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Understanding the incomprehensible: patients' and spouses' experiences of comprehensibility before, at and after diagnosis of amyotrophic lateral sclerosis.
Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg.
University West, Department of Health Sciences, Section for nursing - graduate level.ORCID iD: 0000-0003-0208-4343
2017 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed) Published
Abstract [en]

Background: Previous studies have examined manageability and meaningfulness in amyotrophic lateral sclerosis (ALS), but there is a lack of studies examining the comprehensibility of ALS among patients and their spouses. Aim: This qualitative retrospective study aimed to illuminate patients' and spouses' experiences of comprehensibility in ALS from a long-term perspective, when symptoms appeared before diagnosis, and when the diagnosis was given and in life after diagnosis. Methods: Individual semi-structured interviews with 14 patients and 13 spouses were performed. The transcribed interviews were subjected to qualitative content analysis. Findings: Through the whole disease process, patients and spouses feared the unknown regardless of whether they comprehended the disease or not. They described that they before diagnosis felt uncertainty. It was problematic to comprehend what was wrong and what the deterioration implied. At the diagnosis, they described feelings of losing their foothold. Long-term after diagnosis, they still lived in fear and looked for reasons why they were afflicted. Conclusions: Findings of similar experiences in comprehensibility between patients and spouses strengthen the importance of support and information to both parties. Since they hovered between comprehensibility and incomprehensibility during the whole disease process, it is important that their questions, fears and worries are met, from the first visit at hospital and through the whole process. Multiprofessional teams, such as ALS teams and palliative teams can from a holistic perspective increase the possibility of meeting their needs in their unique situation.

Place, publisher, year, edition, pages
Nordic College of Caring Sciences , 2017.
Keyword [en]
amyotrophic lateral sclerosis; comprehensibility; interviews; motor neuron disease; qualitative content analysis; sense of coherence; spouse
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-11467DOI: 10.1111/scs.12492PubMedID: 28869647OAI: oai:DiVA.org:hv-11467DiVA: diva2:1140243
Available from: 2017-09-11 Created: 2017-09-11 Last updated: 2017-09-11Bibliographically approved

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Hällgren Graneheim, Ulla

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