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http://hdl.handle.net/11375/29443
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 |
Authors: | Heera, Simran |
Advisor: | Batthish, Michelle Gorter, Jan-Willem |
Department: | Rehabilitation Science |
Keywords: | Transition;Pediatric Rheumatology;JIA;Lupus/cSLE;Content Analysis;GEE Analysis;Qualitative;Quantitative;Statistical;Transfer to Adult Care;Parent-Adolescent Communication;Transition Readiness |
Publication Date: | May-2024 |
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. |
URI: | http://hdl.handle.net/11375/29443 |
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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