{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,6]],"date-time":"2026-07-06T08:08:21Z","timestamp":1783325301037,"version":"3.54.6"},"reference-count":39,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2020,8,18]],"date-time":"2020-08-18T00:00:00Z","timestamp":1597708800000},"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":["Child"],"published-print":{"date-parts":[[2020,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Parents of children with congenital limb reduction deficiency have an essential role in making treatment decisions during their child's first years of life. Treatment options usually concern surgical and\/or prosthetic treatment. To tailor treatment options to fit different family values and priorities, the family\u2010centred approach indicates the importance of understanding the parental role in partnership with health care professionals. The aim of this study was to describe parents' experiences of their role in decision\u2010making and treatment for children with congenital limb reduction deficiency.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A descriptive design with a qualitative approach was used. Semi\u2010structured interviews were conducted with 17 parents (12 mothers and 5 fathers) of children with upper and\/or lower limb deficiency (mean age 5.9 years). The interview data were analysed using qualitative content analysis with an inductive approach.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Two major themes emerged from the data. The first theme, being a decision maker for someone else, was described as an ambivalent parental role, including collaboration within the family and with health care professionals. The second theme, becoming and being a treatment supporter in the child's everyday life, was made up of four categories: being a supporter of the child in everyday activities, mentoring the child to handle encounters with others, becoming a coordinator of information and being an \u2018extended arm\u2019 of the health care provision for the child.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>This study enhances our understanding of the parental role in decision\u2010making and treatment for children with congenital limb reduction deficiency. The results may contribute to the continued development of the family\u2010centred service approach by providing guidelines for treatment programmes, with the goal of improving decision support and broadening the support for parents during treatment for these children.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.12802","type":"journal-article","created":{"date-parts":[[2020,8,13]],"date-time":"2020-08-13T12:29:43Z","timestamp":1597321783000},"page":"723-732","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Swedish parents' experiences of their role in treatment for children with congenital limb reduction deficiency: Decision\u2010making and treatment support"],"prefix":"10.1111","volume":"46","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7670-0885","authenticated-orcid":false,"given":"Lis","family":"Sj\u00f6berg","sequence":"first","affiliation":[{"name":"School of Health Sciences \u00d6rebro University  \u00d6rebro Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4247-2236","authenticated-orcid":false,"given":"Liselotte","family":"Hermansson","sequence":"additional","affiliation":[{"name":"School of Health Sciences \u00d6rebro University  \u00d6rebro Sweden"},{"name":"Department of Prosthetics and Orthotics, Faculty of Medicine and Health \u00d6rebro University  \u00d6rebro Sweden"},{"name":"University Health Care Research Center, Faculty of Medicine and Health \u00d6rebro University  \u00d6rebro Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5567-9431","authenticated-orcid":false,"given":"Helen","family":"Lindner","sequence":"additional","affiliation":[{"name":"School of Health Sciences \u00d6rebro University  \u00d6rebro Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9188-7510","authenticated-orcid":false,"given":"Carin","family":"Fredriksson","sequence":"additional","affiliation":[{"name":"School of Health Sciences \u00d6rebro University  \u00d6rebro Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,8,18]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2014.02.003"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/01942638.2017.1337664"},{"issue":"2","key":"e_1_2_12_4_1","doi-asserted-by":"crossref","first-page":"217","DOI":"10.1037\/a0015651","article-title":"Experiences of parents of children with congenital limb differences with health care providers: A qualitative study","volume":"54","author":"Andrews E. E.","year":"2009","journal-title":"Rehabilitation Psychology"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.3109\/14767058.2016.1160048"},{"issue":"5","key":"e_1_2_12_6_1","doi-asserted-by":"crossref","first-page":"324","DOI":"10.1016\/0007-1226(94)90091-4","article-title":"Decision\u2010making by parents and children in paediatric hand surgery","volume":"47","author":"Bradbury E. T.","year":"1994","journal-title":"British Journal of Plastic Surgery"},{"key":"e_1_2_12_7_1","first-page":"1","article-title":"Parent engagement and disengagement in paediatric settings: An occupational therapy perspective","author":"D'Arrigo R.","year":"2019","journal-title":"Disability and Rehabilitation"},{"issue":"3","key":"e_1_2_12_8_1","doi-asserted-by":"crossref","first-page":"207","DOI":"10.3233\/PRM-150337","article-title":"Parents' experiences of splinting programs for babies with congenital limb anomalies","volume":"8","author":"Durlacher K. M.","year":"2015","journal-title":"Journal of Pediatric Rehabilitation Medicine"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1471-6712.2010.00823.x"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0003-9993(02)04932-8"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1302\/1863-2548.12.180107"},{"issue":"2","key":"e_1_2_12_12_1","doi-asserted-by":"crossref","first-page":"174","DOI":"10.1016\/S0894-1130(99)80021-0","article-title":"Treatment of congenital differences of the upper extremity: Therapist's commentary","volume":"12","author":"Fuller M.","year":"1999","journal-title":"Journal of Hand Therapy"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nedt.2003.10.001"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.3402\/qhw.v9.24152"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.wombi.2016.04.007"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/1074840718772808"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1302\/1863-2548.11.170026"},{"issue":"2","key":"e_1_2_12_18_1","doi-asserted-by":"crossref","first-page":"78","DOI":"10.1097\/BTH.0b013e3181d79f2e","article-title":"Hand therapy for children with congenital hand differences","volume":"14","author":"Lake A.","year":"2010","journal-title":"Techniques in Hand & Upper Extremity Surgery"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2008.04778.x"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2005.00568.x"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1080\/11038128.2017.1320584"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1080\/11038128.2017.1337807"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12487"},{"issue":"7","key":"e_1_2_12_24_1","doi-asserted-by":"crossref","first-page":"584","DOI":"10.2340\/16501977-0825","article-title":"Participation and health\u2010related quality of life of Dutch children and adolescents with congenital lower limb deficiencies","volume":"43","author":"Michielsen A.","year":"2011","journal-title":"Journal of Rehabilitation Medicine"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2011.11.024"},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0094-1298(20)31274-8"},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2018.1543462"},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2431-12-177"},{"key":"e_1_2_12_29_1","doi-asserted-by":"publisher","DOI":"10.1177\/026921559901300308"},{"key":"e_1_2_12_30_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.apmr.2016.01.031"},{"key":"e_1_2_12_31_1","doi-asserted-by":"publisher","DOI":"10.1080\/J006v18n01_01"},{"issue":"2","key":"e_1_2_12_32_1","doi-asserted-by":"crossref","first-page":"78","DOI":"10.3109\/03093649109164637","article-title":"The management of the limb deficient child and its family","volume":"15","author":"Setoguchi Y.","year":"1991","journal-title":"Prosthetics and Orthotics International"},{"key":"e_1_2_12_33_1","unstructured":"Socialstyrelsen. (2018).Birth defects 2016 [in Swedish: Fosterskador och kromosomavvikelser 2016].Retrieved fromwww.socialstyrelsen.se:"},{"key":"e_1_2_12_34_1","doi-asserted-by":"publisher","DOI":"10.3109\/11038128.2015.1105292"},{"issue":"1","key":"e_1_2_12_35_1","first-page":"103","article-title":"Screening for behavioral and emotional problems in children and adolescents with congenital or acquired limb deficiencies","volume":"146","author":"Varni J. W.","year":"1992","journal-title":"American Journal of Diseases of Children"},{"issue":"1","key":"e_1_2_12_36_1","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1097\/00004703-199302000-00003","article-title":"Effects of parental adjustment on the adaptation of children with congenital or acquired limb deficiencies","volume":"14","author":"Varni J. W.","year":"1993","journal-title":"Journal of Developmental and Behavioral Pediatrics"},{"key":"e_1_2_12_37_1","doi-asserted-by":"publisher","DOI":"10.2340\/16501977-1922"},{"key":"e_1_2_12_38_1","doi-asserted-by":"publisher","DOI":"10.1136\/adc.83.1.10"},{"issue":"3","key":"e_1_2_12_39_1","first-page":"26","article-title":"Children with disability and complex health needs: The impact on family life. (Art & Science)(Report)","volume":"26","author":"Whiting M.","year":"2014","journal-title":"Nursing Children and Young People"},{"key":"e_1_2_12_40_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1651-2227.2010.01855.x"}],"container-title":["Child: Care, Health and Development"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fcch.12802","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cch.12802","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/cch.12802","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cch.12802","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,4]],"date-time":"2023-09-04T22:50:04Z","timestamp":1693867804000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/cch.12802"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,8,18]]},"references-count":39,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2020,11]]}},"alternative-id":["10.1111\/cch.12802"],"URL":"https:\/\/doi.org\/10.1111\/cch.12802","archive":["Portico"],"relation":{},"ISSN":["0305-1862","1365-2214"],"issn-type":[{"value":"0305-1862","type":"print"},{"value":"1365-2214","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,8,18]]},"assertion":[{"value":"2020-02-25","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-08-07","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-08-18","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}