Development and evaluation of a digital mental health intervention for people with Motor Neurone Disease and their caregivers.

Abstract

Motor neurone disease (MND) is a neurodegenerative disease which results in declining physical function and has a very poor prognosis. It causes progressive muscle weakness in the limbs, difficulties communicating, difficulties with swallowing and eating, breathlessness as well as other sensory and cognitive symptoms. People with MND and caregivers can experience high levels of psychological distress and burden. Psychological support can help improve quality of life, however research evidence for psychological interventions to support people with MND and caregivers is sparse and more research is urgently needed. The overall aim of this thesis was to develop and explore the use of a digital intervention for psychological support in MND.
The intervention was developed using the person-based approach. A qualitative interview study was conducted to explore the emotions experienced by people with MND and their caregivers and to identify what impacts emotional distress and wellbeing. Findings presented the different triggers of emotional distress and suggested that any intervention needs to focus on hope, control, and compassion as these factors are important for wellbeing. A systematic review and qualitative meta-synthesis highlighted the experiences, benefits, and challenges with psychological interventions for neurodegenerative diseases. The review concluded that people with neurodegenerative diseases and caregivers experience wide-ranging benefits from psychological interventions including changes in insight, perspective, self-efficacy, emotions, and relationships. However, burden-reducing adaptations and sensitive tailoring to the specific disease context are required to improve intervention acceptability and engagement. Findings from these two studies were used to develop a digital mental health intervention for MND titled ‘Coping And Living well with MND’ (CALM). Two studies were conducted to explore experiences of using the intervention. Findings suggested that people with MND and caregivers found the intervention useful for developing a positive outlook and regaining a sense of control. The importance of intervention accessibility and flexibility for developing acceptable and engaging interventions for MND was emphasized.

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Identifiers

ORCID for Cathryn Lisa Pinto: orcid.org/0000-0001-7607-7192

ORCID for Laura Dennison: orcid.org/0000-0003-0122-6610

ORCID for Adam Geraghty: orcid.org/0000-0001-7984-8351

ORCID for Lucy Yardley: orcid.org/0000-0002-3853-883X

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