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http://hdl.handle.net/11375/29443
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DC Field | Value | Language |
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dc.contributor.advisor | Batthish, Michelle | - |
dc.contributor.advisor | Gorter, Jan-Willem | - |
dc.contributor.author | Heera, Simran | - |
dc.date.accessioned | 2024-01-24T16:44:18Z | - |
dc.date.available | 2024-01-24T16:44:18Z | - |
dc.date.issued | 2024-05 | - |
dc.identifier.uri | http://hdl.handle.net/11375/29443 | - |
dc.description.abstract | Aging adolescents with rheumatic disease adopt responsibility for disease management from parents. Education on transition care is usually provided to patients by healthcare providers or parents. However, parent-focused transition resources are sparse with limited understanding of parental role and involvement during transition. After providing both parent and adolescent with the Transition Toolkit (parent-centered transition pamphlet, 5 domains of transition readiness roadmap, tip sheets) to support transition to adult care, we aimed to i) determine the change in patient’s transition readiness, using the Transition-Q, ii) explore the influence of parent-adolescent relationships on transition readiness, using the Parent-Adolescent Communication Scale (PACS), and iii) obtain feedback on the Toolkit’s effectiveness, using a questionnaire. A prospective cohort study of patients 14-18 years was conducted at McMaster Children’s Hospital rheumatology transition clinic (includes pediatric rheumatologists, allied health, and the adult rheumatologist patients see post-transfer). Participant demographics, disease characteristics, transition readiness scores (Transition-Q, max 100), and parent-adolescent communication scores (PACS, max 100) were collected. After obtaining 2 Transition-Q scores from routine clinical care prior to enrollment, the Toolkit was shared with participants, and 2 follow-up Transition-Q scores were collected. Generalized estimating equation analyses were performed to determine the Toolkit’s impact on transition readiness and explore the parent-adolescent relationship and communication quality. Subgroup analyses were conducted by sex. A questionnaire was used to obtain Toolkit feedback. Of 21 patients, 19 completed one post-intervention Transition-Q and 16 completed two. Transition-Q scores increased over time and the rate of increase doubled after the Toolkit was shared with adolescents and parents (β=7.8, P<0.0 and β=15.5, P<0.0, respectively). Transition readiness did not seem to be influenced by the quality of communication between parent and child. Feedback from questionnaire responses found the Toolkit to be a helpful resource but standardization of transition programs and further investigation into parent-adolescent relationships, gender differences, and intervention sustainability is needed. | en_US |
dc.language.iso | en | en_US |
dc.subject | Transition | en_US |
dc.subject | Pediatric Rheumatology | en_US |
dc.subject | JIA | en_US |
dc.subject | Lupus/cSLE | en_US |
dc.subject | Content Analysis | en_US |
dc.subject | GEE Analysis | en_US |
dc.subject | Qualitative | en_US |
dc.subject | Quantitative | en_US |
dc.subject | Statistical | en_US |
dc.subject | Transfer to Adult Care | en_US |
dc.subject | Parent-Adolescent Communication | en_US |
dc.subject | Transition Readiness | en_US |
dc.title | The Trust Study – Transition Us Together: Evaluating the Impact of A Parent- And Adolescent-Centered Transition Toolkit On Transition Readiness In Patients With Juvenile Idiopathic Arthritis And Childhood-Onset Systemic Lupus Erythematosus | en_US |
dc.type | Thesis | en_US |
dc.contributor.department | Rehabilitation Science | en_US |
dc.description.degreetype | Thesis | en_US |
dc.description.degree | Master of Science Rehabilitation Science (MSc) | en_US |
dc.description.layabstract | Aging youths with rheumatic disease adopt the responsibility of disease management from parents. However, few resources to educate parents on transition and transition support exist. After giving patients and parents a Transition Toolkit, we aimed to i) determine change in patient’s transition readiness, ii) explore the influence of parent-adolescent relationships on transition readiness, and iii) obtain feedback on Toolkit use. Twenty-one study participants were recruited. Participant demographics, transition readiness scores, and parent-adolescent communication scores were collected. Transition-Q scores were collected before and after Toolkit provision. Analyses were performed to determine Toolkit impact and influence of parent-adolescent communication on transition readiness. Toolkit feedback from parents and adolescents were obtained through a questionnaire. Transition-Q scores increased at each follow-up, with the greatest increase after the Toolkit was shared. Parent-adolescent relationships did not influence transition readiness. Toolkit feedback suggests digital reminders to improve long-term retention of transition education. Future studies with greater patient diversity are recommended. | en_US |
Appears in Collections: | Open Access Dissertations and Theses |
Files in This Item:
File | Description | Size | Format | |
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Heera_Simran_December2024_Masters.pdf | 4.79 MB | Adobe PDF | View/Open |
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