Understanding MS Burden, Support Needs Can Challenge Couples

Differences are evident in the perceived frequency of expressions of support needs and disease burden between people with  multiple sclerosis (MS) and their life partners, a Swiss study found.

People without MS responded in a survey to feeling their partners’ communication about these issues was more frequent than the patients themselves felt, leading its researchers to conclude “that there is no in-depth understanding about the communication of stress.”

Findings also indicated “high levels” of anxiety and depression in both partners, and supported a link between difficulties in communicating urgent needs or problems — what the researchers called “stress communication” — to anxiety and depression among patients.

“There is a need for clinical practice to improve stress communication within couples, as this is likely to optimize couples’ psychosocial situations in terms of depression and anxiety, as well as their partnership satisfaction,” the researchers wrote.

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The study, “Psychosocial Impact of Multiple Sclerosis on Couples: Relationship Between Anxiety, Depression, and Stress Communication of Both Partners,” was published in the Journal of Primary Care and Community Health.

MS affects both those living with the disease and their loves ones: family, friends, and partners. Both MS patients and their partners can experience stress related to the uncertainties of this disease and life changes that can include intimacy challenges,  potentially leading to depression and anxiety.

Studies have shown that open communication between couples is key to coping with a chronic illness, but excessive stress can cause such communication to deteriorate.

Uncertainties of MS cause of anxiety among partners

Researchers at the Institute of Nursing, Zurich University of Applied Sciences, used a questionnaire to better understand the psychological impacts of MS on couples living in Switzerland, as well as on their communication status. Their ultimate intent is to use the information gained to develop an intervention that could help patients and their life partners in coping with MS.

A total of 462 couples, consisting of MS patients (mean age of 54, 55.6% women) and their partners (mean age, 54.3), were included in the current analysis. This was part of a larger survey-based study on the situation and needs of people with MS and those of one family member.

Patients’ disease duration ranged from less than a year to 58 years, and partners indicated they had been providing support for the same range of time. Most patients (65.2%) had no to moderate functional limitations, rarely needing assistance, even if a majority of this group (37.7%) were no longer able to work.

Borderline or conspicuous anxiety was evident in 34.2% of patients and 34% of partners and depression in 31.4% of patients and 20.2% of partners, as assessed with the Hospital Anxiety and Depression Scale.

“The course of the disease is difficult to predict due to its heterogeneity,” the researchers wrote. “For both partners in a couple, this uncertainty can trigger psychosocial problems such as anxiety and depression.”

People with MS and their partners also reported how often they communicated to each other their sense of burden and support needs.

While no significant differences were seen in terms of how often they communicated a sense of burden, patients reported expressing their support needs more often than partners communicated their own.

This could be due to disease-related limitations or “a sign of dysfunctional support behavior of the life partners (eg, protective buffering/overprotection),” the researchers wrote.

More frequent stress communication by MS patients was significantly associated with lower levels of anxiety and depression, while no such associations were detected for life partners.

In most cases, the person without MS also responded to questions about their perception of a partner’s stress communication. Responses showed that life partners thought patients communicated burden and support needs significantly more often than the patients themselves felt they were communicating.

Specifically, 17.8% of MS patients felt they were expressing burden often or very often, compared with 36.1% of their partners. Similarly, 25.3% of patients reported frequently communicating their support needs, while 43.6% of their partners perceived such communication to be frequent.

Additional analyses showed that when an MS patient communicates needed support, their partner notices it with a similar frequency, but they also perceive that the person with MS has expressed a sense of burden.

These findings suggest that the partner might not be able to distinguish between types of stress communication from a patient. “In-depth understanding about the communication of stress” is lacking, the team wrote, and a potential also existed “that clear messages were not sent.”

Partners who more frequently express to the person with MS their own feelings of burden or support needs are also more likely to perceive such feelings or needs being voiced by their MS partner than those who are less likely to often engage in such communication.

Results highlight “the presence of depression and anxiety, as well as dysfunctional communication patterns in both partners with MS and their life partners,” the researchers wrote.

“A more frequently used stress communication and the ability to properly perceive and decode the expressions of burden and the need for support within the couples lead to a better control of the stressors, and a decrease in the feelings of anxiety and depression,” they added.

As such, “nursing interventions to improve the stress communication within couples can support partners’ individual well-being by reducing the levels of depression and anxiety as well as improving the overall satisfaction with the partnership,” the team concluded.