Sharing family health histories in the electronic age: Strengths and limitations

Significant stigma exists in communities and families surrounding health information. Privacy concerns and fears of discrimination within the family can make it difficult to discuss health. Yet the family plays an important role in shaping a person's habits and encouraging healthy behaviors. In addition, genes passed down through generations can be significant predictors of risk for developing a condition. For these reasons, discussing health history with your family can save your life.

The National Psoriasis Foundation network extends across the country. As a result, much of our health information is communicated electronically. Also, because our community is brought together by a shared disease and not geography, much of this community exists in a virtual sense. Message boards and chat rooms play a large role in communication among community members. For this reason, we recruited participants through the Foundation's well-established virtual community. Community Advisory Board (CAB) members were also recruited through e-mail.

In this presentation we describe the unique challenges of recruiting and communicating with project participants through primarily electronic means. We will also explore how participants' communication with project staff at the Foundation compares with their intra-family communication styles as indicated in Foundation-specific post interviews with the participants. Results are discussed in an effort to portray how this particular health communication process affected the participants' overall communication, understanding, and behavior related to their disease. Strengths and limitations of the research methodology will be discussed, as well as recommendations for future research in this area.