How people with mitochondrial disorders construct knowledge within the health care relationship : a narrative inquiry

Mitochondrial disease is an inborn error of metabolism that has a wide variety of manifestations. Because it is difficult to diagnose, people may live with the disorder without medical answers for many years. During this time, they struggle to have their personal knowledge about their bodies accepted and validated in the health care system. Once the disorder is diagnosed, there is no cure and few effective treatments. Narrative inquiry, a qualitative research method, was employed to explore how adults with mitochondrial disease construct knowledge about their disorder and how they use it within the health care relationship. Thirteen people were interviewed. The content, structure, interpersonal factors, and context of their narratives were analysed to interpret overall meaning. One main narrative, "you can't sit back and be the patient", and two sub-narratives, "there was no magic out there" and "now I'm the educator" emerged from participants' stories. Many narratives were composed of a combination of the two subnarratives. Some individuals only told "there was no magic out there" stories. "You can't sit back and be the patient" represents the awareness that mitochondrial disease is not widely known or understood by health care professionals or the general public. Individuals realized that the traditional concept of 'patient' did not apply to mitochondrial disease and that it therefore required reconceptualization. The shared subnarratives embodied their reactions to this realization. "There was no magic out there" is the classic chaos story, replete with complications and void of action. These stories were told by individuals who were overwhelmed by their circumstances. "Now I'm the educator" is the classic story of quest. These individuals created negotiated knowledge from their formal, experiential, and bodily knowledge to manage uncertainty and selfadvocate in the health care system. The findings had several implications for changes in practice including patient education, health care professional education, and model of care. Overall, the findings indicate that what is needed is a paradigm shift in what counts as knowledge, reducing feelings of frustration, vulnerability, and uncertainty within the health care relationship and improving the quality of life for individuals with mitochondrial disease.Education, Faculty ofEducational Studies (EDST), Department ofGraduat