Relationships between multiple sclerosis patients and their intimate partners were enhanced when the couple worked together to make lifestyle changes, and to develop skills to improve communication, a study shows.
The study, “On the path together: Experiences of partners of people with multiple sclerosis of the impact of lifestyle modification on their relationship,” was published in the journal Health and Social Care.
People with multiple sclerosis (MS) experience many physical and mental challenges. Further, the unpredictability of the clinical course of the disease can make navigating intimate relationships difficult.
While reports suggest that couples dealing with MS have positive outcomes based on the challenge of facing adversity together, partners of people with MS can experience anxiety, fear, and uncertainty about the diagnosis. They also face challenges with the changes in their relationship roles, as a partner and caregiver.
With declines in the health and well-being of a person with MS, a partner’s physical and mental health-related Quality of Life (HRQOL) also can deteriorate. This can lead to negative outcomes for the couple.
There is growing evidence linking changes in lifestyle-related risk factors to improved physical and mental health outcomes.
Studies have shown that MS patients who attended intensive workshops teaching evidence-based lifestyle interventions had improved HRQOL, reduced relapse rates, and stabilized disability as determined by the Multiple Sclerosis Impact Scale Physical Component (MSIS‐20).
However, the impact of such lifestyle interventions on the partners of MS patients, and their relationship, has not been evaluated. This prompted researchers to interview partners of a group of MS patients who attended intensive lifestyle modification workshops.
The study was guided by the Heidegger’s interpretive phenomenology, a philosophy that explores human life experiences in the context of a person’s environment.
Researchers interviewed 21 partners of MS patients who had attended lifestyle workshops between 2002 and 2016. The participants were identified in an existing research dataset — the Health Outcomes and Lifestyle In a Sample of people with MS (HOLISM). The interviews were conducted by telephone or Skype by two specialist medical practitioners.
Participants lived in Australia, New Zealand, the U.K., and Europe. Among them, 71% were male, 57% were ages 50 or older, and 52% had been in a relationship for more than 20 years. In addition, 52% of the participants had attended the workshop with their MS partner. All relationships were heterosexual.
The lifestyle interventions included changes to diet — to a plant‐based whole food diet, with ultra‐low saturated fat — and regular vigorous exercise for 30 minutes. Participants also employed stress reduction, through meditation or other stress reduction techniques, and sun exposure for vitamin D, or vitamin D supplementation. Smoking cessation also was included in the lifestyle changes.
Results identified three main themes regarding the partners’ perspectives on the impact that MS and lifestyle modification had on their relationship as a couple: providing support, remaining connected, and togetherness.
On the first theme of providing support, partners of MS patients gave their support in both practical and emotional ways. For instance, the partners encouraged physical endeavors to improve the health of patients.
“Making dietary changes along with the person was often the most tangible support they could provide, and partners found making these changes was a way of nurturing their relationship,” the researchers said.
Some partners reported difficulties in finding a balance between providing support in an acceptable way, while still encouraging the independence of their spouse with MS. Some felt they struggled to provide support in a way that was beneficial in the longer term.
Remaining connected — the second theme identified — reflected how partners experienced difficulties in maintaining their relationships. According to the team, understanding the emotions, moods, and behaviors of those with MS required new skills from the partners, and the development of better communication between the couple.
“Some partners expressed difficulties understanding and responding to emotional needs,” the researchers said. “They struggled to determine from where the emotions were coming, whether there were reasons related to the illness or related to another cause.”
Interestingly, partners who attended the lifestyle workshops described improvements in their communication skills, and learning new techniques to openly discuss worries, frustrations, and symptoms.
The final theme — togetherness — was found to be a strong positive topic. The most positive aspects arose by making decisions together regarding lifestyle changes. The teamwork between partners and MS patients was found to be key when undergoing major lifestyle changes.
For some couples, exercising together to improve physical fitness led to new common experiences. According to the researchers, working together as a team was seen as helping to ensure the longevity of the relationship by strengthening their bonds.
Overall, the team concluded that “for people with MS who undertake lifestyle modification, benefits may be experienced by the partner and the couple. Benefits are obtained through making major changes together, working with unity of purpose towards goals, improved communication, and a resultant sense of closeness and togetherness.”
The researchers also suggested that “clinicians working with couples with MS should consider the potential benefits of positive lifestyle modification to couples.”