Trying to take control while attempting to adapt: perspectives of people with multiple sclerosis on the twelve months following diagnosis

Multiple Sclerosis (MS) is a neurological condition often characterised by its unpredictability, and lack of known cause or cure. As the leading non-traumatic cause of disability in young adults (Marrie, 2004), a diagnosis of MS is likely to bring uncertainty to those affected, as the future ramifications are unable to be foreseen (Costello and Harris, 2006). Considering the present trend toward self-management in chronic conditions, it is of utmost importance to take the perspectives of people with MS (PwMS) into account when conducting research into behaviour following diagnosis. The current study was exploratory in nature, with a focus on gaining information on individuals’ MS related experiences prior to, and at the time of, diagnosis. A further focus of the study was to identify and further clarify the post-diagnosis behaviours and lifestyle changing activities exhibited by individuals in the first 12 months following diagnosis. The 12 months following diagnosis was chosen for examination as it may be a critical time for PwMS to establish the key coping resources, strategies and behaviours needed to adapt to the diagnosis, and has been rarely examined in studies on MS. Another unique feature of the current study was the global representation of PwMS. Participants in the current study were 243 females and 52 males from 18 countries. Both quantitative and qualitative data were obtained using an online self-report measure that was linked to the MS Australia website. Results showed that participant reports on MS related experiences prior to and during the first 12 months following diagnosis of MS varied widely. Variability included the number of exacerbations prior to diagnosis, and the types of symptoms and whether admission to hospital occurred prior to or at the time of diagnosis. On examination of the behaviour engaged in by PwMS in the 12 months following diagnosis, there was a wide variety of examples given by participants, with information seeking the most identified activity. Lifestyle changing activities reported by participants were also numerous, with changes to diet or vitamin intake the most common. Three key demographic variables (gender, type of MS, and country of birth) were examined to ascertain their possible effect on MS related experience. Minor differences were found between male and female participants and included a higher proportion of females reporting suspicion of MS prior to diagnosis and an increased interest in spirituality in the 12 months following diagnosis, than males. Generally, the differences found between participants grouped into the five types of MS were expected. There were few differences found between participants based on their country of birth indicating that the experiences of PwMS prior to, and at the time of diagnosis, and in the 12 months following, may be considered somewhat universal. Qualitative findings were based around participant perspectives of the discussion of diagnosis with another PwMS; the reasons given for disclosure of diagnosis to others; and the factors that participants identified as being of assistance, or hindrance, to their coping within the first 12 months following diagnosis. The prominent theme throughout the qualitative results was participants’ desire to take control of lifestyle changing activities post-diagnosis, and further research into the use of taking control as a coping resource by PwMS is warranted. Attempting to take control of an uncontrollable disease during the 12 months following diagnosis seems imperative for most PwMS, and health professionals may be able to take a key role in advising appropriate avenues for this when working with those newly diagnosed with MS.