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DEPRESSION AND ANXIETY IN PATIENTS WITH SYSTEMIC

LUPUS ERYTHEMATOSUS

by

KAREN JONES

THESIS

Presented to the Faculty of the

School of Nursing

College of Health and Social Welfare

University of Alaska Anchorage

In Partial Fulfillment of the Requirements

For the Degree of

MASTER OF SCIENCE, NURSING SCIENCE

July 2003

Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.

UMI Number: 1418116

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Depression and Anxiety in Patients With Systemic Lupus Erythematosus

Approved:

Accepted:

by

Karen S. Jones

Thesis Committee

1 Q u / ) L t \ .Barbara Berner, Ed.D., M.N., F.N.P. Thesis Chairperson

. =?,[4^Date

Christina Mumma, Ph.D., R.N. Date

MMary Logdn, Ph.D., R.N. Date

Tina DeLapp, Ed.D., R.N. Director, School of Nursing

g ///0 '5Date

Cheryfmsley Am. D.Dearf^College of Health ahtLSocial Welfare

-*zxs5Date


AbstractDepression and anxiety occur frequently in patients with Systemic Lupus

Erythematosus (SLE). Either condition may be a reaction to living with a chronic illness as

well as an organic complication of the disease.

A qualitative study was conducted using a phenomenological interpretative

design. Participants were women aged 45-68 who were asked to describe their experience

with depression or anxiety since the diagnosis of SLE. Seven common themes emerged that

included: Its just a black, depressing disease; It just felt like my life was over; I should be

able to do that; I never really had problems with anxiety.. .until I got sick; I dont do things

that I want to do; I feel like they are getting short changed; and What was going to happen

to me. Increased knowledge of the experience of depression and anxiety will help to create

improved interventions and support for individuals with this disease.


TABLE OF CONTENTS

Abstract.......................................................................................................................................i

Table of Contents...................................................................................................................... ii

Table of Tables.........................................................................................................................iv

Chapter 1Introduction........................................................................................................................1Background Information...................................................................................................3Symptoms and Diagnosis................................................................................................. 4Statement of the Problem..................................................................................................5Purpose of the Study.........................................................................................................5Significance for Nursing...................................................................................................6

Chapter 2 Review of LiteratureIntroduction....................................................................................................................... 8Overview of Systemic Lupus Erythematosus...................................................................8Etiology..............................................................................................................................8Pathogenesis...................................................................................................................... 8Pathophysiology................................................................................................................9Clinical Manifestations................................................................................................... 10Therapy......................................................................................................................... 11Living with Systemic Lupus Erythematosus..................................................................13Prognosis..........................................................................................................................15Depression in Chronic Illness......................................................................................... 15

Systemic Lupus Erythematosus and Depression/Anxiety.....................................................17Depression and Anxiety Symptoms in Systemic Lupus Erythematosus...................... 17Relationship Between Depression/Anxiety and

Disease Status........................................................................................................ 19Co-Morbidity of Anxiety and Depression.............................................................. 21Social Support and Depression/Anxiety.............................................................. 22Socioeconomic Status and Depression or Anxiety................................................ 25Gender and Depression or Anxiety...................................................................... 25Education and Depression or Anxiety................................................................. 26Nationality and Depression or Anxiety................................................................... 28

Conclusions............................................................................................................................ 30

Chapter 3 MethodsMethods........................................................................................................................... 32Context..............................................................................................................................32Research Design Overview............................................................................................ 32


iiiPhenomenology............................................................................................................... 32Participants........................................................................................................................34Interview Guide...............................................................................................................34Interviews........................................................................................................................ 35Protection of Research Participants.................................................................................36Data Analysis...................................................................................................................36Trustworthiness................................................................................................................ 37

Chapter 4 FindingsIntroduction..................................................................................................................... 41Description of Participants............................................................................................. 41Results of Data Analysis.................................................................................................41Emerging Themes........................................................................................................... 42

Its Just A Black, Depressing Disease . . .............................................................. 44It Just Felt Like My Life Was Over.........................................................................46I Should Be Able To Do That...................................................................................46I Never Really Had Problems with Anxiety... Until I Got Sick .............................. 47I Dont Do Things That I Want To D o .................................... 49I Feel Like They Are Getting Short Changed.........................................................50What Was Going To Happen To M e ........................................................................ 52

Summary..........................................................................................................................53

Chapter 5 ConclusionsConclusions And Recommendations..............................................................................55Introduction......................................................................................................................55Discussion of Findings.................................................................................................... 55

Its Just a Black Depressing Disease........................................................................55It Just Felt Like My Life Was Over......................................................................... 57I Should Be Able To Do That................................................................................... 58I Never Really Had Problems with Anxiety.. .Until I Got Sick............................. 59I Dont Do Things I Want To D o ......................................................................... 60I Feel Like They Are Getting Short Changed......................................................... 62What Was Going To Happen To M e....................................................................... 63

Recommendations for Future Research......................................................................... 65Recommendations for Nursing Practice..................................................................... 67

References............................................................................................................................... 70

Appendix A: Letter of Support from the Lupus Foundation of Alaska........................ 76Appendix B: Recruitment Flyer............................................................................................. 77Appendix B: Interview Guide.................................................................................................78Appendix D Explanation and Consent Form Explanation and Consent Form:.................. 79


Table 1: Emerging themes

List of Tables


CHAPTER ONE

Introduction

The emotional impact of a fluctuating chronic disease such as Systemic Lupus

Erythematosus (SLE) can be intense, with the emotional response being significantly

disabling (Lewis, 1998). The prevalence of psychiatric disorders in SLE varies between ten

and 70% depending on the study (Shortall, Isenberg & Newman, 1995).

Systemic lupus erythematosus (SLE) is an inflammatory autoimmune disorder with

no known cure that predominantly affects women of childbearing age (Tsokos, 2001). One

of the hallmarks of SLE is its pattern of alternating remissions and exacerbations. Although

many people experience extended periods when the disease activity is quiet, SLE can be

severe and even life threatening for some (Kuper & Failla, 2000). The survival rate for

SLE has been increasing from 50% at five years in 1950 to 80%-90% in the 1990s

(Godfrey & Ryan, 2001).

The normally functioning immune system attacks foreign bacteria, viruses and

fungi that invade the body. In SLE, the immune system fails to recognize the bodys own

tissue and will mount an attack as if the tissue were foreign. This attack causes

inflammation as well as tissue destruction and can occur anywhere in the body (Rowland,

2001).

At present, the exact etiology of SLE remains unknown but probably encompasses

multiple triggers. Factors recognized as possible triggers for lupus include exposure to

ultraviolet light, genetic factors, environmental factors, irregularities in the immune system,


2medications, and infections. Female hormones are also involved, and estrogens may affect

the way gene transcription is regulated (Tsokos, 2001).

Depression in society as a whole is a major health problem and one that is expected

to increase over the coming years. The World Health Organization identified major

depression as the fourth leading cause of worldwide disease in 1990 and projects it to

become the second leading cause of disability worldwide in 2020. Depression in the United

States is common, with prevalence rates between 4.8% and 8.6% in the primary care setting

(U.S. Preventive Services Task Force, 2002). People who have a chronic illness suffer

substantially increased rates of clinical depression that can be as high as 60% (Shapiro,

1998).

The prevalence of psychiatric distress in SLE varies between 10%-70% depending

on the study with depression being the most common disorder (Shortall, Isenberg &

Newman, 1995; Shapiro, 1998). The presence of depression puts people with comorbid

conditions, such as SLE, at increased risk for illness and death as well as increasing the risk

for alcohol, drug and cigarette abuse (Shapiro, 1998). According to the American

Psychiatric Associations (APA) Diagnostic and Statistical Manual o f Mental Disorders,

Fourth Edition (1994), the most serious effect of untreated or undertreated depression is

suicide. Depression in people with SLE is often not diagnosed, and when diagnosed, is

undertreated or inadequately treated (Shapiro, 1998) because the symptoms of depression

and the disease process can be very similar.

Frequently, depression is found to coexist with anxiety disorders in the general

population (Srinivasa, 1997), and several studies have documented the co-morbidity of


3depression, anxiety, and SLE (Segui, Ramos-Casals, Garcia-Carrasco, de Flores, Cervera,

Valdes, Font, and Ingelmo, M, 2000; Tayer, Nicassio, Weisman, Schuman & Daly, 2001;

Ward, Marx & Barry, 2002). People who experience these co-morbid conditions are more

likely to suffer greater disability as well as have a diminished response to treatment (Malhi,

Parker, Gladstone, Wilhelm, & Mitchell, 2002).

Background Information

SLE has been recognized as a disorder since 1828, when Biett, a French

dermatologist, described visual symptoms of the disease such as rashes. By the 1890s,

Osier discovered that SLE could also affect internal organs. Since 1954, proteins

(antibodies) that act against the persons own tissues have been identified, which has led to

a sensitive test for SLE (Rattner & Whitehead, 2001).

The Lupus Foundation of America has estimated that there are 1,400,000 current

cases of lupus in the United States (Shapiro, 1998). New cases of SLE are diagnosed at a

rate of six per 100,000 people in low-risk groups (Belmont, 1998). Sixty percent of SLE

patients experience onset of their disease between puberty and their forties; of that group,

the ratio of women to men is 9:1 (Belmont, 1998). Belmont (1998) noted that the disease

occurs more often in African Americans and Asians although the highest incidence of

developing SLE is found in Caribbean blacks. African Americans also have the highest

mortality rate among patients with SLE (Trends in Deaths from Systemic Lupus

Erythematosus -United States, 1979-1998, 2002).


4Symptoms and Diagnosis

SLE is diagnosed according to diagnostic criteria outlined by the American

Rheumatology Association. Currently, a person must exhibit at least four criteria for a

diagnosis of SLE to be made (Hochberg, 1997; Tan, 1982). Symptoms affect multiple

organs and may include, but are not limited to, skin rashes, photosensitivity, arthritis, oral

ulcers, serositis, neurological symptoms, kidney problems, and hematological symptoms.

Because symptoms wax and wane, people may experience a long period of poor health

before a definitive diagnosis can be made.

The exact mechanism that produces psychiatric symptoms in SLE is not clearly

understood (Wallace, 2002), but it has been reported to result in depression, anxiety,

dementia, and psychosis (Chin, Cheong & Kong, 1993). According to Wallace (2002),

the autoimmune response characteristic of SLE may produce direct damage to blood

vessels (vasculitis) together with interrupted or slowed blood flow, which decreases

available oxygen and nutrients. Other factors that may have a role in the development of

depression or anxiety include emotional stress, medications such as steroids, sacrifices

made in personal lives, and factors that may not be related to SLE (Shapiro, 1998).

As a result of advancements in anti-depressant medication and general

understanding, the prognosis of depression and anxiety is very good for the patient with

SLE. Piccinelli (1998) found that both disorders respond to the same medications. The

treatment goals should include decreasing the symptoms of depression and anxiety,

improving the quality of life, reducing the risk of reoccurrences, improving the health

status, decreasing the health costs and decreasing mortality (Kuper & Failla, 2000).


5Statement of the Problem

As noted previously, neuropsychiatric symptoms occur in approximately ten to

70% of SLE patients, with depression being the most common disorder. This prevalence

exceeds that of depression in the primary care setting, which has been estimated to be

between 4.8% and 8.6% (U.S. Preventive Services Task Force, 2002).

Depression is often misdiagnosed in patients with SLE as the symptoms of

depression often mimic those of the disease itself. Consequently, depressive symptoms

may go untreated, thereby unnecessarily exacerbating SLE patients suffering. Given the

high prevalence of depression as well as the consequence of possible suicide, recognizing

and understanding the experience of depression and anxiety in SLE patients is important

and can lead to improved quality of health care and improved quality of life for these

patients. Further, attributing depressive symptoms exclusively to the disease state may

obscure the role of other factors in the experience of depressive symptoms, such as

emotional stress from coping with a chronic illness, sacrifices and adjustments in life that

are necessitated by a chronic illness. The recognition of depression and anxiety as a

frequent co-morbid condition in patients with SLE is important for the effective treatment

of the patient.

Purpose of the Study

The goal of the study was to investigate the experience of depression and anxiety in

people with SLE. Specifically, the aim of the research was to develop a better

understanding of the experience of depression and anxiety in SLE patients using a


6phenomenological approach to analyzing the participants spoken accounts of their

experience.

Significance for Nursing

Depression alone or with anxiety is expensive, common, and a source of disability.

Depression is associated with reduced productivity, increased risk for suicide as well as

patient and family suffering. The U.S. Preventive Services Task Force (2002) has issued a

grade B recommendation to screen adults for depression in the primary care setting if the

practice has the ability to diagnose, treat, and follow the patient. One of the obstacles

identified by Mulrow, Williams, Gerety, Ramirez, Montiel, and Kerber (1995) to the

recognition of depression includes competing comorbid conditions such as SLE. In

addition, the presence of depression and co-morbid conditions place the patient at increased

risk for illness and death (Mulrow, et ah, 1995; Rojas-Serrano & Cardiel, 2000).

Piccinelli (1998) found that the symptoms of depression and anxiety were strongly

associated with each other, and at times, had overlapping boundaries. As stated earlier,

depression alone or with anxiety are frequently found in patients who suffer from SLE..

Unfortunately, depression may go untreated until the symptoms become unbearable for the

patient or family (Shapiro, 1998). Shapiro (1998) advocates for early recognition as well as

adequate and aggressive treatment that involves both the provider as well as the patient. In

addition to pharmacological intervention, some patients may benefit from psychotherapy

that includes assistance with coping strategies and understanding their feelings. Thus, an

on-going relationship between the primary care provider and a psychotherapist can improve

the quality of care provided.


7To provide adequate and effective health care, it is important for advanced practice

nurses to recognize that patients with SLE are at increased risk to develop depression

and/or anxiety, and both disorders respond to standard psychiatric treatment. The

psychiatric symptoms, while partly a function of the disease process, also have experiential

components that are related to the emotional impact of having the disease. The ability to

understand the meaning of the patients experience of anxiety or depression from the SLE

patients point of view is central to the care giving role of the advanced practice nurse,

who must attend to more than the patients physical needs. As noted by Kuper and Failla

(2000), providing interventions to decrease or prevent exacerbations, providing emotional

support, and providing individual and family education are all important nursing

considerations in SLE. Thus, a holistic approach to patient care that includes

psychological care is fundamental to effectively addressing the needs of the person with

SLE.

The significance of the present study for advanced practice nursing was to

increase the body of knowledge and understanding of the SLE patients experience of

depression alone or with anxiety. Such an understanding may contribute to more effective

assessment of and intervention for SLE patients when or if they become depressed or

anxious, with the hoped for consequence that patients will lead longer and better quality

lives.


CHAPTER TWO

Review of Titerature

Introduction

The purpose of this chapter is to provide a review of the relevant research. The

chapter is divided into the following sections: overview of Systemic Lupus Erythematosus

(SLE), SLE and depression or anxiety, and conclusions.

Overview of Systemic Lupus Erythematosus

Etiology

The exact etiology of SLE is unknown. It is a chronic inflammatory autoimmune

disease where a persons immune system attacks and injures the bodys own organs and

tissues (Tsokos, 2001). Systemic lupus erythematosus patients have an abnormality in the

immune system wherein the bodys own tissues become the target of an immune attack

(Kimberly, 2001). The immune system, in addition to protecting the body against foreign

antigens, begins to produce autoantibodies (Crofts & DCruz, 1996).

Pathogenesis

Although the exact cause is unknown, SLE is typified by the formation of

autoantibodies and immune complexes that are directed at multiple antigens, the most of

which are found in the cell nucleus (antinuclear antibodies, ANA). These autoantibodies

have a role in the pathogenesis of this disease, but their exact role is not clear. Some of the

antibodies are involved in the creation of immune complexes that are found in affected

tissues (Wise, 1998).


9The occurrence of familial cases of SLE suggests a genetic predisposition. Research

suggests that there is a familial tendency toward autoimmune disease in general (Wise,

1998). Heredity may cause one family member to have SLE while another may have

rheumatoid arthritis. Several genes are involved, and most have been found in the lq and 6p

chromosomes (Tsokos, 2001).

Estrogens, including those in birth control pills, have been associated with SLE

exacerbations and may be involved in the regulation or expression of the disease. A

relationship between hormones and autoimmune disease has been inferred, because there is

a correlation between an increase in SLE symptoms and the menstrual cycles of women as

well as pregnancy. Although the role of estrogen is not completely understood, current

information suggests there is a relationship between estrogens and autoimmune diseases.

(Retrieved from http://www.lupus.org/ education/cause.html).

Pathophysiology

The precise pathophysiology of SLE remains elusive. The pathologic process is

thought to begin with the activation of abnormal antibodies by the B cells that cause an

autoimmune response in tissues. The aim of current research is to determine if the B cells

themselves are abnormal (Petri, 1998). The autoantibodies to cellular components or organs

combine with antigens and form immune complexes (Wise, 1998). These immune

complexes are then deposited into vascular and tissue surfaces where they trigger an

inflammatory response that can cause damage to the tissue (Wise, 1998). An underlying

cellular defect in SLE may include the process of natural cellular death as an immune


10response is triggered when the cellular antigens are exposed during the death of the cell

(Petri, 1998).

Clinical Manifestations

The diagnostic criteria as outlined by the American Rheumatology Association

include:

Malar erythema, flat or raised

Erythematous raised patches with keratotic scaling and follicular plugging

Rash as an unusual reaction to sunlight

Oral/nasopharyngeal ulcers, usually painless, observed by health-care provider

Non erosive arthritis involving > 2 peripheral joints with tenderness, swelling or effusion

Pleuritis or pericarditis

Proteinuria or cellular casts

Seizures or psychosis

Hemolysis, leucopenia, lymphopenia or low platelets

Immunological disorders such as positive anti-DNA, positive anti-Sm antibodies, positive LE prep, and positive phospholipid antibodies

Positive ANA while not taking drugs known to cause drug-induced lupus

(Hochberg, 1997; Tan, 1982).

Current practice generally requires a person to exhibit a minimum of four criteria

for a diagnosis of SLE to be made. While these criteria have formed a very useful basis for

ensuring clarity and accuracy in data collection (Ruggieri, 2001), for the person with


11evolving SLE who may, for example, only have three of these criteria, a long period of

uncertainty may add to the confusion surrounding the cause of continuing ill-health.

The diagnosis of SLE can be difficult as there is no specific test that will confirm an

absolute diagnosis. Laboratory tests that may assist in the diagnosis include an elevated

ANA, and anti-DNA antibodies. Additional testing using the lupus erythematosus cell

preparation may be helpful as the test is positive in about 70-80% of patients with SLE.

Affected skin or organs may also be biopsied and will show evidence of SLE with

abnormal deposition of antibodies (Rowland, 2001).

The classic red butterfly-shaped rash spreading across the cheeks and nose may

occur, or the rash may be coin-shaped and produce red scaly bumps over many parts of the

body. Ulcers may develop in the mouth or nose and hair loss occurs frequently (Rowland,

2001). Photosensitivity in SLE patients may lead to the tendency to sunburn easily, or

development of a skin rash after exposure to the sun. Arthritis, joint pain and other joint

problems are experienced by about 90% of patients with SLE (Rowland, 2001).

Inflammation of the pleurae may cause coughing or shortness of breath. Inflammation of

the heart or pericardium can cause myocarditis or pericarditis that can result in death.

Additional effects may include blood clots, gastrointestinal distress, inflammation of the

eyes as well as blindness (Rowland, 2001).

Therapy

Medications that are used to treat the underlying disease process in SLE have led to

improvements in patient care, and the ability to treat infections has helped to increase the

life expectancy of lupus patients (Godfrey & Ryan, 2001). Medications used in the


12treatment of SLE include non-steroidal anti-inflammatory drugs (NSAIDs) such as

ibuprofen and naproxen; new generation NSAIDs (Selective COX-2 inhibitor) such as

celecoxib and rofecoxib; the anti-malarial hydroxychloroquine; the corticosteroid

prednisone; and immunosuppressants such as cyclophosphamide, azathioprine and

methotrexate (Godfrey & Ryan, 2001).

Many of the pharmaceutical treatments for SLE, however, cause unpleasant or

potentially dangerous side effects that may contribute both to non-compliance with medical

treatments as well as discouragement due to the side effects of the medication (Klippel,

2001). Klippel, the director of the Arthritis Foundation, has written extensively regarding

the effects and side effects of medications used in the treatment of SLE. These are

discussed below.

The side effects of NSAIDs may include abdominal pain, diarrhea, fluid retention,

gastric ulcers and bleeding, easy bruising, nausea, tinnitus, and abnormal kidney and liver

function. Side effects of new generation NSAIDs are generally limited to fluid retention

and abnormal kidney and liver function. Hydroxychloroquine, used for skin and joint

problems, can, like SLE itself, cause nausea, diarrhea and stomach cramps, and may

produce black spots in the patients visual field. Prednisone is known to cause such side

effects as weight gain, hypertension, cataracts, moon face, osteoporosis, capillary fragility,

hyperglycemia, and mood disturbances (most often hyperactivity and irritability). The

immunosuppressant cyclophosphamide may cause hemorrhagic cystitis and bone marrow

suppression. Similarly, azathioprine may cause bone marrow suppression, as well as flu

like symptoms such as aches and pains that may be difficult to distinguish from SLE


13symptoms (Klippel, 2001). In addition to hepatatoxicity and bone marrow suppression,

methotrexate may produce respiratory symptoms such as cough, difficulty breathing, and

nausea, which may also be caused by SLE (Godfrey & Ryan, 2001).

Chronic pain associated with arthralgia and secondary fibromyalgia contributes to

fatigue, which has been identified as one of the hindrances to quality of life in SLE patients

(Taylor, Skan, Erb, Carruthers, Bowman, Gordon, & Isenberg, 2000). The use of non-

pharmacological therapies for symptom relief in conjunction with prescription

pharmaceuticals can improve the quality of life and reduce stress. Adjunctive therapies

such as herbs, massage, relaxation exercises, distraction (for example, music) and heat also

have been described as useful to disease and pain management (Rowland, 2001).

Living with SLE

Patients with SLE experience daily symptoms and limitations. Some of these may

include headache, fever, mouth sores, joint stiffness, pain, difficulty concentrating, word

search problems, shortness of breath, dry eyes, hair loss, anemia, fatigue, weight loss,

rashes, nausea, sunlight sensitivity as well as more serious symptoms affecting the heart,

lung, pancreas, and brain (Wise, 1998; Litton, 2003). These symptoms may interfere with

the patients ability to perform personal care, drive a car, perform household chores, enjoy

physical exercise or even comfortably walk around.

Patients have described living with SLE as a daily on-going struggle to maintain

balance in their lives. Most must learn to live with chronic and sometimes debilitating

symptoms (Litton, 2003). Before an actual diagnosis was made, many patients suffered for

years as their medical providers could not pinpoint a disease. Partridge, Karlson, Daltroy,


14Lew, Wright, Fossel, et al. (1997) studied work disability in patients with SLE. They

concluded that 40% of patients had to quit working completely while others required job

modifications. Many patients had learned to perform most activities in life with moderation

to decrease the risk of initiating a flare of their disease. Stuifbergen and Rogers (1997)

found patients who became advocates in their own health care that included searching for

new information about the disease, monitoring their own health status, listening carefully to

their own bodies and keeping in touch with other SLE sufferers as a source of support were

better able to tolerate the uncertain future.

Potts (1992) described her experience with SLE as a three-edged sword (page ix-

x). The first edge of the sword involved the acceptance of a chronic disease that included

the physical and psychological aspects. The physical symptoms included hair loss, an

unattractive rash on her face, bloating, debilitation as well as pain and generalized body

upsets. Intertwined with the physical symptoms were the psychological blows that included

depression, dependency that caused a loss of self-esteem and deflated the ego, fear, anxiety,

anger, isolation and always loneliness.

The second edge of the sword was the societal and cultural encumbrances. Potts felt

that our society accepted some diseases such as the influenza easily, but found it difficult to

accept a chronic disease such as SLE, cancer or AIDS. Relationships were difficult to

maintain due to stress, financial burdens of medical care, and illness intrusions.

The third and final edge of the sword was the medical profession. In a period of

eighteen months, twenty different physicians saw Potts. Her impression was that most of

the doctors guessed, withheld information and produced vague diagnoses. Irrefutable


15evidence of a disease was lacking; she was treated as a malingerer and was encouraged to

seek a psychiatric evaluation.

Unfortunately, this patients experience with SLE is very common. SLE is difficult

to diagnosis because it affects many different organs as well as exhibits confusing

symptoms that mimic those of many other diseases. The majority of the time objective data

are missing or there are fewer than the four diagnostic criteria present that are necessary for

a diagnosis (Wise, 1998).

Prognosis

Because systemic lupus erythematosus evolves over time, serious complications

can occur after many years of a relatively mild disease process (Petri, 1998). A marked

improvement in the prognosis of SLE has occurred over the past 20 to 30 years with the

majority of patients alive ten years after the diagnosis (Godfrey & Ryan, 2001). Several

factors have been identified as contributing to improved survival: the development of more

sensitive diagnostic tests leading to earlier diagnosis of milder disease and thus earlier

treatment as well as better supportive therapies and prompt treatment of complications

(Godfrey & Ryan, 2001).

Depression in Chronic Illness

Depression appears to be more prevalent among people with chronic disease than

among the population as a whole (Shapiro, 1998). Lewis (1998) found that the emotional

difficulties after the diagnosis of a chronic illness could be more troubling for patients than

the physical difficulties and tended to last for a longer period of time. Lewis concluded that

there were several factors that determined the severity of emotional reactions in patients,


16which included the general personality of the patient, the degree of life changes necessary,

unresolved anger that could resurface at stressful periods, the family resources, previous

exposure to serious illnesses, and the cohesiveness of family members when dealing with

stressful events. ONeil (2002) studied 21 women with Chronic Obstructive Pulmonary

Disease and found that four of the women reported continual depression while three of the

women were depressed occasionally. As with SLE, most of the women were troubled about

their inability to work, increased fatigue, loss of friendships, changes in sexual

relationships, and difficulty performing physical tasks. Additionally, their physical

limitations caused social isolation that also exacerbated the depression.

Donnelly (1999) found that any chronic illness was more likely to cause depression

because there is no known end to the disease. He concluded that there were several

common emotional aspects of any chronic illness that caused most of the psychological

difficulties, including depression. These included a change in the unconscious body image

that was as serious as in adolescence as well as a loss of autonomy. No longer were patients

self-assured; in its place were anxiety, worry, and fear about their future. Many people

struggled to maintain independence only to develop depression at their failure. The final

difficulty was a loss of intimacy. Chronic illnesses presented challenges in relationships for

both the patient and the people closest to them. To counteract the depression and difficulty,

Donnelly suggested patients concentrate on what they can control, make a commitment to

something important in their life, and understand that their future could not be controlled

but they could maintain a positive outlook.


17Systemic Lupus Erythematosus and Depression/Anxiety

Because SLE can affect multiple organ systems, it can have serious effects on the

nervous system, including the brain. These effects have been known to result in dementia,

psychosis, and depression, and have been consistently noted (Arnett, Reveille,

Moutsopoulos, Georgescu and Elkon, 1996). It is only in the last decade, however, that the

contribution of psychosocial factors to mental health status in persons with SLE has been

investigated. This section reviews what is currently known about depressive symptoms and

SLE. This is followed by a review of psychosocial factors such as social support,

socioeconomic status, gender, education, and race and ethnicity.

Depression and Anxiety Symptoms and SLE

As was noted above, depression or anxiety were associated in approximately 10%-

70% (Shortall, Isenberg & Newman, 1995) of patients with SLE depending on the study.

The general population has a prevalence rate of 4-8%-8.6% in the primary care setting

(U.S. Preventive Services Task Force, 2002). The effects of the disease on the brain explain

portions of the increased prevalence of depression as well as suffering from a chronic

illness in general (Shapiro, 1998). In SLE, depressive symptoms may last for only a few

months and usually respond to antidepressant medication (Shapiro, 1998). Antibodies to

ribosomal P protein appear to be a specific marker for SLE with depression (Arnett, et al.,

1996).

Segui et al. (2000) longitudinally studied psychiatric disorders in SLE patients

during active and non-active phases of their disease. During a six-month period, 20

consecutive women patients with SLE who presented with a SLE flare were included in the


18study. None of the participants received psychopharmacological treatment during the study

period. A number of psychiatric and psychosocial measures were used in the assessment,

and the physician responsible for assessing SLE activity was not aware of the results of the

psychiatric evaluations. The assessments were repeated one year later during an inactive

phase of the disease. Eight (40%) psychiatric cases were diagnosed during the acute phase

of SLE (generalized anxiety in five patients, panic disorders in two patients and generalized

anxiety plus depressive symptoms in one patient). During the inactive phase of their

disease, one year later, only two (10%) psychiatric cases (p

19Relationship between Depression/Anxiety and Disease Status.

Another question is whether depression/anxiety exacerbates disease status or

affects it in some other way. Several studies have addressed this issue.

Ward, Marx and Barry (2002) reported on a study of 23 patients with SLE to

establish if a change in anxiety or depression led to a reciprocal change in the activity of

their disease. Patients were assessed every two weeks during the 40-week study period, and

provided information regarding their level of depression, anxiety and the activity of their

disease. The disease activity was also assessed separately using four standardized

measurement tools.

It was found that a change in the symptoms of depression and anxiety was

positively correlated with changes in some of the assessment tools measuring disease

activity, but not in others. The Systemic Lupus Activity Measure (r = 0.21) and the

patient global assessment of SLE activity (r = 0.40) showed the strongest relationship.

The researchers found that a change in the patients depression or anxiety measures was

related to an equivalent change in the activity of SLE as assessed by the patient.

Interestingly, they found no support for the theory that an increase in psychological

distress was associated with a worsening of SLE activity.

This study was limited by small sample size and by the use of self-report

instruments with high face-validity to detect depression and anxiety. Also, the two-week

assessment interval may not have been sufficiently frequent to detect short-term changes

in psychological distress or disease status.


20Similarly, Tayer, et al., (2001) determined that exacerbations of disease status

predicted both fatigue and depression in persons with SLE. In this study, a clinical

rheumatologist used the Systemic Lupus Activity Measure (SLAM) to evaluate the disease

status of 81 patients (74 women, 7 men) with SLE. Participants were asked to complete two

assessments that were three months apart. The self-reported information included data on

their psychological status as well as measures about their level of depression, fatigue and

helplessness.

At the first and second measurement points, fatigue was significantly correlated

with disease status, helplessness, and depression (r = 0.53 to r = 0.59, p = < 0.05). Higher

depression scores were also related to higher disease activity and helplessness. Cross-

sectional analysis found that lower socioeconomic status as well as the use of steroids or

NSAIDs was associated with a higher degree of helplessness.

While analysis revealed a direct and indirect relationship between disease status and

fatigue, only disease status was related to fatigue over time. The authors concluded that

general management of SLE should include measures that will reduce fatigue. This

suggests that fatigue reduction may be related to depression as well.

Limitations of this study relate to its correlational design, which prevents causal

inferences from being made and to the short (three-month) duration. The use of path

analysis, which only detects direct and indirect associations, also limits causal inferences.

Further, a longer study period is probably necessary to adequately study changes in

patients adjustment to SLE, as noted by the authors.


21Co-morbidity o f Anxiety and Depression

Despite the frequent co-morbidity of depression and anxiety (American Psychiatric

Association, 2000), only one study was found that specifically assessed anxious and

depressed moods in patients with SLE. Shortall, Isenberg and Newman (1995) used a

cross-sectional prospective analysis to study psychosocial factors associated with an

anxious and depressed mood, and clinical anxiety and depression in SLE. Measures of

anxiety and depression, disease activity, presence of autoantibodies, neuropsychological

performance, and psychological and social factors were assessed in eighty (seventy-six

women and four men) outpatients who attended a rheumatology clinic in London, England.

Using the Hospital Anxiety and Depression Questionnaire, twenty-one (26%) of the

participants were found to score above the threshold (> 8) for clinical depression and was

identified as a problem by 78% of participants. More participants scored above the cutoff

(> 8) for clinical anxiety (31 of 80; 39%) than for depression. In patients with anxiety and

depression, higher mean levels of anxiety were found when compared to depression (t =

6.17;/? < 0.001). Patients with SLE rated fatigue (26%), pain (17%), restricted lifestyle

(22%), problems with appearance (18%) and depression (78%) as the areas they considered

problematic. Results indicated that disease activity was not related to depression alone or in

combination with anxiety but were associated with factors such as physical disability,

limited social contacts, worry over cognitive abilities and perceived problems with SLE.

However, the authors did not indicate what proportion, if any, of the participants were

anxious and depressed, anxious only, or depressed only. This is important information to


22know because depression and anxiety show high co-morbidity (American Psychiatric

Association, 2000).

One of the strengths of this study was its examination of the full range of anxious

and depressed affect in SLE patients without regard to whether these symptoms were

sufficiently high to warrant treatment, an approach that served to provide a greater

understanding of factors predictive of psychological distress in this population. However,

the finding that anxiety was more prevalent than depression in the sample, while important,

is limited in utility in that the authors did not analyze co-morbid anxiety and depression; it

is possible that the experience of depression in conjunction with anxiety is significantly

different from the experience of depression alone.

Despite the current inclination to consider anxiety and depression to be

diagnostically separate entities, evidence and arguments abound that these are in fact

overlapping diagnoses (Piccinelli, 1998). Anxiety has been found to precede symptoms of

depression more often than anxiety following depression, a sequence of events that

suggests that anxiety may be a pretrial stage of depression or may play an etiological role in

the appearance of depression (Piccinelli, 1998).

Social Support and Depression or Anxiety

It has long been thought that social support is important for a patients well-being

and that this will correspond to a lower risk of depression when confronted with a chronic

illness. Wade and Kendler (2000) found there was no interaction between social support

and stressful life events in predicting depression in women with SLE. These researchers

used a sophisticated regression technique with a large sample of twins (2,163 female twin


23pairs) to determine whether a main-effect or a buffering model best explains the nature of

the relationship among social support, major depression and stressful life events. The study

used two waves of interview data on 2,163 female twin pairs from a population-based twin

registry. These data were analyzed using discrete time survival analysis with both logistic

and linear regression models. Interactions between eight dimensions of social support and

16 categories of stressful life events were analyzed for their ability to predict onset of

depression and levels of depressive symptoms. Results showed that in the presence of a

significant effect of a stressful life event on major depression (beta >100), evidence was

found for seven interactions out of a possible 93, none of which involved buffering effects.

Likewise, results of depressive symptomatology showed two interactions (both buffering)

out of a possible 28. That is, results showed where either major depression or depressive

symptomatology was used as the dependent variable, social support did not provide

buffering effects beyond what would be expected by chance. The authors concluded that

there is little evidence to support the idea that social support plays a buffering role in the

face of adverse life events for women with SLE.

Despite the breadth of the sample and sophistication of the analysis in this study, it

should be noted that the research was focused on stressful life events in general rather than

particular life events, such as diagnosis with a chronic or life-threatening illness. This is an

important distinction because of the generally positive effect that has been found for social

support in relation to illnesses such as cancer. For example, the role of social support in

determining how individuals cope with and adjust to a variety of troubled areas, including

breast cancer, has been verified by many studies (Alferi, Carver, Antoni, Weiss & Duran,


242001; Johnson, Winett, Meyer, Greenhouse, & Miller, 1999). Alferi, et al. (2001) found

that breast cancer patients who had social support before surgery from spouse and friends

had less distress after surgery. In another recent study, individuals with bipolar disorder and

who had low levels of social support recovered more slowly than those with higher levels

of social support (Johnson, et al., 1999).

In a study of the impact of several social factors, including understanding of the

disease at diagnosis, on depression, anxiety and psychological distress in Japanese women

with SLE, Ishikura, Morimoto, Tanaka, Kinukawa, Yoshizawa, Horiuchi, Nakashima and

Otsuka (2001) used stepwise multiple logistic regression analyses and found that the

patients understanding of their disease, SLE, at the beginning of their treatment

significantly decreased the expression of depression (OR 0.027,/? = 0.0037) as measured

by the Self-Rating Depression Scale and trait anxiety (OR 0.216,/? = 0.002) as measured by

the State-Trait Anxiety Inventory. Single marital status also was linked to a statistically

significant increase in depression (OR 0.271, p = 0.0119). The researchers also found that

poor relationships among family members or high usage of steroids increased suicidal

ideation. However, there were no correlations between the psychological features and

disease activity at the time of investigation. They concluded that in Japanese female SLE

outpatients, helping patients to understand SLE at the beginning of treatment, improving

relationships among family members, and addressing issues related to steroid therapy may

be useful for the early treatment or prevention of major mental problems. However, owing

to the limitation of the sample to Japanese women, it is not known whether these findings

could apply to men or to other ethnic groups or nationalities.


25Socioeconomic Status and Depression or Anxiety

A patients socioeconomic status (SES) that includes amount of education, income

level, availability of medical insurance as well as occupation may influence morbidity and

mortality in SLE. Only one study was found that specifically addressed SES. Lotstein,

Ward, Bush, Lambert, von Vollenhoven & Neuwelt (1998) investigated psychosocial

factors potentially mediating the relationship between SES and morbidity in women with

SLE. In this study, the researchers used a cross sectional sample of 100 women with SLE.

Of the eighteen psychosocial items that were identified as possible mediators, only three

items were found to correlate with higher disability scores in women with lower SES.

They included higher depression scores (p = 0.0002), higher BMI (p = 0.0006) and the

restriction of access to medical care (p = 0.02). The researchers concluded that lower

socioeconomic factors in women with SLE affected morbidity. Improving these factors

may be an effective way to improve the health outcomes of women with SLE.

Limitations of this study related to its cross sectional design, which made it difficult

to make inferences about causal relationships among the variables. That is, lower SES may

have been a result of psychosocial factors, or vice versa. Another limitation related to

restrictions in the sample: only one geographic area was used, and the study depended on

the participants ability to read and complete a questionnaire, thus excluding non-English

speakers and those with low literacy skills.

Gender and Depression or Anxiety

Relatively few studies concerning the effects of patient gender on depressive status

in SLE have been conducted. As noted above, Ishikura et al. (2001) found that among


26Japanese women with SLE, depression and suicidal ideation were associated with lack of

understanding of the disease at the start of treatment, single marital status, poor family

relationships, and high steroid dosage. However, this study did not compare female to male

patients. In contrast, Camilleri and Mallia (1999) compared the hospital records of men (N

= 7) and women (N = 51) with SLE on the island of Malta using the Chi-square test with

Yates correction for small numbers. They concluded that female patients had more

arthritis, myositis, neuropsychiatric manifestations (depression, psychosis and headache),

anemia, leucopenia and ENA positivity than did male patients. Further, women appeared to

have a higher mortality rate, with all six mortalities recorded occurring among females in

the sample despite the fact that the males had more severe disease due to organ

involvement.

The limitations of this study should be noted, however. The small, ethnically and

geographically restricted sample makes it difficult to generalize to wider populations.

Further, the 7-fold greater proportion of women (51) than men (7) in the sample makes it

difficult to compare mortality rates based on gender. That is, the mortality rate of women in

the sample was nearly 12% (11.7%). A comparable mortality rate among the seven males

in the sample would have resulted in less than one death (.823), which is impossible. The

authors provided no information about medical or psychopharmacological treatments in the

sample, so the impact of such factors on morbidity and mortality cannot be assessed.

Education and Depression or Anxiety

A higher level of formal education, less depression and compliance with medical

advice have been associated with improved outcomes in the treatment of patients with SLE.


27In a study of 180 lupus patients (164 female) admitted to an emergency unit during an 8-

month period, Rojas-Serrano and Cardiel (2000) compared the 49 (five male and forty-four

female) patients who were hospitalized to those who were not. Measures used included the

Spanish version of the Beck Depression Inventory (BDI) and the Arthritis Impact

Measurements Subscales for depression and anxiety. Stepwise multiple logistic regression

analysis was used to identify variables associated with hospitalization. Hospitalized

patients were statistically different from non-hospitalized patients in areas of less formal

education, poorer compliance, greater severity of disease, higher levels of depression, and

used lower doses of chloroquine. The three most important variables that were identified

with hospitalizations included higher physicians global assessment of disease severity ip =

0.00001), higher chronic damage index scores ip 0.01), and fewer American College of

Rheumatology criteria for SLE ip = 0.0001).

The authors noted that the association of depression with less education and

hospitalization was important because depression has been associated with poorer

outcomes in SLE. The authors hypothesized that depression may have a negative effect on

compliance with treatment and be associated with failed appointments, both of which can

reduce disease control. It is possible that lower educational attainment may contribute to

compliance problems if patients have difficulty understanding their illness and managing

their treatment regimens.

Limitations of this study were similar to others using correlational techniques in

that causation could not be inferred. However, the authors discussion of the possible effect


28of depression on compliance and disease management suggests an interesting avenue of

inquiry for further research.

Nationality and Depression or Anxiety

Ribosomal P protein is an intracellular protein that is attached to the ribosomes in

the cytoplasm. Antibodies (anti-P) penetrate the cell and interact with the ribosomal P

protein. This interaction may interfere with protein synthesis. It is unknown why the

autoantibodies develop (Sun, Tang, Lin, Wang, Sun & Liu, 2001).

Differing frequencies of depression in SLE patients have been associated with the

presence of anti-P antibodies and different ethnic groups. In a large multi-ethnic study of

the frequencies and clinical associations of anti-P in patients with SLE, Arnett, et al. (1996)

used Chi-square tests to compare anti-P-positive and anti-P-negative SLE patient

frequencies across ethnic groups. They found anti-P antibodies were found most frequently

in Chinese-American patients (36%) and least frequently in Bulgarian patients (6%). Most

other ethnic groups had a frequency of 13-20%. Further, neuropsychiatric symptoms such

as psychosis (n = 8, p = 0.005) and depression (n = 10, p = 3 X 10'5) were significantly

associated with anti-P antibodies. While 27% of patients with anti-P positive antibodies had

psychosis and/or depression, only five percent of the anti-P negative patients had these

symptoms. The researchers concluded that the anti-P response was significantly correlated

with diffuse central nervous system dysfunction.

Strengths of this study related to its very large sample size (394 patients) and the

ethnic diversity of the participants, unlike many other studies reviewed here. Because it

was focused exclusively on identifying a particular genetic factor in neuropsychiatric lupus,


29however, the study did not provide an account of other factors that may have contributed to

depression. Further, because only people with clinically diagnosable organic depression (as

opposed to the M l spectrum of depressive disorders (i.e., dysthymia, depression not

otherwise specified) were classified as depressed, it is possible that a number of depressed

individuals were not included.

Similar findings occurred in a study of psychiatric disorders among Malaysian SLE

patients. Chin, Cheong and Kong (1993) followed 79 patients in an out-patient SLE clinic

over a six month period. The purpose of the study was to determine the type and frequency

of psychiatric disorders, and any relationship between the duration of the illness, ethnic

group, medications, severity of SLE and social support system with the existence of a

psychiatric disorder.

The chi-square and /-test were used as tests of significance. Forty (50.6%) of the

patients were found to have a psychiatric disorder (dysthymic disorder, twenty-six; anxiety,

six; endogenous depression, five; dementia, three). Only one of the forty patients had been

treated for depression prior to the diagnosis of SLE. The presence of a psychiatric disorder

was associated with poorer family support, marriage or family discord and lack of a

confidant (p = 0.05), ethnicity and severity of SLE (p

> .05) were similar in the groups with and without psychiatric disorders. Patients taking

prednisone alone or with two or more other medications did not show an increased

incidence in psychiatric disorders.

One of the strengths of this study was the use of a standardized interview schedule

that can also be used for non-psychiatric populations. This study was not a longitudinal


30study and was designed to estimate the prevalence and types of psychiatric abnormalities at

the time the interview. One of the limitations of the study included the self-reporting of

psychiatric symptoms that could be exaggerated or falsified by the patient.

Conclusions

SLE is a devastating and potentially lethal autoimmune disease that primarily

affects women of childbearing years. Genetic, environmental, hormonal, and

immunoregulatory factors are involved in the disease process. Hormones, particularly

estrogens, are involved as well, and may explain the higher occurrence of SLE in women.

Further, the disease produces greater morbidity and mortality among Blacks and those of

lower SES, and appears to produce greater degrees of neuropsychiatric impairment,

including depression, in women than men and more in some ethnic groups than others. In

addition, level of education, social supports, marital status, and quality of family

relationships appear to play mediating roles in the expression of depression in this

population. No evidence was found to support the idea that psychological distress causes

increased SLE activity. Rather, psychological distress appears to increase in response to

disease flare-ups. Further, neuropsychiatric lupus (psychosis and/or depression) was found

to be significantly associated with the presence of anti-P. The anti-P response, which

occurred in approximately 15% of SLE patients, was correlated with diffuse

neuropsychiatric dysfunction. This response was found to be higher among Chinese

patients (36%).

Although depression and anxiety have been found to occur in patients with SLE,

what is not clear from these quantitatively oriented studies is the lived experience of


depression and anxiety in the SLE patient. How people with SLE experience depression

and anxiety is not known. The role of psychosocial factors in mediating symptoms of

depression and anxiety in SLE points to the need to examine their contribution. Finally, the

possible co-morbidity of anxiety and depression in this population needs to be explored.


32CHAPTER THREE

Methods

Context

The goal of this study was to develop an understanding of the experience of

depression/anxiety in patients with Systemic Lupus Erythematosus (SLE). I initially

became interested in the occurrence of depression in SLE patients because of my friendship

with a woman who has the disease and who has experienced problems with depression.

This raised awareness of the emotional problems of SLE patients led to the interest that has

initiated this study. Further, my wish to find ways to help a friend led to an awareness of

the possible needs of other patients as well as to a desire to increase my understanding of

the psychological affects of SLE.

Research Design Overview

A phenomenological interpretative design was used to study the lived experience of

depression and anxiety in the patient with SLE (Heidegger, 1962). The researcher attempts

to gain knowledge and understanding from the perspective of the patient using the

philosophical framework of phenomenology.

Phenomenology

Phenomenology was introduced originally by Husserl, a German philosopher and

mathematician, and was further expanded by Heidegger to include hermeneutics

(Heidegger, 1962). Hermeneutic phenomenology emphasizes human understanding


33through the interpretation of a persons lived experience as well as discovering the essences

of the lived experience (Byrne, 2001). Heideggerian phenomenology also allows

researchers to bring their own experiences, understanding, and values to the research

process, and through reflection, to become aware of their assumptions. This method seeks

to both describe as well as to interpret a phenomenon and is intended to include the reader

of the research as an interpreter (Byrne, 2001).

Phenomenology was a response to the philosophical stance that truth could be

representational. In certain philosophies, truth is seen as corresponding directly to the

features of the world represented by language. Merleau-Ponty (1962) developed a theory of

perception that rejected the representational account of perception in favor of a

phenomenological description. In his view, the representational account left out the

experience of the body, which is primary.

Beginning with a phenomenological base that can be traced back to Merleau-Ponty

(1962), Van Manen (1997) created a research methodology using phenomenology for

qualitative research studies. The everyday lived experience, as Van Manen (1997) termed

it, helps to place people in their world and gives the best potential for understanding them.

Individuals each have a lifeworld, and the qualitative researcher using Van Manens

approach tries to identify and reflect upon the lifeworld of the individual as it is perceived

by or actively created by him or her.

Van Manen (1997) provided a process for the researcher to follow that begins by

identifying the nature of the lived experience and orienting oneself to the phenomenon. At

that point, the qualitative researcher formulates the phenomenological question, looking at


34assumptions and pre-understandings. In the investigatory stage, the researcher explores

experience as it is actually lived by people. Personal experience is used as the starting point

and source of data, and there are several possible choices for the phenomenological

researcher to gather data. In the case of the present research, the personal interview was

chosen as the means of obtaining accounts of lived experience. After the data were

collected, it was analyzed to identify themes and meanings, which then led to writing about

the research data.

Participants

The target population consisted of individuals who were members of the Lupus

Foundation of Alaska who had been diagnosed with SLE and who had experienced

depression/anxiety. After receiving permission (Appendix A) from the Executive Director

of the Lupus Foundation of America Alaska Chapter, information and an explanation about

the study were provided at a monthly meeting of the Lupus Foundation of Alaska using a

flyer (Appendix B) that was posted at the meeting place before the group arrived. The flyer

explained that the participants would be asked to describe their experience with depression

and anxiety. Participants were asked to contact the researcher if they were interested in

participating in this study. Individuals were included in the study if they were over the age

of 18 and had experienced depression or anxiety since diagnosis with SLE. An interview

was arranged with the individuals who had contacted the researcher and indicated interest

in participating in the study.

Interview Guide.

Appendix C shows the interview guide that was used in the present research.


35The interview guide was designed to ensure that the same area of inquiry would be covered

in interviewing each participant.

The open-ended question approach was specifically chosen as the format for the

main interview because it was a less restrictive method when compared to the standardized

interview. The interview guide sheet approach balanced flexibility and structure to produce

data. This approach was chosen to provide a richer depth of data than would be possible

using a more restrictive interview methodology (Crist and Tanner, 2003).

Interviews

Interviews were conducted after informed consent (Appendix D) has been obtained

from each participant. All interviews were audiotaped, and consent was obtained before

audiotaping.

The interview consisted of two parts. Participants were asked to describe their

experience with depression or anxiety and were asked to clarify or elaborate on their

responses. During the second part of the interview, demographic information about the

participants was collected. The interviews lasted between one-half hour and one hour.

Following transcription of the interviews, each participant was mailed a copy of

her own interview and asked to review and make any changes that are necessary. All

participants were offered a follow-up interview to be held at the conclusion of the data

analysis and interpretation. At that time, the results of the study were shared. Participants

were also advised of resources should they decide to further explore any issues that become

significant for them. Such resources included self-help reading material, appropriate

counseling services, and any other options deemed necessary on a case-by-case basis.


36Protection of Research Participants

After receiving approval from the Institutional Review Board for Human Subjects

Research at the University of Alaska Anchorage, the researcher obtained permission from

the director of the Alaska chapter of the Lupus Foundation to distribute information

regarding the study at a regular meeting of the Foundation. Each participant was informed

that all information would be strictly confidential and no identifying information would be

available on the audiotapes or transcripts. Data obtained were kept in a locked cabinet that

was accessible to only the researcher and the thesis committee. At the conclusion of the

research study, the audiotapes were returned to the participants or destroyed at their wish.

Because a history of depressive or anxious symptoms is a criterion for inclusion in

the study, this research presents special ethical issues that were dealt with as follows. If

participants responses to the interview indicated the presence of current depression or

anxiety, they would have been advised of resources and referred to their physician for

treatment. If a participant admitted to active suicidal thinking during the interview, the

interview would have been stopped and the participant guided into emergency care. No

participants demonstrated or voiced any suicidal ideation during the interviews although

most admitted to current depression that was being treated with medication.

Data Analysis

There were two phases of data analysis. First, demographic information was

tabulated and summarized. Second, a hermeneutic phenomenological approach was used to

isolate themes pertaining to depression and anxiety in patients with SLE (Heidegger, 1962).

This approach allowed the researcher to examine the interview text as a whole while also


37allowing the interpretation of the experience. Through reading and rereading each

interview file, the researcher's reflection became an integral part of the process. Reflection

provided insight into the experience of depression and anxiety by helping the researcher

move beyond the appearance of an idea to the meaning of an idea while unraveling or

discovering themes embedded in the interviews (Byrne, 2001). Themes are essential or

universal qualities that make a phenomenon what it is and without which the phenomenon

could not be what it is. Themes among the interviews were then examined for

commonalities and differences (Byrne, 2001).

As analysis progressed, common themes surrounding the participants emotional

experience were uncovered. The researcher continued to reflect on relationships between

themes and the overall essence of the depressive experiences for patients living with SLE.

This process involved reading, thinking, writing about the data, returning to the original

data and tapes, discussing the data with colleagues, verifying information with the

participants if necessary and finally developing an overall description of the participants

experience of depression and anxiety that integrated major themes (Byrne, 2001).

Trustworthiness

Rigor, or trustworthiness, in qualitative research, is concerned with ensuring the

quality of the research process and results while maintaining the necessary flexibility.

Lincolns (1995) criteria for quality in qualitative research were used as a guideline to

uphold trustworthiness in this research. Lincolns (1995) criteria include standards for

judging the quality in the inquiry community, positionality, community as arbiter of


38quality, critical subjectivity, community voice, reciprocity, sacredness, and sharing the

perquisites of privilege.

Lincolns first criterion of standards forjudging quality in the inquiry community

states that strict adherence to the accepted standards within the research community is

followed. The standards set out by the University of Alaska Anchorage, School of Nursing

Graduate Handbook (2002) as well as communication with the thesis committee were

adhered to throughout the research process. The Publication Manual of the American

Psychological Association was used to guide all written information.

Positionality requires that the researcher maintain honesty about their own position

or connection to the phenomenon being research as well as remain aware of the possibility

of bias. Detachment and objectivity are seen as barriers to quality and rigor in qualitative

research. As a nurse who had a friend with SLE and depression, I recognized and described

my background and context as it related to this research. Some of the interview data

obtained differed from what I had previously held as the truth. The phenomenological

method allowed me to understand the reality of the participants. Positionality also requires

that data or texts be recognized as truth when offered. Throughout the interview process, I

maintained awareness of my own possible bias and preconceptions. Additionally, I

recognized that my personal data could be incomplete or inaccurate.

The third criterion, arbiter of quality, requires that the researcher recognize the

research should address community needs and assist the community in which it originated

as it belongs to the community. The benefits of this research reach beyond the researcher


39needs and will return to the community as a deeper understanding of the lived experiences

of SLE patients who suffer from depression or anxiety.

Attention to voice gives the participants who were previously unheard an

opportunity to have their voices heard. A verbatim transcript of the interviews and allowing

the participants the opportunity to read and to make revision or additions to their transcripts

were used to address voice. Attention to voice also requires that the researcher become

involved with participants and encourage them to end their silence. Through participation

and reflection of the data, participants voices were heard in this research. Verbatim quotes

were provided to illustrate the experience of depression and anxiety.

Lincolns fifth criterion addresses the issue of critical subjectivity. An awareness of

ones own thoughts and beliefs is necessary to allow the meaning of the data to become

evident. Awareness of ones personal beliefs is also necessary to begin to understand the

emotional status of others. Frequent rereading of field notes and transcripts as well as close

contact with the thesis committee allowed me to remain critically subjective.

Reciprocity acknowledges that there is a relationship between the researcher and

the participants in the study that should include trust, and caring. Mutual respect increases

the quality and rigor in qualitative research. To meet this criterion and to improve the

quality of research, every effort was made to treat each participant with caring and respect

throughout the research process. The on-going protection of the participants and their

privacy were strictly maintained. No identifying information was used and all interview

material was kept in a locked cabinet.


40Lincolns seventh criterion is sacredness and is related to the concept of reciprocity.

Sacredness involves the recognition that science has a sacred aspect that includes a sincere

concern for dignity, justice and respect. To address this criterion, I treated each participant

with respect, allowed their voices to be heard accurately and acknowledged the honor of

hearing the participants experiences.

Lincolns final criterion is sharing the perquisites of privilege. The sharing of

experiences by the participants and their involvement in furthering the body of knowledge

in this research study was acknowledged and recognized. All of the participants were given

the findings if they desired and were thanked for their participation in this study and for

graciously sharing their experiences. It is hoped that the participants received satisfaction

from sharing their experiences with depression and anxiety.

Additionally, an audit trail was maintained to record insights and thoughts

throughout the process. Rereading field notes, transcripts and self-reflection as well as

interaction with the thesis committee were used to maintain quality in this research.


41CHAPTER FOUR

Findings

Introduction

This chapter is organized as follows: first, a general description of the sample

(participants) is given. Second, the common themes that describe the experience of

depression and anxiety for lupus patients are discussed and illustrated using the individual

participants language.

Description of Participants

A total of 8 women, aged 45 to 68 (Mean = 53) diagnosed with SLE between 2 and

13 years previously, were interviewed by the researcher. The educational level of the

participants ranged from a high school diploma to a masters degree. Six of the participants

were currently married and two were divorced; each of the participants had at least one

child. Three of the women were currently working part-time and three were disabled. All of

the participants were currently taking at least one anti-depressant. All of the interviews

were conducted either at the participants home or at a place designated by the participant.

Results of Data Analysis

The responses of the participants and their experience with depression and anxiety

were analyzed using an interpretive descriptive process. The participants words expressed

the depth and range of emotions, changes, and difficulties they have experienced since the

diagnosis of SLE. Their stories provided a wealth of information from which seven themes

emerged that are identified using the participants own words as a title for each theme.


42Table 1. Emerging ThemesI ts just a black, depressing disease.It just felt like my life was over I should be able to do thatI never really had problems with anxiety...until I got sick I dont do things that I want to do I feel like they are getting short changed What was going to happen to me

The disease SLE is associated with many different physical and emotional

difficulties; the diagnosis of SLE brings not a cure but the certainty of further disability,

suffering and losses. Some participants received the diagnosis as a death sentence and

were relieved to find, with more information, that contemporary treatments can slow the

progress of their illness and enable them to live longer. Depression and/or anxiety were

common problems for the participants, all of whom have wrestled with one or the other,

sometimes both. Factors that were identified in the expression of depression and anxiety

included a disruption in the way they lived, a change in their ability to enjoy customary

activities, a change in the relationships with their spouses, children or friends, a loss of

control over their lives and the trepidation of an unknown future caused by their disease.

Never far from the experience of depression and anxiety for these individuals was the

emotion of fear, which expressed itself in a variety of ways. Some participants experienced

panic attacks while others developed fear of social situations because their illness made

them feel or behave differently than normal people.

Participan

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