Living With Lupus: A Qualitative Report

Abstract

This article reports on the findings of a qualitative study based on three focus-groups of individuals (N = 32) living with Systemic Lupus Erythematosus (SLE). The themes that emerged indicated a high vulnerability for self-reported feelings of depression. The four key challenges included: (1) feeling depressed that they are not who they used to be, (2) feelings of depression and anxiety related to coping with the uncertainty of the illness, (3) physical and emotional fatigue of living with a chronic illness, and (4) coping with the financial strain of the illness. These psychosocial challenges should be considered in screening, assessment, and treatment planning for social work service with this population.

Coping and Quality of Life in Patients with Systemic Lupus Erythematosus: A Review

“…Dobkin et al, 1999;Rinaldi et al, 2006;Da Costa et al, 2000;Friedman et al, 1999;Abu-Shakra et al, 2006;Bennett, Fuertes, Keitel & Phillips, 2011;Dobkin et al, 2002;Haupt et al, 2005;Dobkin et al, 2001) who qol-Brief scales 2 (Hyphantis et al, 2011;Abu-Shakra et al, 2006) Focus groups 1 (Robbins, Allegrante, & Paget, 1993;Beckerman, 2011) Coping: The Coping Style Inventory (csi) 1 (Kozora, et al, 2005) Freiburg questionnaire on coping with illness (fkv) 1 (Haupt et al, 2005) The Coping Orientation to Problems Experienced (cope) 1 (Rinaldi et al, 2006) Lupus erythematosus needs questionnaire (slenq) 1 (Auerbach, Beckerman & Blanco, 2013) Lupuspro 1 (Jolly et al, 2014) General Health Questionnaire-30 (ghq-30) 1 (Ng & Chan, 2007) Coping skills 10 items questionnaire designed by Arthritis Foundation. 1 (Sohng, 2003) Focus groups 3 (Beckerman, 2011;Beckerman & Sarracco, 2012;Robbins, Allegrante & Paget, 1993) in different significant domains of life experience, such as social relationships, personal development and intimacy. Other interventions showed effective results focused in specific areas.…”

“…Psychosocial challenges faced by patients with sle were analyzed through focus groups with the purpose of detecting four key issues (Beckerman, 2011): 1. Feeling depressed for they are not who they used to be.…”

Women With Sle, Depressive Symptoms and Social Support

“…Outros estudos (Beckerman, 2011;Jarpa et al, 2011) também mostraram alguns fatores relacionados à depressão nesses pacientes, dentre os quais estavam as incertezas da doença, os sintomas de fadiga física e emocional e, o custo financeiro decorrente. Além disso, os pacientes referiram sentir-se deprimidos por se perceberem diferentes em comparação a como se sentiam antes da doença.…”

“…Outros estudos também mostram alguns fatores relacionados à depressão nesse grupo, entre estes estão as incertezas da doença, os sintomas de fadiga física e emocional e o custo financeiro decorrente (Beckerman, 2011;Jarpa et al, 2011) Os sintomas depressivos também podem acarretar enfraquecimento ou rompimento das redes sociais (Queiroz, 2009), o que se configura como um problema, uma vez que o apoio social é entendido como um importante recurso externo para o indivíduo num momento de susceptibilidade, agindo como um atenuante e moderador do impacto causado pelo estresse decorrente da doença (Bae, Hashimoto, Karlson, Liang & Daltroy, 2001).…”

Women Coping With Chronic Disease: The Psychosocial Impact of Lupus

“…As a disease that disproportionately affects women, there are gender-specific issues regarding sexuality, body image, and role strain (Druley, Stephens, & Coyne, 1997;Karasz & Ouellette, 1995;Seawell & Danoff-Burg, 2004). Given the chronicity, acuity, and unpredictability of this autoimmune disorder, patients often experience a high degree of psychological symptoms such as anxiety, depression, and significant decreases in health-related quality of life (Beckerman, 2011;Danoff-Burg & Friedberg, 2009;Kulczycka, Sysa-Jedrzejowska, & Robak, 2009;Trench, McCurdie, White, & D'Cruz, 2000).…”