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Stroke and eating difficulties: long-term experiences
Örebro University, Department of Health Sciences.ORCID iD: 0000-0002-0714-0167
Örebro University, Department of Health Sciences.ORCID iD: 0000-0002-3964-196X
Örebro University, Department of Health Sciences.
2004 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 13, no 7, p. 825-834Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2004. Vol. 13, no 7, p. 825-834
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-3041DOI: 10.1111/j.1365-2702.2004.01023.xOAI: oai:DiVA.org:oru-3041DiVA, id: diva2:136590
Available from: 2009-01-12 Created: 2009-01-12 Last updated: 2017-12-14Bibliographically approved
In thesis
1. Communication about eating difficulties after stroke: from the perspectives of patients and professionals in health care
Open this publication in new window or tab >>Communication about eating difficulties after stroke: from the perspectives of patients and professionals in health care
2009 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Kommunikation om svårigheter att äta efter stroke : ur patienters och vårdpersonals perspektiv
Abstract [en]

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.

Place, publisher, year, edition, pages
Örebro: Örebro universitet, 2009. p. 92
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 22
Keywords
Continuity of care, documentation, eating difficulties, nursing, qualitative interview, record audit, stroke
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-2712 (URN)978-91-7668-647-8 (ISBN)
Public defence
2009-02-13, Wilandersalen, M-huset, Universitetssjukhuset, Örebro, 13:00 (English)
Opponent
Supervisors
Available from: 2009-01-12 Created: 2009-01-12 Last updated: 2017-10-18Bibliographically approved

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Carlsson, EvaEhrenberg, AnnaEhnfors, Margareta

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