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.
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 titel | Patienters oplevelse af at blive diagnosticeret med Multibel sklerose og deres behov for støtte og vejledning i deres første år med diagnosen |
---|---|
Originalsprog | Engelsk |
Publikationsdato | 2019 |
Status | Udgivet - 2019 |
Begivenhed | 11th EANN Quadrennial Congress - Manchester, Storbritannien Varighed: 19. mar. 2019 → 22. mar. 2019 |
Konference
Konference | 11th EANN Quadrennial Congress |
---|---|
Lokation | Manchester |
Land/Område | Storbritannien |
Periode | 19/03/2019 → 22/03/2019 |