Background
People with multiple sclerosis (MS) have varied experiences and approaches to self‐management. This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research.
Methods
A meta‐synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO. We incorporated feedback from team members with MS as expert patient knowledge‐users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease.
Results
Of 1680 unique articles, 77 met the inclusion criteria. We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS. These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health‐care sector; and work, social and family life).
Conclusion
The majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge. Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning.
Transparency is important for liberal democracies; however, the value of transparency is difficult to articulate. In this article we articulate transparency as an instrumental value for providing what we call ensurance and assurance to liberal democratic citizens. Ensurance refers to the property of liberal democracies which prevents it from sliding into authoritarianism and assurance is the property whereby citizens are assured that ensurance exists. Looking at the rise of bulk data collection and use afforded by information communication technologies, this paper focuses on the way that technologies disrupt relations between the state and its citizens, and suggests Value Sensitive Design as a methodology to protect key aspects of liberal democracies.Bulk data collection makes the achieving of ensurance and assurance more difficult due to two types of opacity which arise as a result of the practice: technical opacity-the difficulty for citizens to understand the technology behind bulk data collection; and, algorithmic opacity-opacity which results from properties inherent to algorithms which guide the collection and processing of bulk data. Design requirements will be suggested to respond to the disruptions caused by ICTs between liberal democracies and their citizens which threaten the necessary value for liberal democracies of representativeness.
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