{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T19:59:06Z","timestamp":1790366346537,"version":"4.1.0"},"reference-count":73,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T00:00:00Z","timestamp":1786406400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"},{"start":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T00:00:00Z","timestamp":1790294400000},"content-version":"vor","delay-in-days":45,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"}],"funder":[{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["GNT2015902"],"award-info":[{"award-number":["GNT2015902"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["GNT2015902"],"award-info":[{"award-number":["GNT2015902"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["GNT2015902"],"award-info":[{"award-number":["GNT2015902"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["GNT2015902"],"award-info":[{"award-number":["GNT2015902"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["GNT2015902"],"award-info":[{"award-number":["GNT2015902"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["GNT2015902"],"award-info":[{"award-number":["GNT2015902"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100020265","name":"Stan Perron Charitable Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100020265","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Health Serv Res"],"DOI":"10.1186\/s12913-026-15340-1","type":"journal-article","created":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T07:25:27Z","timestamp":1786433127000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Exploration of the relationships between health literacy and experience of care integration in parents of children with special healthcare needs: a cross-sectional study"],"prefix":"10.1186","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7033-5063","authenticated-orcid":false,"given":"Rachel","family":"Skoss","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Collins","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter","family":"Jacoby","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine","family":"Langdon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thom","family":"Nevill","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zhenmei","family":"Yeap","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Keeley","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jenny","family":"Downs","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,8,11]]},"reference":[{"issue":"8","key":"15340_CR1","doi-asserted-by":"publisher","first-page":"1489","DOI":"10.1016\/j.acap.2022.08.004","volume":"22","author":"JA Yu","year":"2022","unstructured":"Yu JA, Bayer ND, Beach SR, Kuo DZ, Houtrow AJ. A National Profile of Families and Caregivers of Children With Disabilities and\/or Medical Complexity. Acad Pediatr. 2022;22(8):1489\u201398.","journal-title":"Acad Pediatr"},{"issue":"1","key":"15340_CR2","doi-asserted-by":"publisher","first-page":"751","DOI":"10.1186\/s12913-018-3553-4","volume":"18","author":"C Breen","year":"2018","unstructured":"Breen C, Altman L, Ging J, Deverell M, Woolfenden S, Zurynski Y. Significant reductions in tertiary hospital encounters and less travel for families after implementation of Paediatric Care Coordination in Australia. BMC Health Serv Res. 2018;18(1):751.","journal-title":"BMC Health Serv Res"},{"issue":"1 Pt 1","key":"15340_CR3","doi-asserted-by":"publisher","first-page":"137","DOI":"10.1542\/peds.102.1.137","volume":"102","author":"M McPherson","year":"1998","unstructured":"McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, Perrin JM, Shonkoff JP, Strickland B. A new definition of children with special health care needs. Pediatrics. 1998;102(1 Pt 1):137\u201340.","journal-title":"Pediatrics"},{"issue":"12","key":"15340_CR4","doi-asserted-by":"publisher","first-page":"e329","DOI":"10.1038\/tp.2013.108","volume":"3","author":"AP Mullin","year":"2013","unstructured":"Mullin AP, Gokhale A, Moreno-De-Luca A, Sanyal S, Waddington JL, Faundez V. Neurodevelopmental disorders: mechanisms and boundary definitions from genomes, interactomes and proteomes. Transl Psychiatry. 2013;3(12):e329.","journal-title":"Transl Psychiatry"},{"key":"15340_CR5","doi-asserted-by":"publisher","unstructured":"Bell MF, Bayliss DM, Glauert R, Harrison A, Ohan JL. Chronic illness and developmental vulnerability at school entry. Pediatrics. 2016;137(5):2015-2475 https:\/\/doi.org\/10.1542\/peds.2015-2475.","DOI":"10.1542\/peds.2015-2475"},{"issue":"3","key":"15340_CR6","doi-asserted-by":"publisher","first-page":"529","DOI":"10.1542\/peds.2010-0910","volume":"127","author":"E Cohen","year":"2011","unstructured":"Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD, Srivastava R. Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives. Pediatrics. 2011;127(3):529\u201338.","journal-title":"Pediatrics"},{"issue":"4","key":"15340_CR7","doi-asserted-by":"publisher","first-page":"1517","DOI":"10.1007\/s00431-023-04851-2","volume":"182","author":"L Cassidy","year":"2023","unstructured":"Cassidy L, Quirke MB, Alexander D, Greene J, Hill K, Connolly M, Brenner M. Integrated care for children living with complex care needs: an evolutionary concept analysis. Eur J Pediatr. 2023;182(4):1517\u201332.","journal-title":"Eur J Pediatr"},{"issue":"11","key":"15340_CR8","doi-asserted-by":"publisher","first-page":"832","DOI":"10.1016\/S2352-4642(18)30270-0","volume":"2","author":"M Brenner","year":"2018","unstructured":"Brenner M, O\u2019Shea MP, McHugh R, Clancy A, Larkin P, Luzi D, Pecoraro F, Olaso EM, Lignou S, Alma M, et al. Principles for provision of integrated complex care for children across the acute-community interface in Europe. Lancet Child Adolesc Health. 2018;2(11):832\u20138.","journal-title":"Lancet Child Adolesc Health"},{"key":"15340_CR9","doi-asserted-by":"publisher","first-page":"100275","DOI":"10.1016\/j.ijnsa.2024.100275","volume":"8","author":"R Sheehan","year":"2025","unstructured":"Sheehan R, Ryder M, Brenner M. Quality care for children and young people with complex and integrated care needs: A discussion on nursing-sensitive indicators. Int J Nurs Stud Adv. 2025;8:100275.","journal-title":"Int J Nurs Stud Adv"},{"issue":"8","key":"15340_CR10","doi-asserted-by":"publisher","first-page":"2388","DOI":"10.1007\/s10826-014-0041-2","volume":"24","author":"M Rivard","year":"2015","unstructured":"Rivard M, L\u00e9pine A, Mercier C, Morin M. Quality Determinants of Services for Parents of Young Children with Autism Spectrum Disorders. J Child Fam stud. 2015;24(8):2388\u201397.","journal-title":"J Child Fam stud"},{"key":"15340_CR11","doi-asserted-by":"crossref","unstructured":"Nevill TB, Keeley M, Yeap J, Lindly Z, Schippers OJ, Collins A, Langdon R, Mills K, Abbott J, Downs A, Skoss J. R.: Healthcare Savvi: exploring health literacy and parent\u2019s experiences in supporting the health of children with intellectual disability. 2025.","DOI":"10.2139\/ssrn.5244074"},{"issue":"1","key":"15340_CR12","doi-asserted-by":"publisher","first-page":"112","DOI":"10.1177\/1077558710371485","volume":"68","author":"SJ Singer","year":"2011","unstructured":"Singer SJ, Burgers J, Friedberg M, Rosenthal MB, Leape L, Schneider E. Defining and measuring integrated patient care: promoting the next frontier in health care delivery. Med Care Res Rev. 2011;68(1):112\u201327.","journal-title":"Med Care Res Rev"},{"issue":"12","key":"15340_CR13","doi-asserted-by":"publisher","first-page":"e41944","DOI":"10.1097\/MD.0000000000041944","volume":"104","author":"T Nonoyama","year":"2025","unstructured":"Nonoyama T, Kadoma A, Kaneko T, Niinomi K, Ozaki I, Asano M. Psychosocial support and care for children with special healthcare needs and their families: A scoping review for enhancing the care system. Med (Baltim). 2025;104(12):e41944.","journal-title":"Med (Baltim)"},{"issue":"7","key":"15340_CR14","doi-asserted-by":"publisher","first-page":"1110","DOI":"10.1007\/s10995-010-0658-8","volume":"15","author":"JE Farmer","year":"2011","unstructured":"Farmer JE, Clark MJ, Drewel EH, Swenson TM, Ge B. Consultative care coordination through the medical home for CSHCN: a randomized controlled trial. Matern Child Health J. 2011;15(7):1110\u20138.","journal-title":"Matern Child Health J"},{"issue":"4","key":"15340_CR15","doi-asserted-by":"publisher","first-page":"e004606","DOI":"10.1136\/bmjopen-2013-004606","volume":"4","author":"I Tuffrey-Wijne","year":"2014","unstructured":"Tuffrey-Wijne I, Goulding L, Giatras N, Abraham E, Gillard S, White S, Edwards C, Hollins S. The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study. BMJ Open. 2014;4(4):e004606.","journal-title":"BMJ Open"},{"key":"15340_CR16","doi-asserted-by":"publisher","unstructured":"Altman L, Breen C, Ging J, Burrett S, Hoffmann T, Dickins E, Brown K, Zurynski Y, Woolfenden S. Dealing with the Hospital has Become too Difficult for Us to Do Alone \u2013 Developing an Integrated Care Program for Children with Medical Complexity (CMC). Int J Integr Care. 2018;18(3):14. https:\/\/doi.org\/10.5334\/ijic.3953.","DOI":"10.5334\/ijic.3953"},{"issue":"6","key":"15340_CR17","doi-asserted-by":"publisher","first-page":"666","DOI":"10.1111\/jpc.14266","volume":"55","author":"J Son","year":"2019","unstructured":"Son J, Debono D, Leitner R, Lenroot R, Johnson J. Pass the parcel: Service provider views on bridging gaps for youth with dual diagnosis of intellectual disability and mental health disorders in regional areas. J Paediatr Child Health. 2019;55(6):666\u201372.","journal-title":"J Paediatr Child Health"},{"issue":"1","key":"15340_CR18","doi-asserted-by":"publisher","first-page":"e13925","DOI":"10.1111\/hex.13925","volume":"27","author":"N Ong","year":"2024","unstructured":"Ong N, Lucien A, Long J, Weise J, Burgess A, Walton M. What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis. Health Expect. 2024;27(1):e13925.","journal-title":"Health Expect"},{"key":"15340_CR19","volume-title":"Australian models of healthcare for people with intellectual disability: a scoping review","author":"J Downs","year":"2025","unstructured":"Downs J, Prodanovic D, Leong R, Brooker K, Leonard H, Eagleson C, Fochesato B, Giesberts A, Trollor JN, Foley K-R. Australian models of healthcare for people with intellectual disability: a scoping review. In. Sydney, Australia: National Centre of Excellence in Intellectual Disability Health; 2025."},{"issue":"6","key":"15340_CR20","doi-asserted-by":"publisher","first-page":"e186","DOI":"10.1192\/bjo.2024.749","volume":"10","author":"T Shillito","year":"2024","unstructured":"Shillito T, Watkins L, Ali H, Page G, Pullen A, Mitchell S, Roy A, Sen A, Kinney M, Thomas R, et al. Evidencing the challenges of care delivery for people with intellectual disability and epilepsy in England by using the Step Together toolkit. BJPsych Open. 2024;10(6):e186.","journal-title":"BJPsych Open"},{"issue":"1","key":"15340_CR21","doi-asserted-by":"publisher","first-page":"130","DOI":"10.1186\/1471-2458-12-130","volume":"12","author":"M Edwards","year":"2012","unstructured":"Edwards M, Wood F, Davies M, Edwards A. The development of health literacy in patients with a long-term health condition: the health literacy pathway model. BMC Public Health. 2012;12(1):130.","journal-title":"BMC Public Health"},{"key":"15340_CR22","doi-asserted-by":"publisher","first-page":"65","DOI":"10.1016\/j.pedn.2021.02.014","volume":"60","author":"PR Lawrence","year":"2021","unstructured":"Lawrence PR, Feinberg I, Spratling R. The Relationship of Parental Health Literacy to Health Outcomes of Children with Medical Complexity. J Pediatr Nurs. 2021;60:65\u201370.","journal-title":"J Pediatr Nurs"},{"issue":"1","key":"15340_CR23","doi-asserted-by":"publisher","first-page":"e70138","DOI":"10.1111\/hex.70138","volume":"28","author":"T Nevill","year":"2025","unstructured":"Nevill T, Keely J, Skoss R, Collins R, Langdon K, Mills J, Downs J. What I Wish I Had Known: Examining Parent Accounts of Managing the Health of Their Child With Intellectual Disability. Health Expect. 2025;28(1):e70138.","journal-title":"Health Expect"},{"issue":"4","key":"15340_CR24","doi-asserted-by":"publisher","first-page":"634","DOI":"10.1093\/heapro\/dat013","volume":"29","author":"K S\u00f8rensen","year":"2014","unstructured":"S\u00f8rensen K, Brand H. Health literacy lost in translations? Introducing the European Health Literacy Glossary. Health Promot Int. 2014;29(4):634\u201344.","journal-title":"Health Promot Int"},{"issue":"Suppl 3","key":"15340_CR25","doi-asserted-by":"publisher","first-page":"S265","DOI":"10.1542\/peds.2009-1162B","volume":"124","author":"DA DeWalt","year":"2009","unstructured":"DeWalt DA, Hink A. Health literacy and child health outcomes: a systematic review of the literature. Pediatrics. 2009;124(Suppl 3):S265\u2013274.","journal-title":"Pediatrics"},{"issue":"2","key":"15340_CR26","doi-asserted-by":"publisher","first-page":"69","DOI":"10.1089\/ped.2013.0237","volume":"26","author":"KF Harrington","year":"2013","unstructured":"Harrington KF, Haven KM, Bailey WC, Gerald LB. Provider Perceptions of Parent Health Literacy and Effect on Asthma Treatment Recommendations and Instructions. Pediatr Allergy Immunol Pulmonol. 2013;26(2):69\u201375.","journal-title":"Pediatr Allergy Immunol Pulmonol"},{"key":"15340_CR27","doi-asserted-by":"publisher","unstructured":"\u0160ulinskait\u0117 K, Zagurskien\u0117 D, Bla\u017eevi\u010dien\u0117 A. Patients' health literacy and health behaviour assessment in primary health care: evidence from a cross-sectional survey. BMC Prim Care. 2022;23(1):223. https:\/\/doi.org\/10.1186\/s12875-022-01809-5.","DOI":"10.1186\/s12875-022-01809-5"},{"key":"15340_CR28","unstructured":"Supplementary module. High intensity daily personal activities [https:\/\/www.ndiscommission.gov.au\/rules-and-standards\/ndis-practice-standards\/supplementary-module-high-intensity-daily-personal#paragraph-id-8163]"},{"issue":"1","key":"15340_CR29","doi-asserted-by":"publisher","first-page":"92","DOI":"10.1186\/s12887-015-0412-x","volume":"15","author":"J Keim-Malpass","year":"2015","unstructured":"Keim-Malpass J, Letzkus LC, Kennedy C. Parent\/caregiver health literacy among children with special health care needs: a systematic review of the literature. BMC Pediatr. 2015;15(1):92.","journal-title":"BMC Pediatr"},{"key":"15340_CR30","doi-asserted-by":"publisher","first-page":"101532","DOI":"10.1016\/j.ienj.2024.101532","volume":"77","author":"D Lysak","year":"2024","unstructured":"Lysak D, Ali S, Neufeld S, Scott SD. Children with medical complexity in the emergency department: Parent experiences and information needs. Int Emerg Nurs. 2024;77:101532.","journal-title":"Int Emerg Nurs"},{"key":"15340_CR31","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1016\/j.puhe.2016.01.001","volume":"132","author":"RW Batterham","year":"2016","unstructured":"Batterham RW, Hawkins M, Collins PA, Buchbinder R, Osborne RH. Health literacy: applying current concepts to improve health services and reduce health inequalities. Public Health. 2016;132:3\u201312.","journal-title":"Public Health"},{"issue":"5","key":"15340_CR32","doi-asserted-by":"publisher","first-page":"772","DOI":"10.1111\/cch.12986","volume":"48","author":"RL Dodds","year":"2022","unstructured":"Dodds RL, Walch TJ. The glue that keeps everybody together: Peer support in mothers of young children with special health care needs. Child Care Health Dev. 2022;48(5):772\u201380.","journal-title":"Child Care Health Dev"},{"key":"15340_CR33","doi-asserted-by":"publisher","first-page":"6","DOI":"10.1016\/j.pedn.2022.05.008","volume":"66","author":"MD Pollock","year":"2022","unstructured":"Pollock MD, Ming D, Chung RJ, Maslow G. Parent-to-parent peer support for children and youth with special health care needs: Preliminary evaluation of a family partner program in a healthcare system. J Pediatr Nurs. 2022;66:6\u201314.","journal-title":"J Pediatr Nurs"},{"issue":"1","key":"15340_CR34","doi-asserted-by":"publisher","first-page":"68","DOI":"10.1027\/1016-9040\/a000350","volume":"24","author":"E Neter","year":"2019","unstructured":"Neter E, Brainin E. Association Between Health Literacy, eHealth Literacy, and Health Outcomes Among Patients With Long-Term Conditions. Eur Psychol. 2019;24(1):68\u201381.","journal-title":"Eur Psychol"},{"issue":"1","key":"15340_CR35","doi-asserted-by":"publisher","first-page":"1148","DOI":"10.1186\/s12913-022-08527-9","volume":"22","author":"R Shahid","year":"2022","unstructured":"Shahid R, Shoker M, Chu LM, Frehlick R, Ward H, Pahwa P. Impact of low health literacy on patients\u2019 health outcomes: a multicenter cohort study. BMC Health Serv Res. 2022;22(1):1148.","journal-title":"BMC Health Serv Res"},{"issue":"Suppl 1","key":"15340_CR36","doi-asserted-by":"publisher","first-page":"S31","DOI":"10.4103\/sja.SJA_543_18","volume":"13","author":"S Cuschieri","year":"2019","unstructured":"Cuschieri S. The STROBE guidelines. Saudi J Anaesth. 2019;13(Suppl 1):S31\u20134.","journal-title":"Saudi J Anaesth"},{"issue":"2","key":"15340_CR37","doi-asserted-by":"publisher","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","volume":"42","author":"PA Harris","year":"2009","unstructured":"Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inf. 2009;42(2):377\u201381.","journal-title":"J Biomed Inf"},{"issue":"1","key":"15340_CR38","doi-asserted-by":"publisher","first-page":"658","DOI":"10.1186\/1471-2458-13-658","volume":"13","author":"RH Osborne","year":"2013","unstructured":"Osborne RH, Batterham RW, Elsworth GR, Hawkins M, Buchbinder R. The grounded psychometric development and initial validation of the Health Literacy Questionnaire (HLQ). BMC Public Health. 2013;13(1):658.","journal-title":"BMC Public Health"},{"key":"15340_CR39","doi-asserted-by":"publisher","unstructured":"Ziniel SI, Rosenberg HN, Bach AM, Singer SJ, Antonelli RC. Validation of a parent-reported experience measure of integrated care. Pediatrics. 2016;138(6):e20160676. https:\/\/doi.org\/10.1542\/peds.2016-0676.","DOI":"10.1542\/peds.2016-0676"},{"issue":"6","key":"15340_CR40","doi-asserted-by":"publisher","first-page":"875","DOI":"10.1007\/s11136-010-9648-y","volume":"19","author":"N Wille","year":"2010","unstructured":"Wille N, Badia X, Bonsel G, Burstr\u00f6m K, Cavrini G, Devlin N, Egmar AC, Greiner W, Gusi N, Herdman M, et al. Development of the EQ-5D-Y: a child-friendly version of the EQ-5D. Qual Life Res. 2010;19(6):875\u201386.","journal-title":"Qual Life Res"},{"issue":"6","key":"15340_CR41","doi-asserted-by":"publisher","first-page":"887","DOI":"10.1007\/s11136-010-9649-x","volume":"19","author":"U Ravens-Sieberer","year":"2010","unstructured":"Ravens-Sieberer U, Wille N, Badia X, Bonsel G, Burstr\u00f6m K, Cavrini G, Devlin N, Egmar AC, Gusi N, Herdman M, et al. Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Qual Life Res. 2010;19(6):887\u201397.","journal-title":"Qual Life Res"},{"issue":"6","key":"15340_CR42","doi-asserted-by":"publisher","first-page":"776","DOI":"10.1016\/j.jval.2024.02.016","volume":"27","author":"J Downs","year":"2024","unstructured":"Downs J, Norman R, Mulhern B, Jacoby P, Reddihough D, Choong CS, Finlay-Jones A, Blackmore AM. Psychometric Properties of the EQ-5D-Y-5L for Children With Intellectual Disability. Value Health. 2024;27(6):776\u201383.","journal-title":"Value Health"},{"issue":"4","key":"15340_CR43","doi-asserted-by":"publisher","first-page":"385","DOI":"10.2307\/2136404","volume":"24","author":"S Cohen","year":"1983","unstructured":"Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav. 1983;24(4):385\u201396.","journal-title":"J Health Soc Behav"},{"key":"15340_CR44","doi-asserted-by":"publisher","unstructured":"Vallejo MA, Vallejo-Slocker L, Fern\u00e1ndez-Abascal EG, Ma\u00f1anes G. Determining factors for stress perception assessed with the Perceived Stress Scale (PSS-4) in Spanish and other European samples. Front Psychol. 2018;9:37. https:\/\/doi.org\/10.3389\/fpsyg.2018.00037.","DOI":"10.3389\/fpsyg.2018.00037"},{"key":"15340_CR45","volume-title":"Stata Statistical Software. In., Release 18 edn","author":"LLC S","year":"2023","unstructured":"LLC S. Stata Statistical Software. In., Release 18 edn. College Station, TX: StataCorp LLC; 2023."},{"issue":"1","key":"15340_CR46","doi-asserted-by":"publisher","first-page":"694","DOI":"10.1186\/1471-2458-14-694","volume":"14","author":"RW Batterham","year":"2014","unstructured":"Batterham RW, Buchbinder R, Beauchamp A, Dodson S, Elsworth GR, Osborne RH. The OPtimising HEalth LIterAcy (Ophelia) process: study protocol for using health literacy profiling and community engagement to create and implement health reform. BMC Public Health. 2014;14(1):694.","journal-title":"BMC Public Health"},{"issue":"4","key":"15340_CR47","doi-asserted-by":"publisher","first-page":"e663","DOI":"10.1093\/pubmed\/fdae165","volume":"46","author":"C Cheng","year":"2024","unstructured":"Cheng C, Elmer S, Batterham R, Hawkins M, Osborne RH. Measuring health literacy to inform actions to address health inequities: a cluster analysis approach based on the Australian national health literacy survey. J Public Health. 2024;46(4):e663\u201374.","journal-title":"J Public Health"},{"key":"15340_CR48","volume-title":"Multivariate Data Analysis","author":"JFJB Hair","year":"2019","unstructured":"Hair JFJB, Babin WC, Anderson BJ. R.E.: Multivariate Data Analysis. 8 ed. United Kingdom: Cengage Learning, EMEA; 2019.","edition":"8"},{"issue":"5","key":"15340_CR49","doi-asserted-by":"publisher","first-page":"e940","DOI":"10.1542\/peds.2008-2921","volume":"123","author":"PW Newacheck","year":"2009","unstructured":"Newacheck PW, Houtrow AJ, Romm DL, Kuhlthau KA, Bloom SR, Van Cleave JM, Perrin JM. The Future of Health Insurance for Children With Special Health Care Needs. Pediatrics. 2009;123(5):e940\u20137.","journal-title":"Pediatrics"},{"key":"15340_CR50","unstructured":"Downs J, Prodanovic D, Leong R, Brooker K, Leonard H, Eagleson C, Fochesato B, Giesberts A, Trollor J, Foley K-R. Australian models of healthcare for people with intellectual disability: a scoping review. In.: National Centre of Excellence in Intellectual Disability Health; 2025."},{"key":"15340_CR51","doi-asserted-by":"crossref","unstructured":"Parry YK, Ahad MA, Willis E, Ankers M. Australian caregivers' experiences of paediatric wait times for primary and allied healthcare appointments: a scoping review. Health Soc Care Community. 2024;2024:4277668","DOI":"10.1155\/2024\/4277668"},{"issue":"4","key":"15340_CR52","doi-asserted-by":"publisher","first-page":"504","DOI":"10.1016\/j.healthpol.2021.01.003","volume":"125","author":"A Pak","year":"2021","unstructured":"Pak A, Gannon B. Do access, quality and cost of general practice affect emergency department use? Health Policy. 2021;125(4):504\u201311.","journal-title":"Health Policy"},{"issue":"5","key":"15340_CR53","doi-asserted-by":"publisher","first-page":"421","DOI":"10.1016\/j.acap.2013.03.001","volume":"13","author":"AK Morrison","year":"2013","unstructured":"Morrison AK, Myrvik MP, Brousseau DC, Hoffmann RG, Stanley RM. The relationship between parent health literacy and pediatric emergency department utilization: a systematic review. Acad Pediatr. 2013;13(5):421\u20139.","journal-title":"Acad Pediatr"},{"key":"15340_CR54","unstructured":"Welfare, AIoHa. Use of emergency departments for lower urgency care 2017-18 to 2022-23. In. Edited by Welfare AIoHa; 2025."},{"key":"15340_CR55","doi-asserted-by":"crossref","unstructured":"Marbella J, Terry D, Peck B. Parental decision-making for non-urgent emergency department presentations in Victoria, Australia. J Child Health Care. 2026;30(2):13674935251347759.","DOI":"10.1177\/13674935251347759"},{"issue":"1","key":"15340_CR56","doi-asserted-by":"publisher","first-page":"942","DOI":"10.1186\/s12913-025-12998-x","volume":"25","author":"A Douglas","year":"2025","unstructured":"Douglas A, McPhee M, Fisher F, Cheng C, Henders A, Ziser L, Stout JC, Kiernan MC, Osborne R, Mathers S. Using cluster analysis to identify the health literacy strengths and challenges of people living with motor neurone disease in Australia. BMC Health Serv Res. 2025;25(1):942.","journal-title":"BMC Health Serv Res"},{"key":"15340_CR57","doi-asserted-by":"publisher","first-page":"108658","DOI":"10.1016\/j.yebeh.2022.108658","volume":"130","author":"MK Tschamper","year":"2022","unstructured":"Tschamper MK, Wahl AK, Hermansen \u00c5, Jakobsen R, Larsen MH. Parents of children with epilepsy: Characteristics associated with high and low levels of health literacy. Epilepsy Behav. 2022;130:108658.","journal-title":"Epilepsy Behav"},{"issue":"1","key":"15340_CR58","doi-asserted-by":"publisher","first-page":"513","DOI":"10.1186\/s12913-017-2465-z","volume":"17","author":"A Trezona","year":"2017","unstructured":"Trezona A, Dodson S, Osborne RH. Development of the organisational health literacy responsiveness (Org-HLR) framework in collaboration with health and social services professionals. BMC Health Serv Res. 2017;17(1):513.","journal-title":"BMC Health Serv Res"},{"issue":"1","key":"15340_CR59","doi-asserted-by":"publisher","first-page":"63","DOI":"10.1186\/s12913-022-08872-9","volume":"23","author":"L Millar","year":"2023","unstructured":"Millar L, Bhoyroo R, Molina YP, Watts J, Geagea A, Murphy J, Pollard CM. Intersection between health, health literacy and local government: a mixed methods approach to identifying ways to better connect people to place-based primary health care in Western Australia. BMC Health Serv Res. 2023;23(1):63.","journal-title":"BMC Health Serv Res"},{"issue":"4","key":"15340_CR60","doi-asserted-by":"publisher","first-page":"528","DOI":"10.1007\/s10995-020-03057-4","volume":"25","author":"RM Taylor","year":"2021","unstructured":"Taylor RM, Minkovitz CS. Warm Handoffs for Improving Client Receipt of Services: A Systematic Review. Matern Child Health J. 2021;25(4):528\u201341.","journal-title":"Matern Child Health J"},{"issue":"1","key":"15340_CR61","doi-asserted-by":"publisher","first-page":"233","DOI":"10.1186\/s13023-022-02358-x","volume":"17","author":"A Bauskis","year":"2022","unstructured":"Bauskis A, Strange C, Molster C, Fisher C. The diagnostic odyssey: insights from parents of children living with an undiagnosed condition. Orphanet J Rare Dis. 2022;17(1):233.","journal-title":"Orphanet J Rare Dis"},{"issue":"Suppl 3","key":"15340_CR62","doi-asserted-by":"publisher","first-page":"S195","DOI":"10.1542\/peds.2017-1284D","volume":"141","author":"C Allshouse","year":"2018","unstructured":"Allshouse C, Comeau M, Rodgers R, Wells N. Families of Children With Medical Complexity: A View From the Front Lines. Pediatrics. 2018;141(Suppl 3):S195\u2013201.","journal-title":"Pediatrics"},{"issue":"5","key":"15340_CR63","first-page":"171","volume":"65","author":"ARGEWV Miller","year":"2023","unstructured":"Miller ARGEWV. Navigational support for families with children who have special developmental needs. BC Med J. 2023;65(5):171\u20137.","journal-title":"BC Med J"},{"issue":"1","key":"15340_CR64","doi-asserted-by":"publisher","first-page":"9","DOI":"10.3390\/children12010009","volume":"12","author":"T Nevill","year":"2025","unstructured":"Nevill T, Keeley J, Hunt S, Skoss R, Lindly O, Downs J, Blackmore AM. Efficacy of Health Literacy Interventions for Caregivers of Individuals with Neurodevelopmental and Chronic Conditions. Rapid Rev Child. 2025;12(1):9.","journal-title":"Rapid Rev Child"},{"issue":"1","key":"15340_CR65","doi-asserted-by":"publisher","first-page":"786","DOI":"10.1186\/s12912-024-02447-1","volume":"23","author":"A McCaskill","year":"2024","unstructured":"McCaskill A, Gasch-Gallen A, Montero-Marco J. The effect of nurse health literacy interventions on patient health literacy scores in specialty consultations: a quasi-experimental study. BMC Nurs. 2024;23(1):786.","journal-title":"BMC Nurs"},{"issue":"1","key":"15340_CR66","first-page":"e000072","volume":"4","author":"N Thevathasan","year":"2022","unstructured":"Thevathasan N, Luck KE, Luke A, Doucet S. Perceptions and experiences of care providers as clients of NaviCare\/SoinsNavi: a patient navigation centre for children and youth with complex care needs. Integr Healthc J. 2022;4(1):e000072.","journal-title":"Integr Healthc J"},{"key":"15340_CR67","doi-asserted-by":"publisher","first-page":"114755","DOI":"10.1016\/j.jpeds.2025.114755","volume":"287","author":"RM Marpole","year":"2025","unstructured":"Marpole RM, Blackmore AM, Wilson AC, Cooper MS, Depiazzi J, Langdon K, Moshovis L, Bowen AC, Gibson N. Can Respiratory Hospital Admissions in Children with Cerebral Palsy Be Reduced? A Feasibility Randomized Controlled Trial (RESP-ACT). J Pediatr. 2025;287:114755.","journal-title":"J Pediatr"},{"key":"15340_CR68","doi-asserted-by":"publisher","unstructured":"Brenner M, Doyle A, Begley T, Doyle C, Hill K, Murphy M. Enhancing care of children with complex healthcare needs: an improvement project in a community health organisation in Ireland. BMJ Open Qual. 2021;10(1):e001025. https:\/\/doi.org\/10.1136\/bmjoq-2020-001025.","DOI":"10.1136\/bmjoq-2020-001025"},{"issue":"3","key":"15340_CR69","doi-asserted-by":"publisher","first-page":"195","DOI":"10.21101\/cejph.a6692","volume":"29","author":"M Michou","year":"2021","unstructured":"Michou M, Panagiotakos DB, Lionis C, Costarelli V. Low health literacy and perceived stress in adults: is there a link? Cent Eur J Public Health. 2021;29(3):195\u2013200.","journal-title":"Cent Eur J Public Health"},{"issue":"2","key":"15340_CR70","doi-asserted-by":"publisher","first-page":"192","DOI":"10.1017\/ipm.2020.4","volume":"40","author":"E Staunton","year":"2023","unstructured":"Staunton E, Kehoe C, Sharkey L. Families under pressure: stress and quality of life in parents of children with an intellectual disability. Ir J Psychol Med. 2023;40(2):192\u20139.","journal-title":"Ir J Psychol Med"},{"issue":"3","key":"15340_CR71","first-page":"473","volume":"16","author":"N Lohiya","year":"2023","unstructured":"Lohiya N, Srivastava L, Lohiya N, Kalrao V. Stress among mothers of children with Autism Spectrum Disorder in comparison to children with & without special health care needs. J Pediatr Rehabil Med. 2023;16(3):473\u201381.","journal-title":"J Pediatr Rehabil Med"},{"issue":"19\u201320","key":"15340_CR72","doi-asserted-by":"publisher","first-page":"7101","DOI":"10.1111\/jocn.16806","volume":"32","author":"S Thomas","year":"2023","unstructured":"Thomas S, Ryan NP, Byrne LK, Hendrieckx C, White V. Unmet supportive care needs of families of children with chronic illness: A systematic review. J Clin Nurs. 2023;32(19\u201320):7101\u201324.","journal-title":"J Clin Nurs"},{"key":"15340_CR73","doi-asserted-by":"publisher","unstructured":"O\u2019Flaherty M, Hill J, Smith-Merry J. Understanding inequality within a personalised system of disability support: Australian children with disabilities\u2019 unmet support needs. Aust J Soc Issues. 61(2):318-330. https:\/\/doi.org\/10.1002\/ajs4.70062.","DOI":"10.1002\/ajs4.70062"}],"container-title":["BMC Health Services Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12913-026-15340-1","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12913-026-15340-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12913-026-15340-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T19:02:44Z","timestamp":1790362964000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1186\/s12913-026-15340-1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,8,11]]},"references-count":73,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["15340"],"URL":"https:\/\/doi.org\/10.1186\/s12913-026-15340-1","relation":{},"ISSN":["1472-6963"],"issn-type":[{"value":"1472-6963","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,8,11]]},"assertion":[{"value":"11 September 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"5 August 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"11 August 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Ethics approval for this study (2021\/ET000902) was provided by the University of Western Australia Human Research Ethics Committee in accordance to the Australian National Statement on Ethical Conduct in Human Research. This study adhered to the Declaration of Helsinki. Informed consent to participate was obtained from all participants.","order":1,"name":"Ethics","label":"Ethics approval and consent to participate","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":2,"name":"Ethics","label":"Consent for publication","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors declare no competing interests.","order":3,"name":"Ethics","label":"Competing interests","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"1316"}}