Living in two worlds - The lived experience of young people with type 1 diabetes: A phenomenological study

Adolescence can be a challenging period in a young person's life, without contending with health conditions. Young people diagnosed with a chronic health condition such as type 1 diabetes experience lifelong changes that some find difficult to accept and cope, while others cope quite well. With the incidence of type 1 diabetes rising amongst young people, understanding their lived experience is important if healthcare professionals are to provide adequate, contextual and appropriate care.

   The aim of my research was to explore, describe and understand what life was like for young people aged 16-24 years with type 1 diabetes, living in rural Victoria, Australia. The challenges faced, and the impact type 1 diabetes had on their lives, were central issues explored. This research aimed to inform healthcare professionals about participants’ experiences, improve the healthcare experience of rural young people and utilise findings to inform practice, thus enabling healthcare professionals to tailor care. The participants’ experiences may also resonate with other young people with type 1 diabetes and highlight shared experiences. The experiences of the participants were captured using van Manen’s hermeneutic phenomenology. Ten participants were interviewed. Interviews were recorded and transcribed verbatim. The interview text was thematically analysed to identify common themes. Participants also provided visual examples of their lived experience in the forms of photographs, drawings and collages/posters. Interpretations of the artwork were provided by participants themselves, adding further depth, richness and rigour to their lived experience descriptions and themes.

   Five themes were identified. Following diagnosis, participants perceived themselves as being different from others: being different. As time passed they began to discover they were unable to control aspects of the condition and the impact this had on their lives, however they also discovered aspects they could control: being in control. The condition had significant impact on their life and infiltrated their personal, family, social, school and work life; impact on self and others. Participants began to feel exposed by the condition, especially in public and when interacting with strangers unfamiliar with their diagnosis. Some interactions were negative, while others encouraged conversation, questions and education: perceptions of others. The final theme refers to participants looking ahead and into their future and what that life may look like from now. Participants were aware of the complications of type 1 diabetes, but there were also thoughts of family, travel and the possibility of improvements in management and being hopeful of a cure: thoughts of the future.
 
   The essence of their lived experience was a sense of living in two worlds and the concept of intentionality. Participants experienced an interplay or dance between a world of the everyday and everyone else, and a world living with type 1 diabetes, with the aim of achieving balance between the two worlds. This research argues that healthcare professionals may be better placed to provide relevant, contextual and adolescent specific care to young people experiencing a chronic condition, if they appreciate the impact type 1 diabetes has on a young person at various points in their life. Tailoring care that ‘fits’ into the young person’s life is necessary, if healthcare professionals are to best meet this group’s needs. Grasping the meaning of their experiences provides insight into how this group of participants managed living in two worlds and what they required from others around them to ensure they continued living well with type 1 diabetes.