Focus groups: the lived experience of participants with multiple sclerosis

Multiple sclerosis (MS) is a chronic disease affecting young adults. The presence of the sometimes-invisible symptoms (loss of vision, fatigue, incontinence) and the episodic nature and uncertainty of symptoms can create a constant sense of vigilance or support the use of denial. Indeed, family, friends, and even nursing support may be elusive, leaving one feeling lonely, frightened, and insecure. The purposes of this research were to investigate the lived experiences of people with MS and examine their needs from their perspectives. Two focus groups included 4 men diagnosed with MS from 2 to 15 years and 6 women diagnosed with MS from 1.5 to 15 years. Four themes were identified. The first theme resonated around feelings that "nobody listened." The second theme, symptom devastation, described the overwhelming presence of symptoms and the difficulty they caused. The third theme was "picking and choosing," or making choices to maintain some control. "Fight your own fight" with self-advocacy and taking charge was the final theme. Even though MS continuously caused challenges and changes interfering with goals, participants described creative solutions. They learned to deal with the denial, refocus their priorities, plan their activities, and choose carefully. They described a litany of being unheard, unimportant, and confused, which led to feelings of dejection, desperation, and depression. Their most poignant need was someone to listen and teach since they identified knowledge as power. The data gathered contribute to knowledge and understanding of people living with MS. Findings support nursing interventions that empower and teach self-management techniques.