{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T15:00:58Z","timestamp":1787238058455,"version":"build-2736575974"},"reference-count":56,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2024,3,6]],"date-time":"2024-03-06T00:00:00Z","timestamp":1709683200000},"content-version":"vor","delay-in-days":5,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000024","name":"Canadian Institutes of Health Research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Child"],"published-print":{"date-parts":[[2024,3]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>During the transition to adulthood, a common challenge that youth with a neurodisability may experience is learning how to navigate services in the adult care system. During this transition youth may rely on their families, including siblings, for support. However, delineation of sibling roles and responsibilities during this transition period are unclear. This study aims to identify the roles and responsibilities that siblings perceive to have with their sibling with a neurodisability during the transition to adulthood, and describe the decision\u2010making process of how siblings chose these roles.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>In this descriptive qualitative case study, siblings were eligible to participate if they were between 14 to 40\u2009years old, had a sibling between 14 to 21\u2009years with a childhood\u2010onset neurodisability and spoke English. Semi\u2010structured interviews augmented by techniques of photo elicitation and relational maps were conducted. Reflexive thematic analysis was applied to identify sibling roles, as well as the emotional and decision\u2010making process associated with these roles. Our team partnered with siblings with lived experience in all study phases.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Nineteen participants (median age\u2009=\u200919\u2009years, range\u2009=\u200914 to 33\u2009years) from 16 unique families were interviewed. Six unique roles were described: friend, role model\/mentor, protector, advocate, supporter, or caregiver. The emotions that siblings experienced with each role, also known as emotional responsibility, were categorized into levels of low, medium or high. Siblings also described a four\u2010phase decision\u2010making process for their roles: (1) acquiring knowledge; (2) preparing plans; (3) making adjustments; and (4) seeking support. Intrapersonal characteristics, including personal identity, values and experiences, influenced roles assumed by siblings.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Siblings identified needing support as they process their decisions and emotional responsibility in their roles when their sibling with a neurodisability is transitioning to adulthood. Resources should be developed or further enhanced to support siblings.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/cch.13241","type":"journal-article","created":{"date-parts":[[2024,3,6]],"date-time":"2024-03-06T06:39:38Z","timestamp":1709707178000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":13,"title":["Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood"],"prefix":"10.1111","volume":"50","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7165-6678","authenticated-orcid":false,"given":"Linda","family":"Nguyen","sequence":"first","affiliation":[{"name":"School of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences McGill University  Montreal Quebec Canada"},{"name":"School of Rehabilitation Science, Faculty of Health Sciences McMaster University  Hamilton Ontario Canada"},{"name":"CanChild Centre for Childhood Disability Research McMaster University  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4380-620X","authenticated-orcid":false,"given":"Susan M.","family":"Jack","sequence":"additional","affiliation":[{"name":"School of Nursing, Faculty of Health Sciences McMaster University  Hamilton Ontario Canada"},{"name":"Department of Health Research Methods, Evidence, and Impact, Faculty of Health Sciences McMaster University  Hamilton Ontario Canada"},{"name":"Offord Centre for Child Studies  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3274-8796","authenticated-orcid":false,"given":"Hanae","family":"Davis","sequence":"additional","affiliation":[{"name":"Sibling Youth Advisory Council  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Samantha","family":"Bellefeuille","sequence":"additional","affiliation":[{"name":"Sibling Youth Advisory Council  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dana","family":"Arafeh","sequence":"additional","affiliation":[{"name":"Sibling Youth Advisory Council  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6061-2506","authenticated-orcid":false,"given":"Briano","family":"Di Rezze","sequence":"additional","affiliation":[{"name":"School of Rehabilitation Science, Faculty of Health Sciences McMaster University  Hamilton Ontario Canada"},{"name":"CanChild Centre for Childhood Disability Research McMaster University  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8324-518X","authenticated-orcid":false,"given":"Marjolijn","family":"Ketelaar","sequence":"additional","affiliation":[{"name":"CanChild Centre for Childhood Disability Research McMaster University  Hamilton Ontario Canada"},{"name":"Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center University Medical Center Utrecht and De Hoogstraat Rehabilitation  Utrecht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3012-2119","authenticated-orcid":false,"given":"Jan Willem","family":"Gorter","sequence":"additional","affiliation":[{"name":"School of Rehabilitation Science, Faculty of Health Sciences McMaster University  Hamilton Ontario Canada"},{"name":"CanChild Centre for Childhood Disability Research McMaster University  Hamilton Ontario Canada"},{"name":"Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center University Medical Center Utrecht and De Hoogstraat Rehabilitation  Utrecht The Netherlands"},{"name":"Department of Pediatrics McMaster University and McMaster Children's Hospital  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,3,6]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1352\/1934-9556-50.5.373"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1177\/1468017313476453"},{"issue":"2","key":"e_1_2_13_4_1","first-page":"544","article-title":"Qualitative case study methodology: Study design and implementation for novice researchers","volume":"13","author":"Baxter P.","year":"2008","journal-title":"The Qualitative Report"},{"key":"e_1_2_13_5_1","unstructured":"BellefeuilleS DavisH HavensJ. 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