| Background:Systemic lupus erythematosus(SLE)is a chronic autoimmune disease characterized mainly by the appearance of autoantibodies and multiple organ involvement.It is one of the common rheumatic immune diseases in children.Drug therapy is the main treatment for childhood systemic lupus erythematosus(cSLE).Rational use of drugs can make the 10-year survival rate of sick children close to 90%.If there is no active treatment,the prognosis is poor.Although the prevalence of cSLE is lower than that of common chronic diseases in children such as diabetes and asthma,the impact of SLE on children can not be ignored.Previous studies have shown that there may be stigma in children with SLE.Teenagers are experiencing a transitional stage from immaturity to maturity.They are easily affected by external factors and are prone to all kinds of psychological and behavioral problems.Adolescent patients with SLE not only have to deal with the challenges of the growth and disease,but also face the challenges of the transitional stage.Adolescent patients with SLE bear a heavier burden and their stigma deserves more attention.However,at present,the quantitative research on the stigma of SLE patients at home and abroad is limited to adult SLE patients,so it is necessary to study the stigma of adolescent patients with SLE.In addition,previous studies have shown that there is a negative correlation between patients’ stigma level and drug compliance.Out of fear of public exclusion and discrimination,patients may form self-protection by evading treatment and other means.However,the relationship between stigma and drug compliance in adolescent patients with SLE is not clear,so it is necessary to study.Objective:To describe the status quo and related factors of stigma and drug compliance in adolescent patients with SLE,and to analyze the correlation between them.Methods:This study is a descriptive study and adopts the method of combining questionnaire survey with semi-structured interview.The questionnaire survey was conducted on 140 adolescent patients with SLE in the pediatric clinic or ward of a Grade 3A General Hospital in Beijing from October 2021 to February 2023.The data were collected by the questionnaire of general situation of adolescent patients with SLE and their parents,the Chinese version of Stigma Scale for Chronic Illness,8 item Morisky Medication Adherence Scale,Perceived Stress Scale,Coping With a Disease and Perceived Social Support Scale,and the Resilience Scale for Chinese Adolescent.Univariate analysis was used to determine the related factors of stigma and drug compliance in adolescent patients with SLE.Spearman rank correlation or Pearson correlation was used to determine the relationship between stigma and perceived stress,resilience,coping style and social support,as well as stigma and drug compliance in adolescent patients with SLE.The semistructured interview method was used to interview 11 adolescent patients with SLE in order to deeply understand the stigma experience of adolescent patients with SLE.Results:(1)The median of total stigma score,self stigma score and enacted stigma score in adolescent patients with SLE were 36.00(29.00,44.00),25.00(18.00,31.00)and 11.00(10.00,13.00)respectively.The results of univariate analysis showed that there were significant differences in the total stigma score among adolescent patients with SLE with different academic achievements,degrees of communication with parents,degrees of change in body image,expenditure modes of medical expenses and with or without changes in body image(P<0.05);there were significant differences in the self stigma score among adolescent patients with SLE with different academic achievements,degrees of communication with parents,degrees of change in body image and with or without changes in body image(P<0.05);and there was a significant difference in the enacted stigma score among adolescent patients with SLE with different degrees of change in body image(P<0.05).The results of correlation analysis showed that perceived stress and negative emotional reaction were positively correlated with the total score of stigma,self stigma and enacted stigma respectively(P<0.001);the resilience,social support and acceptance were negatively correlated with the total score of stigma,self stigma and enacted stigma respectively(P<0.001);and avoidance was positively correlated with the total score of stigma and self stigma respectively(P<0.05),while staying away was negatively correlated with the total score of stigma and self stigma respectively(P<0.05).(2)The stigma experience of adolescent patients with SLE mainly includes:being discriminated against by others(strange vision and verbal injury);Self-prejudice(having the ugly external image,becomeing a burden on the family,being inferior to peers and decreased sense of self-efficacy);Self-discrimination(covering up the changes of image,concealing the truth of illness and avoiding social interaction).(3)The median of drug compliance score in adolescent patients with SLE was 7.00(5.75,8.00)and overall in the medium level.31.4%of adolescent patients with SLE had the high adherence level.In addition,the mediun and low adherence level accounted for 38.6%and 30.0%respectively.The results of univariate analysis showed that there were significant differences in the score of drug compliance among adolescent patients with SLE with different degrees of communication with parents,degrees of know about SLE,marital status of the main caregiver and the number of online and offline clinic visits in the past 3 months(P<0.05).(4)The stigma and self stigma were negatively correlated with drug compliance(P<0.05).Further analysis showed that there was a significant negative correlation between the self stigma and drug compliance in female adolescent patients with SLE(P<0.05),and the stigma and self stigma were significantly negatively correlated with drug compliance in adolescent patients with SLE whose age was 16-18 years old(the grade was high school),school situation was going to school,family situation was non-only child family,level of communication with parents was less,level of communication with medical staff was never/rarely,illness duration was 12-48 months and dose of hormone was≤5.00 mg/d(P<0.05)Conclusion:The level of stigma in adolescent patients with SLE is relatively low,in which the level of self stigma is relatively high and the level of enacted stigma is relatively low.Adolescent patients with SLE who have poor academic performance,have little communication with their parents,feel that body image has changed greatly,have high perceived stress,have poor resilience,have less social support,and are more inclined to adopt negative ways to deal with the disease have higher stigma.The drug compliance of adolescent patients with SLE is not optimistic.Adolescent patients with SLE who have little communication with their parents and know little about SLE and whose the main caregiver is divorced/widowed have poorer drug compliance.The higher the level of stigma and self stigma in adolescent patients with SLE,the worse their drug compliance. |
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