Pain And Hope -The Lived Experience Of Mothers Of Children With Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy (DMD) is a lethal X-recessive hereditary muscle disease featured by progressive muscle atrophy and hypokinesia. With the increasing of age, children gradually lose the ability to walk, and eventually die of heart and lung failure at about 20 years old. There is not any effective treatment for the disease. Low social cognition of DMD, inadequate information and scarcity of social support resulting from the rarity of this disease make mothers of these patients, the primary caregivers, feel isolated and helpless when dealing with the illness and death of their children. Facing difficulties in seeking for medical treatment, the pressure of daily caring and the ethical dilemmas, it worth thinking their detailed appeals and unique lived experience in the special cultural background of China.The present study was designed to investigate the lives of mothers of pediatric DMD patients. Theoretically, we used phenomenological methods to explore their lived experiences. Participant observation and semi-structured interviews were applied to perform in-depth interviews with 17 mothers of pediatric DMD patients. After the information was collected and analyzed, it was further investigated depending on the 4 dimensions of life in the living world of the phenomenological theory. The results of the current study suggest the following conclusions:firstly, spatial experience of mothers of DMD children is characterized by struggling and restraint; secondly, the corporeal experience of mothers of DMD children is characterized by pain and relief; thirdly, the interpersonal experiences of mothers of DMD children is characterized by loneliness and gratitude; fourthly, the time experience of mothers of DMD children is characterized by suffering and expectation.The present study suggests that the lived experience of mothers of DMD children has a bipolar nature, namely a positive experience and a negative experience. Both pain and hope intertwine within their lived experience. Personal, social and cultural factors exert impact on their lived experience. In conclusion, the significance of the findings in the aspect of social work practice was thoroughly discussed in order to provide advice for social work intervention, and thus promoting the support networks for these mothers and relevant services.