Browse Items (195 total)
- Tags: Longitudinal Studies
Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…
Tags: 2016, Adolescent, Archives of Disease in Childhood, Beringer A, Child, Child Preschool, Disabled Children/psychology, Family, Female, Fletcher M, Harris N, Hospice, Humans, Infant, Internet, July 2016 List, Longitudinal Studies, Male, Outcome, Palliative Care, Parents, Parents/psychology, Power (psychology), Quality Of Life, Quality Of Life/psychology, Social Support, Surveys And Questionnaires, United Kingdom, Young Adult
“have No Regrets:” Parents’ Experiences And Developmental Tasks In Pregnancy With A Lethal Fetal Diagnosis.
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological…
Tags: 2016, Adult, Choice Behavior, Côté-Arsenault D, Denney-Koelsch E, Developmental Task, Emotions, Female, Fetal Diseases/diagnosis, Fetal Diseases/mortality, Humans, Infant, Lethal Fetal Diagnosis, Longitudinal, Longitudinal Studies, Male, March 2016 List, Middle Aged, Needs Assessment, Palliative Care, Parents/psychology, Perinatal Care, Perinatal Palliative Care, Phenomenology, Pregnancy, Prenatal Diagnosis, Prenatal Diagnosis/psychology, Qualitative Research, Social science & medicine, Usa, Young Adult
Parental Decision-making On
Utilisation Of Out-of- Home Respite In Children’s Palliative Care: Findings Of
Qualitative Case Study Research - A Proposed New Model.
Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the…
Tags: 2016, Adolescent, Adult, Child, Child Preschool, Child: Care, Health and Development, Children, Connaire K, Decision Making, Female, Humans, Ireland/epidemiology, Ling J, Longitudinal Studies, Male, May 2016 List, McCarron M, Palliative Care, Palliative Care/psychology, Parents, Parents/psychology, Payne S, Pediatrics, Qualitative Research, Quality Of Health Care, Respite, Respite Care, Social Support, Terminally Ill/psychology
A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer…
Tags: 2014, Adolescent, Adult, Advance Care Planning, Advance Care Planning/statistics & Numerical Data, Advance Directive, Advance Directives/psychology, Advance Directives/statistics & Numerical Data, African-american, Anxiety/complications, Anxiety/psychology, Cancer, Communication, Decision-making, Depression/complications, Depression/psychology, End Of Life, Family, Family Intervention, Feasibility Studies, Female, Follow-up Studies, Humans, Journal of Adolescent Health, July 2016 List, Longitudinal Studies, M.E. Lyon, Male, Neoplasms/complications, Neoplasms/psychology, Patient Satisfaction/statistics & Numerical Data, Pediatric Palliative Care, Quality Of Life/psychology, Spirituality, Surveys And Questionnaires, United States, Wang J, Young Adult
Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study
Tags: 2015, Adolescent, Chen K, Child, Dussel V, Feasibility Studies, Female, Feudtner C, Geyer JR, Humans, Journal Of Pain & Symptom Management, Kang TI, Longitudinal Studies, Male, Neoplasms/th [therapy], Oncology 2017 List, Orellana L, Palliative Care, Palliative Care/mt [methods], Patient Dropouts, Patient Selection, Pilot Projects, Preschool, Soto N, Terminal Care, Ullrich C, Wolfe J
Geographic variation in California pediatric hospice care for children and adolescents: 2007-2010
Tags: 2018, Adolescent, Adolescents, American Journal of Hospice & Palliative Medicine, California, Child, Children, Chronic Illness, Complex Chronic Conditions, Edwards SL, February 2018 List, geographic variation, Hospice, Hospice Care, Hospices, Lindley Lisa C, Longitudinal Studies, Los Angeles, Medicaid, Only Child, Pediatrics, Regional Differences
Family functioning: Impact on siblings.
Tags: 1999, Attitude to death -- In infancy & childhood, Bereavement -- in infancy & childhood, Bereavement In Children, Book/Book Section, Brothers and sisters -- Death -- Psychological aspects, Children and death, Davies B, Grief in children, Longitudinal Studies, Shadows In The Sun: The Experiences Of Sibling Bereavement In Childhood., Sibling Relations -- in infancy & childhood
The Measurement of Symptoms in Children with Cancer
Tags: 2000, Adolescent, Backlog, Byrnes ME, Cancer, Child, Children, Collins J J, Cough/etiology, Dunkel IJ, Eating Disorders/etiology, Fatigue/etiology, Female, Humans, Journal Article, Journal of Pain and Symptom Management, Lapin J, Longitudinal Studies, Male, malignancy, Nadel Traci, Nausea/etiology, Neoplasms/complications/physiopathology/psychology, Oncology at EOL, Pain/etiology, Pediatrics, Polyak Tanya, Portenoy RK, Rapkin B, Sleep Stages, symptom distress, Symptoms, Thaler H
Symptoms and Suffering at the End of Life in Children with Cancer
Tags: 2000, Anorexia/etiology/therapy, Backlog, Boston, Child, Children's Hospital (Boston), Clodronate, Constipation/etiology/therapy, Dana-Farber Cancer Institute (Boston), Death and Euthanasia, Diarrhea/etiology/therapy, Dyspnea/etiology/therapy, Ellenbogen JM, Emanuel EJ, Empirical Approach, Fatigue/etiology/therapy, Grier Holcombe E, Health Care Surveys, home care services, Humans, Journal Article, Klar Neil, Levin SB, Logistic Models, Longitudinal Studies, Neoplasms/complications/therapy, New England Journal Of Medicine, Non-U.S. Gov't, Oncology at EOL, P.H.S., Pain/etiology/therapy, Palliative Care/standards/statistics & Numerical Data, Parents, Physicians, Professional Patient Relationship, Psychological, Quality Of Health Care, Quality Of Life, Questionnaires, Research Support, Salem-Schatz S, Stress, Terminal Care, U.S. Gov't, Weeks Jane C, Withholding Treatment, Wolfe J
Equivalence reliability of the functional independence measure for children (WeeFIM) administration methods.
Tags: 1997, Activities of Daily Living, Backlog, Braun SL, Cerebral Palsy/rehabilitation, Child, Developmental Disabilities/rehabilitation, Disability Evaluation, Down Syndrome/rehabilitation, Female, Humans, Infant, Interviews As Topic, Journal Article, Lane SJ, Longitudinal Studies, Male, Nochajski S, Observer Variation, Ottenbacher KJ, Preschool, Psychometrics, Reproducibility of Results, Sperle PA, The American Journal Of Occupational Therapy.: Official Publication Of The American Occupational Therapy Association
Palliative care for children.
Tags: 2000, American Academy of Pediatrics, American Academy of Pediatrics Committee on Hospital Care, Backlog, Child, Committee on Bioethics, Death and Euthanasia, Humans, Infant, Journal Article, Longitudinal Studies, Palliative Care, Pediatrics, Practice Guidelines, Preschool, Terminal Care, United States
Paediatric palliative care: a lack of research-based evidence.
Posttraumatic stress and general distress among parents of children surviving a brain tumor.
Focus group interview with parents of children with medically complex needs: an intimate look at their perceptions and feelings.
Tags: 1991, Backlog, Children's Health Care, Counseling, Diehl SF, Family Health, Female, Florida, Health Services Needs And Demand, Home Nursing/psychology, Humans, Interviews, Journal Article, Longitudinal Studies, Male, Moffitt KA, Parents/psychology, Patient Care Planning/standards, Respite Care, Self-Help Groups, Wade SM
Nova Scotia Niemann-Pick disease (type D): Clinical study of 20 cases.
Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain
Tags: 1997, Backlog, Bruera E, Cohen SR, Humans, Journal Article, Longitudinal Studies, Mental Health, Mental Status Schedule, Mount BM, Multicenter Studies as Topic, Neoplasms/psychology, Palliative Care, Palliative Medicine, Provost M, Quality Of Life, Questionnaires, Reproducibility of Results, Rowe J, Sensitivity and Specificity, Tong K
WeeFIM: Normative sample of an instrument for tracking functional independence in children.
Tags: 1994, Adaptation, Age Factors, Backlog, Braun S, Child, Clinical Pediatrics, Cross-sectional Studies, DiGaudio K, Disability Evaluation, Duffy LC, Female, Granger CV, Humans, Infant, Journal Article, LaForest S, Longitudinal Studies, Male, Msall ME, Neuropsychological Tests, Preschool, Psychological, Self Care
The Functional Independence Measure for Children (WeeFIM). Conceptual basis and pilot use in children with developmental disabilities.
Tags: 1994, Adaptation, Adolescent, Backlog, Campbell J, Catanzaro NL, Child, Clinical Pediatrics, Developmental Disabilities/diagnosis, DiGaudio K, Disability Evaluation, Duffy LC, Female, Humans, Infant, Journal Article, LaForest S, Longitudinal Studies, Male, Msall ME, Neuropsychological Tests, Pilot Projects, Preschool, Psychological, Rogers BT, Wilczenski F
Natural history of trisomy 13
Tags: 1994, Adult, Archives of Disease in Childhood, Backlog, Burn J, Chromosomes, Congenital/diagnosis/genetics/mortality, England/epidemiology, Female, Fetal Diseases/diagnosis, Heart Defects, Human, Humans, Hunter S, Incidence, Infant, Journal Article, Longitudinal Studies, Male, Neural Tube Defects/diagnosis/genetics/mortality, Newborn, Pair 13, Pregnancy, Prenatal Diagnosis, Syndrome, Trisomy, Wright MJ, Wyllie JP
Late onset globoid cell leukodystrophy (Krabbe's disease)--Swedish case with 15 years of follow-up.
Tags: 1995, Acta Paediatrica, Adult, Age of Onset, Arvidsson J, Backlog, Epilepsy/etiology, Follow-up Studies, Galactosylceramidase/blood, Globoid Cell/complications/enzymology/radiography, Hagberg B, Humans, Journal Article, Leukodystrophy, Longitudinal Studies, Male, Mansson JE, Musculoskeletal Equilibrium, Svennerholm L, Sweden, Tomography, Vision Disorders/etiology, X-Ray Computed
Sleep problems in children with Sanfilippo syndrome.
Tags: 1996, Backlog, Bax M, Child, Colville GA, Developmental Medicine and Child Neurology, Female, Humans, Journal Article, Longitudinal Studies, Male, Mucopolysaccharidosis III/classification, Mucopolysaccharidosis III/complications, Preschool, Questionnaires, Sleep Disorders/etiology, Sleep Disorders/therapy, Time Factors, Watters JP, Yule W
Cornerstone care for families of children with life-threatening illness.
Tags: 1991, Adaptation, Backlog, Baum JD, Brain Diseases/psychology/therapy, Child, Continuity Of Patient Care, Developmental Medicine and Child Neurology, Family/psychology, Forrest GC, Grief, Home Nursing/psychology, Hospices, Humans, Journal Article, Longitudinal Studies, Neuromuscular Diseases/psychology/therapy, Patient Care Team, Professional-family Relations, Psychological, Public Assistance, Sick Role, Social Support, Stein A, Terminal Care/psychology, Woolley H
End-of-life decision-making and satisfaction with care: parental perspectives.
Health status of bereaved parents
Tags: 1996, Adolescent, Adult, Backlog, Bereavement, Birenbaum LK, Case-Control Studies, Child, Death, Female, Health Status, Humans, Infant, Journal Article, Longitudinal Studies, Male, Neoplasms/psychology, Nursing Research, Parent caregivers, Parents/psychology, Phillips DS, Preschool, Questionnaires, Stewart BJ, Time Factors
Progressive sensorineural hearing loss in children with mitochondrial encephalomyopathies
Tags: 2001, Acoustic Impedance Tests, Acoustic/ph [Physiology], Adolescent, Adult, Audiometry, Auditory, Backlog, Brain Stem/ph [Physiology], Child, Evoked Potentials, Female, Friedreich Ataxia/di [Diagnosis], Friedreich Ataxia/pp [Physiopathology], Hearing Loss, Humans, IM, Journal Article, Kearns-Sayer Syndrome/di [Diagnosis], Kearns-Sayer Syndrome/pp [Physiopathology], Laryngoscope, Longitudinal Studies, Male, MELAS Syndrome/di [Diagnosis], MELAS Syndrome/pp [Physiopathology], Mitochondrial Encephalomyopathies/di [Diagnosis], Mitochondrial Encephalomyopathies/pp [Physiopathology], Otoacoustic Emissions, Preschool, Pure-Tone, Reflex, Sensorineural/di [Diagnosis], Sensorineural/pp [Physiopathology], Speech, Spontaneous/ph [Physiology], Wilichowski E, Zwirner P
Families caring for chronically ill children with tuberous sclerosis complex.
Tags: 1996, Backlog, Caregivers, Caregivers-Psychological Aspects, Chronically Ill Children-Home Care, Family & Community Health, Journal Article, Longitudinal Studies, Parker M, Pediatric Neurology, Pediatric Neurology-Care and Treatment, Stress (Psychology), Stress (Psychology)-Care and Treatment, Tuberous Sclerosis, Tuberous Sclerosis-Psychological Aspects
Predictors of distress in parents of children with cancer: a prospective study.
Tags: 2000, Adaptation, Adolescent, Backlog, Child, Cost Of Illness, Depression/diagnosis/drug therapy/psychology, Female, Humans, Internal-External Control, Journal Article, Journal of Pediatric Psychology, Longitudinal Studies, Male, Neoplasms, Non-U.S. Gov't, Parent-child Relations, Parents/psychology, Prospective Studies, Psychological, Psychological/psychology, Questionnaires, Research Support, Sloper P, Social Adjustment, Social Support, Stress
Factors influencing family participation in a longitudinal study: comparison of pediatric and healthy samples.
Tags: 1997, Analysis of Variance, Backlog, Case-Control Studies, Chi-Square Distribution, Congenital/psychology, Cystic Fibrosis/psychology, Family Health, Goldberg S, Heart Defects, Humans, Infant, Janus M, Journal Article, Journal of Pediatric Psychology, Longitudinal Studies, Parents/psychology, Patient Dropouts/statistics & numerical data, Patient Participation/statistics & numerical data, Regression Analysis, Research/statistics & numerical data, Severity Of Illness Index
Meaning in caregiving and its contribution to caregiver well-being.
Tags: 1997, 80 And Over, Adult, Aged, Backlog, Caregivers/psychology, Child, Comparative Study, Disabled Persons, Education, Emotions, Female, Frail Elderly, Gerontologist, Home Nursing, Humans, Income, Interviews, Journal Article, Longitudinal Studies, Male, Middle Aged, Noonan AE, P.H.S., Regression Analysis, Research, Research Support, Spouses, Tennstedt SL, Time Factors, U.S. Gov't
The positive impact of children with an intellectual disability on the family.
Measuring parental grief after childhood cancer: potential use of the SCL-90R
Tags: 1997, Adolescent, Adult, Backlog, Bereavement, Child, Death studies, Evaluation Studies, Female, Gilliss CL, Humans, Infant, Journal Article, Longitudinal Studies, Male, Martinson IM, Middle Aged, Moore IM, Neoplasms, Newborn, Parent caregivers, Parents/psychology, Preschool, Psychological Tests, Questionnaires
Spiritual aspects of loss at the time of a partner's death from AIDS
Hildegard Peplau meets family systems nursing: Innovation in theory-based practice.
Predictors of burden in spouse caregivers of individuals with Alzheimer's disease
Tags: 1991, Activities of Daily Living/psychology, Adaptation, Aged, Alzheimer Disease/psychology/therapy, Anger, Anxiety/psychology, Backlog, Depression/psychology, Female, Follow-up Studies, Hostility, Humans, Journal Article, Longitudinal Studies, Maiuro RD, Male, Marriage/psychology, Mental Status Schedule/statistics & numerical data, P.H.S., Personal Satisfaction, Personality Assessment/statistics & Psychometrics, Psychological, Psychology And Aging, Research Support, Russo J, Sick Role, Teri L, U.S. Gov't, Vitaliano PP, Young HM
Vulnerability and resilience to combat exposure: can stress have lifelong effects?
Tags: 1994, 80 And Over, Adaptation, Adult, Aged, Aldwin CM, Backlog, Combat Disorders/diagnosis/psychology, Defense Mechanisms, Europe, Follow-up Studies, Humans, Journal Article, Korea, Levenson MR, Longitudinal Studies, Male, Mathematical Computing, Middle Aged, Non-P.H.S., P.H.S., Personality Development, Personality Inventory/statistics & numerical data, Psychological, Psychological/complications, Psychology And Aging, Research Support, Software, Spiro A, Stress, U.S. Gov't, Veterans/psychology