So there seems to be oodles of stuff on the phsycial aspects of CF, but not so much on the psychological or psychosocial aspects.
I found the stuff listed down below.
Do you have any more to add?
What would be helpful to know?
---
Myra Bluebond- Langner has written in the area of psychosocial aspects of cystic fibrosis.
Her first book was "In the Shadow: The parents and siblings of chronically ill children"(
<a target=_blank class=ftalternatingbarlinklarge href="http://www.division42.org/MembersArea/Nws_Views/articles/Reviews_Books/in_shadow.html">http://www.division42.org/Memb...s_Books/in_shadow.html</a> ).
Because it was written in 1996 it is out of date when it talks about treatments and longevity and such, but it is still interesting to read to see what different coping strategies different families have used at different stages and the pluses and minuses of those coping strategies.
Her newest book (2001) is "Psychosocial Aspects of Cystic Fibrosis" ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.amazon.com/gp/product/0340758910/sr=8-1/qid=1146511931/ref=sr_1_1/104-6737304-7892768?%5Fencoding=UTF8">http://www.amazon.com/gp/produ...92768?%5Fencoding=UTF8</a> ) Of course, 2001 means it's out of date too.
Other stuff online, include:
"Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity?" at <a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmjjournals.com/cgi/content/full/53/9/727">http://thorax.bmjjournals.com/cgi/content/full/53/9/727</a> )
"Psychological consequences of segregation resulting from chronic Burkholderia cepacia infection in adults with CF " at <a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmjjournals.com/cgi/content/full/57/9/756">http://thorax.bmjjournals.com/cgi/content/full/57/9/756</a> )
"When the Child's Illness Is Life Threatening: Impact on the Parents" <a target=_blank class=ftalternatingbarlinklarge href="http://www.medscape.com/viewarticle/444200_print">http://www.medscape.com/viewarticle/444200_print</a> )
"Quality of life in cystic fibrosis " <a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmjjournals.com/cgi/content/full/53/9/721
">http://thorax.bmjjournals.com/...content/full/53/9/721
</a>
I found the stuff listed down below.
Do you have any more to add?
What would be helpful to know?
---
Myra Bluebond- Langner has written in the area of psychosocial aspects of cystic fibrosis.
Her first book was "In the Shadow: The parents and siblings of chronically ill children"(
<a target=_blank class=ftalternatingbarlinklarge href="http://www.division42.org/MembersArea/Nws_Views/articles/Reviews_Books/in_shadow.html">http://www.division42.org/Memb...s_Books/in_shadow.html</a> ).
Because it was written in 1996 it is out of date when it talks about treatments and longevity and such, but it is still interesting to read to see what different coping strategies different families have used at different stages and the pluses and minuses of those coping strategies.
Her newest book (2001) is "Psychosocial Aspects of Cystic Fibrosis" ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.amazon.com/gp/product/0340758910/sr=8-1/qid=1146511931/ref=sr_1_1/104-6737304-7892768?%5Fencoding=UTF8">http://www.amazon.com/gp/produ...92768?%5Fencoding=UTF8</a> ) Of course, 2001 means it's out of date too.
Other stuff online, include:
"Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity?" at <a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmjjournals.com/cgi/content/full/53/9/727">http://thorax.bmjjournals.com/cgi/content/full/53/9/727</a> )
"Psychological consequences of segregation resulting from chronic Burkholderia cepacia infection in adults with CF " at <a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmjjournals.com/cgi/content/full/57/9/756">http://thorax.bmjjournals.com/cgi/content/full/57/9/756</a> )
"When the Child's Illness Is Life Threatening: Impact on the Parents" <a target=_blank class=ftalternatingbarlinklarge href="http://www.medscape.com/viewarticle/444200_print">http://www.medscape.com/viewarticle/444200_print</a> )
"Quality of life in cystic fibrosis " <a target=_blank class=ftalternatingbarlinklarge href="http://thorax.bmjjournals.com/cgi/content/full/53/9/721
">http://thorax.bmjjournals.com/...content/full/53/9/721
</a>