Living with diabetes in adolescence: a mixed methods study

Abstract

This study aimed to understand how adolescents experience type 1 Diabetes (DM1) and if their experiences are associated with their illness perception. Participants were 32 teenagers, aged 12 to 18 years from a pediatric endocrinology clinic in Oporto. As part of a larger research project, patients completed the Brief Illness Perception Questionnaire (IPQ). They were also asked to write a text about†What is it like to have DM1â€. The texts were explored through a thematic analysis and a core theme emerged supported by 7 subthemes, all related to the process of “negotiating a sense of normalcyâ€. Results from Brief IPQ show that adolescents perceive their illness as relatively benign. Moreover, qualitative findings illustrate how adolescents experience their everyday life in the presence of the disease and the strategies used to maintain and improve a sense of normalcy. Significant associations between the scores for illness perceptions and the frequency of subthemes were found, namely showing that higher coherence beliefs were associated with a less frequent reference to the subtheme “things I can´t do†(r= -0,445; p= 0.011), suggesting that a coherent understanding of DM1 helps adolescents to feel less affected by the disease. For clinical interventions aimed to promote adaptation of young people with diabetes findings of this study point to the need to focus on normalizing their lives and to foster more positive illness beliefs as well as the development of coping strategies, as a way of compensating the restrictive and undesirable impact that DM1 has on their lives.