Self-management support for people with Multiple Sclerosis

Abstract

Background
Self-management programmes help people with long term conditions, such as Multiple Sclerosis (MS), manage symptoms, and contain utilization of health-care resources. However, the optimum level and type of support for people with MS (PwMS) to self-manage effectively is unknown. The research in this thesis set out to explore current self-management provision for PwMS, the experiences and perceptions of self-management support for PwMS from service user and provider perspectives, and to propose a best practice model of self-management support for PwMS.
Methods
Following a scoping review of self-management programmes and self-management experiences of PwMS reported in the literature, a field study involving focus group interviews with health professionals providing self-management support for PwMS in three different services, and observation of those support services in action, was undertaken. Semi-structured interviews with eight PwMS receiving support from the three services explored their perceptions and experiences. Thematic analysis and synthesis of all findings informed a new ‘best practice’ model of support for PwMS to self-manage. Findings
The scoping review identified that published self-management programmes for PwMS focused mostly on fatigue management, interventions based on cognitive behavioural therapy/social cognitive theory to increase self-efficacy,
and educational programmes, and insights into perceptions and experiences of self-management from the perspective of PwMS and health professionals were limited. The field study identified two important categories, the service and self-management provision, and themes of diversity of care, physical activities, interactions with others, and self-management. Themes identified from the interviews with PwMS were MS journey, MS services, and self-management. A model of best practice was created from synthesis and triangulation of all data from the review and empirical studies.
Conclusion
A novel, comprehensive and holistic model of self-management support for MS has been proposed, which needs further refinement and co-production with key stakeholders prior to being tested for feasibility and acceptability.