"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.
Stefan Tino KulnikLucinda HollinsheadFiona JonesPublished in: Disability and rehabilitation (2018)
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.