Understanding what is important for women who live with multiple sclerosis

In this pilot-project eight women with multiple sclerosis (MS), four Continence Nurse Advisers (CNAs) and one researcher formed a participatory action research (PAR) group. Ten group sessions were held in 1997. The CNAs found that 80 of their referrals for continence management were women with MS and they wanted to explore the way in which women manage their incontinence. Although the group was brought together to discuss incontinence, other emergent themes were raised by the women. These themes were: women's ad hoc experience with community services, their problems concerning access to toilets for the disabled, concern with health professionals' lack of knowledge about MS, their formidable experiences of hospitalisation and respite care admissions, their individual efforts in maintaining wellness in the context of chronic illness and the effect of MS on sexual relationships.