Version 1
: Received: 18 July 2024 / Approved: 18 July 2024 / Online: 18 July 2024 (10:22:49 CEST)
How to cite:
Quesada, S.; Barringer, L.; Sontag, M.; Kellar-Guenther, Y. Families’ Views on Accessing and Utilizing Appropriate Newborn Screening Long-Term Follow-up. Preprints2024, 2024071487. https://doi.org/10.20944/preprints202407.1487.v1
Quesada, S.; Barringer, L.; Sontag, M.; Kellar-Guenther, Y. Families’ Views on Accessing and Utilizing Appropriate Newborn Screening Long-Term Follow-up. Preprints 2024, 2024071487. https://doi.org/10.20944/preprints202407.1487.v1
Quesada, S.; Barringer, L.; Sontag, M.; Kellar-Guenther, Y. Families’ Views on Accessing and Utilizing Appropriate Newborn Screening Long-Term Follow-up. Preprints2024, 2024071487. https://doi.org/10.20944/preprints202407.1487.v1
APA Style
Quesada, S., Barringer, L., Sontag, M., & Kellar-Guenther, Y. (2024). Families’ Views on Accessing and Utilizing Appropriate Newborn Screening Long-Term Follow-up. Preprints. https://doi.org/10.20944/preprints202407.1487.v1
Chicago/Turabian Style
Quesada, S., Marci Sontag and Yvonne Kellar-Guenther. 2024 "Families’ Views on Accessing and Utilizing Appropriate Newborn Screening Long-Term Follow-up" Preprints. https://doi.org/10.20944/preprints202407.1487.v1
Abstract
Understanding whether the long-term follow-up (LTFU) system is working for families is critical to measuring the success of newborn screening (NBS) and understanding why some families are lost to follow-up. Caregivers were recruited from six pediatric specialty care clinics. Data was gathered from caregivers via six focus groups (n=24) and open-ended responses on a survey (n=33). Caregiver participants represented a wide range of NBS-related conditions and children’s ages. While this is not the first study to gather caregivers’ input, it is unique in its breadth of perspectives (e.g., metabolic, endocrine, hemoglobinopathy, etc.) and its focus on LTFU. When asked about goals for their children, caregivers identified health-related goals (i.e., ability for children to care for themselves, not being hindered by diagnosis) and non-health related goals (i.e., defining themselves outside of disease, participating in sports, making friends). In qualifying the LTFU care they want and need for their child and the key factors that influence access and engagement, caregivers identified three themes: communication and relationships with providers; care team roles and factors; and care access and utilization factors. The themes identified are not disjoint; they are intertwined and collectively illustrate the lived experiences of families at the epicenter of LTFU care.
Keywords
newborn screening; long-term follow-up; genetic disorder; parents and caregivers; children with medical complexity
Subject
Public Health and Healthcare, Public Health and Health Services
Copyright:
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
