Patients experiences to get diagnosed with Multiple Sclerosis (MS) and their needs for support and guidance in their first year with the disease

Bidragets oversatte titel: Patienters oplevelse af at blive diagnosticeret med Multibel sklerose og deres behov for støtte og vejledning i deres første år med diagnosen

    Publikation: Konferencebidrag uden forlag/tidsskriftKonferenceabstrakt til konferenceForskningpeer review

    Abstract

    ABSTRACT
    Purpose: To describe patients’ experiences of getting the diagnosis of MS and their needs for support and guidance in the first year with the disease.
    Methods: A qualitative semi-structured interview-study with five patients with MS was conducted, transcribed, and analysed using Interpretative Phenomenological Analysis. Three themes emerged: The experience of getting the diagnosis, Family and network, The relationship to the nurses in the MS-clinic.
    Results: Getting diagnosed with MS initiated thoughts about serious disabilities and stigmatisation. The patients experienced a primary need for support from their families. The families had difficulties giving a focused support and guidance towards the experienced issues of the patient because the families themselves was emotional involved. There is a need for nursing that focuses on support and guidance that considers the patient and the family/network gathered challenges and resources as in family-focused nursing. Patients need a holistic approach where their personal stories are incorporated as part of the course of treatment. The patients experienced that the relation to a specific nurse (contact-nurse) was important when talking about emotional difficulties. They experienced a need for support and guidance depending on the current issues.
    Conclusion: The patients struggled with thoughts about serious disabilities and stigmatisation. They wanted support and guidance from both families and nurses. The families support and guidance was influenced by their emotional involvement. The nurse must obtain a relation to the patient and have a holistic view on the patient.
    Family-focused nursing and contact-nurses might be a solution providing targeted support and guidance.
    Bidragets oversatte titelPatienters oplevelse af at blive diagnosticeret med Multibel sklerose og deres behov for støtte og vejledning i deres første år med diagnosen
    OriginalsprogEngelsk
    Publikationsdato2019
    StatusUdgivet - 2019
    Begivenhed11th EANN Quadrennial Congress - Manchester, Storbritannien
    Varighed: 19. mar. 201922. mar. 2019

    Konference

    Konference11th EANN Quadrennial Congress
    LokationManchester
    Land/OmrådeStorbritannien
    Periode19/03/201922/03/2019

    Citationsformater