{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T05:11:10Z","timestamp":1790745070589,"version":"4.1.0"},"reference-count":24,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2013,1,4]],"date-time":"2013-01-04T00:00:00Z","timestamp":1357257600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Acta Paediatrica"],"published-print":{"date-parts":[[2013,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aim<\/jats:title><jats:p>To understand parents'\/carers' experiences of support received following their child's diagnosis of invasive meningococcal serogroup <jats:styled-content style=\"fixed-case\">B<\/jats:styled-content> disease (<jats:styled-content style=\"fixed-case\">M<\/jats:styled-content>enB).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Structured interviews with parents\/carers of 244 survivors of <jats:styled-content style=\"fixed-case\">M<\/jats:styled-content>en<jats:styled-content style=\"fixed-case\">B<\/jats:styled-content> disease in childhood, drawn from a population\u2010based case\u2010control study.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Responses indicated that optimal support should encompass the whole treatment pathway, beginning with fast and accurate recognition of <jats:styled-content style=\"fixed-case\">M<\/jats:styled-content>en<jats:styled-content style=\"fixed-case\">B<\/jats:styled-content> by clinicians, followed by the provision of information about the symptoms and possible sequelae of <jats:styled-content style=\"fixed-case\">M<\/jats:styled-content>en<jats:styled-content style=\"fixed-case\">B<\/jats:styled-content>, better communication about the treatment process and disease progression and greater follow\u2010up care.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Parents' experience of support following their child's diagnosis of <jats:styled-content style=\"fixed-case\">M<\/jats:styled-content>en<jats:styled-content style=\"fixed-case\">B<\/jats:styled-content> could be significantly enhanced through better education and enhanced knowledge in health care professionals, improved access to information about short\u2010 and long\u2010term sequelae and easier access to follow\u2010up support and advice. Much of the data generated pertained to situations and processes common to most serious illnesses occurring in children and therefore it is likely that these findings pose wider questions about support and communication in paediatrics.<\/jats:p><\/jats:sec>","DOI":"10.1111\/apa.12112","type":"journal-article","created":{"date-parts":[[2012,12,4]],"date-time":"2012-12-04T06:11:11Z","timestamp":1354601471000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":12,"title":["Parents' experiences of support during and after their child's diagnosis of <scp>M<\/scp>eningococcal <scp>D<\/scp>isease"],"prefix":"10.1111","volume":"102","author":[{"given":"Faye","family":"Sweeney","sequence":"first","affiliation":[{"name":"General and Adolescent Paediatrics Unit UCL Institute of Child Health London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Russell","family":"M Viner","sequence":"additional","affiliation":[{"name":"General and Adolescent Paediatrics Unit UCL Institute of Child Health London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert","family":"Booy","sequence":"additional","affiliation":[{"name":"National Centre for Immunisation Research &amp; Surveillance (NCIRS) The University of Sydney Sydney NSW Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deborah","family":"Christie","sequence":"additional","affiliation":[{"name":"General and Adolescent Paediatrics Unit UCL Institute of Child Health London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2013,1,4]]},"reference":[{"key":"e_1_2_9_2_1","unstructured":"Health Protection Agency.Meningococcal Reference Unit isolates of Neisseria menengitidis: England and Wales by serogroup & epidemiological year. 1998\/99\u20102009\/10. Available at:http:\/\/www.hpa.org.uk\/web\/HPAweb&HPAwebStandard\/HPAweb_C\/1234859711901 (accessed on January 29 2012)."},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1086\/520303"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.PCC.0000144705.81825.EE"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.313.7063.983"},{"key":"e_1_2_9_6_1","volume-title":"Children First: A Study of Hospital Services","author":"Audit Commission","year":"1993"},{"key":"e_1_2_9_7_1","volume-title":"Welfare of Children And Young People in Hospital","author":"Department of Health","year":"1991"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.1999.00906.x"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.2001.02013.x"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(12)70180-1"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1177\/1046496494254008"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781412983488"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nedt.2003.10.001"},{"key":"e_1_2_9_14_1","doi-asserted-by":"crossref","first-page":"1277","DOI":"10.1177\/1049732305276687","article-title":"Three approaches to qualitative content analysis","volume":"15","author":"Hsiu\u2010Fang H","year":"2005","journal-title":"Qual Health Res"},{"key":"e_1_2_9_15_1","doi-asserted-by":"crossref","first-page":"28","DOI":"10.1027\/1015-5759.22.1.28","article-title":"On the pragmatics of qualitative assessment: designing the process for content analysis","volume":"22","author":"Schilling J","year":"2006","journal-title":"Eur J Psychol Assess"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/0147-1767(85)90062-8"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2008-0581"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(06)67932-4"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.3109\/13814789509160750"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.316.7127.276"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1136\/emj.15.5.298"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.1999.00987.x"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2010.05574.x"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.1997.00387_26_5.x"},{"key":"e_1_2_9_25_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.313.7063.987"}],"container-title":["Acta Paediatrica"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fapa.12112","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/apa.12112","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,11,22]],"date-time":"2023-11-22T08:07:52Z","timestamp":1700640472000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/apa.12112"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2013,1,4]]},"references-count":24,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2013,3]]}},"alternative-id":["10.1111\/apa.12112"],"URL":"https:\/\/doi.org\/10.1111\/apa.12112","archive":["Portico"],"relation":{},"ISSN":["0803-5253","1651-2227"],"issn-type":[{"value":"0803-5253","type":"print"},{"value":"1651-2227","type":"electronic"}],"subject":[],"published":{"date-parts":[[2013,1,4]]},"assertion":[{"value":"2012-08-03","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2012-11-28","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2013-01-04","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}