Browse Items (80 total)
- Tags: Caregiver
"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
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
A pilot study on sports activities in pediatric palliative care: just do it
Tags: 2023, Agosto C, Article, Avagnina I, Benini F, BMC Palliative Care, Caregiver, Child, Controlled Study, Exercise, Female, Giacomelli L, Human, International Classification of Functioning Disability and Health, June 2022 List, juvenile, Maghini I, Male, mental deficiency, motor dysfunction, Palliative Care, Palliative Therapy, Papa S, Perilongo G, Personal Experience, physical activity, Pilot Projects, Pilot Study, Quality Of Life, Questionnaire, Salamon E, Santini A, Sports, Swimming
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
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
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
Are we on the same page? Exploring pediatric patients' involvement with advance care planning
Tags: 2023, Aasen ERHV, acquired immune deficiency syndrome, Adolescent, Adult, Advance Care Planning, Caregiver, Child, Cystic Fibrosis, Emotion, Female, Human, Journal of Pain and Symptom Management, June 2022 List, Lee A, Male, Medline, Neurology, oSovik ML, outcome assessment, Palliative Therapy, Patient Participation, pediatric patient, Randomized Controlled Trial (topic), Review, Stordal K, Systematic Review, Young Adult
Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis
Tags: 2023, Article, Atkin K, care behavior, Caregiver, Child, Clinical Article, Content Analysis, Diagnosis, Ewing G, Father, February List 2024, Female, Fisher V, Fraser LK, Grande G, Human, Male, Needs Assessment, Palliative Medicine, Palliative Therapy, Parent, School Child, Secondary Analysis, social media, special situation for pharmacovigilance
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
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
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
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
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
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
Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study
Tags: 2023, 2023 SE3 - Oncology, Abdal-Rahman M, Adolescent, Adult, advanced cancer/dm [Disease Management], Ahmed F, Al-Awady S, Alajarmeh S, Alarjeh G, Alnassan A, Alrjoub W, Article, Attitude To Health, Boufkhed S, Caregiver, Child, Cross-sectional Study, doctor patient relationship, Female, Frontiers in Oncology, Guo P, Harding R, Health Care Personnel, Health Care Policy, health care practice, Human, Human Experiment, implicit bias, Information Dissemination, Jordan, Jordanian, Kutluk T, Male, Medical Information, myelodysplastic syndrome, myeloproliferative disorder, Palliative Therapy, pediatric patient, Qualitative Research, refugee, reticuloendothelial tumor, Semi Structured Interview, Shamieh O, Yurdusen S
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
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
Continuity of care for children with complex chronic health conditions: parents' perspectives
Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study
Describing the Psychosocial Profile and Unmet Support Needs of Parents Caring for a Child with a Life-Limiting Condition: A Cross-Sectional Study of Caregiver-Reported Outcomes
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
Development and validation of the parent experience of child illness
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
End of Life Communication among Caregivers of Children with Cancer: A Qualitative Approach to Understanding Support Desired By Families
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
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
Expectations and knowledge of cannabidiol therapy for childhood epilepsy — A German caregiver survey
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
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
Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Tags: 2022, Adult, Advance Care Planning, Aoun SM, Article, attitude to illness, body movement, Caregiver, Child Care, Children, Cohort Analysis, collaborative care team, Content Analysis, Conversation, Disease Burden, Family Centered Care, Family Decision Making, Feasibility Study, Female, Fratantoni K, Human, Human Relation, July List 2023, Livingston J, Lyon ME, Palliative Therapy, Parent, Parental Attitude, pediatric patient, psychosocial care, Qualitative Analysis, Rare Disease, Schellinger SE, social connectedness, videorecording
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
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
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
Tags: 2020, Adolescent, Adult, Aged, Article, Battles H, Bedoya S Z, Bereavement, Caregiver, Child, childhood cancer/dm [Disease Management], Content Analysis, Emotion, Female, Gerhardt C A, health care need, Human, Infant, Interpersonal Communication, Mack J, Major Clinical Study, Male, Newborn, Nurse, Oncology 2020 List, open ended questionnaire, Parent, Pediatric Blood and Cancer, pediatric oncologist, pediatric patient, Priority Journal, Psycho-Oncology, Psychologist, Quality Of Life, quantitative analysis, Retrospective Study, social media, Social Support, Social Worker, support group, Tager J, Terminal Care, Thematic Analysis, time of death, Wiener L, worker
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
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
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
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
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
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