{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T22:26:37Z","timestamp":1787955997587,"version":"build-2784847793"},"reference-count":34,"publisher":"Wiley","issue":"15-16","license":[{"start":{"date-parts":[[2020,5,22]],"date-time":"2020-05-22T00:00:00Z","timestamp":1590105600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Clinical Nursing"],"published-print":{"date-parts":[[2020,8]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Aims and objectives<\/jats:title>\n                    <jats:p>To explore the day\u2010to\u2010day experiences of family caregivers who are caring for children with Osteogenesis Imperfecta (OI).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Osteogenesis Imperfecta is a rare genetic condition known to cause bone fragility. Family caregivers of children with OI play an important role in helping these children live well at home.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>A qualitative descriptive design was used.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      A qualitative descriptive study was conducted in accordance with the COREQ guidelines. Adult family caregivers (\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a018) of children with OI were recruited from a university\u2010affiliated, paediatric orthopaedic hospital in Montreal, Canada. Individual interviews were conducted, transcribed verbatim and inductively thematically analysed.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Osteogenesis Imperfecta family caregiving entailed: (a) managing regular day\u2010to\u2010day caregiving activities, including morning routines, evening routines and the facilitation of their child's mobilisation; (b) coping with periods that made the caregiving routine more challenging, such as fractures, surgeries and pain; and (c) devising long\u2010term strategies to support day\u2010to\u2010day care, such as managing the environment, accessing medical and school resources, and coordinating care and respite.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The day\u2010to\u2010day routine of caring for a child with OI may be disrupted by challenging periods and improved by long\u2010term strategies developed to ease day\u2010to\u2010day care. These strategies suggest future directions for clinicians and policymakers to improve health services and caregiver well\u2010being.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Relevance to clinical practice<\/jats:title>\n                    <jats:p>Clinical, policy and research endeavours need to incorporate new interventions to support the needs of family caregivers. These recommendations may be relevant to other clinicians and policymakers working with families living with rare and chronic physical conditions.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jocn.15310","type":"journal-article","created":{"date-parts":[[2020,4,30]],"date-time":"2020-04-30T07:29:00Z","timestamp":1588231740000},"page":"2999-3011","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":22,"title":["The day\u2010to\u2010day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive study"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6461-0866","authenticated-orcid":false,"given":"Aimee R.","family":"Castro","sequence":"first","affiliation":[{"name":"Ingram School of Nursing McGill University Montr\u00e9al Canada"},{"name":"Shriners Hospitals for Children\u2010Canada Montr\u00e9al Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Marinello","sequence":"additional","affiliation":[{"name":"Ingram School of Nursing McGill University Montr\u00e9al Canada"},{"name":"Shriners Hospitals for Children\u2010Canada Montr\u00e9al Canada"},{"name":"Montreal Children's Hospital Montr\u00e9al Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Khadidja","family":"Chougui","sequence":"additional","affiliation":[{"name":"Shriners Hospitals for Children\u2010Canada Montr\u00e9al Canada"},{"name":"University of Montreal Montr\u00e9al Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marilyn","family":"Morand","sequence":"additional","affiliation":[{"name":"Shriners Hospitals for Children\u2010Canada Montr\u00e9al Canada"},{"name":"University of Montreal Montr\u00e9al Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudette","family":"Bilodeau","sequence":"additional","affiliation":[{"name":"Shriners Hospitals for Children\u2010Canada Montr\u00e9al Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5963-9728","authenticated-orcid":false,"given":"Argerie","family":"Tsimicalis","sequence":"additional","affiliation":[{"name":"Ingram School of Nursing McGill University Montr\u00e9al Canada"},{"name":"Shriners Hospitals for Children\u2010Canada Montr\u00e9al Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,5,22]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.3109\/01942638.2012.754395"},{"issue":"7","key":"e_1_2_12_3_1","first-page":"764","article-title":"Difficulties experienced by caregivers of patients diagnosed with osteogenesis imperfecta (OI): Example of a hospital","volume":"65","author":"Arabaci L. B.","year":"2015","journal-title":"The Journal of the Pakistan Medical Association"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2214.2002.00282.x"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.3109\/17483107.2014.907367"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.4274\/jcrpe.1304"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2019.1595750"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.2196\/15924"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.61497"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216316634245"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.6722"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2431-13-153"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2014.03.002"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-12-54"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijotn.2018.11.005"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.1697"},{"key":"e_1_2_12_18_1","volume-title":"EXCLUSIVE: Saskatchewan boy creates splint kit for fellow patients at Shriners Hospital for Children","author":"Leclair A.","year":"2018"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/0147-1767(85)90062-8"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12446"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1038\/nrdp.2017.52"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1177\/1367493511420186"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2015.03.009"},{"key":"e_1_2_12_24_1","volume-title":"Nursing research: Generating and assessing evidence for nursing practice","author":"Polit D.","year":"2012"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.NAJ.0000527485.94115.7e"},{"issue":"5","key":"e_1_2_12_26_1","first-page":"973","article-title":"Building on self\u2010efficacy for experienced family caregivers: The Savvy Advanced Program","volume":"59","author":"Samia L. W.","year":"2018","journal-title":"The Gerontologist"},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.1002\/nur.4770180211"},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.1002\/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G"},{"key":"e_1_2_12_29_1","article-title":"Family experience with osteogenesis imperfecta type 1: The most distressing situations","volume":"1","author":"Santos M. C. D.","year":"2017","journal-title":"Disability and Rehabilitation"},{"issue":"1","key":"e_1_2_12_30_1","first-page":"99","article-title":"Assessment of quality of life of parents of children with osteogenesis","volume":"21","author":"Szczepaniak\u2010Kubat A.","year":"2012","journal-title":"Adv Clin Exp Med"},{"key":"e_1_2_12_31_1","doi-asserted-by":"publisher","DOI":"10.1111\/nuf.12389"},{"key":"e_1_2_12_32_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_12_33_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00198-016-3723-3"},{"key":"e_1_2_12_34_1","unstructured":"Upopolis Launches at Shriners. (2017). Retrieved fromhttps:\/\/www.kidshealthlinks.org\/blog\/2017\/12\/20\/eq6nm37otnyd742ymmyf35fv0xpa51."},{"key":"e_1_2_12_35_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-015-0226-4"}],"container-title":["Journal of Clinical Nursing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fjocn.15310","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jocn.15310","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/jocn.15310","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jocn.15310","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,24]],"date-time":"2023-08-24T04:52:25Z","timestamp":1692852745000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jocn.15310"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,5,22]]},"references-count":34,"journal-issue":{"issue":"15-16","published-print":{"date-parts":[[2020,8]]}},"alternative-id":["10.1111\/jocn.15310"],"URL":"https:\/\/doi.org\/10.1111\/jocn.15310","archive":["Portico"],"relation":{"has-preprint":[{"id-type":"doi","id":"10.1101\/19007187","asserted-by":"object"}]},"ISSN":["0962-1067","1365-2702"],"issn-type":[{"value":"0962-1067","type":"print"},{"value":"1365-2702","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,5,22]]},"assertion":[{"value":"2019-10-25","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-04-05","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-05-22","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}