Abstract

This article examines needs and concerns of individuals with lupus and the correlates of self-reported emotional distress. A survey tested the following hypotheses: Individuals with lupus report a high level of emotional distress that is associated with (1) their perceived levels of social support, (2) the self-reported frequency with which they require assistance in their daily living and (3) the amount of time from initial symptoms to diagnosis. 1,776 individuals participated. More than 95% of the individuals are diagnosed with systematic lupus erythematosus (SLE). Multivariate analyses confirm individuals report a significant level of stress associated with the frequency of needing assistance in daily life. The findings do not support a strong relationship between perceived social support and reported stress. Similarly, there was no strong association between reported stress and the length of time lapsed from initial symptoms to diagnosis. Implications for mental health practice are also discussed.


Scholarly literature recognizes that chronic illness significantly impacts the bio-psycho-social functioning of individuals and their families (Fekete, Stephens, Mickelson & Druley, 2007). The Partnership for Solutions, a national program funded by the Robert Wood Johnson Foundation, and based at Johns Hopkins University, reveals almost half of all Americans, 133 million people, live with a chronic condition, and that this number is expected to increase to 157 million by 2020 as the population ages (2004). Giffords (2003) identifies a diagnosis of a chronic illness or disability as a significant life event. This article focuses on the psychosocial needs of individuals with the specific condition of lupus by exploring individuals' levels of reported emotional distress and the relationship of this to psychosocial factors, including family support.

Understanding Lupus

Lupus is a chronic autoimmune disease that predominately affects women in the childbearing years. This disease causes inflammation throughout the body, which may be mild, but may also result in serious and life threatening problems (Lupus Alliance of America, 2012). Wallace (2000) explains that, in an autoimmune disease such as lupus, "the body overreacts to unknown stimulus and makes too many antibodies or proteins directed against body tissue" (p. 5). There are many kinds of lupus. Systemic lupus erythematosus (SLE) affects multiple body systems such as the joints, skin, and major organs (e.g., heart, lungs, kidneys, brain). Other types of lupus include discoid lupus erythematosus (DLE) (skin), subacute cutaneous lupus erythematosus (skin sores) and neonatal lupus, which affects newborns. There is also a type known as drug-induced lupus, caused by medication (National Institute of Arthritis and Musculoskeletal and Skin Diseases [NIAMS], 2009). Physicians use the 1997 Update of the 1982 American College of Rheumatology (ACR) Revised Criteria for Classification of Systemic Lupus Erythematosus as a starting point when making a diagnosis of SLE, the most common type of lupus. Common symptoms include:

Fever, fatigue, and weight loss; Arthritis lasting for several weeks in multiple joints; Butterfly-shaped rash over the cheeks or other rashes; Skin rash appearing in areas exposed to the sun; Sores in the mouth or nose lasting for more than a month; Loss of hair, sometimes in spots or around the hairline; Seizures, strokes, and mental disorders (depression); Blood clots; Miscarriages; Blood or protein in the urine or poor kidney function; Low blood counts (anemia, low white blood cells, or low platelets). Individuals may also have chest pain when breathing deeply, heartburn, abdominal pain, and poor circulation to the fingers and toes (Ginzler, & Tayar, 2010, p. 2-3).

Currently there is no cure for lupus, so physicians typically treat individuals' symptoms. For most, the disease is mild, though it can be fatal. However, with the advances in medicine and the availability of a variety of effective treatments, with early diagnosis, good medical care, and by following doctors' instructions, most people with lupus will have mild cases and normal life spans. Even those individuals who have severe recurrent attacks, called flares, can be treated effectively (Lahita as cited in Giffords, 2003).

Emotional distress and Chronic Illness

While each person reacts differently to living with a chronic illness such as lupus, researchers have found that an estimate of more than half of all individuals with this disease experience emotional challenges specifically associated with the disease (Phillips, 1991). Emotional reactions may be connected to the initial diagnosis, such as reflecting on what life is like with the disease compared to what it was like before or thinking about the future or managing the day-to-day challenges, or some combination of these experiences (Phillips, 1991). Iverson (1995) notes that individuals with SLE often experience depression, anxiety, and low self esteem, associated with "loss of control and independence" (p. 41). Children also experience particular psychosocial difficulties. Louthrenoo, Krairojananan, Chartapisak and Opastirakul (2012) note that while children with lupus do not exhibit significantly more emotional difficulties (internalized or externalized) compared to their healthy peers, they do experience significant difficulties in relationships with peers in terms of social functioning and competency.

Many factors (epidemiologic, socioeconomic, and psychosocial) affect individuals' quality of life, survival, and disease management (see Aberer, 2010 for a full discussion). In order to help individuals with lupus most effectively, mental health providers, physicians and other health care workers should have a clear understanding about the psychosocial impact of the disease to proficiently address the challenges often associated with living with lupus (Aberer, 2010; Auerbach & Beckerman, 2011; Giffords, 2003). Treatment focused on coping and social support may be the most useful approach for individuals with lupus. Interventions include mechanisms designed to improve individuals' problem-solving skills and to decrease their emotional responses to stress (Kozora, Ellison, Waxmonsky, Wamboldt & Patterson, 2005), as stress is a common factor associated with lupus flares (Lahita & Phillips, 1998). In a study of individuals with mild to moderate SLE, Kozora et al. (2007) found there was greater psychological distress in those with SLE compared both to Rheumatoid Arthritis (RA) and to healthy individuals who served as control participants. Studies have found that the relationship between emotional distress, treatment adherence, and disease activity are complex (Duvdevany, Cohen, Minsker-Valtzer, & Lorber, 2011). It is therefore important to explore this complex relationship by examining the reported experiences of emotional distress as it relates to other factors such as social support and concerns regarding everyday living.

Impact of Chronic Illness on Daily Living

Often, a diagnosis of a chronic illness requires modification in aspects of individuals' daily functioning. This may come about because of the advice of a physician, or because the disease directly impedes individuals' ability to engage in their regular recreation or social activities, including their most basic activities of daily living (ADL), such as bathing, dressing, and managing mobility. It may also require that individuals modify their instrumental activities of daily living (IADLs) such as preparing meals or balancing their checkbook. Many of these activities traditionally define how individuals see themselves (Giffords & Eggleton, 2005). This is also true for lupus, a disease that can affect individuals' daily lives in a variety of ways depending on individuals' specific symptoms.

Asking for help from friends and family members may be difficult. Understanding individuals' perception of social support, including factors associated with caregiving, is important to help provide insight into the concerns and needs of individuals with lupus. Pitzele (1986) identifies ways in which the caregiver relationship is very complex. For individuals needing assistance, allowing someone to help may feel dehumanizing and humiliating; conversely, caregivers may feel guilt and obligation, despite what the author calls the romanticized notion of "selfless love transferred to another individual in need" (p. 156). Pitzele also acknowledges that sometimes there are differences in expectations for both the caregiver and the individual needing care. Consequently, daily activities that require assistance because of pain, for example, may impact the individual and family members or friends, thereby resulting in emotional distress. Furthermore, because of the nature of the disease, individuals with lupus are likely to experience illness uncertainty (IU). Illness Uncertainty refers to a cognitive interpretation of, and response to, a medical condition that is characterized by diagnosis ambiguity, lack of cure, unpredictable exacerbation of symptoms, and functional impairment (Michel & Braden as cited in Mullins et al., 2001), is associated with increased stress. IU theory additionally suggests that individuals with a chronic illness in which there is significant diagnostic or prognostic uncertainty are likely to have difficulty adjusting to the illness. Two dimensions of this theory "are 'lack of information about diagnoses or severity of the illness' (LIDSI) and 'complexity regarding the health care system' (CRHCS)" (Fishbain, Bruns, Disorbio, Lewis, & Gao, 2010, p. 658). Lupus typically involves both of these elements, which are likely to result in emotional distress.

Lupus, then, affects all aspects of individuals' lives, including psychosocial systems, which, in a review of the research, Seawell and Danoff-Burg (2004) found are essential to consider when addressing the care of patients with SLE. They offered several recommendations for clinicians, one of which suggests understanding a contextual approach to treatment that considers external factors, such as social support that may affect individuals' adjustment to illness. In their research on psychosocial functioning of children with lupus, Louthrenoo et al. (2012) explain parents report that their children with lupus experience difficulties in social functioning. Louthrenoo et al. recommend that social competence in children with lupus be monitored and addressed to improve quality of life for this population. The work by Fekete et al. (2007) on couples provides additional evidence that the meaning individuals attach to their partners' support efforts manifests itself in recipients' psychosocial well-being. Fekete et al. found there is a relationship between the degree to which support efforts from the partners of individuals with chronic illness are perceived as responsive to individuals' emotional needs, and the experience of depressive symptoms. Additionally, emotional distress significantly predicted the levels of disease activity and functioning in a preliminary study of individuals with lupus. Duvdevany's et al. research (2011) further illustrates the major role that emotional distress has on the severity of symptoms and the level of functioning among individuals with lupus.

Current Study

Building on existing literature, the present research focused on understanding the needs and concerns of individuals with lupus by accessing a large sample of patients and ascertaining their experiences along three main domains: (1) the individuals' perceptions of their social support (2) the symptoms and medical experience of living with lupus and (3) their concerns regarding everyday living. This article focuses on describing patients with lupus and examines their level of reported emotional distress and its correlates. Accordingly, the current study set out to test the following hypotheses:

The current study tests the following hypotheses: (1) individuals with lupus will report a high level (measured by a ranking-order on a Likert scale) of emotional distress. This is operationally defined along three separate indicators: self-reported presence of symptoms of anxiety and/or depression; a presence of co-morbid diagnosis of anxiety as reported by the participant; and the participants' self-rated level of stress due to life with lupus (measured by a ranking-order on a Likert scale). (2) Self-rated level of stress due to life with lupus will be correlated with the level of participants' perceived support (from family and friends, respectively), the self-reported frequency of needing help in daily life and diagnosis ambiguity. The latter is operationally defined here as the amount of time that has reportedly elapsed from the time of experiencing symptoms initially to the time of diagnosis. (3) Participants who have and have not reported presence of depression or anxiety will differ in their level of perceived support, reported frequency of needing help in daily life and diagnosis ambiguity (e.g., amount of time that has reportedly elapsed from the time of experiencing symptoms initially to the time of diagnosis).

Method

Participants

This study utilized a non-probability availability sample. Participants were recruited via the Lupus Alliance of America (LAA) national newsletter, which announced the study and included the URL address where the on-line survey could be found and completed. Additionally, utilizing a snowball sampling method, the LAA distributed hard copies of the organization's newsletter, which also included the URL address, along with hard copies of the survey to interested individuals in the waiting rooms of physicians' offices throughout the country. Ultimately, 1776 participants responded to the survey, 97% of whom were females.

Nearly 95% of the participants are from the United States of America, with a heavy representation of New York and Michigan residents (28% and 10% of the sample, respectively). Almost 5.5% of the participants reside internationally, mostly in Canada, but with other countries across the globe represented as well. Ninety seven percent of the participants are adults with a self-reported diagnosis of lupus and less than 3% are parents who have responded on behalf of their children who have a diagnosis of lupus. The mean age of the participants is 45 years old ranging from 6 to 89 years of age. Age at the time of diagnosis ranged from 3 years old to 78 years old with a mean age of 34 at time of diagnosis. More than 95% of the participants report that they (or their child) are diagnosed with systemic lupus, nearly 4% report that they are diagnosed with discoid lupus and the remaining 1% report that they or their child are diagnosed with drug-induced lupus.

Questions regarding participants' race and ethnicity in the present study followed the structure of the most recent (2010) United States Census, as defined by the Federal Office of Management and Budget (OMB) and the United States Census Bureau. Thus, according to the authors' best knowledge, this is the first time that a study on lupus considers race and ethnicity as separate and distinct variables, with specific questions that identify Hispanic or Latino origin affiliation of the participants, if applicable. In addition to their race or races, all respondents self-reported membership in one of two ethnicities: "Hispanic or Latino Origin" and "Not Hispanic or Latino Origin." Accordingly, most of the participants categorize themselves as not of Hispanic or Latino Origin (93%). Additionally, 86% of the participants categorize themselves as White, 10% as African American or Black, and the rest of the participants affiliate themselves with the following racial groups: West Indian or Caribbean (1%); American Indian or Alaskan Native (3%); Asian (3%); Native Hawaiian and Pacific Islander (.6%). Two percent of the participants categorize themselves as "other," usually indicating a mixed heritage that includes two or more racial groups. It is worth noting that participants had the option of selecting multiple racial affiliations.

More than 60% of the participants report that they have acquired post secondary education. Of these, 23.5% report obtaining a college degree; 13.5% report earning a Master's degree, and 2.3% report earning a doctoral degree. However, only 32% of the participants report that they are working full time. Thirteen percent report that they are working part time, and more than a third of the sample (36%) report that they are no longer able to work due to lupus. About 20% of the sample report that they are not working due to reasons other than lupus or because they are attending school. Almost 75% of the participants report that they are living in a 2-4 person household. Only 16% report that they are living alone. Nearly 57% of the participants report that they are married and additional 5.5% of the participants report that they are in a relationship and living together. About 3% of the participants report they are widowed, nearly 11% of the participants report that they are divorced, and 2.5% report that they are separated. The remaining participants report that they are single and have never married. Nearly 47% of the participants report an annual household income of less than $50,000. About 20% of the participants report an annual income of more than $100,000.

Procedure

The study was announced via the LAA newsletter. Prior to the circulation of the announcement, the LAA contacted the leadership of various lupus organizations across the country and informed them of the purpose of the study. They were alerted to the forthcoming recruitment announcement and were assured that they would not be asked to provide contact information for their members, that the study ensured confidentiality and anonymity and that the results would be shared, in the aggregate, with any interested group. Participants were then recruited via an announcement that was included in the LAA newsletter or that was available in hard copy in treating physicians' offices, to reach potential participants who are not members of the LAA or do not have access to the internet. The survey instrument was available through the same mechanisms with the option of completing the questionnaire electronically via a link to StudentVoice that was provided in the announcement, or through a hard copy with a pre-paid envelop in order for participants to return the survey instrument to the researchers. StudentVoice is a web-based platform that provides tools for assessment such as online surveys.

Ultimately, 1427 completed the survey online and 349 completed hard copies, which were submitted to the investigators, and a volunteer associated with the LAA entered them into the StudentVoice database to ensure consistency in analyzing the results.

Instrument

The Lupus Alliance of America Survey, used for this study, is an original self-report instrument designed for this research and is the result of collaboration between the authors and the LAA. The overall purpose of the survey is to describe the population of individuals living with lupus. The survey has been designed to be completed by people living with lupus and for parents to answer on behalf of their young children who are diagnosed with lupus. The survey addresses several content areas: (1) participants' socio-demographic profile, (2) the participants' perceptions of their social support systems, (3) the participants' symptoms and medical experiences and (4) the participants' concerns regarding everyday living. The survey utilizes different scales of measurement for different items. It includes nominal response options (e.g., listing symptoms and co-morbid conditions such as depression and anxiety); ordinal, Likert-scale-like response options (e.g., rating level of stress due to life with lupus); ratio response options (e.g., number of years from initial symptoms to time of diagnosis); and open-ended responses (e.g., participants' narrative comments regarding medication compliance - not addressed in the current analysis).

Items that address the socio-demographic profile include queries regarding participants' gender, race, ethnicity, age, household structure, and income. These items derive their content validity from the classification used by the U. S. Census Bureau. Items that address participants' social support systems and areas of concerns regarding everyday living derive their content validity from the literature on psychological distress of individuals with chronic illness (e.g. see Fekete et al., 2007; Pitzele, 1986). Examples of these items include the degree of support available from family and friends, the perceived frequency of requiring help in everyday life and the degree of stress experienced due to living with lupus.

The survey also includes several content areas that are not being reported in this manuscript. These items address the medical experiences of living with lupus and they derive their content validity from the 1997 Update of the 1982 American College of Rheumatology (ACR) Revised Criteria for Classification of Lupus. Additional items address participants' financial resources, availability of medical insurance, and perceived impact of lupus on participants' work life. The instrument has been pre-tested twice: first, upon completion of the survey construction, board members of the LAA with a clinical diagnosis of lupus responded to the survey and commented on its content. Accordingly, the researchers made adjustments to ensure clarity of questions and appropriate response options. Second, upon uploading of the survey on StudentVoice, board members of the LAA with a clinical diagnosis of lupus responded to the survey to ensure that the online version is user friendly. Adjustments were made to ensure ease of use of the online interface.

Statistical analysis

Data were analyzed to identify correlations among variables. However, to avoid error associated with multiple calculations of correlations, hierarchical regression analysis was used to test hypothesis 2, although no temporal order of variables was predicted. An independent t test was used to test hypothesis 3 to accommodate the nominal coding of the reported presence of depression and anxiety.

It is important to note that several variables in the model were skewed. Despite the application of the variable-transformation procedures, the assumption of normalcy was never fully met for the following variables: reported stress level due to life with lupus; number of years from initial symptoms to diagnosis; and the degree to which the participants perceive that their family members provide support to them. Results associated with these variables should be interpreted with caution.

Design

This study utilizes a mixed-mode survey design, as defined by Grinell and Unrau (2008, p. 300), employing a combination of electronic and hard copy surveys.

Results

The findings support hypothesis 1. Participants report a high level of emotional distress: 64% report that they experience anxiety symptoms, although only 22% report a clinical diagnosis of anxiety disorder. Sixty percent of the participants report that they experience symptoms of depression. On average, participants report experiencing a moderate level of stress due to life with lupus (M = 5.65; sd = 1.31). A two-tail t test indicates that participants who report experiencing anxiety, depression, and being diagnosed with an anxiety disorder, also report, on average, a higher level of stress due to life with lupus compared to those who do not report experiencing anxiety (M = 5.89 > M = 5.14), depression, (M = 5.94 > M =5.13) and who are not diagnosed with an anxiety disorder (M = 6.06 > M = 5.52) (t [anxiety symptoms] =11.45, p = .00; t [depression symptoms] = 12.76, p = .00; t [anxiety disorder] = 7.26, p = .00).

Hierarchical regression analysis, utilizing a two-tail test for the critical value, partially supports hypothesis 2. Perceived support from family and friends, as well as frequency of needing help in daily life, emerged as significant predictors of self-rated level of stress (F (3,1648) = 18.01, p < .001). Perceived support from family and friends, respectively, were negatively correlated with reported stress level, (r = -.098, p < .001; r = - .102, p <.01). However, each of these variables contributed only 1% to the variability in reported stress due to life with lupus and, after controlling for the other variables in the model (e.g., perceived frequency of needing help in daily life and diagnosis ambiguity), neither emerged as a significant predictor of reported stress (B = -.039, p = .262). Thus, the number of years from initial symptoms to diagnosis, although positively correlated with reported stress level (r = .053, p = .033), has not emerged as a significant predictor of stress due to life with lupus (B = -.002, p = .724). On the other hand, frequency of required help with daily tasks and chores is positively correlated with reported stress due to life with lupus (r = .42, p = .00) and after controlling for the other variables in the model (e.g., perceived support from family and friends, respectively, and diagnosis ambiguity), it has emerged as the strongest predictor of perceived stress due to life with lupus (B = .43, p < .001). Reported frequency of required help is responsible for nearly 17% of variability in reported stress (F (1,1217) = 23.701, p = <01.).

The results partially support hypothesis 3. On the average, participants report that their family and friends have been a moderate source of support for them (M = 3.2 and 2.8, respectively). An independent t test examined the differences in perceived degree of support from family and friends between participants who did and did not endorse these indicators of emotional distress: experiencing symptoms of anxiety and/or depression; and/or a formal diagnosis of anxiety. The results indicated statistically significant differences in perceived level of support among these groups (see table 1). However, as evident in table 1, the effect size of these observed differences is small to medium, indicating that participants who did and did not report depression and anxiety perceived comparable levels of support from friends and family. Possibly, the significant t value represents a Type I error rather than an actual difference among participants.

Table 1
Emotional Distress and Emotional Support from Family and Friends

Reported Symptoms of Anxiety

 

M1

M2

t

ES

Degree of Support from Family

3.13

3.35

(1165) - 4.72, p = .00

.24

Degree of Support from Friends

2.75

2.93

(1095) - 3.59, p = .00

.2

Reported Symptoms of Depression

 

M1

M2

t

ES

Degree of Support from Family

3.11

3.36

(1660) - 5.21, p = .00

.26

 

Degree of Support from Friends

2.72

2.99

(1226) - 5.5, p = .00

.3

Reported Diagnosed Co-morbid Anxiety Disorder

 

M1

M2

t

ES

Degree of Support from Family

3.03

3.25

(586) - 3.82, p = .00

.24

Degree of Support from Friends

2.68

2.85

(607) - 2.9, p = .00

.18

Note. M1 = yes; M2 = no

On the average, participants reported that they needed help with tasks and chores 1-3 times a month (M = 2.47). An independent t test examined the differences in frequency of requiring help with tasks and chores between participants who did and did not report experiencing symptoms of anxiety and/or depression and/or a clinical diagnosis of anxiety. The results indicated significant differences in frequency of required help among these groups (see table 2). The effect size of these differences is large, suggesting that frequency of requiring help with tasks or chores is greater for participants who experience anxiety and depression.

Table 2
Emotional Distress and Frequency of Required Help with Tasks or Chores

Reported Symptoms of Anxiety

 

M1

M2

t

ES

Frequency of Required Help

2.64

2.13

(1652) 8.52, p = .00

.46

Reported Symptoms of Depression

 

M1

M2

t

ES

Frequency of Required Help

2.68

2.11

(1652) 9.80, p = .00

.57

Reported Diagnosed Co-morbid Anxiety Disorder

 

M1

M2

t

ES

Frequency of Required Help

2.97

2.32

(653) 10.02,  p = .00

.65

Note. M1 = yes; M2 = no

Finally, participants reported an average of 6.8 years between the time of initial experience of symptoms and time of lupus diagnosis. An independent t test indicated no significant differences in average number of years to diagnosis between participants who did and did not report experiencing symptoms of anxiety and/or depression and/or a formal diagnosis of anxiety (t anxiety (1250) = -.728. p = .467; t depression (1250) = -.35, p = .404; t anxiety disorder (640.21), p = .952).

Discussion

This study addresses the psychosocial needs of individuals with the chronic condition lupus through an exploration of the relationship between participants' reported level of emotional distress and psychosocial factors such as support from families and friends. The intent is to gain insight from participants about the unique issues associated with stress due to life with lupus.

The findings fully support hypothesis 1. Consistent with previous literature that links chronic illness with emotional distress (e.g., Kozora et al., 2007), the participants in this study reported experiencing a moderate level of emotional distress, and the majority of them reported experiencing symptoms of anxiety and depression. Furthermore, participants who reported experiencing anxiety and depression also reported significantly higher levels of stress compared to participants who did not report experiencing anxiety and depression.

Additionally, the findings partially support hypothesis 2. Frequency of required help in daily life contributed significantly to reported stress due to life with lupus. Although these findings do not establish a causal relationship, it is possible that, as suggested by Pitzele (1986), participants who need frequent help may feel frustrated and humiliated that they are dependent on others as a result of their illness, which contributes to their overall level of stress. This is also consistent with Iverson's report (1995) that lack of independence in individuals with lupus is associated with low self-esteem.

While participants reported that their family and friends were moderately supportive, this contributed very little to the variability in participants' level of stress due to life with lupus. While others (e.g., Fekete et al., 2007) have documented the relationship between emotional distress and support from family and friends, the current findings do not strongly support this relationship. Instead, the results imply that participants' stress relates to their sense of dependency on family and friends. Moreover, in contrast to previous findings (e.g., Fishbain et al., 2010), the length of time between initial symptoms and subsequent diagnosis did not play a role in participants' level of stress due to life with lupus in the present study. Since the study targeted individuals with a reported existing diagnosis, it is possible that participants were not experiencing stress associated with diagnosis ambiguity as measured by length of time between initial symptoms and diagnosis at the time they completed the survey.

The findings partially supported hypothesis number 3. The results indicate that participants with or without depression and/or anxiety reported a comparable level of support from family and friends, and no difference in number of years between initial symptoms and diagnosis. However, participants who reported being depressed and/or anxious also reported needing help significantly more frequently than participants who did not report being depressed and/or anxious.

This study offers a new perspective on individuals' emotional responses to life with lupus, and highlights internal cognitive interpretation processes, rather than external factors in individuals' environment that may shape their emotional needs. The results of the current study are unlike previous findings regarding the role of social support in response to lupus (e.g., Duvdevany et al., 2011; Fekete et al., 2007). The current study suggests the possibility that emotional distress among individuals with lupus may be associated with frustration and low self-esteem due to the need to ask for help from others, rather than to receiving the diagnosis itself. These feelings may exist regardless of the availability of social support.

Study Limitations

It is interesting to note that in the current study 86% of the participants categorized themselves as white. This is in stark contradiction to previous data about the prevalence of lupus among minority groups (e.g., see NIAMS, 2011). It is possible that the availability sampling method has resulted in a self-selection bias. In the future, it would be important to explore possible reasons for a differential response rate.

Additionally, while the findings are based on a large sample of participants from across the United States and international participants as well, the majority were from New York and Michigan (two large affiliate chapters of LAA). Moreover, while the Lupus Alliance of America Survey asked participants about their anxiety, it did not specifically ask questions regarding a formal diagnosis of depression, a common factor seen in lupus and other chronic illness. Furthermore, while the Lupus Alliance of America Survey asked participants how often they need someone to take over or assist them with tasks or chores when they are not feeling well, the survey did not probe for details regarding the type of tasks and/or chores. Finally, this study did not query participants about their level of self-esteem, or the specific coping mechanisms that they may use and which may be related to their capacity to deal with emotional distress. Future studies should examine these aspects of living with lupus.

Implications for Mental Health Practice

As suggested in the literature, mental health professionals who are working with individuals with lupus should have a basic understanding of the disease and have a sense of the related emotions that individuals and their family members encounter when learning to cope with this chronic condition (Auerbach & Beckerman, 2011; Giffords, 2003). The present study describes how Lupus affects individuals' physical, psychological, and social functioning. Accordingly, the findings of this study have implications for psychologists, social workers and other related professionals. The results highlight the need for mental health professionals to assist in developing effective coping strategies for their clients. Additionally, treatment should also focus on developing their clients' sense of self-efficacy to assist them reduce or cope more effectively with emotional distress. Furthermore, education days or workshops for individuals with lupus or their families may also assist this population to learn more about the disease, develop coping skills, and to access resources that may decrease feelings of stress and dependency. Attendees may also find it reassuring to connect with others with lupus or other family or friends of individuals with this disease, and thus, may find it useful to share their personal experiences or learn from others. The same is true for practitioners. New psychologists or social workers or those with limited or no experience working with this population may find it beneficial to attend this these types of forums to learn from individuals and their families and to connect with colleagues with more knowledge of the disease. The multidimensional nature of lupus suggests the depth and breadth of knowledge needed by practitioners when they are working with this group of clients and/or their families to ensure that clients perceive their practitioner supports them. Future research should examine the relationship between clients and practitioners to see whether this relationship correlates with clients' level of emotional distress (in either direction). While there have been medical advances, there is still no cure for this disease. Therefore, effective practice with this population must include gaining insight from participants about the unique issues associated with stress due to life with lupus.

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Endnotes

  1. The authors would like to acknowledge the Lupus Alliance of America for their facilitation of this research and for co-constructing the Lupus Alliance of America Survey and Bonnie Kapiloff Mamiye for her assistance with data entry.
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  2. Elissa D. Giffords, DSW, LCSW is Professor & Orly Calderon, PsyD is Associate Professor at LIU Post Social Work Department. Address correspondence to Elissa D. Giffords, DSW, LCSW 720 Northern Blvd., Brookville, NY 11548
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Copyright (c) 2014 Elissa D. Giffords, Orly Calderon



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