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Experiences of Families Caring for Children with Newborn Screening-Related Conditions: Implications for the Expansion of Genomics in Population-Based Neonatal Public Health Programs
| Content Provider | MDPI |
|---|---|
| Author | Bush, Lynn Davidson, Hannah Gelles, Shani Lea, Dawn Koehly, Laura M. |
| Copyright Year | 2022 |
| Description | With the expansion of newborn screening conditions globally and the increased use of genomic technologies for early detection, there is a need for ethically nuanced policies to guide the future integration of ever-more comprehensive genomics into population-based newborn screening programs. In the current paper, we consider the lived experiences of 169 family caregivers caring for 77 children with NBS-related conditions to identify lessons learned that can inform policy and practice related to population-based newborn screening using genomic technologies. Based on caregiver narratives obtained through in-depth interviews, we identify themes characterizing these families’ diagnostic odyssey continuum, which fall within two domains: (1) medical management implications of a child diagnosed with an NBS-related condition and (2) psychological implications of a child diagnosed with an NBS-related condition. For Domain 1, family caregivers’ experiences point to the need for educational resources for both health care professionals that serve children with NBS-related conditions and their families; empowerment programs for family caregivers; training for providers in patient-centered communication; and access to multi-disciplinary specialists. For Domain 2, caregivers’ experiences suggest a need for access to continuous, long-term counseling resources; patient navigator resources; and peer support programs. These lessons learned can inform policy recommendations for the benefit of the child, the family, the healthcare system, and society. |
| Starting Page | 35 |
| e-ISSN | 2409515X |
| DOI | 10.3390/ijns8020035 |
| Journal | International Journal of Neonatal Screening |
| Issue Number | 2 |
| Volume Number | 8 |
| Language | English |
| Publisher | MDPI |
| Publisher Date | 2022-05-23 |
| Access Restriction | Open |
| Subject Keyword | International Journal of Neonatal Screening Social Work Newborn Screening Sequencing Newborn Genomics Ethics Psychosocial Pediatric Rare Disease |
| Content Type | Text |
| Resource Type | Article |
