Fears for the future: A qualitative exploration of the experiences of individuals living with multiple sclerosis, and its impact upon the family from the perspective of the person with MS

Objectives Notorious for its unpredictable nature, Multiple sclerosis (MS) can have a profound impact on all areas of a person's life, as well as the lives of their family. The aim of this qualitative study was to develop an in-depth understanding of the experiences of individuals living with MS and its impact upon the family system from the perspective of the person with M. Methods Qualitative data were collected through semi-structured interviews conducted with 14 people living with MS (pwMS). Interviews lasted for approx. 1 hr, were digitally recorded and transcribed verbatim. Anonymized data were then analysed using thematic analysis (Braun & Clarke, 2006, Qualitative Research in Psychology, 3, 77). Results The themes identified within participant narratives reflected the turbulent emotions experienced by pwMS after diagnosis and the impact upon their family. Three key themes were identified with six subthemes. The central themes were feeling let down by health care, fears for the future, and finding a way forward. Fears about loss of autonomy and independence characterized the narratives that notably focussed upon impact on the self, despite the study emphasis. Discussions of suicide also featured. Conclusions The data demonstrate the psychosocial impact of living with MS as life-changing, encompassing traumatic losses and adaptation that was ongoing. The findings highlight the important role of health professionals and the dynamic impact of illness identity and engulfment. Opportunities to improve patient care by acknowledging the emotional impact of MS are discussed. Targeted and timely interventions to enhance psychological well-being, and areas for future research are considered.