A Qualitative Study on Lupus Patients (2)

Running Head: LUPUS PERCEPTIONS

Qualitative Study on Lupus Patients’ Perceptions of Current Medication and Treatment

Regimens

Jessica Altice, MAEd.

The University of Alabama at Birmingham

EPR 696: Qualitative Research Methods: Inquiry and Analysis

May 1, 2012

LUPUS PERCEPTIONS 2

Table of Contents

Introduction...……………………………………………………………………………....4

Methods……………………………………………...…………………………..………….6

Qualitative Research Approach…...……………………………………………….6

Tradition of Qualitative Inquiry……………………………………………………...6

Philosophical Assumptions………………………………………………………….7

Sampling…………..……………………………………………………………........8

Data Collection………………………………………………………………………..9

Data Analysis………………………………………………………………………...10

Establishing Credibility………………………………………………………………11

Ethical Considerations……………………………………………………………....12

Role of Researcher…………………………………………………………………..12

Findings………………………………………………………………………………………13

Setting/Context……………………………………………………………………....13

Participants……………………………………………………………………………16

Themes and Sub Themes….……………………..…………………………………18

Essence of the Experience………………………………………………………….32

LUPUS PERCEPTIONS 3

Discussion……………………………………………………………………………………32

Major Findings………………………………………………………………………...32

Addressing Research Questions…..……………………………………………….33

Limitations……………………………………………………………………………..35

Implications for Practice………………………………………………………………35

Recommendations for Future Research……………………………………………36

References…………………………………………………………………………………..38

Appendix A: Recruitment Letter….……………………………………………………..41

Appendix B: Informed Consent Document……………………………………………42

Appendix C: Interview Protocol …………………………………………………………44

Appendix D: Table of Themes, Sub-themes, and Codes……………………………47

LUPUS PERCEPTIONS 4

A Qualitative Study on Lupus Patients’ Perceptions of Current Medication and

Treatment Regimens

Lupus is a chronic autoimmune disease that causes the body to produce

antibodies that cause tissue damage and inflammation (Centers for Disease Control,

2010). It was noted that as of 2005, there are 161,000 definite cases of SLE and

322,000 people with probable SLE (Helmick et al., 2008). Accelerated atherosclerosis

has been linked to premature mortality among lupus patients and other primary causes

of death are active disease, organ failure and infection. Medication compliance is often

an issue because lupus affects women of childbearing age and the treatment for the

disease includes the use of strong immunosuppressant’s which produce adverse side

effects which can make conceiving difficult (Centers for Disease Control, 2010).

Effective patient education programs could increase medication compliance which could

in turn decrease morbidity, mortality, and disease progression (Seltzer, Roncari &

Garfinkel, 1980; Saounatsou et al., 2002). After an extensive literature search, I have

been able to locate one lupus education program in the Birmingham area that was

conducted at the University of Alabama at Birmingham but was discontinued because of

decreased funding.

LUPUS PERCEPTIONS 5

Instead of attending educational programs patients are referred to online

materials and pamphlets. Pamphlets and online resources for rheumatology patients

are sometimes above their level of understanding. Research has shown that most

patients read on a sixth grade level but the majority of health education material is

between the 11th and 16th grade reading level (Hirsh & Gardner, 2009).

Multitudes of research have been conducted on the underlying causes,

predictors of early mortality, and disparities in care and disease progression. Some

studies have shown a small association between cigarette smoking and Lupus

(Costenbader et al., 2004; Ghaussy, Sibbitt, & Qualls, 2001; Miot, Miot & Haddad 2005).

Previous studies have also evaluated the effects socioeconomic status (SES); medical

insurance and education level have on SLE. One study (Ward, 2007) concluded that

progression to end stage renal disease was associated with type of insurance.

Additionally, prior research noted that in Caucasians, mortality increased in individuals

with a lower education level (Ward, 2004).

Amid all of the research available, there seems to be one gap in the literature:

evaluation of education programs. Effective education programs should provide

information on disease management, medication compliance, and how to emotionally

handle disease diagnosis.

I believe a vast amount of information can be learned from a qualitative study

examining lupus patients’ perceptions about their current treatment regimen, how it can

be improved, and how they feel about educational programs.

The purpose of this qualitative research project is to explore lupus patients’

perceptions about their current medication and treatment regimen and their feelings

LUPUS PERCEPTIONS 6

about educational programs. The central research question of this qualitative inquiry is

the following: How do patients perceive their current treatment regimen? The sub

questions are the following: 1) How do lupus patients feel about the healthcare

information they are given, 2) How do lupus patients perceive the care they receive and

3) How do lupus patients feel about educational programs?

Methods

Qualitative Research Approach

The purpose of qualitative research is gain information on human perception and

understanding (Stake, 2010). Qualitative research seeks to find the ‘why’ of the topic.

This definition is why I have chosen to complete a qualitative study. It is my belief that

when you are aiming to educate people about a healthy lifestyle, we must first learn

about the person and how receptive they will be to the proposed intervention. I chose

to use qualitative research for this study because I wanted to gain an understanding of

lupus patients’ perceptions about their current treatment regimen, how it can be

improved, and how they feel about educational programs. The purpose of this

qualitative research is to explore lupus patients’ perceptions about their medication and

treatment regimen in the Southeast U.S. Additionally; I know how difficult it is to

sometimes manage a disease that can result in ancillary diseases such as arthritis,

cancer, or other infectious diseases. With this knowledge, I chose to interview patients

that had received their diagnosis at least a year ago.

Tradition of Qualitative Inquiry

The phenomenological approach was the tradition I chose to use for this pilot

study. Phenomenology was heavily formed by the work of Husserl and it was later

LUPUS PERCEPTIONS 7

expanded by Heidegger, Sartre, and Merleau-Ponty. Phenomenology is most common

in psychology, sociology, education, nursing, and the health sciences. The four

philosophical perspectives of phenomenology are: a return to the traditional tasks of

philosophy, a philosophy without presuppositions, the intentionality of consciousness,

and the refusal of the subject-object dichotomy (Creswell, 2007).

Phenomenological research seeks to describe the lived experiences of a

phenomenon of several individuals. The goal is to explain the similarities of the

participants and to ultimately be able to describe the nature of the phenomenon. The

phenomena being researched can be any type of human experience. The researcher

collects data and compiles a description that describes “what” they have experienced

and “how” they have experienced it (Creswell, 2007).

This approach works best for my research because the phenomenon that all

participants experience is “living with lupus.” I was searching for how these patients felt

about their current treatment and medication regimen. I wanted to know how they

perceived their physicians, treatment plans, availability of resources, and education

programs.

Philosophical Assumptions

In conducting qualitative research, the researcher makes certain assumptions.

The five philosophical assumptions are ontological, epistemological, axiological,

rhetorical, and methodological. The researchers’ stance on the assumptions will further

assist the researcher in developing their paradigm position (Creswell, 2007). The

assumption ontology focuses on the nature of reality, epistemology is related to the

relationship between the researcher and what is being researched, axiology is meant to

LUPUS PERCEPTIONS 8

assess the role of values in the research, rhetoric involves the language of the research,

and finally methodology. A paradigm is a set of beliefs that guide your actions

(Creswell, 2007). According to Creswell, there are only four research paradigms:

postpositivism, constructivism, advocacy/participatory, and pragmatism (2007).

The paradigm that best fits my study is the advocacy/participatory paradigm. The

basis of this paradigm is that the research should work towards a reform that could

possibly change the participant’s lives, the communities they live or work in, and even

sometimes the lives of the researcher. In this paradigm, the researcher is generally

exploring problems like oppression, alienation, suppression, or domination. As the

research is conducted, the researcher gives a voice to participants (Creswell, 2007).

The goal of my research is to develop the pilot study into a larger research study that

will allow me to advocate for changes in disease management for lupus patients. My

profession is based upon being an advocate for individuals suffering from illnesses. The

profession believes that because of the knowledge we have attained we have a duty to

better the health of all individuals.

Sampling

As noted in Creswell (2007) phenomenological studies generally consist of 5 to

25 participants that have all experienced the phenomenon. Phenomenological studies

have a more narrow range of sampling strategies when compared to other types of

qualitative research. It is essential that all individuals have experienced the

phenomenon. This pilot study was conducted utilizing purposeful convenience sampling

and snowball sampling. This type of sampling is useful when the researcher is looking

LUPUS PERCEPTIONS 9

to save time, money, or effort (Lincoln & Guba, 1985). This fact was definitely the case

in this study given the time constraints of the course.

The researcher initially attempted to recruit participants from the Lupus Clinic at a

large hospital in the Southeast United States. Her attempts were unsuccessful therefore

Plan B was instituted. The researcher called a woman from her hometown that she

knew had lupus and this woman in turn recommended three other individuals who might

be interested in participating.

Data Collection

Data was collected by individual interviews that ranged from 15-40 minutes. The

researcher used a semi-structured interview protocol that was developed prior to the

interviewing process beginning. The interview protocol was developed with the central

focus of the questions revolving around the central phenomenon. Creswell mentions in

his writings that although it may be sound practice to audiotape your interviews, taking

notes in the event that the equipment malfunctions is a good practice (Creswell, 2008).

As a precaution, the researcher wrote notes during the interview.

Interviews began with the researcher getting the consent document signed,

giving a brief overview of the research project, and explaining the interview process.

The researcher let the participants know why she was recording the interview and

clarified that each participant would receive a pseudonym which would be used in the

right up of the research. She asked if they had a preference for the pseudonym and all

four women responded that it did not matter what their pseudonym was.

The first question was an “ice breaker.” This was done to put the participant at

ease. The ice breaker question also later provided valuable information for the

LUPUS PERCEPTIONS 10

researcher. The site for the interview changed according to where the participant felt the

most comfortable. The interviews were conducted by asking the participants 4 open

ended questions. Probing questions were also asked at the discretion of the researcher

when appropriate. The probing questions allowed for the researcher to gather more

detailed information and steer the participant in the right direction if they did not fully

understand the question. Field notes were taken that provided descriptions of the

setting, facial expressions, body language, and anything else the researcher deemed

important. At the end of the interview, the participant was thanked for their time and

honest opinions. These interviews were transcribed from the recording of the interview

and coded.

Data Analysis

Generally all qualitative analysis is conducted in the same manner. The

researcher prepares and organizes the data, compiles the data into themes, and

presents the data in tables and figures. There will be some slight differences depending

upon the type of qualitative inquiry the researcher is conducting. In qualitative research,

data analysis is not conducted in a linear fashion. Data collection, analysis, and

reporting occur simultaneously.

After each interview, the audio tape was transcribed and the field notes were re-written

in a manner that was legible and coincided with the interview. I used an inductive

approach to analyzing the data because I went from the detailed transcripts recorded

from the interviews to general codes and themes. After several hours of reading and

coding, codes were found which helped me further expand the themes and sub-themes.

The transcripts were re-read because the researcher knew the continued reading of the


data would provide a deeper understanding of what the participants were saying.

Finally, after extensive coding, I met with my colleague to review and agree upon the

different codes and themes to meet the requirement of the inter-coder agreement. We

felt as though the themes we identified were important to the focus of the study as it

related to the central phenomenon of examining how lupus patients felt about their

treatment and medication plans. These themes assisted the researcher in focusing and

conceptualizing data as well as organizing data so that they would be malleable (Morse

& Richards, 2002).

Establishing Credibility

It is recommended that no fewer than 3 verification strategies are used to

establish credibility and trustworthiness (Creswell, 2007). With this is mind, I have

chosen to use thick, rich descriptions; inter code agreement, and peer review. These

tree types of verification strategies seem to fit well given the time constraints of this

project and only one investigator being involved in the study.

I utilized inter-code agreement as a way to establish credibility. Inter-coder

agreement occurs when members of the research team independently code all the

transcripts, compare the codes, and resolve any discrepancies. Since there was only

one investigator conducting the interviews this was achieved with assistance from a

colleague whom individually completed coding of the transcribed data collected from the

interviews. We coded the transcribed data to see if we established the same codes

during the process of coding. Miles and Herman recommend that the consistency be in

the agreement at least 80% of the time for good qualitative reliability (Creswell, 2009).


Validity is important in qualitative research because it determines the accuracy of

findings of researcher, participant, or readers of an account (Creswell & Miller, 2000).

Peer review is effective because it allows for an external check of the research

process. It allows for outside experts to question the methods, meanings, and

interpretations (Creswell, 2009). The framework and results of this research were

reviewed by a colleague. It was their responsibility to review the research collection

techniques, the transcript and codes, and confirm themes.

Ethical Considerations

Generally, all research should be conducted in accordance to the American

Psychological Associations (APA) Ethics Code. This would involve obtaining institutional

approval, providing informed consent, having procedures to protect participants who

decide not to participate or withdraw from the study, avoiding the use of excessive

incentives, having study results available for the participants if they choose, reporting

accurate data, and avoiding plagiarism (APA, 2011). This research was exempt from

IRB approval because it is being conducted for educational purposes only but measures

were taken to protect the patients’ confidentiality and to make sure they were not

coerced into participation.

Potential participants were approached by the investigator and were told the

details of the study. The potential participants were given the recruitment letter by email

which included information about confidentiality, contact email for the investigator, and

their role in the research. The participants’ names were not mentioned in the paper and

each participant was assigned a pseudonym. The document linking the participants’


name with their pseudonym was kept on a password protected computer. There were

no paper copies of the above mentioned document.

Role of the Researcher

Qualitative research is interpretive research and the researcher takes a very

active role in data collection and analysis. The researcher is responsible for gaining

access to the site, conducting interviews or observations, gaining permission from the

Institutional Review Board, provide information to reader about connections to site or

reasons for bias, and provide information about how ethical issues will be addressed

(Creswell, 2009).

In instances where researchers are immersed in the culture or observations

occur over a period of time; there can be an evolution of the relationship between the

participant and researcher (Jones, Torres, & Aminio, 2006). Considering the time

constraints of the course, the investigator did not have time to develop a personal

relationship with the participants. The participants’ total involvement in the study was

completion of the interview.

The researcher is a research assistant at a large university in the Southeast. She

has a Master’s of Arts Degree in Health Education which has given her experience in

barriers and facilitators that individuals experience when dealing with a painful chronic

illness. She has been exposed to lupus for most of her life. She has two aunts that

suffer from the illness; her roommates’ friend died from complications associated with

lupus; and the mother of her childhood friend has the disease as well. Having a health

education background, the researcher had to make a conscious effort to not offer advice

during the interviews.


Findings

Setting/Context

The researcher initially planned to recruit participants from the Lupus Clinic at a

large hospital in the Southeast United States. In order to complete the research project,

the researcher contacted a woman from her hometown that she knew had lupus and

this woman in turn recommended two other individuals who might be interested in

participating. The fourth participant was identified by a colleague of the researcher. The

research focused on the participants’ perception of their treatment regimens and lupus

education programs. In particular, the researcher sought to understand the

mechanisms through which lupus patients receive health education, are they receptive

to health education programs, and if they are satisfied with their current treatment. To

explore the central phenomenon, it was important to focus on patients who had been

living with lupus for at least 1 year. The researcher felt that patients who have been

diagnosed recently would not have enough experience in dealing with the disease.

Since the researcher had a limited amount of time to conduct the research,

convenience and snowball sampling had to be utilized. Because of the nature of the

interviews and the fact that participants were dispersed in various parts of the Southern

United States, the setting changed with each participant. The setting was not the setting

the researcher originally planned on but the new settings may have enhanced the

research. When conducting research in the health education field, it is imperative that

participants feel completely comfortable and are willing to discuss private and

sometimes sensitive health problems. The researcher met participants in locations that

were convenient for them which probably put them at ease during the interview. It is


possible that by conducting the interviews in a location of the participant’s choice, the

participants spoke more freely about their illness.

Participant 1 (Jackie) chose to have the researcher come to her home. The large

two level home was beautifully decorated. The researcher entered through the wooden

and glass double doors to a foyer with a glass chandelier and hardwood floors. The

sunlight came through the windows and danced off the chandelier creating reflections

on the ceiling and crème colored walls. She escorted the researcher through the living

room and into the modern, brightly colored kitchen. The participant and researcher sat

at a round, glass table that was accentuated by four comfortable chairs decorated with

butterflies and fireflies. The participant seemed quite relaxed in her own home and was

excited to speak to the researcher.

Participants 2 and 3 (Sharon and Katherine) both worked in the same elementary

school in the Southern United States. They previously gained approval for the

researcher to interview them during their free periods. The principal allowed the

researcher to conduct the interviews in her office. The elementary school was nestled in

the middle of a neighborhood and the grounds were covered with oak trees that seemed

to provide a protective shade for everyone within. As the researcher walked through the

blue double doors she saw trophy cases and children’s artwork line the entryway. The

main office was located directly to the left and the principals’ office was hidden behind

the receptionist’s area. The principal’s office had a large window on the back wall that

looked out into the parking lot. The early morning sunlight shone through the window

and provided additional warmth to the room. Two, blue leather chairs were situated at

an angle facing the desk and provided the perfect space for the interview.


Participant 4, Anastasia, asked me to come to her office to conduct the interview.

I walked into a marvelously decorated office befitting a university vice president. The

walls were lined with pictures of her world travels and her desk was adorned with

photographs of her children and siblings. An enormous book shelf took up the entire

wall behind her desk. Perfectly situated on the shelves were textbooks, red flowers,

elephants, decorative vases, and black 3-ring binders. Anastasia comfortably sat in an

oversized burgundy leather chair looking as if she could conquer the world. It was rather

surprising to find her office did not have any windows. At most companies, people vie

for the “corner office with a window.” When an individual has a window, they know they

have “arrived.” In this instance, I am certain her lack of a miraculous view of campus

was no indicator of her status or importance at the university. On the opposite side of

Anastasia’s desk were two smaller burgundy leather chairs that were squarely in line

with the ends of her desk.

Participants

To explore the central phenomenon as it is related to lupus, participants were

asked to complete an in person interview. Four lupus patients were identified for

participation in this research project and all four agreed to participate in the research

project. Prior to the interview, participants were given a recruitment letter that explained

the purpose, time commitment, and confidentiality of the research project.

Jackie is a 55 year old African American woman who was diagnosed with lupus

31 years ago in her mid twenties. She has been married for 35 years and has two

children. Her symptoms began to manifest after the birth of her second child. It took

physicians 2 ½ years to diagnose her lupus and she actually received the diagnosis


from an orthopedic physician. She used to run a home daycare but is not able to work

now because of her frequent flares. She has systemic lupus erythematosus and it

mainly affects her joints and in recent years, it has made her more susceptible to other

illnesses. Because of the severity of her illness, she has seven physicians in total.

Jackie has had two knee replacements, several broken bones, occurrences of cancer in

various parts of her body, and was recently diagnosed with shogren’s syndrome. She

stated that she has been very fortunate and many people with lupus are not as lucky as

she is. She has had her share of hard times with her lupus but she is blessed because

she has a husband who is able to provide for their family. Jackie has not worked for

several years but she has never had to worry about paying the bills or being able to

afford her treatments. The one thing she wants newly diagnosed patients to know is that

lupus is not a death sentence.

Katherine is an African American woman in her mid-50’s that received her

diagnosis at the age of 21. She is married with three children and has been working in

education since she graduated from college. Her symptoms began to occur when she

was in college in which she experienced arthritis and a rash on her face. She was finally

diagnosed with cutaneous lupus erythematosus which only affects the skin. Katherine

proclaims that she has the easy form of lupus. She calls her form less severe because it

does not affect any of her organs. Katherine has not had to alter her life as much as

people with the systemic form of lupus. When she was initially diagnosed, she did not

take her medication as she was supposed to. In the last twenty years, her lupus has

been better managed because she now realizes the importance of following her

medication regimen.


Sharon is an African American woman in her mid-40’s and she has been living

with lupus for 13 years. She has two children and works at an elementary school as an

aide. She had symptoms for five years before physicians were able to give her a

diagnosis. Sharon has systemic lupus erythematosus with the majority of her problems

occurring with her joints. She is very involved in the Lupus Support Network and Lupus

Foundation and she has even served as a facilitator for local support groups. Lupus has

caused Sharon to have seizures, a heart attack, and fibromyalgia.

Anastasia is a 41 year old African American woman who was diagnosed with

systemic lupus erythematosus when she was 35 years old. She is divorced with two

children and works at a large university in the Southeast as a vice president. To data,

she has not had many ancillary problems associated with lupus. She does recognize

her case of lupus is not as severe as some others and she is grateful for that. Her hectic

work schedule does make maintaining her disease more difficult than the other

participants but she remains diligent in her care.

Themes and Subthemes

The interviews were transcribed verbatim and codes were identified which formed the

development of the themes and subthemes. The purpose of this study was to examine

lupus patients’ perceptions of their medication and treatment regimen. All of the themes

identified are relevant to the central phenomenon. The first theme identified was level of

care received and the subthemes were past care and current care. The second theme

identified was optimism about the future. The third theme focused on the view of lupus

education. The fourth theme centered on the experience of living with lupus.


Level of Care Received. During the interviews, the participants all expressed

how they felt about the care they received from their primary care physician and

rheumatologist. All four participants have been living with lupus for some time but it

ranged from 10-31 years. Because of the age of diagnosis and time spent living with the

disease, each participant had their own perception of the care they have received and

continue to receive. Out of this theme emerged two subthemes; past care and current

care.

Past Care. The icebreaker led Jackie to recall how she received her lupus

diagnosis. Jackie has been living with lupus for 31 years and was initially diagnosed in

1981 by an orthopedic specialist. As she remembers the 2 ½ year process she went

through before she received her diagnosis, I can see the sincerity in her eyes. She

looks off through the floor to ceiling window in her modern kitchen decorated with

butterflies and dragonflies as if she is trying to remember exactly how she has gotten to

this point in her life. She explains that “I was referred to, umm, several doctors and

believe it or not they were supposed to be excellent doctors that could treat lupus but

they weren’t.” Jackie was at a loss because she did not feel as though she was getting

the kind of care she needed.

She went back to her primary care physician who referred her to a

rheumatologist at a local university hospital. As she speaks about him her eyes light up

and a grin sneaks across her face as she states “It just feels like God sent an angel.”

Before her office visit, Jackie looked across the waiting room at women of all ages and

ethnicities. Her rheumatologist later explained that he treated all of his lupus patients on

the same day and he wanted to let her know that she was not alone. As she remembers


this moment in time, she is still smiling. She stated “I just cried because it made me feel

really good to know that I wasn’t alone.” Then she ends by telling me “He started me on

a treatment and it saved my life. He really saved my life.” She explains how thorough he

was and that he wanted her to know everything about lupus, even the origins of the

disease. This demonstrated that even though Jackie may have experienced some

tribulations in the past, there was one amazing doctor whom she refers to as an angel.

He put her mind at ease about her illness and showed her that lupus is not a death

sentence.

Current Care. Katherine has been living with lupus since she was 21years old

and her primary care is handled by a rheumatologist. She stated that she has been

seeing the same rheumatologist for 30 years and she chuckled and smiled as she said

“we’ve grown up together.” Katherine stated that “I have the simple kind of lupus”

because it does not affect any of her organs, it just affects her skin. Because of the less

serious nature of her lupus, she only has a rheumatologist and primary care physician. I

can tell that she has complete confidence in her physicians. When asked if she seeks

out additional information on lupus, she responded no. She elaborated in saying that

“Since I am so comfortable with him, if there’s anything I need, I just call his office.”

Sharon was diagnosed thirteen years ago but experienced symptoms for five

years before she officially received the diagnosis. Her primary care physician handles

most of her care but she has a rheumatologist and physician for pain management as

well. During the interview she seemed a little timid and during certain moments, I could

hear a crackle in her voice. When talking about her primary care doctor Sharon

explained that “He printed out information for me during the visit. It was easy to


understand but scary.” When asked about current care she states “Its good care, very

good care. I can call in and ask questions.”

Sharon is very pleased with her primary care doctor but she recently had an

issue with her doctor for her pain management. With a hurt expression on her face,

Sharon recalls a time when a change in physicians adversely affected her health.

Sharon had to change pain management physicians four months before the interview

because of a change in her insurance. Before the change, her lupus was very well

controlled. Then her new physician wanted to put her on a new medication that was

supposed to treat her fibromyalgia and lupus. With her voice cracking, she said “It

messed my whole system up. For two days I was in so much pain, I didn’t know where I

was. The pain was off the charts.” After this incidence, her general practitioner put her

back on her previous medications but she is still recovering from the effects. At the time

of the interview, it was only the second week she was able to work the entire week.

Right after the episode, she could only work for a few days and would have to spend a

week at home to rest and recuperate. She lost about 60 pounds during that time but is

gradually gaining weight through the use of steroids. She has not returned to the pain

management physician since she was hospitalized. This occurrence was quite

interesting because it is a prime example of the harmful effects to the patient when

physicians do not communicate. When a patient has a multi faceted chronic illness like

lupus it is imperative that all providers are on one accord. Because one physician

decided to change Sharon’s medication that was prescribed by her primary physician,

she was hospitalized and had to take numerous days off work.


Anastasia has been seeing the same rheumatologist since she was diagnosed

six years ago. She has been with the same primary care physician for fifteen years. She

is very pleased with the care she has been given from both physicians. Her job keeps

her traveling constantly therefore it is of the utmost importance she have a good

working relationship with her health care providers. She looks across the desk at me, in

her power suit, and sincerely stated that “Anytime I am on the road, I can get what I

need. The nurse always calls back quickly and will call my prescriptions in to whatever

pharmacy I am near.” Anastasia can never recall a time when she has had to call her

physician more than once. She said “I will keep using my doctors until they stop

practicing. Because of my busy schedule, I have to make sure I control my stress; eat

right; and exercise. My doctors are really helpful with keeping me healthy.” She looked

at me with understanding and seriousness in her eyes and explained “I have to be

healthy. Being unhealthy may kill me.”

Katherine and Anastasia seem to be very pleased with their current level of care.

They did not have one bad thing to say about any of their physicians and they rely on

them as their primary sources of information. Sharon did have an issue with one

physician but is otherwise satisfied with her providers. She is in the process of

searching for a new physician to handle her fibromyalgia.

Optimism about the Future. Throughout the interviews, three of the participants

seemed hopeful about the future regardless of the problems and setbacks they have

encountered. Sometimes, when people suffer from a chronic illness they can fall into a

deep depression or feel like their quality of life is so poor they do not have a future. All


of the women expressed an initial shock to the diagnosis but have since come to terms

with their illness.

Jackie looks down at her feet as she tells me “When they first told me I had

lupus, I didn’t know what to say. It felt like the world crashed in on me and I cried for

days.” She shakes her head back and forth as she said she only thought about her

children in that moment. Jackie felt this way until she had an appointment with her first

rheumatologist. This physician demonstrated to her that she would have a life after this

diagnosis. He expressed that women and men of all ages and races have lupus and

that all the patients in his waiting room were proof that she could too live a full life even

with this diagnosis.

Jackie has a strong will and is not discouraged by her health problems. During

this moment of the interview she was perhaps the most sincere she had been. She

softly stated “I will have lupus for the rest of my life so I will live my life as much as I

can.” She explains how some of her family members chastise her for being involved in

numerous activities and keeping her social calendar full. She gently replies to their

concerns by saying “When I have good days, I want to live. Lupus is not going away

and I will not let it get me down.” Jackie mentioned that now, she has more bad days

than good days and that is all the more reason to explore the world when she has those

good days. During this point, she thanked me for the work I am doing. She looks

concerned when she exclaims “Many doctors can treat the symptoms of lupus but they

are not knowledgeable about lupus.” She mentions that all the research that is

conducted helps the healthcare community reach the finish line. She grinned from ear to

ear stating “There may not be a cure for lupus in my lifetime but there will be one. I pray


that no one else has to endure what I have had to endure.” At this moment, I realized

that Jackie is very in tune with how life for her will be but she is hopeful of a future

where there is a cure for lupus.

Katherine was the most optimistic participant I interviewed. She recalls that she

was initially in denial about her diagnosis. “I was young. I was 21 so I did not care what

the doctors said. I didn’t take my medicine and I didn’t go to my appointments.”

Katherine explains her feelings as most young people do. When people are young, they

have the tendency to believe they are invincible. Young people are reckless and do not

have much regard for their lives. This attitude is evident in the literature which displays

accidental injury and death is most common in children and young adults. Over the

years, Katherine has become more responsible by taking her medication on time and

following up with her rheumatologist every three months for lab work. Now that she is

older, she understands how important it is to stay healthy and how mild her form of

lupus is.

As Katherine frequently says, she has the easy form of lupus. She also

mentioned while looking over my head to a picture of children in a golden frame that

“she was truly blessed.” By only affecting her skin, she has not had to bear multiple

days off work, numerous hospitalizations, harmful treatment plans, or severe ancillary

problems. She pointed out, “Lupus hasn’t changed my life that much.” She gets excited

and sits straight up in her chair as she details “I have seen my children graduate high

school, I will be there when they get married, and I will get to spoil my grandchildren.” It

is apparent that Katherine plans on living for many years and she will not let lupus affect

her quality of life.


Anastasia had quite a different experience when she received her initial

diagnosis. She declare “I walked into the office hoping I would go home know what was

wrong with me but I never expected it was lupus.” Anastasia’s voice started to trail off

and I asked her to repeat herself. She gently shook her head as if she was waking

herself up from a daydream. She persisted, “I was in shock. I had never known anyone

with lupus. My family has a history of cancer and both my parents died from it but no

one ever had lupus.” She looks steadfast when she tells me that she did not cry and

that she was a little relieved that it wasn’t cancer. Anastasia looked at me and clearly

stated “Cancer kills you quick. Sometimes you don’t even have time to process it and

you are gone.” While we talk, I hear the strength and determination in her voice. She

explains that she has had many obstacles in her life, getting married and having a child

at 19; raising a family while finishing her degree and working part time and navigating

through a profession where her age and gender were disadvantages. She clearly stated

that lupus was just another obstacle that could be tackled and she seemed proud of

herself like she was reassuring herself while speaking with me.

Even though her job keeps her living out of a suitcase at certain times of the

year, she does not let that affect her health. Her doctors know her unique situation and

are very supportive in keeping her on track. She knows how important it is for her to

maintain a healthy lifestyle in order to reduce flares. She is adamant when she tells me

“I have had flares before and I hate them. I can’t do my job and I have to stay at home. I

hate not being busy. It kills me to sit at home and watch tv when I could be doing

something productive. Anastasia is one of those individuals that is driven to succeed

and being sick does not fit into her game plan.


When I asked her where her determination comes from, she gently placed both

her hands on her oak desk and affirmed, “I am a fighter. I do not give up. That is the

way my parents raised me.” She goes on to clarify that her illness does not and will not

define her. She tells me that lupus is only one portion of her life and there are many

more parts of her life that do define her and the person she wants to be.

View of Lupus Education. The women had varying opinions of lupus education

programs. As previously mentioned, their differing opinions could be due to age at

diagnosis and how long they have lived with the disease. Lupus education as it is today

is not that same as it was 30 years ago. The participant that has been living the longest

with lupus was Jackie.

Jackie recalls how “there was a lot of miscommunication” in the early years

between her doctors. She attributed this to the fact that many doctors were not

educated about lupus and its effects. They knew how to treat the symptoms of lupus but

they had no idea how all the pieces fit together. Because of the miscommunication and

inconsistency, Jackie received the majority of her information from her rheumatologist

and hours spent in the library. At the time of her diagnosis, the internet was not an

option for gathering information therefore she had to learn about lupus in the traditional

ways. She told me that “I wanted to know everything. I had to go out and seek

information.” She spoke about attending a support group right after her diagnosis but

she didn’t need the social support, she only went to gather more information about

lupus. Even today, she keeps up with the literature on clinical trials and developments in

determining the cause of lupus.


She confidently states, “Once we know the cause, a cure is right around the

corner.” Jackie continues to tell me there are not any educational programs in her area

and she feels like that is a problem. Next, she reveals an interesting fact to me. She

explained that 9 out of 10 lupus patients get cancer at some point in their lifetime. She

details that this is something people with lupus needs to know. Even though she

expressed the importance of lupus education, she exclaims she probably would not

attend programs if they were available. She explained, “People can’t tell me how to live

with the disease if they have never had it. I have lived with it for 30 years. I can tell

people how to manage.”

Sharon was the participant who was most involved in lupus education. She

initially received information from her physician. He gave her pamphlets, other

materials, and recommended place she could find additional information. She took this

one step further and got involved in the Lupus Support Network. When I asked if there

were education programs in the area she sadly said “No there is not. We need to do a

better job.” She told me she is a county facilitator for the lupus support network but none

of the support groups are held in her hometown. She has to travel an hour to attend the

groups. She was quite animated when she mentioned the lupus seminar that was taking

place at the university the next day and she had hoped she could attend but could not

because of all the time she missed from work because of her recent hospital stay.

In the past, Sharon has participated in clinical studies and would attend any

educational sessions that were available. She seemed very open to hearing what

professionals and other lupus patients had to say about the disease. She is also a


member of the Lupus Foundation of America but the closest office to her is 3 ½ hours

away and they have yet to expand programming to her area.

When asked if she ever seeks out information, Katherine expressed, “I have no

need for other education. My doctor tells me everything I need to know.” This statement

again demonstrates the level of confidence she has in her physician and how

comfortable with him she is. She believes he will let her know of new developments or

treatments. She does later state that “Education is important but I don’t think my lupus is

that severe.” Her view on the severity of her lupus is the biggest reason why she does

not think lupus education programs are relative to her. This feeling is commonly seen in

the health education field. She then comments how the other teacher at her school

distributes material on lupus to the staff and students so they are well informed. She

said she might attend programming if it was available in her area.

Anastasia was the participant who has been living with lupus the least amount of

time. She also receives most of her information from her rheumatologist and the

internet. She talked about the good relationship they have and how she is very

comfortable with him. Anastasia turned slightly in her chair and expressed how her work

does not keep her in one place for long, “I have very little time at home and a lot of other

activities.” At this point, she relies mostly on her physician to keep her informed of

anything new that may be of interest to her. She does search the internet every few

months to see if there is any new research or clinical trials.

Like the other participants, there are not any lupus education programs near her

home. When asked if she would attend programs if they were available she

commented, “Maybe when my life slows down. Right now, I don’t know if I would have


the time between everything else I have going on.” She does not feel like she has had

enough problems associated with the lupus to warrant seeking additional information.

Experience of Living with Lupus.

In the short amount of time that Sharon has lived with lupus, she has had many

ancillary problems caused by the lupus. She has had seizures and a heart attack. She

has had to take multiple days off work because of her illness. She looks relieved when

she stated “I am fortunate. My principal understands what I go through with the lupus.

She is always willing to help and is understanding.” Sharon knows that many people do

not have this type of work situation. She tells me how she has heard stories of people

that have lost their jobs because they miss so many days from work.

Sharon has a look of disgust in her eyes when she recalls her experience with

her insurance company. She was previously taking chemotherapy treatments to control

her lupus. She declares, “this was the best I had ever felt.” Sharon was experiencing

great results with the chemotherapy in which she would have a round of treatment every

six months for eight hours. Then, her school system decided to change insurance

providers and her new insurance company would not pay for the chemotherapy. Her

treatment had to change. She shook her head in dismay and exclaimed, “I take thirteen

pills every night and it doesn’t work as well as the chemo.” It is disheartening to see that

insurance dictates the level of care people can receive. It seems almost cruel to remove

someone from a treatment plan that is working and place them on a less effective

treatment regimen but this occurs daily in the health care industry.

Jackie has spent the last 15 years of her life in and out of hospitals. She now has

a total of 7 doctors in two states. Her husband recently moved to the Northern United


States for a job but Jackie has remained in the South primarily because of her lupus.

Her rheumatologist told her the colder climate would be detrimental to health so she

should not move. When asked how she handles this separation, she simply responds “I

go up there during the spring and summer l and then I come back down South for the

fall and winter.” I then ask if she is preparing to leave soon. With disappointment on her

face she said, “No, my doctor said I can’t travel right now. They are trying to get my

shogrens syndrome under control before I go up there. But my husband was just here

for a week and he will be back next month.” She describes how they make it work

despite the distance. She comments on how difficult it is but it helps to have her family

with her. Her children, her mother and all of her siblings live in the same city so it makes

life a little bit easier for her. There is always someone willing to help in any way she

needs.

Because lupus is an autoimmune disease, it has made it easier for Jackie to

contract cancer. She has gone through chemotherapy and radiation several times. The

lupus has also caused her bones to become brittle therefore she experiences broken

bones regularly. She has also had two knee replacements and pins were place in her

shoulder and ankle. During the interview she haphazardly mentioned that she has to

have another knee replacement. I was a little shocked because I was under the

assumption knee replacements lasted about 20 years. When I asked her if it was typical

to have another knee replacement, she responded “No but the lupus has deteriorated

the knee so I have to get another one put in.” She made it seem like it was not that

important but she immediately followed with a statement “But I am going to wait as long

as I can. I am tired of getting cut on. I will wait until the pain is really bad.”


Again she offers additional comments without me having to probe. She looked

me squarely in the eyes and said “You know, I am very blessed. My husband has been

with me through it all and he still loves me even though I have all these scars and he

always wants me to be happy.” Her face lights up as she talks about how much her

husband does for her. Jackie has not worked in many years but her husband had never

once commented that the money is “his money” he freely gives her access to

everything. He sends her on shopping sprees when she is feeling well and tries to make

her life as happy as possible. She looks around the house at all the family pictures and

beautiful furniture. I feel as though all the memories she has with her family in that home

are coming to her mine and she stated “He has given me a great life. He is an amazing

husband and I thank God for him every day.”

Because Anastasia travels 80% of the time, her experience is a little different

than most people. She has had some flares within the past 6 years but they are not as

severe as some other patients. When describing her flares she comments, “Once I

wake up, I know what is happening. The pain is indescribable and I can barely get out of

bed.” I probed her to find out what is her routine at this point. She continued while using

her hands to try to convey the message. She tells me that “I prepare myself to be in the

bed for a day or two. I take my medicine, call my supervisor, and return to bed. Hoping

this feeling will pass so I can get back to my life.” Luckily she has never had a flare

while she is away from home but she does have a plan in case this happens. She also

commented that her life is a little different now since her divorce. Both of her children

are away in college consequently she lives alone and there is not anyone that drops by

her home on a regular basis. She has friends and family that live in the city in case she


needs anything but for the most part she has to handle all of her daily care. She

mentioned that she has only had 5 flares in the past 7 years and she chuckled while

saying, “all in all, that isn’t that bad.” To most people, having to deal with this would

seem unbearable but Anastasia does not seem to let this change her life.

When I asked Katherine how lupus has changed her life she quickly interjects,

“People look at me because of the rash and discoloration on my face. They are afraid to

ask questions so they just stare. But I am used to it.” Since Katherine has been living

with lupus for 30 years, she has learned how to ignore the stares or whispers. She just

remembers how blessed she is that none of her major organs are affected. With a

twinkle in her eye she states “I am the lucky one. I know that lupus will not be the death

of me. All of have to deal with is this physical appearance.” It is amazing to see how

unaffected she is about her appearance. She hurriedly reminds me she has not always

had this inner peace. At this time, she fiddles with her hands as she details her college

life. “My physical appearance bothered me for a long time. I always wondered if I would

ever get married or have children. I wondered if a man would ever love me.” The

intriguing thing about this comment is that most women feel insecure at one time or

another. In this minute, I see that Katherine is not different from other women who do

not have a chronic illness. She continues with her story by saying “After I met my

husband, most of my reservations were gone. In spite of this illness, I have had a

wonderful life with my husband and children.”

Essence of Experience

Through data analysis it became clear that the participants varied on two themes:

level of care received and experience of living with lupus. All four participants


acknowledged the importance of lupus education but because of availability or relativity

to the participant, they may not attend programs. Three of the participants were

optimistic about their life in spite of their diagnosis. The other participant did not seem

like she was depressed but she did not mention or allude to how she felt about the

future. This theme emerged after her interview therefore it was not possible to probe her

to see how she felt. Some of the participants experienced bad care in the past but all of

them are elated with the care they receive from their providers now. The participants

varied the most on their experience of living with lupus. This is mostly attributed to the

fact that lupus affects every person differently. Normally, no two people will have the

exact same experiences.

Discussion

Major Findings

The overall goal of this process was to understand lupus patients’ perceptions of

their medication and treatment regimen but I gained more information than I had

anticipated. In addition to learning about the participants’ treatment and medication

plans, I learned about their feelings towards their physicians, how they deal with flares

and other illnesses caused by the lupus and their process of handling their disease. The

four themes and two subthemes that emerged led to the discovery that all participants

experience their lupus in different ways. The data also displayed that that participants

are generally satisfied with the care they receive from providers and some of them have

a special relationship and fond memories of certain doctors whom have greatly

impacted their life. It was also revealed that educational programs are not widely

available in the Southeast United States. If programs were available, some of the


participants said they would attend and all of them acknowledged the importance of

lupus education.

Addressing Research Questions

The central research question posed at the beginning of the research was: How

do patients perceive their current treatment regimen? The sub questions were the

following: 1) How do lupus patients feel about the healthcare information they are given,

2) How do lupus patients perceive the care they receive and 3) How do lupus patients

feel about educational programs?

The participants were extremely trusting of their primary providers and felt good

about the information they were given. One of the participants did have an issue with

one of her providers and is currently looking to replace this physician. In most cases,

the providers were the primary source of information after diagnosis and about

continued care. Three of the participants also searched the internet and other sources

for additional information. None of the participants voiced any concerns about the

reading level of the material or relevance to their situation. But it should also be noted

that all four participants were college educated women and this could attribute to their

increased level of understanding of the material they were given.

All four women believe they receive great care and that their providers

communicate with each other about treatment plans. One participant noted that in the

past she was referred to doctors that were not properly equipped to handle her lupus.

This mostly occurred 30 years ago when she was initially diagnosed. She believes

physicians now are more knowledgeable and able to adequately care for patients with

lupus.


Two of the participants have not attended any form of educational classes

because of a lack of perceived severity of illness and lack of available time. However,

they did state that if programs were available in or near where they live they might

consider attending. The other two participants have attended education sessions and

one is very involved with several lupus associations. The participant that was diagnosed

30 years ago does not think educational sessions are beneficial to her at this point in

her life because she has lived with the disease for many years and there is not much

she does not know.

At this time, I am not able to compare the results from the pilot study to other

research in the field because to my knowledge this phenomenon has never been

explored before. Hopefully, this pilot study will lead researchers to become more

interested in this area of health education and will eventually lead to improved care for

individuals suffering from lupus.

Limitations

There were several limitations noted during the implementation of this research.

The sampling method was not ideal but it was the best option after my initial recruitment

attempt failed. Sometimes, convenience sampling does not give you a true

representation of the population.

Another limitation noted was the use of one data collection method. Initially, I

wanted to complete an observation of the patients during their clinic visit and complete

an interview. It is always good practice to use as many data collection methods as

possible but again that was not possible in this situation. After failing to recruit patients

from the lupus clinic at the large university hospital, the time allotted for the course was


coming to an end. An additional data collection method was not an option since the

researcher had to travel to various locations to complete interviews and three of the

participants did not have any doctor’s appointments scheduled before the end of the

semester.

Implications for Practice

One of the most important things learned from this research is that patients will

have different views on their care and educational programs depending upon how long

they have been living with lupus. Moving forward, any type of educational program that

is meant to reach a large number of people should not be too specific in its content.

Programming should focus on health and nutrition, disease management, ways to

reduce stress and developing a plan for when a flare occurs.

Sharon’s situation portrayed what can happen when physicians do not

communicate. I would urge that physicians and other providers are a part of a team that

treats a lupus patient understands the importance of communication and professional

courtesy. Medications and treatment plans should not be changed until all parties have

agreed upon a course of action. This step may be time consuming and cumbersome but

in the end, it could save the patient a lot of time and unnecessary pain.

Lupus patients might also benefit from education sessions centered on learning

how to find credible internet sources, increasing self efficacy, and learning about

additional resources in their community. Half of the participants rely heavily on their

physicians for information. These women are fortunate in that they are able to talk to

their providers and have their questions answered. Some people with lupus do not have

this type of relationship. Being able to locate credible information is essential to


managing any illness. There are numerous websites available on the world wide web

that are not based on any type of literature or research. Giving people the skills to be

able to sift through the wealth of information available could save their life.

Recommendations for Future Research

This pilot study has provided much needed information from the perspective of

women with lupus. In the tradition of pilot studies, the sample size was quite small. I

would recommend this study to be replicated with a larger sample size. I would also

recommend that in the future, researchers try to gather information from a more diverse

population. All of my participants were of the same race, are roughly the same age, and

all live in the Southeast United States. It would be interesting to examine if there were

differences displayed on location, gender, or culture.

This pilot study was a great start but quantitative research should be conducted

as well. Quantitative and qualitative research should work hand in hand to further

research. Both forms of research can lead to changes in the way people receive health

care information. I would suggest conducting surveys and focus groups for lupus

patients and rheumatologists. The study focusing on rheumatologists could examine the

roadblocks to creating effective education programs for lupus patients. The survey could

provide a direct benefit to lupus patients. The quantitative survey study could test the

theory of planned behavior by relating the lack of lupus education programs to

physician’s attitudes towards educational programs and availability of resources.

These types of studies could assist in the implementation of effective health

education programs for people with lupus. Effective education programs should provide

information on disease management, medication compliance, and how to emotionally


handle disease diagnosis. Even though each person experiences and deals with their

lupus differently, the abovementioned topics can be presented in a broad fashion that is

helpful to all participants.

References

American Psychological Association (2011). Ethical principles of psychologists and

code of conduct: Standard 8: Research and publication. Retrieved from

http://www.apa.org/ethics/code/index.aspx

Centers for Disease Control and Prevention. (2010). Systemic Lupus Erythematosus

Or SLE. Retrieved from http://www.cdc.gov/arthritis/basics/lupus.htm

Costenbader, K.H., Kim, D.J., Peerzada, J., Lockman, S., Nobles-Knight, D., Petri, M.,

& Karlson, E.W. (2004). Cigarette smoking and the risk of systemic lupus

erythematosus: A meta-analysis. Arthrits & Rheumatism, 50(3). doi:

10.1002/art20049.

Creswell, J.W. (2007). Qualitative inquiry and research design: Choosing among the

five approaches (2nd ed.). Thousand Oaks, CA: Sage Publications.

Creswell, J.W. (2008). Educational Research: planning, conducting, and evaluating

quantitative and qualitative research. Upper Saddle River, NJ: Pearson, Merrill

Prentice Hall.

http://www.cdc.gov/arthritis/basics/lupus.htm

http://www.apa.org/ethics/code/index.aspx


Creswell , J.W. (2009). Research design: Qualitative, quantitative, and mixed

methods approaches. (3rd ed.). Thousand Oaks, CA: Sage Publications.

Creswell, J.W., & Miller, D.L. (2000). Determining validity in qualitative inquiry. Theory

into Practice, 39(3), 1-7. doi:10.1207/s15430421tip3903_2

Ghaussy, N.O., Sibbitt, W.L. & Qualls, C.R. (2001). Cigarette Smoking, alcohol

consumption, and the risk of systemic lupus erythematosus: a case control study.

The Journal of Rheumatology, 28(11), 2449-2453.

Helmick, C.G., Felson, D.T., Lawrence, R.C., Gabriel, S., Hirsch, R., Kwoh, C.K., Liang,

M.H., Maradit, K.H., Mayes, M.D., Merkel, P.A., Pillemer, S.R., Reveille, J.D., &

Stone, J.H. (2008). Estimates of the prevalence of arthritis and other rheumatic

conditions in the United States: Part I. Arthritis & Rheumatism 2008, 58(1):15–25

Hirsh, J.M. & Gardner, E.M. (2009). A pilot study to determine whether patients are

likely to understand the educational information available on-line about arthritic

disorders. Journal of Clinical Rheumatology, 15(7), 367-368.

Jones, S. R., Torres, V., & Arminio, J. (2006). Negotiating the complexities of qualitative

research in higher education: Fundamental elements and issues. New York:

Rutledge.

Miot, H.A., Miot, L.D., Haddad, G.R. (2005). Association between Discoid Lupus

Erythematosus and Cigarette Smoking. Dermatology, 211(2), 118-122.

doi: 10.1159/000086440.

Morse, J., & Richards, L. (2002). README FIRST: For a user’s guide to qualitative

methods.Thousand Oaks, CA: Sage Publications.

Saounatsou, M., Patsi, O, Fasoi, G., Stylianou, M., Kavga, A., Economou, O., Mandi, P.


& Nicolaou, M. (2002). The Influence of the Hypertensive Patient’s Education in

Compliance with Their Medication. Public Health Nursing, 18(6), 436-442.

doi: 10.146/j.1525-1446.2001.00436

Seltzer, A., Roncari, I. & Garfinkenl, P. (1980). Effect of Patient Education on

Medication Compliance. The Canadian Journal of Psychology, 25(8), 638-645.

Retrieved from:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC17525249/pdf/V057p00146.pdf

Stake, R.E. (1995). The Art of Case Study Research. Thousand Oaks, CA: Sage

Publications.

Ward, M. (2004). Education level and mortality in systemic lupus erythematosus (SLE):

evidence of underascertainment of deaths due to SLE in ethnic minorities with

low education levels. Arthritis & Rheumatism, 51(4), 616-624.

Ward, M. (2007). Medical insurance, socioeconomic status, and age of onset of

endstage renal disease in patients with lupus nephritis. The Journal of

Rheumatology, 34(10), 2024-2027.

http://www.sagepub.com/booksProdDesc.nav?prodId=Book4954

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC17525249/pdf/V057p00146.pdf


Appendix A: Recruitment Letter

March 1, 2012

Dear Patient,

I am writing to invite you to participate in a research study titled “A Qualitative Study on Lupus Patients’ Perceptions of Current Medication and Treatment Regimens.” As a post-graduate student I would like to know how you feel about the current care you are receiving for Lupus.

The study will take place from March 2012 through April 2012. You are asked to take part in one face to face interview that will be scheduled at your convenience. The interview will last about forty five minutes. I will conduct the interview and it will be tape recorded. I am recording the interviews to make sure I do not miss any important information.

You have been chosen for this study because you have been diagnosed with lupus. You do not have to participate in this study. You will not receive payment for your time given to this study. You may leave the study at any point during this process. Any information gained from you will be used to complete an assignment required for my research course. It may also help improve care for lupus patients in the future. If you choose to participate, your identity will remain a secret and your name will not be given in our report. All interview tapes and written transcripts of our conversations will be kept in a locked location. All emails will remain on a password-protected computer.

If you have any questions or need to contact me, please feel free to do so. I hope you are willing to participate in this study and I look forward to hearing back from you soon.

Sincerely,


Jessica Altice, [[email protected]]Principal Investigator

Appendix B: Informed Consent Document

Informed Consent Document

Title: A Qualitative Study on Lupus Patients’ Perceptions of Current Medication and Treatment Regimens

Principal Investigator: Jessica Altice, MAEd

Institution: University of Alabama at Birmingham

Course: EPR 696

Please carefully read the consent form. If you any questions about this document or the research project, please ask the principal investigator.

Purpose

The purpose of this pilot study is to explore lupus patients’ perceptions about their current medication and treatment regimen and their feelings about educational programs.

Procedure

You are being asked to participate in an in person interview that will roughly last about 45 minutes. After the interview, the principal investigator will transcribe the interview and send you a copy so that you can review it for accuracy.


Risks

Because of the sensitive nature of the health information you disclose, you may experience mild psychological risks. If at any time during this research you believe the risk outweighs the benefit, you are free to withdraw without any penalty to you.

Benefits

This research may not have any direct benefit for you but it is my hope that your participation could one day guide the implementation of lupus education programs.

Compensation

There is no compensation for your participation in this pilot study.

Confidentiality

Your name, specific location, or any identifying factors will never be disclosed during the completion of this research. Only the principal investigator will have access to your name and that information will be kept on a password protected computer.

Authorization

I have read and fully understand this consent form. I choose to participate in this pilot study. I understand that I will receive a copy of this form and the transcribed interview.

Participant Name (Printed): _____________________________

Participant Signature: __________________________________

Date: ______________

Principal Investigator Signature: __________________________

Date: ______________


Appendix C: Interview Protocol

Interview Protocol

A Qualitative Study on Lupus Patients’ Perceptions of Current Medication and Treatment Regimens

Time of interview: _____________________________________Date: ________________________________________________Place: _______________________________________________Participant: ___________________________________________Introduction:(Participant name), I want to thank you for taking the time to talk with me today.Everything we say is on the record unless you request otherwise during the interview.As stated in the recruitment letter, I am conducting a study for a research class project at UAB. The purpose of our study is to understand how you feel about your medication and treatment plans. During this interview, I will take notes and record the interview so I do not miss anything you say. The audio tapes will later be transcribed for analysis. If you wish, you can review the transcriptions for accuracy. To protect your privacy, I will use a pseudonym in the research paper.

Questions

Icebreaker: How long have you been living with lupus?


Probe: Tell me about the process of receiving your diagnosis.

Probe: Tell me about your experience of living with lupus?

1. Tell me about the physician that handles most of your care.

Probe: Does this physician communicate with your other physicians?

2. How do you receive information about lupus?

Probe: Is the information easy to understand?


3. How do you feel about the care you receive from your physicians?

Probe: Are you able to ask questions during appointments?

Probe: How do you feel when you leave your appointments?

4. What is your perception of lupus education programs?

Probe: How would you feel about attending educational programs?

Probe: Have you attended any educational programs in the past?

Probe: What was your impression of these educational programs?


Appendix D: Table of Themes and Codes

Themes/Subthemes Codes

Level of care received

Sub theme- past care Physicians were not knowledgeable

One physician changed her life

Physician can be a godsend

Sub theme- current care Physicians don’t communicate

Thorough in explanations

Complete trust in providers

Comfortable with providers

Lack of communication cause hospitilization

High level of satisfaction

Material easy to understand

Optimism about the future There is life after a lupus


diagnosis

Planning for future with family

Lupus is not going to go away

Looking forward to a cure

Lupus has not greatly changed life

View of educational programs Large need in their area

May not be beneficial in all situations

Can be time consuming

Is essential when people are first diagnosed

Physicians may need education too

Experience of living with lupus Disease attacks the whole body

Ancillary illnesses caused by lupus

Relatively no problems with lupus

Few number of flares

Self esteem affected by appearance

Health insurance affects type of care

A Qualitative Study on Lupus Patients (2)

Documents

Transcript of A Qualitative Study on Lupus Patients (2)