Telling It like It Is: The Lived Experience of Young People with Type 1 Diabetes in Rural Australia

Purpose:

The purpose of this research is to provide an understanding or awareness of what life is like for a young person with Type 1 diabetes living in a rural environment, the challenges they face and the impact (or influence) chronic illness may have on these aspects. Healthcare professionals will be better placed to provide relevant, contextual and adolescent specific care to young people experiencing chronic illness; care that takes into consideration the impact Type 1 diabetes has on a young person at various points in their life by tailoring care that ‘fits’ into the young person’s life. There was a plethora of literature relating to management of symptoms, control of glycaemic levels complications, lifestyle, insulin pumps, activity, nutrition, monitoring and more importantly, searching for a cure; this list is not exhaustive. The missing link appeared to be a lack of published research into the actual meanings of experiences had by young people with type 1 diabetes. 

Methods:

A qualitative approach was implemented and underpinned by Max van Manen’s method of phenomenological inquiry. Phenomenological inquiry provides opportunity to explore and describe lived experience of a particular phenomenon, to ‘paint a picture’ of what living with type 1 diabetes is actually like. The challenges faced and the impact (or influence) chronic illness may have will be highlighted. Participants were male or female, 16-24 years of age, living in rural Victoria Australia, and had type 1 diabetes. Interviews were digitally recorded and transcribed and transcriptions analysed for themes, utilising van Manen’s approach to phenomenological inquiry. Themes were utilised to describe what life is like for young rural people with type 1 diabetes, essentially, their lived experience.

Participants were also invited to participate in creating an individual piece of art (of their choosing) that represented their experience of having type 1 diabetes while living in a rural setting. They were asked to interpret the artwork to the researcher, thus adding further depth to their lived experience. The artwork took various forms and included drawings, paintings, photograph/s, poems etc. 

Results:

Results continue to be under investigation. At present participants were provided with a voice to tell their story of what life is like living in a rural setting with type 1 diabetes with the aim to inform healthcare professionals about the participants’ experiences. Results will  strive to improve the care of young people with type 1 diabetes living in a rural setting by the development of recommendations enabling healthcare professionals to tailor care provided to young people. Results will also inform other young people with type 1 diabetes about the participants’ experiences so that these experiences may resonate with other young people

Conclusion:

Adolescence can be a time of great change both physically and emotionally and is a challenging period in a young person's life, even without alterations to their health. Adolescents diagnosed with a chronic illness, such as type 1 diabetes experience lifelong changes that some may find difficult to accept and cope with. Being adolescent, living with a chronic illness and residing in a rural environment triples the challenges. Healthcare professionals will be better placed to provide relevant, contextual and adolescent specific care to young people experiencing chronic illness; care that takes into consideration the impact type 1 diabetes has on a young person at various points in their life by tailoring care that ‘fits’ into the young person’s life. Support networks and programs can be designed specifically to meet the needs of young rural people with type 1 diabetes.