Husbands and Wives Living With Multiple Sclerosis

Nancy Fleming Courts; Amanda N. Newton; Linda J. McNeal

Disclosures

J Neurosci Nurs. 2005;37(1):20-27. 

In This Article

Limitations and Implications

This study is limited by the small convenience sample and its single data-gathering period. The data, nevertheless, have a number of implications for nursing. First, the caregiver role was so important to these husbands and wives. The data suggest adjustment is not contingent upon length of diagnosis, so assessment needs to be ongoing. Spouses need to be assessed individually and privately, as well as with their partner. Patients and spouses need an opportunity to deal with personal issues, such as fear of divorce or difficulty deciding to stay in the marriage, in a safe environment that can reduce loneliness and facilitate adjustment. If referral to a mental health professional is indicated, nurses need to be sure that the therapist understands the issues associated with MS.

Because male caregivers tend to be protectors, nurses can be helpful in working with the couple to identify ways this role can be integrated successfully into the care plan, that is, determining when the protector role is needed and when it may become troublesome. Spouses and patients may need help to maintain personal, appropriate boundaries to avoid overprotectiveness and to preserve the independence of both the patient and the partner. Stressful lifestyles can be changed with discussion and planning, and patients can learn to accept limitations when supported by their spouses.

In addition, although the men were more cognitive than affective in describing their experiences, both husbands and wives indicated difficulties related to the diagnosis. Relationship changes, lifestyle changes, losses, and the need for information were major concerns. Information should be freely available at the time of diagnosis and throughout the illness. Resources need to be available at the physician's office, referrals made to the MSS, and appropriate Web sites identified. The opportunity for couples to ask questions and receive honest answers could help alleviate unnecessary suffering.

Barriers included difficulties in gaining access to physicians, the ignorance of the public about "invisible symptoms," and retail stores with aisles that are too narrow for a wheelchair. Physicians' nurses should return calls in a timely manner, refrain from speaking for the physician, answer questions, communicate with the physician, and then call the patient or spouse back to follow up. Nurses could offer MS education programs for friends and the general public. News releases about the "invisible symptoms" could increase public understanding of the use of parking spaces for people with disabilities and the problems of shopping from a wheelchair.

The spouses in the study expressed a need for a holistic approach to the diagnosis and alternative or complementary therapies. Music therapy, for example, can produce relaxation and change one's emotions (Guzzetta, 2005). Nurses can use mental imagery to alter expected outcomes (Schaub & Dossey, 2005). These alternative therapies also give spouses "something to do" and enable them to avoid relying solely on healthcare providers, increasing the sense of control.

Exercise programs also can be beneficial, increasing control while improving physical health (Newland, 1999). Healthy lifestyles for both patient and partner improve their quality of life. Because alternative interventions can cause side effects (Courts et al., 2004), nurses should carefully assess reponses to alternative interventions. Nurses are in a unique position to initiate discussions, explore perceptions, and provide information, support, and guidance.

Finally, patients and their spouses should have access to support groups. Nurses should determine whether patients and their spouses are using them and if the groups are beneficial. If they are unwilling to go to MSS groups, they could be encouraged and supported to arrange their own groups. Even Internet support groups could be beneficial. Indeed, friends and family often are available, and nurses could volunteer to meet with them during an initial meeting. The opportunity to express feelings and receive validation is critical so that partners can then be supporters for their spouses.

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