Updated: Nov 18
Aims and Objectives: The overall purpose of this paper is to provide practical insight into the way that professionals caring for a person with motor neurone disease (MND) can recognise, respect and respond to that person's temporality; that is, the person that they have been, that they are now and that they will be in the future.
Background: MND is an umbrella term for four rare, devastating neurodegenerative terminal diseases of middle/later life. Previously, we have acknowledged the importance of different periods in the trajectory of MND as an illness, for example, during the diagnosis stage through to the end of life and decision‐making at that time. Living with MND can cause anxiety at all stages of the disease trajectory, especially as it can be difficult for people living with MND to communicate their desires and concerns to professionals and carers. Professionals must continue to provide holistic care throughout the illness trajectory.
This paper explores past research about caring for someone with MND and the concept of person-centred care.
Method: The paper is based on the concatenated exploration of the findings of a hermeneutic phenomenological project. Thus, this discursive paper links elements/ studies which have been published previously to develop a model of person‐centred care for people with MND which recognises and respects their temporality. Conclusions: We suggest MND significantly impacts a person's lifeworld. The proposed person‐centred care model focuses on understanding (interpreting) a person in a wider temporal frame and beyond the context of their illness. The expected collaborative outcomes are that a person is acknowledged as more than a ‘patient with MND’ and that a professional provides person‐centred care based on the person's individuality through a temporal lens. This requires a collaborative approach between the person, others and professionals. Such person‐centred care focused on individuality may prevent a person from experiencing life in crisis and suffering towards the end of life.
KEYWORDS: Heidegger, hermeneutic phenomenological method, models of care, motor neurone disease (MND), person‐centred care, temporality
Harris DA, Jack K, Wibberley C. There is a need to consider ‘temporality’ in person‐centred care of people with motor neurone disease (MND). Journal of Evaluation in Clinical Practice. 2023; 1‐6. doi:10.1111/jep.13854