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Little to no research has evaluated staff training and its effects on the well-being of people with MND. The aim of this study was to assess how educating multi-disciplinary staff about psychosocial well-being in MND can change approaches to working with people with MND.
Multi-disciplinary staff attended a half-day workshop to receive training on psychosocial well-being in people with MND and to discuss QoL issues using the World Café approach. Prior to the workshop and 2 weeks post-workshop, staff completed a questionnaire on their knowledge of this topic. A selection of staff completed a follow-up interview 2 months later to assess changes in their practice.
19 staff, including dieticians and occupational therapists, attended the workshop and completed the pre-workshop questionnaire. Ten filled in the post-workshop questionnaire and were interviewed. Clinicians identified six strategies/barriers of improving communication amongst MND staff, suggesting the need for better collaborative working, raising awareness of psychological and emotional issues in MND and barriers to service access due to health inequalities, amongst others.
This workshop raised staff awareness on communicating QoL in MND. Future work needs to look into implementing this training in clinical practice and evaluate their impact on QoL in MND.
Motor Neurone Disease Association. (2018). Annual report 2017. England: MNDA.
Rocha, J. A., Reis, C., Simoes, F., Fonseca, J., & Mendes, Ribeiro J. (2005). Diagnostic investigation and multidisciplinary management in motor neuron disease. Journal of Neurology, 252(12), 1435–1447. CrossRef
Rooney, J., Byrne, S., Heverin, M., Tobin, K., Dick, A., Donaghy, C., et al. (2015). A multidisciplinary clinic approach improves survival in ALS: A comparative study of ALS in Ireland and Northern Ireland. The Journal of Neurology, Neurosurgery, and Psychiatry, 86, 496–501. CrossRef
Foley, G., O’Mahony, P., & Hardiman, O. (2007). Perceptions of quality of life in people with ALS: Effects of coping and health care. Amyotrophic Lateral Sclerosis, 8(3), 164–169. CrossRef
Pagnini, F. (2013). Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: A review. The International Journal of Psychology, 48(3), 194–205. CrossRef
Hardiman, O., van den Berg, L. H., & Kiernan, M. C. (2011). Clinical diagnosis and management of amyotrophic lateral sclerosis. Nature Reviews Neurology, 7, 639–649. CrossRef
Aoun, S. M., O’Brien, M. R., Breen, L. J., & O’Connor, M. (2018). ‘The shock of diagnosis’: Qualitative accounts from people with Motor Neuron Disease reflecting the need for more person-centred care. The Journal of the Neurological Sciences, 387, 80–84. CrossRef
Van Groenestijn, A. C., Kruitwagen-van Reenen, E. T., Visser-Meily, J. M. A., van den Berg, L. H., & Schroeder, C. D. (2016). Associations between psychological factors and health-related quality of life and global quality o life in patients with ALS: A systematic review. Health and Quality of Life, 14, 107. CrossRef
Goldstein, L. H., Atkins, L., & Leigh, P. N. (2009). Correlates of quality of life in people with motor neuron disease (MND). Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 3, 123–129.
Harris, M., Thomas, G., Thomas, M., Carafella, P., Stocks, A., Greig, J., et al. (2018). Supporting wellbeing in motor neuron disease for patients, carers, social networks, and health professionals: A scoping review and synthesis. Palliative Supportive Care, 16(2), 228–237. CrossRef
Ilse, B., Prell, T., Walther, M., Hartung, V., Pnezlin, S., Tietz, F., et al. (2015). Relationships between disease severity, social support and health-related quality of life in patients with amyotrophic lateral sclerosis. Social Indicators Research, 120(3), 871–882. CrossRef
Aoun, S. M., Chochinov, H. M., & Kristjanson, L. J. (2015). Dignity therapy for people with motor neuron disease and their family caregivers: A feasibility study. The Journal of Palliative Medicine, 18(1), 31–37. CrossRef
Diaz, J. L., Sancho, J., Barreto, P., Banuls, P., Renovell, M., & Servera, E. (2016). Effect of a short-term psychological intervention on the anxiety and depression of amyotrophic lateral sclerosis patients. Journal of Health Psychology, 21(7), 1426–1435. CrossRef
Palmieri, A., Kleinbub, J. R., Calvo, V., Soraru, G., Grasso, I., & Messina, I. (2012). Efficacy of hypnosis-based treatment in amyotrophic lateral sclerosis: A pilot study. Frontiers in Psychology, 3, 465. CrossRef
Gould, R. L., Coulson, M. C., Brown, R. G., Goldstein, L. H., Al-Chalabi, A., & Howard, R. J. (2015). Psychotherapy and pharmacotherapy interventions to reduce distress or improve well-being in people with amyotrophic lateral sclerosis: A systematic review. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 5–6, 293–302. CrossRef
Elvish, R., Burrow, S., Cawley, R., Harney, K., Pilling, M., Gregory, J., et al. (2018). ‘Getting to know me’: The second phase of a staff training progamme for supporting people with dementia in general hospitals. Dement, 17(1), 96–109. CrossRef
Spector, A., Revolta, C., & Orrell, M. (2016). The impact of staff training on staff outcomes in dementia care: A systematic review. International Journal of Geriatric Psychiatry, 31(11), 1172–1187. CrossRef
Brown, J. (2005). The World Café: Shaping our futures through conversations that matter (1st ed.). San Francisco, CA: Berrett-Koehler Publishers.
Young, C. A., Mills, R. J., Tennant, A., & on behalf of The Tonic Group. (2016). Physical and psychological influences upon quality of life in Motor Neurone Disease/ALS. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(S1), 26.
Braun, V., & Clarke, V. (2013). Successful qualitative research: A practical guide for beginners. London: Sage.
Involve, N. I. H. R. (2015). Public involvement in research: Values and principles framework. Eastleigh, UK: NIHR INVOLVE.
Aoun, S. M., Hogden, A., & Kho, L. K. (2018). “Until there is a cure, there is care”: A person-centered approach to supporting the wellbeing of people with motor neuron disease and their family carers. European Journal for Person Centered Healthcare, 6(2), 89. https://doi.org/10.5750/ejpch.v6i2.1488. CrossRef
Vibert, S. (2017). MND costs: Exploring the financial impact of motor neuron disease. England: DEMOS.
Ward, A. L., Sanjak, M., Duffy, K., et al. (2010). Power Wheelchair prescription, utilization, satisfaction, and cost for patients with amyotrophic lateral sclerosis: Preliminary data for evidence-based guidelines. Archives of Physical Medicine and Rehabilitation, 91(2), 268–272. CrossRef
Wicks, P., & Frost, J. (2008). ALS patients request more information about cognitive symptoms. European Journal of Neurology, 15(5), 497–500. CrossRef
- Communicating psychosocial well-being in motor neurone disease to staff: results from a World Café approach
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