The information about this screening is complicated, given the number of disorders screened for and the range of potential results. As well as identifying those affected by these conditions, the screening also identifies those who are not affected but are carriers of the disorders and those who may have genetic alterations of unclear significance.
Midwives play a fundamental role ensuring that parents are well informed about this screening and understand the consequences of either accepting or rejecting the invitation to screen. There is evidence that when, how and in what order information about NBS is communicated can affect parents' understanding, the quality of consent they give and their ability to adapt to the screening results. Studies have consistently shown that any form of positive screening result can have a profound impact on parents for many years and that this can, in part, be due to how well-prepared they were for possible results.
This i-learn module will help midwives in the important role of helping parents to make informed choices about newborn bloodspot screening and preparing them for screening results. Support workers may also find the module useful if women seek clarity on the information.
At the end of this course on newborn bloodspot screening, you will have developed your skills in the following ways:
- Improving practice in delivering information to parents about newborn bloodspot screening and thereby helping to improve parents' ability to make choices and adapt to the results of screening
- Understanding how parents receive information about newborn bloodspot screening and how the delivery of this information could be enhanced
- Recognising the importance of timing of the delivery of information
- Understanding how parents perceive the storage of residual bloodspots and how this might impact on the consent process
- Appreciating how you can enhance the quality of consent given for bloodspot screening, including how to check if parents have understood and retained the information given
- Reflecting on your own practice in helping parents make informed choices regarding newborn bloodspot screening and preparing them for screening results
Study time: 30 minutes
Course content: 2021