{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T23:25:20Z","timestamp":1787095520328,"version":"build-2736575974"},"reference-count":50,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,6,11]],"date-time":"2026-06-11T00:00:00Z","timestamp":1781136000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,8,19]],"date-time":"2026-08-19T00:00:00Z","timestamp":1787097600000},"content-version":"vor","delay-in-days":69,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"University of Illinois Chicago Interagency Agreement with the Illinois Department of Public Health Title V"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Health Serv Res"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Caregivers of children and youth with special health care needs (CYSHCN), including those with disabilities, have numerous roles managing care for their children. While caregiver burden is well documented, less is known about how barriers within the healthcare delivery system contribute to this burden and how systems can be redesigned to better support families. This study explored Illinois caregivers\u2019 experiences navigating the healthcare delivery system for CYSHCN and sought their perspectives on resources needed to reduce caregiver burden.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>We conducted a qualitative study as part of a statewide needs assessment in Illinois. Three focus group discussions were conducted with caregivers of CYSHCN recruited through partner organizations. Discussions included participatory activities to elicit priority health needs and concerns for families of CYSHCN in Illinois. Audio recordings were transcribed verbatim, coded, and analyzed by the research team using content analysis to identify themes related to systems-level drivers of caregiver burden and potential solutions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Caregivers (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200922) described substantial emotional, logistical, and financial burden arising from fragmented healthcare delivery and insurance systems. Key challenges included poor communication and coordination across providers and health systems, inconsistent electronic health record integration, limited access to pediatric specialists, and inadequate availability and reliability of in-home nursing care. Insurance-related barriers, including instability in coverage, prior authorization requirements, and gaps in coverage for needed supplies, further exacerbated caregivers\u2019 strain. Despite these challenges, participants also identified approaches, resources, and supports they have utilized that mitigate caregiver burden, such as multidisciplinary care models, family-centered providers, and support networks. Caregivers emphasized the need for expanded care coordination and navigation, increased mental health supports for families, more flexible insurance and reimbursement policies, and greater investments in home-based care.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>The findings from this study underscore the need for improvements to the healthcare delivery system through coordinated efforts. Health systems and payers should prioritize the expansion of family-centered care coordination, strengthen communication across providers, and invest in a more stable home healthcare workforce. Advancing disability-inclusive, family centered systems through these strategies is essential to fostering better outcomes for both caregivers and CYSHCN.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s12913-026-14931-2","type":"journal-article","created":{"date-parts":[[2026,6,11]],"date-time":"2026-06-11T08:35:08Z","timestamp":1781166908000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Issues navigating the healthcare delivery system among caregivers of children and youth with special healthcare needs: a qualitative study"],"prefix":"10.1186","volume":"26","author":[{"given":"Caitlin M.","family":"Meyer","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca K.","family":"Campbell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maura R.","family":"Kelleher","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ebonie","family":"Zielinski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Molly","family":"Hofmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica D.","family":"Rothstein","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,6,11]]},"reference":[{"key":"14931_CR1","unstructured":"Maternal and Child Health Bureau. Children and youth with special health care needs [NCHS Data Brief] [Internet]. Rockville, MD: U.S. Department of Health and Human Services, Health Resources and Services Administration. 2022 Jun. Available from: https:\/\/mchb.hrsa.gov\/sites\/default\/files\/mchb\/programs-impact\/nsch-data-brief-children-youth-special-health-care-needs.pdf"},{"issue":"s7","key":"14931_CR2","doi-asserted-by":"publisher","first-page":"e2021056150D","DOI":"10.1542\/peds.2021-056150D","volume":"149","author":"RM Ghandour","year":"2022","unstructured":"Ghandour RM, Hirai AH, Kenney MK. Children and youth with special health care needs: A profile. Pediatrics. 2022;149(s7):e2021056150D. https:\/\/doi.org\/10.1542\/peds.2021-056150D.","journal-title":"Pediatrics"},{"issue":"3","key":"14931_CR3","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, et al. Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics. 2011;127(3):529\u201338. https:\/\/doi.org\/10.1542\/peds.2010-0910.","journal-title":"Pediatrics"},{"issue":"34","key":"14931_CR4","doi-asserted-by":"publisher","first-page":"740","DOI":"10.15585\/mmwr.mm7334a2","volume":"73","author":"G Kilmer","year":"2024","unstructured":"Kilmer G, Omura JD, Bouldin ED, Walker J, Spears K, Gore J, et al. Changes in health indicators among caregivers \u2014 United States, 2015\u20132016 to 2021\u20132022. MMWR Morb Mortal Wkly Rep. 2024;73(34):740\u20136. https:\/\/doi.org\/10.15585\/mmwr.mm7334a2. PubMed PMID: 39207933.","journal-title":"MMWR Morb Mortal Wkly Rep"},{"issue":"6","key":"14931_CR5","doi-asserted-by":"publisher","first-page":"e2022060198","DOI":"10.1542\/peds.2022-060198","volume":"151","author":"MS Brittan","year":"2023","unstructured":"Brittan MS, Chavez C, Blakely C, Holliman BD, Zuk J. Paid family caregiving for children with medical complexity. Pediatrics. 2023;151(6):e2022060198. https:\/\/doi.org\/10.1542\/peds.2022-060198.","journal-title":"Pediatrics"},{"issue":"3","key":"14931_CR6","doi-asserted-by":"publisher","first-page":"358","DOI":"10.1016\/j.jagp.2017.06.023","volume":"26","author":"R Schulz","year":"2018","unstructured":"Schulz R, Czaja SJ. Family caregiving: A vision for the future. Am J Geriatr Psychiatry. 2018;26(3):358\u201363. https:\/\/doi.org\/10.1016\/j.jagp.2017.06.023.","journal-title":"Am J Geriatr Psychiatry"},{"key":"14931_CR7","doi-asserted-by":"publisher","first-page":"1992","DOI":"10.1007\/s10995-021-03248-7","volume":"25","author":"A Lynch","year":"2021","unstructured":"Lynch A, Raziano V, Feehan K, Thompson E, Massey P, Turchi R. Unmet needs of male caregivers of children and youth with special health care needs. Matern Child Health J. 2021;25:1992\u20132001. https:\/\/doi.org\/10.1007\/s10995-021-03248-7.","journal-title":"Matern Child Health J"},{"issue":"6","key":"14931_CR8","doi-asserted-by":"publisher","first-page":"398","DOI":"10.1177\/1078390314561326","volume":"20","author":"C Caicedo","year":"2014","unstructured":"Caicedo C. Families With special needs children: Family health, functioning, and care burden. J Am Psychiatr Nurses Assoc. 2014;20(6):398\u2013407. https:\/\/doi.org\/10.1177\/1078390314561326.","journal-title":"J Am Psychiatr Nurses Assoc"},{"key":"14931_CR9","doi-asserted-by":"publisher","first-page":"166","DOI":"10.1016\/j.jpeds.2019.10.068","volume":"218","author":"LN Cohn","year":"2020","unstructured":"Cohn LN, Pechlivanoglou P, Lee Y, Mahant S, Orkin J, Marson A, et al. Health outcomes of parents of children with chronic illness: A systematic review and meta-analysis. J Pediatr. 2020;218:166\u2013e1772. https:\/\/doi.org\/10.1016\/j.jpeds.2019.10.068.","journal-title":"J Pediatr"},{"issue":"5","key":"14931_CR10","doi-asserted-by":"publisher","first-page":"368","DOI":"10.1097\/MLR.0000000000001702","volume":"60","author":"W Camelo Castillo","year":"2022","unstructured":"Camelo Castillo W, Onasanya O, dosReis S, Hogans B, Reeves G. Caregiver burden in caregivers of children with special health care needs and association with chronic pain. Med Care. 2022;60(5):368\u201374. https:\/\/doi.org\/10.1097\/MLR.0000000000001702.","journal-title":"Med Care"},{"key":"14931_CR11","doi-asserted-by":"publisher","unstructured":"Bamber MD, Solatikia F, Gaillard P, Spratling R. Caregiver burden and inflammation in parents of children with special healthcare needs. Discov Psychol. 2023;3(29). https:\/\/doi.org\/10.1007\/s44202-023-00089-z.","DOI":"10.1007\/s44202-023-00089-z"},{"key":"14931_CR12","doi-asserted-by":"publisher","unstructured":"AARP. Caregiving in the United States 2020 [Internet], Washington DC. 2020 May. Available from: https:\/\/doi.org\/10.26419\/ppi.00103.001","DOI":"10.26419\/ppi.00103.001"},{"key":"14931_CR13","unstructured":"Child and Adolescent Health Measurement Initiative. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB) [Internet]. [cited 2025 Apr 22]. 2020\u20132021 National Survey of Children\u2019s Health (NSCH) data query: National Outcome Measure 17.1 \u2014 Percent of children with special health care needs, Illinois [Data set]. Available from: https:\/\/www.childhealthdata.org\/browse\/survey\/archive2021\/results?q=9611&r=15"},{"issue":"5","key":"14931_CR14","doi-asserted-by":"publisher","first-page":"e1030","DOI":"10.1542\/peds.2008-0582","volume":"122","author":"J Hatzmann","year":"2008","unstructured":"Hatzmann J, Heymans HSA, Ferrer-i-Carbonell A, van Praag BMS, Grootenhuis MA. Hidden consequences of success in pediatrics: Parental health-related quality of life\u2014Results from the Care Project. Pediatrics. 2008;122(5):e1030\u20138. https:\/\/doi.org\/10.1542\/peds.2008-0582.","journal-title":"Pediatrics"},{"key":"14931_CR15","doi-asserted-by":"publisher","unstructured":"Rosenberg AR, Pickles DM, Simmons Harris D, Lannon CM, Houtrow A, Boat T et al. Supporting the well-being of children and youth with special health care needs: NASEM proceedings. Pediatrics. 2024;154(6):e2024067032. https:\/\/doi.org\/10.1542\/peds.2024-067032","DOI":"10.1542\/peds.2024-067032"},{"key":"14931_CR16","unstructured":"U.S. Department of Agriculture, Economic Research Service. Rural-Urban Continuum Codes [Internet]. 2024. Available from: https:\/\/www.ers.usda.gov\/data-products\/rural-urban-continuum-codes\/documentation"},{"issue":"9","key":"14931_CR17","doi-asserted-by":"publisher","first-page":"1277","DOI":"10.1177\/1049732305276687","volume":"15","author":"HF Hsieh","year":"2005","unstructured":"Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277\u201388. https:\/\/doi.org\/10.1177\/1049732305276687.","journal-title":"Qual Health Res"},{"issue":"3","key":"14931_CR18","doi-asserted-by":"publisher","first-page":"255","DOI":"10.1089\/pop.2018.0094","volume":"22","author":"R Miller","year":"2019","unstructured":"Miller R, Tumin D, Hayes D, Uffman JC, Raman VT, Tobias JD. Unmet need for care coordination among children with special health care needs. Popul Health Manag. 2019;22(3):255\u201361. https:\/\/doi.org\/10.1089\/pop.2018.0094.","journal-title":"Popul Health Manag"},{"key":"14931_CR19","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;15:1110\u20138. https:\/\/doi.org\/10.1007\/s10995-010-0658-8.","journal-title":"Matern Child Health J"},{"issue":"2","key":"14931_CR20","doi-asserted-by":"publisher","first-page":"136","DOI":"10.1016\/j.acap.2010.12.014","volume":"11","author":"KA Kuhlthau","year":"2011","unstructured":"Kuhlthau KA, Bloom S, Van Cleave J, Knapp AA, Romm D, Klatka K, et al. Evidence for family-centered care for children with special health care needs: A systematic review. Acad Pediatr. 2011;11(2):136\u2013e1438. https:\/\/doi.org\/10.1016\/j.acap.2010.12.014.","journal-title":"Acad Pediatr"},{"key":"14931_CR21","doi-asserted-by":"publisher","first-page":"S428","DOI":"10.1542\/peds.2009-1255O","volume":"124","author":"RM Turchi","year":"2009","unstructured":"Turchi RM, Berhane Z, Bethell C, Pomponio A, Antonelli R, Minkovitz CS. Care coordination for CSHCN: Associations with family-provider relations and family\/child outcomes. Pediatrics. 2009;124:S428\u201334. https:\/\/doi.org\/10.1542\/peds.2009-1255O.","journal-title":"Pediatrics"},{"key":"14931_CR22","unstructured":"Child and Adolescent Health Measurement Initiative. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB) [Internet]. [cited 2025 Jun 22]. 2022\u20132023 National Survey of Children\u2019s Health (NSCH) data query. Effective care coordination, among children who needed it, Illinois [dataset]. Available from: https:\/\/www.childhealthdata.org\/browse\/survey\/results?q=11141&r=15"},{"key":"14931_CR23","unstructured":"Illinois Department of Healthcare and Family Services. Managed care contracts [Internet]. 2025 [cited 2025 Sep 24]. Available from: https:\/\/hfs.illinois.gov\/medicalproviders\/cc\/managedcarecontracts.html"},{"key":"14931_CR24","doi-asserted-by":"publisher","first-page":"88","DOI":"10.1016\/j.pedn.2018.09.009","volume":"43","author":"JW McAllister","year":"2018","unstructured":"McAllister JW, Keehn RM, Rodgers R, Lock TM. Care coordination using a shared plan of care approach: From model to practice. J Pediatr Nurs. 2018;43:88\u201396. https:\/\/doi.org\/10.1016\/j.pedn.2018.09.009.","journal-title":"J Pediatr Nurs"},{"issue":"6","key":"14931_CR25","doi-asserted-by":"publisher","first-page":"e20170956","DOI":"10.1542\/peds.2017-0956","volume":"139","author":"RC Adams","year":"2017","unstructured":"Adams RC, Levy SE, Council on Children with Disabilities. Shared decision-making and children with disabilities: Pathways to consensus. Pediatrics. 2017;139(6):e20170956. https:\/\/doi.org\/10.1542\/peds.2017-0956.","journal-title":"Pediatrics"},{"issue":"12","key":"14931_CR26","doi-asserted-by":"publisher","first-page":"1398","DOI":"10.1177\/0009922818783501","volume":"57","author":"A Cordeiro","year":"2018","unstructured":"Cordeiro A, Davis RK, Antonelli R, Rosenberg H, Kim J, Berhane Z, et al. Care coordination for children and youth with special health care needs: National survey results. Clin Pediatr (Phila). 2018;57(12):1398\u2013408. https:\/\/doi.org\/10.1177\/0009922818783501.","journal-title":"Clin Pediatr (Phila)"},{"issue":"5","key":"14931_CR27","doi-asserted-by":"publisher","first-page":"661","DOI":"10.1016\/j.pedn.2015.07.003","volume":"30","author":"MR Ciccarelli","year":"2015","unstructured":"Ciccarelli MR, Gladstone EB, Armstrong Richardson EAJ. Implementation of a transdisciplinary team for the transition support of medically and socially complex youth. J Pediatr Nurs. 2015;30(5):661\u20137. https:\/\/doi.org\/10.1016\/j.pedn.2015.07.003.","journal-title":"J Pediatr Nurs"},{"issue":"5","key":"14931_CR28","doi-asserted-by":"publisher","first-page":"628","DOI":"10.1016\/S0003-9993(00)90047-9","volume":"81","author":"S Berman","year":"2000","unstructured":"Berman S, Miller AC, Rosen C, Bicchieri S. Assessment training and team functioning for treating children with disabilities. Arch Phys Med Rehabil. 2000;81(5):628\u201333. https:\/\/doi.org\/10.1016\/S0003-9993(00)90047-9.","journal-title":"Arch Phys Med Rehabil"},{"issue":"5","key":"14931_CR29","doi-asserted-by":"publisher","first-page":"834","DOI":"10.1111\/cch.13149","volume":"49","author":"G Currie","year":"2023","unstructured":"Currie G, Materula D, Gall N, Lachuk G, Richard C, Yohemas M, et al. Care coordination of children with neurodevelopmental disabilities and medical complexity during the COVID-19 pandemic: Caregiver experiences. Child. 2023;49(5):834\u201345. https:\/\/doi.org\/10.1111\/cch.13149.","journal-title":"Child"},{"issue":"3","key":"14931_CR30","doi-asserted-by":"publisher","first-page":"269","DOI":"10.1007\/s11606-015-3489-x","volume":"31","author":"JM Polinski","year":"2016","unstructured":"Polinski JM, Barker T, Gagliano N, Sussman A, Brennan TA, Shrank WH. Patients\u2019 satisfaction with and preference for telehealth visits. J Gen Intern Med. 2016;31(3):269\u201375. https:\/\/doi.org\/10.1007\/s11606-015-3489-x.","journal-title":"J Gen Intern Med"},{"key":"14931_CR31","unstructured":"Centers for Medicare and Medicaid Services. COVID-19 Emergency declaration blanket waivers for health care providers [Internet], Baltimore MD. 2022 Oct [cited 2025 Jun 29]. Available from: https:\/\/www.cms.gov\/files\/document\/covid-19-emergency-declaration-waivers.pdf"},{"key":"14931_CR32","unstructured":"Telehealth.HHS.gov [Internet]. Health Resources & Services Administration. 2026 [cited 2026 Apr 20]. Telehealth policy updates. Available from: https:\/\/telehealth.hhs.gov\/providers\/telehealth-policy\/telehealth-policy-updates"},{"key":"14931_CR33","doi-asserted-by":"publisher","unstructured":"National Academies of Sciences, Engineering, and Medicine. The future pediatric subspecialty physician workforce: Meeting the needs of infants, children, and adolescents [Internet]. Washington, D.C.: National Academies Press. 2023 Dec [cited 2025 Jun 2]. Available from: https:\/\/www.nap.edu\/catalog\/27207https:\/\/doi.org\/10.17226\/27207","DOI":"10.17226\/27207"},{"issue":"2","key":"14931_CR34","doi-asserted-by":"publisher","first-page":"e2024067966","DOI":"10.1542\/peds.2024-067966","volume":"155","author":"C Foster","year":"2025","unstructured":"Foster C, Lin E, Feinstein JA, Seltzer R, Graham RJ, Coleman C, et al. Home health care research for children with disability and medical complexity. Pediatrics. 2025;155(2):e2024067966. https:\/\/doi.org\/10.1542\/peds.2024-067966.","journal-title":"Pediatrics"},{"issue":"4","key":"14931_CR35","doi-asserted-by":"publisher","first-page":"287","DOI":"10.1177\/10848223231167878","volume":"35","author":"CC Foster","year":"2023","unstructured":"Foster CC, Morales L, Fawcett AJ, Coleman CL. Access and quality of pediatric home healthcare: A systematic review. HHCMP. 2023;35(4):287\u201398. https:\/\/doi.org\/10.1177\/10848223231167878.","journal-title":"HHCMP"},{"issue":"1","key":"14931_CR36","doi-asserted-by":"publisher","first-page":"24","DOI":"10.1016\/j.pedhc.2024.08.010","volume":"39","author":"D Geyer","year":"2025","unstructured":"Geyer D, Flanagan JM, van de Water B, McCarthy S, Vessey JA. A qualitative descriptive study exploring the systemic challenges of caring for children with medical complexity at home. J Pediatr Health. 2025;39(1):24\u201332. https:\/\/doi.org\/10.1016\/j.pedhc.2024.08.010.","journal-title":"J Pediatr Health"},{"issue":"10","key":"14931_CR37","doi-asserted-by":"publisher","first-page":"e2239270","DOI":"10.1001\/jamanetworkopen.2022.39270","volume":"5","author":"JD Kusma","year":"2022","unstructured":"Kusma JD, Davis MM, Foster C. Characteristics of Medicaid policies for children with medical complexity by state: A qualitative study. JAMA Netw Open. 2022;5(10):e2239270. https:\/\/doi.org\/10.1001\/jamanetworkopen.2022.39270.","journal-title":"JAMA Netw Open"},{"issue":"5","key":"14931_CR38","doi-asserted-by":"publisher","first-page":"352","DOI":"10.1097\/DBP.0000000000000167","volume":"36","author":"C Caicedo","year":"2015","unstructured":"Caicedo C. Health and functioning of families of children with special health care needs cared for in home care, long-term care, and medical day care settings. J Dev Behav Pediatr. 2015;36(5):352\u201361. 10. 1097\/DBP.0000000000000167 PubMed PMID: 25933227.","journal-title":"J Dev Behav Pediatr"},{"issue":"3","key":"14931_CR39","doi-asserted-by":"publisher","first-page":"e2020035378","DOI":"10.1542\/peds.2020-035378","volume":"148","author":"CC Foster","year":"2021","unstructured":"Foster CC, Chorniy A, Kwon S, Kan K, Heard-Garris N, Davis MM. Children with special health care needs and forgone family employment. Pediatrics. 2021;148(3):e2020035378. https:\/\/doi.org\/10.1542\/peds.2020-035378.","journal-title":"Pediatrics"},{"key":"14931_CR40","unstructured":"Illinois General Assembly. Illinois Human Rights Act. 775 ILCS 5\/2-101 [Internet]. 2025 Jan 1. Available from: https:\/\/ilga.gov\/documents\/legislation\/publicacts\/103\/PDF\/103-0797.pdf"},{"key":"14931_CR41","unstructured":"Illinois Department of Healthcare and Family Services. 1915(i) State plan Home and Community-Based Services Administration and Operation [Internet]. 2025 [cited 2025 Jul 8]. Available from: https:\/\/hfs.illinois.gov\/content\/dam\/soi\/en\/web\/hfs\/sitecollectiondocuments\/1915ifamcghhas12312024.pdf"},{"issue":"5","key":"14931_CR42","first-page":"381","volume":"30","author":"LS Baum","year":"2004","unstructured":"Baum LS. Internet parent support groups for primary caregivers of a child with special health care needs. Pediatr Nurs. 2004;30(5):381\u2013401. PubMed PMID: 15587531.","journal-title":"Pediatr Nurs"},{"issue":"4","key":"14931_CR43","doi-asserted-by":"publisher","first-page":"203","DOI":"10.1207\/s15326918cs0404_04","volume":"4","author":"HT Ireys","year":"2001","unstructured":"Ireys HT, Chernoff R, Stein REK, DeVet KA, Silver EJ. Outcomes of community-based family-to-family support: Lessons learned from a decade of randomized trials. Children\u2019s Serv. 2001;4(4):203\u201316. https:\/\/doi.org\/10.1207\/s15326918cs0404_04.","journal-title":"Children\u2019s Serv"},{"key":"14931_CR44","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. https:\/\/doi.org\/10.1016\/j.pedn.2022.05.008.","journal-title":"J Pediatr Nurs"},{"key":"14931_CR45","doi-asserted-by":"publisher","first-page":"95","DOI":"10.1186\/s12913-025-13899-9","volume":"26","author":"L Hickey","year":"2026","unstructured":"Hickey L, Nguyen HTD, Bornemisza A, Sutherland I, Shepherd D, Lucia A, et al. Supporting parents to care for a child with neurodevelopmental disability: Exploring parents\u2019 perspectives and experiences of a health service. BMC Health Serv Res. 2026;26:95. https:\/\/doi.org\/10.1186\/s12913-025-13899-9.","journal-title":"BMC Health Serv Res"},{"issue":"4","key":"14931_CR46","doi-asserted-by":"publisher","first-page":"1925","DOI":"10.1353\/hpu.2022.0146","volume":"33","author":"M Mirza","year":"2022","unstructured":"Mirza M, Keating E, Krischer A, Pinto J. Care coordination experiences of low-income parents of children and youth with special health care needs: An exploratory study. J Health Care Poor Underserved. 2022;33(4):1925\u201348. https:\/\/doi.org\/10.1353\/hpu.2022.0146.","journal-title":"J Health Care Poor Underserved"},{"issue":"4","key":"14931_CR47","doi-asserted-by":"publisher","first-page":"922","DOI":"10.1016\/S0885-3924(03)00327-0","volume":"26","author":"JF Deeken","year":"2003","unstructured":"Deeken JF, Taylor KL, Mangan P, Yabroff KR, Ingham JM. Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. J Pain Symptom Manage. 2003;26(4):922\u201353. https:\/\/doi.org\/10.1016\/S0885-3924(03)00327-0.","journal-title":"J Pain Symptom Manage"},{"key":"14931_CR48","doi-asserted-by":"publisher","first-page":"190","DOI":"10.1016\/j.cppeds.2017.07.003","volume":"47","author":"M Pilapil","year":"2017","unstructured":"Pilapil M, Coletti DJ, Rabey C, DeLaet D. Caring for the caregiver: Supporting families of youth with special health care needs. Curr Probl Pediatr Adolesc Health Care. 2017;47:190\u20139. https:\/\/doi.org\/10.1016\/j.cppeds.2017.07.003.","journal-title":"Curr Probl Pediatr Adolesc Health Care"},{"issue":"32","key":"14931_CR49","doi-asserted-by":"publisher","first-page":"1373","DOI":"10.11124\/jbisrir-2009-213","volume":"7","author":"KJ Whalen","year":"2009","unstructured":"Whalen KJ, Buchholz SW. The reliability, validity and feasibility of tools used to screen for caregiver burden: A systematic review. JBI Libr Syst Rev. 2009;7(32):1373\u2013430. https:\/\/doi.org\/10.11124\/jbisrir-2009-213.","journal-title":"JBI Libr Syst Rev"},{"issue":"4","key":"14931_CR50","doi-asserted-by":"publisher","first-page":"258","DOI":"10.30476\/IJCBNM.2019.73893.0","volume":"7","author":"M Adib-Hajbaghery","year":"2019","unstructured":"Adib-Hajbaghery M, Ahmadi B. Caregiver burden and its associated factors in caregivers of children and adolescents with chronic conditions. IJCBNM. 2019;7(4):258\u201369. https:\/\/doi.org\/10.30476\/IJCBNM.2019.73893.0.","journal-title":"IJCBNM"}],"container-title":["BMC Health Services Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12913-026-14931-2","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12913-026-14931-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12913-026-14931-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T22:58:37Z","timestamp":1787093917000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1186\/s12913-026-14931-2"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,6,11]]},"references-count":50,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["14931"],"URL":"https:\/\/doi.org\/10.1186\/s12913-026-14931-2","relation":{},"ISSN":["1472-6963"],"issn-type":[{"value":"1472-6963","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6,11]]},"assertion":[{"value":"27 April 2026","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"5 June 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"11 June 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"This study was designated as exempt in accordance with federal guidelines from the Institutional Review Board at the University of Illinois Chicago (Reference Number: 2023\u2009\u2212\u20091455). All study procedures were conducted in accordance with institutional guidelines and the Declaration of Helsinki. All participants provided verbal informed consent for participation and for the audio-recording prior to the start of each FGD. Clinical trial number: not applicable.","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":"1149"}}