study
Neonatal Nurses' Perceptions and Needs of End-of-Life Care Practice: A Jordanian Qualitative Study
Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review
Tags: 2022, Analysis, and, Article, Beltran SJ, CARE, Experience, Family, Female, for, guideline, Hamel M N, Human, Infant, intensive, Items, Male, meta, Meta-analyses, Neonatal, Newborn, October 2022 List, Palliative, Parent, Perception, Practice, Preferred, Psychological, Quality, Reporting, Review, Reviews, Satisfaction, systematic, The American Journal of Hospice & Palliative Care, Therapy, Unit, Units
Provider Perceptions for Withdrawing Life Sustaining Therapies at a Large Pediatric Hospital
Tags: 2022, Analysis, Article, CARE, Carpenter AT, Casas JA, Child, Clinical, Coleman RD, coronary, Crawford CA, data, Drug, erratum, experiment, Female, guideline, Health, Hospital, Human, intensive, Journal of Pain and Symptom Management., Life, Major, Male, Neonatal, Palliative, Pediatric, Perception, Practice, Qualitative, Quality, quantitative, Sawyer K E, September 2022 List, Software, study, sustaining, Therapy, Treatment, Tume SC, Unit, Withdrawal
Study to Assess the Effectiveness of Simulation Technique to Overcome Misperceptions of Undergraduate Nursing Students' About Paediatric Palliative Care
"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
Tags: 2022, Article, August 2022 List, Broden EG, Cancer Patient, Child, Chronic Disease, Comfort, Controlled Study, Curley MAQ, Distress Syndrome, Hinds PS, Human, Infant, Intensive Care, Interview, Journal of Hospice and Palliative Nursing, Major Clinical Study, Male, Malignant Neoplasm, Memory, Narrative, Nursing, Pain, Pediatric Intensive Care Unit, Perception, quantitative analysis, Sedation, Terminal Care, Werner-Lin AV
Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death From Cancer: Room for Improvement
Bereaved Parents' Perceptions of Infant Suffering in the NICU
Engaging Fathers in Pediatric Palliative Care Research
Tags: 2020, 2022 Special Edition 1 - Parent Perspectives, Barrera M, Beaune L, Belletrutti M, Blumberg J, Caregiver, Child, Child Health, Controlled Study, Father, Health Care Personnel, Ing S, Interview, Journal of social work in end of life & palliative care., Male, Nicholas D, Palliative Therapy, Pediatrics, Perception, Qualitative Research, Rapoport A, Wellbeing
"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
Emergencies in Pediatric Palliative Care: A Survey of Ambulance Officers to Understand the Interface between Families and Ambulance Services
Tags: 2020, Agar M, ambulance, Article, Attitude, Child, Comfort, Controlled Study, Counseling, E-mail, Emergency Health Service, Herbert A, Human, Journal of Palliative Medicine, Malcolm K, May 2020 List, medical documentation, Mott C, Palliative Therapy, pediatric patient, Perception, Queensland, Resuscitation, Sansone H, writing
Family attitudes toward genomic sequencing in children with cardiac disease
Tags: 2020, April 2020 List, Char D, Child, conference abstract, Confidentiality, consumer, Controlled Study, Deuitch N, Family Attitudes, family planning, Gal D, genetic discrimination, Grounded Theory, Health Care System, heart center, Heart Diseases -- Mortality, Human, Human Tissue, Insurance, interrater reliability, Journal Of Investigative Medicine, Magnus D, Perception, Privacy, Prognosis, Resource Allocation, Semi Structured Interview, sequence analysis, Surgery, Tang R, Transplantation, Trust, Uncertainty
Palliative care in an underserved community: Striving and thriving
Tags: 2018, Alladin A R, April 2020 List, Awareness, Bereavement Support, bone marrow, Cancer Patient, Cantwell G P, Caribbean, Child, Childhood Cancer, conference abstract, Congenital Malformation, coordination compound, Ethnic Group, Europe, Female, Heart, Hispanic, Hospice, Hospital Patient, Human, Japan, Juanico K, kidney, liver, Major Clinical Study, Male, Medicaid, Memory, Middle East, Music Therapy, Nares M, Neonatal Intensive Care Unit, Newborn, nursing education, Pain, Palliative Therapy, Pastoral Care, Pediatrics, Perception, Posthumous Care, Resident, Sibling, Social Work, Terminal Care, terminally Ill Patient, Webster-Carrion A
Getting a Seat at the Table: An Iterative Development Process to Improve Available Benchmark Data for Pediatric Palliative Care Programs (S778)
Tags: 2020, administrative personnel, Child, conference abstract, Controlled Study, District of Columbia, Friebert S, Hospital Patient, Human, Humphrey L, Journal of Pain and Symptom Management, Klick J, March 2020 List, Palliative Therapy, Perception, phase 1 clinical trial, Program Development, Rogers M, Williams C, workflow
Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)
Tags: 2020, Bereavement Support, Bustamante G, Child, conference abstract, Controlled Study, Convenience Sample, Demography, Female, financial management, Gender, Grunauer M, Health Care Personnel, high income country, Human, Journal of Pain and Symptom Management, Male, March 2020 List, Neonatal Intensive Care Unit, Newborn, Newborn Death, Palliative Therapy, patient coding, Pediatric Intensive Care Unit, Perception, Prospective Study, Questionnaire, Statistical Significance, World Bank, Zambrano K
Legacy Artwork in Pediatric Oncology: The Impact on Bereaved Caregivers' Psychological Functioning and Grief
Tags: 2019, Adolescent, Adult, Article, Barnett M, Bereavement, Brief Symptom Inventory, Caregiver, Child, Childhood Cancer, Clinical Article, Complicated Grief, Controlled Study, Female, Grief, Health Care Personnel, Human, Infant, Journal of Palliative Medicine, Madan-Swain A, Male, mental function, Oncology 2019 List, Perception, prolonged grief, Questionnaire, Reynolds N C, Schaefer M R, Spencer S K, support group, time of death
Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes
Tags: 2020, Analgesia, Article, Boyle P J, Child, Clinical Article, Comfort, Controlled Study, Expectation, Female, Human, Lee B K, Male, Marcus K J, Oncology 2019 List, Palliative Therapy, Pediatric Blood and Cancer, pediatric patient, Perception, Prospective Study, Quality Of Life, Questionnaire, radiation oncology, Radiotherapy, Side Effect, Wolfe J, Zaslowe-Dude C
Perceptions on good death among parents of pediatric patients with hematology-oncology disease in advance
Tags: 2019, Cancer Patient, Child, conference abstract, Controlled Study, Female, Health Status, Hematology, Human, interdisciplinary education, Journal Of Clinical Oncology, Kim J Y, Leukemia, living will, Lymphoma, middle school, Oncology 2019 List, outpatient department, Park B K, pediatric patient, Perception, Quality Of Life, Questionnaire, Stress, Terminal Care
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
Perceptions of Pediatric Palliative Care among Physicians Who Care for Pediatric Patients in South Korea
Tags: 2019, Article, care behavior, Caregiver, Child, Controlled Study, December 2019 List, Decision Making, Education, Human, Journal of Palliative Medicine, Kim CH, Kim MS, Moon YJ, Multicenter Study, Oncologist, Palliative Therapy, pediatric patient, Perception, Prognosis, Quality Of Life, Questionnaire, Shin HY, Song IG, South Korea, Terminal Care, tertiary care center, workforce, Yu J
Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study
Tags: 2019, Adolescent, Adult, Article, Blume ED, Child, Clinical Article, December 2019 List, Female, Human, Hypoplastic Left Heart Syndrome, Journal Of Palliative Care, Male, May R, Medical Care, Morell E, Palliative Therapy, Pediatric Cardiology, Perception, Prenatal Diagnosis, Rajagopal S, Thompson J, thoracic surgeon
The experiences of bereaved family caregivers with advance care planning for children with medical complexity
Tags: 2019, Advance Care Planning, Amin R, Caregiver, Child, Clinical Article, Cohen E, conference abstract, Consultation, Content Analysis, Conversation, Death, Female, genetic transcription, Health Care Personnel, Hellman J, Human, Human Tissue, Informed Consent, Lord S, Male, Moore C, Netten K, October 2019 List, Orkin J, Paediatrics and Child Health (Canada), Perception, Personal Experience, Rappaport A, Semi Structured Interview