{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,30]],"date-time":"2026-07-30T09:03:27Z","timestamp":1785402207390,"version":"3.56.0"},"reference-count":34,"publisher":"MDPI AG","issue":"2","license":[{"start":{"date-parts":[[2026,5,12]],"date-time":"2026-05-12T00:00:00Z","timestamp":1778544000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000276","name":"Department of Health and Social Care","doi-asserted-by":"publisher","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}],"id":[{"id":"10.13039\/501100000276","id-type":"DOI","asserted-by":"publisher"}]},{"award":["N\/A"],"award-info":[{"award-number":["N\/A"]}],"id":[{"id":"https:\/\/ror.org\/03sbpja79","id-type":"ROR","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJNS"],"abstract":"<jats:p>Background: In 2021, the UK National Screening Committee commissioned an evaluation of newborn bloodspot screening for severe combined immunodeficiency (SCID) in England. This paper describes the experiences of parents who received an SCID or non-SCID T-cell lymphopenia (non-SCID TCL) result for their baby during the evaluation. Methods: A qualitative exploratory design was employed using semi-structured interviews with 12 parents (n = 5 who had received an SCID outcome and n = 7 who had received a non-SCID TCL following SCID NBS). Results: The impact on parents whose baby was diagnosed with SCID was complex, reflecting the experience of receiving a presymptomatic diagnosis. Parents of babies who had been diagnosed with a non-SCID TCL viewed their baby\u2019s result in terms of risk; while their baby might still have a serious immunological condition, it was not considered to be as serious as SCID. All parents reported that they valued their participation in the SCID screening evaluation. Conclusions: Support for families following a positive screening result for SCID needs to be considered. This includes tailored psychosocial support, given their experiences will not be the same as those of parents of non-screened babies with SCID.<\/jats:p>","DOI":"10.3390\/ijns12020034","type":"journal-article","created":{"date-parts":[[2026,5,12]],"date-time":"2026-05-12T12:33:37Z","timestamp":1778589217000},"page":"34","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Parents\u2019 Experiences of Receiving a Severe Combined Immunodeficiency (SCID) or Non-SCID T-Cell Lymphopenia Outcome During the Newborn Screening Evaluation in England"],"prefix":"10.3390","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1036-978X","authenticated-orcid":false,"given":"Pru","family":"Holder","sequence":"first","affiliation":[{"name":"Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King\u2019s College, London SE5 9PJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-7157-3527","authenticated-orcid":false,"given":"Chloe","family":"Musa","sequence":"additional","affiliation":[{"name":"Division of Psychology & Mental Health, Manchester Centre for Health Psychology, School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Oxford Road, Manchester M13 9PL, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1231-7817","authenticated-orcid":false,"given":"Jim B.","family":"Chilcott","sequence":"additional","affiliation":[{"name":"Sheffield Centre for Health and Related Research, University of Sheffield, Sheffield S1 4DA, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8889-6806","authenticated-orcid":false,"given":"Anju D.","family":"Keetharuth","sequence":"additional","affiliation":[{"name":"Sheffield Centre for Health and Related Research, University of Sheffield, Sheffield S1 4DA, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2326-4124","authenticated-orcid":false,"given":"Louise","family":"Moody","sequence":"additional","affiliation":[{"name":"Centre for Arts and Creative Cultures, Coventry University, Coventry CV1 5FB, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ellinor K.","family":"Olander","sequence":"additional","affiliation":[{"name":"Centre for Maternal and Baby Health Research, School of Health and Medical Sciences, City St George\u2019s, University of London, London EC1V 0HB, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3590-6542","authenticated-orcid":false,"given":"Fiona","family":"Ulph","sequence":"additional","affiliation":[{"name":"Division of Psychology & Mental Health, Manchester Centre for Health Psychology, School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Oxford Road, Manchester M13 9PL, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7334-8708","authenticated-orcid":false,"given":"Jane","family":"Chudleigh","sequence":"additional","affiliation":[{"name":"Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King\u2019s College, London SE5 9PJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2026,5,12]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","unstructured":"Kumarasamy, G., Khairiz, K., Chang, W.L., Aye, T.T., and Ali, A. 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