Factors that influence parents' experiences with results disclosure after newborn screening identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy

PATIENT EDUCATION AND COUNSELING

卷:90

Article

Collins, Jenelle L.¹  La Pean, Alison¹  O'Tool, Faith¹  Eskra, Kerry L.¹  Roedl, Sara J.¹  Tluczek, Audrey²  Farrell, Michael H.¹ 

[1] Med Coll Wisconsin, Ctr Patient Care & Outcomes Res, Milwaukee, WI 53226 USA

[2] Univ Wisconsin, Sch Nursing, Madison, WI USA

关键词: Newborn screening;    Cystic fibrosis carrier;    Sickle cell trait;    Results disclosure;    Heterozygote;    Genetic carrier detection;    Psychosocial outcomes;    Genetic counseling;    Patient-provider communication;    Patient preferences;    Parental anxiety;   

DOI  :  10.1016/j.pec.2011.12.007

来源: Elsevier

【 摘 要 】

Objective: Newborn 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. Methods: Open-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. Results: Parents 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. Conclusion: Parents 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. (C) 2011 Elsevier Ireland Ltd. All rights reserved.

【 授权许可】

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