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

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.