Illness perception of adolescents with uncontrolled type 1 diabetes: a thematic analysis

Abstract

Type 1 diabetes mellitus (T1D) is one of the most prevalent common chronic conditions in adolescence. The management of T1D hampers successful navigation into adolescence as many diabetes-related tasks impede on it, which results in negative illness perception of T1D. These illness perceptions have been shown to be associated with long-term beliefs held by adolescents about T1D, by means of which their emotional responses that influence their management of T1D could be predicted. Limited research, mostly quantitative in nature, has been conducted on the illness perception of T1D. However, lacunae remain in research on the illness perception of uncontrolled T1D. This study had two objectives – firstly to explore the illness perception among adolescents with uncontrolled T1D and, secondly, to explore how these illness perceptions contribute to diabetes management. This study utilised a qualitative approach. Non-random purposeful sampling was utilised to select participants. The population sample consisted of adolescents with uncontrolled T1D between the ages of 12-18 years (HbA1c level of 7.5% or above), who attended the Centre for Diabetes and Endocrinology (henceforth CDE) in Parktown, Johannesburg, South Africa. Semi-structured interviews were utilised to gather raw data. Results were analysed using thematic analysis as described by Braun and Clarke (2006, 2013), while four criteria for establishing trustworthiness as held by Lincoln and Guba (1985) was used, including credibility, transferability, dependability, and confirmability. Moreover, four dominant themes were generated based on the raw data gathered during these interviews namely that (1) management of T1D is challenging, (2) perception of T1D is negative, (3) management of T1D is motivated by fear, and (4) living with T1D leads to a sense of being different. The themes were illustrated by using appropriate verbatim extracts from interview responses of the eight participants. The findings indicated that T1D was perceived as challenging to manage resulting in internalisation of the failures around it. Ultimately, it led to the perception that T1D was negative. The adolescents were largely motivated to manage their T1D through fear elicited by threat messages. Additionally, they felt that due to dietary restrictions they were different from their peers, resulting in their engagement in a variety of activities and risky behaviours to prove that they were “normal”. The generalisability of this study is limited since non-random purposive sampling was employed. This demographic variability limits the scope of the study. This does not, however, limit the potential transferability of the study to other settings as qualitative research does not focus on statistics but rather revealing the depth of a phenomena within a specific context. Despite these limitations, the present study adds to the body of knowledge contained in literature on adolescents who have found adhering to diabetes care plans challenging. It lays the foundation for future research into what differentiates well-controlled and uncontrolled T1D, which may ultimately lead to effective intervention strategies to assist people living with T1D to be able to manage their T1D successfully.