recomended books about cf??

Question

Hi! I live in norway, and am a mother of a boy with cf.I am also a masterstudent in pedagogic, and i am about to write an academical desertation abot beeing parents /familie to children with cf. I do But i have difficulties with finding newer litterature,and reserch, about this topic. Here on my spot cf is rare, only 25o people got it , so its a kind of unknown desies, proably thats why there is so difficult for me to find "things" for my asignement. Do anyone have some recomandations, or ideas about academical books or reserch cocerning Cf_family ??
Thanks.
Rita

Answer

Dear Rita,

Thank you for your question regarding your request for recommendations about academic books and research concerning being part of a family of a person with cystic fibrosis.

There is quite a lot of literature on this topic and although I am not sure of the specific details of your assignment hopefully the following information will be of help to you:

There is a book: ‘In the shadows of illness: parents and siblings of the chronically ill child’ (2000) by Myra Bluebond-Langer which demonstrates what it is like to live with a child who has a chronic, life-threatening disease and the impact it can have on siblings in the family.

There are a couple of CF specific websites such as the CF worldwide website CF worldwide website: www.cfww.org. There are also some useful fact sheets and useful links to other organisations available on the CF trust (UK) website https://www.cysticfibrosis.org.uk . You may also wish to visit the Norwegian CF website www.cfnorge.no.


There are numerous publications which might be helpful to you e.g. Britto et al. 2004 studies the differences between how an adolescent with cystic fibrosis reports their health related quality of life in comparison to their parents. (Britto MT, Kotagal UR, Chenier T, Tsevat J, Atherton HD, Wilmott RW. Differences between adolescents and parents reports of health related quality of life in cystic fibrosis. 2004; 37(2): 165-171). Janse et al 2005 investigates the differences in perceptions of quality of life between parents of chronically ill children and paediatricians at diagnosis and follow up. (Janse AJ, Sinnema G,Uiterwaal CSPM, Kimpen JLL, Gemke RJBJ. Quality of life in chronic illness: perceptions of parents and paediatricians. Arch. Dis. Chils. 2005; 90: 486-491).

I hope this helps and good luck with your studies.

Judy Bradley

13.03.2008

The answer is edited by: Prof Judy Bradley