This document provides a literature review on the experiences of mothers who care for children with muscular dystrophy. It discusses four main themes found in the literature: 1) The lifestyle of being a primary caregiver contributes to maternal stress and affects well-being, 2) Mothers experience difficulty adjusting to their child's condition, 3) Maternal anxiety is directly related to quality of life, and 4) Mothers struggle with coping. The review synthesizes findings from eight research studies and relates the topic to the discipline of psychology. It concludes by noting gaps in understanding the lived experiences of these mothers and the need for further research.

1. Running Head: ADVANCE NURSING RESEARCH
1
ADVANCE NURSING RESEARCH
2
Week #6 Assignment 1: The Details of Your EBP Project.
EBP Project Proposal Draft
Research topic
To assess the role of stigma towards mental health patients in
help seeking.
Research problem
Most studies have shown that stigmatization towards mental
health patients have been present throughout history and even
despite the evolution in modern medicine and advanced
treatment. Stigmatization have resulted from the belief that
those with mental problem are aggressive and dangerous
creating a social distance (Szeto et al., 2017). Also, mental
health-related stigma has become of major concern as it creates
crucial barriers to access treatment and quality care since it not
only influences the behaviour of the patients but also the
attitude of the providers hence impacting help-seeking. Most
studies have identified stigma as a barrier that is of significance
to care or help seeking while the extent to which it still remains
a barrier have not been reviewed deeply. Therefore, this study
will assess the role contributed by stigma in help seeking in
depth.
Research purpose
The intention of the research study is to review the association
between stigma, mental illness and help seeking in order to
assess in depth the role that mental-health stigma contribute in
help seeking.
Research objectives

2. a) To review the background history of mental-health related
stigma and mental problem or illness
b) To explore the impacts of stigma
c) To assess an association between the contributing factors of
stigma to help seeking
d) To assess the extent in which these factors of stigma
contribute to help seeking.
e) To assess the risk factors influencing help seeking with
regard to stigma
Research questions
a) What is the association between stigma towards mental health
patients and help-seeking?
b) To what degree does stigma constitute a barrier to the search
for help among mental health patients?
c) Are there populations that are more deterred from seeking
help due to stigma?
Research Hypothesis
Ho: stigma towards mental health patients have a significant
role in influencing help seeking
Ha: the extent to which stigma influences help seeking is not
significant
Theoretical framework
Stigma has been described as a negative effect of a label and the
product of disgrace that makes a person to be apart from others
(Henderson et al., 2013). It is built upon distinct constructs
prejudice, discrimination, and stereotypes (Henderson et al.,
2013). For example, believing that those people diagnosed with
mental illness is stereotype. Also, agreeing with the fact that
those with mental problem are indeed dangerous with a resultant
fear or anger is prejudice while discrimination is the total

3. avoidance to those with mental conditions as a result of
prejudice and stereotype. Mental problem or illness is a
condition that distorts an individual’s capability to relate to
others, thinking, mood feeling and also daily functioning (Szeto
et al., 2017).
Many studies have reported an existence of negative attitudes
with regard to mental health problem and social distance
(Henderson et al., 2013). This is because those persons with
mental problem are regarded as dangerous, a public nuisance
and aggressive. Some of the contributing factors include the
media which influences the society’s view, public perception
which is influenced by the level of understanding towards
mental health problems and the illness itself and also reluctance
to seek help which contribute to further stigmatization. Stigma
is therefore seen as barrier since it inhibits a person from
seeking help hence resulting to a treatment gap and
advancement in medical programs meant to reduce cases of
medical care (Szeto et al., 2017). Therefore, mental health-
related stigma is seen to influence help seeking by creating a
general pattern of behavior and attitudes.
References
Henderson, C., Evans-Lacko, S., & Thornicroft, G. (2013).
Mental Illness Stigma, Help Seeking, and Public Health
Programs. American Journal of Public Health, 103(5), 777-780.
doi:10.2105/ajph.2012.301056
Knaak, S., Mantler, E., & Szeto, A. (2017). Mental illness-
related stigma in healthcare. Healthcare Management
Forum, 30(2), 111-116. doi:10.1177/0840470416679413
Running Head: EVIDENCE-BASED PRACTICE PROJECT
1

4. RESEARCH
2
Advance Nursing Research
Week 4 Assignment # 2
Mental Health
Mental health is crucial in every stage of life. It is defined as
the state of psychological well-being whereby the individual
realizes a satisfactory integration instinctual drive acceptable to
both oneself and his or her social setting (Ritchie &
Roser, 2018). The status of mental health influences physical
health, relationships, and most importantly day-to-day life.
Mental health problems arise when there is a disruption in
mental well-being.
The risk factors to mental health problems are not limited and
therefore everyone is entitled to the problem irrespective of
gender, economic status, and ethnic group. For example, data
shows that in America one out of five individuals experience
mental health problems annually, with mental disorders being
recognized as the leading cause of disability not only in the
United States but also globally (Ritchie & Roser, 2018). Mental
health disorders are seen to be complex and of many forms such
as anxiety, mood, and schizophrenia, among others.
Data shows that in 2017 about seven hundred and ninety-two
million people lived with a mental disorder. Challenges have
been identified with data presentation since mental health
disorders are under-reported worldwide (Ritchie &
Roser, 2018). World health organization data shows that mental
health disorders are not only determined by one’s ability to
manage their thoughts, behavior and interaction with others but
also economic, environmental and social factors. For example,
the on-going global financial crisis creates a macroeconomic
phenomenon that provides a significant opportunity for mental

5. health consequences with an increased rate of suicide and
harmful substance use.
Most research studies have shown that there exist many gaps in
relation to mental health problems. The gap ranges from
treatment interventions and effective use of the available tools
to reduce the issues of mental health. For example, there exists
a research gap on the interventions meant to reduce and
eradicate stigma which has been recognized as a determinant of
mental health problems and this spiked my interest.
Therefore, in order to fill this gap such question as a) What is
the association between stigma towards mental health patients
and help-seeking? b) To what extent does stigma constitute a
barrier to the search for help among mental health patients? And
c) Are there populations that are more deterred from seeking
help due to stigma? Have to be answered through research to get
the intended purpose.
References
Ritchie, H., & Roser, M. (2018, April). Mental Health.
Retrieved from https://ourworldindata.org/mental-health
W.H.O. (2020). Mental Health. Retrieved from
https://www.who.int/mental_health/en/
Running Head: LITERATURE REVIEW MATRIX
1
LITERATURE REVIEW MATRIX

6. 4
Advance Nursing Research (Literature Review Matrix)
Week # 4 Assignment 1
APA Reference
Research Question
Type of Study
Research Design
Sample, Sample Size, and How Selected
Instruments Used, Reliability and Validity, Data Collection
Methods
Results (including statistical analysis
Consistent with other Literature)
Limitations
(Olausson, Lindale & Ekberg, 2013)
“What is the impact of care and treatment in ICUs on the patient
recovery process and wellbeing?”
Cross-sectional
Survey
The study focused on a sample of twelve (12) patients – six men
and six women.
The data collection is standardized by the use of open-ended
questionnaires that provided the patients with the freedom to
answer questions to the best of their ability. The instrument use
is highly valid since it measures what was intended to do - to
evaluate the impact of patient room in recovery process of
patients admitted to the ICU. Also, the instrument is reliable
since it acknowledges the involvement of the researchers which

7. gives the confidence the method used to collect the data.
The study results revealed that the natural environment and
source of light in the room enhanced patient’s positive thought
and emotions in a critical care setting (Olausson et al., 2013).
This is line with what Florence Nightingale conceived the idea
of perceiving patient room, as an essential part in patient’s
relief as well as health outcomes. According to Nightingale,
patient’s room plays is key element in aesthetic sensory
perceptions. Also, she asserts that a room is not a place for just
a sleep, but somewhere where a patient’s well-being is
promoted. Such may include decorations, flowers, and ambient
music that may promote healing in an ICU setting.
The study was limited by the low number of the study subjects.
Also, the existence of uncertainty concerning ICU delirium
prevalence. However, other research reveals that revealing
delirium in ICU patients may offset the uncertainty. Also, the
low number of participants may result in trivial variations,
which according to the researchers can be balanced by a dense
description of interview questions of real-world experiences.
(Timmermann, Uhrenfeldt & Birkelund, 2014).
“How seriously ill hospitalized patients’ experience and assign
meaning to their patient room?”
Cross-sectional
Survey
The study focused on a sample size of nine (9) patients is three
Swedish hospitals.
The instrument used- questionnaire – is standardizes the data
collection process, which in turn validates the process by
measuring what was purported to measure. Also, the instrument
is highly reliable because it incorporates researcher
participation, thus giving it the confidence, it deserves as a data

8. collection instrument.
The study findings showed that viewing natural light in
patient’s room promotes positive thought for critically ill
patients (Timmermann et al., 2014). Other literature has
identified other related themes such as enhancing positive
thought by overriding negative ones, promoting hope and a
positive mood, and helps in bringing good memories.
Essentially, being admitted in the ICU deprives patients of the
freedom to go outside and experience the natural environment.
However, there are different other methods of experiencing this
when hospitalized. This could be an ambient light from a glass
windows, and doors that let in fresh air. Also, the chair can be
placed strategically next to the window so that the patient can
have an unhindered view of the outside environment.
The study was limited by the insufficient amount of empirical
research, hence inadequate literature to aid in carrying out the
research, such as the role of aesthetic environment in patient’s
well-being, which provides better knowledge about the
relevance of patient’s room in healing. Also, the limited number
of participants affects the ecological generalizability of the
findings, especially in larger sample sizes.
References
Olausson, S., Lindale, B., & Ekberg, M. (2013). A
phenomenological study of experiences of being cared for in a
critical care setting: The meanings of the patient room as a
place of care. Intensive and Critical Care Nursing, 29(4), 234–
243. doi: 10.1016/j.iccn.2013.02.002
Timmermann, C., Uhrenfeldt, L., & Birkelund, R. (2014). Room
for caring: patients’ experiences of well-being, relief and hope
during serious illness. Scandinavian Journal of Caring Sciences,
29(3), 426–434. doi:10.1111/scs.12145
Week 9 Review of Literature Example
Written by Jennifer Oddy, Entitled: Distress And Coping of
Mothers of Children With Muscular Dystrophy

9. Introduction
The purpose of this literature review is to discuss the current
knowledge regarding experiences of mothers who care for their
child with muscular dystrophy, their coping mechanisms, and to
understand their lived experiences in order to provide better
nursing care to these mothers. Not only will the current
knowledge be addressed, this literature review will also speak
to what is unknown about this phenomenon. The concepts of
maternal stress/well-being, adjustment, anxiety, and coping will
all be addressed as common themes emerging from the data.
The research question for this study is:
What are the lived experiences of mothers who care for their
child with muscular dystrophy?
The search for literature took place in the spring of 2015, which
was completed using EBSCOhost to search 17 online databases
through the Regis College Library. Google Scholar was also
used, which brought up articles from PubMed that have been
utilized. Eight peer- reviewed research journal articles were
obtained and scrutinized for the purpose of this review of
literature and the literature matrix (Appendix B). Search terms
included: children, chronic disease, mother, distress, coping,
muscular dystrophy, maternal experience, stress, and
adjustment. To ensure the most relevant literature was cited, the
majority of the articles were from 2007-2013. One article was
from 2003, two from 2005, and the remaining five articles were
between 2007 and 2013. The older articles were included for the
purpose of their significance to the subject matter. However,
this gap in literature provides evidence that there is need for
further research regarding the lived experiences of mothers who
care for their child with muscular dystrophy.
This review of literature will include empirical and theoretical
sections, as well as a brief description of how the researcher
arrived at this topic of interest. In the empirical literature
section, the literature from eight peer-reviewed journals will be
synthesized. Individual findings from certain articles will be
cited in order to provide details about the experiences of

10. mothers caring for their child with muscular dystrophy. These
experiences will then be related to the discipline of psychology,
demonstrating the importance of a multi-disciplinary approach.
The empirical literature will be concluded with the gap in
literature and why there is a need to further investigate this
topic. These topics are all used to form the following sub-
headings: overview, lifestyle as a contributor to maternal stress
and well-being, difficulty adjusting, anxiety directly relates to
quality of life, the struggles of coping, maternal stress related to
other disciplines, a summary, and the gaps in literature. The
purpose of these sub-headings is to organize the empirical
literature section.
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

11. 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).
Carroll, Gallagher, and Phillips (2010) conducted a descriptive
comparative study regarding the psychosocial predictors of
sleep quality in parents caring for a child with a chronic
disease. The researchers used convenience sampling to obtain
67 parents of children with developmental disabilities to
compare to 42 parents of typically-developing children. The
results of the study identified sleep quality as an important
aspect of well-being and strongly related it to overall quality of
life. There is reasonable consensus across the literature that
problematic and challenging behaviors are a main source of
stress for parents of children with a chronic disease (Carroll et
al., 2010). Having a child with muscular dystrophy may invoke
a state of stress in mothers. Unfortunately, stress has been
found to be the strongest predictor of poor sleep quality (β =.45,
t = 4.17, p <.001) and accounted for 30% of the variation in
sleep quality among mothers who care for a child with a chronic
disease. Knowing this, it is no surprise that parents of children
with chronic disease report poorer sleep quality than parents
who do not face this burden. In addition, the majority of these
parents met the “poor sleepers” criterion. While sleep is

12. something that most people take for granted, it is an important
part of well-being that can be altered in impeding circumstances
such as having a child with muscular dystrophy (Carroll et al.,
2010).
Another descriptive comparative research study conducted by
Nereo, Fee, and Hinton (2003), was aimed at examining parental
stress in mothers of boys with muscular dystrophy (MD). The
sample was done by consecutive and convenience sampling, and
consisted of 112 mothers of boys with MD, 800 mothers of
healthy children, 28 mothers of children with cerebral palsy,
and 46 siblings of boys with MD. The results demonstrated that
stress related to child behavior was higher in the MD group
(23.98) than the normative group (18.7). The mean MD parent-
child dysfunctional interaction score was also much great in the
MD group (M=23.98) than the normative sample (M=18.7).
Lastly, the mean MD difficult child score (M=30.64) was
greater than the normative sample (M=26). These results
demonstrate the presence of problem child behaviors
consistently predicting maternal stress, which relates to child
behavior and the difficulty of caring for a child with muscular
dystrophy. In addition, Nereo and colleagues (2003)
characterize muscular dystrophy as a complex chronic condition
since it involves specialized and time-consuming care. The
disease poses stressors in terms of daily care requirements.
Negotiating wheelchair transportation, meeting recommended
physical therapy requirements, and increasing physical demands
are just a few of the accommodations that mothers must make
time for in their daily schedules. These physical burdens can
place a strain on the caregiving mother and increase preexisting
stress (Nereo et al., 2003).
In addition to the physical aid that mothers provide, muscular
dystrophy can also affect mental health. The disease is both
chronic and terminal, therefore carrying the necessity for many
psychological adjustments to occur within the family at any
given time (Nereo et al., 2003). Furthermore, parental stress can
have a direct impact on the health of the child. Lynn et al.

13. describe the concept of uncertainty in relation to family and
dynamics. As parental uncertainty increased, child uncertainty
also increased (Lynn et al., 2010). As uncertainty in the child
increases, so do anxiety, depression, and psychological distress.
This is not healthy for the child, nor the mother and/or the rest
of the family that is involved.
Difficulty adjusting. Chronic diseases in children have an
impact not only on the child, but also on other members of the
family. Barlow and Ellard (2005) provided an overview of the
current literature regarding the psychosocial well-being of
children with chronic disease, their parents, and siblings. A
total of 391 articles were identified that were selected according
to strict inclusion criteria. Two researchers reviewed the
articles for reliability. The findings were consistent that
emotional distress (anxiety and depression) was greater among
parents of children diagnosed with chronic diseases. Mothers
may not have the financial ability to hire a caregiver, leaving
the stress solely on her. It then becomes an issue that the
mother does not have time to run errands, get the household
chores done, or even be able to work. Not only does this hinder
the mother, it also impedes on the already delicate health of the
child (Barlow & Ellard, 2005). Consistent with this research,
the article “Correlates of maternal and paternal adjustment to
chronic childhood disease” states that mothers reported
significantly more difficulties than fathers while attempting to
adjust to things like new lifestyle, caregiving requirements, and
changing prognosis (Crawford & Dewey, 2007). Specifically,
mothers were prone to higher levels of psychological distress if
they had poor family cohesion and less social support. This is
consistent with the rest of the literature, Barlow & Ellard
(2005) stating that mothers are less likely to be affected by the
stress of their child’s chronic disease if they have a social
output, and Brown et al. (2008) referring to demographic
variables such as resources and social groups and how they play
a role in the support of these parents.
Crawford and Dewey (2007) conducted a descriptive study in

14. order to determine if different factors were associated with
maternal and paternal adjustment to having children with life-
limiting chronic diseases. Convenience sampling was used in
order to obtain a sample of 11 mothers and 9 fathers of children
with muscular dystrophy. A control group of 19 mothers and 11
fathers of healthy children was also obtained for comparison.
The results demonstrated that mothers reported significantly
more adjustment difficulties than fathers (F[1,124]= 6.57, p<
.05), had a harder time adapting (F[1,124]= 4.80, p< .05), and
families with children with chronic diseases had lower scores in
family cohesion (F[2,124]= 4.84, p< .01). Through data
collection, Crawford and Dewey attribute adaptation struggles
to things like previous psychological functioning of family
members, socioeconomic status, concurrent psychosocial
stressors, and quality of relationships. These are all things that
have the potential to significantly alter a mother’s ability to
adjust. Another large factor that plays a role in maternal
adjustment is the prognosis of muscular dystrophy. It is a
progressive and fatal disease where the child can take a turn for
the worse at any given moment (Nereo et al., 2003). Because of
this, it is difficult for mothers to adjust to an ever-changing
state of health of their child (Lucio et al., 2013). Lucio et al.
also states the significance of this in the health care setting.
“The adaptation process of mothers is not instantaneous and it
can change from one period of control to a situation of lack of
control. Taking care of a sick child requires skills, knowledge
about the disease and the devices to be used. The mothers need
clear information from the health professionals and their doubts
need to be clarified, so that the care to these children is
performed safely and autonomously,” (Lucio et al., 2013, p. 87)
Anxiety directly relates to quality of life. In a qualitative,
descriptive research study, Lucio and colleagues (2013) aim to
understand the mother’s perspective on caring for their child
with muscular dystrophy. Convenience sampling was used to
select children with muscular dystrophy from a public hospital,
and the nurses then made contact with their mothers. The open-

15. ended interviews revealed important information about the
quality of life while caring for a child with muscular dystrophy.
Mothers considered caring for their child to be a difficult task,
since they deal with unknown devices that their child has
become dependent on. This leads to a chronic fear of losing
their child and fear of what happens when the electricity goes
out. All this fear causes anxiety, which the researchers found to
directly affect the quality of life of the mother as well as child.
Quality of life can be greatly negated while caring for a child
with muscular dystrophy. Mothers often leave their chores,
change their daily routine, and postpone their commitments in
order to stay with their child who is dependent on their care.
Not only are these children care-dependent, a lot of them also
rely on mechanical equipment to live. Much of the anxiety
experienced in these mothers roots from “being afraid with the
possibility of them not surviving, due to the malfunction of the
equipment,” (Lucio et al., 2013, p. 86). Besides the fear of
death, anxiety is highlighted as a factor that directly afflicts
with quality of life of both the children and mothers (Lucio et
al., 2013).
The struggles with coping. Webb (2005) completed a qualitative
grounded theory study that was completed with the purpose of
addressing the lack of available information for parents about
coping with muscular dystrophy (Webb, 2005). Twenty-three
parents (15 families) of children with MD were selected from
postings on the internet and from an annual Parent Project
Muscular Dystrophy Conference. Six major coping themes
emerged from the in-depth interviews: (1) MD is caused from a
mutation in the X chromosome, therefore mothers tend to blame
themselves; (2) Diagnosis is the first tough issue that parents
face; (3) Mothers feel fear, denial, anger, guilt, and confusion
about the diagnosis; (4) Mothers sought “treatment” to help
slow the progression; (5) The anxiety related to their child
chronically relying on equipment; (6) Worries about the child
finishing school. These are all issues that cause stress and
anxiety in mothers caring for their child with muscular

16. dystrophy. In one instance, the researcher found that families
“coped” by overprotection, lack of child discipline, and magical
thinking (Webb, 2005). On the contrary, there were some
positive findings. Four types of coping strategies emerged: (1)
Families focused on the present, living one day at a time; (2)
Families attempt to live as normal a life as possible; (3)
Families had a proactive attitude regarding care for the child in
order to reduce the risk of crises; (4) Families developed coping
resources based on personal strength (Webb, 2005). Although
there are not a lot of studies regarding coping skills in parents
of children with disabilities, what is available demonstrates the
need for progression. This demonstrates the necessity to
empower other families to learn coping strategies like these.
Parents want to proactively participate in their sons’ lives, and
they, as well as practitioners, need to encourage other parents to
do the same (Webb, 2005).
Maternal distress related to other disciplines. The effects of
having a child with a chronic disease definitely influence the
mind and behavior of the mothers doing the caregiving (Barlow
& Ellard, 2005). A number of studies have confirmed an
increased risk for psychological dysfunction in mothers who
have chronically ill children, one of which will be discussed in
detail, “Single parents of children with chronic illness: an
understudied phenomenon,” (Brown et al., 2008). Brown and
colleagues performed a narrative systematic review whose
purpose was to examine the literature revolving around chronic
illness and to evaluate the impact on single parenting and
children with chronic diseases. Twenty articles were used to
study single parenting. The researchers found that the anxiety
experienced by a mother during the treatment of her child was a
predictor for later posttraumatic stress symptoms (PTSS).
Parents of children with chronic diseases also demonstrated
increased rates of treatment for anxiety and had increased
maternal negative affect scores. These parents have few social
resources, thus increasing parental stress and other
psychological disorders. These results just barely skim the

17. surface of the complicated psychosocial issues experienced
when caring for a child with a chronic disease (Brown et al.,
2008).
Summary. The literature provided supports this study and
addresses the research question. The literature provides insight
on what the experiences of mothers are who care for their
children with muscular dystrophy. In conclusion of the
empirical literature section, it is safe to say that mothers caring
for their child with muscular dystrophy experience a great
amount of stress and anxiety (Barlow & Ellard, 2005; Brown et
al., 2008; Carroll et al., 2010; Lynn et al., 2010; Nereo et al.,
2003). This can affect maternal well-being, and also take a toll
on the child’s health (Carroll et al., 2010). Stress and anxiety
play a large role in the quality of life of mothers, which reflects
in the care they provide to their child (Lucio et al., 2013).
These things can all lead to difficulty adjusting and poor coping
skills in the mother. Stress, anxiety, maternal well- being,
adjustment, and coping all relate to the discipline of
psychology, which demonstrates the need to approach this
problem in a multi-disciplinary fashion. If practitioners,
psychologists, social workers, parents, etc. can spread their
knowledge about healthy coping and adaptation, other parents
could be empowered to live the same way, bettering their lives
as well as that of their child (Webb, 2005).
The range of psychological functioning in mothers is a very
wide spectrum. That being said, the emphasis should be placed
on identifying triggers that influence mothers’ psychological
responses to the stressors of a child’s chronic disease. Mothers
in this situation should make time for themselves, even if that
means having a family member take over the caregiving role for
a few hours. In an article based upon stress reduction in mothers
of children with autism, researchers from Vanderbilt University
speak on the subject. Studies have shown clear benefits of
mother-led stress-reduction classes for women in the same,
unique situation. Researchers created two programs: one
focusing on mindfulness and training, the other emphasizing

18. dealing with guilt by developing character strengths and
positive, healthy mental exercises. “Evaluations conducted
during and after the study showed that the mothers benefited
from either program. They had lower levels of stress, anxiety
and depression, along with improved sleep and life satisfaction.
They also had fewer ‘dysfunctional,’ or unhelpful and negative,
interactions with their children,” (Autism Speaks, 2014). It is
essential that mothers partake in such activities in order to
maintain a healthy lifestyle and relationship with their family
and children.
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

19. 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.