Parental fears of Pseudomonas infection

[Guest guest]

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

Copyright © 2002 European Cystic Fibrosis Society. Published by

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@...

[Guest guest]

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

> Copyright © 2002 European Cystic Fibrosis Society. Published by

> 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...

[Guest guest]

Hi ,

Do you know about the CF Patient Update meeting scheduled for

Tuesday, Jan. 28 (7:oo-9:00 pm) at Children's Memorial? Since it

sounds like you're still considering healthcare options, you might be

interested in attending.

One of the topics is infection control along with a question/answer

session. Also on the agenda are the results of the Zithromax study,

update on CF research efforts, and nutrition.

If you're interested, call Leah at to RSVP.

The meeting is at the Nellie Black Lounge, 700 W. Fullerton, 1st

floor, across the street from Children's at the corner of Fullerton

and Orchard. The flyer says parking is available in the hospital

parking garage for $2.

Kim

Mom of (23 1/2 with cf and asthma) and (20 asthma no cf)

> > 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

> > Copyright © 2002 European Cystic Fibrosis Society. Published by

> > 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...

[Guest guest]

Thanks Kim - (This is why I love this group!) No I didn't - I 'll

see if I can make it there.

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

> > > Copyright © 2002 European Cystic Fibrosis Society. Published by

> > > 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...

[Guest guest]

the cf center my son goes to in OHio the patients are all seen on

Wednesdays in clinic and wear masks when they are in common areas, but when

they are in a room with doc or therapist they can remove the masks. This is

not a problem for my son nor does it seem to be a problme for any of the

other children in the clinic and it does help to keep them for catching each

others bugs.(per se)

> "

>Reply-To: cfparents

>To: cfparents

>Subject: Re: Parental fears of Pseudomonas infection

>Date: Thu, 23 Jan 2003 19:56:43 -0000

>

>Hi ,

>

>Do you know about the CF Patient Update meeting scheduled for

>Tuesday, Jan. 28 (7:oo-9:00 pm) at Children's Memorial? Since it

>sounds like you're still considering healthcare options, you might be

>interested in attending.

>

>One of the topics is infection control along with a question/answer

>session. Also on the agenda are the results of the Zithromax study,

>update on CF research efforts, and nutrition.

>

>If you're interested, call Leah at to RSVP.

>

>The meeting is at the Nellie Black Lounge, 700 W. Fullerton, 1st

>floor, across the street from Children's at the corner of Fullerton

>and Orchard. The flyer says parking is available in the hospital

>parking garage for $2.

>

>Kim

>Mom of (23 1/2 with cf and asthma) and (20 asthma no cf)

>

>

> > > 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

> > > Copyright © 2002 European Cystic Fibrosis Society. Published by

> > > 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...

>

>

>-------------------------------------------

>The opinions and information exchanged on this list should IN NO WAY

>be construed as medical advice.

>

>PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

>TREATMENTS.

>

>------------------------------------

>

>

>

[Guest guest]

Hi ,

we are " bacterium focussed " too. At least during our clinic visits. I am

sure that some clinics are better than others, but they will hardly tell you

that. We keep our clinic appointmets as short as possible, bring along our

own toys, ask Fiona not to touch anything, especially no door-knobs, hold

our breath and hope for the best.

I have given up on the idea to protect Fiona everyday, since that is just

not possible. But for those two hours every three months it is okay to put

her into a bubble.

In theory our clinic segregates the CF patients, at least that is what they

have told us several times. But when I asked the nurse the last time, how

they separate Pseudomonas positive and negative patients, her reply was " who

told you that we separate the patients? " .

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...