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According to the National Institutes of Health, as many as 7.5 million Americans have psoriasis, approximately 2-3% of the worldwide population. Psoriasis can be extremely debilitating, both physically and emotionally. Although common in the population, there is a lack of knowledge, and frequent misunderstanding in the general and medical communities about the disorder, which add to the stigma and emotional stress associated with it. Social support for individuals with chronic health disorders has been shown in previous research to reduce emotional disorders such as anxiety and depression, to help increase feelings of empowerment, and to improve coping skills. The author reviews the role of social support and group participation for patients with psoriasis, and describes the results of an eight-week psychotherapy group for psoriasis patients, using Yalom's model of group psychotherapy. Providers and others need to be educated about psoriasis and the available community support, in order to be able to appropriately refer patients for these services.
According to the National Institutes of Health, as many as 7.5 million Americans have psoriasis (National Psoriasis Foundation, 2010a). It is one of the most common skin diseases, affecting from 1% to 3% of the U.S. population (Camisa, 1994; Cram, 2000; Dungey & Buselmeier, 1982; Horn & Cather, 2007; Lowe, 1993; Rapp et al., 1997). This is greater than the 5.3 million people in the United States suffering from Alzheimer's disease (Alzheimer's Association, 2010). Emotionally, economically, and physically, psoriasis impacts millions more. Even so, there is a significant lack of understanding of the disease, and of the needs of individuals with psoriasis and others in their lives who are impacted by it.
Psoriasis is a common, chronic, noncontagious skin disease that, in its common form, causes red, scaly patches that can appear on any part of the body. Its scale can give lesions of psoriasis a "silvery" appearance. Psoriasis is typically unpredictable in its course, may vary in severity from one episode or flare to another, and often recurs throughout an affected person's life (Camisa, 1994; Cram, 2000; Lowe, 1993). Symptom presentation can vary significantly from one patient to another. It can cause the skin to itch, to burn, and to bleed. Cram (2000) describes how the appearance and severity range is partially dependent upon psoriasis type and manifestation. Some individuals exhibit plaque-type psoriasis with only a single patch or a few small patches whose presence may come and go, whereas others have lesions that are more widespread, potentially affecting the entire body. Drop-like guttate psoriasis presents with widespread lesions, which sometimes appear after an infection such as strep throat. Erythrodermic psoriasis involves a greater percentage of the body surface and causes generalized redness, often accompanied by scaling. With widespread involvement, erythrodermic psoriasis can cause extreme discomfort and often requires stabilization through hospitalization, because of symptoms such as hypovolemia (severe blood or fluid loss), folic acid deficiency, hypoalbuminemia (severe loss of protein), and leukocytosis (abnormal increase in white blood cells). Pustular psoriasis involves the development of crops of sterile, noninfectious pustules, and is typically localized, affecting the palms and soles (palmoplantar pustulosis). This condition can be especially uncomfortable, resulting in cracking and painful fissures. Patients with the rare, generalized form of pustular psoriasis can be critically ill, and may require hospitalization.
Up to 42% of people with psoriasis also develop psoriatic arthritis, which causes pain, stiffness, and swelling in and around the joints. Psoriasis on the hands or feet can prevent people from doing everyday tasks such as writing or walking (National Psoriasis Foundation, 2008). Comorbidities include Crohn's disease, metabolic syndrome, obesity, diabetes, hypertension, cardiac disease, and depression (Horn & Cather, 2007). People with psoriasis are afflicted by as much disability as other major diseases(Rapp et al., 1999), yet its severity is not recognized by the public (Dowling, 2003). As expressed by a patient with psoriasis: "If I am any example, once you 'grow' a psoriatic lesion it's part of you for life. It waxes and wanes, storms with redness and flakes at some times, almost disappears at others, but it's always there. You know it's always there. The only change in the lesions-other than their expected waxing and waning-is a bad one: They can get bigger" (Dewke, 1996, p. 26). Some patients with psoriasis might counter that while an individual lesion of psoriasis might not be present for life, the disease itself is, and its potential for recurrence.
"Far from being a cosmetic issue, psoriasis is a major health problem in the United States, with an annual treatment cost that may exceed $3 billion" (Cram, 2000, p. 40), with the cost continuing to rise in the ten years since that was written. The medical treatment for psoriasis can be time consuming and costly. Many do not have insurance or have limited insurance, which further compounds the difficulties in coping for individuals with psoriasis. As noted by Cram (2000), "Education is urgently needed to overcome the ignorance of medical decision-makers regarding the true nature of psoriasis, its impact on patients' lives, and the difficulties encountered in treatment" (p. 40). Author John Updike emphasized the contrast in thinking between providers and patients when he wrote about his own experience with psoriasis: "As I drag my clothes on, a shower of silver falls to the floor. He [the dermatologist] calls it, professionally, 'scale.' I call it, inwardly, filth" (Updike, 1976, p. 28). While we are hopeful that progress has been made in the relationship between the patient and the dermatology provider in the past 35 years, education is likely still needed for providers in other fields. Grossbart (2010) brings home the emotional impact and stigma of skin problems when he states that "skin disorders rarely kill people, but they have a menacing ability to chew them up and spit them out."
As apparent from the quotations above, emotional issues are very common in individuals with psoriasis. Grossbart (2010) states that "major depression is one of the main results of chronic skin disorders" and that "suicidal thoughts are another consequence." Psychologically, individuals with psoriasis have quite varied presentations, often dependent upon the degree of visibility of their lesions, the severity of their symptoms, and the potential for physical disability (Dowling, 2003).
Although psoriasis is not contagious, its red, scaly appearance often causes uninformed individuals to fear contagion. People with psoriasis state that they are "treated like lepers" by those who are unaware. Frequently reported complaints include being asked to leave a swimming pool or declined hair salon services. This can further increase feelings of isolation, depression, and anxiety in those who are in the midst of a psoriatic flare and increase the level of stress even with people in remission who are concerned about their next outbreak.
Researchers have found that emotions seem to affect the progression and severity of psoriasis (Cram, 2000; Dungey & Buselmeier, 1982; Grossbart, 2010; Kerr, 1992; Rapp et al., 1997). Rapp et al. (1997) reviewed the role of stress in psoriasis and emphasized that "very little is known about how physical, psychological, social, and environmental factors interact either to protect patients or place them at higher risk for negative impact" (p. 526). While Rapp wrote this in 1997, we have yet to achieve a thorough understanding of the role these factors play in psoriasis. In discussing social factors, the National Psoriasis Foundation states: "One of the reasons psoriasis can be so emotionally devastating is because it is visible. A person who has psoriasis will eventually have to explain the disease to someone-maybe even multiple times a day" (National Psoriasis Foundation, 2002, p.1). Therapeutic groups offer an opportunity to practice this in a safe environment.
Research further supports that it is not just the personal experience of the author that patients with a chronic condition, in her case, psoriasis, can benefit from education and social support (Sidebar 1). Joseph Pratt, an internist, used a group approach with his patients suffering from tuberculosis (Scheidlinger, 1995). Group psychotherapy for medical patients emphasizes increasing quality of life, while recognizing strengths of individual members, and helping each cope with medical challenges (Spira, 1997a). Group psychotherapy has been shown to be a viable treatment for people with medical illness; it allows members to explore and express emotional issues associated with skin symptoms and life in general (Dowling, 2003; Grossbart & Sherman, 1992). Short-term group psychotherapy is a modality of treatment often supported by HMOs and managed care for its cost-effectiveness and time efficiency. It has similar and sometimes greater effectiveness than individual therapy (Budman & Gurman, 1988; Price, Hescheles, & Price, 1999; Spira, 1997a), which gives support to its use with individuals with psoriasis (Dowling, 2003).
Dowling (2003) reviewed the literature of group participation for patients with psoriasis. A group experience gives people with psoriasis an opportunity to see they are not alone and exposes them to new coping skills. A therapeutic group experience facilitates learning and growth as members are encouraged to reflect upon and share experiences and information (Dungey & Buselmeier, 1982).
Groups using educational and experiential components found significant positive effects (Bremer Schulte, Cormane, van Dijk, & Wuite, 1985; Price, Mottahedin, & Mayo, 1991; Seng & Nee, 1997). A self-selective, open-ended psoriasis patient support group as an adjunct to psoriasis day care medical treatment was also found to be effective (Abel, Moore, & Glathe, 1990). Groups were led by a psychiatrist and often had social workers, nurses, physicians, and medical students in attendance, and emphasized the importance of social support in increasing the ability to cope in individuals with psoriasis (Abel, et al., 1990).
After reviewing studies written about the stigmatizing visibility of psoriasis, Burr and Gradwell (1996) established a small support group of six individuals facilitated by a nurse practitioner. A year later, the support group grew to 30 to 35 members, attending by choice as necessary, depending on their individual emotional needs. The National Psoriasis Foundation encourages support networks throughout the United States, and recognizes the importance of affiliation and support in overcoming the stigmatizing effects of psoriasis (http://www.psoriasis.org). (The author led one such support group before attending graduate school and saw similar benefits by attendees.)
Grossbart and Sherman (1992) summarized several studies involving patients with various dermatological conditions, and emphasized that short-term group psychotherapy provides the means for addressing emotional issues regarding their skin, as well as other life issues. This lends further support to the value of participation in short-term psychotherapy groups in the treatment of various dermatological disorders, including psoriasis.
Dowling (2003) emphasized group process facilitated through Yalom's (1995) model of group psychotherapy, and used an additional psychoeducational component meant largely for reading on personal time. The study of people with psoriasis focused on group process, emphasizing the degree of presence of Yalom's therapeutic factors within various stages of the group, presenting themes and paying particular attention to depression, anxiety, stigmatization, coping and appraisal, social support, self-esteem, and quality of life.
Several of Yalom's curative factors including the instillation of hope, universality, altruism, cohesion, interpersonal learning, and existential factors, among others, have the potential to directly impact the feelings of stigmatization, social support, and coping in the lives of patients with psoriasis. Brief existential therapy provides an opportunity to examine interpersonal and existential loss, feelings common in psoriasis and other chronic illnesses (Budman & Gurman, 1988). The literature indicates the utility of an existential therapeutic approach for individuals coping with many medical illnesses (Budman & Gurman, 1988; Spira, 1997a; Yalom & Greaves, 1977). Budman and Gurman (1988) emphasize the importance of cohesion and how effective time-limited groups can be for"time-related existential issues," which can be significant for many individuals with chronic and/or terminal illness.
Dowling (2003) found all but one of Yalom's (1995) curative factors present by the conclusion of an 8-week psychotherapy group of people with psoriasis. The one factor not present was the corrective recapitulation of the primary family group, which would likely take more time to effectively present itself. All participants reported benefits from group membership, including the personal exchange process as well as the learning of coping skills. The perceived social support was reported to be quite meaningful to them in daily adaptation to physical, emotional, and social challenges. Although the study was very small and largely qualitative, individual self-reported differences in depression and anxiety dropped and quality of life increased.
After considerable thought, preparation, and clinical supervision with doctoral chair, Dowling (2003) chose to self-disclose with significant discretion when asked by group members about her own psoriasis. Two group members had asked whether Dowling herself had psoriasis during prescreening, and the question was not addressed more than simply answering that she did in fact have the condition. Later, during the fourth group meeting, Dowling's psoriasis was presented in a way that emphasized knowledge, self-care, and social support to encourage empowerment by a role model. Dowling wished to exhibit what can be accomplished with such a stigmatizing illness, as opposed to what cannot be. In supervision, it was agreed that the brief disclosure strengthened Yalom's factors and was beneficial. Members verbally reported the instillation of hope her disclosure brought, and the focus was again on the group members.
The study's primary focus was the experiential component of group psychotherapy, and participation brought a range of experiences to awareness, allowing significant growth to all participants. Ulman (1993) states, "many medical patients enter a group to learn about their condition and are not interested in learning about their emotional functioning" (p. 465). It can be a pleasant surprise when both physical and psychological needs are met.
Noncompliance with medical treatment can be a significant problem in dermatology (Ginsburg, 1996). The daily routine of often tedious and lengthy applications of topical lotions and creams; overnight scalp treatments under a shower cap; and light treatments, often without immediate results, can be very discouraging for individuals with psoriasis. Recent advances of biologic therapy within the past decade offer additional treatment options to psoriasis patients. Systemic and biologic therapy may be a more appropriate option for those with moderate to severe psoriasis than topical treatments, and may improve compliance (National Psoriasis Foundation, 2009, Summer). Feelings of depression and hopelessness may also discourage people with psoriasis from complying with treatment regimens (Ginsburg & Link, 1989). Often, patients give up on treatment before results are apparent, and improvement is unlikely to be seen without treatment. Treatment compliance and the subsequent physical and psychological benefits must be emphasized by all practitioners, particularly as it likely affects quality of life (Dowling, 2003). This is another area in which individual or group psychotherapy can be effective and would benefit from further research.
Awareness is critical. Those who have psoriasis need to be encouraged to seek both medical and psychological care. The reassurance that they can increase their skin health and emotional health has the potential to significantly increase their quality of life, and allow them to feel less stigmatized, and more empowered. Education and support can strongly facilitate this process.
August is psoriasis awareness month (National Psoriasis Foundation, 2010b); nurses can consider taking a more active role in advocating for better and more comprehensive self-care for people with psoriasis, including making a referral to a local psychologist with experience working with patients with health concerns, for individual and/or group psychotherapy. For patients not interested in the potential benefits of group therapy, the National Psoriasis Foundation recently created a mentoring program that gives individuals an opportunity to connect one on one rather than in the setting of a support or therapy group (National Psoriasis Foundation, 2010c). Getting involved is an effective way to build confidence and self-esteem, whether it is on an individual basis or in a group context. Participating in a support network or in a mentoring program is a great way to build confidence in a safe environment. There are other ways patients can get involved, including participating in the National Psoriasis Foundation's Walk to Cure Psoriasis (National Psoriasis Foundation, 2010d), and advocating both locally and nationally to bring greater awareness to the issue and generate more funding for research. By working with others who have psoriasis, patients not only develop a network of people who understand their disease, but also get a sense of empowerment by taking ownership of the management of their condition, and feel they are playing a part in finding a cure.
In closing, although the primary focus of this article is on psoriasis, other dermatological conditions share many of the its stigmatizing effects because of their visibility and the ignorance on the part of both the general public and some healthcare providers. For example, the author has worked with AIDS patients with Kaposi sarcoma and with patients with severe acne, and has found in clinical practice that similar feelings of isolation and shame are present. The support of a network, and the involvement of both mental health and medical health practitioners, can literally save a life by preventing a spiraling of depression and possible suicidal ideation. Dermatology nurses and other healthcare professionals should consider making mental health and organizational referrals, and the therapeutic use of small support and psychotherapy groups as options for their patients with psoriasis and other stigmatizing skin diseases.
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