{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,4]],"date-time":"2026-08-04T10:35:01Z","timestamp":1785839701913,"version":"3.56.0"},"reference-count":36,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2023,10,19]],"date-time":"2023-10-19T00:00:00Z","timestamp":1697673600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,10,19]],"date-time":"2023-10-19T00:00:00Z","timestamp":1697673600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100007051","name":"Uppsala University","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100007051","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Pediatr Rheumatol"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Insights into the immunological role of the gastrointestinal tract in autoimmune conditions have led to the investigation of diet as a potential adjunctive treatment option for juvenile idiopathic arthritis (JIA). The specific carbohydrate diet (SCD) has shown promising results. However, studies on participants\u2019 experiences of dietary interventions in JIA are rare. In this study we investigated the experiences of children and parents\u2019 who had participated in a four-week intervention with SCD aiming to examine the potential anti-inflammatory effects.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Objectives<\/jats:title>\n                <jats:p>To conduct a qualitative evaluation exploring children\u2019s and parents\u2019 experiences of the dietary intervention, how they navigated challenges, and their support requirements.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Semi-structured interviews were conducted with 12 children and 15 parents from 13 families, who were interviewed individually and together. The transcripts were analysed using systematic text condensation.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Most participants interviewed found the intervention beneficial, with 12 out of 13 reporting positive effects, such as reduced pain and morning stiffness, and improved gastrointestinal function. Many participants reported being willing to repeat the intervention in the current form. Despite facing challenges, all children followed the diet for one to three months, with some continuing to follow a modified version. Facing the socio-emotional consequences of adhering to the diet was challenging for children. These were handled by focusing on the positive aspects and by relying on the supportive environment available. Parents struggled with practical issues since the diet required hard work, time, and money. Areas identified as requiring additional support include finding simple, quick, and child-friendly solutions, strengthening organizational food skills such as meal planning, and preparation prior to starting the intervention regarding socio-emotional aspects.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>Navigating the dietary treatment was considered challenging, practically for the parents and socio-emotionally for the children. Based on the reported challenges and participants\u2019 suggestions the intervention could be optimised by providing support and solutions in relation to the practical issues and better preparation regarding dealing with the socio-emotional consequences. Despite the difficulties, the participants reported overall positive experiences of, and attitudes towards, the current setup. Consequently, dietary interventions, such as the SCD, may be regarded as suitable targets for further research.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12969-023-00914-8","type":"journal-article","created":{"date-parts":[[2023,10,19]],"date-time":"2023-10-19T16:01:42Z","timestamp":1697731302000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["A qualitative evaluation of the specific carbohydrate diet for juvenile idiopathic arthritis based on children\u2019s and parents\u2019 experiences"],"prefix":"10.1186","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8905-4475","authenticated-orcid":false,"given":"Naima","family":"Hagstr\u00f6m","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elin","family":"L\u00f6vestam","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Afsaneh","family":"Koochek","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lillemor","family":"Berntson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2023,10,19]]},"reference":[{"issue":"10","key":"914_CR1","first-page":"2275","volume":"30","author":"L Berntson","year":"2003","unstructured":"Berntson L, Andersson Gare B, Fasth A, Herlin T, Kristinsson J, Lahdenne P, et al. Incidence of juvenile idiopathic arthritis in the nordic countries. A population based study with special reference to the validity of the ILAR and EULAR criteria. J Rheumatol. 2003;30(10):2275\u201382.","journal-title":"J Rheumatol"},{"issue":"9","key":"914_CR2","doi-asserted-by":"publisher","first-page":"1392","DOI":"10.1002\/acr.21695","volume":"64","author":"A Tong","year":"2012","unstructured":"Tong A, Jones J, Craig JC, Singh-Grewal D. Children\u2019s experiences of living with juvenile idiopathic arthritis: a thematic synthesis of qualitative studies. Arthritis Care Res. 2012;64(9):1392\u2013404.","journal-title":"Arthritis Care Res"},{"issue":"5","key":"914_CR3","doi-asserted-by":"publisher","first-page":"277","DOI":"10.1002\/acr2.11549","volume":"5","author":"B Delcoigne","year":"2023","unstructured":"Delcoigne B, Horne A, Reutfors J, Askling J. Risk of Psychiatric disorders in Juvenile Idiopathic Arthritis: Population- and sibling-controlled cohort and cross-sectional analyses. ACR open Rheumatology. 2023;5(5):277\u201384.","journal-title":"ACR open Rheumatology"},{"issue":"4","key":"914_CR4","doi-asserted-by":"publisher","first-page":"507","DOI":"10.1002\/acr.23853","volume":"72","author":"M Glerup","year":"2020","unstructured":"Glerup M, Rypdal V, Arnstad ED, Ekelund M, Peltoniemi S, Aalto K, et al. Long-term outcomes in juvenile idiopathic arthritis: eighteen years of Follow\u2010Up in the Population\u2010Based Nordic Juvenile Idiopathic Arthritis Cohort. Arthritis Care Res. 2020;72(4):507\u201316.","journal-title":"Arthritis Care Res"},{"issue":"12","key":"914_CR5","doi-asserted-by":"publisher","first-page":"3727","DOI":"10.1093\/rheumatology\/keaa118","volume":"59","author":"A Chhabra","year":"2020","unstructured":"Chhabra A, Robinson C, Houghton K, Cabral DA, Morishita K, Tucker LB, et al. Long-term outcomes and Disease course of children with juvenile idiopathic arthritis in the ReACCh-Out cohort: a two-centre experience. Rheumatology (Oxford). 2020;59(12):3727.","journal-title":"Rheumatology (Oxford)"},{"issue":"SI2","key":"914_CR6","doi-asserted-by":"publisher","first-page":"I170","DOI":"10.1093\/rheumatology\/keac299","volume":"62","author":"MMA Kip","year":"2022","unstructured":"Kip MMA, de Roock S, Currie G, Marshall DA, Grazziotin LR, Twilt M, et al. Pharmacological treatment patterns in patients with juvenile idiopathic arthritis in the Netherlands: a real-world data analysis. Rheumatology (Oxford). 2022;62(SI2):I170\u2013SI80.","journal-title":"Rheumatology (Oxford)"},{"issue":"3","key":"914_CR7","doi-asserted-by":"publisher","first-page":"521","DOI":"10.3899\/jrheum.140348","volume":"42","author":"M Arvonen","year":"2015","unstructured":"Arvonen M, Virta LJ, Pokka T, Kr\u00f6ger L, V\u00e4h\u00e4salo P. Repeated exposure to Antibiotics in Infancy: a predisposing factor for juvenile idiopathic arthritis or a sign of this Group\u2019s Greater susceptibility to Infections? J Rhuematol. 2015;42(3):521\u20136.","journal-title":"J Rhuematol"},{"issue":"1","key":"914_CR8","doi-asserted-by":"publisher","first-page":"46","DOI":"10.1186\/s12969-017-0175-z","volume":"15","author":"E Kindgren","year":"2017","unstructured":"Kindgren E, Fredrikson M, Ludvigsson J. Early feeding and risk of juvenile idiopathic arthritis: a case control study in a prospective birth cohort. Pediatr Rheumatol. 2017;15(1):46.","journal-title":"Pediatr Rheumatol"},{"issue":"12","key":"914_CR9","doi-asserted-by":"publisher","first-page":"885","DOI":"10.1038\/s41575-021-00512-7","volume":"18","author":"M Wolter","year":"2021","unstructured":"Wolter M, Grant ET, Boudaud M, Steimle A, Pereira GV, Martens EC, et al. Leveraging diet to engineer the gut microbiome. Nat Reviews Gastroenterol Hepatol. 2021;18(12):885\u2013902.","journal-title":"Nat Reviews Gastroenterol Hepatol"},{"issue":"1","key":"914_CR10","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1186\/s12887-022-03810-4","volume":"23","author":"N Zare","year":"2023","unstructured":"Zare N, Mansoubi M, Coe S, Najafi AA, Bailey K, Harrison K, et al. An investigation into the relationship between nutritional status, dietary intake, symptoms and health-related quality of life in children and young people with juvenile idiopathic arthritis: a systematic review and meta-analysis. BMC Pediatr. 2023;23(1):3.","journal-title":"BMC Pediatr"},{"issue":"1","key":"914_CR11","doi-asserted-by":"publisher","first-page":"88","DOI":"10.1186\/s12969-021-00577-3","volume":"19","author":"L Berntson","year":"2021","unstructured":"Berntson L. A pilot study of possible anti-inflammatory effects of the specific carbohydrate diet in children with juvenile idiopathic arthritis. Pediatr Rheumatol Online J. 2021;19(1):88.","journal-title":"Pediatr Rheumatol Online J"},{"issue":"2","key":"914_CR12","doi-asserted-by":"publisher","first-page":"155","DOI":"10.1097\/MCG.0000000000000772","volume":"52","author":"DL Suskind","year":"2018","unstructured":"Suskind DL, Cohen SA, Brittnacher MJ, Wahbeh G, Lee D, Shaffer ML, et al. Clinical and fecal microbial changes with Diet Therapy in active inflammatory bowel Disease. J Clin Gastroenterol. 2018;52(2):155\u201363.","journal-title":"J Clin Gastroenterol"},{"issue":"4","key":"914_CR13","doi-asserted-by":"publisher","first-page":"418","DOI":"10.1016\/j.nut.2015.08.025","volume":"32","author":"C Obih","year":"2016","unstructured":"Obih C, Wahbeh G, Lee D, Braly K, Giefer M, Shaffer ML, et al. Specific carbohydrate diet for pediatric inflammatory bowel Disease in clinical practice within an academic IBD center. Nutrition. 2016;32(4):418\u201325.","journal-title":"Nutrition"},{"issue":"3","key":"914_CR14","doi-asserted-by":"publisher","first-page":"e239","DOI":"10.1097\/PG9.0000000000000239","volume":"3","author":"NRM Schwartz","year":"2022","unstructured":"Schwartz NRM, McNichol SR, Devine B, Phipps AI, Roth JA, Suskind DL. Assessing barriers to use of the Specific Carbohydrate Diet in Pediatric Inflammatory Bowel Disease: a qualitative study. JPGN Rep. 2022;3(3):e239.","journal-title":"JPGN Rep"},{"issue":"3","key":"914_CR15","doi-asserted-by":"publisher","first-page":"e222","DOI":"10.1097\/PG9.0000000000000222","volume":"3","author":"N Rivera","year":"2022","unstructured":"Rivera N, Nguyen K, Kalami V, Blankenburg R, Ming Yeh A. Perspectives on specific carbohydrate Diet Education from Inflammatory Bowel Disease patients and caregivers: a needs Assessment. JPGN Rep. 2022;3(3):e222.","journal-title":"JPGN Rep"},{"issue":"1","key":"914_CR16","doi-asserted-by":"publisher","first-page":"32","DOI":"10.1186\/s40814-015-0026-y","volume":"1","author":"A O\u2019Cathain","year":"2015","unstructured":"O\u2019Cathain A, Hoddinott P, Lewin S, Thomas KJ, Young B, Adamson J, et al. Maximising the impact of qualitative research in feasibility studies for randomised controlled trials: guidance for researchers. Pilot and Feasibility Studies. 2015;1(1):32.","journal-title":"Pilot and Feasibility Studies"},{"key":"914_CR17","doi-asserted-by":"publisher","first-page":"n2061","DOI":"10.1136\/bmj.n2061","volume":"374","author":"K Skivington","year":"2021","unstructured":"Skivington K, Matthews L, Simpson SA, Craig P, Baird J, Blazeby JM, et al. A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ. 2021;374:n2061.","journal-title":"BMJ"},{"issue":"6","key":"914_CR18","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","volume":"19","author":"A Tong","year":"2007","unstructured":"Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349\u201357.","journal-title":"Int J Qual Health Care"},{"key":"914_CR19","first-page":"833","volume-title":"Qualitative Research & Evaluation Methods: integrating theory and practice","author":"MQ Patton","year":"2014","unstructured":"Patton MQ. Qualitative Research & Evaluation Methods: integrating theory and practice. 4 ed. Thousand Oaks, California: SAGE Publications; 2014. p. 833. 2014-10-29.","edition":"4"},{"issue":"13","key":"914_CR20","doi-asserted-by":"publisher","first-page":"1753","DOI":"10.1177\/1049732315617444","volume":"26","author":"K Malterud","year":"2016","unstructured":"Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies. Qual Health Res. 2016;26(13):1753\u201360.","journal-title":"Qual Health Res"},{"issue":"2","key":"914_CR21","doi-asserted-by":"publisher","first-page":"177","DOI":"10.1002\/(SICI)1098-240X(199904)22:2<177::AID-NUR9>3.0.CO;2-H","volume":"22","author":"S Docherty","year":"1999","unstructured":"Docherty S, Sandelowski M. Focus on qualitative methods: interviewing children. Res Nurs Health. 1999;22(2):177\u201385.","journal-title":"Res Nurs Health"},{"issue":"2","key":"914_CR22","first-page":"390","volume":"31","author":"RE Petty","year":"2004","unstructured":"Petty RE, Southwood TR, Manners P, Baum J, Glass DN, Goldenberg J, et al. International League of Associations for Rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001. J Rhuematol. 2004;31(2):390\u20132.","journal-title":"J Rhuematol"},{"issue":"8","key":"914_CR23","doi-asserted-by":"publisher","first-page":"795","DOI":"10.1177\/1403494812465030","volume":"40","author":"K Malterud","year":"2012","unstructured":"Malterud K. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health. 2012;40(8):795\u2013805.","journal-title":"Scand J Public Health"},{"issue":"1","key":"914_CR24","doi-asserted-by":"publisher","first-page":"12","DOI":"10.1186\/s12966-017-0461-7","volume":"14","author":"P Ducrot","year":"2017","unstructured":"Ducrot P, M\u00e9jean C, Aroumougame V, Ibanez G, All\u00e8s B, Kesse-Guyot E, et al. Meal planning is associated with food variety, diet quality and body weight status in a large sample of French adults. Int J Behav Nutr Phys Activity. 2017;14(1):12.","journal-title":"Int J Behav Nutr Phys Activity"},{"issue":"3","key":"914_CR25","doi-asserted-by":"publisher","first-page":"189","DOI":"10.1016\/j.jneb.2010.03.006","volume":"43","author":"JA Fulkerson","year":"2011","unstructured":"Fulkerson JA, Kubik MY, Rydell S, Boutelle KN, Garwick A, Story M, et al. Focus Groups with Working Parents of School-aged children: what\u2019s needed to Improve Family meals? J Nutr Educ Behav. 2011;43(3):189\u201393.","journal-title":"J Nutr Educ Behav"},{"key":"914_CR26","doi-asserted-by":"publisher","first-page":"115","DOI":"10.1016\/j.appet.2015.11.007","volume":"98","author":"S Virudachalam","year":"2016","unstructured":"Virudachalam S, Chung PJ, Faerber JA, Pian TM, Thomas K, Feudtner C. Quantifying parental preferences for interventions designed to improve home food preparation and home food environments during early childhood. Appetite. 2016;98:115\u201324.","journal-title":"Appetite"},{"issue":"7","key":"914_CR27","doi-asserted-by":"publisher","first-page":"1339","DOI":"10.1016\/j.jand.2021.01.001","volume":"121","author":"A Kopetsky","year":"2021","unstructured":"Kopetsky A, Baker S, Hobbs K, Robson S. Understanding mothers\u2019 perceptions of Food skills: a qualitative study. J Acad Nutr Dietetics. 2021;121(7):1339\u201349e2.","journal-title":"J Acad Nutr Dietetics"},{"issue":"8","key":"914_CR28","doi-asserted-by":"publisher","first-page":"1525","DOI":"10.1016\/j.jand.2022.02.015","volume":"122","author":"AK Fultz","year":"2022","unstructured":"Fultz AK, Baker S, Anderson Steeves E, Trabulsi J, Alvarado AV, Robson SM. Feasibility of implementing a food skills intervention. J Acad Nutr Dietetics. 2022;122(8):1525\u201333e4.","journal-title":"J Acad Nutr Dietetics"},{"key":"914_CR29","doi-asserted-by":"publisher","first-page":"104592","DOI":"10.1016\/j.appet.2020.104592","volume":"148","author":"T Ragelien\u0117","year":"2020","unstructured":"Ragelien\u0117 T, Gr\u00f8nh\u00f8j A. The influence of peers\u2032 and siblings\u2032 on children\u2019s and adolescents\u2032 healthy eating behavior. A systematic literature review. Appetite. 2020;148:104592.","journal-title":"Appetite"},{"issue":"3","key":"914_CR30","doi-asserted-by":"publisher","first-page":"657","DOI":"10.1037\/pspi0000223","volume":"119","author":"K Woolley","year":"2020","unstructured":"Woolley K, Fishbach A, Wang R. Food restriction and the experience of social isolation. J Personal Soc Psychol. 2020;119(3):657\u201371.","journal-title":"J Personal Soc Psychol"},{"key":"914_CR31","doi-asserted-by":"publisher","first-page":"666275","DOI":"10.3389\/fpsyg.2021.666275","volume":"12","author":"EO Wakefield","year":"2021","unstructured":"Wakefield EO, Puhl RM, Litt MD, Zempsky WT. If it ever really hurts, I try not to let them know: the Use of Concealment as a Coping Strategy among adolescents with Chronic Pain. Front Psychol. 2021;12:666275.","journal-title":"Front Psychol"},{"issue":"1","key":"914_CR32","doi-asserted-by":"publisher","first-page":"47","DOI":"10.1016\/j.apnr.2010.02.005","volume":"25","author":"R Spratling","year":"2012","unstructured":"Spratling R, Coke S, Minick P. Qualitative data collection with children. Appl Nurs Res. 2012;25(1):47\u201353.","journal-title":"Appl Nurs Res"},{"issue":"5","key":"914_CR33","doi-asserted-by":"publisher","first-page":"533","DOI":"10.1097\/MPG.0000000000001613","volume":"65","author":"K Braly","year":"2017","unstructured":"Braly K, Williamson N, Shaffer ML, Lee D, Wahbeh G, Klein J, et al. Nutritional adequacy of the specific Carbohydrate Diet in Pediatric Inflammatory Bowel Disease. J Pediatr Gastroenterol Nutr. 2017;65(5):533\u20138.","journal-title":"J Pediatr Gastroenterol Nutr"},{"key":"914_CR34","unstructured":"Lewis JD, Sandler R, Brotherton C, Brensinger C, Li H, Kappelman MD et al. A Randomized Trial Comparing the Specific Carbohydrate Diet to a Mediterranean Diet in Adults with Crohn\u2019s Disease. Gastroenterology. 2021."},{"issue":"6","key":"914_CR35","doi-asserted-by":"publisher","first-page":"757","DOI":"10.1080\/13645579.2021.1935565","volume":"25","author":"S Thunberg","year":"2022","unstructured":"Thunberg S, Arnell L. Pioneering the use of technologies in qualitative research \u2013 a research review of the use of digital interviews. Int J Soc Res Methodol. 2022;25(6):757\u201368.","journal-title":"Int J Soc Res Methodol"},{"key":"914_CR36","unstructured":"Lincoln YS, Guba EG, Naturalistic Inquiry SAGE. 1985 1985\u201304. 422 p."}],"container-title":["Pediatric Rheumatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12969-023-00914-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12969-023-00914-8\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12969-023-00914-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,11,22]],"date-time":"2023-11-22T03:37:15Z","timestamp":1700624235000},"score":1,"resource":{"primary":{"URL":"https:\/\/ped-rheum.biomedcentral.com\/articles\/10.1186\/s12969-023-00914-8"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,10,19]]},"references-count":36,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2023,12]]}},"alternative-id":["914"],"URL":"https:\/\/doi.org\/10.1186\/s12969-023-00914-8","relation":{},"ISSN":["1546-0096"],"issn-type":[{"value":"1546-0096","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,10,19]]},"assertion":[{"value":"19 August 2023","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"12 October 2023","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"19 October 2023","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"This study was performed in compliance with the Declaration of Helsinki. Ethical approval was initially obtained from the regional ethics committee in Uppsala (Dnr 2016\/263) Additional approvals were obtained from the Swedish Ethical Review Authority in 2020, 2021, and 2022 (Dnr 2020\u201301494; Dnr 2021\u2009\u2212\u200901612; Dnr 2022-04946-02). All participants signed an informed consent.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"127"}}