Needs assessment of persons with multiple sclerosis and significant others: using the literature review and focus groups for preliminary survey questionnaire development.

The purpose of this study was to conduct focus group interviews to obtain information for development of a needs assessment questionnaire. Four focus groups were conducted with 10 people with multiple sclerosis (MS) and five significant others. A facilitator from the learning services department at the hospital conducted the interviews guided by questions developed by the researcher. The focus group interviews were audiotaped and transcribed. The researcher analyzed the transcribed interviews. Content analysis was used to analyze the transcribed data creating categories from key words and phrases as they appeared. The findings were grouped by themes. The results highlighted the participants' experiences and needs regarding physical changes; sources of assistance; unmet needs; psychological, employment, leisure, and informational needs. A comparison of themes developed from the focus groups and in the literature captured categories for questionnaire development. One new theme, leisure, was not found in the literature and was incorporated based on the findings of this study. The final categories for questionnaire development were: physical, health, psychological, financial, employment/meaningful daytime activity and leisure, accessibility and information. A survey questionnaire was developed from the focus group data using the phraseology of the participants.