Short summary

This study examines how people living with Multiple Sclerosis and their relatives understand and shape their everyday lives, manage their health and assemble care practices in the context of early-onset ageing and endeavours to live the best possible life with MS.

Rationale

Ageing plays a significant role in the etiology and incidence of many chronic conditions, including neurodegenerative diseases, and bodily and cognitive changes are often considered part of an expected or inevitable process of declining health status and ageing. Due to the slowness of decline, neurodegenerative conditions are typically diagnosed in old age. Being diagnosed with an early-onset condition, such as MS, has significant implications for the lives of the people affected. The onset of MS typically in early adulthood brings with it different impacts, challenges and outcomes compared to those encountered by other, generally older, onset populations of neuro-degenerative diseases. A diagnosis of MS may hasten personal, social, financial and lifestyle considerations many years earlier than a person may have imagined, including in relation to reproduction and family formation, workforce participation and retirement, social involvement, life aspirations, planning for financial and legal security, and advanced care (see, for example, Cahill, Connolly, & Stapleton, 2010; Frost, Grose, & Britten, 2017; Lexell, Iwarsson, & Lund, 2011; Payne & McPherson, 2010; Prunty, Sharpe, Butow, & Fulcher, 2008; Riessman, 2003). Therefore, a diagnosis of MS may challenge perceptions of ageing and an understanding of an 'age-appropriate' life course.

The trajectories of MS contribute to feelings of uncertainty around the nature and timing of symptoms, future degeneration and physical and mental functioning both in the present and into the future (Boeije, Duijnstee, Grypdonck, & Pool, 2002). This uncertainty has implications for healthcare management and care strategies (Frost et al., 2017), which are strongly influenced by social relationships with parents, siblings, one's partner, friends and health professionals (Barker, Roshan, Nadina, & Nigel, 2014; Lowden, Lee, & Ritchie, 2014; Payne & McPherson, 2010). Disease progression experienced by people with MS is characterised by a series of losses: of physical, social and cognitive functioning (Lublin et al., 2014; Westervelt, 2015), of valued roles and responsibilities (Payne & McPherson, 2010), and of independence, self-hood and identity (Barker et al., 2014). These changes also have significant implications for relatives and friends (Hughes, Locock, & Ziebland, 2013). Stigma plays a role in educational and work place settings (Cadden, Arnett, Tyry, & Cook, 2018) where there may be limited tolerance for people whose productivity may be impacted by their health. The body is central here, both in terms of the expression of symptoms and as the focus for daily activities (Lynning, Hanehøj, Karnøe Knudsen, & Skovgaard, 2017) which may shape expectations and understandings of the possibilities the future holds (Manderson & Smith-Morris, 2010). Thus, care practices and the shaping of a good life with MS are the focus of this study. To gain an in-depth understanding of people's experiences of living with MS, the study focuses particularly on the actions people take and the strategies they draw on to manage their health and healthcare in order to achieve a good life with MS. The study attends to issues of gender throughout.

Description of the cohort

Participants are women and men living with any type of Multiple Sclerosis in Denmark, aged 18 and above. 

Collaborating researchers and departments

Jeanet Lemche, PhD

Publications associated with the project

Nissen N and Lemche J (2019) Statuspapir nr. 1: Højdepunkter fra fokusgruppediskussioner