228 Investigating the Transitionary Process from Pediatric to Adult Care and Improving Transitional Readiness for Youth with Sickle Cell Disease (SCD) through Co-Designing an Intervention
OBJECTIVES/GOALS: The goal is to use a participatory design approach involving patients and healthcare providers to create an intervention aiming to improve the transition readiness of youth with sickle cell disease (SCD) when going from pediatric to adult care in Ontario. METHODS/STUDY POPULATION:...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Cambridge University Press
2024-04-01
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| Series: | Journal of Clinical and Translational Science |
| Online Access: | https://www.cambridge.org/core/product/identifier/S2059866124002115/type/journal_article |
| _version_ | 1797226820800610304 |
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| author | Janine Noorloos Fairuz Karim Jaspreet Randhawa Geil Astorga Peola Ellis |
| author_facet | Janine Noorloos Fairuz Karim Jaspreet Randhawa Geil Astorga Peola Ellis |
| author_sort | Janine Noorloos |
| collection | DOAJ |
| description | OBJECTIVES/GOALS: The goal is to use a participatory design approach involving patients and healthcare providers to create an intervention aiming to improve the transition readiness of youth with sickle cell disease (SCD) when going from pediatric to adult care in Ontario. METHODS/STUDY POPULATION: The study employed a participatory design approach, utilizing co-design and community-consulted design practices. The co-design process involved three design sessions with 7 adult participants (3 with SCD, 3 with SCD working in healthcare, and 1 without SCD but working in healthcare) to actively involve them in designing an intervention that addressed their unmet needs. A thematic analysis of the first design session was conducted to gain insight into their experiences. The community-consulted design included three internal research team sessions to synthesize the participants' insights. Zoom was used for all sessions, and Miro as the online collaboration tool for participatory design activities, resulting in a prototype that reflected the collective input of the target users and the broader community. RESULTS/ANTICIPATED RESULTS: With the thematic analysis, one prominent theme emerged, labeled as 'Barriers to Successful Transition,' which consisted of four subthemes: 1) Lack of Education and Awareness; 2) Constraints in Healthcare Delivery, 3) Managing Multiple Transitions; and 4) Racial Bias in Healthcare. The word 'hospital' emerged as the most frequently mentioned word, following closely were the terms 'school,' 'person,' 'sickle cell disease,' and 'education.' This analysis underscores the crucial involvement of hospitals and healthcare providers in facilitating the transition of youth with SCD. Following the design sessions, the most desirable/feasible intervention was to create an accredited digital educational module for adult healthcare providers specifically focusing on youth transitioning with SCD. DISCUSSION/SIGNIFICANCE: 3,500 people in Ontario have SCD, with an average age of 24 years, where one-third are aged 14 or younger. Youth with SCD face unique challenges, so effective communication and comprehensive care coordination are needed from healthcare providers. The digital module will increase awareness and ultimately improve transition readiness. |
| first_indexed | 2024-04-24T14:30:59Z |
| format | Article |
| id | doaj.art-44196e20b8f9400fa99d39ae6b98fae2 |
| institution | Directory Open Access Journal |
| issn | 2059-8661 |
| language | English |
| last_indexed | 2024-04-24T14:30:59Z |
| publishDate | 2024-04-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj.art-44196e20b8f9400fa99d39ae6b98fae22024-04-03T02:00:34ZengCambridge University PressJournal of Clinical and Translational Science2059-86612024-04-018686910.1017/cts.2024.211228 Investigating the Transitionary Process from Pediatric to Adult Care and Improving Transitional Readiness for Youth with Sickle Cell Disease (SCD) through Co-Designing an InterventionJanine Noorloos0Fairuz Karim1Jaspreet Randhawa2Geil Astorga3Peola Ellis4University of TorontoUniversity of TorontoUniversity of TorontoUniversity of TorontoUniversity of TorontoOBJECTIVES/GOALS: The goal is to use a participatory design approach involving patients and healthcare providers to create an intervention aiming to improve the transition readiness of youth with sickle cell disease (SCD) when going from pediatric to adult care in Ontario. METHODS/STUDY POPULATION: The study employed a participatory design approach, utilizing co-design and community-consulted design practices. The co-design process involved three design sessions with 7 adult participants (3 with SCD, 3 with SCD working in healthcare, and 1 without SCD but working in healthcare) to actively involve them in designing an intervention that addressed their unmet needs. A thematic analysis of the first design session was conducted to gain insight into their experiences. The community-consulted design included three internal research team sessions to synthesize the participants' insights. Zoom was used for all sessions, and Miro as the online collaboration tool for participatory design activities, resulting in a prototype that reflected the collective input of the target users and the broader community. RESULTS/ANTICIPATED RESULTS: With the thematic analysis, one prominent theme emerged, labeled as 'Barriers to Successful Transition,' which consisted of four subthemes: 1) Lack of Education and Awareness; 2) Constraints in Healthcare Delivery, 3) Managing Multiple Transitions; and 4) Racial Bias in Healthcare. The word 'hospital' emerged as the most frequently mentioned word, following closely were the terms 'school,' 'person,' 'sickle cell disease,' and 'education.' This analysis underscores the crucial involvement of hospitals and healthcare providers in facilitating the transition of youth with SCD. Following the design sessions, the most desirable/feasible intervention was to create an accredited digital educational module for adult healthcare providers specifically focusing on youth transitioning with SCD. DISCUSSION/SIGNIFICANCE: 3,500 people in Ontario have SCD, with an average age of 24 years, where one-third are aged 14 or younger. Youth with SCD face unique challenges, so effective communication and comprehensive care coordination are needed from healthcare providers. The digital module will increase awareness and ultimately improve transition readiness.https://www.cambridge.org/core/product/identifier/S2059866124002115/type/journal_article |
| spellingShingle | Janine Noorloos Fairuz Karim Jaspreet Randhawa Geil Astorga Peola Ellis 228 Investigating the Transitionary Process from Pediatric to Adult Care and Improving Transitional Readiness for Youth with Sickle Cell Disease (SCD) through Co-Designing an Intervention Journal of Clinical and Translational Science |
| title | 228 Investigating the Transitionary Process from Pediatric to Adult Care and Improving Transitional Readiness for Youth with Sickle Cell Disease (SCD) through Co-Designing an Intervention |
| title_full | 228 Investigating the Transitionary Process from Pediatric to Adult Care and Improving Transitional Readiness for Youth with Sickle Cell Disease (SCD) through Co-Designing an Intervention |
| title_fullStr | 228 Investigating the Transitionary Process from Pediatric to Adult Care and Improving Transitional Readiness for Youth with Sickle Cell Disease (SCD) through Co-Designing an Intervention |
| title_full_unstemmed | 228 Investigating the Transitionary Process from Pediatric to Adult Care and Improving Transitional Readiness for Youth with Sickle Cell Disease (SCD) through Co-Designing an Intervention |
| title_short | 228 Investigating the Transitionary Process from Pediatric to Adult Care and Improving Transitional Readiness for Youth with Sickle Cell Disease (SCD) through Co-Designing an Intervention |
| title_sort | 228 investigating the transitionary process from pediatric to adult care and improving transitional readiness for youth with sickle cell disease scd through co designing an intervention |
| url | https://www.cambridge.org/core/product/identifier/S2059866124002115/type/journal_article |
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