Dataset Information

Experiences of Families Caring for Children with Newborn Screening-Related Conditions: Implications for the Expansion of Genomics in Population-Based Neonatal Public Health Programs.

ABSTRACT: 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.

SUBMITTER: Bush L

PROVIDER: S-EPMC9149923 | biostudies-literature | 2022 May

REPOSITORIES: biostudies-literature

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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.

Bush Lynn L Davidson Hannah H Gelles Shani S Lea Dawn D Koehly Laura M LM

International journal of neonatal screening 20220523 2

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 p ...[more]

PMID: 35645289

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Project description:BackgroundPublic safety occupations are well-recognized to be dangerous and stressful. Despite recent attention on post-traumatic stress injuries among public safety personnel, there has been considerably less attention paid to the ongoing ways in which the risks and requirements associated with those occupations shape family life, and how families respond and adapt to those lifestyle dimensions. This systematic review aims to understand how day-to-day family life is affected and shaped when a family member works in a public safety sector, such as fire, police, paramedic, corrections, and emergency communications.MethodsQualitative studies that examine the experiences of families or family members of public safety personnel will be included in this review, with no date or language restrictions. An initial search of Embase and CINAHL will be conducted, followed by an analysis of text words contained in the title and abstract, and of the index terms used to describe the articles. Databases to be searched for published studies include MEDLINE, Embase, Web of Sciences, CINAHL, PsycINFO, and Sociological Abstracts. Titles and abstracts will be screened by two independent reviewers. The full texts of selected studies will be assessed in detail, and findings and their illustrations will be extracted and aggregated. Any disagreements between the reviewers that arise at each stage will be resolved through discussion, or by a third reviewer. Further analysis of the synthesized findings will be informed by family systems theory.DiscussionThe ways that occupational risks and requirements shape family life have been better investigated within other high-risk occupation groups, which has led to productive advancements in organizational policies and supports in the respective sectors. An understanding of the experiences which typify family life ongoing within PSP sectors is a critical gap in the development of meaningful family-informed occupational initiatives and supports.Systematic review registrationSubmitted to PROSPERO for systematic review registration: CRD42020208126.

Dataset Information

Experiences of Families Caring for Children with Newborn Screening-Related Conditions: Implications for the Expansion of Genomics in Population-Based Neonatal Public Health Programs.

Publications

Experiences of Families Caring for Children with Newborn Screening-Related Conditions: Implications for the Expansion of Genomics in Population-Based Neonatal Public Health Programs.

Similar Datasets

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