Complex syndromes, ambivalent diagnosis, and existential uncertainty: The case of Systemic Lupus Erythematosus (SLE)

Stöckl, Andrea

doi:10.1016/j.socscimed.2007.05.016

Cited by 53 publications

(45 citation statements)

References 23 publications

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“…The clinical markers for lupus have changed over the years, reflecting the varying paradigms of any respective era. It has, for example, been classified as a dermatological condition, a disease of the immune system and, more recently, a genetic disorder (Stockl, 2007). The clinical criteria governing the diagnosis of lupus are, thus, mutable, as more is known about the condition and the ways in which responses to it are regulated and mediated.…”

Section: Discussionmentioning

confidence: 99%

“…Roles and relationships in this context are predetermined and well drawn. When the diagnosis is not certain, or when there is no diagnosis or explanation forthcoming, the patient is left to manage that uncertainty alone, sometimes taking on the role of the 'proto-professional', where they are required to actively 'participate in the process of being diagnosed and cured' (Novas and Rose, 2000;Stockl, 2007Stockl, : 1557.…”

Section: Introductionmentioning

confidence: 99%

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Diagnostic vertigo: The journey to diagnosis in systemic lupus erythematosus

Price

Walker

2013

Health (London)

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Systemic lupus erythematosus (lupus) is a complex condition characterised by wide ranging symptoms that are sometimes transient in nature. This makes recognising and diagnosing lupus particularly challenging for both patients and practitioners. The diagnostic process in this condition is a complex interplay between the boundaries of knowledge and power, control, integrity and legitimacy, which are (re)constructed and (re)negotiated between contemporary medicine, the patient and practitioner. Utilising data generated through a qualitative research design, this article illustrates some of the challenges lupus presents in the clinical encounter. We argue that the diagnosis of lupus is not a clinical event or a 'diagnostic moment'. Rather, it constitutes a journey in and of itself, one which, for many of the respondents in this study, has no diagnostically satisfying conclusion. We conclude that uncertain diagnoses, such as lupus, illustrate the extent of both embodied and clinical doubt in, what might be termed, contemporary conditions and, concomitantly, throw into sharp relief the nature of the diagnostic process. This process, in the context of lupus, and other uncertain conditions, generates, we would argue, a sense of diagnostic vertigo.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Diagnostic vertigo: The journey to diagnosis in systemic lupus erythematosus

Price

Walker

2013

Health (London)

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“…Uncertainty during these two critical phases (prediagnosis and postdiagnosis) of living with SLE contributes to the impairment of health-related quality of life (HRQOL) in patients with SLE (4,5). In comparison with other chronic diseases (such as hypertension, congestive heart failure, type 2 diabetes mellitus, myocardial infarction, and depression), HRQOL reported by patients with SLE was lower, as assessed by the Medical Outcomes Study Short Form-36 (SF-36) (6).…”

Section: Introductionmentioning

confidence: 99%

“…Not Having the Real Support That We Need”: Patients’ Experiences With Ambiguity of Systemic Lupus Erythematosus and Erosion of Social Support

Leung

Baker

et al. 2019

ACR Open Rheumatology

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Objective: The patient-specific experience of living with SLE is underreported, particularly when studying factors associated with health-related quality of life (HRQOL). Recent work has suggested that biomedical interventions are only partially predictive of HRQOL measures. A qualitative analysis of patient-specific experiences can uncover additional root causes of impaired HRQOL in SLE populations beyond the scope of quantitative questionnaires. Methods: Consented adult patients with American College of Rheumatology- or Systemic Lupus International Collaborating Clinics-classified SLE were recruited. Ten semi-structured interviews were conducted across six participants. Interviews were audio recorded, transcribed, and analyzed using an iterative process. Findings were presented to an interactive public forum with SLE patients family members and friends of patients, and health care professionals to assess accuracy. Results: Four themes emerged from the interviews: 1) ambiguity, inconsistency, and lack of symptom predictability due to SLE disease courses, 2) poor communication with family/friends/partners, and poor bi-directional communication between health care providers and patients (informational support), 3) lack of validation for patients’ experiences (appraisal support), and 4) problematic aspects of social support including negative support and patients’ inability to reciprocate support due to role changes. Data also indicate a reciprocal association between appraisal and informational sources of support. Conclusion: Findings indicate that inadequate appraisal and informational support from informal and formal sources are salient factors influencing HRQOL among SLE patients. Findings also point to the necessity of integrating community organizations, physicians, and friends and family of SLE patients into capacity building interventions aimed at enhancing these sources of social support.

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“…In this paper, we explore the nature of how basic existential conditions are experienced in daily life with systemic lupus erythematosus (SLE), a chronic autoimmune rheumatic disease with physical, psychosocial and existential constraints (Hale, Treharne, Lyons, et al., ; Stockl, ; Sutanto et al., ). This is the second work originating from a comprehensive study, with data material collected over 1½ years, exploring the lived experience of changes in basic existential conditions over the course of a life time with SLE.…”

Section: Introductionmentioning

confidence: 99%