On the path together: Experiences of partners of people with multiple sclerosis of the impact of lifestyle modification on their relationship

Abstract

Multiple sclerosis (MS) has a major impact on the relationship of couples living with the illness. Although some positives of dealing with MS as a couple have been identified, MS has been associated with higher rates of relationship breakdown and worse Quality of Life (QOL) for both people in the relationship, especially if the person with MS experiences a decline in mental or physical health or develops disability. Modification of lifestyle‐related risk factors has been associated with improved outcomes for people with MS, including physical and mental health‐related QOL, and these improved outcomes may lead to improved experiences for their partners. We aimed to explore the perspectives and experiences of the partners of people with MS, when the people with MS had undertaken an intensive residential workshop regarding healthy lifestyle, to understand the impact of MS and lifestyle modification on these partners’ experiences of their relationship. Within the framework of Heidegger's interpretive phenomenology, semi‐structured interviews were thematically analysed. Participants were in a spousal relationship with people with MS who had attended an intensive residential workshop regarding modification of lifestyle‐related risk factors between 2002 and 2016. Participants lived in Australia, New Zealand, the United Kingdom and Europe. Three major themes were identified relating to the couple's relationships: providing support, remaining connected and togetherness. Aspects of these themes, not commonly previously reported, included the personal and relationship benefits experienced from providing support with lifestyle modification, improved communication, and the resultant greater sense of closeness. These experiences of partners of people with MS improve our understanding of both the complexities of living with MS and adopting lifestyle modification, and suggest some potential benefits to relationships.

Conducting dietary intervention trials in people with multiple sclerosis: Lessons learned and a path forward

“…We highly recommend inclusion of partners/significant others in educational sessions, as we have found this to be effective with respect to improving engagement and understanding the requirements of commitment to the study at home. In our studies, participants whose partners agreed to change their dietary habits to accommodate study recommendations reported greater ease of implementing the dietary intervention, as it increased the likelihood that a single meal could be prepared for the household rather than requiring separate meal preparation; these observations are largely consistent with findings from qualitative studies from other groups (Neate et al, 2019). Depending on the specifics of the intervention, the family dynamic, and prior dietary habits, it may or may not be feasible to extend the diet plan to include children or other household members.…”

Intertwined like a double helix: A meta‐synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis

“…Uncertainty about MS diagnosis, treatment, prognosis and management underpinned the experiences and concerns of people living with a person with MS. The unpredictable trajectory of MS was presented as a constant source of worry for partners, 43,44,46,47,51,58,68,70 carers, 25,[34][35][36]39,42,65 support persons, 23 Young carers felt unsupported and isolated.…”

“…65 The most valued coping strategy was maintaining personal well-being and taking time out for themselves, 24,36,37,43,48,58,62,[65][66][67] and speaking to someone about their situation to relieve emotional tension. 23,26,28,47,51,58,65 Social support from friends and family members was a key enabler for children of a person with MS. 27,28,30,54,59,64 Some participants found that even though they might have been placed in situations outside their comfort zone, they learned to be adaptable, face challenges and develop new skills, 35,40,44,47,48,60,66,70,71 connect and communicate better with their partner 70 and reassess their lives to determine what they most valued. 66 Others learned to value and embrace their role as a carer, feeling a sense of pride and accomplishment.…”

Dating with a Diagnosis: The Lived Experience of People with Multiple Sclerosis

“…Research to date has focused on the impact of MS on marriage or long-term relationships [4][5][6][7] However, there is currently a gap in the literature exploring the dating experiences of people with MS.…”