The structure of the “lived-experience”: analysis of reports from women with systemic lupus erythematosus

Barros, Bruna Paes de; Souza, Camila Bernardes de; Kirsztajn, Gianna Mastroianni

doi:10.5430/jnep.v2n3p120

Cited by 3 publications

(3 citation statements)

References 18 publications

(18 reference statements)

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“…SLE is a source of disability that can create a burden of poor quality of life 6, 7, 8, 9, 10. The quality of life of SLE patients is always worse than that of healthy people and remains poor even in patients with SLE without complications and organ damage 6, 11.…”

Section: Introductionmentioning

confidence: 99%

“…The quality of life of SLE patients is always worse than that of healthy people and remains poor even in patients with SLE without complications and organ damage 6, 11. The low quality of life of people with SLE seems to limit daily life activities, especially due to joint pain resulting from SLE relapses, depression and withdrawal from the environment, changes in interpersonal relationships, discrimination, difficulties in finding employment, obstacles to performing social roles, and a high risk of infertility 10, 12, 13, 14, 15, 16, 17, 18. Low quality of life because of SLE flares cannot be predicted due to the increased intensity of exposure factors 1, 19.…”

Section: Introductionmentioning

confidence: 99%

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Self-care model application to improve self-care agency, self-care activities, and quality of life in patients with systemic lupus erythematosus

Kusnanto

Sari

Harmayetty

et al. 2018

Journal of Taibah University Medical Sciences

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Objectives This study aimed to examine the effect of the application of a self-care model to improve self-care agency (SCA), self-care operation, and quality of life (QoL) in patients with systemic lupus erythematosus (SLE). Methods This study employed a pre-experimental design with one pretest-posttest group. Thirty-six respondents were selected through total sampling. The experimental group was provided self-care management training, followed by four weekly home visits. Self-care agency was measured with the self-care agency scale, the other variables through self-rated abilities on the health practices scale and Lupus quality inventory. Data were analysed using paired t -tests with α < 0.05. Results SLE was common in actively working married women of childbearing age, most of whom had had SLE for 1–2 years (33.3%), with arthritis being the most common symptom (reported by 61.1%). The major flare trigger factor was physical stress (66.7%), resulting in fatigue. On average, the self-care model was able to improve SCA by 19.93%, self-care operation by 17.53%, and QoL by 12.19%. It was significantly effective in enhancing SCA, self-care operation, and QoL in patients with SLE ( p < 0.001). Conclusions The application of Orem's self-care model is effective in improving SCA, self-care, and QoL, and this study provides evidence of the benefits of its use in the nursing care of patients with SLE in a community setting. Health care providers should incorporate Orem's self-care model in nursing care to enhance SCA, self-care, and QoL in patients with SLE.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Self-care model application to improve self-care agency, self-care activities, and quality of life in patients with systemic lupus erythematosus

Kusnanto

Sari

Harmayetty

et al. 2018

Journal of Taibah University Medical Sciences

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“…Consistent with our findings, 2 studies of rheumatic disease, including lupus, demonstrated that religiosity is an important active coping strategy for Latinos (36,37). Research focused on lupus patients’ attachment to spirituality/religiosity to face their illness is scarce (38,39). Additional studies have explored the concept of religion in disease beyond its role as a coping mechanism, for how the illness itself is conceived and experienced.…”

Section: Discussionmentioning

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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Implementation artificial neural network nguyen widrow algorithm for lupus prediction

Aisyah

Harahap

Dharma

et al. 2019

J. Phys.: Conf. Ser.

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Lupus is a type of skin disease known as 1000 face disease. This term arises due to this chronic disease causing symptoms and signs that are almost similar to other diseases. Artificial neural network is one method that can be used to help the medical world in managing clinical data. Nguyen Widrow is one of the algorithms and artifical neural network that can be used to make predictions and improve the iteration process. this study applying Nguyen Widrow algorithm in predicting lupus by Matlab. Based on the results of the training process, the Nguyen Widrow initialization algorithm is able to recognize patterns of 80% or range 16 of the 20 datasets. As for the results of testing Nguyen Widrow initialization algorithm with the initials activation function hidden = logsig, activating output logsig, target error 0.1 and learning rate 0.1, Epoch 10000 able to recognize 100% of patterns from 10 existing datasets. So from that it can be concluded that the Nguyen Widrow initialization algorithm can be used to predict disease patterns.

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The structure of the “lived-experience”: analysis of reports from women with systemic lupus erythematosus

Abstract: Objective: To investigate how systemic lupus erythematosus (SLE) has changed the lives of affected women and their reports on how this condition has affected them. Method:Interviews were performed in accordance with the qualitative study method of Amatuzzi and the answers were recorded.

Cited by 3 publications

References 18 publications

Self-care model application to improve self-care agency, self-care activities, and quality of life in patients with systemic lupus erythematosus

Self-care model application to improve self-care agency, self-care activities, and quality of life in patients with systemic lupus erythematosus

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

Implementation artificial neural network nguyen widrow algorithm for lupus prediction

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