{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,29]],"date-time":"2026-10-29T03:49:19Z","timestamp":1793245759884,"version":"4.5.0"},"reference-count":51,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2022,4,18]],"date-time":"2022-04-18T00:00:00Z","timestamp":1650240000000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000331","name":"British Scoliosis Research Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000331","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Child Health Care"],"published-print":{"date-parts":[[2023,12]]},"abstract":"<jats:p>This study focussed on identifying the key concerns and information needs of young people with Adolescent Idiopathic Scoliosis (AIS) and their parents and examined what resources might help improve young people\u2019s \u2018participativeness\u2019 and health literacy during clinic consultations. A qualitative participatory design underpinned the study. Workshops involving multiple methods were used to engage with young people with AIS and their parents, who were recruited through a regional children\u2019s hospital. The study design was informed by patient and public consultation with eight young people and two parents. 10 young people (aged 14\u201316\u00a0years) and 11 of their parents participated in the study. Young people and their parents reported uncertainty and anxiety before coming to clinic and faced issues participating in the consultation, being involved in decision-making and understanding the information and language. These challenges resulted in unmet information needs. Young people\u2019s health literacy relating to an AIS diagnosis and treatment is facilitated by them being prepared and informed before coming to clinic and be actively supported to be involved during the consultation. We collaboratively developed the \u2018Coming to Spinal Clinic\u2019 resource to help young people with AIS and parents prepare for and get the most out of their visit.<\/jats:p>","DOI":"10.1177\/13674935221083767","type":"journal-article","created":{"date-parts":[[2022,4,18]],"date-time":"2022-04-18T06:19:30Z","timestamp":1650262770000},"page":"628-642","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":10,"title":["\u2018It\u2019s my back\u2026\u2019; developing the coming to spinal clinic resource to improve the health literacy of young people with adolescent idiopathic scoliosis and their parents"],"prefix":"10.1177","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8414-3233","authenticated-orcid":false,"given":"Lucy","family":"Bray","sequence":"first","affiliation":[{"name":"Faculty of Health Social Care and Medicine, Edge Hill University, Ormskirk, 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