BRENDA re; PA

January 23, 2003

,

Our cf clinic is wonderful expect for the fact that we all go on Mondays

and we all sit in the waiting room. I send Eilish across the hall to

the ENT Dept. to play (better toys anyway). Then when its her turn I

call her back. That's always been my main worry about clinic. You get

the little kids who haven't got anything then the 16yr old etc. who

probably have PA all together. We always get a 9am appt. (1st one) then

were in and out hopefully before the germs arrive.

(Australia)

Re: Parental fears of Pseudomonas infection

Torsten - Thanks for the great info - I am afraid I lean a little

more toward the " bacterium-focussed " group, especially when it comes

to clinic visits and hospital stays.

I was wondering if you have any information on the prevention of

spreading bacteria from one patient to another in CF clinics. Are

some clinics better than others in this regard? Are there specific

procedures or routines for isolating patients that are helpful? The

reason I ask this is that I live in Chicago, where there are a few

different CF centers where I could place my child. What is a major

stumbling block for me is that the center I am considering,

Children's Memorial, sees all CF patients between specific hours on

specific days. (Maybe this is common to all centers.) I just

imagine all these patients sitting in a waiting room coughing on each

other, waiting to be seen by the doctors.

I would like to be informed, and ask good questions when making the

choice of which clinic for my daughter. Is there any reading you can

suggest?

R

> Hi,

>

> the CF center at MHH is only a two hour drive away from us. I am

> reliefed to know that we have great docs available there when

needed.

>

> Peace

> Torsten, dad of Fiona 5wcf

>

> Journal of Cystic Fibrosis

> Volume 1, Issue 3, September 2002, Pages 122-130

> Elsevier

> Science B. V.

>

> Parental fears of Pseudomonas infection and measures to prevent its

> acquisition*1

>

> Gerald Ullrich, , a, ne Wiedau-Görsb, Gratiana Steinkampc,

> Hans-Jürgen Bartiga, Wolfgang Schulzb and Joachim Freihorsta

>

> a Hannover Medical School, Department of Paediatrics, Division of

> Pediatric Pulmonology and Neonatology, Hannover, Germany

> b University of Braunschweig, Psychological Institute, Division of

> Clinical Psychology and Psychotherapy, Braunschweig, Germany

> c Clinical Research, Hannover, and Cystic Fibrosis Center,

> Hamburg-Altona, Germany

>

> Available online 4 September 2002.

>

> Abstract

>

> Background and aim of the study: Chronic infection with Pseudomonas

> aeruginosa (PA) is associated with accelerated worsening of lung

> disease

> in patients with cystic fibrosis (CF). Fears of PA are widespread

> among

> parents of CF children, and many parents take precautions at home to

> prevent acquisition of the bacterium from the environment. The

present

> study was undertaken to describe the type and intensity of these

> activities. Methods: Parents of 21 CF children (7 without prior PA

> infection, 10 with intermittent and 4 with chronic PA infection)

were

> investigated using semistructured interviews. These were analyzed

> descriptively and with respect to predominant themes. Additionally,

a

> German personality test was used to evaluate the influence of

> psychological factors. Results: The clinical impression of

widespread

> parental anxieties of PA infection was confirmed. Misunderstandings

> concerning PA infections were related to a simplistic concept of the

> underlying biological mechanisms. Some parents which we classified

as

> `bacterium-focussed' thought that each contact with PA would lead to

> bacterial infection. These parents used a large variety of measures,

> which concerned both domiciliary and outdoor surroundings and

> activities.

> At the other end of the spectrum were parents which we classified as

> `child-focussed' who mostly supported (and relied on) the child's

> defense

> mechanism instead of hygienic measures. Conclusions:

Recommendations

> by

> physicians on how to prevent PA acquisition from the environment

> should

> take into account possible non-intended side effects, since some

> parents

> will exaggerate daily precautions to the detriment of the child's

(and

> the parent's) quality of life.

>

> Author Keywords: Cystic fibrosis; Psychology; Health beliefs;

Parents

>

> *1 This study was supported by grants of the Forschungsgemeinschaft

> Mukoviszidose (Mukoviszidose e.V.) and of GlaxoKline Ltd. The

> main

> results were presented at the 24th European Cystic Fibrosis

> Conference in

> Vienna, 6–9/6/2001, and at the 97th Annual Meeting of the German

> Paediatric Society in Freiburg, 13–16/9/2001.

>

> Corresponding author. Kinderklinik der MHH, Carl-Neuberg-Str.1, D-

> 30623

> Hannover, Germany. Tel.: +/+; fax.:

> +; email: ullrich.Gerald@m...

January 23, 2003

Hi guys,

Here in Arkansas they make all cf children wear masks and get them back into a

room fairly quickly before any germs can be wide spread. They have also

cancelled all of the camps that any of the kids used to go to, my children have

never been to one. I agree with that, even if you have not been diagnosed with

pa, who knows if it isn't there hiding waiting to rear its ugly head. If we

could only live in a bubble and lead normal lives. :-)

Trish mom to Presley 7 yowcf, Dylan 4 yowcf/short gut