Browse Items (19 total)
- Tags: Cystic Fibrosis
Coping with cystic fibrosis: An analysis from the sibling's point of view
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
Facilitators and Barriers to Empowerment in Children and Young People with Cystic Fibrosis: A Meta-Synthesis of the Qualitative Literature
Palliative Care in Pediatric Pulmonology
Tags: 2021, Baumann T, Benitez EA, Bronchopulmonary Dysplasia, Children, Communication, Cystic Fibrosis, Das S, Gazzaneo MC, Jarrell JA, lung transplant, Nakashima-Paniagua Y, Neuromuscular Disease, November 2021 List, Palliative Care, Pediatric Pulmonology, primary palliation, psychosocial support, pulmonary hypertension, Quality Of Life, Villafranco N
Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation
Tags: 2019, Adolescence, Adolescent, Adult, Albrecht U V, Anthropometry, Article, Breathing, Child, chronic lung disease, Clinical Article, Controlled Study, Cystic Fibrosis, Disability, Dittrich A M, Dopfer C, February 2020 List, Female, Fuge J, Hansen G, Human, JMIR mHealth and uHealth, Junge S, Life Expectancy, life satisfaction, lung function, Male, mobile application, mobile phone, Nolte H, Pieper K, Quality Of Life, Questionnaire, responsibility, Ringshausen F C, Rudolf I, Sauer-Heilborn A, Self Care, Tummler B, von Jan U, Young Adult
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
Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis
Tags: 2019, Altstein L L, anxiety, Bach KT, chronic symptom burden, Cystic Fibrosis, Depression, Fracchia MS, Friedman D, Georgiopoulos AM, Islam S, Lapey A, Linnemann RW, May 2019 List, Moskowitz SM, Neuringer I, Pediatric Pulmonology, Primary Palliative Care, Quality Of Life, Sicilian L, St John A, Yonker LM
Children's experiences of cystic fibrosis: a systematic review of qualitative studies
Tags: 2014, Activities of Daily Living, Adaptation, Adolescent, Backlog, Child, Cost Of Illness, Craig JC, Cystic Fibrosis, Defense Mechanisms, Disability Evaluation, Fitzgerald D, Hanson CS, Health Services Needs And Demand, Hope, Humans, Internal-External Control, Jamieson N, Journal Article, Pediatrics, Power (psychology), Preschool, Prognosis, Psychological, Qualitative Research, Quality Of Life, Resilience, Self Care, Sick Role, Singh-Grewal D, Social Adjustment, Social Isolation, Social Support, Tong A, Young Adult
Life at the interface: adults with "pediatric" disorders of the nervous system
Age limits and transition of health care in pediatric emergency medicine
Tags: 2007, Adolescent, Adolescent Transitions, Adult, Age Factors, Backlog, Bryce L, Child, Cystic Fibrosis, Data Collection, Dobson JV, Emergency Medicine, Emergency Service, Female, General/statistics & numerical data, Glaeser PW, Hospital/statistics & numerical data, Hospitals, Humans, Journal Article, Losek JD, Male, Organizational Policy, Pediatric Emergency Care, Pediatric/statistics & Numerical Data, Pediatrics, Pregnancy, Pregnancy in Adolescence, United States
Problematic variation in local institutional review of a multicenter genetic epidemiology study
Tags: 2003, Backlog, Beaty T, Beck S, Biomedical and Behavioral Research, Cutting G, Cystic Fibrosis, Empirical Approach, Epidemiologic Measurements, Epidemiologic Research Design, Epidemiology, Ethics Committees, Genetic Research/ethics, Genetics and Reproduction, Hamosh A, Hoover-Fong JE, Humans, JAMA, Journal Article, McWilliams R, Molecular/ethics/standards, Multi-site Ethics, Multicenter Studies as Topic/ethics/standards, Research/ethics/standards, United States
Impact of a chronic illness in childhood: siblings' perceptions
Tags: 1996, Adolescent, Attitude To Health, Backlog, Child, Chronic Disease, Cystic Fibrosis, Derouin D, Female, Humans, Issues In Comprehensive Pediatric Nursing, Jessee PO, Journal Article, Male, Nursing Methodology Research, Pediatric Nursing, Questionnaires, sibling bereavement, Sibling Relations
Early involvement of palliative care in cystic fibrosis in inpatient setting: A quality improvement initiative
Advanced care planning in cystic fibrosis
Tags: 2017, 7782-44-7 (oxygen), Altstein L, Bach K, chest tube, Child, Clinical Article, Comfort, Cystic Fibrosis, durable power of attorney, Female, Forced Expiratory Volume, Friedman D, Georgiopoulos A, hemoptysis, Hospitalization, Human, Islam S, January 2018 List, Lifespan, Linnemann RW, living will, Male, Moskowitz SM, Outpatient, oxygen, Palliative Therapy, Pediatric Pulmonology, Pilot Study, pneumothorax, Practice Guideline, School Child, St John A, thinking, Yonker LM
Attitudes on pain and opioid prescription practices in cystic fibrosis centers
Tags: 2017, 53663-61-9 (opiate), 8002-76-4 (opiate), 8008-60-4 (opiate), Adult, Analgesia, anxiety, Child, Chronic Pain, cyst, Cystic Fibrosis, drug combination, Female, Hollatz T, Human, January 2018 List, Laxova A, Life Expectancy, Male, Meyer KC, Mood, Mukadam Z, Nurse, Opiate, opiate addiction, Palliative Therapy, Pediatric Pulmonology, prescription, Prevalence, Quality Of Life, Questionnaire, sinus headache, thorax wall, Yang Y
How holistic nursing can enhance the quality of life of children with cystic fibrosis
Tags: 2016, Adolescent, August 2017 List, Child Health, Cystic Fibrosis, Cystic Fibrosis/ Nursing/psychology, Family/psychology, Female, Holistic Nursing/ Methods, Humans, Hunt J, life-limiting illness, Nursing Children and Young People, Paediatrics, Quality Of Life, Respiratory System, Siblings/psychology, Tointon K, Well-being
'I Have to Live with the Decisions I Make': Laying a Foundation for Decision Making for Children with Life-limiting Conditions and Life-Threatening Illnesses
Development And Evaluation Of A Palliative Care Curriculum For Cystic Fibrosis Healthcare Providers.
Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for…
Tags:
2016, Altstein
LL, Attitude Of Health Personnel, Buxton D, Curriculum, Cystic Fibrosis, Cystic Fibrosis/psychology, Cystic Fibrosis/therapy, Disease Management, Education, End-of-life Care, Female, Friedman D, Georgiopoulos AM, Health Personnel/education, Health Personnel/psychology, Humans, Journal of Cystic Fibrosis, Linnemann RW, Male, March 2016 List, Middle Aged, Needs Assessment, O’Malley PJ, Palliative Care, Palliative Care/methods, Palliative Care/psychology, Quality Of Life, Surveys And Questionnaires, Terminal Care/methods, Terminal Care/psychology, United States
Life Transitions Of Adolescents And Young Adults With Life-limiting Conditions
A systematic review was conducted to appraise and classify evidence related to the life transitions of adolescents and young adults with life-limiting conditions.
Methods:
The databases searched were MEDLINE, CINAHL, PsycINFO, CancerLit, and…
Tags: 2016, Adaptation Psychological, Adolescent, Adolescent Development, Adolescents, Adult, Brain Neoplasms, Child, Cystic Fibrosis, December 2016 List, Disease Progression, Emotions, Family, Health Status, Humans, International Journal of Palliative Nursing, Jindal-Snape, Johnston, Life Transitions, Life-limiting Conditions, Mental Health, Muscular Dystrophy Duchenne, Neurodegenerative Diseases, Pringle J, Terminally Ill, Young Adult, Young Adults