{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T06:21:30Z","timestamp":1792131690586,"version":"4.4.0"},"reference-count":27,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2016,4,20]],"date-time":"2016-04-20T00:00:00Z","timestamp":1461110400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2016,4,20]],"date-time":"2016-04-20T00:00:00Z","timestamp":1461110400000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000764","name":"Kings College London (GB)","doi-asserted-by":"publisher","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}],"id":[{"id":"10.13039\/501100000764","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2016,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>The clinical advantages of the newborn screening programme (NBS) in the UK are well described in the literature. However, there has been little exploration of the psychosocial impact on the family. This study followed the principles of grounded theory to explore parents\u2019 experiences of receiving the initial positive NBS result for their child with cystic fibrosis (CF) or sickle cell disease (SCD). Semi\u2010structured, qualitative interviews were conducted with 22 parents (12 mothers and 10 fathers) whose children had been diagnosed with CF or SCD via NBS and were under the age of 1 year at the time of interview. The main themes that arose from the data were; parents previous knowledge of the condition and the NBS programme, the method of delivery and parental reactions to the result, sharing the results with others, the impact on parental relationships and support strategies. Study conclusions indicate that most parents thought initial positive NBS results should be delivered by a health professional with condition specific knowledge, preferably with both parents present. Genetic counselling needs to include a focus on the impact of NBS results on parental relationships. Careful consideration needs to be given to strategies to support parents of babies who have positive NBS results both in terms of the psychological health and to assist them in sharing the diagnosis.<\/jats:p>","DOI":"10.1007\/s10897-016-9959-4","type":"journal-article","created":{"date-parts":[[2016,4,20]],"date-time":"2016-04-20T01:28:55Z","timestamp":1461115735000},"page":"1215-1226","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":61,"title":["Parents\u2019 Experiences of Receiving the Initial Positive Newborn Screening (NBS) Result for Cystic Fibrosis and Sickle Cell Disease"],"prefix":"10.1002","volume":"25","author":[{"given":"Jane","family":"Chudleigh","sequence":"first","affiliation":[{"name":"Florence Nightingale Faculty of Nursing &amp; Midwifery King's College London James Clerk Maxwell Building, 57 Waterloo Road London SE1 8WA UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Buckingham","sequence":"additional","affiliation":[{"name":"Cystic Fibrosis Paediatric Service King's College Hospital NHS Foundation Trust London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jo","family":"Dignan","sequence":"additional","affiliation":[{"name":"Cystic Fibrosis Paediatric Service King's College Hospital NHS Foundation Trust London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"O'Driscoll","sequence":"additional","affiliation":[{"name":"Department of Paediatric Haematology King's College Hospital NHS Foundation Trust London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kemi","family":"Johnson","sequence":"additional","affiliation":[{"name":"South East London Sickle Cell and Thalassaemia Centre Guy's and St. Thomas\u2019 NHS Foundation Trust London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Rees","sequence":"additional","affiliation":[{"name":"Department of Paediatric Haematology King's College Hospital NHS Foundation Trust London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hilary","family":"Wyatt","sequence":"additional","affiliation":[{"name":"Cystic Fibrosis Paediatric Service King's College Hospital NHS Foundation Trust London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alison","family":"Metcalfe","sequence":"additional","affiliation":[{"name":"Florence Nightingale Faculty of Nursing &amp; Midwifery King's College London James Clerk Maxwell Building, 57 Waterloo Road London SE1 8WA UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2016,4,20]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1258\/jrsm.2008.s18006"},{"key":"e_1_2_12_3_1","first-page":"100","volume-title":"Nursing research","author":"Barroso J.","year":"2010"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1177\/0009922812446011"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.prrv.2008.09.002"},{"key":"e_1_2_12_6_1","volume-title":"Constructing grounded theory a practical guide through qualitative analysis","author":"Charmaz K.","year":"2006"},{"key":"e_1_2_12_7_1","volume-title":"Constructing grounded theory","author":"Charmaz K.","year":"2014"},{"key":"e_1_2_12_8_1","doi-asserted-by":"crossref","unstructured":"Collins J. L. LaPean A. O'Tool F. Eskra K. L. Roedl S. J. Tluczek A. &Farrell M. H.(2012).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. doi:10.1016\/j.pec.2011.12.007.","DOI":"10.1016\/j.pec.2011.12.007"},{"key":"e_1_2_12_9_1","volume-title":"Basics of qualitative research","author":"Corbin J.","year":"2008"},{"key":"e_1_2_12_10_1","unstructured":"Daniel D. &Henthorn J.(2012).Sickle Cell and Thalassaemia Handbook for Laboratories. Retrieved from London:https:\/\/www.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/398702\/LabHandbook2012Edition3v2.pdf."},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2010-3413"},{"key":"e_1_2_12_12_1","volume-title":"The NHS plan. A plan for investment. A plan for reform","author":"DoH","year":"2000"},{"key":"e_1_2_12_13_1","unstructured":"Green A. Isherwood D. Pollitt R. Griffiths P. Griffiths W. Goddard P. &Scott E.(2014).A Laboratory Guide to Newborn Screening in the UK for Cystic Fibrosis. Retrieved from London:https:\/\/www.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/397726\/Cystic_Fibrosis_Lab_Guide_February_2014_v1.0_12_.pdf."},{"key":"e_1_2_12_14_1","first-page":"CD003427","article-title":"Prophylactic antibiotics for preventing pneumococcal infection in children with sickle cell disease","volume":"11","author":"Hirst C.","year":"2014","journal-title":"Cochrane Database of Systematic Reviews"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.3310\/hta13570"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e31821435f7"},{"key":"e_1_2_12_17_1","volume-title":"On death and dying","author":"K\u00fcbler\u2010Ross E.","year":"1969"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1080\/13557858.2010.541903"},{"key":"e_1_2_12_19_1","unstructured":"Morgan T.(2014).Data Collection and Performance Analysis Report Newborn Blood Spot Screening in the UK 2012\u201313. 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