Parents' Perspectives and Societal Acceptance of Implementation of Newborn Screening for SCID in the Netherlands.

ABSTRACT:

Purpose

While neonatal bloodspot screening (NBS) for severe combined immunodeficiency (SCID) has been introduced more than a decade ago, implementation in NBS programs remains challenging in many countries. Even if high-quality test methods and follow-up care are available, public uptake and parental acceptance are not guaranteed. The aim of this study was to describe the parental perspective on NBS for SCID in the context of an implementation pilot. Psychosocial aspects have never been studied before for NBS for SCID and are important for societal acceptance, a major criterion when introducing new disorders in NBS programs.

Methods

To evaluate the perspective of parents, interviews were conducted with parents of newborns with abnormal SCID screening results (N = 17). In add

SUBMITTER: Blom M 

PROVIDER: S-EPMC7846522 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature