What Do Families Want to Know? Caregiver Information Needs Following a Newborn Screening for Cystic Fibrosis

Theoretical Background and research questions/hypothesis:  Each year in the State of Florida, more than 500 children are identified via the State newborn screening who either have cystic fibrosis or are carriers of the cystic fibrosis gene. Early detection is extremely helpful for early intervention in cystic fibrosis infants.  However, the screening and testing process creates much anxiety for new parents who may not have heard of cystic fibrosis before their initial contact with the screening program. This anxiety can be compounded when their child carries a mutation, which does not cause classic disease, but is still not “normal”. The need to see a geneticist and wait for an appointment creates much anxiety for new parents who may not have heard of genetic evaluations in general and testing for autism in particular. Previous research shows that in the absence of information from physicians, parents frequently turn to the Internet for information. While the Internet as an information channel provides an easy-to-access and flexible medium to share information, it presents a challenge. The amount of available information can be overwhelming for patients and its quality in not consistent. This project aims to understand and address caregiver needs for relevant information following a newborn screening for cystic fibrosis.

Methods: This study was approved by an IRB. We have conducted a series of in-depth interviews, during which the primary caregiver was asked about the information he or she were trying to find or wished they knew before the visit.

Results: The in-depth interviews have revealed the following communication needs: the need for one comprehensive source of information about CF; the need for guidance in an information search and key words to look for; the need for information about cystic fibrosis gene carrier status and disease diagnosis; focus on immediate communication and information needs (rather than considerations about future communication with the child or future family planning); the need for guidance in holding family conversations and avoiding blame and stigma.

Conclusions: This study provides rich evidence about the information and communication needs related to cystic fibrosis testing faced by the caregivers of newborn children.

Implications for research and/or practice: Guided by these findings, communication scholars can develop and test information materials, which will provide families with newborn babies necessary information about cystic fibrosis without overwhelming them with information. These materials should also help facilitating the conversations about cystic fibrosis and gene carrier status among the family members. In parallel, medical practices can use results of this study to focus in-office conversations with caregivers of the newborn babies tested by cystic fibrosis on the topics most salient for these families.