The lived experiences of young people (13-16 years) with Type 1 diabetes and their parents - a qualitative phenomenological study

Probyn, JE; Cooper, H; Milton, B

Abstract

Aims
Within a programme of research aiming to develop a technology-based educational intervention for young people
with Type 1 diabetes, this study aimed to explore adolescents’ and parents’ experiences of living with Type 1 diabetes from an interpretive phenomenological perspective.

Methods
In-depth interviews were conducted with 20 adolescents with Type 1 diabetes from a diabetes clinic in North West England, and 27 of their parents.

Results
Living with Type 1 diabetes in adolescence was characterized by three distinct stages: (1) adapting to the
diagnosis; (2) learning to live with Type 1 diabetes; (3) becoming independent. Experiential learning was key to
adolescents developing self-management skills and independence. Parents and health professionals were instrumental in facilitating environments that gave adolescents the freedom to learn through trial and error. They also provided the support, feedback and discussion necessary to facilitate such learning.

Conclusions
For adolescents to become independent in Type 1 diabetes self-management, they must develop capability through experiential learning. It is important that parents and health professionals understand the important role they
play in this process and have the skills to support adolescents in this way. Data from this study have been used to develop an online interactive ‘Adolescent Diabetes Needs Assessment Tool’, which assesses individual learning and support needs to aid the process of feedback and discussion.

Citation

Probyn, J., Cooper, H., & Milton, B. (in press). The lived experiences of young people (13-16 years) with Type 1 diabetes and their parents - a qualitative phenomenological study. Diabetic Medicine, 30(1), e17-e24. https://doi.org/10.1111/dme.12021

• Journal Article Type: Article
• Acceptance Date: Sep 1, 2012
• Deposit Date: Nov 28, 2016
• Journal: Diabetic Medicine
• Print ISSN: 0742-3071
• Electronic ISSN: 1464-5491
• Publisher: Wiley
• Volume: 30
• Issue: 1
• Pages: e17-e24
• DOI: https://doi.org/10.1111/dme.12021
• Publisher URL: http://dx.doi.org/10.1111/dme.12021
• Additional Information: Projects : Type 1 diabetes and adolescence: An exploration of lived experiences.