Coping with Neuromuscular disease and the Implications for Interventions

The lecture is based on results from three theses and about 25 scientifically articles about the plight of the patient with muscular dystrophy (MD), and the patients’ ways of coping with illness-related problems from a psychosocial perspective. MD is a group of inherited disorders characterised by muscular weakness caused by muscle wasting. Three subgroups are distinguished in our research: one group with different types of proximal MD and the other two groups characterized chiefly by distal weakness. The research was to elucidate how persons with muscular dystrophy experience their everyday life over a ten years period. The research includes four data collections with qualitative and quantitative methods. The data was selected in three different county councils in Sweden.

The persons with MD described the change from being independent to being an individual in need of assistive devices and/or personal support to manage activities of every day life. Besides muscular weakness the persons have the strain it means to have a hereditary disease. The deterioration in a decennium was mainly with regard to ambulation. The number of persons walking without assistive devices and working has almost been halved. They experienced periods of sorrow due to losses of independence, control, status and social roles and the loss of one’s identity as a healthy person. The sorrow connecting with repeated losses are in the literature designate as chronic or episodic sorrow. Also, in the lecture the patients’ illness trajectory were described by a model of Sullivan (1994) into four dimensions in order to increase the understanding of what it means to live with muscular dystrophy.

The aim of interventions is to support the patient’s appropriate ways of coping as Problem-focused coping/Searching for a solution, Fighting spirit/Struggling, Re-appraising of life values, Maintaining hope, Social comparison, Laughing and joking  and Caring about self.