Coping with CF

[anonymous]

Hello!

I am a social worker with a special interest in working with persons affected by CF. I had/have a number of friends with CF and have a keen interest in conducting research in how people cope with this illness. I have just completed a study on parent's experience of their child with CF's transition to school. Wondering what people feel are the most important areas to explore? Dealing with the diagnosis? Transition from pediatric care to adult care? Choice to have more children? I look forward to hearing from you and receiving your valuable input. Thanks!

Karen

 

[anonymous]

Hello Karen,

I'm in a helping field as well. I have assisted with interesting studies in a few areas you might want to look at. I'm a parent of a 4 yr. old with CF. I'm involved with our CF clinic for school purposes/research/volunteer work. I also belong to a parent support group at our clinic and one of the number one concerns is eating. Eating and behavior gives you a lot of room to explore. There is a man by the name of Scott Powers at Cinncinati Children's Hospital who has done some great work with this - you may want to look at some of his journals/articles. I've also participated in studies that question parents about how to make hospital stays for both child/parent more comfortable/enjoyable. Please e-mail me if you need some ideas. There are a lot of areas to explore!

Carey
(bono40@aol.com)

 

[anonymous]

Hi My daughter had c.f. she passed away 2years ago, if you have any questions about what life is like I have seen it all. Lisa was only 17yrs old , she had a feeding tube and a port for I.V.access. She was very ill for the last years of her life. We did alot of I.V. antibiotics at home, my husband and I did most of the work at home. Lisa also helped with her care, she was a very strong girl. I would be glad to answer any questions you have.
Mary
marzeell@aol.com

 

[anonymous]

Hi
I was wondering what state you are in? the social worker i deel with is great but at times i feel when i ask a question she doesn't have any answers i've asked about programs for help with the amount of yogurt and fat foods she says there aren't any but yet if i didn't work i would be able to get on W.I.C program in the state of NJ there has got to be some kind of help..if you can help please let me know..via the forum or thru my e-mail
RLVILLELL@COMCAST.NET
thnk you for your help
Lisa mom of 19 month w/cf