Communication about eating difficulties after stroke : from the perspectives of patients and professionals in health care

Abstract: Stroke is one of the major causes of eating difficulties (EDs). It is one of the leading causes of death and disability and one of the most important factors contributing to health-care costs. There is a clear association between EDs after stroke and undernutrition, where studies have shown that structured screening of eating function among stroke patients can predict nutritional problems as well as need for subsequent institutional care. Reliable and valid instruments that can identify EDs exist, but there is lack of knowledge on how persons experience living with EDs after stroke. Stroke unit care is evidence-based and grounded in multidisciplinary collaboration and continuity of care. The overall aim of this thesis is to explore and describe EDs after stroke as represented by health care professionals in patient records (PRs) and transferred information, and as described by persons living with EDs after stroke. An additional aim is to explore methodological aspects related to the inclusion of persons with EDs and communication impairment in research studies.Both quantitative and qualitative methods were used. Two studies used descriptive designs (I, II), one an explorative design (III) and one applied a methodological discussion (IV). In one of the studies PR data were used (I), in another study data were derived from three sources: PRs, screening of patients and interviews with nurses (II). Persons with EDs after stroke participated in Study III while literature, empirical data and researchers' experiences served as the data in study IV. Data were analysed by categorisation of phrases (I), content analysis (II) and descriptive statistics (I, II), by qualitative analysis (III) and by processing of literature and empirical findings in two research groups (IV).The main findings from the studies on representation of stroke care in PRs (I, II) showed that, despite that >50% of patients in Study I and all patients in Study II had EDs, there were few signs of multidisciplinary collaboration dealing with this problem. Unsystematic screening for swallowing difficulties was routine, whereas screening for nutritional risk and EDs was lacking (I, II). Multidisciplinary discharge summaries proved to have low quality and entailed little information on patients' eating ability (I). The two EDs most frequently documented were swallowing and lack of energy to complete a meal (I,II). EDs were described in vague terms (I, II). In Study II, all patients had swallowing difficulties and most patients had lack of energy to complete a meal. The electronic information transfer tool held information on eating ability for most patients (II), but the nursing staff in residential home care perceived deficiencies in that information, even identifying several EDs not reported at discharge (II).Experiences from persons living with EDs after stroke were presented in one main theme: Striving to live a normal life, including three sub-themes: Abandoned to learn on one's own (little support from health care professionals to learn to handle eating), Experiencing losses (loss of eating functions and loss of valued activities) and Feeling dependent in mealtime situations (III). One major finding from the methodological exploration (IV) is that creative approaches and suitable methods for inclusion of participants with EDs and communication impairment into qualitative studies can be found in the fields of aphasiology and learning disabilities. Another major finding from Study IV is that researchers need good communication skills as well as knowledge in neuropsychology.A general conclusion is that screening for EDs should be routine in stroke care and that a multidisciplinary terminology to express EDs must be developed to provide accurate information transfer. Health care professionals need to enhance their knowledge in nutrition and provide support to stroke patients with EDs with the goal that they can eat and perform meal-related activities in accordance with their habits before the stroke. To gain access to the experiences of persons with EDs and communication impairment researchers need to test participatory approaches when planning for inclusion of those persons.