Stroke and eating difficulties: long-term experiences

Background. Previous studies have shown that eating difficulties after stroke are common and often associated with communication problems. These difficulties, however, have mainly been studied from a professional perspective. Although numerous aspects of dysfunction have been identified, little knowledge exists about the experiences of living with eating difficulties. Aim. To explore how people affected by stroke experience living with eating difficulties, during a prolonged period. Design. Explorative, qualitative case study. Methods. Repeated interviews and participant observations with three persons 1.5-2 years after their last stroke. Data were analysed using qualitative analysis. Results: Eating difficulties after stroke were experienced as Striving to live a normal life, with the subthemes Abandoned to learn on one's own, Experiences of losses and Feeling dependent. The process of getting back to a life that resembled life before the stroke was experienced as long-lasting and hard work. The informants felt that they were abandoned to manage eating training on their own. The informants experienced a loss of functional eating ability and the ability to perform activities related to food and meals. Feelings of dependence were experienced in mealtime situations. Conclusion. Living with eating difficulties after stroke is a complex phenomenon. The informants felt abandoned because of lack of support from the nursing staff. They were left on their own to deal with the difficult process of adjusting to a new way of eating and losses regarding mealtime activities. The combination of repeated interviews and participant observations seemed to be an approach that should be tested in larger studies. Relevance to clinical practice. This case study indicates a need for nurses to develop and use evidence-based guidelines for eating training during the continuum of care. Nurses need to assess patient's habits and desires related to eating, and to adjust environment according to patient preferences.