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Meanings of the sickening process for patients with systemic lupus erythematosus: a review of the literature Department: Graduation Program in Medical Sciences/Mental Health Area, Universidade Estadual de Campinas, Campinas, SP, Brazil.

Abstract

Systemic lupus erythematosus is an autoimmune disease that causes many psychological repercussions that have been studied through qualitative research. These are considered relevant, since they reveal the amplitude experienced by patients. Given this importance, this study aims to map the qualitative production in this theme, derived from studies of experiences of adult patients of both genders and that had used as a tool a semi-structured interview and/or field observations, and had made use of a sampling by a saturation criterion to determine the number of participants in each study. The survey was conducted in Pubmed, Lilacs, Psycinfo e Cochrane databases, searching productions in English and Portuguese idioms published between January 2005 and June 2012. The 19 revised papers that have dealt with patients in the acute phase of the disease showed themes that were categorized into eight topics that contemplated the experienced process at various stages, from the onset of the disease, extending through the knowledge of the diagnosis and the understanding of the manifestations of the disease, drug treatment and general care, evolution and prognosis. The collected papers also point to the difficulty of understanding, of the patients, on what consists the remission phase, revealing also that this is a clinical stage underexplored by psychological studies.

Keywords
Systemic lupus erythematosus; Chronic disease; Psychological adaptation; Qualitative research

Resumo

O lúpus eritematoso sistêmico é uma doença autoimune, que provoca diversas repercussões psicológicas que têm sido estudadas por meio de pesquisas qualitativas. Essas são consideradas relevantes, uma vez que reveladoras da amplitude vivenciada pelos pacientes. Face a essa relevância, este artigo buscou mapear a produção qualitativa na temática, oriunda de estudos de vivências de pacientes adultos de ambos os gêneros e que tivessem usado como instrumento a entrevista semiestruturada e/ou a observação de campo, além do critério de amostragem por saturação na definição do número de participantes de cada estudo. O levantamento foi feito nas bases de dados Pubmed, Lilacs, Psycinfo e Cochrane em busca de produções em língua inglesa e portuguesa publicadas entre janeiro de 2005 e junho de 2012. Os 19 artigos revisados que se ocuparam com pacientes em fase aguda da doença revelaram temas categorizados em oito tópicos que contemplaram o processo vivenciado nas diversas etapas, desde o desencadeamento da doença, passando pelo conhecimento do diagnóstico pela e compreensão das manifestações da doença, até o tratamento medicamentoso e os cuidados gerais, a evolução e o prognóstico. Apontam também a difícil compreensão pelos pacientes do que consiste a chamada fase de remissão, bem como nos revela que se trata de uma fase clínica pouco explorada pelos estudos psicológicos.

Palavras-chave
Lúpus eritematoso sistêmico; Doença crônica; Adaptação psicológica; Pesquisa qualitativa

Introduction

Systemic lupus erythematosus (SLE) is a disease with multisystemic, chronic and inflammatory characteristics that affects mostly young women, in a ratio of nine women to one man. Some authors attribute the onset of SLE to hormonal, genetic, environmental and emotional factors.11 Ayache DCG, Costa IP. Alterações da personalidade no lúpus eritematoso sistêmico. Rev Bras Reum. 2005;4:313-8.,22 Bonfá ED, Borba Neto EFB. Lúpus eritematoso sistêmico. In: Bonfá ED, editor. Reumatologia para o clínico. São Paulo: Roca; 2000. p. 25–33.

The scientific literature reports that often many patients end up being accompanied by various medical specialties to obtain the correct diagnosis of the disease. Therefore, visits to the doctor and the ever recurring symptoms are referred to as factors that trigger feelings of insecurity, fear, anxiety and stress.33 Sato EL, Bonfá ED, Costalatt LTL, Silva NA, Brenol JCT, Santiago MB, et al. Consenso brasileiro para o tratamento de lúpus eritematoso sistêmico. Rev Bras Reum. 2002;42:362-9. With the diagnosis, these sensations, settled or not, will be accompanied by other emotional states, now stemming from the treatment, which can accentuate this condition of personal uncertainty.33 Sato EL, Bonfá ED, Costalatt LTL, Silva NA, Brenol JCT, Santiago MB, et al. Consenso brasileiro para o tratamento de lúpus eritematoso sistêmico. Rev Bras Reum. 2002;42:362-9. And these are experiences that qualitative trials aspire to study, in an attempt to understand them dynamically,44 Turato ER. Tratado da metodologia da pesquisa clínico-qualitativa. In: Construção teórico-epistemológica, discussão comparada e aplicação na área da saúde e humanas. 2ª ed. Petrópolis: Vozes; 2003. as well as their interrelationship, to enable coping with the whole treatment process. The goal of these studies is to contribute to more assertive practices toward the SLE patient, assisting in his/her quality of care.

Given the relevance of these experiences and their little exploitation in the scientific literature by means of qualitative methodology, a bibliographic study of the subject was developed, in order to map the findings of this research model targeted to the specific exploration of the meanings attributed by patients with SLE.

Our aim is that the study will contribute to the understanding of the configuration of the emotional aspects that pervade the experience of the treatment of SLE patients already exploited in this literature, and for the indication of those still not studied, in order to facilitate increasingly the approach by health professionals.

Method

This review was based on a survey conducted in PUBMED, LILACS, PSYCINFO and COCHRANE databases, from January 2005 to June 2012. In our search strategy, we used the descriptor “Lupus” combined with “Qualitative study”. The survey resulted in 28 articles and of these, 19 met the inclusion criteria: publications in English and/or Portuguese language whose studies had prioritized the experiences of adult patients of both genders with SLE; and, with that in mind, that had used semistructured interviews and/or field observations as tools; and that also have made use of the sampling criterion by saturation to determine the number of participants.

The 19 articles were read in full and their findings were analyzed, synthesized in an integrative way and grouped into thematic categories.55 Casate JC, E Corrêa AK. Humanização do atendimento em saúde: conhecimento veiculado na literatura brasileira de enfermagem. Rev Latino-Am Enfermagem. 2005;13:105-11. The preparation of these categories was validated by investigators of the research group of the authors.

Results

With this bibliographic search, it was possible to confirm the growing interest, especially in the last seven years, for qualitative studies on the sickening process in patients with SLE. This is an editorial phenomenon, which is more frequent from 2006 onwards. Prior to this period, in addition to being scarce, qualitative studies were devoted only to describe data on disease symptoms, superposing with results from studies of quantitative nature.

The production analyzed, illustrated in Table 1, had different origins.66 Hale ED, Trehame GJ, et al. "Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study. Ann Rheum Dis. 2006;65:585-9.

7 Goodmamn D, Morrissey S, Graham D, Bossingham D. Illness representations of systemic lupus erythematosus. Qual Helth Research.. 2005;15:606-19.

8 Mattje GD, Turato ER. Life with systemic lupus erythematosus as reported in outpatient's perspective: a clinical-qualitative study in Brazil. Rev Latino-Am Enfermagem. 2006;14:475-82.

9 Stamm TA, Bauernfeind B, Coenen M, Feierl E, Mathis M, Stucki G, et al. Concepts important to person with systemic lupus erytehematosus and their coverage by standard measures of disease activity and health status. Arthritis Rheum. 2007;57:1287-95.

10 Costernbaden KH, Brome D, Blanch D, Gall V, Karlson E, Liang MH. Factors determing participation in prevention trials among systemic lupus erithematosus patients: a qualitative study. Arthritis Rheum.. 2007;57:49-55.

11 Wittmann L, Sensky T, Meder L, Michel B, Stoll T, Büchi S. Suffering and posttraumatic growth in women with systemic lupus erythematosus (SLE): a qualitative/quantitative case study. Psychosomatics. 2009;50:362-74.

12 Meldson C. Managing a medically and socially complex life: women living with lupus. Qual Health Res. 2006;16:982-97.

13 Chambers SA, Raine R, Rahman A, Isenberg D. Why do patients with systemic lupus erythematosus take or fail to take their prescribed medications? A qualitative study in a UK cohort. Rheumatology (Oxford). 2009;48:266-71.

14 Chambers S, Rine R, Rahman A, Hagley K, De Ceulaer K, Isenberg D. Factors influencing adherence to medications in a group of patients with systemic lupus erythematosus in Jamaica. Lupus. 2008;17:761-9.

15 McElbhone K, Abbott J, Gray J, Williams A, Teh LS. Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts: a qualitative study. Lupus. 2010;19:1640-7.

16 Berckerman NL. Living with lupus: a qualitative report. Soc Work Health Care. 2011;50:330-43.

17 Robinson D, Aguilar D, Schoenwetter M, Dubois R, Russak S, Ramsey-Goldman R. Impact of systemic lupus erythematosus on health, family and work: the patient perspective. Arthritis Care Res. (Roboken). 2010;62:266-73.

18 Woods-Giscombe CL. Superwoman schema: African-American women's view on stress and health. Qual Health Res. 2010;20:668-83.

19 Kumar K, Gordon C, Barry R, Shaw K, Horne R, Raza K. It's like taking poison to kill poison, but I have to get better: a qualitative study of beliefs about medicines in rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) patients of South Asian Origin. Lupus. 2011;20:837-44.

20 Waldon N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C. It's more scary not to know: a qualitative study exploring the information needs patients with systemic lupus erythematosus at the time diagnosis. Musculoskeletal Care. 2011;9:228-38.

21 Mattson M, Möller B, Stamm T, Gard G, Boström C. Uncertainty and opportunities in patients with established systemic lupus erythematosus: a qualitative study. Musculosketal Care. 2012;10:1-12.

22 Pettersson S, Möller S, Svenungsson E, Gunnarsson I, Welin Henriksson E. Women's experiences of SLE related fatigue: a focus group interview study. Rheumatology (Oxford). 2010;49:1935-42.

23 Araújo AD, Traverso-Yepez M. Expressões e sentidos do lúpus eritematoso sistêmico (LES). Est Psicol. 2007;12:119-27.
-2424 Gallop K, Nixon A, Swinburn P, Sterling KL, Naegeli AN, Silk ME. Development of a conceptual model of health-related quality of life for systemic lupus erythematosus (SLE) from the patients' perspective. Lupus. 2012;21:934-43. Nine articles showed results of studies conducted in Europe; four in Latin America; five in North America and one in Asia. However, no study on experiences of sexuality, spirituality or even on interpersonal relationships of patients with SLE, nor on the experiences of caregivers of SLE patients were found. Also, no studies targeted to the experiences of health professionals dedicated to these people were published.

Table 1
Studies reviewed.

It is worth noting that the articles did not reveal how long the SLE patients had the disease at the time of the interviews, nor provided data to clarify whether these patients were in stages of recurrence of the disease.

The studies analyzed allowed an integrative synthesis of what has been understood in relation to the different experiences of participants in the study of SLE patients, as observed in studies that have examined the experiences of these patients during the acute and active phase of the disease. These findings are those that were grouped into eight thematic categories, and which are described in this article.55 Casate JC, E Corrêa AK. Humanização do atendimento em saúde: conhecimento veiculado na literatura brasileira de enfermagem. Rev Latino-Am Enfermagem. 2005;13:105-11.

The difficulty in obtaining a diagnosis

In the 12 articles analyzed, the difficulty shown by patients in dealing with waiting until completion of the diagnosis was evident – an event hitherto regarded as a generator of anxiety and uncertainty. Thus, this situation is considered as a factor that triggers emotional problems, such as depressive reactions. Similarly, we found in these articles the idea of a reassuring effect at the time of presentation of the nosological diagnosis.66 Hale ED, Trehame GJ, et al. "Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study. Ann Rheum Dis. 2006;65:585-9.

7 Goodmamn D, Morrissey S, Graham D, Bossingham D. Illness representations of systemic lupus erythematosus. Qual Helth Research.. 2005;15:606-19.

8 Mattje GD, Turato ER. Life with systemic lupus erythematosus as reported in outpatient's perspective: a clinical-qualitative study in Brazil. Rev Latino-Am Enfermagem. 2006;14:475-82.

9 Stamm TA, Bauernfeind B, Coenen M, Feierl E, Mathis M, Stucki G, et al. Concepts important to person with systemic lupus erytehematosus and their coverage by standard measures of disease activity and health status. Arthritis Rheum. 2007;57:1287-95.

10 Costernbaden KH, Brome D, Blanch D, Gall V, Karlson E, Liang MH. Factors determing participation in prevention trials among systemic lupus erithematosus patients: a qualitative study. Arthritis Rheum.. 2007;57:49-55.

11 Wittmann L, Sensky T, Meder L, Michel B, Stoll T, Büchi S. Suffering and posttraumatic growth in women with systemic lupus erythematosus (SLE): a qualitative/quantitative case study. Psychosomatics. 2009;50:362-74.
-1212 Meldson C. Managing a medically and socially complex life: women living with lupus. Qual Health Res. 2006;16:982-97.,1717 Robinson D, Aguilar D, Schoenwetter M, Dubois R, Russak S, Ramsey-Goldman R. Impact of systemic lupus erythematosus on health, family and work: the patient perspective. Arthritis Care Res. (Roboken). 2010;62:266-73.,1919 Kumar K, Gordon C, Barry R, Shaw K, Horne R, Raza K. It's like taking poison to kill poison, but I have to get better: a qualitative study of beliefs about medicines in rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) patients of South Asian Origin. Lupus. 2011;20:837-44.,2020 Waldon N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C. It's more scary not to know: a qualitative study exploring the information needs patients with systemic lupus erythematosus at the time diagnosis. Musculoskeletal Care. 2011;9:228-38.,2222 Pettersson S, Möller S, Svenungsson E, Gunnarsson I, Welin Henriksson E. Women's experiences of SLE related fatigue: a focus group interview study. Rheumatology (Oxford). 2010;49:1935-42.,2424 Gallop K, Nixon A, Swinburn P, Sterling KL, Naegeli AN, Silk ME. Development of a conceptual model of health-related quality of life for systemic lupus erythematosus (SLE) from the patients' perspective. Lupus. 2012;21:934-43.

An understanding of the disease

The authors of six of the studies outlined how, after obtaining the diagnosis, some patients could not understand the constitution of the disease, even after receiving medical advice. This experience was understood as the result of a resistance to the diagnosis, because the act of to deny it or not to understand the chronicity of the disease resulted sometimes in not accepting the need for a longitudinal treatment. This behavior was considered as being connected with nonadherence to treatment.77 Goodmamn D, Morrissey S, Graham D, Bossingham D. Illness representations of systemic lupus erythematosus. Qual Helth Research.. 2005;15:606-19.,1111 Wittmann L, Sensky T, Meder L, Michel B, Stoll T, Büchi S. Suffering and posttraumatic growth in women with systemic lupus erythematosus (SLE): a qualitative/quantitative case study. Psychosomatics. 2009;50:362-74.,1212 Meldson C. Managing a medically and socially complex life: women living with lupus. Qual Health Res. 2006;16:982-97.,1414 Chambers S, Rine R, Rahman A, Hagley K, De Ceulaer K, Isenberg D. Factors influencing adherence to medications in a group of patients with systemic lupus erythematosus in Jamaica. Lupus. 2008;17:761-9.,1919 Kumar K, Gordon C, Barry R, Shaw K, Horne R, Raza K. It's like taking poison to kill poison, but I have to get better: a qualitative study of beliefs about medicines in rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) patients of South Asian Origin. Lupus. 2011;20:837-44.,2020 Waldon N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C. It's more scary not to know: a qualitative study exploring the information needs patients with systemic lupus erythematosus at the time diagnosis. Musculoskeletal Care. 2011;9:228-38.

An understanding of the disease by third-parties

On the other hand, six other studies revealed the difficulty of caregivers of SLE patients in understanding the disease. These difficulties were related mainly to the peculiarities of the disease, for instance, the phases of exacerbation or remission.66 Hale ED, Trehame GJ, et al. "Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study. Ann Rheum Dis. 2006;65:585-9.,88 Mattje GD, Turato ER. Life with systemic lupus erythematosus as reported in outpatient's perspective: a clinical-qualitative study in Brazil. Rev Latino-Am Enfermagem. 2006;14:475-82.,1111 Wittmann L, Sensky T, Meder L, Michel B, Stoll T, Büchi S. Suffering and posttraumatic growth in women with systemic lupus erythematosus (SLE): a qualitative/quantitative case study. Psychosomatics. 2009;50:362-74.,1212 Meldson C. Managing a medically and socially complex life: women living with lupus. Qual Health Res. 2006;16:982-97.,1414 Chambers S, Rine R, Rahman A, Hagley K, De Ceulaer K, Isenberg D. Factors influencing adherence to medications in a group of patients with systemic lupus erythematosus in Jamaica. Lupus. 2008;17:761-9.,1717 Robinson D, Aguilar D, Schoenwetter M, Dubois R, Russak S, Ramsey-Goldman R. Impact of systemic lupus erythematosus on health, family and work: the patient perspective. Arthritis Care Res. (Roboken). 2010;62:266-73.

Temporal change of the body

Authors of 12 studies indicated the body transformation experienced by some patients as something painful, both in the physical and emotional sense. The body transformation was identified as stemming from the clinical symptoms (pain, swelling, and alopecia), as well as from the treatment itself, when, for example, the use of some medications cause fluid retention.66 Hale ED, Trehame GJ, et al. "Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study. Ann Rheum Dis. 2006;65:585-9.

7 Goodmamn D, Morrissey S, Graham D, Bossingham D. Illness representations of systemic lupus erythematosus. Qual Helth Research.. 2005;15:606-19.

8 Mattje GD, Turato ER. Life with systemic lupus erythematosus as reported in outpatient's perspective: a clinical-qualitative study in Brazil. Rev Latino-Am Enfermagem. 2006;14:475-82.

9 Stamm TA, Bauernfeind B, Coenen M, Feierl E, Mathis M, Stucki G, et al. Concepts important to person with systemic lupus erytehematosus and their coverage by standard measures of disease activity and health status. Arthritis Rheum. 2007;57:1287-95.

10 Costernbaden KH, Brome D, Blanch D, Gall V, Karlson E, Liang MH. Factors determing participation in prevention trials among systemic lupus erithematosus patients: a qualitative study. Arthritis Rheum.. 2007;57:49-55.

11 Wittmann L, Sensky T, Meder L, Michel B, Stoll T, Büchi S. Suffering and posttraumatic growth in women with systemic lupus erythematosus (SLE): a qualitative/quantitative case study. Psychosomatics. 2009;50:362-74.

12 Meldson C. Managing a medically and socially complex life: women living with lupus. Qual Health Res. 2006;16:982-97.

13 Chambers SA, Raine R, Rahman A, Isenberg D. Why do patients with systemic lupus erythematosus take or fail to take their prescribed medications? A qualitative study in a UK cohort. Rheumatology (Oxford). 2009;48:266-71.
-1414 Chambers S, Rine R, Rahman A, Hagley K, De Ceulaer K, Isenberg D. Factors influencing adherence to medications in a group of patients with systemic lupus erythematosus in Jamaica. Lupus. 2008;17:761-9.,1717 Robinson D, Aguilar D, Schoenwetter M, Dubois R, Russak S, Ramsey-Goldman R. Impact of systemic lupus erythematosus on health, family and work: the patient perspective. Arthritis Care Res. (Roboken). 2010;62:266-73.,2121 Mattson M, Möller B, Stamm T, Gard G, Boström C. Uncertainty and opportunities in patients with established systemic lupus erythematosus: a qualitative study. Musculosketal Care. 2012;10:1-12.,2424 Gallop K, Nixon A, Swinburn P, Sterling KL, Naegeli AN, Silk ME. Development of a conceptual model of health-related quality of life for systemic lupus erythematosus (SLE) from the patients' perspective. Lupus. 2012;21:934-43.

The experience of fatigue

The respondents, as suggested in thirteen of the studies, described fatigue as a recurring thing, which persisted even with the disease under control. The results of these articles outlined negatively the fatigue experienced, by hindering routine activities, both current and old.66 Hale ED, Trehame GJ, et al. "Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study. Ann Rheum Dis. 2006;65:585-9.

7 Goodmamn D, Morrissey S, Graham D, Bossingham D. Illness representations of systemic lupus erythematosus. Qual Helth Research.. 2005;15:606-19.

8 Mattje GD, Turato ER. Life with systemic lupus erythematosus as reported in outpatient's perspective: a clinical-qualitative study in Brazil. Rev Latino-Am Enfermagem. 2006;14:475-82.

9 Stamm TA, Bauernfeind B, Coenen M, Feierl E, Mathis M, Stucki G, et al. Concepts important to person with systemic lupus erytehematosus and their coverage by standard measures of disease activity and health status. Arthritis Rheum. 2007;57:1287-95.

10 Costernbaden KH, Brome D, Blanch D, Gall V, Karlson E, Liang MH. Factors determing participation in prevention trials among systemic lupus erithematosus patients: a qualitative study. Arthritis Rheum.. 2007;57:49-55.

11 Wittmann L, Sensky T, Meder L, Michel B, Stoll T, Büchi S. Suffering and posttraumatic growth in women with systemic lupus erythematosus (SLE): a qualitative/quantitative case study. Psychosomatics. 2009;50:362-74.
-1212 Meldson C. Managing a medically and socially complex life: women living with lupus. Qual Health Res. 2006;16:982-97.,1515 McElbhone K, Abbott J, Gray J, Williams A, Teh LS. Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts: a qualitative study. Lupus. 2010;19:1640-7.

16 Berckerman NL. Living with lupus: a qualitative report. Soc Work Health Care. 2011;50:330-43.
-1717 Robinson D, Aguilar D, Schoenwetter M, Dubois R, Russak S, Ramsey-Goldman R. Impact of systemic lupus erythematosus on health, family and work: the patient perspective. Arthritis Care Res. (Roboken). 2010;62:266-73.,2020 Waldon N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C. It's more scary not to know: a qualitative study exploring the information needs patients with systemic lupus erythematosus at the time diagnosis. Musculoskeletal Care. 2011;9:228-38.

21 Mattson M, Möller B, Stamm T, Gard G, Boström C. Uncertainty and opportunities in patients with established systemic lupus erythematosus: a qualitative study. Musculosketal Care. 2012;10:1-12.

22 Pettersson S, Möller S, Svenungsson E, Gunnarsson I, Welin Henriksson E. Women's experiences of SLE related fatigue: a focus group interview study. Rheumatology (Oxford). 2010;49:1935-42.

23 Araújo AD, Traverso-Yepez M. Expressões e sentidos do lúpus eritematoso sistêmico (LES). Est Psicol. 2007;12:119-27.
-2424 Gallop K, Nixon A, Swinburn P, Sterling KL, Naegeli AN, Silk ME. Development of a conceptual model of health-related quality of life for systemic lupus erythematosus (SLE) from the patients' perspective. Lupus. 2012;21:934-43.

Return to daily routine

The yearning for the return of the old life routine and for the realization of future plans was another experience pointed in eight studies. In certain cases, as described by their authors, there was the expectation, on the part of the patient, that the disease would die out over time, thus allowing that these people could conclude their interrupted life projects.66 Hale ED, Trehame GJ, et al. "Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study. Ann Rheum Dis. 2006;65:585-9.

7 Goodmamn D, Morrissey S, Graham D, Bossingham D. Illness representations of systemic lupus erythematosus. Qual Helth Research.. 2005;15:606-19.
-88 Mattje GD, Turato ER. Life with systemic lupus erythematosus as reported in outpatient's perspective: a clinical-qualitative study in Brazil. Rev Latino-Am Enfermagem. 2006;14:475-82.,1010 Costernbaden KH, Brome D, Blanch D, Gall V, Karlson E, Liang MH. Factors determing participation in prevention trials among systemic lupus erithematosus patients: a qualitative study. Arthritis Rheum.. 2007;57:49-55.,1212 Meldson C. Managing a medically and socially complex life: women living with lupus. Qual Health Res. 2006;16:982-97.,2222 Pettersson S, Möller S, Svenungsson E, Gunnarsson I, Welin Henriksson E. Women's experiences of SLE related fatigue: a focus group interview study. Rheumatology (Oxford). 2010;49:1935-42.

23 Araújo AD, Traverso-Yepez M. Expressões e sentidos do lúpus eritematoso sistêmico (LES). Est Psicol. 2007;12:119-27.
-2424 Gallop K, Nixon A, Swinburn P, Sterling KL, Naegeli AN, Silk ME. Development of a conceptual model of health-related quality of life for systemic lupus erythematosus (SLE) from the patients' perspective. Lupus. 2012;21:934-43.

Indefinite use of medications

Eight studies were dedicated specifically to questions about medications. However, in the analyzed texts the experience of using the medication was described by patients as a negative event in their lives, given the continued and indefinite use or the side effects of drugs. The use of medication was quoted as meaning a condition of “being still sick”, even when the patient had no symptoms of the old acute period of the disease.66 Hale ED, Trehame GJ, et al. "Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study. Ann Rheum Dis. 2006;65:585-9.,77 Goodmamn D, Morrissey S, Graham D, Bossingham D. Illness representations of systemic lupus erythematosus. Qual Helth Research.. 2005;15:606-19.,1010 Costernbaden KH, Brome D, Blanch D, Gall V, Karlson E, Liang MH. Factors determing participation in prevention trials among systemic lupus erithematosus patients: a qualitative study. Arthritis Rheum.. 2007;57:49-55.,1212 Meldson C. Managing a medically and socially complex life: women living with lupus. Qual Health Res. 2006;16:982-97.

13 Chambers SA, Raine R, Rahman A, Isenberg D. Why do patients with systemic lupus erythematosus take or fail to take their prescribed medications? A qualitative study in a UK cohort. Rheumatology (Oxford). 2009;48:266-71.
-1414 Chambers S, Rine R, Rahman A, Hagley K, De Ceulaer K, Isenberg D. Factors influencing adherence to medications in a group of patients with systemic lupus erythematosus in Jamaica. Lupus. 2008;17:761-9.,2020 Waldon N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C. It's more scary not to know: a qualitative study exploring the information needs patients with systemic lupus erythematosus at the time diagnosis. Musculoskeletal Care. 2011;9:228-38.,2222 Pettersson S, Möller S, Svenungsson E, Gunnarsson I, Welin Henriksson E. Women's experiences of SLE related fatigue: a focus group interview study. Rheumatology (Oxford). 2010;49:1935-42.

Access to the professional support needed

The professional support was appointed by authors of five studies as another difficulty experienced by patients. Sometimes, such support was referred to as difficult to access, especially to answer questions about the disease itself. At other times, this support was referred to as deficient in understanding the uniqueness of each patient.66 Hale ED, Trehame GJ, et al. "Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study. Ann Rheum Dis. 2006;65:585-9.,77 Goodmamn D, Morrissey S, Graham D, Bossingham D. Illness representations of systemic lupus erythematosus. Qual Helth Research.. 2005;15:606-19.,1313 Chambers SA, Raine R, Rahman A, Isenberg D. Why do patients with systemic lupus erythematosus take or fail to take their prescribed medications? A qualitative study in a UK cohort. Rheumatology (Oxford). 2009;48:266-71.,2020 Waldon N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C. It's more scary not to know: a qualitative study exploring the information needs patients with systemic lupus erythematosus at the time diagnosis. Musculoskeletal Care. 2011;9:228-38.,2121 Mattson M, Möller B, Stamm T, Gard G, Boström C. Uncertainty and opportunities in patients with established systemic lupus erythematosus: a qualitative study. Musculosketal Care. 2012;10:1-12.

The reviewed studies showed the uniqueness of the different experiences of SLE patients. Together, these studies show a configuration for different experiential stages of the disease, beginning with its emergence, extending to the diagnosis and prognosis, through the understanding of the process of “being sick” and by drug treatment and their evolutionary effects on the disease. The studies also allow us to verify that patients with SLE live in the natural expectation of improvement in their symptoms; however, when remission occurs, there are difficulties in understanding the persistence of the chronic nature of the disease. This moment can be seen as a cure for some patients, whereas in truth, is actually just one stage of the disease that deserves to be better exploited (an aspect not addressed by studies) and that the amplitude of qualitative methods – as this study has shown – helps to outline, facilitating the understanding of the experiences of these patients – in fact at all stages – as well as their handling by the patient.

  • Department: Graduation Program in Medical Sciences/Mental Health Area, Universidade Estadual de Campinas, Campinas, SP, Brazil.

Acknowledgements

We appreciate the cooperation of all participants in the Laboratory of Clinical-Qualitative Research, DPMP – FCM – UNICAMP in the critical review of this article.

Referências

  • 1
    Ayache DCG, Costa IP. Alterações da personalidade no lúpus eritematoso sistêmico. Rev Bras Reum. 2005;4:313-8.
  • 2
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Publication Dates

  • Publication in this collection
    Nov-Dec 2015

History

  • Received
    12 Dec 2013
  • Accepted
    26 Aug 2014
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