“I’m still me – I’m still here!” Understanding the person’s sense of self in the provision of self-management support for people with progressive neurological long-term conditions

Abstract

Self-management approaches for individuals with progressive neurological conditions will benefit from incorporating ways of recognizing, articulating, and supporting the person's sense of identity and purpose. Implications for rehabilitation Self-management approaches for people with progressive neurological conditions need to take account of individuals' wishes to contribute, connect with others, and be valued as a person. Person-centred self-management support can be realized through a broader approach than solely managing disease progression. The experiences and words of people with progressive neurological conditions can be used to inform meaningful evaluation of self-management support to drive service delivery by measuring what really matters. Rehabilitation practitioners need to adapt their conceptualisations of goal setting to account for how people with progressive neurological conditions themselves interpret "progress" and "improvement". Person-centred conversation that values who the person is can be an effective starting point for self-management interventions in people with progressive neurological conditions.

‘The care that you give to yourself’: A qualitative study exploring patients' perceptions of self-care

“…Previous studies have explored patients' perception of self-managing chronic long tern conditions, or have evaluated self-management interventions for patients with chronic long term conditions [3][4][5][6].…”

“…Many prevalent chronic illnesses, such as heart disease, diabetes, asthma and arthritis, require patients to monitor physical indicators, manage medication regimes and components of their lifestyle such as diet and exercise. There are now many published studies which have explored how patients self-manage their long term chronic conditions, or which evaluate interventions designed to aid patients to self-manage these chronic conditions [for example see [3][4][5][6] Despite this wealth of research evaluating the effectiveness of self-management interventions for long term chronic conditions, few published studies have explored patients' perceptions and understanding of 'self-care', ie not merely the management of a chronic condition, but also their perceptions of preventative and health protective activities they also engage in, or use to manage minor ailments as they develop.…”

Psychotherapie bei funktionellen neurologischen Bewegungsstörungen

“…Für Patienten sind die Auswirkungen der Symptome auf das soziale und berufliche Leben, die Regulierung von Emotionen wie Angst, Scham und Verlegenheit sowie die Bedrohung der Identität wichtig für eine wirksame Behandlung neurologischer Erkrankungen [10][11][12]. Bezogen auf funktionelle Bewegungsstörungen im Spezifischen lassen sich in Interviews wiederkehrende Themen finden, die für die Patienten zentrale Rollen spielen (▶Tab.…”

What is it like to live with a functional movement disorder? An interpretative phenomenological analysis of illness experiences from symptom onset to post‐diagnosis

“…One further means to enhance treatment is to gain insight into the patient experience of managing their condition. For example, in support of self‐management interventions, qualitative studies consistently evidence that effective long‐term management of neurological conditions involves navigating the impact of symptoms on social and occupational functioning alongside regulating emotions like fear, shame and embarrassment and threats to identity (Graham, Simmons, Stuart, & Rose, 2015; Hammond, Farrington, Kilinc, 2019; Kilinc, Erdem, Healey & Cole, 2020; Kulnik, Hollinshead, & Jones, 2019). To date, there has been one qualitative study with people with FMD (Nielsen, Buszewicz, Edwards, & Stevenson, 2019), which used thematic analysis on accounts drawn from people with FMD participating in a RCT of physiotherapy.…”