Parental Decision Making Regarding Level of Newborn Screening Participation in the Homebirth Setting

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Abstract

Newborn screening (NBS) is a public health initiative (PHI) that identifies newborns with critical health conditions or deafness, allowing for intervention or life saving treatments. Information regarding NBS education following homebirths is limited. We sought to understand homebirth parents’ NBS experiences. Interview participants were recruited from Facebook groups through a screening questionnaire. An interpretivist paradigm was employed through narrative analysis, deriving themes from the life-experiences of homebirth clients about provision/abnegation from NBS. Inductive, double, coding was employed. The coding schema was iteratively applied to eight semi-structured interviews. Five narrative domains were identified: Birth Setting, Birth Plan, NBS, Misconceptions , and Education . Decisions about birth-setting were influenced by prior healthcare experiences, parental desire to avoid hospital-associated-infections, and perceived parental autonomy. While all interviewees were aware of NBS, not all components of NBS were completed in an appropriate or timely manner. Barriers to NBS implementation were exacerbated by misconceptions about its purpose and ability, leading to a desire for more comprehensive education. Importantly, all five narrative domains are interdependent with aspects of each impacting client perceptions and actions within other domains. Misconceptions breed mistrust; fostering greater psychological safety through comprehensive consent discussions– exploring client goals and understanding –may increase trust in PHIs. Consent should focus on the purpose and abilities of NBS; thus, reducing risk perception and enhancing understanding of its benefits in both homebirth and hospital settings. Paired written and oral communication, multidisciplinary care leveraging genetic counselors, and focused continuing medical education for midwives and prenatal providers may further improve NBS.

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