A whole new world: the experiences of adolescents with beta-thalassemia major as they transition to adult care

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.

Name thesis:degree_name

Master of Health Sciences (MHSc)

Discipline thesis:degree_discipline

Community Health

Grantor

University of Ontario Institute of Technology

Year dc:date.issued

2018

Author dc:creator

• Vizza, Julie

Advisors dc:contributor.advisor

• Barakat, Caroline
• Weaver, Robert

• Adolescent
• Chronic illness
• Beta-thalassemia major
• Transition
• Autonomy

Language dc:language.iso

en

Handle dc:identifier.uri

https://hdl.handle.net/10155/924

OAI identifier oai:identifier

oai:ontariotechu.scholaris.ca:10155/924