Silver Linings: The Experience of Hope in Dyads with Motor Neuron Disease. An Explorative Study

Amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (AMP), collectively known as motor neuron disease (MND), are rapidly evolving fatal neurodegenerative diseases. There is no proven curative treatment. MND causes progressive muscle weakness and stiffness, limited mobility, slurred speech, difficulty swallowing and possibly respiratory problems. Most patients with MND die from respiratory failure. The median survival time from the onset of symptoms is three years. Being diagnosed with MND naturally leads to an existential shock in patients and their caregivers, forcing them to reassess their lives. Psychological reactions to the diagnosis can range from heartache and anger to the desire for hasty death. To date, the results on the prevalence of psychological problems are inconsistent, but it would seem safe to conclude that only a minority of patients suffer from clinical depression and anxiety, and that most people with MND while having problems end of life find a way to cope with the diagnosis and demonstrate psychological resilience. In this context, the feeling of hope can play a role, as shown by patients with other terminal illnesses. Herth defined hope as "an inner power which facilitates the transcendence of the current situation and the movement towards a new consciousness and an enrichment of being". In fact, hope has been identified as a central need for terminally ill patients and their caregivers. To date, research in MND on the theme of hope is mostly limited to the perspective of patients. Some studies on hope in MND have been conducted, confirming the relevance of the concept and the need for healthcare professionals to take the time to explore approaches that promote hope in their patients. Deepening our understanding of hope in dyads with MND could help enrich communication between patients, caregivers and professionals, and help improve supportive care as in other terminal illnesses.

Author(s): Sandra De Morée1, Ellen M Smets, Leonie NC Visser, Reinout O Van Vliet, Esther T Kruitwagen-van Reenen, Hepke F Grupstra, Sotice Pieters, Marianne De Visser, Hanneke C De Haes, Frans Nollet and Anita Beelen

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