Parents' Perspectives and Societal Acceptance of Implementation of Newborn Screening for SCID in the Netherlands.
J Clin Immunol
; 41(1): 99-108, 2021 01.
Article
en En
| MEDLINE
| ID: mdl-33070266
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 addition, questionnaires about NBS for SCID were sent to 2000 parents of healthy newborns who either participated or declined participation in the SONNET-study that screened 140,593 newborns for SCID.RESULTS:
Support for NBS for SCID was expressed by the majority of parents in questionnaires from both a public health perspective and a personal perspective. Parents emphasized the emotional impact of an abnormal screening result in interviews. (Long-term) stress and anxiety can be experienced during and after referral indicating the importance of uniform follow-up protocols and adequate information provision.CONCLUSION:
The perspective of parents has led to several recommendations for NBS programs that are considering screening for SCID or other disorders. A close partnership of NBS programs' stakeholders, immunologists, geneticists, and pediatricians-immunologists in different countries is required for moving towards universal SCID screening for all infants.Palabras clave
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Padres
/
Aceptación de la Atención de Salud
/
Tamizaje Neonatal
/
Inmunodeficiencia Combinada Grave
/
Implementación de Plan de Salud
Tipo de estudio:
Diagnostic_studies
/
Etiology_studies
/
Qualitative_research
/
Screening_studies
/
Sysrev_observational_studies
Límite:
Humans
/
Newborn
País/Región como asunto:
Europa
Idioma:
En
Revista:
J Clin Immunol
Año:
2021
Tipo del documento:
Article
País de afiliación:
Países Bajos