{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T16:32:10Z","timestamp":1790785930527,"version":"4.1.0"},"reference-count":55,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2025,9,29]],"date-time":"2025-09-29T00:00:00Z","timestamp":1759104000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2025,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Many high\u2010income countries are seeking to adapt services to meet the needs of the growing population of children with medical complexity and their families but concerns have been raised about the quality of this care. To understand family caregivers' experiences of services and identify priorities for improvement we need to synthesise research about families' experiences of services for children with medical complexity.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>To systematically identify and synthesise the qualitative evidence of family caregivers' experiences of health, care and education services for children with medical complexity.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Systematic searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and ERIC from January 2011 to March 2024. Studies were assessed for methodological quality and data richness and synthesized using thematic synthesis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Seventy\u2010one studies met the eligibility criteria. A purposive sample of 29 studies was taken, selecting good\u2010quality papers with rich data. These studies described the experience of 524 family caregivers and focused mostly on hospital care and care in the home. No studies were identified that focused specifically on family caregivers' experiences of education or social care services. Most studies were from the United States and Canada. The overarching theme was \u2018concern for child's safety\u2019 with three subthemes: \u2018interactions with professionals\u2019, \u2018caring for the whole family\u2019 and \u2018system organisation\u2019.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Family caregivers' priority is maintaining their child's safety across all settings of care. Fragmented systems and difficulties trusting professionals exacerbate parents' stress and concern for their child's safety. To keep the child safe and well, services need to address the needs of the whole family (e.g., parental sleep and mental health, finances, housing). Future research is needed to address the gap in research on social care services and education.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient and Public Contribution<\/jats:title>\n                    <jats:p>Emerging findings of the review were discussed in a 2\u2010h workshop with six parents of children with medical complexity. The parents inputted into the development of the analytical themes and helped to shape the findings of the review.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70452","type":"journal-article","created":{"date-parts":[[2025,9,30]],"date-time":"2025-09-30T06:18:52Z","timestamp":1759213132000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Family Caregivers' Experiences of Services for Children With Medical Complexity: A Systematic Review and Qualitative Evidence Synthesis"],"prefix":"10.1111","volume":"28","author":[{"given":"Bethan","family":"Page","sequence":"first","affiliation":[{"name":"Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation King's College London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pru","family":"Holder","sequence":"additional","affiliation":[{"name":"Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation 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