ArticlePatient education and counseling2013
Factors that influence parents' experiences with results disclosure after newborn screening identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy.
Article in Patient education and counseling, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
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Who cites it
20 citing papers in PubMed.
- Communication of an Abnormal Metabolic Newborn Screening Result in the Netherlands: A Qualitative Exploratory Study of the General Practitioner's Perspective.International journal of neonatal screening · 2025Article
- Psychosocial Impact of False-Positive Newborn Screening Results: A Scoping Review.Children (Basel, Switzerland) · 2024Article
- Current Methods of Newborn Screening Follow-Up for Sickle Cell Disease Are Highly Variable and without Quality Assurance: Results from the ENHANCE Study.International journal of neonatal screening · 2024Article
- Parental Preferences about Policy Options Regarding Disclosure of Incidental Genetic Findings in Newborn Screening: Using Videos and the Internet to Educate and Obtain Input.International journal of neonatal screening · 2022Article
- Psychosocial Issues Related to Newborn Screening: A Systematic Review and Synthesis.International journal of neonatal screening · 2022Review
- Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study.Journal of participatory medicine · 2022Article
- Article
- Processing of Positive Newborn Screening Results for Congenital Hypothyroidism: A Qualitative Exploration of Current Practice in England.International journal of neonatal screening · 2021Article
- Process evaluation of co-designed interventions to improve communication of positive newborn bloodspot screening results.BMJ open · 2021Article
- Health services use by children identified as heterozygous hemoglobinopathy mutation carriers via newborn screening.BMC pediatrics · 2021Article
- Sickle cell trait newborn screen results: disclosure and management.Journal of community genetics · 2021Article
- Article
- Article
- Healthcare professionals' and parents' experiences of the confirmatory testing period: a qualitative study of the UK expanded newborn screening pilot.BMC pediatrics · 2017Article
- Parents' Experiences of Receiving the Initial Positive Newborn Screening (NBS) Result for Cystic Fibrosis and Sickle Cell Disease.Journal of genetic counseling · 2016Article
- Parents' responses to receiving sickle cell or cystic fibrosis carrier results for their child following newborn screening.European journal of human genetics : EJHG · 2015Article
- Disparities in current and future childhood and newborn carrier identification.Journal of genetic counseling · 2014Article
- Frequency of high-quality communication behaviors used by primary care providers of heterozygous infants after newborn screening.Patient education and counseling · 2013Article
- Informing parents about positive newborn screen results: parents' recommendations.Journal of child health care : for professionals working with children in the hospital and community · 2012Article
- A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
objectiveNewborn screening (NBS) identifies genetic carriers for sickle cell hemoglobinopathy and cystic fibrosis. We aimed to identify factors during initial NBS carrier results disclosure by primary care providers (PCPs) that influenced parents' experiences and reactions.
methodsOpen-ended responses from telephone interviews with 270 parents of carriers were analyzed using mixed-methods. Conventional content analysis identified influential factors; chi-square tests analyzed relationships between factors and parent-reported reactions.
resultsParents reported positive (35%) or negative (31%) reactions to results disclosure. Parents' experiences were influenced by specific factors: content messages (72%), PCP traits (47%), and aspects of the setting (30%). Including at least one of five specific content messages was associated (p<0.05) with positive parental reactions; omitting at least one of four specific content messages was associated (p<0.05) with negative parental reactions. Parents reported positive reactions when PCPs avoided jargon or were perceived as calm. Parents reported negative reactions to jargon usage and results disclosure by voicemail.
conclusionParents identified aspects of PCP communication which influenced their reactions and results disclosure experiences. PRACTICE IMPLICATIONS: Our findings suggest ways PCPs may improve communication of carrier results. PCPs should provide specific content messages and consider how their actions, characteristics, and setting can influence parental reactions.
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