Metaphors and Representations of Systemic Lupus Erythematosus: Comment on the Article by Sutanto et al

Mazzoni, Davide; Cicognani, Elvira; Marchetti, Linda

doi:10.1002/acr.22229

Cited by 3 publications

(2 citation statements)

References 11 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Metaphors are conceptualized by Latin American and Latino participants as representations used to communicate perceptions, emotions, and symptoms that are not visible and are difficult to understand by those who do not have a disease. The butterfly as a symbol of lupus has been described concerning the cutaneous manifestations of this disease, coinciding with descriptions by health professionals (41). However, in our study we found that the symbol of the purple butterfly goes beyond the mere representation of this symptom.…”

Section: Discussionsupporting

confidence: 87%

Digital Narratives of Living With Lupus: Lived Experiences and Meanings for Latin American and Latino Patients and Their Families

Colmenares-Roa

Gastélum-Strozzi

Crosley³

et al. 2022

Arthritis Care & Research

View full text Add to dashboard Cite

Objective. Systemic lupus erythematosus (SLE) disproportionately affects Latin American and Latino populations, with worse outcomes compared to nonminority populations. Understanding patients' views is critical to provide culturally competent care. The objective of this research is to analyze lived experiences with SLE from comments made by Latin American and Latino patients, and their relatives and friends, on the public Facebook group "Hablemos de Lupus" (in English: "Let's Talk about Lupus").Methods. Deidentified narratives posted as a reaction to the most popular resources shared by the page were extracted using the Facepager application. We conducted a thematic analysis under an interpretative medical anthropology framework.Results. Five core themes were demonstrated by social media comments: lived experiences with lupus, religious/ spiritual thoughts, metaphors, heredity, and experiences of family and friends. Being diagnosed with lupus is perceived as a life-changing event. The fluctuating course of the disease causes uncertainty, and the perception of invisibility within the patient's social circle generates feelings of being misunderstood. Faith and spiritual thoughts are coping strategies. Patients use metaphors about the disease's meaning and their lived experiences (the purple butterfly, not belonging, bellicose metaphors) to communicate with others. Relatives and friends are impacted by their loved one's distress.Conclusion. Patients perceive lupus as an unpredictable illness and use metaphors to foster empathy and communicate their experiences to others. Religion is as important as medical treatment to cope with the disease, and the experience of having lupus extends to family and friends. Findings can be used to improve physician-patient communication and lupus education campaigns in the Latin American and Latino population.

show abstract

Section: Discussionsupporting

confidence: 87%

Digital Narratives of Living With Lupus: Lived Experiences and Meanings for Latin American and Latino Patients and Their Families

Colmenares-Roa

Gastélum-Strozzi

Crosley³

et al. 2022

Arthritis Care & Research

View full text Add to dashboard Cite

show abstract

“…Some specific properties of SLE should be considered. First, the advancements in the engagement process seem to be inevitably accompanied by changes in the representation of the disease that gradually become more definite and less threatening (Mazzoni, Cicognani, & Marchetti, ).…”

Section: Discussionmentioning

confidence: 99%

Living with systemic lupus erythematosus: A patient engagement perspective

Mazzoni

Cornet²,

Leeuw³

et al. 2017

Musculoskeletal Care

Self Cite

View full text Add to dashboard Cite

Patient engagement is recognized as a crucial component of high-quality healthcare services. Among rheumatic diseases, systemic lupus erythematosus (SLE) appears particularly challenging for the engagement of patients in their own care. According to the patient health engagement (PHE) model, patient engagement is a dynamic phenomenon that proceeds through four experiential positions (blackout, arousal, adhesion and eudaimonic project). The aim of the present study was to describe the engagement process from the point of view and the experiences of SLE patients. Ten in-depth interviews and four focus groups were conducted with an international sample of SLE patients from different European countries. Transcripts were analysed through thematic content analysis. Findings showed that a fully engaged patient results from reframing emotional, cognitive and behavioural dimensions. The advances along the process depends on how the patient succeeds in each position. In conclusion, PHE represents an appropriate model by which to understand the engagement process of SLE patients. In order to meet patients' needs, healthcare providers and patient support groups should consider the specific position of SLE patients, providing adequate and tailored support.

show abstract

Problematic Social Support From Patients’ Perspective: The Case of Systemic Lupus Erythematosus

Mazzoni

Cicognani

2014

Social Work in Health Care

View full text Add to dashboard Cite

Several studies demonstrated the importance of psychosocial factors, like social support, for understanding the experience of people with Systemic Lupus Erythematosus (SLE). Less information is available on "problematic support"; that is, instances of support that are perceived as non-supportive, even though the provider's actions may be well intended. Aim of this qualitative study was to explore the experiences of problematic support from SLE patients' perspective. Nine women with SLE were interviewed and transcripts were analyzed through qualitative content analysis. Three main types of problematic social support were indentified. Oppressive support describes social support offers characterized by excessive worries and unwanted advices. Support denying the illness is characterized by a neglect of the disease or of its consequences. Support based on divergent illness representations is perceived as not punctual and not in line with patients' actual clinical condition. This study confirms the complexity of providing useful support to SLE patients and suggest that also people living close to patients should represent a target of interventions.

show abstract

Metaphors and Representations of Systemic Lupus Erythematosus: Comment on the Article by Sutanto et al

Cited by 3 publications

References 11 publications

Digital Narratives of Living With Lupus: Lived Experiences and Meanings for Latin American and Latino Patients and Their Families

Digital Narratives of Living With Lupus: Lived Experiences and Meanings for Latin American and Latino Patients and Their Families

Living with systemic lupus erythematosus: A patient engagement perspective

Problematic Social Support From Patients’ Perspective: The Case of Systemic Lupus Erythematosus

Contact Info

Product

Resources

About