Browse Items (80 total)
- Tags: Caregiver
Attitudes of the four groups of population toward end-of-life care of their child: A nationwide survey
Tags: 2018, Adult, Cancer Patient, Caregiver, Child, Choi YH, conference abstract, Controlled Study, Female, Health Care System, Hospice, Human, Kim YS, Lee B, Life Sustaining Treatment, Lifespan, Major Clinical Study, Male, Multicenter Study, November 2018 List, Palliative Therapy, Park JD, Pediatric Critical Care Medicine, pediatric patient, Physician, population group, Questionnaire, Terminal Care, Yun YH
Expectations and knowledge of cannabidiol therapy for childhood epilepsy — A German caregiver survey
Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
Tags: 2024, actigraph, actimetry, Adolescent, April List 2024, Article, BMC Palliative Care, Caregiver, Child, Chronic Disease, Claus B, Clinical Article, Controlled Study, Decision Making, diagnostic procedure, Drug Therapy, Female, Human, Human Experiment, Kubek LA, Male, Palliative Therapy, Prospective Study, protocol, Questionnaire, Questionnaires, School Child, Sleep, sleep efficiency, sleep time, special situation for pharmacovigilance, stage 1 sleep, Therapy, Wager J, wake after sleep onset, Wakefulness, Zernikow B
The meaning of dying and death for children, their carers, and families: a scoping review
The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention
Tags: 2019, Action Research, Adaptation, Adult, American Journal of Hospice & Palliative Medicine, August 2019 List, Beaupin L K, Breier J M, Byrwa D J, Caregiver, Caregiver Support, Caregivers -- Psychosocial Factors, Coefficient Alpha, Criterion-Related Validity, Data Analysis Software, Depner R M, Descriptive Statistics, Discriminant Validity, Female, Grant P C, Health Facilities, Human, Internal Consistency, Levy K, Life Purpose, Married Women, meaning-centered psychotherapy, Middle Age, Mothers, Multimethod Studies, Narratives, New York, Pailler M E, Paired T-Tests, Palliative Care -- Psychosocial Factors, Pediatric, Pediatric Care, pediatric caregiver, Pediatric Palliative Care, Personal Satisfaction, Photography, photovoice, Pilot Studies, Pretest-Posttest Design, Program Development, Program Evaluation, Program Implementation, Psychological, Psychotherapy -- Methods, Questionnaires, Reliability, Research Subject Recruitment, Semi-Structured Interview, social media, surveys, Tenzek K E, Whites
The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program
Tags: 2019, Article, Beaupin LK, care behavior, Caregiver, Child, Curriculum, December 2019 List, Depner RM, Female, Grant PC, Human, Human Experiment, Levy K, Male, meaning making, Narrative, Pailler ME, Palliative Therapy, Pediatrics, Photography, Qualitative Analysis, Qualitative Research, social media, Tenzek KE, The American Journal of Hospice & Palliative Care
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
Autonomic breathing abnormalities in Rett syndrome: Caregiver perspectives in an international database study
Tags: 2017, abdominal bloating, Adult, Article, autonomic dysfunction, bloating, breath holding, breath-holding, breathing difficulties, breathing disorder, Breathing disorders, breathing pattern, Caregiver, characteristics, Child, Data Base, Developmental Disability, Downs J, Epstein A, Female, Genotype, Heyworth J, Human, hyperventilation, International database, Journal of Neurodevelopmental Disorders, Leonard H, MacKay J, Male, mecp2, Mutation, Noninvasive Ventilation, onset age, oxygen, Priority Journal, Questionnaire, Rare disorder, rebreathing, Rett syndrome, School Child, Trajectory, Wong K
A simple system for symptom assessment in pediatric palliative care patients with cancer: A preliminary report
Tags: 2018, Anorexia, Bruera E, Caregiver, Charone M, Child, conference abstract, Controlled Study, Dibaj S, Fatigue, Female, Health Care Quality, Human, insomnia, Irritability, Journal of Clinical Oncology. Conference, Liu D, Loss Of Appetite, Madden K, Major Clinical Study, Male, Malignant Neoplasm, Mills S, nervousness, Oncology 2019 List, Pain, Palliative Therapy, Symptom Assessment, Williams J L
Impact of Animal-Assisted Interaction on Anxiety in Children With Advanced Cancer and Their Caregivers
Tags: 2023, 2023 SE3 - Oncology, Advanced Cancer, Akard TF, Animal Experiment, Animal Model, Animal Shells, Animals, Anticipation, anxiety, Article, Cancer Patient, Cancer Recurrence, Caregiver, Caregivers, Child, Comparative Effectiveness, Controlled Study, Cowfer BA, Dietrich MS, Dog, Feasibility Study, Female, Gilmer MJ, Human, Journal of Palliative Medicine, Mahoney AB, Male, Newton JL, Nonhuman, Only Child, Palliative Therapy, Patient Care, pediatric patient, refractory disease, State Trait Anxiety Inventory
How Can We Measure Quality of Dying, Death, and Quality of Care at the End-of-Life for Children and Young Adults? A Scoping Literature Review
Tags: 2022, abstract, Adult, advanced, Cancer, CARE, Caregiver, Child, Conference, controlled, Cooper M, Cox V, Disease, Female, Flemming K, Fraser L, Gillman C, Heart, Human, intensive, Life, Male, Mayland CR, Mother, Pain, Palliative, Palliative Medicine, Patient, Pediatric, Powell P, Quality, Questionnaire, Review, September 2022 List, Sibling, spiritual, study, Sunderland K, systematic, Taylor P, terminal, Therapy, Turner N, Unit, young, Zeigler L
Supporting the Suffering of Caregivers in Neonatal Palliative Care [French]
Accompanying newborns in palliative care remains difficult for professionals. Representations, fears and real difficulties are all factors that put them to the test. Supervision in…
Dysphagia in Rett Syndrome: A Descriptive Study
Tags: 2017, Adolescent, Annals of Otology, Rhinology and Laryngology, apraxia, Bronchitis, Caregiver, characteristics, Child, Cocca S, Complication, De Felice C, Deterioration, Diagnosis, drug fatality, Dysphagia, Feeding, feeding difficulties, Female, hand movement, Human, Human Tissue, Livi W, Major Clinical Study, Mezzedimi C, neuropsychiatry, Normal Human, Otorhinolaryngology, Prevention, progressive feeding deterioration, Psychosexual Development, Rett syndrome, Speech, tongue, Trajectory
Vulnerabilities experienced by family members/caregivers of children with chronic conditions
Tags: 2023, Article, Caregiver, Child, Child Health, Chronic Disease, Family, Gabatz RIB, Health Care Personnel, Health Service, Hense TD, Human, Interview, locomotion, Milbrath VM, November List 2033, Only Child, Palliative Therapy, Physis, Qualitative Research, Systematic Review, Thematic Analysis, Vaz JC, VULNERABILITY, Wellbeing
Continuity of care for children with complex chronic health conditions: parents' perspectives
The integration of palliative care in Dr Congo "a Model of Sustainability": A field study
Tags: 2018, Analgesia, capacity building, Caregiver, Child, conference abstract, Congo, Congolese (Kinshasa), Developing World 2019 List, doctor nurse relation, Female, field study, Home Care, Human, Journal of Global Oncology, Leadership, Major Clinical Study, Male, Mubeneshayi Kananga A, Organization, Palliative Therapy, Practice Guideline, Primary Health Care, sensitization, Training, uganda, Volunteer
Care with love: Parents' experiences in caring their child with cancer under palliative care
Tags: 2018, Allenidekania A, Caregiver, Child, Clinical Article, conference abstract, daily life activity, Data Analysis, Fatigue, Fear, Female, Human, Interview, jealousy, Male, Malignant Neoplasm, Nafratilova M, Nurse, Oncology 2018 List, Palliative Therapy, Pediatric Blood and Cancer, Phenomenology, primary medical care, Sibling, Uncertainty, Wanda D
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
A psychological experience assessment protocol of parent caregivers in paediatric palliative care
Tags: 2023, Adult, Annals Of Medicine, Article, Caregiver, Child, Clinical Article, Coping Behavior, Coping Strategy Questionnaire, February List 2024, Human, Nogueira AJ, Palliative Therapy, Parent, Portugal, psychologic assessment, Questionnaire, Ribeiro MT, Semi Structured Interview, Social Support, Therapy, United Kingdom, VULNERABILITY
The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care
Tags: 2024, Adolescent, April List 2024, Article, Caregiver, Child, Clinical Article, clinical assessment tool, Clinical Practice, Clinics and Practice, Coping, Coping Strategy Questionnaire, Family, Female, grandchild, grandparent, Human, Male, Nogueira AJ, Palliative Care, Palliative Therapy, Portugal, psychologic assessment, Ribeiro MT, Semi Structured Interview, Sibling, Social Support
Flourishing, religion, and burnout among caregivers working in pediatric palliative care
Tags: 2024, Adolescent, April List 2024, Article, Burnout, Caregiver, Child, Controlled Study, Convenience Sample, Coping, Cross-sectional Study, Doolittle BR, Dying, Female, Human, International Journal of Psychiatry in Medicine, Job Satisfaction, job stress, life satisfaction, Male, Multidisciplinary team, Oberholzer AE, Palliative Care, Palliative Therapy, Prevalence, Qualitative Analysis, Religion, South Africa, terminally Ill Patient, work environment
Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer
Tags: 2022, 2022 Special Edition 3 - Oncology List, Adolescent, Adult, Altschuler A, Brock KE, Buchanan S, Caregiver, Casperson M, Chao CR, Child, Cooper RM, Fasciano KM, Fisher L, Humans, JCO Oncology Practice, Josephs I, Kolevska T, Kushi LH, Lakin JR, Lefebvre A, Mack JW, Neoplasms, Neoplasms/th [therapy], Odejide OO, Palliative Care, Rodrigues G, Schwartz CM, Shalman DM, Vega B, Wall CB, Wiener L, Young Adult
Caregiver-reported impact on quality of life and disease burden in patients diagnosed with metachromatic leukodystrophy: Results of an online survey and a qualitative interview
Tags: 2020, Adolescent, Adult, April 2020 List, biomedical technology assessment, Bone Marrow Transplantation, Calcagni C, Caregiver, Child, Clinical Article, conference abstract, Controlled Study, Disease Burden, enzyme replacement, European Quality of Life 5 Dimensions Questionnaire, Female, Follow Up, France, Germany, Howie K, Human, Human Tissue, Infant, Institutional Review, Interview, investment, juvenile, Male, Metachromatic Leukodystrophy, Molecular Genetics and Metabolism, Multicenter Study, Palliative Therapy, Pang F, Patient Advocacy, Patient Care, preliminary data, Quality Of Life, Recall, Sample Size, Shapovalov Y, Walz M, Wellbeing, Wilds A
Mindful Movement: Tai Chi, Gentle Yoga, and Qi Gong for Hospitalized Pediatric Palliative Care Patients and Family Members
Tags: 2018, adverse outcome, Caregiver, Child, Hospital Patient, Human, Intensive Care Unit, Journal of Palliative Medicine, Letter, mindfulness, movement therapy, November 2018 List, occupational therapist, Palliative Therapy, Parry SM, pediatric patient, qigong, Quality Of Life, Staenberg B, Tai Chi, Weaver MS, Yoga
Perceptible end-of-life signs in PICU, a prospective study
Tags: 2019, Annals of Intensive Care, Artificial Ventilation, bradycardia, Brain Death, Caregiver, Cause Of Death, Child, Chronic Disease, Clinical Article, conference abstract, cyanosis, Drug Withdrawal, edema, February 2020 List, Human, Hypotension, Le Bourgeois F, Male, Naudin J, Neurologic Disease, pallor, Pediatric Intensive Care Unit, petechia, Pierron C, Poncelet G, Prospective Study, respiratory failure, skin color, Sommet J, time of death
Models of Care Delivery for Children With Medical Complexity
Unfolding parental knowledge, attitudes, and beliefs toward palliative care for children with cancer
Tags: 2023, 2023 SE3 - Oncology, Abboud MR, Article, Caregiver, Child, Childhood Cancer, Demography, Education, Educational Status, Emotion, Fares S, Female, Huijer HAS, Human, Lebanon, Major Clinical Study, Male, Multicenter Study, Noureddine S, Pain, Palliative Care, Palliative Therapy, Pediatric Blood and Cancer, Pediatrics, quantitative analysis, Questionnaire, Rassam RS, Smith EML, Structured Interview, Wolfe J
Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study
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
Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer
Tags: 2022, 2022 Special Edition 3 - Oncology List, Adolescent, adolescent and young adult, Bakitas M, Cancer, Caregiver, Communication, Currie ER, Death, End Of Life, Female, Gilbertson-White S, Human, interpersonal, Journal Of Adolescent And Young Adult Oncology, Keenan MA, Lindley LC, Mack JW, Neoplasm, Palliative Care, Physician-patient relationship, Psychology, Roeland EJ, Schulz GL, Sisk BA, Terminal Care, Young Adult
Supporting parental caregivers of children living with life-threatening or life-limiting illnesses: A Delphi study
Tags: 2018, Article, Bally JMG, Basic Needs, Caregiver, Child, Consensus, Delphi Study, Diagnosis, Family Nursing, Feasibility Study, February 2019 List, Female, Hodgson-Viden H, Holtslander L, Human, Human Experiment, Journal for specialists in pediatric nursing : JSPN, Major Clinical Study, Male, Mpofu C, Nurse, Peacock S, Pediatrics, Physician, Self Care, Smith NR, Social Worker, Spurr S, theoretical study, Zimmer M
A Investigation into Hope, Self-Efficacy, Distress and Uncertainty in Parents Who Have A Child with A Life-Threatening or Life-Limiting Illness
Tags: 2022, Article, Bally J, Behavior, Burles M, CARE, Caregiver, Child, Children, Controlled Study, Demographics, Distress, exploratory, Families, financial management, Hope, Human, Journal of Pediatric Nursing, life-limiting illness, Life-threatening illness, McHaro K, Nurse, October 2022 List, parental leave, Pediatric, quantitative analysis, Research, Self Concept, Self-efficacy, Spurr S, Syndrome, Uncertainty
Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life
Tags: 2023, Adolescent, Article, Bateman S, Beitman A, Bereavement Support, Caregiver, Child, Clinician, Community, community integration, Controlled Study, Convenience Sample, Cost Effectiveness Analysis, Disease Management, Family, February List 2024, Ferreira E, Gabovitch E, Human, Interpersonal Communication, Interview, Journal of Palliative Medicine, Jozan A, Male, Mental Health, Merriam G, Padgett K, Pain, Palliative Therapy, participatory research, physical well-being, Psychological Well-being, Quality Of Life, Savageau J, Self Care, Sibling, Socialization, Spiritual Care, Wang Y, Young M
Guidance on forgoing life-sustaining medical treatment
Tags: 2017, Apparent Life Threatening Event/th [therapy], Article, Awareness, Boss RD, Caregiver, Carter BS, Child Abuse, Child Care, Christian CW, Clinical Decision Making, Comatose Patient, Consensus, Consultation, Critical Illness/th [therapy], Davies D, Death, Death By Neurologic Criteria, Dell ML, Developmental Disorder/th [therapy], Diekema DS, Disease Burden, Disease Course, Elster N, Ethical Decision Making, Extremely Low Gestational Age, Family Decision Making, Family Stress, Feudtner C, Flaherty EG, Fortson BL, Foster Care, Gavril AR, Gestational Age, Goal Attainment, Guinn-Jones M, Hauer JM, Health Belief, High Risk Population, Human, Humphrey LM, Hurley TP, Hydration, Idzerda SM, Imaizumi S, Imminent Death, Informed Consent, Intensive Care, Interpersonal Communication, Katz AL, Klick J, Klipstein S, Laskey A, Laventhal N, Legal Aspect, Legano LA, Leventhal JM, Life-sustaining Medical Treatment, Linebarger JS, Lord B, MacAuley RC, MacMillan H, Medical Ethics, Medical Expert, Medical Information, Medical Procedures, Medical Specialist, Medically Administered Nutrition And Hydration, Moon MR, Neglect, Neurologic Disease/di [diagnosis], November 2017 List, Nutrition, Okun AL, Opel DJ, Oxygenation, Pain/th [therapy], Palliative Therapy, Parker S, Patient Care Planning, Pediatrician, Pediatrics, Practice Guideline, Priority Journal, Prognosis, Quality Of Life, Resuscitation, Rivera F, shared decision making, Social Support, Spiritual Care, Statter MB, Stedt E, Survival, Teamwork, Terminal Care, Tissue Perfusion, Uncertain Prognosis, Weise KL
Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study
Tags: 2023, Archives of Disease in Childhood, Article, Caregiver, Case Study, Chan SCW, Child, Child Health, Chiu ATG, Diagnosis, February List 2024, Female, Fung CW, Health Care Personnel, Ho ACH, Ho EKY, Ho JMC, Hong Kong, Human, Internet, Interview, Lai TC, Lam KKW, Lee LPY, Lee SWY, Li CH, Li CK, Male, Medical Information, Nurse, Palliative Therapy, Physician, Semi Structured Interview, Social Support, Therapy, Tsui KW, Wong FKY
The Impact of Music Therapy in Paediatric Palliative Care in Residential Hospice
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
How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research…
Tags: 2016, Adolescent, Adult, Attitude Of Health Personnel, Attitude To Health, Caregiver, Cerebral Palsy, Child, Child Preschool, de Vos MA, Decision Making, Disabled Children, Dissent And Disputes, End Of Life, Ewals FV, Female, Healthcare Professional, Humans, Infant, Infant Newborn, Intellectual Disability, Male, Middle Aged, Neurologists, Palliative Care, Parents, Pediatricians, Professional-family Relations, Qualitative Research, Research in Developmental Disabilities, Resuscitation Orders, Retrospective Studies, September 2016 List, Severity Of Illness Index, Shared Decision-making, Terminal Care, van Goudoever JB, Willems DL, Young Adult, Zaal-Schuller IH