Motoneuron diseases: impact on health professionals

Published: April 3 2025
Abstract Views: 0
PDF: 0
Publisher's note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

Authors

The approach to patients affected by motor neuron disease (MND) and their caregivers requires specific training for the care-team. In fact, the progression of the disease, with the decline of physical - and sometimes cognitive - function, the increasing difficulties in speaking, breathing, and swallowing and the need of invasive choices, as the artificial nutrition and tracheostomy, constitute a challenge for the health professionals, often generating distress. For this reason, their cohesion and sharing abilities are fundamental. Psychologist assumes a strategic role in supporting and facilitating the analysis of clinical cases and of the team's intra/interpersonal dynamics. For this aim, he/she needs specific training and instruments. We here present a semi-structured interview - the Motor Neuron Disease-Psychological Interview (MoNeDi-Pl)which may guide in the psychological assessment of patients affected by MNDs and their caregivers. It can also be a handy reference tool for other members of the healthcare team providing necessary information about the patient and caregiver in order to optimize clinical decision making about which health interventions to apply.

Altmetrics

Downloads

Download data is not yet available.

Citations

1) Dal Bello - Haas V, Florence JM Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neuron disease (Review). 2013; The Cochrane Collaboration® 5: 1-34.
2) Chiò A, Mora G, Calvo A, Mazzini L, Bottacchi E, Mutani R Epidemiology of ALS in Italy-A 10-years prospective population-based study. Neurology 2009; 72: 725-731.
3) Pupillo E, Messina P, Logroscino G, Beghi E, and the SLALOM Group. Long-term survival in amyotrophic lateral sclerosis: a population-base study. Ann Neurol 2014; 75: 287-97.
4) Pagnini F. Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: a review. Int J of Psychol 2012; 1-12 5) King SJ, Duke MM, O'Connor BA (2009) Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): decisionmaking about 'ongoing change and adaptation'. J Clin Nurs 2009; 18: 745-754.
6) Aoun SM, Bentley B, Funk L, Toye C, Grande G, Stajduhar KJ. A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions. Palliative medicine 2012; 25(5): 437-446.
7) Heritier Barras AC, Adler D, lancu Ferfoglia R, Ricou B, Gasche Y, Leuchter I et al. Is tracheostomy still an option in amyotrophic lateral sclerosis? Reflections of a multidisciplinary work group. Swiss Med Wkly 2013; 7(143): w13830.
8) Ando H, Williams C, Angus RM, Thornton EW, Chakrabarti B, Cousins R et al. Why don't they accept non-invasive ventilation?: Insight into the interpersonal perspectives of patients with motor neurone disease. Br J Health Psychol 2014, 1-19.
9) Vianello A, Arcaro G, Palmieri A, Ermani M, Braccioni F, Gallan D, Soraru G, Pegoraro E. Survival and quality of life after tracheostomy for acute respiratory failure in patients with amyotrophic lateral sclerosis. J Crit Care 2011; 26(3): 329.e7-14 10) Veronese S, Valle A, Chiò A, Calvo A, Oliver D. The last months of life of people with amyotrophic lateral sclerosis in mechanical invasive ventilation: a qualitative study. Amyotroph Lateral Scler Frontotemporal Degener 2014; 15(7-8): 499-504.
11) Van den Berg JP, Kalmijn S, Lindeman E, Veldink JH, de Visser M, Van der Graaff MM et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 2005; 65(8): 1264-7. 12) Peters M, Jenkinson C, Doll H, Playford ED, Fitzpatrick R. Carer quality of life and experiences of health services: a cross-sectional survey across three neurological conditions. Health and Quality of Life Outcomes 2013; 11: 103.
13) Gorden Raymond. Basic Interviewing Skills. Itasca, IL: F. E. Peacock, 1992.
14) Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio' A, Van Damme P, Hardiman O et al. EFNS guidelines on the clinical management of Amyotrophic Lateral Sclerosis (MALS) - revised report of an EFNS task force. European J Neurology 2012; 19: 360-75. 15) Lamb C, Peden A. Understanding the experience of living with spinal muscular atrophy: a qualitative description. J Neurosci Nurs 2008; 40(4): 250-6.
16) O'Brien MR, Whitehead B, Jack BA, Mitchell JD. The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers a qualitative study. Disabil Rehabil 2012; 34(3): 247-56.
17) Sakellariou D, Boniface G, Brown P. Experiences of living with motor neurone disease: a review of qualitative research. Disabil Rehabil 2013; 35(21): 1765-73.

How to Cite



Motoneuron diseases: impact on health professionals. (2025). Giornale Italiano Di Medicina Del Lavoro Ed Ergonomia, 38(2), 69-78. https://doi.org/10.4081/gimle.654

Most read articles by the same author(s)