| The purpose of this study is to examine coping strategies of parents of sons with the dual disabilities of Duchenne/Becker muscular dystrophy and specific learning disabilities. By conducting a subjective qualitative study, I combine the relationship of phenomena (ontology) with the people (epistemology) I study to obtain rich descriptions of lived experiences.; Specifically, I utilized semi-structured open-ended interviews with 15 families to gather the data. I began by developing the research questions: (1) How do parents cope when their children are diagnosed with the dual disabilities of Duchenne/Becker muscular dystrophy (DMD/BMD) and specific learning disabilities? (2) What are the strategies parents use to improve their child's quality of life, academic performance, and social functioning?; Then I composed interview questions that enabled me to gather that information. To obtain study participants, I posted requests for parent volunteers on the Parent Project Muscular Dystrophy (PPMD) and the DMD Forum Websites, made an appeal for volunteers at the 2001 PPMD conference, and networked with parents. The final selection of participants was based on age and number of sons in the family, cultural and SES diversity, and geographic location. I analyzed the transcribed interview data using the constant-comparative method of grounded theory.; This study opens a window to recognizing parents as sources of expert and practical advice. When ordinary parents find themselves in extraordinary circumstances, they become extraordinary. These parents seek information about DMD/BMD and learning disabilities from personal research, support groups, medical professionals, and the Internet, which they willingly share to encourage, support, and empower other parents. They advocate to be heard, to help search for a cure, and to be proactive in their sons' lives and education. |
