{"id":{"repo_id":"uoit","oai_identifier":"oai:ontariotechu.scholaris.ca:10155/924"},"canonical_url":"https://search.dev.ndltd.org/etd/uoit/oai:ontariotechu.scholaris.ca:10155/924","repository":{"repo_id":"uoit","name":"Ontario Institute of Technology","base_url":"https://ontariotechu.scholaris.ca/server/oai/request"},"display":{"title":"A whole new world: the experiences of adolescents with beta-thalassemia major as they transition to adult care","abstract":"Beta-thalassemia Major (b-TM) is a chronic medical condition. Effective illness management requires adherence to arduous medical treatment to ensure a life free of life-threatening complications. This qualitative study characterizes the experiences of adolescents living with, and managing b-TM on the cusp of transitioning from pediatric to adult orientated institutions of care. Using the methodological approach of interpretive phenomenology and conducting semi-structured interviews with five participants, five themes were identified. These include: knowledge and understanding of b-TM; role of familial support; self-reflection and disclosure; comradery; and readiness to transition, including the impact of incorporating a Health Transition Specialist as a member of a comprehensive health care team. The findings identify key factors that impact the daily lives of adolescents with b-TM, as they adapt to required self-management practices, navigate the health care system, and transition to adult care.","abstract_html":"Beta-thalassemia Major (b-TM) is a chronic medical condition. Effective illness management requires adherence to arduous medical treatment to ensure a life free of life-threatening complications. This qualitative study characterizes the experiences of adolescents living with, and managing b-TM on the cusp of transitioning from pediatric to adult orientated institutions of care. Using the methodological approach of interpretive phenomenology and conducting semi-structured interviews with five participants, five themes were identified. These include: knowledge and understanding of b-TM; role of familial support; self-reflection and disclosure; comradery; and readiness to transition, including the impact of incorporating a Health Transition Specialist as a member of a comprehensive health care team. The findings identify key factors that impact the daily lives of adolescents with b-TM, as they adapt to required self-management practices, navigate the health care system, and transition to adult care.","abstract_has_math":false,"creators":["Vizza, Julie"],"institution":"University of Ontario Institute of Technology","degree_name":"Master of Health Sciences (MHSc)","degree_level":null,"degree_discipline":"Community Health","degree_department":null,"school":null,"contributors":[],"advisors":["Barakat, Caroline","Weaver, Robert"],"committee_chairs":[],"committee_members":[],"year":2018,"date_issued":"2018-04-01","date_published":"2018-04-01","updated_at":"2026-07-24T05:35:18Z","subjects":["Adolescent","Chronic illness","Beta-thalassemia major","Transition","Autonomy"],"languages":["en"],"rights":[],"rights_urls":[],"identifier_entries":[]},"links":{"outbound_url":"https://hdl.handle.net/10155/924","outbound_label":"Handle","outbound_source":"dc:identifier.uri"},"metadata_groups":[{"id":"people","label":"People","entries":[{"key":"dc:contributor.advisor","label":"Advisor","values":["Barakat, Caroline","Weaver, Robert"]},{"key":"dc:creator","label":"Author","values":["Vizza, Julie"]}]},{"id":"academic_context","label":"Academic Context","entries":[{"key":"dc:date.accessioned","label":"Dc Date Accessioned","values":["2018-07-16T13:51:26Z","2022-03-29T16:56:57Z"]},{"key":"dc:date.available","label":"Dc Date Available","values":["2018-07-16T13:51:26Z","2022-03-29T16:56:57Z"]},{"key":"dc:date.issued","label":"Date","values":["2018-04-01"]},{"key":"dc:type","label":"Dc Type","values":["Thesis"]},{"key":"thesis:degree_discipline","label":"Discipline","values":["Community Health"]},{"key":"thesis:degree_name","label":"Degree Name","values":["Master of Health Sciences (MHSc)"]},{"key":"thesis:institution_name","label":"Thesis Institution Name","values":["University of Ontario Institute of Technology"]}]},{"id":"subjects_keywords","label":"Subjects and Keywords","entries":[{"key":"dc:subject","label":"Dc Subject","values":["Adolescent","Chronic illness","Beta-thalassemia major","Transition","Autonomy"]}]},{"id":"language_rights","label":"Language and Rights","entries":[{"key":"dc:language.iso","label":"Language (ISO)","values":["en"]}]},{"id":"identifiers","label":"Identifiers","entries":[{"key":"dc:identifier.uri","label":"Identifier URI","values":["https://hdl.handle.net/10155/924"]}]},{"id":"additional","label":"Additional Metadata","entries":[{"key":"dc:description.abstract","label":"Abstract","values":["Beta-thalassemia Major (b-TM) is a chronic medical condition. Effective illness management requires adherence to arduous medical treatment to ensure a life free of life-threatening complications. This qualitative study characterizes the experiences of adolescents living with, and managing b-TM on the cusp of transitioning from pediatric to adult orientated institutions of care. Using the methodological approach of interpretive phenomenology and conducting semi-structured interviews with five participants, five themes were identified. These include: knowledge and understanding of b-TM; role of familial support; self-reflection and disclosure; comradery; and readiness to transition, including the impact of incorporating a Health Transition Specialist as a member of a comprehensive health care team. The findings identify key factors that impact the daily lives of adolescents with b-TM, as they adapt to required self-management practices, navigate the health care system, and transition to adult care."]},{"key":"dc:title","label":"Title","values":["A whole new world: the experiences of adolescents with beta-thalassemia major as they transition to adult care"]}]}],"canonical_facts":{"dc:contributor.advisor":["Barakat, Caroline","Weaver, Robert"],"dc:creator":["Vizza, Julie"],"dc:date.accessioned":["2018-07-16T13:51:26Z","2022-03-29T16:56:57Z"],"dc:date.available":["2018-07-16T13:51:26Z","2022-03-29T16:56:57Z"],"dc:date.issued":["2018-04-01"],"dc:description.abstract":["Beta-thalassemia Major (b-TM) is a chronic medical condition. Effective illness management requires adherence to arduous medical treatment to ensure a life free of life-threatening complications. This qualitative study characterizes the experiences of adolescents living with, and managing b-TM on the cusp of transitioning from pediatric to adult orientated institutions of care. Using the methodological approach of interpretive phenomenology and conducting semi-structured interviews with five participants, five themes were identified. These include: knowledge and understanding of b-TM; role of familial support; self-reflection and disclosure; comradery; and readiness to transition, including the impact of incorporating a Health Transition Specialist as a member of a comprehensive health care team. The findings identify key factors that impact the daily lives of adolescents with b-TM, as they adapt to required self-management practices, navigate the health care system, and transition to adult care."],"dc:identifier.uri":["https://hdl.handle.net/10155/924"],"dc:language.iso":["en"],"dc:subject":["Adolescent","Chronic illness","Beta-thalassemia major","Transition","Autonomy"],"dc:title":["A whole new world: the experiences of adolescents with beta-thalassemia major as they transition to adult care"],"dc:type":["Thesis"],"thesis:degree_discipline":["Community Health"],"thesis:degree_name":["Master of Health Sciences (MHSc)"],"thesis:institution_name":["University of Ontario Institute of Technology"]},"updated_at":"2026-07-24T05:35:18Z"}