Asset Details
Do you wish to reserve the book?
The Impact of Neurofibromatosis Type 1 on the Health and Wellbeing of Australian Adults
Hey, we have placed the reservation for you!
By the way, why not check out events that you can attend while you pick your title.
Oops! Something went wrong.
Looks like we were not able to place the reservation. Kindly try again later.
Are you sure you want to remove the book from the shelf?
The Impact of Neurofibromatosis Type 1 on the Health and Wellbeing of Australian Adults
Do you wish to request the book?
The Impact of Neurofibromatosis Type 1 on the Health and Wellbeing of Australian Adults
Please be aware that the book you have requested cannot be checked out. If you would like to checkout this book, you can reserve another copy
We have requested the book for you!
Your request is successful and it will be processed during the Library working hours. Please check the status of your request in My Requests.
Oops! Something went wrong.
Looks like we were not able to place your request. Kindly try again later.
Journal Article
The Impact of Neurofibromatosis Type 1 on the Health and Wellbeing of Australian Adults
2015
Overview
The complications of neurofibromatosis type 1 (NF1) are widespread, unpredictable and variable and each person’s experience of this disorder is unique. However, few studies have addressed the impact of NF1 from an individual’s perspective. This qualitative study aims to identify the ways in which NF1 impacts upon affected Australian adults. Sixty adults with NF1, with a range of disease severity and visibility participated in a semi-structured interview about the ways in which NF1 impacted upon their life and health. Data were analyzed using grounded theory methodology. Results indicated that NF1 impacts upon affected adults in five major ways: 1) cosmetic burden of disease 2) learning difficulties 3) concerns about the risk of passing NF1 to offspring 4) uncertain disease progression, and 5) pain. Participants identified the aspects of NF1 that bothered them the most, creating a hierarchy of NF1 concerns within the cohort. Importantly, mildly affected adults shared many of the same concerns as those more severely affected. This study enhances our current understanding of the impact of NF1 in adulthood, and augments existing recommendations for the care of these patients.
Publisher
Springer US,Blackwell Publishing Ltd
Subject
