Intertwined like a double helix: A meta-synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis.

BACKGROUND: Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS. METHODS: Using the theoretical lens of personhood, we undertook a scoping review and meta-synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring. RESULTS: Of 330 articles, 49 were included in the review. We identified five themes. One of these-seeking information and support-reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes-changing identities and adapting to life with a person with MS-point to the negotiation and reconstitution of personhood for both the person with MS and the people they live with. CONCLUSION: People with MS are embedded in relational social networks of partners, family and friends, which are fundamental in the support of their personhood; the people who live with them are 'co-constituents of the patient's identity' assisting them to make sense of their world and self in times of disruption due to illness. Support services and health care professionals caring for people with MS are currently very much patient-centred; young people in particular report that their roles are elided in the health system's interaction with a parent with MS. There is a need to look beyond the person with MS and recognize the relational network of people who surround them and broaden their focus to encompass this network. PATIENT AND PUBLIC INVOLVEMENT: Our research team includes four members with MS and two members with lived experience of living or working with people with MS. A third person (not a team member) who lives with a partner with MS provided feedback on the paper.

Personalizing Medicine and Technologies to Address the Experiences and Needs of People with Multiple Sclerosis.

There is enormous variation in the manifestations of disease experienced by people with multiple sclerosis (PwMS). While this variation makes personalized medicine an attractive goal, there are many challenges to be overcome before this opportunity can be realized. Personalized medicine often focuses on targeted therapies and detailed monitoring, but we also need to recognize that there will be variation in acceptance of these approaches by different PwMS. In other words, deep personalization of medicine will encompass targeted therapy, precision monitoring, tailored to variation in personal attitudes to these transformations in health care. In order to meet the promise of personalized medicine for MS, understanding the experiences of PwMS is necessary both to aid in the uptake of personalized medicine, and to ensure that personalized approaches to monitoring disease and treatment provide a net benefit to PwMS rather than placing additional burdens and stressors on them. Here, we describe recent research that identified five experiential themes for PwMS, and then interpret these themes according to the foundations of personalized medicine to provide a road map for implementation of personalized medicine solutions for PwMS.

'It struck at the heart of who I thought I was': A meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis.

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.