Background: A physical illness causes pain and suffering to not just the person who is diagnosed but also impacts the lives of family members and loved ones. As an illness, MS is characterized by unpredictable and uncertain disease course, variability of symptoms, difficult treatment protocols and the absence of a definitive cure. Literature points that each family member is impacted by the uncertain, unpredictable and uncontrollable nature of illness which becomes a constant contextual reality in their lives.
Objectives: MS is a daily reality for the person with MS (pwMS) and their family which bears impact on their identity, selfhood and life experiences. This study attempts to highlight the nuances of living with MS as experienced by pwMS and their family members.
Methods: A qualitative methodology was chosen to achieve the research objectives. Interpretative phenomenological analysis (IPA) was chosen as it is particularly suited for health psychology because of its ability to focus on individuals attempt to make sense of an experience. In alignment with IPA, a purposive, homogenous sample was chosen for the study. Initial contact was made with 15 pwMS out of which 9 gave consent at the first stage. Data from 4 families is included in this work. Two families comprised of pwMS, their spouses and two adult children. The other two families comprised of pwMS and their spouses only. However, pwMS3 had a 5 year old daughter at the time of interview. Thus, data from 12 participants belonging to 4 families has been included in the present study.
Results: 43 superordinate themes and 144 emergent themes were identified across the 12 participants. Based on this, 5 master themes were found to be common across all 12 participants. The 5 master themes were – MS is challenging, MS means acceptance, MS is a forced fight, Changing Relationship with MS and MS is not Identity. Analysis revealed the challenges and difficulties faced by individuals as they navigate their life in context of MS as an ever present reality. An insight into the mechanisms, processes and strategies employed by each individual was gained through the use of IPA. Common threads across families and across all participants were noticed and helped understand how coping is both individualised and collective at the same time.
Conclusions: This research highlights the need for comprehensive care practices that address physical, emotional and mental health burden of MS. Through the experiences of responsdents, it is clear that MS is not just limited to navigating symptoms or attacks but also imprints upon every aspect of life for both pwMS and their family members. MS is almost like a shadow for the participants as it impacts all choices, experiences and decisions. Thus, a need for moving away from cure models of healthcare and focusing on a care based model which addresses the people who are dealing with illness is underlined.