Table 5

Examples of self-management and changes over time

InterviewP01P05P21
Pretransitioning
context
She was diagnosed with SPMS from the start. Before the MS diagnosis, she had a higher managerial role, which she left after her diagnosis.He transitioned to SPMS 6 years after initial diagnosis. Before the MS diagnosis, his job taught him how to anticipate risks and plan accordingly.She transitioned to SPMS 23 years after initial diagnosis. Before the SPMS diagnosis, she was diagnosed with depression and other long-term conditions.
First interviewShe reduced her activities, but she was OK with that. She had to change her goals to simpler more achievable ones. She did not need to see a psychologist to help her adjust. She would have liked to volunteer, but she could not commit to it.He planned meticulously so he can carry on his usual activities and attended MS self-management workshops. Keeping busy and planning helped him to deal with worries about the future. He was involved with MS charities and MS research to help others and also learn more about MS.She tried to plan everything but sometimes planning was too much and it was not worth the trouble. She wanted to exercise and see her friends more, but she was too busy with her healthcare appointments. She believed that you have to do things for yourself not wait for the scientists to find the cure.
Second interviewHer MS symptoms and severity progressed a lot compared with her first interview. She reduced her activities even further. Her neurologist referred her to see a psychologist, but she did not want to see one. She avoided seeing friends as they were shocked by her deterioration. She did not want to see healthcare professionals as it was a waste of hers and their time.His MS symptoms and severity did not change compared with his first interview. He managed to do most of the things he used to do with some alterations or at a slower pace. He was still very happy with the support from his healthcare team and how effectively they referred him to appropriate specialists. He still enjoyed volunteering at the local MS centre and taking part in MS-related research.Her MS symptoms and severity progressed little compared with her first interview. She had to do her research and find out what support is available and how to manage her symptoms and then she would seek the advice from the most appropriate healthcare professional. The help was not forthcoming. She was not feeling low because of MS but frustrated she could not do certain things. She reported very little social activities.
  • MS, multiple sclerosis; SPMS, secondary progressive multiple sclerosis.