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COPING STRATEGIES AND IMPROVING QUALITY OF LIFE FOR INDIVIDUALS WITH DUCHENNE MUSCULAR DYSTROPHY. Justyna Minda
Purpose: The purpose of this review is to evaluate coping strategies and methods to improve quality of life (QOL) of the adolescents diagnosed with Duchenne Muscular Dystrophy (DMD) and their caregivers. Methods: The past decade of literature was searched through MEDLINE, HealthSTAR, CINAHL and PsycINFO databases using Duchenne Muscular Dystrophy, physiotherapy, quality of life, coping strategies, ambulation, rehabilitation, life satisfaction, psychosocial adjustment, respiratory complications as key words. Results: A number of psychometric instruments attempt to measure life satisfaction for the adolescents diagnosed with DMD and their parents. Reviewed case studies identify a continuum of events experienced by this population and their caregivers. Both the patient and family develop coping strategies in response to this adversity and undergo psychological adaptation to losses associated with the progressive disability. Intervention by the health care professionals to reduce parental stress targets individuals with poor coping skills. Continuous communication among the health care team as well as early genetic counseling make the treatment programs successful for this population. Physical therapy plays a very important role in promoting ambulation, maintaining the level of activities of daily living, and respiratory function. QOL in these individuals can be significantly improved by prolonging their functional abilities and increasing their independence. Conclusion: This review provides an outline of various coping techniques used to minimize stress resulting from dealing with the progressive life-threatening illness and management program aspects directed at improving the QOL of these individuals. Clinical relevance: The review presented discusses some of the issues that affect quality of health care services delivered to children with DMD and their families.