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INTEGRATIVE LITERATURE REVIEW 2
Abstract
Purpose: The purpose of this integrative review is to identify factors that influence the quality of
Background: MS is an autoimmune disease that affects the myelin sheath of neurons in the
central nervous system with an unpredictable disease process that may lead to disability.
Receiving such diagnosis can alter one’s view of self and quality of life may be shifted during
Method: This is an integrative review in which research was gathered from online databases.
The articles mentioned are qualitative studies chosen based on the data that was provided. The
information from the articles were then used to identify factors affecting quality of life in
Limitations: Limitations of this study include the author’s inexperience with constructing an
integrative review, lack of current research regarding topic of discussion as well as lack of
Results and Findings: Lack of knowledge on MS and its disease course is a source of anxiety
for patients and their families. Support systems can assist in the development of great coping
as well as more patient education from physicians and nurses to relieve stress and anxiety.
Recommendations for future studies include research to be conducted after thorough patient and
family education has been provided including research in the United States.
INTEGRATIVE LITERATURE REVIEW 3
The purpose of this integrative review is to identify factors that influence the quality of
life in patients diagnosed with multiple sclerosis (MS). MS is an immune-mediated disease, one
of the most common causes of neurologic disability in adults and is twice as likely to occur in
women than men (United States Department of Health and Human Services, 2013). Decline in
mobility, vision, continence, and debilitating fatigue are the most common symptoms (Frost,
Grose, & Britten, 2017). The disease process and sequelae are unpredictable in their occurrence
and severity which accounts for altered views of one’s self and need for coping mechanisms
(Dehghani, Nayeri, & Ebadi, 2017; Frost et al., 2017). According to the National Multiple
Sclerosis Society, it is estimated that 2.3 million people across the globe live with MS. In the
United States, there has not been a sound study conducted to identify prevalence since 1975
Published literature has provided qualitative data regarding the exploration of one’s
diagnosis and the perception of self (Strickland, Worth, & Kennedy, 2016). People with MS
often have trouble coping with their diagnosis initially and fear for the uncertainty of what the
future of their disease process holds (Dehghani et al., 2017). Those diagnosed with MS display
different symptoms at varying rates and severity and require a strong support system and
community to ensure their physical and psychological needs are met (Galushko et al., 2014).
The aim of this study is to review and discuss data related to the author’s PICOT question: “How
This integrative review is constructed using five research articles. The method used by
the author began by using search engines such as PubMed, Google Scholar, and EBSCO’s
INTEGRATIVE LITERATURE REVIEW 4
Nursing Center Reference Plus databases. Key words used in the search included multiple
sclerosis diagnosis qualitative, lived experiences of multiple sclerosis, and quality of life. Results
yielded just under 100 articles. The articles were filtered by year, English language, location of
the study and relevance to the PICOT question. The five-year publishing ranges from 2013-2018
and full-text availability were limiting factors in the data gathering process. There were no
results found on studies conducted in the United States, so information was gathered on a global
plane of participants.
Articles were chosen based on relevance to the PICOT question, design methods, and
sample sizes appropriate for qualitative research for qualitative analysis. The design methods
were face-to face interviews with open-ended questions to facilitate discussion relevant to the
PICOT question: “How do patients with MS perceive quality of life after diagnosis?” Qualified
authors included Registered Nurse (RN) and Doctor of Philosophy (PhD). The total number of
articles collected for this study is five and all five are qualitative studies (Dehghani et al., 2017;
Fallahi-Khoshknab, Ghafari, Nourozi, & Mohammadi, 2014; Frost et al., 2017; Galushko et al.,
Findings
The findings from the articles identified a need for increased support in physical and
mental well-being for those living with MS (Dehghani et al., 2017; Fallahi-Khoshknab et al.,
2014; Frost et al., 2017; Galushko et al., 2014; Strickland et al., 2016). A synopsis of the five
research articles is included in Table 1 – Article Evaluation. The following is a summary of the
In a study conducted by Dehghani et al. (2017), the researchers identified factors that
affect coping in those diagnosed with MS. There was no framework to provide a structured guide
INTEGRATIVE LITERATURE REVIEW 5
or identify theories to predict relationships in data. The design was qualitative with a
The researchers collected data on factors that affect coping through semi-structured face-
Interviews began with questions asking participants to explain their experience with the illness
and symptoms they have faced, problems have they encountered during this illness, and coping
mechanisms. Findings from the interviews were analyzed and separated into five categories:
Responses for social support included family, friends, and organizations such as the
Ministry of Health and the Multiple Sclerosis Society (Dehghani et al., 2017). Ministry of Health
assists in covering costs of treatments. Lenience consisted of patients being grateful they didn’t
have a disease that was potentially terminal. One participant stated they felt grateful that “at
least” they did not receive a diagnosis of cancer (Dehghani et al., 2017). Many of the patients
sought out faith and gave their worries to God and his plan. Education on the illness relieved
anxiety for some participants because not knowing the components, treatment options, or
prognosis of the illness was a stressor. Loss of mobility is a sequela often seen in those with MS.
Participants stated an increase in economic and environmental strain due to the need for
renovation of their living space to accommodate handicap accessibility (Dehghani et al., 2017).
content analysis studying the experiences of patients when faced with their diagnosis. Data was
collected using unstructured interviews with open-ended questions and a sample size of 25
INTEGRATIVE LITERATURE REVIEW 6
participants. Findings from the interviews were analyzed and divided into four categories:
Most of the participants lacked knowledge on the disease and had negative feelings
toward what the future of the disease process held for them (Fallahi-Khoshknab et al., 2014).
Like the article from Dehghani et al. (2017), gaining knowledge about the disease eased stress
and anxiety for the participants. Many wanted to hide the disease from others because of fear of
rejection and not wanting others to see them differently than prior to the diagnosis. Some were
fearful to tell their employers the news of their diagnosis at the chance they may face termination
(Fallahi-Khoshknab et al., 2014). Participants found faith and prayer as a method of coping.
In a study conducted by Frost et al. (2017), the authors gathered participants to study the
management of self in those with progressive MS, which is a more advanced stage. Self-
management literature forms the framework for the study. The study design was a qualitative
interview with purposive sampling. The sample consisted of 14 participants, 10 women and 4
men. The interviews took place in the patient’s homes to provide a more comfortable
environment to ease the flow of conversation. After data was collected and analyzed, there was a
theme amongst the male participants with a sense of fear and disbelief in their diagnosis.
Women felt comfort in having a diagnosis to validate their symptoms were real and not
Galushko et al. (2014) conducted a study identifying the unmet needs of patients with
MS. The design was qualitative and consisted of episodic face-to-face interviews with open-
ended questions. The sample consisted of 15 patients, five of the patients chose to be
accompanied by a caregiver whose additions to the interview were included in the data. After
INTEGRATIVE LITERATURE REVIEW 7
data was collected, the results were divided into four categories: support from family and friends,
had diminished (Galushko et al., 2014). Around half of the patients expressed that they wished
their support persons received education and counseling to gain understanding on the illness and
prognosis (Galushko et al., 2014). Health care services was the largest category where patients
identified unmet needs. Participants expressed a desire for home health visits, and a concern for
lack of handicap accessibility which expands to places other than health care facilities. Methods
of financing to make homes and vehicles handicap accessible was a concern for many of the
participants (Galushko et al., 2014). Participants found that everyday tasks around the home
became increasingly difficult and would benefit from having additional help with daily activities
(Galushko et al., 2014). Many patients with MS face disability and are forced by their physical
limitations to resign from their jobs. Participants expressed a desire to return to work and enjoy
The journey of the diagnosis was explored by Strickland et al. (2016). A qualitative
hermeneutic phenomenological study was conducted to interpret the meaning of the experience
of being newly diagnosed. Ten participants were gathered for semi-structured interviews that
were conducted in participants homes. Participants were all diagnosed within the past six
months. After data was collected and analyzed, three categories had been developed: road to
diagnosis, the liminal self, and learning to live with MS: an uncertain future (Strickland et al.,
2016).
Each participant gave details to events leading up to diagnosis and symptoms, some
described the relief they felt from receiving the diagnosis because they could move forward and
INTEGRATIVE LITERATURE REVIEW 8
begin treatments (Strickland et al., 2016). Some felt they lost part of their identity as a person
and their role in the household. One participant stated she felt her role as a mother was hindered
and feels guilt (Strickland et al., 2016). Like the previous articles stated, support systems were
not as supportive and functioning in daily life became increasingly difficult (Dehghani et al.,
The articles gathered for this integrative review display there is a decrease in quality of
life in those diagnosed with MS. There is limited knowledge on the disease and the course it
may take. The author analyzed the data and grouped similar findings into three categories:
knowledge deficit, support, and uncertain future. The following is a discussion on implications
Knowledge Deficit
Knowledge deficit was a theme in all five studies in relation to lack of knowledge of MS
and self-management strategies from both the participants and support systems (Dehghani et al.,
2017; Fallahi-Khoshknab et al., 2014; Frost et al., 2017; Galushko et al., 2014; Strickland et al.,
2016). Some participants felt relief from obtaining a diagnosis, but shortly felt anxiety due to the
lack of education on what the disease meant to their future (Dehghani et al., 2017; Frost et al.,
2017). Fallahi-Khoshknab et al. (2017) stated that participants lacked the education they needed
during the communication of their diagnosis and sought answers, which gave a sense of relief to
some. One participant stated they tried to hide their disease from others because they lacked
understanding of the illness, and if they had understanding, they would act differently and
display “pity” (Fallahi-Khoshknab et al., 2014). Some participants had limited mobility, which
will continue to decrease, and were unsure of how to manage everyday tasks around the home,
INTEGRATIVE LITERATURE REVIEW 9
and in public (Galushko et al., 2014; Strickland et al., 2016). Lack of education was not limited
to the person with the illness. Spouses, children, and friends had difficulty adjusting and
Support
Results from three of the studies include discussion on support systems (Dehghani et al.,
2017; Fallahi-Khoshknab et al., 2014; Galushko et al., 2014). Ranging from positive support
from loved ones to lack of education and understanding of the changes that come from the illness
(Dehghani et al., 2017; Fallahi-Khoshknab et al., 2014; Galushko et al., 2014). In the study
conducted by Dehghani et al. (2017), participants responded positively about the support they
received during the beginning stages of their illness and throughout. Others reported having
negative experiences with their family and friends, such as being talked to differently and being
looked down upon (Fallahi-Khoshknab et al., 2014). In the study by Galushko et al. (2014),
participants reported diminished friendships and romantic relationships. Having a strong support
system has a large impact on coping and the quality of life of individuals facing the uncertain
Uncertain Future
Participants stated in four of the articles concern about what the disease process had in
store for their future (Fallahi-Khoshknab et al., 2014; Frost et al., 2017; Galushko et al., 2014;
Strickland et al., 2016). Participants experienced great fear with the news of their diagnosis.
One person stated they hid their diagnosis from their employer due to fear of losing their job
from being deemed unable to work; the patient was receiving costly treatments and was afraid of
losing their source of income (Fallahi-Khoshknab et al., 2014). Some participants felt a sense of
relief after receiving a diagnosis, so they could move forward and begin the treatment process;
INTEGRATIVE LITERATURE REVIEW 10
however, others began a grieving process related to fear of the uncertain future (Frost et al.,
2017). Being able to manage tasks of everyday living became a trigger of anxiety for many, one
participant stated taking care of household chores had become a battle due to the intense fatigue
and decreased mobility (Galushko et al., 2014). The fact that symptoms can progress rapidly or
slowly over time gave one participant a positive attitude to take everyday in stride and tried not
Limitations
In the process of developing this integrative review, the author encountered limitations.
A major limitation is the authors lack of experience and knowledge of the integrative review
process. The author is a student, and that would not consider her qualified to identify reliable
research articles because she is not a registered nurse. The author does have a personal
background on the topic of MS, which makes her more qualified to gather qualitative data on the
subject.
The data collection was another limitation for this review. The author faced challenges
finding articles within the allotted publishing range from years 2013-2018, articles that were full-
text, and studies conducted in the United States. The titles of articles found originally were
misleading and did not offer data regarding the patient experience or qualitative data. After
searching through multiple databases and applying different keywords five articles were
eventually obtained, but none of which were studies conducted in the United States. Lack of
data from the United States was a limiting factor because the PICOT question originally was
focused on patients in the United States, so changes to the PICOT had to be made.
Conclusion
INTEGRATIVE LITERATURE REVIEW 11
The findings from this integrative review suggest patients with MS are at risk for
decreased quality of life (Dehghani et al., 2017; Fallahi-Khoshknab et al., 2014; Frost et al.,
2017; Galushko et al., 2014; Strickland et al., 2016). The PICOT question is addressed by the
results as follows. Lack of knowledge on this illness which impacts the response of being
diagnosed as well as the empathy and support from loved ones. Findings included support
systems that were strong helped the participant cope, and decreased anxiety, while other
participants found their support systems dwindle (Dehghani et al., 2017; Fallahi-Khoshknab et
al., 2014; Galushko et al., 2014). Fear of the future may bring patients anxiety and depression
due to the unpredictable rate of disease progression and types of symptoms faced. Decreased
mobility is one of the most common symptoms experienced. Participants reported challenges
gathering financial resources to make homes and vehicles handicap accessible to increase range
of mobility (Galushko et al., 2014). Dehghani et al. (2017) reported organizations such as
Ministry of Health that cut costs for treatments which decreases financial strain for families
needing to remodel their homes. The author of this review was unable to find research
conducted in the United States. Recommendations for the future include more research to be
conducted in the United States, and education on MS and its disease course to the patients
receiving the diagnosis and the general public, so more people gain knowledge and
References
Dehghani, A., Nayeri, N., & Ebadi, A., (2017). Antecedents of coping with the disease in patients
Fallahi-Khoshknab, M., Ghafari, S., Nourozi, K., & Mohammadi, E. (2014). Confronting the
Frost, J., Grose, J., & Britten N., (2017). A qualitative investigation of lay perspectives of
Galushko, M., Golla, H., Strupp, J., Karbach, U., Kaiser, C., Ernstmann, N.,…Voltz, R. (2014).
10.1089/jpm.2013.0497
https://www.nationalmssociety.org/About-the-Society/MS-Prevalence
Strickland, K., Worth, A., & Kennedy, C. (2016). The liminal self in people with multiple
United States Department of Health and Human Services. (2013). Multiple sclerosis. Retrieved
from: https://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=103
Running head: INTEGRATIVE LITERATURE REVIEW 13
First Author (Year)/Qualifications Dehghani, A., Nayeri, N., & Ebadi, A., (2017). Antecedents of coping with the disease
in patients with multiple sclerosis: a qualitative content analysis. International
Journal of Community Based Nursing and Midwifery, 5(1), 49-60.
Background/Problem Statement Along with physical disability and illness, there are mental illnesses that accompany
the disease process of MS and identifying factors that affect coping based on
the patient experience is necessary to improve quality of life
The study was performed to explore the antecedents of coping with the disease in
MS patients
Design/ Qualitative research with conventional content analysis approach performed from
Method/Philosophical April-December 2015
Underpinnings Primary participants were selected from MS patients the researcher knew
Inclusion criteria:
o Definitive MS diagnosis
o Willingness to participate in the study
o Ability to express experiences
Exclusion criteria:
o Mental illness confirmed by a physician or the individual patient
o Lack of willingness to participate in the study
Sample/ Setting/Ethical 11 patients based on purposive sampling based on willingness and ability to
Considerations provide experience with an attempt to observe max variations in terms of
demographic characteristics
o 5 male 6 female
o Age range from 24-46 years
o Disease process range from 1-20 years
The setting was not stated, other than it was a “peaceful setting”
Study was approved by ethics committee of Tehran University of Medical Sciences
in Iran
INTEGRATIVE LITERATURE REVIEW 14
Major Variables Studied (and their Factors that affect coping with MS diagnosis
definition), if appropriate
Measurement Tool/Data Collection Data collected through deep and semi-structured face-to-face interviews
Method o Each interview lasted 60-110 min
o Conducted in a “peaceful” environment with prior agreement to participate
Interviews began with the general and main questions:
o Explain briefly about the nature of the illness and its problems
o What did you do when you were diagnosed with the disease?
o What factors help you better cope with your illness?
o How did you come along with this disease?
o What problems have you been confronted with during this disease?
Data Analysis Qualitative content analysis by conventional method and Graneheim and Lundman
model with the following
o Implementing the interview immediately after it was completed
o Reading the entire text to understand its general content
o Determining the units of meaning and initial codes
o Classifying the initial codes in more comprehensive categories
In this study, after each interview the text was transcribed and typed verbatim in
Microsoft Word and initial codes were extracted after several times of listening
Categories and sub-categories were formed based on the similarities of the
extracted codes, then the initial list of categories were reviewed and recategorized
to reach a final consensus
INTEGRATIVE LITERATURE REVIEW 15
First Author (Year)/Qualifications Fallahi-Khoshknab, M., Ghafari, S., Nourozi, K., & Mohammadi, E. (2014). Confronting the
diagnosis of multiple sclerosis: a qualitative study of patient experiences. The Journal of
Nursing Research, 22(4), 275-282. doi: 10.1097/jnr.0000000000000058
Background/Problem Statement It is important to understand the experiences of the patients facing the disease to help and
support their families, community, and healthcare teams
Sample/ Setting/Ethical 25 people with MS chosen via purposeful sampling from the MS association in Isfahan and
Considerations Tehran, each interview lasted 45-75 minutes
o 18 women
o 7 men
o Ages 20-55 years
Interview setting was not mentioned
Inclusion criteria: awareness and willingness to communicate experience and having an MS
diagnosis greater or equal to 1 year, no hearing or speaking impairment, no history of other
pathological or chronic disease
Authors obtained approval from the ethics committee of the University of Social Welfare
and Rehabilitation Science
o All participants were informed about the importance, purposes, and methods of the
study and that interviews would be recorded
o Participants were informed that interviews were recorded and they could refuse to
participate further in the interview if they so choose
o Participants were reassured about confidentiality
Major Variables Studied (and their This study delves into the experiences of patients in confronting their MS diagnosis
definition), if appropriate
o Anger
o Fear and anxiety
o Consternation and confusion
o Being demoralized
Findings include that process diagnosis, care and treatment, should be aimed towards
reinforcing positivity rather than the negativity that is commonly experiences
First Author (Year)/Qualifications Frost, J., Grose, J., & Britten N., (2017). A qualitative investigation of lay perspectives of
diagnosis and self-management strategies employed by people with progressive multiple sclerosis.
Health, 21(3), 316-336. doi: 10.1 177/1363459316674787
Major Variables Studied (and their Is the ongoing process of diagnosis oppressive or empowering?
definition), if appropriate Is self-management burdensome or an expression of autonomy?
Diagnostic process and certainty
sense-making and uncertainty
Self-management and management of self
Fear for the future and death as the only certainty
Data Analysis Inclusion in an NVivo managed dataset allowed in-case and across-case analysis
First Author (Year)/Qualifications Galushko, M., Golla, H., Strupp, J., Karbach, U., Kaiser, C., Ernstmann, N., Pfaff, H., Ostgathe,
C., & Voltz, R. (2014). Unmet needs of patients feeling severely affected by multiple sclerosis in
Germany: a qualitative study. Journal of Palliative Medicine, 17(3), 274-281. doi:
10.1089/jpm.2013.0497
Background/Problem Statement The needs of patients diagnosed with MS have not been thoroughly researched, however this is
information that is necessary to provide more quality care and adding palliative services where
beneficial
The study focuses on the unmet needs of patients severely affected by MS
Sample/ Setting/Ethical 15 patients- 5 of these patients chose to be accompanied by a caregiver whose contributions
Considerations were included in the data analysis.
Interviews were carried out at home and on the neurology unit
Convenience sampling
o Inclusion criteria: any patient with MS willing to participate
Informed written consent was obtained and ethical approval was granted by the University
Hospital of Cologne
Major Variables Studied (and their The unmet needs of patients with MS
definition), if appropriate
Measurement Tool/Data Collection Episodic face-to-face interviews allowing discussion and focus on certain topics
Method All interviews were recorded and transcribed word for word.
Interviews ranged from 25 minutes-2 hours
Sociodemographic and disease specific information was collected using a questionnaire which
included a scale to rate the extent of feeling severely affected by MS
o Palliative care
Findings/Discussion The unmet needs of patients were divided into four categories
o Support from family and friends
Majority of patients friendship circles decreased, some had romantic
relationships deteriorate, six people wished their support system received
education and counseling to better understand the illness
o Health care services: largest category of unmet needs
Lack of home health visits
Lack of handicap accessibility
Lack of neurologists that are well trained in treating MS or keep up to date on
current treatments
Want discussions of palliative care
Need for psychotherapy
All of the patients wish for treatments that truly help with their disease process
or cure the illness
Ways of financing to make their home and travel handicap accessible
o Managing everyday life
Help around the home and to be able to get around their own home
o Biographical continuity
Want to be able to work again
Hobbies or ways to enjoy leisure activity as they did prior to their illness
Need for accepting their new self and regain happiness and confidence
Not wanting to be excluded from activities, but to also be accepted by the
public and free from embarrassment
Public places need to be more handicap accessible
First Author Strickland, K., Worth, A., & Kennedy, C. (2016). The liminal self in people with multiple sclerosis: an
(Year)/Qualifications interpretative phenomenological exploration of being diagnosed. Journal of Clinical Nursing, 26, 1714-1724.
doi: 1111/jocn.13593
Background/Problem The diagnosis of MS alters one’s view of self which has harsh consequences
Statement The purpose is to delve into the experience of being newly diagnosed and identify the participants
sense of self
Measurement Tool/Data An easy-going interview guide was developed covering topic areas to ease the conversation which was
Collection Method facilitated by the participant
o Open-ended questions
o Digitally recorded and transcribed verbatim
Findings/Discussion Three main themes were identified and all shared the subtheme “impact on the self”
o “Road to diagnosis”
Each participant gave detail on the events leading up to diagnosis as well as the actual
diagnosis
Symptoms described
Some felt relief from diagnosis, others expressed worry, and others felt validated that they
symptoms were “real” and they weren’t psychological
o “The liminal self”
Interruption with sense of self
Acknowledge irreversible state of illness
Unpleasant change
Not invincible
o Facing reality
Difficulty maintaining former familial roles or roles in the workplace
Mom’s felt their image as a mother was hindered
o “Learning to live with MS: an uncertain future”
Lack of understanding from the support person
Waves of extreme fatigue was reported from all participants
Difficulty functioning in daily life
Threat of further deterioration
Overwhelming uncertainty of what their disease process will look like as far as speed of
progression and symptoms experienced