Working with people living with motor neurone disease and the impact on professionals’ emotional and psychological well-being: A scoping review

Abstract

Background: Integrated multidisciplinary care is required to manage the progressive and debilitating symptoms associated with motor neurone disease. Professionals can find providing the level of care required by this population clinically and emotionally challenging. To support those working with these patients it is important to understand the experience of the entire multidisciplinary team involved and the impact of working with motor neurone disease on their emotional and psychological well-being. Aim: To identify what is known about (1) healthcare professionals’ experience of working with motor neurone disease and (2) the impact of this work on their emotional and psychological well-being. Design: Scoping review. Review protocol registered on Open Science Framework. Sources: Five electronic databases were searched in January 2023 and 2024. Grey literature and hand searches were completed. Results: Fifty-one sources published between 1990 and 2023 were included. A total of 1692 healthcare professionals are represented. Three main categories were identified: (1) The demands of providing motor neurone disease care. (2) Factors influencing professionals’ ability to provide desired levels of care. (3) The emotional impact of working with motor neurone disease. Subcategories are depicted within these. Conclusion: Positive experiences included job satisfaction, enhanced perspective and receiving gratitude, while negative implications such as stress, emotional exhaustion and burnout also featured. The demands of motor neurone disease patient care, the organisation of services and resources required to meet patient and family needs and the emotional burden for professionals involved, warrant greater recognition in clinical practice, guidelines and future research.