{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T14:10:05Z","timestamp":1790604605715,"version":"4.1.0"},"reference-count":31,"publisher":"Springer Science and Business Media LLC","issue":"2","license":[{"start":{"date-parts":[[2026,1,9]],"date-time":"2026-01-09T00:00:00Z","timestamp":1767916800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"},{"start":{"date-parts":[[2026,1,9]],"date-time":"2026-01-09T00:00:00Z","timestamp":1767916800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"}],"funder":[{"DOI":"10.13039\/100014369","name":"Organon BioSciences","doi-asserted-by":"publisher","award":["Organon BioSciences"],"award-info":[{"award-number":["Organon BioSciences"]}],"id":[{"id":"10.13039\/100014369","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2026,2]]},"DOI":"10.1007\/s11136-025-04107-6","type":"journal-article","created":{"date-parts":[[2026,1,9]],"date-time":"2026-01-09T08:55:44Z","timestamp":1767948944000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Lived experience of spontaneous preterm birth following spontaneous preterm labor: the primary caregiver\u2019s perspective"],"prefix":"10.1007","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3848-0113","authenticated-orcid":false,"given":"Elizabeth","family":"Gargon","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1026-7265","authenticated-orcid":false,"given":"Anya","family":"Roberts","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4291-931X","authenticated-orcid":false,"given":"Laura","family":"Grant","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4111-4181","authenticated-orcid":false,"given":"Rosie","family":"Sharp","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-7475-7446","authenticated-orcid":false,"given":"Damien J.","family":"Croft","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2337-1336","authenticated-orcid":false,"given":"Edith Roset","family":"Bahmanyar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8504-6715","authenticated-orcid":false,"given":"Kara M.","family":"Rood","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0586-3019","authenticated-orcid":false,"given":"Vanessa Perez","family":"Patel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,1,9]]},"reference":[{"issue":"9606","key":"4107_CR1","doi-asserted-by":"publisher","first-page":"75","DOI":"10.1016\/S0140-6736(08)60074-4","volume":"371","author":"RL Goldenberg","year":"2008","unstructured":"Goldenberg, R. L., Culhane, J. F., Iams, J. D., & Romero, R. (2008). Epidemiology and causes of preterm birth. The Lancet, 371(9606), 75\u201384. https:\/\/doi.org\/10.1016\/S0140-6736(08)60074-4","journal-title":"The Lancet"},{"issue":"9608","key":"4107_CR2","doi-asserted-by":"publisher","first-page":"261","DOI":"10.1016\/S0140-6736(08)60136-1","volume":"371","author":"S Saigal","year":"2008","unstructured":"Saigal, S., & Doyle, L. W. (2008). An overview of mortality and sequelae of preterm birth from infancy to adulthood. The Lancet, 371(9608), 261\u2013269. https:\/\/doi.org\/10.1016\/S0140-6736(08)60136-1","journal-title":"The Lancet"},{"issue":"1","key":"4107_CR3","doi-asserted-by":"publisher","first-page":"25","DOI":"10.1136\/jech-2023-220591","volume":"78","author":"V Benhammou","year":"2024","unstructured":"Benhammou, V., Marchand-Martin, L., Pierrat, V., Charkaluk, M. L., Romito, P., Kaminski, M., Ancel, P. Y., & Saurel-Cubizolles, M. J. (2024). Maternal health-related quality of life at 1 year after a preterm birth: Role of socioeconomic status at birth. Journal of Epidemiology and Community Health, 78(1), 25\u201332. https:\/\/doi.org\/10.1136\/jech-2023-220591","journal-title":"Journal of Epidemiology and Community Health"},{"key":"4107_CR4","doi-asserted-by":"publisher","first-page":"684576","DOI":"10.3389\/fped.2021.684576","volume":"9","author":"E Mautner","year":"2022","unstructured":"Mautner, E., Stern, C., Avian, A., Deutsch, M., Sch\u00f6ll, W., & Greimel, E. (2022). Neonates in the intensive care unit: Maternal health-related quality of life and depression after term and preterm births. Frontiers in Pediatrics, 9, 684576. https:\/\/doi.org\/10.3389\/fped.2021.684576","journal-title":"Frontiers in Pediatrics"},{"issue":"1","key":"4107_CR5","doi-asserted-by":"publisher","first-page":"93","DOI":"10.1007\/s40273-022-01201-2","volume":"41","author":"C Bolbocean","year":"2023","unstructured":"Bolbocean, C., van der Pal, S., van Buuren, S., Anderson, P. J., Bartmann, P., Baumann, N., Cheong, J. L. Y., Darlow, B. A., Doyle, L. W., & Evensen, K. A. I (2023). Health-related quality-of-life outcomes of very preterm or very low birth weight adults: Evidence from an individual participant data meta-analysis. Pharmacoeconomics, 41(1), 93\u2013105. https:\/\/doi.org\/10.1007\/s40273-022-01201-2","journal-title":"Pharmacoeconomics"},{"issue":"10","key":"4107_CR6","doi-asserted-by":"publisher","first-page":"1974","DOI":"10.1111\/apa.15249","volume":"109","author":"S van Der Pal","year":"2020","unstructured":"van Der Pal, S., Steinhof, M., Grevinga, M., Wolke, D., & Verrips, G. (2020). Quality of life of adults born very preterm or very low birth weight: A systematic review. Acta Paediatrica, 109(10), 1974\u20131988. https:\/\/doi.org\/10.1111\/apa.15249","journal-title":"Acta Paediatrica"},{"issue":"149","key":"4107_CR7","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s12884-025-07166-2","volume":"25","author":"JM Costello","year":"2025","unstructured":"Costello, J. M., Takasuka, H., Roger, J., Yin, O., Tang, A., Oskotsky, T., Sirota, M., & Capra, J. A. (2025). Pre-conception clinical risk factors differ between spontaneous and indicated preterm birth in a densely phenotyped EHR cohort. BioMed Central Pregnancy and Childbirth, 25(149), 1\u201313. https:\/\/doi.org\/10.1186\/s12884-025-07166-2","journal-title":"BioMed Central Pregnancy and Childbirth"},{"key":"4107_CR8","doi-asserted-by":"publisher","first-page":"1015622","DOI":"10.3389\/fendo.2022.1015622","volume":"13","author":"MS Vidal Jr","year":"2022","unstructured":"Vidal Jr, M. S., Lintao, R. C. V., Severino, M. E. L., Tantengco, O. A. G., & Menon, R. (2022). Spontaneous preterm birth: Involvement of multiple feto-maternal tissues and organ systems, differing mechanisms, and pathways. Frontiers in Endocrinology, 13, 1015622. https:\/\/doi.org\/10.3389\/fendo.2022.1015622","journal-title":"Frontiers in Endocrinology"},{"issue":"4","key":"4107_CR9","first-page":"159","volume":"23","author":"S James","year":"2018","unstructured":"James, S., Rall, N., & Kerspay, S. R. (2018). Mothers\u2019 experiences of premature birth. African Journal for Physical Activity and Health Sciences, 23(4), 159\u2013171. https:\/\/hdl.handle.net\/10520\/EJC-c20925c1a","journal-title":"African Journal for Physical Activity and Health Sciences"},{"key":"4107_CR10","unstructured":"Bronzo, A. (2012). Narrative creation as an aspect of coping in response to preterm delivery and hospitalization [Unpublished doctoral dissertation]. The Wright Institute."},{"key":"4107_CR11","unstructured":"US Food and Drug Administration. (2022). Patient-focused drug development: selecting, developing, or modifying fit-for-purpose clinical outcome assessments - draft guidance for industry, food and drug administration staff, and other stakeholders. US Food and Drug Administration. https:\/\/fda.gov\/media\/159500\/download"},{"key":"4107_CR12","doi-asserted-by":"publisher","first-page":"64","DOI":"10.21832\/9781845418281-008","volume-title":"Research paradigm considerations for emerging scholars","author":"J Pilarska","year":"2021","unstructured":"Pilarska, J. (2021). The constructivist paradigm and phenomenological qualitative research design. In A. Pabel, J. Pryce, & A. Anderson (Eds.), Research paradigm considerations for emerging scholars (pp. 64\u201383). Channel View Publications Ltd. https:\/\/doi.org\/10.21832\/9781845418281-008"},{"issue":"7","key":"4107_CR13","doi-asserted-by":"publisher","first-page":"645","DOI":"10.1007\/s40273-016-0389-9","volume":"34","author":"M Karimi","year":"2016","unstructured":"Karimi, M. (2016). J. (Ed.), Health, health-related quality of life, and quality of life: What is the difference? Pharmacoeconomics 34 7 645\u2013649 https:\/\/doi.org\/10.1007\/s40273-016-0389-9.","journal-title":"Pharmacoeconomics"},{"issue":"13","key":"4107_CR14","doi-asserted-by":"publisher","first-page":"835","DOI":"10.1056\/NEJM199603283341306","volume":"334","author":"MA Testa","year":"1996","unstructured":"Testa, M. A., & Simonson, D. C. (1996). Assessment of quality-of-life outcomes. The New England Journal of Medicine, 334(13), 835\u2013840. https:\/\/doi.org\/10.1056\/NEJM199603283341306","journal-title":"The New England Journal of Medicine"},{"issue":"1","key":"4107_CR15","doi-asserted-by":"publisher","first-page":"59","DOI":"10.1001\/jama.1995.03520250075037","volume":"273","author":"IB Wilson","year":"1995","unstructured":"Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life: A conceptual model of patient outcomes. The Journal of the American Medical Association, 273(1), 59\u201365. https:\/\/doi.org\/10.1001\/jama.1995.03520250075037","journal-title":"The Journal of the American Medical Association"},{"issue":"1","key":"4107_CR16","doi-asserted-by":"publisher","first-page":"1","DOI":"10.11648\/j.ajtas.20160501.11","volume":"5","author":"I Etikan","year":"2016","unstructured":"Etikan, I., Musa, S. A., & Alkassim, R. S. (2016). Comparison of convenience sampling and purposive sampling. American Journal of Theoretical and Applied Statistics, 5(1), 1\u20134. https:\/\/doi.org\/10.11648\/j.ajtas.20160501.11","journal-title":"American Journal of Theoretical and Applied Statistics"},{"issue":"1","key":"4107_CR17","first-page":"1","volume":"71","author":"MJK Osterman","year":"2023","unstructured":"Osterman, M. J. K., Hamilton, B. E., Martin, J. A., Driscoll, A. K., & Valenzuela, C. P. (2023). Births: Final data for 2021. National Vital Statistics Reports, 71(1), 1\u201353. https:\/\/www.cdc.gov\/nchs\/\/data\/nvsr\/nvsr72\/nvsr72-01.pdf","journal-title":"National Vital Statistics Reports"},{"key":"4107_CR18","unstructured":"US Food and Drug Administration. (2022). Patient-focused drug development: Methods to identify what is important to patients\u2014guidance for industry, food and drug administration staff, and other stakeholders. US Food and Drug Administration. https:\/\/fda.gov\/media\/131230\/download"},{"key":"4107_CR19","unstructured":"ATLAS.ti Scientific Software Development GmbH (2022). ATLAS.ti Windows software (Version 22.2.5.0) [Computer software]. https:\/\/atlasti.com\/atlas-ti-desktop"},{"issue":"5","key":"4107_CR20","doi-asserted-by":"publisher","first-page":"1137","DOI":"10.1093\/ije\/dyq191","volume":"39","author":"C Spearman","year":"2010","unstructured":"Spearman, C. (2010). The proof and measurement of association between two things. International Journal of Epidemiology, 39(5), 1137\u20131150. https:\/\/doi.org\/10.1093\/ije\/dyq191","journal-title":"International Journal of Epidemiology"},{"issue":"3","key":"4107_CR21","doi-asserted-by":"publisher","first-page":"273","DOI":"10.1037\/met0000079","volume":"21","author":"JCF de Winter","year":"2016","unstructured":"de Winter, J. C. F., Gosling, S. D., & Potter, J. P. (2016). Comparing the pearson and spearman correlation coefficients across distributions and sample sizes: A tutorial using simulations and empirical data. Psychological Methods, 21(3), 273\u2013290. https:\/\/doi.org\/10.1037\/met0000079","journal-title":"Psychological Methods"},{"key":"4107_CR22","volume-title":"Statistics without maths for psychology","author":"CP Dancey","year":"2007","unstructured":"Dancey, C. P., & Reidy, J. (2007). Statistics without maths for psychology. Pearson Education."},{"issue":"1","key":"4107_CR23","doi-asserted-by":"publisher","first-page":"182","DOI":"10.1186\/s12955-021-01811-y","volume":"19","author":"H Wu","year":"2021","unstructured":"Wu, H., Sun, W., Chen, H., Wu, Y., Ding, W., Liang, S., Huang, X., Chen, H., Zeng, Q., Li, Z., Xiong, P., Huang, J., Akinwunmi, B., Zhang, C. J. P., & Ming, W. K. (2021). Health-related quality of life in different trimesters during pregnancy. Health and Quality of Life Outcomes, 19(1), 182. https:\/\/doi.org\/10.1186\/s12955-021-01811-y","journal-title":"Health and Quality of Life Outcomes"},{"issue":"4","key":"4107_CR24","doi-asserted-by":"publisher","first-page":"604","DOI":"10.5964\/ejop.v12i4.1093","volume":"12","author":"C Ionio","year":"2016","unstructured":"Ionio, C., Colombo, C., Brazzoduro, V., Mascheroni, E., Confalonieri, E., Castoldi, F., & Lista, G. (2016). Mothers and fathers in NICU: The impact of preterm birth on parental distress. Europe\u2019s Journal of Psychology, 12(4), 604\u2013621. https:\/\/doi.org\/10.5964\/ejop.v12i4.1093","journal-title":"Europe\u2019s Journal of Psychology"},{"issue":"1","key":"4107_CR25","doi-asserted-by":"publisher","first-page":"148","DOI":"10.1002\/wps.20936","volume":"21","author":"K Treyvaud","year":"2022","unstructured":"Treyvaud, K., & Brown, S. J. (2022). Mental health of children and parents after very preterm birth. World Psychiatry, 21(1), 148\u2013149. https:\/\/doi.org\/10.1002\/wps.20936","journal-title":"World Psychiatry"},{"issue":"12","key":"4107_CR26","doi-asserted-by":"publisher","first-page":"1158","DOI":"10.3390\/children8121158","volume":"8","author":"R Kamity","year":"2021","unstructured":"Kamity, R., Kapavarapu, P. K., & Chandel, A. (2021). Feeding problems and long-term outcomes in preterm infants - a systematic approach to evaluation and management. Children, 8(12), 1158. https:\/\/doi.org\/10.3390\/children8121158","journal-title":"Children"},{"issue":"9","key":"4107_CR27","doi-asserted-by":"publisher","first-page":"485","DOI":"10.1080\/17474124.2024.2407116","volume":"18","author":"Y Vandenplas","year":"2024","unstructured":"Vandenplas, Y., & Huysentruyt, K. (2024). Gastroesophageal reflux disease in preterm infants: Unmet needs. Expert Review of Gastroenterology & Hepatology, 18(9), 485\u2013491. https:\/\/doi.org\/10.1080\/17474124.2024.2407116","journal-title":"Expert Review of Gastroenterology & Hepatology"},{"key":"4107_CR28","doi-asserted-by":"publisher","first-page":"1","DOI":"10.12688\/gatesopenres.12756.1","volume":"1","author":"M Sudhinaraset","year":"2017","unstructured":"Sudhinaraset, M., Afulani, P., Diamond-Smith, N., Bhattacharyya, S., Donnay, F., & Montagu, D. (2017). Advancing a conceptual model to improve maternal health quality: The person-centered care framework for reproductive health equity. Gates Open Research, 1, 1. https:\/\/doi.org\/10.12688\/gatesopenres.12756.1","journal-title":"Gates Open Research"},{"key":"4107_CR29","doi-asserted-by":"publisher","first-page":"100051","DOI":"10.1016\/j.glmedi.2024.100051","volume":"2","author":"SK Ahmed","year":"2024","unstructured":"Ahmed, S. K. (2024). The pillars of trustworthiness in qualitative research. Journal of Medicine Surgery and Public Health, 2, 100051. https:\/\/doi.org\/10.1016\/j.glmedi.2024.100051","journal-title":"Journal of Medicine Surgery and Public Health"},{"issue":"66","key":"4107_CR30","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s40814-021-00809-z","volume":"7","author":"O Perra","year":"2021","unstructured":"Perra, O., Wass, S., McNulty, A., Sweet, D., Papageorgiou, K. A., Johnston, M., Bilello, D., Patterson, A., & Alderdice, F. (2021). Very preterm infants engage in an intervention to train their control of attention: Results from the feasibility study of the attention control training (ACT) randomised trial. Pilot and Feasibility Studies, 7(66), 1\u201323. https:\/\/doi.org\/10.1186\/s40814-021-00809-z","journal-title":"Pilot and Feasibility Studies"},{"key":"4107_CR31","unstructured":"Duke-Margolis Institute for Health Policy & US Food and Drug Administration. (2024). Advancing drug development for the prevention of spontaneous preterm birth. Duke-Margolis Institute for Health Policy. https:\/\/healthpolicy.duke.edu\/sites\/default\/files\/2024-01\/Preterm%20Birth%20Workshop%20Slide%20Deck.pdf"}],"container-title":["Quality of Life Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-025-04107-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11136-025-04107-6","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-025-04107-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,3,8]],"date-time":"2026-03-08T06:59:17Z","timestamp":1772953157000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11136-025-04107-6"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,1,9]]},"references-count":31,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2026,2]]}},"alternative-id":["4107"],"URL":"https:\/\/doi.org\/10.1007\/s11136-025-04107-6","relation":{},"ISSN":["0962-9343","1573-2649"],"issn-type":[{"value":"0962-9343","type":"print"},{"value":"1573-2649","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,1,9]]},"assertion":[{"value":"6 May 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"11 November 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"9 January 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"D.J.C., E.R.B., and V.P.P. are employees of Organon & Co., Jersey City, NJ. K.M.R. is an employee of the Ohio State University College of Medicine, Columbus, OH and a consultant for Organon & Co., Jersey City, NJ. E.G., A.R., L.G., and R.S. are employees of Adelphi Values Patient-Centered Outcomes, Bollington, Cheshire. The authors report no competing interests.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"Ethical approval was provided by WCG IRB (tracking identification: 20233052; approved 6 July 2023). The study was developed and conducted in accordance with the Declaration of Helsinki 1964 and its later amendments, and Good Clinical Practice guidelines. Privacy rights of human subjects were observed, and caregivers\u2019 personal data were handled in accordance with the Health Insurance Portability and Accountability Act legislation and European General Data Protection Regulation.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"All caregivers provided written informed consent to participate in the study.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"The authors affirm that caregivers provided informed consent for the publication of study results with their identifying information removed.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}],"article-number":"35"}}