The need to consider ‘temporality’ in person-centered care of people with motor neurone disease

Harris, Denise, Jack, Kirsten and Wibberley, Christopher ORCID: https://orcid.org/0000-0002-2037-6588 (2023) The need to consider ‘temporality’ in person-centered care of people with motor neurone disease. Journal of Evaluation in Clinical Practice, 29 (5). pp. 802-807. ISSN 1356-1294

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Abstract

Aims and objectives: The overall aim 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 a group of four rare, devastating neurodegenerative terminal diseases of middle/later life. Previously, we have acknowledged the importance of different time-periods in the trajectory of MND as an illness, for example, during the diagnosis stage through to 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. It is important that professionals continue to provide holistic care throughout the illness trajectory and the aim of this paper is to explore past research about caring for someone with MND in relation to 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 has a significant impact on 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 is providing person-centred care based on individuality of the person, 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 experiencing life in crisis and suffering towards the end-of-life.