Research Log #3 - Solutionary Project 2021

Date: Feb 18, 2021

Name: Macie Tsang
Essential Question: How do neuromuscular diseases affect a child and their family’s lives?

Three Points to Prove: #1: Neuromuscular diseases can negatively affect mental health.

#2: Neuromuscular diseases make it difficult to receive/find medical care.

#3: Neuromuscular diseases make it difficult to receive a “normal” education.

Point that this Source Proves: #1

Excerpts (These should provide insight into the Point to Prove):

Results of the experiment showed that “parents of children with Duchenne muscular dystrophy had a higher
probability of going through a major depressive episode and had significantly lower self-esteem and mastery scores
than the national control group.” (Abi Daoud)

One of the trends that they noticed and were able to predict was that “parents of males older than 13 years of age were
more likely to experience distress that interfered with life.” (Abi Daoud)

The effects on the parent’s mental health is so severe that the researchers have established that “it is incumbent on
those caring for patients with Duchenne muscular dystrophy to counsel families regarding their potential to suffer a
major depressive episode and to advise on appropriate therapy.” (Abi Daoud)

Analysis (How does this source support the Point to Prove?):

This issue from the Pediatric Neurology Journal provides an abstract from an experiment that shows the
negative effects that Duchenne muscular dystrophy has on parents. Results of the experiment revealed that “parents of
children with Duchenne muscular dystrophy had a higher probability of going through a major depressive episode and
had significantly lower self-esteem and mastery scores than the national control group.” (Abi Daoud) This proves that
compared to parents with non-afflicted children, parents with children afflicted with Duchenne muscular dystrophy
were more likely to experience mental health issues. Parents had lower mastery scores because it is difficult to focus
on a test at hand when they are worried about their son and having to care for him. Self-esteem issues are more likely
to occur in mothers, as 70% of DMD carriers are females. Mothers are meant to protect their children, and these
mothers may feel that it is their fault that the child has the disease.
The research ensured that other variables were accounted for and did not affect the experiment. The one trend
that they noticed and were able to predict was that “parents of males older than 13 years of age were more likely to
experience distress that interfered with life.” (Abi Daoud) The average life expectancy of a male with DMD is 20 to 30
years of age. This accounts for the fact that parents are more likely to experience distress that interferes with their life
when their son is older than 13 because his life span is shortening and approaching the average DMD age. Although
technology has changed over the years and some patients are able to live to be 40 years old with the use of steroids and
treatments, the older the person gets, the more parents worry that they will die.
The effects on the parent’s mental health is so severe that the researchers have established that “it is incumbent
on those caring for patients with Duchenne muscular dystrophy to counsel families regarding their potential to suffer a
major depressive episode and to advise on appropriate therapy.” (Abi Daoud) This shows that some type of influence
on the mental health of a parent of child with DMD will occur. Often times, these parents are too occupied with caring
for their child that they forget to take care of themselves and their mental state. Without appropriate care and attention,
the parent’s mental state will continue to regress until it impacts them profoundly. Resources need to be there, not only
for the children, but for the parents too.

Work Cited (correct MLA format):

Abi Daoud, Marie S, et al. “Depression in Parents of Children with Duchenne Muscular Dystrophy.” Pediatric
Neurology, vol. 31, no. 1, doi:https://doi.org/10.1016/j.pediatrneurol.2004.01.011.

This is a reputable and reliable article because it was published in ScienceDirect and it only publishes journals that
have been reviewed and verified as credible.