Understanding Persons with Eating Difficulties and Communication Impairment after Stroke : Patients Experiences and Methodological Issues in Qualitative Interviews

Abstract: Difficulties with eating are common after stroke and are often associated with communication problems. Although numerous aspects of dysfunction have been identified, little is known about the experiences of living with eating difficulties after stroke. A few researchers have attempted to explore how best to ensure that the voices of people with communication impairment can be captured in qualitative research interviews, but several methodological issues related to including this population in qualitative research have remained unexamined. The purpose of the thesis was to illuminate the phenomenon of eating difficulties after stroke and to discuss methodological issues involved in interviewing persons with communication impairment. Study I had a qualitative, descriptive design involving repeated interviews and participant observations with three persons 1½ years post-stroke. Eating difficulties after stroke were experienced as Striving to live a normal life with the sub-themes Abandoned to learn on one’s own, Experiences of losses, and Feeling dependent. The findings showed that “eating difficulties after stroke” is a complex phenomenon, and that, based on the experiences of stroke survivors, there is a need for health care professionals to develop and use methods for eating training and other forms of support during the continuum of care. The combination of repeated interviews and participant observations seemed to be an approach that should be tested in larger studies. Study II was a methodological exploration based on the experiences gained in Study I and in a qualitative study involving persons with traumatic brain injury. Methodological issues related to sampling, obtaining informed consent, and fatigue in participant and researcher were discussed, and strategies for conducting qualitative interviews with these populations were suggested.