The Life Experiences of 16-25-Year-Old Patients With Type 1 Diabetes

Background: Type1 diabetes(T1D) occurs mostly in children and adolescents. The control of disease has been getting worse during the transition phase of adolescents to young adults. It is one of the most pressure during the late adolescent to young adulthood because they face the variety of career development. It will impact the result of disease control by the stress and personal capability to face the challenge. We are lacking the concerning research in domestic study in Taiwan. Purpose: To explore the transitional life experiences of patients with type 1 diabetes in age 16-25 years old in Taiwan. Methods: A descriptive phenomenological design was used. Fourteen adolescents withT1D were individually interviewed using a semi-structured interview. Interviews were transcribed and non-verbal communication recorded within 24 hours of the interview. Transcriptions were analyzed and perceptions and attitudes grouped according to theme expressed. Results: The results showed that the life experiences of patients with type 1 diabetes at the age of 16-25 undergo a transition process from hibernation to seeking an exit, including 6 themes: (1) hibernation: the patients perceived that they were not young anymore and waited for the chance at self-management. This phenomenon is similar to a pupa hibernating in a cocoon and waiting to come out; (2) breaking the cocoon: the patients actively participated in disease-related decision-making or self-care and attempted to get rid of their parents’ protection. It is similar to a pupa slowly breaking from the cocoon and leaving the shelter; (3) encountering difficulties: the frustrations and obstacles faced by the patients during the learning of self-management are similar to various obstacles encountered by a butterfly as it begins to flap its wings and fly; (4) worries: due to the increase in involvement, the patients’ worries about their disease increased; (5) hesitation: the patients perceived that bearing responsibilities is not as simple as they had imagined. Therefore, they hesitated between independence and dependence, reality and ideal, and internality and externality; (6) seeking an exit: the patients tried various approaches to respond to the impacts so as to enable themselves to co-exist with the disease. During the transition phase, the patients experienced the trials of various situations. Regardless of whether they are able to independently bear the responsibilities of self-management at the current stage, they all hope to become the Chief Executive Officer(CEO) of their own disease. Conclusions: Due to the differences in culture and parenting style, in Taiwan, patients with type 1 diabetes still cannot fully bear the responsibilities of disease self-management even at early adulthood. Moreover, attention should be paid to the situation where the patients used negative strategies to face stress. The results of this study may be used as clinical care guidelines for patients with type 1 diabetes in age 16-25 years old and provide a reference for developing transitional intervention strategies that meet cultural needs.