Browse Items (80 total)
- Tags: Caregiver
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
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
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
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
Situational analysis and needs assessment regarding the availability and extent of pediatric palliative care services in the philippines
Tags: 2019, Awareness, behavior change, Cajucom L A N, care behavior, Caregiver, Child, Childhood Cancer, conference abstract, Controlled Study, Counseling, Developing World 2019 List, financial management, Fuentes R K T, Garcia P G, Health Care Delivery, Health Care Personnel, health care planning, Human, Interview, JNCCN Journal of the National Comprehensive Cancer Network, long term survival, Manago R K B, Needs Assessment, Nutrition, Oruga M D P, Palliative Therapy, Philippines, psychosocial care, Ramos R C, Ridulme Q R, travel, Vinas M J G
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
Increasing accurate palliative care consultation in the NICU
Tags: 2018, Caregiver, Child, conference abstract, Controlled Study, February 2020 List, Human, Humphrey L, International Classification of Diseases, Length Of Stay, mortality risk, Newborn, Nurse Practitioner, outcome assessment, Palliative Therapy, Patient Referral, Pediatrics, Satisfaction, Schlegel A, staff training, Total Quality Management
Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study
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
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
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
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
Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study
Tags: 2019, accelerometry, acceptability, Adult, Article, Australia, burden, Caregiver, Child, Clinical Article, Cohort Analysis, cohort study, Controlled Study, Currow D C, European Quality of Life 5 Dimensions Questionnaire, Feasibility, Feasibility Study, Female, Human, Jones T A, Karnofsky Performance Status, Male, multimedia, numeric rating scale, October 2019 List, Olds T S, Outpatient, Palliative Care, Palliative Medicine, Palliative Therapy, Pilot Study, Quality Of Life, Recall, time-use, Williams M T
The agony of the child with complexity: Exploring the psychological impact on parents caring for children with complex healthcare needs
Tags: 2019, Archives of Disease in Childhood, Bradbury M, Caregiver, Child, conference abstract, Crothers E, Depression, disease exacerbation, Female, health care need, Human, Ireland, Lewis S, Male, medical leave, Medline, Mental Stress, meta analysis, Murphy A M, North America, O'Gorman C, October 2019 List, Parental Stress, Prevention, Psychological Well-being, publication, Qualitative Research, Sample Size, Social Isolation, Social Support, Systematic Review
Providing cost-effective and coordinated care for children with medical complexity
Tags: 2019, administrative personnel, Adolescent, Archives of Disease in Childhood, Artificial Ventilation, Caregiver, Cerebral Palsy, Child, Chow C, conference abstract, Congenital Heart Disease, Controlled Study, Diagnosis, Fatigue, Female, Gastrostomy, Home Care, Human, limited mobility, machine, Major Clinical Study, Male, Medical Technology, Multicenter Study, Multidisciplinary team, Neuromuscular Disease, Nurse, October 2019 List, Outpatient, Pediatrician, salary, Shahdadpuri R, Stress, Tracheostomy, ventilator, working time
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
Supportive care in children with spinal muscular atrophy type 1: Results from a french multicentric study
Tags: 2019, August 2019 List, Barnerias C, Cances C, Caregiver, Chabrol B, Child, Clinical Research, conference abstract, Controlled Study, Cuisset J M, Death, Desguerre I, Developmental Medicine and Child Neurology, Drug Therapy, Female, France, Gastrostomy, History, Hully M, Human, Intensive Care Unit, Isapoff A, Major Clinical Study, Male, new drug, Noninvasive Ventilation, nusinersen, nutrition supplement, Palliative Therapy, Physician, Prospective Study, Rivier F, Ropars J, Sabouraud P, Sedation, Sedative Agent, standardization, Vuillerot C, Werdnig Hoffmann disease
Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care
Tags: 2019, Adolescence, Adolescent, Adult, Article, Attitude To Health, August 2019 List, Brown D E, Caregiver, Carney S D, Clinical Article, Communication, Cystic Fibrosis, Dellon E P, Female, Hailey C E, Health Care Personnel, Health Education, Helms S W, Human, lung fibrosis, Male, Palliative Care, Palliative Therapy, Parent, Patient Education, Pediatric Pulmonology, Perception, Prieur M G, Priority Journal, Qualitative Analysis, Schmidt H J, Semi Structured Interview, Shay R
Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research
Tags: 2019, Adolescent, Adult, Article, Artioli G, Busani E, Caldarelli V, Caregiver, Child, children's voice, Cinahl, Di Marco V, Female, Ghirotto L, Human, Language, Life, Male, May 2019 List, Medline, Meta-summary, Neoplasm, Pain, Palliative & Supportive Care, Palliative Therapy, Pediatric Palliative Care, pediatric patient, Psycinfo, publication, Qualitative Research, Salvati M, Systematic Review, Voice
Introduction to a Novel Palliative Care Intervention for Family Caregivers of Children and Adolescents Living with Rare Diseases (TH308)
Tags: 2019, Adolescent, Advance Care Planning, Alderfer M, Caregiver, Child, Comorbidity, conference abstract, Controlled Study, Feasibility Study, Female, Fraser J, Fratantoni K, Friebert S, Gaines J, health disparity, Human, Human Experiment, Human Immunodeficiency Virus, Interview, Journal of Pain and Symptom Management, Lyon M, Major Clinical Study, Male, Malignant Neoplasm, March 2019 List, Medical Care, Needle J, Needs Assessment, Nonhuman, Palliative Therapy, Pediatrics, Rare Disease, rigor, Skill, Social Isolation, Uncertainty, videorecording, Wellbeing, Wiener L
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
Development and delivery of a one-stop multidisciplinary clinic to provide comprehensive palliative and supportive care for children with cancer
Tags: 2018, Ambulatory Care, Anis H, antibiotic agent, Arora R, Bagai P, Cancer Patient, Caregiver, Child, Chuki T, conference abstract, Crack L, dietitian, doctor nurse relation, Drug Therapy, Education, Female, financial management, Holistic Care, Hospital Patient, Human, Major Clinical Study, Male, Malignant Neoplasm, Multidisciplinary team, nutritional counseling, Oncology 2018 List, Outpatient, Pain, Palliative Therapy, patient coding, Pediatric Blood and Cancer, physiotherapist, Physiotherapy, Psychologist, Social Support, Taluja A, Terminal Care, wound
The Impact of Music Therapy in Paediatric Palliative Care in Residential Hospice
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
Spirituality among parents of children with cancer at AUBMC
Tags: 2016, cancer center, Cancer Nursing, Caregiver, Child, Childhood Cancer, Clinical Article, conference abstract, Developing World 2018 List, Doumit MA, Fear, Female, genetic transcription, Health Care Personnel, Human, Lebanon, Majdalani M, Male, Palliative Therapy, Powerlessness, Rahi A, Religion, Saab R, Semi Structured Interview, social needs, Spiritual Care
Primary palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members
Tags: 2018, Adult, Advance Care Planning, Awareness, Basile M, Caregiver, Chen E, Child, clinical assessment, conference abstract, Controlled Study, December 2018 List, Dellon EP, depression assessment, Education, Faro A, Female, Georgiopoulos A, Goggin JL, Goss CH, Hempstead SE, Hobler M R, Hospice, Human, Kavalieratos D, Kruskal Wallis test, lung, Major Clinical Study, Male, Pain Assessment, Palliative Therapy, Pediatric Pulmonology, Perception, Prognosis, Skill
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
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
Social Media Consequences of Pediatric Death
Models of Care Delivery for Children With Medical Complexity
Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences
Tags: 2014, Adolescent, advertizing, Akard TF, Article, Backlog, Cancer Nursing, Cancer Palliative Therapy, Cancer Patient, Cancer Recurrence, Cancer Research, Caregiver, Child, Childhood Cancer, click, computer, Diseases, Facebook, Female, Gilmer Mary Jo, Health Survey, Human, Income, Information Processing, Internet, Interpersonal Communication, Journal Article, legal guardian, Major Clinical Study, Male, mobile phone, Neoplasm, Nurse, Oncology, Only Child, Palliative Therapy, Parent, Parental Attitude, participant recruitment, Patient, Population, Priority Journal, Sample Size, School Child, social media, social network, Video Recording, Wray S
What do transplant physicians think about palliative care? A national survey study
Tags: 2017, Adult, Blood, bone marrow, Burns LJ, Caregiver, Child, conference abstract, Denzen E, El-Jawahri A, Female, friend, Graft Recipient, graft versus host reaction, hematologic disease, Hematopoietic stem cell transplantation, Hispanic, Hospice, Human, Human Tissue, LeBlanc TW, Male, March 2018 List, Mau LW, medical oncologist, Meyer CL, outpatient care, Palliative Therapy, Patient Referral, Perception, Petersdorf E, Questionnaire, Roeland EJ, Trust, United States, Wood WA
Continuity of care for children with complex chronic health conditions: parents' perspectives
Development and validation of the parent experience of child illness
The caregivers' psychosocial and economic effects of caring for terminally ill patients: The case of hospice Africa Uganda
Clinical spectrum of children receiving palliative care in Malaysian Hospitals
Tags: 2017, Abdul Manaf AM, Abdul Shukor INC, Acute Lymphoblastic Leukemia, Adolescent, Adult, Alias E, Bereavement, Caregiver, Cerebral Palsy, Chieng CH, Child, Child Care, Chong LA, Chromosome, Chromosome Aberration, Clinical Trial, Congenital Malformation, Controlled Clinical Trial, Controlled Study, Cross Sectional Study, Diagnosis, Duchenne Muscular Dystrophy, Education, Female, Follow Up, Hedra ZS, Hospital, Hospital Admission, Human, Icd-10, Infant, Khalid F, Khoo TB, Kuan GL, Major Clinical Study, malaysia, Male, Malignant Neoplasm, Medical Journal Of Malaysia, Multicenter Study, Needs Assessment, Newborn, Observational Study, Ong GB, Palliative Therapy, Patient Referral, Pediatrician, Prognosis, Razali H, Review, Spinal Muscular Atrophy, Teh SH, Wang JJ
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
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
Lived Experiences Of Parents Caring For A Child With A Life-limiting Condition In Australia: A Qualitative Study.
Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports.
AIM:
To provide an in-depth exploration of the prevalent lived…
Tags: 2016, Cancer, Caregiver, Caregivers, Collins A, Experiences, Families, Health Care Sciences & Services, Hennessy-Anderson N, Hosking S, Hynson J, Illness, Impact, Journal of Palliative Medicine, Life-limiting Conditions, March 2016 List, Medicine General & Internal, Of-life, Pediatric Palliative Care, Public, Public Environmental & Occupational Health, Qualitative, Remedios C, Services, Support, Thomas K, Threatening Conditions