Multiple sclerosis (MS) frequently is diagnosed in young adults. Coping with symptoms of MS is challenging not only for the person with the disease, but also for his or her spouse.
The well spouse often assumes the caregiving role. The purpose of this qualitative research was to investigate the experiences of persons whose spouses have MS. Twelve people participated in a 2-hour focus group: 8 men and 4 women. The husbands were, on average, 50 years old, and the wives averaged 55 years old.
The length of time since diagnosis ranged from 2 to 11 years for the husbands and from 3 to 13 years for the wives. The focus group discussions were audiotaped and transcribed verbatim.
Participants talked freely. Four major themes emerged: caregiver roles, need for information, relationship changes, and barriers. Men attempted to protect their wives’ energy, intervening for them. Wives encouraged independence in their husbands. Spouses need information about MS, complementary interventions, and support.
They want increased public awareness of invisible symptoms and awareness in the workplace of continuing capabilities of persons with MS. Role reversals were challenging for the women who felt that “MS is the third person in a marriage.” Spouses need help to maintain appropriate boundaries. Limitations of the study include the small, economically homogeneous sample and the single encounter with the subjects. A longitudinal intervention study is needed.