Family-Centered Assessment and Function for Children With Chronic Mechanical Respiratory Support
Tài liệu tham khảo
Berry, 2010, Patient characteristics associated with in-hospital mortality in children following tracheotomy, Archives of Disease in Childhood, 95, 703, 10.1136/adc.2009.180836
Best, 2001, Parental distress during pediatric leukemia and posttraumatic stress symptoms (PTSS) after treatment ends, Journal of Pediatric Psychology, 26, 299, 10.1093/jpepsy/26.5.299
Blucker, 2011, Psychological adjustment of family caregivers of children who have severe neurodisabilities that require chronic respiratory management, Families, Systems & Health, 29, 215, 10.1037/a0025146
Bodenheimer, 2002, Improving primary care for patients with chronic illness, Journal of the American Medical Association, 288, 1775, 10.1001/jama.288.14.1775
Caregiver Action Network. (2012). Comparing survey stats and understanding why they differ. Retrieved from http://caregiveraction.org/compare-survey-stats/
Carnevale, 2006, Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home, Pediatrics, 117, e48, 10.1542/peds.2005-0789
Cronbach, 1951, Coefficient alpha and the internal structure of tests, Psychometrika, 16, 297, 10.1007/BF02310555
Dybwik, 2011, “Fighting the system”: Families caring for ventilator-dependent children and adults with complex health care needs at home, BMC Health Services Research, 11, 156, 10.1186/1472-6963-11-156
Fiks, 2012, Shared decision-making and health care expenditures among children with special health care needs, Pediatrics, 129, 99, 10.1542/peds.2011-1352
George, S. (2010). Challenges for pediatric long-term ventilation. Retrieved from http://respiratory-care-sleep-medicine.advanceweb.com/Features/Articles/Challenges-for-Pediatric-Long-Term-Ventilation.aspx
Gowans, 2007, The population prevalence of children receiving invasive home ventilation in Utah, Pediatric Pulmonology, 42, 231, 10.1002/ppul.20558
Graham, 2007, Chronic ventilator need in the community: A 2005 pediatric census of Massachusetts, Pediatrics, 119, e1280, 10.1542/peds.2006-2471
Graham, 2008, Included but isolated: Early intervention programmes provision for children and families with chronic respiratory support needs, Child: Care, Health, and Development, 34, 373, 10.1111/j.1365-2214.2008.00823.x
Graham, 2005, Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities, Journal of Developmental and Behavioral Pediatrics, 26, 361, 10.1097/00004703-200510000-00004
Guralnick, 2004, Family investments in response to the developmental challenges of young children with disabilities, 119
Institute of Medicine, 2001
Janicke, 2001, Children’s health care use: A prospective investigation of factors related to care-seeking, Medical Care, 39, 990, 10.1097/00005650-200109000-00009
Lindahl, 2011, Family members’ experiences of everyday life when a child is dependent on a ventilator: A metasynthesis study, Journal of Family Nursing, 17, 241, 10.1177/1074840711405392
McPherson, 2002, Noncompliance with medical follow-up after pediatric intensive care, Pediatrics, 109, e94, 10.1542/peds.109.6.e94
Noyes, 2006, Health and quality of life of ventilator-dependent children, Journal of Advanced Nursing, 56, 392, 10.1111/j.1365-2648.2006.04014.x
Noyes, 2007, Comparison of ventilator-dependent child reports of health-related quality of life with parent reports and normative populations, Journal of Advanced Nursing, 58, 1, 10.1111/j.1365-2648.2006.04191.x
Odetola, 2010, Comorbid illnesses among critically ill hospitalized children: Impact on hospital resource use and mortality, 1997-2006, Pediatric Critical Care Medicine, 11, 457
Panepinto, 2010, The effect of parental mental health on proxy reports of health-related quality of life in children with sickle cell disease, Pediatric Blood & Cancer, 55, 714, 10.1002/pbc.22651
Parsons, 1999, Health-related quality of life in pediatric bone marrow transplant survivors: According to whom?, International Journal of Cancer Supplement, 12, 46, 10.1002/(SICI)1097-0215(1999)83:12+<46::AID-IJC9>3.0.CO;2-C
Parsons, 2006, Maternal perspectives on children’s health-related quality of life during the first year after pediatric hematopoietic stem cell transplant, Journal of Pediatric Psychology, 31, 1100, 10.1093/jpepsy/jsj078
Parsons, 2005, Preliminary psychometric evaluation of the Child Health Ratings Inventory (CHRIs) and Disease-Specific Impairment Inventory-Hematopoietic Stem Cell Transplantation (DSII-HSCT) in parents and children, Quality of Life Research, 14, 1613, 10.1007/s11136-005-1004-2
Rodday, 2013, Measuring global health-related quality of life in children undergoing hematopoietic stem cell transplant: A longitudinal study, Health and Quality of Life Outcomes, 11, 26, 10.1186/1477-7525-11-26
Seid, 2004, Health-related quality of life as a predictor of pediatric [Research Support, Non-U.S. Gov't], Health and Quality of Life Outcomes, 2, 48, 10.1186/1477-7525-2-48
Serwint, 2005, Deaths of pediatric patients: Relevance to their medical home, an urban primary care clinic, Pediatrics, 115, 57, 10.1542/peds.2004-0445
Steele, 2000, Trajectory of certain death at an unknown time: Children with neurodegenerative life-threatening illnesses, Canadian Journal of Nursing Research, 32, 49
Toly, 2012, Families with children who are technology dependent: Normalization and family functioning, Western Journal of Nursing Research, 34, 52, 10.1177/0193945910389623
U.S. Department of Health and Human Services, Maternal and Child Health Bureau, 2004
Wagner, 2001, Improving chronic illness care: Translating evidence into action, Health Affairs, 20, 64, 10.1377/hlthaff.20.6.64
Ware, 1993
Winkler, 2006, Technology dependence in home care: Impact on patients and their family caregivers, Nutrition in Clinical Practice, 21, 544, 10.1177/0115426506021006544
Yeh, 2005, Evaluating quality of life in children with cancer using children’s self-reports and parent-proxy reports, Nursing Research, 54, 354, 10.1097/00006199-200509000-00010
Zorc, 2003, Scheduled follow-up after a pediatric emergency department visit for asthma: A randomized trial, Pediatrics, 111, 495, 10.1542/peds.111.3.495