Browse Items (404 total)
- Tags: Quality Of Life
Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination
Tags: 2020, 2024 SE2 - Parent Perspectives, Academic Pediatrics, Care coordination, caregiver emotional well-being, caregiver health-related quality of life, Caregivers, Child, Children With Medical Complexity, Cook S, Family, Henderson C, Humans, Quality Of Life, Ray K, Surveys And Questionnaires, Yu JA
The Experience of Parental Caregiving for Children With Medical Complexity
Tags: 2023, 2024 SE2 - Parent Perspectives, Arje D, Caregivers, Caregivers/psychology, Child, Children With Medical Complexity, Chronic Disease, Clinical Pediatrics, Cohen E, Esser K, Humans, Mental Health, Moore C, Orkin J, Parenting, Parents/psychology, Qualitative Research, Quality Of Life, Teicher J, Weiser N
Psychosocial factors affecting the quality of life of parents who have children with home mechanical ventilation
Tags: 2024, 2024 SE2 - Parent Perspectives, Adult, Bakirarar B, Bayav S, Child, Child Preschool, Cobanoglu N, Cross-sectional Studies, Duman B, Female, home care services, home mechanical ventilation, Humans, Male, Middle Aged, Ozcan G, Parents, Parents/psychology, Pediatric Pulmonology, Quality Of Life, Quality Of Life/psychology, Respiration Artificial/psychology, Social Support, Surveys And Questionnaires, Tekin MN, Zirek F
Healthcare for children depend on medical technology and parental quality of life in Japan
Tags: 2022, 2024 SE2 - Parent Perspectives, Arai J, Caregivers, Child, Chronic Disease, Cross-sectional Studies, Disabled Children, Health Service, Hirasawa A, Humans, Japan/epidemiology, Matsuzawa A, Parents, Patient Acceptance of Health Care, Pediatrics International, Quality Of Life, Shiroki Y, Technology
Health and quality of life among the caregivers of children with disabilities: A review of literature
What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change
Children's and adolescents' perspectives on living with advanced cancer: A meta-synthesis of qualitative research
Tags: 2024, 2025 SE1 - Oncology, Adolescent, Advanced Cancer, Ali R, An E, Article, Awareness, Child, Disease Management, Emotional Stress, ethnography, Female, Human, Johnson A, Major Clinical Study, Male, Only Child, Palliative Therapy, Qualitative Research, Quality Of Life, Quality of Life Research, Widger K, Wilson C
Is it early enough? The authentic meaning of the pediatric palliative approach between early and late referral in pediatric oncology: a case study
Tags: 2024, 2025 SE1 - Oncology, Adolescent, Adult, Advance Care Planning, Affinita MC, anxiety, Article, Artificial Ventilation, Avagnina I, Benini F, Brain Metastasis, Child, Childhood Cancer, Clinical Article, cognitive behavioral therapy, colonoscopy, community hospital, computed tomographic angiography, doctor patient relationship, Dysphagia, Dyspnea, facial nerve paralysis, Female, Follow Up, Frontiers in Oncology, Headache, Health Promotion, hearing impairment, hematothorax, hemoptysis, Hospitalization, Human, Intensive Care Unit, Life Expectancy, Morphine, nerve paralysis, neurofibromatosis type 1, nuclear magnetic resonance imaging, Oncology, oncology ward, Palliative Therapy, Patient Referral, Quality Of Life, Questionnaire, refugee, Rhabdomyosarcoma, Santini A, Terminal Care, thorax pain, tracheobronchial toilet, Verbal Communication, visual field, Zanin A
Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL
Tags: 2024, 2025 SE1 - Oncology, Adolescent, Advanced Cancer, Child, Current Oncology, Duval M, Felipe J, Female, Humans, Male, Marquis MA, measure, Michon B, Neoplasms/psychology, Olivier-D'Avignon M, Palliative Care, Patient Reported Outcome Measures, Pediatric Cancer, Perreault S, Quality Of Life, Quality Of Life/psychology, Robichaud LA, Self Report, Sultan S, Surveys And Questionnaires, Tyo-Gomez M
Symptoms of advanced cancer in palliative medicine: a longitudinal study
Tags: 2023, 2025 SE1 - Oncology, Antineoplastic Agents, BMJ Supportive and Palliative Care, Child, Groenvold M, Hansen MB, Humans, Longitudinal Studies, Neoplasms, Neoplasms/co [complications], Neoplasms/ep [Epidemiology], Neoplasms/th [therapy], Pain, Palliative Care/px [psychology], Palliative Medicine, Petersen MA, Quality Of Life, Rojas-Concha L, Surveys And Questionnaires
Assessment of knowledge, attitude, and practice and associated factors towards palliative care among health care providers to the pediatric oncology patients in southern Philippines
Tags: 2020, 2025 SE2 - LRS, Attitude, Awareness, Cambia JM, cancer center, Cancer Prevention Research, chi square distribution, Child, Childhood Cancer, conference abstract, Cross-sectional Study, Data Analysis Software, Disease Management, Female, Health Care Personnel, Hospice Care, Human, Knowledge, Male, Medical Specialist, Nurse, Oh JK, Palliative Care, Palliative Therapy, Pasaol JC, Patient Referral, Philippines, Professional Development, Quality Of Life, Rosal J, staff training, Stigma, structured questionnaire, tertiary care center, Therapy
Physician Perceptions of and Barriers to Pediatric Palliative Care for Children with Cancer in Brazil
Tags: 2023, 2025 SE2 - LRS, Adult, Agulnik A, Antunes Geronutti Ayub D, Article, Baker JN, Beatriz Costa Neves Do Amaral A, Bereavement, Boldrini E, Brazil, Cancer Palliative Therapy, Child, Childhood Cancer, clinical assessment, Consultation, Cristina Cunha Ferreira EFonseca I, De Oliveira Junior A, Devidas M, emotional support, Esmeraldo Andrade De Almeida A, Female, Francisco Oliveira De Lima A, Friedrich P, Godfrey A, Grief, Health Care Access, health care need, Health Education, Health Survey, Home Care, Human, JCO Global Oncology, Job G, Loggetto P, Lopes Garcia J, Male, McNeil MJ, Medical Expert, Metzger ML, Pediatric Palliative Care, Pediatrics, physical activity, Physician, Physician Attitude, professional knowledge, Qualitative Analysis, Quality Of Life, Regina Costa Murra G, Spiritual Care, World Health Organization
PACOPED QL: Development and evaluation of the quality-of-life scale for children with life-Threatening illnesses
Tags: 2025, Adolescent, Child, Child Preschool, Chronic Disease, Cross-sectional Studies, Cross-sectional Study, devices, Female, Human, Humans, Male, March List 2025, PACOPED QL, Palliative And Supportive Care, Palliative Care, Palliative Therapy, Pediatric Palliative Care, Pediatrics, Pilot Projects, Pilot Study, Preschool Child, Procedures, Psychology, Psychometrics, psychometry, Quality Of Life, Questionnaire, Reliability, Reproducibility, Reproducibility of Results, Riera-Negre L, Rosselló MR, Surveys And Questionnaires, Validity, Varona J, Verger S
Complications and benefits of enteral feeding in children with progressive neurological disease in a palliative care service: a retrospective study
A Rapid Review on Shared Decision Making in Pediatric Palliative Care and End-of-Life Care: Implications for Clinical Practice, Research, and Policy
Tags: 2024, Article, Child, Clinical Practice, Clinician, Cormack CL, Fisher B, Hagen KA, Haskamp AC, Human, Interpersonal Communication, Journal of Hospice and Palliative Nursing, Logan A, March List 2025, Medical Society, Palliative Therapy, Quality Of Life, rapid review, shared decision making, Systematic Review, Terminal Care
Virtual Support for Bereaved Parents: Acceptability, Feasibility, and Preliminary Efficacy of HOPE Group
Tags: 2024, Adult, Aged, Archer E, Article, Bereavement, Bereavement Support, Caregiver, Child, Child Death, Clinical Article, Drouin K, Female, Grief, Hayes A, Hildenbrand AK, Human, Journal of Palliative Medicine, Male, March List 2025, meaning-making, Middle Aged, Miller EG, Palliative Therapy, Parent, Quality Of Life, support group, Therapy
Beyond treatment: Understanding family experiences in pediatric palliative care
Tags: 2024, Adolescent, Adult, Andres de Alvaro M, anxiety, Article, Burnout, care behavior, Caregiver, Caregiver Support, Child, Convenience Sample, CPAP device, Del Villar GP, Drug Therapy, Family, Garcia ML, Gene Expression, Health Care Personnel, Home Care, Human, Interpersonal Communication, Interview, lens (optics), Male, March List 2025, Mood, Palliative And Supportive Care, Palliative Therapy, Patient Care, Quality Of Life, Ramos PD, Semi Structured Interview, Tamayo-Morales O, Therapy
Exploring the experiences of children's palliative care for forced migrant families in the United Kingdom: an interpretative phenomenological study
Tags: 2024, alienation, Article, Bradbury-Jones C, Burnout, Child, Childhood Disease, Clancy M, Communication Barrier, Coping Strategy Questionnaire, Family, forced migrant, forced migration, Frontiers in Pediatrics, Grief, Health Care Personnel, Hospice Care, Human, interdisciplinary education, March List 2025, moral reasoning, Palliative Therapy, Personal Experience, Phenomenology, Phillimore J, Quality Of Life, refugee, Spiritual Care, Taylor J, United Kingdom
Advancing Advance Care Planning: Evaluating a Revised Version of Voicing My CHOiCES
Tags: 2024, Adolescent, Adult, Advance Care Planning, Article, Bedoya S, Child, Ciampa D, Female, Frediani J, Gordon M, Human, identifiable information, Journal of Palliative Medicine, Kasper K, Male, March List 2025, Moynihan L, Pao M, Quality Of Life, Ruble K, Structured Interview, Wiener L, Young Adult, Zabokrtsky K
Prevalence of pain in the last 2 weeks of life in hospitalized pediatric patients
Tags: 2024, Adolescent, Adult, Analgesia, Article, Bastidas-Legarda S, Child, Data Analysis Software, Female, Flores-Munoz MA, Gutierrez-Cortes C, Hernandez-Ramirez E, Hospital Patient, Hospitalization, Human, Infant, longitudinal study, Major Clinical Study, Male, March List 2025, Medical Practice, Newborn, Observational Study, Pain Assessment, Pain Intensity, Pain/ep [Epidemiology], Palliative Therapy, pediatric patient, Prevalence, Quality Of Life, Questionnaire, Retrospective Study, Revista Medica del Hospital General de Mexico, SPSS version 21, terminally Ill Patient
DMD-YOUNG: paediatric palliative care for children with a slowly progressive neuromuscular disorder in transition to adulthood
Tags: 2024, Adolescent, ADULTHOOD, Annexstad E, Child, conference abstract, Controlled Study, Coping, Coping Strategy Questionnaire, Duchenne Muscular Dystrophy, Employment, empowerment, February List 2025, housing, Human, Knowledge, Life Expectancy, Male, Medical Information, muscle function, Neuromuscular Disease, Neuromuscular Disorders, Nordstrom M, Norway, Palliative Therapy, Quality Of Life, Ramberg C, Rosenberger A, Social Behavior, social life, social network
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
The Psychiatric Care of Children and Young Adults With Neurodegenerative Diseases
Tags: 2024, Adolescence, Aggression, Agitation, antiemetic agent/pv [Special Situation for Pharmacovigilance], anxiety disorder, apathy, appetite stimulant/pv [Special Situation for Pharmacovigilance], Augustine EF, automutilation, Behavior Therapy, body weight gain, Brown HB, Caregiver Burden, Child Psychiatry, Childhood Mortality, choreoathetosis/dt [Drug Therapy], cognitive defect/si [Side Effect], collaborative care team, Comorbidity, degenerative disease/dm [Disease Management], degenerative disease/dt [Drug Therapy], Dementia, disease exacerbation, Dysphagia, Editorial, Expectation, extrapyramidal symptom, February List 2025, feeding disorder, feeding tube, first-line treatment, gabapentin/dt [Drug Therapy], gabapentin/pv [Special Situation for Pharmacovigilance], Hauptman AJ, high risk behavior, Human, Huntington chorea/dm [Disease Management], iatrogenic disease/si [Side Effect], Interpersonal Communication, Irritability, Journal Of The American Academy Of Child And Adolescent Psychiatry, juvenile neuronal ceroid lipofuscinosis/dm [Disease Management], Lafora disease, Live Birth, Medication therapy management, mental health care, mirtazapine/pv [Special Situation for Pharmacovigilance], mood disorder, motor dysfunction, neuroleptic agent/ae [Adverse Drug Reaction], neurologic disease/dm [Disease Management], neuropsychiatry, obsession, onset age, Palliative Therapy, parenting education, parkinsonism, Patient Care, Patient Comfort, pediatric patient, perseveration, Polypharmacy, Prevalence, Prognosis, psychiatric neuropalliative care, psychoeducation, psychosis, Quality Of Life, quetiapine/dt [Drug Therapy], quetiapine/pv [Special Situation for Pharmacovigilance], responsibility, risperidone/dt [Drug Therapy], risperidone/pv [Special Situation for Pharmacovigilance], Seizure, sensory dysfunction, Side Effect, sleep disorder, Spasticity, Symptom, symptom burden, tardive dyskinesia/si [Side Effect], Tay Sachs disease, trazodone/dt [Drug Therapy], trazodone/pv [Special Situation for Pharmacovigilance], visual impairment, Young Adult
Demographic and clinical profile of children with congenital heart diseases receiving palliative care
Tags: 2024, Adolescent, Adult, Advance Care Planning, anxiety, Bodhanwala M, Cardiology In The Young, Child, Clinical Article, Cognition, conference abstract, Congenital Heart Disease, Consultation, Controlled Study, Dinand V, Dixit P, February List 2025, Human, intervention study, Jain S, Khanna S, Male, Medical Decision Making, Mishra J, oxygen concentrator, Palliative Therapy, Panda B, Patient Referral, Pediatric Quality of Life Inventory, Prabhu SS, Prognosis, Quality Of Life, Reoperation, Sumitra V, Surgery, Terminal Care
Influence of the functional intervention on the development of essential social skills in children with life-limiting conditions
Parent Narratives Provide Perspectives on the Experience of Care in Trisomy 18
Tags: 2024, Adult, American Journal of Medical Genetics, Part C: Seminars in Medical Genetics, Anderson R, Article, Bierer R, Carey J, Child, Chromosome Disorder, Clinical Article, Content Analysis, Diagnosis, Down Syndrome, Edwards syndrome, Female, heart surgery, Human, Infant Mortality, Male, Mladucky J, Narrative, November List 2024, Parent, Patient Comfort, Personal Experience, Qualitative Research, Quality Of Life, rearing, shared decision making, support group, Therapy, Trisomy 13, Trisomy 18
Evaluation of a perinatal palliative care program by SWOT analysis
Tags: 2024, Adult, Article, Catapano F, Corvaglia LT, Diagnosis, Female, Human, Interpersonal Communication, Knowledge, Locatelli C, Major Clinical Study, Newborn, November List 2024, Nursing Care, Palliative Therapy, Patient Referral, Pediatric Research, Pregnancy, Prenatal Diagnosis, Quality Of Life, Ramacieri G, Retrospective Study, shared decision making, Sperti G
CARING FOR DYING CHILDREN: EXPERIENCES OF FAMILY CAREGIVERS OF CHILDREN RECEIVING PEDIATRIC PALLIATIVE TREATMENT
Tags: 2024, anxiety, Beck Anxiety Inventory, care behavior, Caregiver, Child, Clinical Article, conference abstract, Content Analysis, Correlation Analysis, Dying, Family, Fear, Human, Mental Health, Neuro-oncology, October List 2024, Palliative Therapy, Quality Of Life, Questionnaire, School Child, Semi Structured Interview, Tanriverdi M, Yilmaz GG
New worlds open up': A qualitative study on Wonder Lab practices in Dutch paediatric palliative care with parents, healthcare professionals, and students
Tags: 2024, Adolescent, Adult, Article, Bereavement, care behavior, Caregiver, diving, Experience, Female, Geuze L, Goossensen A, Health Care Personnel, Human, Interview, Life Expectancy, Middle Aged, October List 2024, Palliative Therapy, Parent, Physician, Qualitative Research, Quality Of Life, Schrevel S, SSM - Qualitative Research in Health, Training, University Hospital, van Driesten - van Roozen P
Polypharmacy in Children with Medical Complexity: A Cross-Sectional Study in a Pediatric Palliative Care Center
Tags: 2024, Adolescent, Adult, Agosto C, Analgesia, Article, Avagnina I, Baratiri F, Benini F, Caregiver, Caregiver Burden, Child, Children, Cross-sectional Study, Divisic A, drug cost, Drug Safety, eye drops, Female, Human, Infant, Maghini I, Male, Mengato D, nose spray, Observational Study, October List 2024, off label drug use, Palliative Therapy, Pediatrics, Pharmacoeconomics, Pivato L, Polypharmacy, Prevalence, Quality Of Life, Questionnaire, Roverato B, Rusalen F, special situation for pharmacovigilance, typographical error, Venturini F, Zanin A
Palliative Care for Dialysis-Dependent Pediatric Patients: A Survey of Providers, Nurses, and Caregivers
Tags: 2024, Adolescent, advanced practice provider, Article, Beveridge MS, Caregiver, Child, Consultation, Controlled Study, dialysis, Disease Management, Drug Therapy, Female, Human, Kidney360, Knowledge, Lipsitz J, Maddox K, Male, Nurse, October List 2024, Palliative Therapy, pediatric patient, Quality Of Life, special situation for pharmacovigilance, tertiary health care, Therapy
Pediatric Perspectives on Palliative Care in the Neurocritical Care Unit
Tags: 2024, Adult, Article, Bereavement Support, biological marker, Boss R, Child, Clinical Article, Consultation, Diagnosis, Female, Human, Infant, Interpersonal Communication, Male, Medical Specialist, Neurocritical care, neurological intensive care unit, October List 2024, Pain, Palliative Therapy, psychosocial care, Quality Of Life, Retrospective Study, Terminal Care, Vermilion P
Building a programme theory of a specialist paediatric palliative and hospice care programme: development process and methodological reflection
Tags: 2024, Article, BMC Palliative Care, Clinical Effectiveness, clinical protocol, empowerment, Eppel-Meichlinger J, Family, Haselmayer D, health care planning, Health Care Quality, Hospice Care, Human, Mayer H, Nagl-Cupal M, Palliative Therapy, pediatric patient, Pediatrician, Pediatrics, Psychological Resilience, Quality Of Life, Retrospective Study, September List 2024, stakeholder engagement, Theory, Treatment Outcome, Wallner M
Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review
Tags: 2024, Adaptation Psychological, Adolescent, Article, Awareness, Bmc Pediatrics, Burnout, Charepe Z, Child, Child Preschool, Chronic Disease, Continuity Of Patient Care, Decision Making, Diagnostic Accuracy, family functioning, Ferreira AM, geographic distribution, health care organization, health practitioner, Health Promotion, Health Transition, healthcare, Hospitalization, Human, Humans, immunosuppressive treatment, Infant, Interpersonal Communication, investment, Loura D, Medical Education, Palliative Therapy, Parent, Parents, Patient Care, Polypharmacy, population dynamics, Preschool Child, Prevalence, psychological adjustment, Psychology, Quality Of Life, Questionnaire, Romeiro J, Scoping review, September List 2024, Sleep Quality, Terminal Care, Therapy, Transitional Care, VULNERABILITY, Young Adult
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
Scoping Review on Transitions in the Context of Pediatric Palliative Care
Tags: 2024, Adolescent, anxiety, Bergeron F, Bogossian A, Bonanno M, Bonenfant F, Champagne E, Chenard J, Child, Chronic Disease, clinical observation, environmental change, Fortin G, Health Care Policy, Human, Journal of Palliative Medicine, Olivier-D'Avignon M, Palliative Therapy, Preferred Reporting Items for Systematic Reviews and Meta-Analyses, Quality Of Life, Review, Roberge V, Scoping review, September List 2024, Simard C, Systematic Review, Therapy, Ummel D
Impact of Subspecialty Pediatric Palliative Care on Children with Heart Disease; A Systematic Review and Meta-analysis
Tags: 2024, Advance Care Planning, August List 2024, Bailey V, Child, Cinahl, Delgado-Corcoran C, heart disease, Human, Lipsitz S, meta analysis, Moynihan KM, outcome assessment, Palliative Therapy, Parental Stress, patient coding, Pediatric Cardiology, Preferred Reporting Items for Systematic Reviews and Meta-Analyses, Quality Of Life, Resuscitation, Review, Rosenberg AR, Rotman C, Songer K, Systematic Review, Ting J, Web of Science
End-of-Life Care for Newborn Infants: A Multicenter Real-Life Prospective Study
Tags: 2024, Article, August List 2024, Avila AS, Cardigni G, Congenital Malformation, Contrera PJ, Cross-sectional Study, Delivery Room, developed country, Diagnosis, Drug Withdrawal, Female, Fernandez AL, Fernandez Riera P, Human, Infant, Male, Mariani GL, middle income country, Multicenter Study, Neonatal Intensive Care Unit, Neonatology, Newborn, Newborn Death, Newborn Intensive Care, Perinatal Death, Portela MC, Prematurity, Prospective Study, Quality Of Life, Terminal Care, Urquizu Handal MI, Vain NE, Virasoro MDLA
Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit
Tags: 2024, Advance Care Planning, American Journal of Perinatology, Article, August List 2024, Caregiver, Controlled Study, Cost Effectiveness Analysis, Cross-sectional Study, Cummings C, DeCourcey DD, Emotional Stress, Female, Follow Up, Health Care Cost, Hospital Anxiety and Depression Scale, Human, Infant, Intensive Care Unit, Lin M, Major Clinical Study, Neonatal Intensive Care Unit, Palliative Therapy, Patient Preference, psychiatrist, Quality Of Life, Questionnaire, Resuscitation, Sayeed S, Social Support, Terminal Care, Vitcov G, Williams D, Wolfe J
An Evolutionary Concept Analysis of Pediatric Hospice and Palliative
Tags: 2024, Acute Disease, August List 2024, Chronic Disease, Communication, Concept analysis, family support, Hospice Nursing, Journal of Hospice and Palliative Care, Jung HL, Kyung MC, Multidisciplinary Care Team, Nursing Knowledge, nursing theory, Pain Management, Palliative Care, Pediatric Nursing, Quality Of Life, Soon YL, South Korea, Spiritual Care, Spirituality, Support Psychosocial, Terminal Care, Theory Construction