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The lived experience of a chronic illness : challenges, dialogues and negotiations in adherence and non-adherence : a phenomenological study from the perspective of the person with diabetes


The aim of the study was to explore what it is like to have a complex regimen prescribed
when living with a chronic disease like diabetes, and what happens in patients’
relationship with healthcare professionals when they do not adhere to the treatment
The research approach was phenomenology, and the research method unstructured
interviews or dialogues. The findings were constructed from 16 dialogues with 11 persons
with diabetes, whom were seen as co-researchers. The data analysis was guided by the
Vancouver School of Doing Phenomenology.
The findings reveal a dynamic experience, full of conflicts, which can be understood as a
constant attempt to live a normal and fulfilling life by balancing the regimen with
physical and psychosocial wellbeing. Empirical knowledge is juggled with own
experience to gain understanding and place oneself within the context of the disease as
well as social context. Strict adherence to the regimen may threaten the person’s need for
autonomy. Extreme periods of self-deception give way to a sense of responsibility,
defining what constitutes quality of life and struggling to integrate a modified treatment
regimen with it. Respecting the disease without letting it dominate one’s life is the key for
successful integration. Different desires are in conflict, ‘to do right’ competes with the
desire to be normal or give in to temptations that disturb blood-sugar control. Finally,
overcoming fear is an important part of the experience; the remote fear of diabetes
complications as well as the daily fear of hypoglycaemia and the truth.
The participants in this study described how healthcare professionals use different
communication approaches, enabling or disabling, that influence the adherence
experience for better or worse. It is concluded that the lived experience of adherence and non-adherence is a complex,
dynamic and multistructured phenomenon, which the dominant biomedical model that
tends to guide healthcare professionals’ practices fails to describe sufficiently. It is deeply
ethical in nature, it involves two parties, the patient and the healthcare professional, and
conflicts may be created in their interaction, between the three ethical principles that
guide practice: respect for autonomy, beneficence and justice. The challenges that meet
the person with diabetes are dealt with by negotiating with oneself and healthcare
professionals can provide support with authentic dialogues, based on respect and trust.
Further studies on the issue of adherence are needed in order to enhance understanding
and improve the healthcare services provided for patients who have difficulties with the
management of their disease.


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