Academic journal article Health and Social Work

What Social Workers in Health Care Should Know about Lupus: A Structural Equation Model

Academic journal article Health and Social Work

What Social Workers in Health Care Should Know about Lupus: A Structural Equation Model

Article excerpt

The better informed all health care providers are about systemic lupus erythematosus (SLE), the more they will be able to address the prevalence of psychosocial impact of the illness in patients living with SLE at intake and during assessment and treatment. We hypothesized that frequent flares, the patient's sense of control over the disease, education level, type of insurance, and side effects would mediate the level of psychosocial need regarding the impact of SLE.

SLE is a chronic autoimmune disease with acute periodic flares of debilitating and, m some cases life-threatening, symptoms. One typical symptom is a "butterfly" rash over the cheeks and the bridge of the nose that may resemble the markings on a wolf's face ("lupus" is Latin for wolf). For some patients, organ involvement can result in life-threatening complications (Giffords, 2003; Lupus Foundation of America [LFA], 2001; National Institute of Arthritis and Musculoskeletal and Skin Diseases [NIAMS], 1994; Seawall & Danoff-Burg, 2005). SLE is more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined (Giffords, 2003; NIAMS, 1994).

Most patients with SLE can expect to live a relatively normal life span (85 percent living more than 10 years after diagnosis) with appropriate treatment and lifestyle changes, but exacerbations (flares) can be life-threatening, and treatment side effects can be difficult to tolerate (Pullen, Brewer, & Ballard, 2009). Some of the significant complications include renal damage, retinal damage, osteoporosis, and weight gain (LFA, 2001). For the majority of patients diagnosed with the disease, there are significant functional and emotional challenges and a high degree of psychological symptoms, such as acute feelings of anxiety and depression (Adams, Dammers, Saia, Brantley, & Gaydos, 1994; Seawell & Danoff-Burg, 2004; Wallace, 2000). Women are more likely than men to have the disorder at a ratio of 9:1. Symptoms often start between the ages of 15 and 44, and the disease disproportionately affects women of color (Moses, Wiggers, Nicholas, & Cockburn, 2005).


There has been very little empirical research identifying the psychosocial experiences and needs of those living with SLE in the United States (Giffords, 2003; Mendelson, 2006). The comprehensive literature review authored by Seawell and Danoff-Burg (2004) cited seven empirical studies that investigated behavioral interventions used in SLE management, but only two quantitative studies about the psychosocial challenges and needs of patients living with SLE (Danoff-Burg & Friedberg 2009; Seawell & Danoff-Burg, 2005). Critical to the present study were the two studies that sought to identify the specific psychosocial needs of SLE patients. Danoff-Burg and Friedberg (2009) studied the unmet needs of lupus patients (N = 112). The most frequently reported unmet needs centered on physical needs (such as assistance in daily activities and transportation to medical appointments). Key findings regarding the impact of lupus included the following: tiredness as the chief complaint (94 percent), need for assistance about feeling anxious or depressed (78 percent and 71 percent, respectively), and desire for assistance "related to maintaining relationships with friends" (48 percent) (Danoff-Burg & Friedberg, 2009, p. 7). These findings are consistent with those of similar research done in Australia (McElhone, Abbott, & Teh, 2006; Philip, Lindner, & Lederman, 2009).

Moses et al. (2005) examined the specific range of psychosocial needs of SLE patients in Australia. They developed and used a Needs Assessment Questionnaire specifically for SLE patients (N = 386) from a support association in Australia to ascertain their unmet needs. Their analysis of the correlates revealed that the most prevalent unmet needs were tiredness (81 percent), pain (73 percent), not being able to do things one used to (72 percent), fear of exacerbation (72 percent), sleeping problems (70 percent), anxiety and stress (69 percent), and feeling down (68 percent). …

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