Abnormal results of newborn screening for common metabolic diseases are known to create substantial distress for parents. We explored parents' perceptions during diagnostic evaluations for newer disorders that are less well understood.
Thirty families completed 48 open-ended interviews before and/or after parents received confirmatory test results for their infants. Qualitative content analysis was used to analyze the data.
Parents were shocked by the notification of the abnormal test result. Their urgent and often frustrating searches for information dominated the early phase of the screening process. Treatment center personnel were mainly informative and reassuring, but waiting for results exacerbated parents' distress. Equivocal results from diagnostic testing created uncertainties for parents regarding their infants' long-term health. After counseling, some parents reported inaccurate ideas about the disorders despite exposure to large amounts of information. Regardless of the challenges and anxieties of the evaluation, nearly every parent thought newborn screening was an important program for infant health.
The evaluation of a newborn for an abnormal screening result was highly stressful for parents. To help reduce parents' distress, improvements in communications and clinical services are needed. Recommendations of useful Internet sites and discussions of this information may benefit parents. Tailoring counseling to meet the needs of culturally and educationally diverse families is needed. Families and infants with equivocal results are a new group of patients who merit comprehensive clinical follow-up.
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"Parents tend to experience significant emotional distress when notified about abnormal results (Moran, Quirk, Duff, & Brownlee, 2007; Tluczek et al., 2006 ). Given that most abnormal NBS results prove to be false positive, countless parents are caused needlessly to worry about their infants' well-being (Ciske et al., 2001; DeLuca, Kearney, Norton, & Arnold, 2011; Gurian, Kinnamon, Henry, & Waisbren, 2006; M ´ erelle et al., 2003), experience parenting stress (Gurian et al.; Waisbren et al., 2003), experience depressive and somatic symptoms (Sorenson, Levy, Mangione, & Sepe, 1984; Tluczek, Koscik, Farrell, & Rock, 2005), and may alter reproductive decisions (Mischler et al., 1998; Morrison & Clayton, 2011 ). Notification also occurs when women are susceptible to postpartum depressive symptoms that could be exacerbated by such news (Tluczek, McKechnie, & Lynam, 2010 ). "
[Show abstract][Hide abstract]ABSTRACT: Advanced biomedical and genetic technologies are transforming newborn screening (NBS) programs. Nurses who work with families across perinatal care settings require knowledge of the policies that guide NBS practices and the controversies posed by the rapid application of genetic research to NBS. We provide an overview of NBS, outline challenges generated by expansion of NBS programs, and discuss implications for the nurses, nurse practitioners, and midwives in clinical practice, education, and research.
Preview · Article · Oct 2013 · Journal of Obstetric Gynecologic & Neonatal Nursing
"The authors express their appreciation to Debra Skinner for her comments on the manuscript and assistance with coding, and to colleagues at the University of California-Davis and Rush University Medical Center for suggestions on the brochure. receiving information about NBS (Davis et al. 2006; DeLuca et al. 2011; Hasegawa et al. 2011), often because information is provided in the hospital shortly before or after birth. Parents prefer to receive this information prenatally (Detmar et al. 2007 ), as recommended by professional associations (Faulkner et al. 2006; AAP American Academy of Pediatrics (AAP) Newborn Screening Taskforce 2000). "
[Show abstract][Hide abstract]ABSTRACT: The major objectives of this project were to develop and evaluate a brochure to help parents make an informed decision about participation in a fragile X newborn screening study. We used an iterative development process that drew on principles of Informed Decision Making (IDM), stakeholder input, design expertise, and expert evaluation. A simulation study with 118 women examined response to the brochure. An independent review rated the brochure high on informational content, guidance, and values. Mothers took an average of 6.5 min to read it and scored an average of 91.1 % correct on a knowledge test. Most women rated the brochure as high quality and trustworthy. When asked to make a hypothetical decision about study participation, 61.9 % would agree to screening. Structural equation modeling showed that agreement to screening and decisional confidence were associated with perceived quality and trust in the brochure. Minority and white mothers did not differ in perceptions of quality or trust. We demonstrate the application of IDM in developing a study brochure. The brochure was highly rated by experts and consumers, met high standards for IDM, and achieved stated goals in a simulation study. The IDM provides a model for consent in research disclosing complicated genetic information of uncertain value.
Full-text · Article · Jun 2012 · Journal of Genetic Counseling
[Show abstract][Hide abstract]ABSTRACT: Internet searches on health topics are common, but not enough is known about online use during serious health concerns. The aim of this study was to investigate parents' internet use and responses to online information following the referral of their newborn screen-positive infants.
Forty-four parents were interviewed about their internet use during their infants' evaluations for a potential metabolic disorder. Responses to open-ended questions were audio taped and transcribed. Content analysis was used in analyzing the interview data.
An overwhelming majority of parents (89%) accessed the internet and most went online before meeting with genetic providers at metabolic treatment centers. Primary and genetic providers did not routinely recommend websites to parents. Online descriptions of metabolic disorders increased parents' anxieties. Some parents allayed their distress by enlisting others to search and filter information for them and by seeking optimistic internet content about the disorders. Parents with fewer years of education were often baffled by complex disease information. Parents found limited information about treatments or what to expect during the clinical evaluations of their infants.
The internet is an integral part of health care and an important source of information for newborn screening parents. Parents may benefit from recommendations of credible websites and discussions of internet information with health care providers.
No preview · Article · Feb 2012 · Journal of Inherited Metabolic Disease