Facilitators and Inhibitors of Independent Self-Management of Adolescents with Type 1 Diabetes

Abstract

Purpose: The purpose of this qualitative descriptive study was to identify the facilitators and inhibitors of independent self-management of T1DM by adolescents, to elicit their perceptions of behaviors required for independent self-management and, to identify resources used by this population to support independent self-management. Background: Type 1 diabetes (T1DM) is one of the leading chronic diseases in childhood. In 2009 an estimated 166,984 U.S. children < 20 years old had a diagnosis of T1DM. Based on a 21% increase in the rate of T1DM between 2001-2009, it is projected that 600,000 children and adolescents will have T1DM by 2050. Adolescents with T1DM will eventually join the 1.25 million adults independently managing their T1DM. A smooth transition from dependent to independent self-management is imperative to prevent harmful long-term outcomes of the disease. Methods: Eleven adolescents- Five males and six females, carrying a T1DM diagnoses for at least one year participated in focus group interviews for this qualitative description study. The focus group interviews were transcribed verbatim and analyzed using qualitative content analysis. Results: Three domains emerged from an overarching theme, “Sorry, I have diabetes...It shaped me into who I am”: Self-management behavior skills required for the adolescent with T1DM during transition from dependent to independent T1DM self-management; Facilitators of everyday participation in self-management behaviors for adolescents with T1DM; and Inhibitors of everyday participation in self-management behaviors for adolescents with T1DM. The behaviors of independent self-management of adolescents with T1DM included preparation & knowledge, responsibility, and self-advocacy. Facilitators of everyday participation in self-management behaviors for adolescents with T1DM included Community influences, and Navigating the healthcare system. Community influences included the Family, Peers and Extra-community of the adolescent with T1DM. Three subcategories fell under Navigating the healthcare system included “Not making a big deal about it” “Technology allows more freedom” and the Interpersonal relationships with healthcare providers. Three categories reflected the third domain, Inhibitors of everyday participation in self-management behaviors for adolescents with T1DM. The three categories include Lack of self-accountability, Lack of community support, and Difficulty navigating the healthcare system. The first category, Lack of self-accountability, branched into four subcategories: Demands of T1DM self-management, Embarrassment, Blaming, and Lack of self-responsibility. Four subcategories also evolved from the second category, Lack of community support: Lack of family support, Peers who “don’t understand,” and Conflicts with school nurses. The third category, Difficulty navigating the healthcare system, branched into two subcategories; Poor interpersonal relationships, and Gatekeepers. Conclusions: Transitional programs must cater to the unique psychological, developmental, and disease-specific needs of the adolescent with T1DM to improve competence in self-management skills. Effective transition programs will need to focus on the psychological, behavioral, neurological, neurocognitive, and hormonal influences on T1DM independent self-management.