Proposed Data Collections Submitted for Public Comment and Recommendations

In compliance with the requirement of Section 3506(c)(2)(A) of the Paperwork Reduction Act of 1995 for opportunity for public comment on proposed data collection projects, the Centers for Disease Control and Prevention (CDC) will publish periodic summaries of proposed projects. To request more information on the proposed projects or to obtain a copy of the data collection plans and instruments, call 404-639-5960 and send comments to Maryam I. Daneshvar, CDC Acting Reports Clearance Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333 or send an e-mail to omb@cdc.gov.

Comments are invited on: (a) Whether the proposed collection of information is necessary for the proper performance of the functions of the agency, including whether the information shall have practical utility; (b) the accuracy of the agency's estimate of the burden of the proposed collection of information; (c) ways to enhance the quality, utility, and clarity of the information to be collected; and (d) ways to minimize the burden of the collection of information on respondents, including through the use of automated collection techniques or other forms of information technology. Written comments should be received within 60 days of this notice.

Proposed Project

Formative Evaluation and Message Testing to Inform the Development of Health Promotion Materials for the National Hemophilia Foundation's Hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI)—NEW—National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC).

Background and Brief Description

The Division of Blood Disorders, located within the National Center on Birth Defects and Developmental Disabilities, implements health promotion and wellness programs designed to prevent secondary conditions in people with bleeding and clotting disorders. These programs are carried out in partnership with community-based organizations on the national and local level. The division's largest and longest standing cooperative agreement is held by the National Hemophilia Foundation (NHF). NHF, founded in 1948, has a long history of service through education, advocacy and research for people and families with hemophilia and other bleeding disorders.

The Hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI) is NHF's resource center which provides information, materials, and support to people with bleeding and clotting disorders. Over the past 17 years, HANDI's resource collection has grown to meet the changing needs of the community. HANDI processes thousands of requests for information from a wide variety of individuals and organizations including NHF chapters, medical professionals, consumers and their families, and teachers and students conducting research. The types of information requested reflect a diversity of needs—topics include home care, orthopedics, physical therapy, rare factor deficiencies, psychosocial issues, blood safety, women's health, and financial and insurance reimbursement issues. HANDI's current resource library collection contains nearly 13,000 items. However, the process by which materials have been selected for development has not been informed by a systematic needs assessment or other exploratory research. Therefore it is not known if the materials and messages that have been developed are meeting the information needs of the audiences they were intended to serve.

While there seems to be many HANDI materials available that focus on parents and family members of newly diagnosed children, considerably less attention has been given to developing materials for young children and adolescents, particularly materials that address transition issues. There are many types of transitions for the person with a bleeding disorder. These include acceptance of the bleeding disorder, self care, progressing through school, vocational/career planning, moving to an adult center, starting a family, middle age, and retirement. Transition occurs throughout life for all people, but for those with chronic illness, it takes on additional significance due to the nature of their condition.

The CDC's Division of Blood Disorders in conjunction with the National Hemophilia Foundation will conduct focus groups to gather information that will be used to design educational materials and health promotion programs for young children (aged 5-12 years) and adolescents (aged 16-19 years) that address transition issues. Focus groups will be used to explore the type of information, resources, and support young children and adolescents need related to transition issues. The groups will also be used to explore how young children and adolescents prefer to receive health messages and health information (e.g., brochures, videos, podcasts, U-tube, etc.). These findings will inform the development of key messages tailored to the target audiences that will then be tested during another set of focus groups to see how well the messages resonate with the intended end users.

The Contractor selected will work with CDC and NHF, through its chapter network, to identify and recruit focus group participants. Formative research participants will include parents of young children (aged 5-12 years), parents of teenagers or young adults who can reflect back upon their experience and share what information, resources, and support they wished had been available when their child was young, and adolescents (aged 16-19 years). Message testing participants will include parents of young children (aged 5-12 years) and adolescents (aged 16-19 years). Participants will be recruited to participate in one of sixteen in-person focus groups that will be conducted in the following cities:

• Detroit, Atlanta, Philadelphia, San Francisco (for the formative research task), and
• Milwaukee, Houston, Boston, and San Diego (for the message testing task)

There are no costs to the respondents other than their time.