Care provided by nurses to patients with juvenile systemic lupus erythematosus

Abstract

Objectives To describe the care provided by Brazilian nurses to patients with Juvenile Systemic Lupus Erythematosus (JSLE) using a self-administered questionnaire and to evaluate the possible association of demographic data and knowledge of the disease with availability of tools for diagnosis and treatment in Brazilian pediatric services. Method This is a cross-sectional observational descriptive study that analyzed the care provided by Brazilian nurses to patients with JSLE based on the answers to a self-administered questionnaire. Questions included demographics of professionals, nursing consultation, usage of tools to assess disease activity, diagnostic criteria, general care, available practices, transition program, and practices needed for better care. Results A total of 111/373 (29.4%) questionnaires were completed, most professionals were female (90.1%). Hospitalization (45.9%) and poor medication adherence (27.9%) were the most reported problems, and lack of knowledge about the institutional transition process to adult care was mentioned by half of the professionals (50.5%). Comparisons of professionals on expected care of patients regarding the type of service, hospitalized patient care, and care provided to patients with JSLE did not reveal statistically significant differences ( p > 0.05). Nurses who care for patients with JSLE are more likely to work in a public setting (14.5% vs. 36.8%, p = 0.048) and less likely to verify vaccination records (0.12.9% vs. 36.8%, p = 0.038). Nurses who worked in the inpatient setting with patients with JSLE were less likely to address pain concerns (11.7% vs. 61.6%, p < 0.0001) compared to nurses who didn’t work with JSLE patients. However, they were more likely to discuss sunscreen use (54.9% vs. 25%, p < 0.05) and be part of a multi-disciplinary team (84.3 vs. 50%, p < 0.0001). Conclusions This study demonstrates that the care provided by nurses to patients with JSLE does not consider all the resources available to assess the disease and occurs differently in the inpatient versus outpatient settings. Future research should address this gap in care. Lack of JSLE awareness was commonly reported among professionals, confirming the need for greater knowledge about JSLE, its treatment, and ways to improve adherence.

La consulta de enfermería para adolescentes: una parte importante de los cuidados prestados por los profesionales de enfermería en un estado brasileño

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Consulta de enfermagem de adolescentes: um recorte importante do cuidado prestado por enfermeiros em um Estado brasileiro

“…O cuidado integral específico à saúde do adolescente deve considerar as mudanças biológicas, psicológicas e sociais que ocorrem durante esse período de desenvolvimento. A transição para a vida adulta inclui características complexas de vida e fatores como maturação estrutural e funcional do cérebro, dúvidas sobre identidade sexual, gravidez, imagem corporal e responsabilidades de autocuidado, violência e bullying devem ser considerados durante a consulta de enfermagem (1)(2) .…”

Adolescent nursing consultation: an important excerpt from care provided by nurses in a Brazilian state

“…Comprehensive care specific to adolescent health must consider biological, psychological, and social changes that take place during this developmental period. The transition to adulthood includes complex life characteristics and factors such as structural and functional maturation of the brain, doubts about sexual identity, pregnancy, body image and self-care responsibilities, violence, and bullying must be considered during the nursing consultation 1 - 2 .…”