‘It kinda sucks’: Illness perception of a group of South African adolescents with type 1 diabetes mellitus

Abstract

Background: Living with diabetes is challenging, especially for adolescents at risk of poor glycaemic control. Understanding the illness perceptions of this group is important to be able to develop interventions for this growing population in need.Aim: This study explored the illness perception amongst adolescents living with type 1 diabetes (T1D) and how these perceptions interacted with the management of T1D.Setting: This study was conducted at a medical centre providing care for adolescents living with T1D in Parktown, South Africa.Methods: A qualitative, explorative design with semi-structured interviews was followed. A non-random purposive sampling method was utilised. The illness perception amongst eight adolescents, aged 12–18 years, at risk of poor glycaemic control, was analysed through thematic analysis.Results: Two subthemes related to illness perception were generated, namely (1) illness perception of T1D is negative and (2) living with T1D leads to a sense of being different. Furthermore, two subthemes were generated in relation to how illness perceptions interacted with diabetes management, namely (3) management of T1D is challenging and (4) management of T1D is motivated by fear.Conclusion: This group of adolescents with at-risk glycaemic control believed that T1D is difficult to manage, leading to a largely negative perception of the disease. This study contributes to the body of literature on adolescents where illness perception may play a role in adhering to diabetes care plans. This research may give additional insights into the awareness of illness perception in designing successful interventions.

Continuous glucose monitoring empowers adolescents to take responsibility of diabetes management

“…27 This new normal was created over time and involved an emotional progression from a range of negative emotions (such as disappointment, sadness and frustration due to feeling different from their peers) to experiencing a sense of normalcy in their daily lives since using CGM, specifically because medical emergencies were less likely with proper management. Negative emotions experienced by adolescents living with T1D are well documented, 28,10,11 but it is important to note that participants in our study also reported feeling empowered by using the monitoring device and experiencing less anxiety as CGM allows individuals to better manage and intervene in their diabetes care plans as it results in the achievement of predictability and control. 16 This feeling of empowerment is similar to the findings of Jonker, 10 who reported that adolescents living with well-controlled diabetes perceive T1D to be manageable and within their control.…”

“…This is in stark contrast with the study of adolescents living with uncontrolled T1D being motivated to adhere to diabetes care plans by fear. 11 The difference in motivating factors for treatment adherence is crucial for the adolescents' well-being -being motivated by fear leads to negative psychological outcomes, whereas our group experienced being empowered by CGM to manage their diabetes better. This finding is similar to those of authors who reported that as adolescents felt more in control of diabetes management, they were encouraged to accept more responsibility for their diabetes management.…”

“…It is also important to note that in both studies participants reported that managing diabetes made them 'different' from their peers, adding to the experience of emotional distress. 10,11 Technological advancements in blood glucose monitoring have led to the development of continuous glucose monitoring (CGM), which provides a sustained, visible measure of variations of the individual's glucose levels in real time. 12,13 Research has shown possible treatment outcomes improvement when using CGM, 14,15 while the psychological barriers and benefits that accompany the use of CGM systems have indicated that employing this facility to form part of the diabetes care plan holds multiple benefits for the users.…”

“…Jonker 10 reports that adolescents with well-controlled diabetes viewed the condition as manageable and a part of their lives. In contrast, Lesage 11 reports that adolescents with uncontrolled diabetes viewed the condition’s management as challenging and were mostly motivated by fear to adhere to the diabetes care plan. It is also important to note that in both studies participants reported that managing diabetes made them ‘different’ from their peers, adding to the experience of emotional distress.…”

Diabetes knowledge and associated factors in adolescents and young adults with type 1 diabetes in Ouagadougou (Burkina Faso)

“…However, studies in the USA and France found that better diabetes knowledge is associated with glycemic control [16,17], which may suggest the involvement of others factors like socioeconomic status or illness perception for example. It was described in South Africa that adolescents with at-risk glycemic control believed that T1D is di cult to manage, leading to a largely negative perception of the disease [20].…”