Research Log #7 - Solutionary Project 2021

Date: Mar 14, 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):

Compared to caregivers of patients with excellent health, “caregivers to patients in fair/poor health had a sixfold risk
increase of anxiety and depression” (Landfelt).

The study’s results detailed that “the loss in HRQL among DMD caregivers was similar to or greater than
published disutility estimates for patients suffering from very serious and sometimes rapidly fatal diseases,
including lung cancer and schizophrenia, systemic lupus erythematosus, and epilepsy” (Landfelt).

The study found that “between 57 and 86 % of caregivers frequently or always felt worried about the future of
their child, 26 and 69 % were stressed between the demands of caring for the relative and trying to meet
other responsibilities for family or work, and 17 and 62 % that they did not have enough money to take care
of their son” (Landfelt).

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

This scholarly article details a study of mental distress among caregivers of children with Duchenne and
Becker muscular dystrophy. The study finds that the mental health of a caregiver is linked to the mental and physical
health of the patient. Compared to caregivers of patients with excellent health, “caregivers to patients in fair/poor
health had a sixfold risk increase of anxiety and depression” (Landfelt). This shows that even if the patient is well
mentally, the declining physical health can greatly affect the caregiver and create a larger risk of developing anxiety
and depression. Efforts are focused on the child’s declining physical mobility and preventing a negative mental state
that the caregiver’s feelings are hardly noticed. The article suggests that doctors and staff can use the patient’s health
as an indicator of risk for the caregiver.
The article outlines direct results that prove a negative effect on the mental health of the caregiver. The
caregivers typically have a familial, most often parental, relationship to the patient, pushing them to leave their jobs
and social lives to take care of the child. This causes a steep decrease in leisure time that the caregiver can enjoy,
resulting in a decline in health-related quality of life (HRQL). The study’s results detailed that “ the loss in HRQL
among DMD caregivers was similar to or greater than published disutility estimates for patients suffering
from very serious and sometimes rapidly fatal diseases, including lung cancer and schizophrenia, systemic
lupus erythematosus, and epilepsy” (Landfelt). This indicates that DMD caregivers’ quality of life decrease
to the point where it is less than those with actual progressive, debilitating diseases.
 Attempting to balance work and caregiving, among other factors, causes stress in those that care for
children with Duchenne and Becker muscular dystrophy. These stresses have the ability to combine and
overwhelm the caregivier. The study found that “between 57 and 86 % of caregivers frequently or always
felt worried about the future of their child, 26 and 69 % were stressed between the demands of caring for the
relative and trying to meet other responsibilities for family or work, and 17 and 62 % that they did not have
enough money to take care of their son” (Landfelt). This indicates that there are multiple things for
caregivers to worry about and resolve. If parents are unable to care for the child because they are at work,
then they might feel compelled to quit to take more care of the child, but this results in less income and
difficulty affording treatment and supplies. The caregiver must be able to balance all the elements, which can
cause the person to be constantly mentally and physically exhausted.

Work Cited (correct MLA format):

Landfeldt, Erik et al. “Quantifying the burden of caregiving in Duchenne muscular dystrophy.” Journal of
neurology vol. 263,5 (2016): 906-915. doi:10.1007/s00415-016-8080-9

This is a reputable and reliable article because it was published in PubMed Central and it publishes journals from
the U.S. National Institutes of Health’s National Library of Medicine, which only contain documents by credible
writers.