Lupus: “like a cancer but tinier”. Perceptions of systemic lupus erythematosus among adolescents nearing transition to adult care

Hernández-Zapata, Johanna; Vanegas, Sandra I. Alzate; Eraso, Ruth; Delgado, Carlos Enrique Yepes

doi:10.1016/j.rcreue.2018.06.001

Cited by 2 publications

(30 citation statements)

References 24 publications

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“…The studies were conducted across nine countries: the United States of America (11), Brazil (1), Columbia (1), China (1), Italy (1), the United Kingdom (1), Singapore (1), Australia (1), and Turkey (1). The included studies had MMAT scores ranging from four to five, with the included in the review that involved more than 1400 CYP ranging in age from eight to twenty-four years of age [36][37][38][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54]; see Table 2 for Characteristics of Included Studies. Eleven studies used a quantitative design, seven a qualitative design, and one study followed a mixed-methods approach, as represented in Table 2.…”

Section: Resultsmentioning

confidence: 99%

“…Fatigue. Eight of the nineteen studies addressed fatigue and described it as one of the most burdensome symptoms of cSLE [38,[41][42][43][44]46,52,54]. Two studies examined fa-…”

Section: Challenging Symptomsmentioning

confidence: 99%

“…Living with lupus is complicated because of the medicines and the medical appointments [44] Patients with jSLE have poorer HRQL as compared with healthy controls in both physical and psychosocial domains, with physical health being more affected [51] [ 36,38,42,44,46,48,50,51] Lack of understanding My teacher decided to tell all of them I had lupus, and they thought they could catch it. So, they wiped the seats off with cleaning wipes... trying not to catch the lupus [43] I was told I had lupus and my mother .…”

Section: Quality Of Lifementioning

confidence: 99%

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Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus—An Integrative Review

et al. 2023

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Childhood-onset systemic lupus erythematosus (cSLE) impacts the daily life of children and young people. This study aimed to describe the experiences and perspectives of children and young people living with cSLE. An integrative review guided by Whittemore and Knafl was conducted. Extant empirical research published in peer-reviewed journals from 2000 to 2021 on children’s self-reported experiences living with cSLE was identified from Scopus, CINAHL, Medline via PubMed, and PsycINFO via Ovid databases. Nineteen studies involving over 1400 participants were included. Four themes and fourteen sub-themes were identified: (1) challenging symptoms (disruptions to life and altered self, severity, fatigue, depression, and anxiety), (2) medicines and side effects (dreaded steroids, conflicting feelings, and medication adherence), (3) complicated life (school sports and social, giving things up, lack of understanding, and quality of life) and (4) ways of coping (family and friends, relationships with health providers, and maintaining positivity). While cSLE shares many similarities with adult-onset SLE, awareness of differences in experiences and perceptions of children and young people is crucial. The significant psychological and social impact of the disease and its treatments necessitates a comprehensive, holistic approach to managing cSLE that considers the unique needs of youth.

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Section: Resultsmentioning

confidence: 99%

“…Fatigue. Eight of the nineteen studies addressed fatigue and described it as one of the most burdensome symptoms of cSLE [38,[41][42][43][44]46,52,54]. Two studies examined fa-…”

Section: Challenging Symptomsmentioning

confidence: 99%

Section: Quality Of Lifementioning

confidence: 99%

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Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus—An Integrative Review

et al. 2023

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Section: Introductionmentioning

confidence: 99%

“…In developing countries, poverty, lack of infrastructure, limited social security, low level of education, and high unemployment rates are all concomitant themes in the analysis of SLE households (4,15). Little is known, however, about SLE in Latin American sociocultural contexts (17)(18)(19) Information from digital resources, such as online social networks, highlights users' communicative power. As with other social media platforms, Facebook offers a unique source of information about human behavior, with levels of ecological validity that are difficult to match in most common research settings (20).…”

Section: Introductionmentioning

confidence: 99%

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

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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.

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Lupus: “like a cancer but tinier”. Perceptions of systemic lupus erythematosus among adolescents nearing transition to adult care

Cited by 2 publications

References 24 publications

Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus—An Integrative Review

Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus—An Integrative Review

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

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