A must read for all parents with a child with CF as well as the patients themselves is the book by Atul Gwande, "Better." He discusses a documented study that compares the average life span for patients treated with CF at the major treatment centers around our country and the difference is a bit shocking. Now Gwande is a very diplomatic guy so he focuses on why the one hospital in Minnesota is doing such an incredible job (average life span: 47). Also, he refers to a terrific new vest that can be worn by CF patients that takes care of the chest treatment--which makes it ever so much easier for both parent and child and MUCH more likely that treatments are not skipped. What's amazing is the average CF patient at this hospital (can't recall name--not Mayo Clinic however) is that their lung capacity through their 20's is often better than that of so-called normal folks. This writer is an MD and also wrote a book titled "Complications." He's absolutely one of the best writers of the state of medical care I have ever come across.
Joan Joan Warmbold Boggs [EMAIL PROTECTED] > Christopher DDid a little searching, and found that visualization > techniques are being used to encourage children with cystic fibrosis, and > their parents, to adhere to the chest physiotherapy required (they're > taught to visualize mucous accumulating). > > Problems and solutions: Accounts by parents and children of adhering to > chest physiotherapy for cystic fibrosis. > Authors: > Williams, Brian1 [EMAIL PROTECTED] > Mukhopadhyay, Somnath2 > Dowell, Jon1 > Coyle, Joanne1 > Source: > Disability & Rehabilitation; Jul2007, Vol. 29 Issue 14, p1097-1105, 9p > > Abstract: Purpose. Although chest physiotherapy is central to the > management of cystic fibrosis (CF), adherence among children is > problematic. This study explores accounts by parents and children of the > difficulties of adhering to chest physiotherapy for cystic fibrosis, and > identifies strategies used by families to overcome these. Methods. A > qualitative study based on in-depth interviews with 32 children with a > diagnosis of cystic fibrosis aged 7 - 17 years, and with 31 parents. > Results. Physiotherapy was frequently described as restrictive, > threatening to identity and boring, giving rise to feelings of unfairness, > inequality, 'difference', and social stigma. Motivation to adhere was > influenced by perceptions of effectiveness that depended on external signs > evident during or after the physiotherapy. Motivation was enhanced where > parents and children visualized the accumulation of mucus. Some parents > had developed distraction techniques that improved the experience of chest > physiotherapy but had few opportunities to share these with other parents. > Conclusion. The experience of physiotherapy is problematic to some parents > and children. Furthermore, motivation to overcome these problems may be > undermined by perceptions of ineffectiveness. Distraction techniques that > change the value that the child places on the time spent doing > physiotherapy and that reduces their perception of its duration may > improve experience and adherence. The potential of visualization > techniques to promote adherence should be investigated further. > > Beth Benoit > Granite State College > Plymouth State University > New Hampshire > --- ---
