The narrative-autobiographical approach to education and care in diabetes

From a pedagogic perspective, the introduction of the narrative approach into medicine in the 1960s prompted a change in the way healthcare professionals think about education and care of people with chronic conditions (see glossaryfor an explanation of selected terms).

The narrative approach is a model that helps us to understand and explain reality by considering the external world as a complex text that can better be described and understood starting from each person’s subjective interpretations of reality.

From an evidence-based medical perspective, the narrative model was defined by Rita Charon (2001) as the ability to acknowledge, absorb, interpret and act on the stories and plights of others and was proposed as a model for humane and effective medical practice.

The autobiographical approach
Within the narrative model, the autobiographical approach represents an effective way of helping people to reveal needs and feelings related to their condition (DasGupta and Charon, 2004). In it autobiography becomes a tool through which individuals’ life histories can be discovered, explored and interpreted by thinking about their life history and recalling episodes and experiences that are part of their identity. From this perspective, an autobiography represents a very effective technique in aiding the development of self-awareness, self-training and the continued discovery of one’s innermost feelings.

When dealing with chronic conditions such as diabetes, autobiographical illness stories pave the way for a management strategy that is no longer only a transference of knowledge and techniques, but a chance for the individual to grow and make changes (Aronson, 2000). This means that patient education and care, as complex phenomena, cannot be reduced to universally valid predefined procedures and programmes. Therapeutic patient education becomes a process through which, by using a narrative-autobiographical model, people can gain awareness of their own condition and understand the real meanings they give to themselves, to others, to the external world and to diabetes.

Autobiographical approach in diabetes camps
Since 2004 the authors have been using the narrative-autobiographical approach with teenagers and adults with type 1 or type 2 diabetes during 3 or 9 day residential camps, in order for them to take advantage of the emotional benefits of self-writing and anonymously sharing this with peers. At these camps, along with the traditional training on the practicalities of how to handle their diabetes, every day for two hours the attendees, who volunteered through their local diabetes associations, are invited to write about themselves and their experiences. This is in an effort to deal not only with the biological consequences of diabetes, but also with the deeper meanings people attach to their everyday life and medical history. Those who were unable to write are offered help with the writing. See Box 1 for a selection of the suggested writing prompts. The following quotes are from writings by two people with type 1 diabetes concerning the important topic ‘The day when I first discovered I had diabetes’. 

‘Like a bolt of lightning out of a clear sky, fear entered my life, tears (a rare occurrence) flowed plentifully, happiness abandoned me, my mother’s forcefully optimistic words, the doctors’ encouragements, friends’ warmness, a nurse’s touching smile, the forced cohabitation with insulin – like a marriage – or even better, a new life made of responsibilities that emerge, the hope that diabetes is like the flu, resignation, then hope again but with the sour consciousness of reality. My first day with diabetes is like this, I haven’t yet taken it in, I am calm: I go to the doctor and an hour later I find myself lying on a bed with a drip, I clear my mind and new thoughts, remote and never thought before, get incessantly stuck in my mind, going through the mind to the heart, where they will stay for God-only-knows how long…’

‘I stopped believing in Father Christmas at the age of 8. At 15 I accepted the fact that I did not own a perfect body. Sometimes I think I understand the meaning of life, though this enlightenment only lasts a fraction of a second. I don’t remember ever saying “I accept being ill”. Diabetes is an old childhood friend. One of those friends that your parents introduced you to when you were very young and that walk along with you for a long time: you do not remember how you met, you only know it has always been there. I did not accept it, I absorbed it.’

After the 2004 and 2005 summer camps with teenagers, the authors investigated the educational and therapeutic impact of the autobiographical approach (Piana, 2006). This was achieved by analysing the reflections and experiences of young people aged 13–18 years through non-structured questionnaires and open-ended questions submitted to participants one year after the c’ these were answered by 70% of the teenagers who attended (see Box 2) – none said they had not benefitted from the camps. The narrative material was analysed qualitatively according to the Grounded Theory method (Glaser and Strauss, 1967). This method consists of extracting semantic units from the writings through a process calledconceptual labelling and grouping the units into various categories by a process of understanding and interpretation. 

In the author’s opinion, one of the most important results that emerged from the questionnaire was the change reported by teenagers in the meaning and perception of themselves and their condition; and, consequently, in self-care behaviours, as shown in Box 3. The results of the questionnaire have been published as a doctoral thesis (Piana, 2006).

Below are examples of writings by health professionals, written at the end of a 9-day course, where they had witnessed and experienced the use of the narrative-autobiographical approach themselves.

‘I confess that my first impact was traumatic: the new approach to diabetes destroyed my certitudes, which had been carefully put together in so many years of professional activity. I felt as a child from whom the bicycle stabilisers have been taken away… Today, thanks to this camp, I look at those who have diabetes with new eyes, aware that behind this condition there is a boy, a child, an adult, with thousands of facets (joy, anxiety, pain, fears, inspirations, loneliness). All things that up to now I had just overlooked when meeting the patient in the formal routine of the daily management of diabetes.’

‘The camp gave me the opportunity to live a different “diabetes”. The opportunity for new reflections, new knowledge, distinct spheres. Patients made me dig deeper and see what I perhaps did not want to see: their tiredness of living within predefined schemes… our schemes.
Am I now capable of modifying my attitudes?
Will I be able to recall what I have experienced? 
Will I be able to accept?
I think I will – thinking of them.
I think I will – thinking of their voices, their reactions, their spoken and unspoken feelings, their eyes.’

Discussion
Nowadays the narrative-autobiographical approach in therapeutic patient education is being increasingly appreciated and introduced in the care of people with diabetes; not only as a self-care tool for the person with diabetes, but also in nurse–patient relationships and in patient education groups at the hospital.

By inviting people to write about themselves and their perception of their diabetes, health professionals can help them to give voice to their problems, to reach a better self-comprehension and to share, through the reading of writings, their own life experience with others. 

The narrative-autobiographical approach makes the change from being alone to being one of a crowd, from silence to speaking, from needs to aspirations, from knowledge of experience to experience of knowledge and from death in life to a full life.