Empirical Literature

Overview. There have been a number of research articles that delve into the experiences of mothers who care for their child with muscular dystrophy. The Literature Matrix (Appendix B) is an overview of eight research articles that studied the experiences and lifestyle of these women. Two research articles were literature reviews and six were experimental studies. One study used a conceptual model to guide the research, which will be presented in the theoretical section of this literature review. 

Children and families who are faced with the stress of having a child with muscular dystrophy must adapt to physical, emotional, social, and financial challenges. The increase in every-day caregiving requirements, lifestyle, the disease complexities, and family dynamics can influence long-term health outcomes (Barlow & Ellard, 2005). In addition, the financial status and interactions of the child and/or family with their environment can be severely impacted (Brown et al., 2007). Through this review of literature from the eight articles, four emerging themes became evident: the lifestyle associated with having a child with muscular dystrophy affects maternal stress and well-being; mothers experience difficulty adjusting; maternal anxiety is directly related to quality of life; and the struggles with the experience of coping. This empirical research section will use the themes to organize the literature, followed by a brief section about maternal distress relating to other disciplines, as well as the gap in the current literature. 

Lifestyle as a contributor to maternal stress and well-being. While both mothers and fathers may have worries about maintaining family function when caring for a child with muscular dystrophy, typically the mother herself is identified as the primary caregiver (Brown et al., 2008). This is described as “carrying the burden,” since the mothers are the individuals following through with doctor appointments, monitoring the child’s status, administering medications/treatments, all in addition to feeding the rest of the family and cleaning the home (Brown, et al. 2008). This places a large stressor on the mother, who may be so concerned about everyone else’s well-being, that she may not have time for her own. The literature has shown that the lifestyle of having a child with muscular dystrophy can severely impact maternal well-being (Barlow & Ellard, 2005).