Patients’ experiences of being diagnosed with multiple sclerosis and their support and guidance needs in the first year of illness

Aims: To describe patients’ experiences of being diagnosed with multiple sclerosis (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. Data were transcribed and analyzed using interpretative phenomenological analysis. Results: Three themes emerged: Frightening to get the diagnosis, needs from family and network, and the importance of continuity in contacts with nurses. The participants struggled with thoughts about serious disabilities and stigmatization, although for some the disease moved more into the background after a period. The patients expressed a need for support and guidance from both families and nurses. They primarily used their families for support, and this was influenced by the family’s emotional involvement. Family members typically did not have the necessary experience to give appropriate guidance. The patients were aware of the impact the disease had on their families, and this sometimes stopped them from seeking support from them. The nurse should develop the contact with the individual patient to become familiar with the patient’s illness narrative and previous