Living at home with eating difficulties following stroke: a phenomenological study of younger people's experiences

Aims and objectives To explore and describe the experience of eating and eating‐related difficulties in stroke survivors living at home. Background The ability to consume food and to take pleasure in eating is an essential part of life. For people with stroke, eating difficulties are frequent. A phenomenological perspective of stroke survivors' experience of eating difficulties exceeding the acute stroke event and in‐hospital rehabilitation is missing. Design A qualitative study founded on the Husslarian descriptive phenomenology. Methods Colaizzi's seven phases of data analysis provided a systematic approach to explore 17 in‐depth interviews from seven participants and how eating difficulties influenced their daily lives. Results Eating difficulties revealed themselves in participants' relationship with the outer world in far‐reaching disruptions of habits, capacities and actions. Four key themes illuminating the eating difficulties emerged: (1) preserving dignity by not conveying serious problems, (2) staying vigilant to bodily limitations, (3) stepping out of the security zone and (4) moving on without missing out. The findings exposed that eating difficulties might not only lead to serious consequences such as malnutrition but also, and equally importantly, lead to losses in the existential, social and cultural lifeworld. Conclusions The experience of eating difficulties entails an ongoing readjustment process, which is strongly influenced by interactions with other people. The findings suggest that individualised long‐term support is needed to facilitated the use of helpful strategies to manage eating difficulties. Relevance to clinical practice The long‐term losses that people with eating difficulties experience are not reflected in conventional screening tools and interventions. To avoid haphazard identification presupposes professional knowledge of how eating difficulties are woven into daily life. This knowledge may inform innovative nursing strategies reaching beyond immediate rehabilitation. Partnership‐based practice may provide an important framework to establish unique needs and to mobilise relevant actions and resources.