A mixed methods investigation of coping, mood and quality of life in adults with Motor Neurone Disease (MND) and their carers

Abstract

Background - Insidious in its onset and development, the clinical hallmark for Motor Neurone Disease (MND) is progressive muscle weakness throughout the body without sensory disturbance (MND Association, 2018). The whole range of daily living activities become severely compromised, creating a need for healthcare and dependence on others. MND is a palliative condition so improving Quality of Life (QOL) is the main aim and focus of treatment. Research has suggested coping and mood may contribute to the QOL. Quantitative research suggests QOL and mood are stable across the disease progression whereas qualitative research suggests a different picture – one of change, burden and loss. Research is unclear and currently, there appears to be no cross-sectional research which examines QOL, mood and coping in both patients and carers.

Method – A sequential mixed methods design was used. Fifty patient-carer participants completed a battery of questionnaires to examine QOL, coping style and mood. ANOVAs were used to analyse the questionnaire data. Thematic analysis was used to analyse the six semi structured interviews conducted.
Results – Quantitative findings suggest Self-sufficient coping appears to be endorsed more than other coping styles. Patient and carers individual coping styles may influence their QOL. Conversely patient and carer coping style does not appear to influence mood including anxiety and depression. Three patient themes (multiple loss/support/adjustment & acceptance) and three carer themes (roles & responsibilities/loss/resilience) emerged.

Conclusions - Living with MND is not characterised by reaction and passivity, but rather, people were proactive in their approaches and generally positive in describing their lives with MND. However, it is important to recognise that, whilst some people framed their discussion of MND in regard of illness acceptance, others expressed denial of some of the consequences of MND. Living with or caring for an individual with MND is a mobile and changeable process that comes with a whole host of emotional and practical experiences. It is possible that different coping styles are needed at different points of the illness trajectory.

Date of Award	Sept 2019
Original language	English
Awarding Institution	Teesside University
Supervisor	Alan Robert Bowman (Supervisor)