{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,23]],"date-time":"2026-04-23T05:30:46Z","timestamp":1776922246996,"version":"3.51.2"},"reference-count":48,"publisher":"MDPI AG","issue":"6","license":[{"start":{"date-parts":[[2023,6,12]],"date-time":"2023-06-12T00:00:00Z","timestamp":1686528000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Children"],"abstract":"<jats:p>The changes deriving from the birth of a child with a congenital anomaly (CA) or cerebral palsy (CP) imply, in many cases, an increased interaction with health services. A cross-sectional descriptive study was conducted with a convenience sample of parents of children diagnosed with four groups of CA (severe heart anomalies, spina bifida, orofacial clefts, and Down syndrome) and\/or CP. A semistructured online questionnaire to be answered by parents was sent by web link to focal points of five parent associations and professional institutions. Data were analyzed through thematic content analysis (open-ended questions) and descriptive analysis (closed-ended questions). The results indicate consistency of responses of parents of children diagnosed with different conditions, namely with respect to the perception of health services and professionals. Closed and open-ended responses indicated three main topics in the interaction between health services and parenthood: information, coordinated and integrated responses, and support. The less positive outcomes suggest unmet information needs, while positive aspects include confidence in the care provided and the \u201ctraining\u201d received from health professionals.<\/jats:p>","DOI":"10.3390\/children10061051","type":"journal-article","created":{"date-parts":[[2023,6,13]],"date-time":"2023-06-13T01:35:30Z","timestamp":1686620130000},"page":"1051","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services"],"prefix":"10.3390","volume":"10","author":[{"given":"Ana Jo\u00e3o","family":"Santos","sequence":"first","affiliation":[{"name":"Department of Epidemiology, National Health Institute Doutor Ricardo Jorge, 1649-016 Lisboa, Portugal"},{"name":"Comprehensive Health Research Center, National School of Public Health (ENSP), University of Lisbon, 1600-560 Lisboa, Portugal"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Paula","family":"Braz","sequence":"additional","affiliation":[{"name":"Department of Epidemiology, National Health Institute Doutor Ricardo Jorge, 1649-016 Lisboa, Portugal"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Teresa","family":"Folha","sequence":"additional","affiliation":[{"name":"Department of Epidemiology, National Health Institute Doutor Ricardo Jorge, 1649-016 Lisboa, Portugal"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ausenda","family":"Machado","sequence":"additional","affiliation":[{"name":"Department of Epidemiology, National Health Institute Doutor Ricardo Jorge, 1649-016 Lisboa, Portugal"},{"name":"Comprehensive Health Research Center, National School of Public Health (ENSP), University of Lisbon, 1600-560 Lisboa, Portugal"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carlos","family":"Matias-Dias","sequence":"additional","affiliation":[{"name":"Department of Epidemiology, National Health Institute Doutor Ricardo Jorge, 1649-016 Lisboa, Portugal"},{"name":"Comprehensive Health Research Center, National School of Public Health (ENSP), University of Lisbon, 1600-560 Lisboa, Portugal"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2023,6,12]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"795","DOI":"10.1542\/peds.2011-1467","article-title":"Parent-Provider-Community Partnerships: Optimizing Outcomes for Children with Disabilities","volume":"128","author":"Murphy","year":"2011","journal-title":"Pediatrics"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"3465","DOI":"10.3390\/ijerph10083465","article-title":"Insights from Parents about Caring for a Child with Birth Defects","volume":"10","author":"Lemacks","year":"2013","journal-title":"Int. J. Environ. Res. Public Health"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"137","DOI":"10.1542\/peds.102.1.137","article-title":"A New Definition of Children with Special Health Care Needs","volume":"102","author":"McPherson","year":"1998","journal-title":"Pediatrics"},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"5","DOI":"10.1093\/jpepsy\/23.1.5","article-title":"Relationship of parental psychological distress to consequences of chronic health conditions in children","volume":"23","author":"Silver","year":"1998","journal-title":"J. Pediatr. Psychol."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1046\/j.1365-2214.1999.00107.x","article-title":"Adaptation of parents in relation to their 6-month-old infant\u2019s type of disability","volume":"25","author":"Pelchat","year":"1999","journal-title":"Child Care Health Dev."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"267","DOI":"10.1352\/0895-8017(1997)102<0267:FAMOSC>2.0.CO;2","article-title":"Fathers and mothers of school-age children with developmental disabilities: Parental stress, family functioning, and social support\u2013PubMed","volume":"102","author":"Dyson","year":"1997","journal-title":"Am. J. Ment. Retard."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"810","DOI":"10.1111\/jir.12093","article-title":"Openness and avoidance\u2014A longitudinal study of fathers of children with intellectual disability","volume":"58","author":"Broberg","year":"2014","journal-title":"J. Intellect. Disabil. Res."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"176","DOI":"10.1046\/j.1471-6712.2003.00215.x","article-title":"An examination of the needs of parents of hospitalized children: Comparing parents\u2019 and staff\u2019s perceptions","volume":"17","author":"Shields","year":"2003","journal-title":"Scand. J. Caring Sci."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"140","DOI":"10.1053\/jpdn.2002.123020","article-title":"Observed parental needs during their child\u2019s hospitalization","volume":"17","author":"Runesson","year":"2002","journal-title":"J. Pediatr. Nurs."},{"key":"ref_10","doi-asserted-by":"crossref","unstructured":"Bradshaw, S., Bem, D., Shaw, K., Taylor, B., Chiswell, C., Salama, M., Bassett, E., Kaur, G., and Cummins, C. (2019). Improving health, wellbeing and parenting skills in parents of children with special health care needs and medical complexity\u2014A scoping review. BMC Pediatr., 19.","DOI":"10.1186\/s12887-019-1648-7"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"320","DOI":"10.1080\/02646838.2011.634398","article-title":"Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly","volume":"29","author":"Fonseca","year":"2011","journal-title":"J. Reprod. Infant Psychol."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"16","DOI":"10.21767\/2471-8505.100075","article-title":"Coping Patterns in a Mother of a Child with Multiple Congenital Anomalies: A Case Study","volume":"3","author":"Okuyama","year":"2017","journal-title":"J. Intensiv. Crit. Care"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1177\/1074840715616603","article-title":"Walking the \u201cEmotional Tightrope\u201d From Pregnancy to Parenthood: Understanding Parental Motivation to Manage Health Care and Distress After a Fetal Diagnosis of Complex Congenital Heart Disease","volume":"22","author":"McKechnie","year":"2016","journal-title":"J. Fam. Nurs."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"49","DOI":"10.3109\/01460869109009750","article-title":"A Study of the Needs of Parents of Hospitalized 2- to 6-Year-Old Children","volume":"14","year":"1991","journal-title":"Issues Compr. Pediatr. Nurs."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"95","DOI":"10.1111\/j.1471-6712.1995.tb00394.x","article-title":"Perceived Importance of Needs Expressed by Parents of Hospitalized Two- to Six-Year-Olds","volume":"9","year":"1995","journal-title":"Scand. J. Caring Sci."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"249","DOI":"10.1097\/00004703-200606000-00012","article-title":"Family functioning in children and adolescents with spina bifida: An evidence-based review of research and interventions","volume":"27","author":"Holmbeck","year":"2006","journal-title":"J. Dev. Behav. Pediatr."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"1181","DOI":"10.1136\/archdischild-2018-316733","article-title":"Epidemiology of congenital cerebral anomalies in Europe: A multicentre, population-based EUROCAT study","volume":"104","author":"Morris","year":"2019","journal-title":"Arch. Dis. Child."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"323","DOI":"10.1111\/dmcn.12262","article-title":"What constitutes cerebral palsy in the twenty-first century?","volume":"56","author":"Badawi","year":"2014","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"110","DOI":"10.12968\/bjon.1996.5.2.110","article-title":"Parent participation 2: Findings and their implications for practice","volume":"5","author":"Neill","year":"1996","journal-title":"Br. J. Nurs."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"1694","DOI":"10.1177\/1049732312458371","article-title":"Preparing Heart and Mind Following Prenatal Diagnosis of Complex Congenital Heart Defect","volume":"22","author":"McKechnie","year":"2012","journal-title":"Qual. Health Res."},{"key":"ref_21","first-page":"1","article-title":"Portugal: Health Systems in Transition","volume":"30","author":"Augusto","year":"2017","journal-title":"Eur. Obs. Health Syst. Policies"},{"key":"ref_22","unstructured":"Instituto Nacional de Estat\u00edstica (2023, May 16). Unprecedented Decline in the Number of Health Care Acts Performed in 2020. Press Release: Destaque. Available online: https:\/\/www.google.com\/url?sa=i&rct=j&q=&esrc=s&source=web&cd=&ved=0CAIQw7AJahcKEwj4iaHzrrP_AhUAAAAAHQAAAAAQAg&url=https%3A%2F%2Fwww.ine.pt%2Fngt_server%2Fattachfileu.jsp%3Flook_parentBoui%3D554709627%26att_display%3Dn%26att_download%3Dy&psig=AOvVaw2fzGP9EB1wJ7lXR7E6U-tz&ust=1686303147119075."},{"key":"ref_23","unstructured":"European Commission (2023, May 28). State of Health in the EU Portugal Country Health Profile. OECD European Observatory. Available online: https:\/\/health.ec.europa.eu\/system\/files\/2021-12\/2021_chp_pt_english.pdf."},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"S142","DOI":"10.1016\/j.jpeds.2016.04.051","article-title":"Child Health in Portugal","volume":"177","author":"Bandeira","year":"2016","journal-title":"J. Pediatr."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"488","DOI":"10.20344\/amp.10437","article-title":"Hospital inpatient use in mainland Portugal by children with complex chronic conditions (2011\u20132015)","volume":"32","author":"Lacerda","year":"2019","journal-title":"Acta Med. Port."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"221","DOI":"10.1590\/S0021-75572010000300010","article-title":"Valida\u00e7\u00e3o e An\u00e1lise da Precis\u00e3o da Vers\u00e3o em Portugu\u00eas do Needs of Parents Questionnaire","volume":"86","author":"Ferreira","year":"2010","journal-title":"J. Pediatr."},{"key":"ref_27","unstructured":"Patton, M.Q. (2002). Qualitative Research: Evaluation Methods, Sage Publications."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"160940691773384","DOI":"10.1177\/1609406917733847","article-title":"Thematic Analysis: Striving to Meet the Trustworthiness Criteria","volume":"16","author":"Nowell","year":"2017","journal-title":"Int. J. Qual. Methods"},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"e1645","DOI":"10.1542\/peds.2011-2219","article-title":"Providing a Primary Care Medical Home for Children and Youth with Spina Bifida","volume":"128","author":"Burke","year":"2011","journal-title":"Pediatrics"},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"33","DOI":"10.1007\/s40272-018-0322-0","article-title":"Clinical Features and Treatment of Down Syndrome Arthropathy: Experience from Two US Tertiary Hospitals","volume":"21","author":"Jones","year":"2019","journal-title":"Pediatr. Drugs"},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1177\/0884217503261092","article-title":"Parents\u2019 Perspectives on Decision Making After Antenatal Diagnosis of Congenital Heart Disease","volume":"33","author":"Rempel","year":"2004","journal-title":"J. Obstet. Gynecol. Neonatal Nurs."},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"53","DOI":"10.3389\/fped.2013.00053","article-title":"Cleft Lip\u2014A Comprehensive Review","volume":"1","author":"Shkoukani","year":"2013","journal-title":"Front. Pediatr."},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"101","DOI":"10.1177\/1367493503007002004","article-title":"Caring for a Child with Spina Bifida: Understanding the Child and Carer","volume":"7","author":"Zipitis","year":"2003","journal-title":"J. Child Health Care"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"267","DOI":"10.1007\/s00383-005-1631-2","article-title":"Parents\u2019 informational needs at the birth of a baby with a surgically correctable anomaly","volume":"22","author":"Aite","year":"2006","journal-title":"Pediatr. Surg. Int."},{"key":"ref_35","doi-asserted-by":"crossref","first-page":"232","DOI":"10.1002\/ajmg.c.30107","article-title":"Uncertainty and perceived personal control among parents of children with rare chromosome conditions: The role of genetic counseling","volume":"142","author":"Lipinski","year":"2006","journal-title":"Am. J. Med. Genet. Part C Semin. Med. Genet."},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"111","DOI":"10.1177\/1367493512473856","article-title":"Parenting an infant with a congenital anomaly: An exploratory study on patterns of adjustment from diagnosis to six months post birth","volume":"18","author":"Fonseca","year":"2014","journal-title":"J. Child Health Care"},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"673","DOI":"10.1111\/j.1365-2214.2009.00951.x","article-title":"Parents\u2019 reactions to the diagnosis of cerebral palsy: Associations between resolution, age and severity of disability","volume":"35","author":"Schuengel","year":"2009","journal-title":"Child Care Health Dev."},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"193","DOI":"10.1093\/fampra\/10.2.193","article-title":"Why do Mothers Consult when their Children Cough?","volume":"10","author":"Cornford","year":"1993","journal-title":"Fam. Pract."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"31","DOI":"10.1111\/j.1471-1842.2007.00736.x","article-title":"Qualitative analysis of parents\u2019 information needs and psychosocial experiences when supporting children with health care needs","volume":"25","author":"Jackson","year":"2008","journal-title":"Health Inf. Libr. J."},{"key":"ref_40","doi-asserted-by":"crossref","unstructured":"Marcus, E., Latos-Bielenska, A., Jamry-Dziurla, A., Bari\u0161i\u0107, I., Cavero-Carbonell, C., Hond, E.D., Garne, E., Genard, L., Santos, A.J., and Lutke, L. (2022). Information needs of parents of children with congenital anomalies across Europe: A EUROlinkCAT survey. BMC Pediatr., 22.","DOI":"10.1186\/s12887-022-03734-z"},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"1344","DOI":"10.1111\/j.1651-2227.2002.tb02832.x","article-title":"First information and support provided to parents of children with Down syndrome in Sweden: Clinical goals and parental experiences","volume":"91","author":"Hedov","year":"2002","journal-title":"Acta Paediatr."},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"165","DOI":"10.1111\/j.1365-2648.2004.03075.x","article-title":"Parents\u2019 experiences of having a child with cleft lip and palate","volume":"47","author":"Johansson","year":"2004","journal-title":"J. Adv. Nurs."},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"309","DOI":"10.1046\/j.1365-2214.2000.00149.x","article-title":"Coping when a child has a disability: Exploring the impact of parent-to-parent support","volume":"26","author":"Kerr","year":"2000","journal-title":"Child Care Health Dev."},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"225","DOI":"10.1002\/jcu.23330","article-title":"The use of cardiac ultrasound imaging in first-trimester prenatal diagnosis of congenital heart diseases","volume":"51","author":"Ximenes","year":"2022","journal-title":"J. Clin. Ultrasound"},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"333","DOI":"10.1007\/s00404-019-05422-3","article-title":"First trimester detection of fetal open spina bifida using BS\/BSOB ratio","volume":"301","author":"Sirico","year":"2020","journal-title":"Arch. Gynecol. Obstet."},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"992","DOI":"10.1177\/1460458215602939","article-title":"Health information needs, sources, and barriers of primary care patients to achieve patient-centered care: A literature review","volume":"22","author":"Clarke","year":"2016","journal-title":"Health Inform. J."},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"148","DOI":"10.1111\/j.1475-6773.2005.00455.x","article-title":"Parent-Identified Barriers to Pediatric Health Care: A Process-Oriented Model","volume":"41","author":"Sobo","year":"2006","journal-title":"Health Serv. Res."},{"key":"ref_48","doi-asserted-by":"crossref","first-page":"648","DOI":"10.1007\/s10995-018-2477-2","article-title":"Care Coordination: Empowering Families, a Promising Practice to Facilitate Medical Home Use Among Children and Youth with Special Health Care Needs","volume":"22","author":"Ufer","year":"2018","journal-title":"Matern. Child Health J."}],"container-title":["Children"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2227-9067\/10\/6\/1051\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T19:53:26Z","timestamp":1760126006000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2227-9067\/10\/6\/1051"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,6,12]]},"references-count":48,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2023,6]]}},"alternative-id":["children10061051"],"URL":"https:\/\/doi.org\/10.3390\/children10061051","relation":{},"ISSN":["2227-9067"],"issn-type":[{"value":"2227-9067","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,6,12]]}}}