Identifying Information Needs Among Children and Teens Living With Hemophilia
Advanced Search
Select up to three search categories and corresponding keywords using the fields to the right. Refer to the Help section for more detailed instructions.

Search our Collections & Repository

All these words:

For very narrow results

This exact word or phrase:

When looking for a specific result

Any of these words:

Best used for discovery & interchangable words

None of these words:

Recommended to be used in conjunction with other fields

Language:

Dates

Publication Date Range:

to

Document Data

Title:

Document Type:

Library

Collection:

Series:

People

Author:

Help
Clear All

Query Builder

Query box

Help
Clear All

For additional assistance using the Custom Query please check out our Help Page

i

Identifying Information Needs Among Children and Teens Living With Hemophilia

Filetype[PDF-253.72 KB]


Details Supporting Files You May Also Like

Details:

  • Alternative Title:
    Haemophilia
  • Publisher's site:
    http://dx.doi.org/10.1111/hae.12223
  • Personal Author:
  • Description:
    Introduction

    Transitioning from one life stage to the next can be difficult, but for those living with a chronic condition, it can be even more challenging. Children and adolescents with hemophilia need help to manage transitions while dealing with the complications of their disorder. The National Hemophilia Foundation (NHF) headquartered in New York has an extensive information center on bleeding disorders, but it was unclear how much material existed on the topic of transition.

    Aim

    The objectives of this project were to (1) assess the availability of literature about transition for children and adolescents living with hemophilia, (2) determine which transition issues were the most relevant, and (3) develop and test information products that would address those transition issues.

    Methods

    An inventory of NHF’s resources and an environmental scan over the Internet was performed. Focus groups were conducted to determine messaging. Video prototypes containing messages were created, tested by focus groups, and revised.

    Results

    The literature search yielded limited information available on transition for children and adolescents with hemophilia. Results of the formative research indicated that adolescents wanted more information on sports participation and disclosure of their condition (e.g., to peers, teachers, coaches, health care providers). Video was found to be the preferred delivery format.

    Conclusion

    Children and adolescents living with hemophilia need information to help them transition through life. As a result of this study, two educational products were produced, but several more are recommended to guide these individuals in making healthy transitions into adulthood.

  • Subject:
  • Source:
    Haemophilia. 20(1):1-8.
  • Pubmed ID:
    23809876
  • Pubmed Central ID:
    PMC4481862
  • Document Type:
    Journal Article
  • Funding:
    GUU3/Intramural CDC HHS/United States
  • Collection(s):
    CDC Public Access
  • Main Document Checksum:
  • File Type:

Supporting Files

More +

You May Also Like

Checkout today's featured content at stacks.cdc.gov