Background: Multiple Sclerosis (MS) is perhaps one of the most traumatizing and daunting diagnosis that many people are forced to come to terms with. Research exploring nuances of living with MS in the Indian context is especially sparse. The fact that MS generally affects young adults in the age group of 25-40 and is a progressive illness with no set course of progression or therapy makes its impact even more compelling and life changing.
Objectives: An exploration of lived experiences of families where one person is suffering from MS
To document and understand how members of the family navigates MS as a part of their life
To highlight the nuances of coping processes of each family member as an individual and collectively as a part of the family unit against the backdrop of MS
Methods: In alignment with research objectives, a semi-structured interview schedule with questions pertaining to various areas of illness experience was developed. Each interview was tape recorded and transcribed word for word. In total 8 individuals comprising of 2 pwMS, their spouses and children were interviewed. Interpretative Phenomenological Analysis (IPA) was used for analysis.
Results: 29 Superordinate and 94 Emergent themes were identified across participants. Based on these, 4 Master Themes were identified – MS is challenging, MS means acceptance, Ms is a Forced Fight and Changing relationship with MS. Living with MS poses significant challenges due to the absence of control and agency which it imposes on each family member. Participants appear to choose to focus and limit themselves to today because MS takes away the idea of a predictable tomorrow. Each family member walks on a dual path of trying to accommodate and make space for MS in their life as well as limiting the illness and maintaining control over it. The interviews echoed both a sense of resignation and relinquishing control on one hand and a forced fight at the other end. Family members navigate a dual reality of adjusting to an altered life-space as individuals while witnessing the pain and experience of the pwMS. Lastly, all participants communicate a certain evolution in their relationship with the illness. At one end, it connects to the increasing severity of symptoms and relapses as seen in both pwMS. Another facet is the children navigating from the position of somewhat being an outsider to now experiencing MS as a personal, daily reality. Lastly, it also represents a certain space of participants taming or moving past MS to reclaim normal.
Conclusions: In conclusion, there is a need for moving towards care based models in addition to the current cure centric healthcare models. Family members of individuals suffering from chronic illnesses also deserve attention both as individuals and as caregivers in healthcare services. Lastly, holistic care models which understand MS not just as a physical illness or dysfunction may be developed based on findings of this work and other related research.