scholarly journals Hearing the patient voice: Using video intervention/prevention assessment to understand teens with cystic fibrosis

2014 ◽  
Vol 1 (2) ◽  
pp. 104-116 ◽  
Author(s):  
Susan Horky ◽  
Laura E. Sherman ◽  
Julie Polvinen ◽  
Michael Rich
2012 ◽  
pp. 897-913
Author(s):  
Richard Chalfen ◽  
Michael Rich

The chapter presents findings from recent studies that feature a model of doctor-patient collaboration called Video Intervention/Prevention Assessment (VIA), a research methodology that engages patient-participants in sharing their life stories on video, communicating their concerns and teaching their doctors what it means to live with a chronic illness. Patients are collaborators in creating a comprehensive understanding of illness that expands the medical community’s definition of disease. This chapter focuses on visual narratives made by young patients with Cystic Fibrosis and Spina Bifida as they experience their transitions from pediatric to adult-oriented medicine care. Collaboration in research facilitates more effective ownership of and accountability for their illness, facilitating adherence to treatment plans and improved quality of life. Our chapter concludes with an evaluation of the pros and cons of VIA as a collaborative information methodology.


Author(s):  
Richard Chalfen ◽  
Michael Rich

The chapter presents findings from recent studies that feature a model of doctor-patient collaboration called Video Intervention/Prevention Assessment (VIA), a research methodology that engages patient-participants in sharing their life stories on video, communicating their concerns and teaching their doctors what it means to live with a chronic illness. Patients are collaborators in creating a comprehensive understanding of illness that expands the medical community’s definition of disease. This chapter focuses on visual narratives made by young patients with Cystic Fibrosis and Spina Bifida as they experience their transitions from pediatric to adult-oriented medicine care. Collaboration in research facilitates more effective ownership of and accountability for their illness, facilitating adherence to treatment plans and improved quality of life. Our chapter concludes with an evaluation of the pros and cons of VIA as a collaborative information methodology.


JAMA ◽  
1966 ◽  
Vol 195 (12) ◽  
pp. 993-1000 ◽  
Author(s):  
R. J. Grand
Keyword(s):  

Author(s):  
J. V. Briggman ◽  
J. Bigelow ◽  
H. Bank ◽  
S. S. Spicer

The prevalence of strands shown by freeze-fracture in the zonula occludens of junctional complexes is thought to correspond closely with the transepi-thelial electrical resistance and with the tightness of the junction and its obstruction to paracellular flow.1 The complexity of the network of junc¬tional complex strands does not appear invariably related to the degree of tightness of the junction, however, as rabbit ileal junctions have a complex network of strands and are permeable to lanthanum. In human eccrine sweat glands the extent of paracellular relative to transcellular flow remains unknown, both for secretion of the isotonic precursor fluid by the coil and for resorption of a hypertonic solution by the duct. The studies reported here undertook, therefore, to determine with the freeze-fracture technique the complexity of the network of ridges in the junctional complexes between cells in the secretory coil and the sweat ducts. Glands from a patient with cystic fibrosis were also examined because an alteration in junctional strands could underlie the decreased Na+ resorption by sweat ducts in this disease. Freeze-fracture replicas were prepared by standard procedures on isolated coil and duct segments of human sweat glands. Junctional complexes between clear cells, between dark cells and between clear and dark cells on the main lumen, and between clear cells on intercellular canaliculi of the coil con¬tained abundant anastomosing closely spaced strands averaging 6.4 + 0.7 (mean + SE) and 9.0 +0.5 (Fig. 1) per complex, respectively. Thus, the junctions in the intercellular canaliculi of the coil appeared comparable in complexity to those of tight epithlia. Occasional junctions exhibited, in addition, 2 to 5 widely spaced anastomosing strands in a very close network basal to the compact network. The fewer junctional complexes observed thus far between the superficial duct cells consisted on the average of 6 strands arranged in a close network and 1 to 4 underlying strands that lay widely separated from one another (Fig. 2). The duct epitelium would, thus, be judged slightly more "leaky" than the coil. Infrequent junctional complexes observed to date in the secretory coil segment of a cystic fibrosis specimen disclosed rela¬tively few closely crowded strands.


1999 ◽  
Vol 37 (4) ◽  
pp. 291-293 ◽  
Author(s):  
B. Cimon ◽  
J. Carrere ◽  
J. P. Chazalette ◽  
J. F. Vinatier ◽  
D. Chabasse ◽  
...  

2001 ◽  
Vol 120 (5) ◽  
pp. A137-A137
Author(s):  
D CHILDS ◽  
D CROMBIE ◽  
V PRATHA ◽  
Z SELLERS ◽  
D HOGAN ◽  
...  

2005 ◽  
Vol 39 (8) ◽  
pp. 43
Author(s):  
DAMIAN MCNAMARA
Keyword(s):  

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