Abstract
Introduction: Being in an intimate relationship with a person with multiple sclerosis (MS) may have a substantial impact on the partner's quality of life. Existing research has largely focused on negative impacts of MS for both people with MS (PwMS) and their partners and has sampled the population of partners of PwMS who have primarily adopted standard medical management only. Modifiable lifestyle factors have become increasingly recognized in the management of MS symptoms and disease progression. For partners of PwMS who have undertaken lifestyle modification as an additional strategy to minimize disease progression, the impacts, both positive and negative remain unexplored. This research is unique as it focuses on partners of PwMS who have attempted to adopt major lifestyle interventions outside of the prevailing paradigm of MS management.Aim: To explore and interpret the lived experiences of partners of PwMS who have adopted lifestyle modification, to understand partners' attitudes to and experiences of the effect of MS and lifestyle modification on their life, relationship and view of the future.Method: Design: a qualitative, interpretive, phenomenological study using semi-structured interviews. Participants: English-speaking; aged 18 years or more; in a spousal relationship for 12 months or more with a person with MS who had attended a residential lifestyle educational intervention and undertaken lifestyle modification. Analysis: Interviews were recorded, transcribed verbatim and thematically analyzed using NVivo™ software.Results: Twenty-one partners were interviewed. This paper reports one of the study's themes, the psychological shift experienced by partners of PwMS. Sub-themes included adaptation; loss and grief; difficult emotions; reframing, re-evaluating and re-prioritizing; hope and optimism; empowerment and taking control; and self-awareness, greater understanding and personal growth.Conclusion: Partners of PwMS who have undertaken lifestyle modification experienced a broad range of psychological adjustments. Whilst reflecting the potential difficulties that partners of PwMS may experience, this group experienced a range of positive psychological changes that add to the literature regarding partners' potential experiences and may provide hope for those in partnerships with people with MS. This study provides themes to potentially inform a quantitative study of a larger population of partners of PwMS.
Highlights
Being in an intimate relationship with a person with multiple sclerosis (MS) may have a substantial impact on the partner’s quality of life
We have shown that participation in a residential lifestyle educational intervention (LEI) and/or engagement in lifestyle modification is associated with improved mental and physical health outcomes (Hadgkiss et al, 2013, 2015a,b; Jelinek et al, 2013; Marck et al, 2014; Taylor et al, 2014), improved quality of life and less disability in those affected by the disease (Jelinek et al, 2016a,b)
At times partners referred to the Overcoming Multiple Sclerosis (OMS) programme of lifestyle modification to which their partner/they subscribe and to the residential LEI as “the retreat.”
Summary
Being in an intimate relationship with a person with multiple sclerosis (MS) may have a substantial impact on the partner’s quality of life. Partners of people newly diagnosed with MS in particular may not be in “hands-on” caring roles but may recognize a potential future change to their role, leading to a sense of uncertainty and a disruption to the identity they had taken for granted, from that of partner to that described as an anticipatory carer (Strickland et al, 2015) Partners of those with any chronic condition may experience a sense of worry about the person’s well-being, their relationship and the future (Cheung and Hocking, 2004) and the partner’s quality of life may be significantly affected (Figved et al, 2007; O’Connor and McCabe, 2011). Those providing care may need to confront having to make significant changes to their working lives, may experience an impact on their personal and social lives (Bayen et al, 2015), and may have to adjust their living arrangements and other practical aspects of life (Strickland et al, 2015)
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