Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study
The study objective was to identify communication messages that parents of children diagnosed with congenital cytomegalovirus (cCMV) infection reported as essential and helpful. We performed a secondary analysis of focus groups and interviews conducted with 41 parents of children with cCMV who had e...
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-08-01
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| Series: | International Journal of Neonatal Screening |
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| Online Access: | https://www.mdpi.com/2409-515X/9/3/49 |
| _version_ | 1797579573015085056 |
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| author | Tatiana M. Lanzieri Mary Ann K. Hall Ashrita Rau Holly McBride Danie Watson Carol Rheaume Gail Demmler-Harrison |
| author_facet | Tatiana M. Lanzieri Mary Ann K. Hall Ashrita Rau Holly McBride Danie Watson Carol Rheaume Gail Demmler-Harrison |
| author_sort | Tatiana M. Lanzieri |
| collection | DOAJ |
| description | The study objective was to identify communication messages that parents of children diagnosed with congenital cytomegalovirus (cCMV) infection reported as essential and helpful. We performed a secondary analysis of focus groups and interviews conducted with 41 parents of children with cCMV who had enrolled in a long-term follow-up cCMV study at an academic medical center. Three groups of parents who had children with cCMV participated in the study: parents with children symptomatic at birth, parents with children asymptomatic at birth who later developed sensorineural hearing loss, and parents with children asymptomatic at birth who remained asymptomatic into adulthood. Using a health marketing approach, we identified six general themes from the focus group sessions: initial diagnosis, likely health outcome(s), comfort and coping, symptom watch, resources, and prevention. Receiving the initial diagnosis was shocking for many parents, and they wanted to know how their child would or could be affected. They valued access to the information, follow-up visits for early detection of hearing loss and other developmental delays, and support from other parents. Parents wished to obtain this information from their pediatrician but felt that experts offered more up-to-date knowledge about prognosis, monitoring, and treatment. With more U.S. states implementing cCMV screening strategies which would lead to more infant diagnoses, it will be necessary for providers to meet parents’ expectations and communication needs. |
| first_indexed | 2024-03-10T22:39:04Z |
| format | Article |
| id | doaj.art-424e6d6169ba4438b22f152d70c64144 |
| institution | Directory Open Access Journal |
| issn | 2409-515X |
| language | English |
| last_indexed | 2024-03-10T22:39:04Z |
| publishDate | 2023-08-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | International Journal of Neonatal Screening |
| spelling | doaj.art-424e6d6169ba4438b22f152d70c641442023-11-19T11:12:29ZengMDPI AGInternational Journal of Neonatal Screening2409-515X2023-08-01934910.3390/ijns9030049Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative StudyTatiana M. Lanzieri0Mary Ann K. Hall1Ashrita Rau2Holly McBride3Danie Watson4Carol Rheaume5Gail Demmler-Harrison6Division of Viral Diseases, National Center for Immunization and Respiratory Diseases, Centers for Disease Control and Prevention, 1600 Clifton Road, Mailstop A-34, Atlanta, GA 30333, USADivision of Hospital Medicine, Emory University School of Medicine, 101 Woodruff Cir, Atlanta, GA 30322, USADivision of Viral Diseases, National Center for Immunization and Respiratory Diseases, Centers for Disease Control and Prevention, 1600 Clifton Road, Mailstop A-34, Atlanta, GA 30333, USADepartment of Pediatrics, Baylor College of Medicine, 6701 Fannin St., Houston, TX 77030, USAKirby Marketing Solutions, 3808 Villas Del Sol Ct, Tampa, FL 33609, USAKirby Marketing Solutions, 3808 Villas Del Sol Ct, Tampa, FL 33609, USADepartment of Pediatrics, Baylor College of Medicine, 6701 Fannin St., Houston, TX 77030, USAThe study objective was to identify communication messages that parents of children diagnosed with congenital cytomegalovirus (cCMV) infection reported as essential and helpful. We performed a secondary analysis of focus groups and interviews conducted with 41 parents of children with cCMV who had enrolled in a long-term follow-up cCMV study at an academic medical center. Three groups of parents who had children with cCMV participated in the study: parents with children symptomatic at birth, parents with children asymptomatic at birth who later developed sensorineural hearing loss, and parents with children asymptomatic at birth who remained asymptomatic into adulthood. Using a health marketing approach, we identified six general themes from the focus group sessions: initial diagnosis, likely health outcome(s), comfort and coping, symptom watch, resources, and prevention. Receiving the initial diagnosis was shocking for many parents, and they wanted to know how their child would or could be affected. They valued access to the information, follow-up visits for early detection of hearing loss and other developmental delays, and support from other parents. Parents wished to obtain this information from their pediatrician but felt that experts offered more up-to-date knowledge about prognosis, monitoring, and treatment. With more U.S. states implementing cCMV screening strategies which would lead to more infant diagnoses, it will be necessary for providers to meet parents’ expectations and communication needs.https://www.mdpi.com/2409-515X/9/3/49congenital cytomegalovirusnewborn screeningcommunicationsqualitative study |
| spellingShingle | Tatiana M. Lanzieri Mary Ann K. Hall Ashrita Rau Holly McBride Danie Watson Carol Rheaume Gail Demmler-Harrison Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study International Journal of Neonatal Screening congenital cytomegalovirus newborn screening communications qualitative study |
| title | Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study |
| title_full | Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study |
| title_fullStr | Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study |
| title_full_unstemmed | Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study |
| title_short | Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study |
| title_sort | parental perspectives on communication from health care providers following a newborn diagnosis of congenital cytomegalovirus infection a secondary analysis of a qualitative study |
| topic | congenital cytomegalovirus newborn screening communications qualitative study |
| url | https://www.mdpi.com/2409-515X/9/3/49 |
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