Maternal distress related to other disciplines

Gaps in Literature. Muscular Dystrophy is a very time-consuming disease for the child and the mother. The experiences, adjustment skills, and coping capabilities should be shared for other mothers to feel empowered. “Studies based on coping skills of parents whose children have disabilities, although scant, add valuable information to the research literature,” (Webb, 2005, p. 386). If there were more research on this topic, mothers who are currently struggling could perhaps be inspired to better their situation. 

One recommendation for further research should include adaptations by the child and family to the diagnosis of a chronic disease across the lifespan. Most of the articles focused on the effects and adaptations of the family in the immediate stage of diagnosis and soon after. If we knew more about the adaptations made over a long period of time, it would enable caregivers to plan for developmentally appropriate support as the patient changes over time (Mussatto, 2006). In addition, there should be tools to identify families that are at risk for poor adaptation/resilience. If families do not have access to necessary resources, they could struggle and be at risk for being in an even worse situation (Brown et al., 2008). 

Brown et al. (2008) included an entire table (Table II) dedicated to the gaps in research and questions to be addressed. The biggest gap in research seems to be during the adaptation phase. At what point in the child’s life does being a single parent matter post? How does adaptation for the single parent change over time? Are there protective factors enhancing single parenting? Negative factors? And culture. The articles seemed to have sampled a homogenous population. Would the results be different if other cultures were sampled? (Brown et al., 2008) 

As one can tell, there are still many questions to be asked and research to be completed. Mothers who have children with muscular dystrophy are a very fragile population. Understanding the lived experiences of these women can help practitioners and other women in the same situation reach out to offer help and to empower mothers to do the same