Living with unpredictability in Multiple Sclerosis
Creators: name: Wilkinson, Hannah RA
Publisher: name: University of Lincoln
Year: 2024
Subjects: C840 - Psychology in health &amp; medicine

description: Background: Unpredictability is identified as a major factor in Multiple Sclerosis (MS) and reported to be a “constant companion” for individuals living with MS. It is reported to be a factor of uncertainty, which is indicated to have a biopsychosocial impact on these individuals. However the impact of uncertainty is argued to diminish over time. Whereas, the lived experience of unpredictability is reported to be continual. Furthermore, unpredictability is argued to have a continual psychological effect on individuals with MS. However, unpredictability is an aspect that remains relatively unaddressed in the research. Qualitative research has been highlighted to be fundamental in exploring the individual experience of illness, providing rich detailed descriptions. In addition it has been instrumental in the development of services to meet the needs of these individuals. The significance of unpredictability in MS highlights the need for further exploration of lived experience of this aspect of the illness to support healthcare professionals and the development of services to meet the needs of these individuals.Aim: This study aimed to address the limited research examining unpredictability in MS, to develop a comprehensive understanding of how this aspect affects the lives of individuals with MS.Method: This study employed a qualitative design. Twelve participants were recruited through the MS Society, local advertisements and by a ‘snowballing’ sampling technique. All participants lived in England, had a diagnosis of MS, and were able to provide consent to participate. Individual interviews were conducted (7 face-to-face and 5 telephone interviews) using a semi-structured interview. Interviews were transcribed verbatim and analysed by the researcher using a thematic analysis (TA) approach.Results: Three main themes were derived from the analysis: 1) Challenges to meaning-making; 2) A wide picture of unpredictability; and 3) Surviving unpredictability. Each of the themes generated between two or three sub-themes. The themes told the participant’s story for living with unpredictability.Conclusion and recommendations: Unpredictability was reported to be a key factor of living with MS, yet it was challenging and difficult to understand. Participants described the wide reaching impact of unpredictability influencing them personally and socially. Pragmatic and psychological approaches were employed by participants to deal with unpredictability.The findings offer insight into the individual’s experience of living with unpredictability. It is argued the findings represent individuals who have reached a stage of acceptance with their illness and therefore may offer health professionals guidance around how to support individuals who have not been able to come to terms with the unpredictability of their illness. Furthermore, the findings highlight the wide reaching impact of unpredictability emphasising the importance of the family team. These findings may offer health professionals guidance around providing family education and support to help develop a cohesive network of support for the individual and the family experiencing the effects of unpredictability in MS.