How do people with multiple sclerosis who have walking difficulties perceive participation? A qualitative analysis

ObjectiveParticipation plays a pivotal role in rehabilitation for people with multiple sclerosis. In clinical practice, the International Classification of Functioning, Disability and Health serves as a basis for characterizing participation. However, this framework lacks the subjective perception of participation. This study examines the perceived participation of people with multiple sclerosis and gait impairment through a sense of connection, efficacy, and meaning.DesignQualitative research design with focus group and individual interviews.SettingParticipants were interviewed using an online conference tool.ParticipantsTranscripts from four online focus group interviews with people with multiple sclerosis and gait impairment (4-6 participants each, totaling N = 19, aged 33 to 76, with 12 females) and from 12 individual interviews with participants from these focus groups were analyzed.InterventionNone.Main measuresTwo researchers coded transcripts using qualitative content analysis by Kuckartz.ResultsA sense of connection was about common activities, a sense of inclusion, sameness, familiarity, and contributing to a social system. Experiences of exclusion, otherness, and foreignness were reported. A sense of efficacy ranged from a sense of competence, influence, and independence to a sense of dependence, a lack of spontaneity, and helplessness, leading to refraining from activities. Meaningful activities, sensual experience, a sense of purpose, identity, and equality were related to a sense of meaning.ConclusionsPerceived participation goes beyond the ability of being involved in life situations. Clinicians following a patient-centered approach can incorporate the presented perspective of people with multiple sclerosis and gait impairment on participation into their clinical action.