الفهرس 
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Abstract
Systemic lupus erythematosus is a chronic autoimmune inflammatory disease with varying degree of systemic involvement. There are 5 million people with SLE worldwide, 90% of whom are women in childbearing age between 15 and 44 years (Aly et al., 2016).
Women with SLE often have disease flares, in which symptoms worsen, followed by a period of remission, in which symptoms improve. SLE is mild in some women and is life-threatening in others. However, treatment is available to reduce symptoms, reverse inflammation, and minimize organ damage. A variety of treatments can reduce symptoms, limit damage to vital organs, and reduce the risk of recurrence as glucocorticoids, such as prednisone, NSAIDs as aspocid, hydroxychloroquine and immunosuppressive agents. The choice of treatment for women with SLE is highly individualized, and is typically guided by the specific organs that are affected (Gergianaki and Bertsias, 2018).
Historically, the general recommendation was against pregnancy in women with SLE due to the unfortunate maternal and fetal outcomes. However, over the past few years, the improved treatment allowed for the better control over the disease activity during pregnancy resulting in a remarkable improvement in the quality of life and pregnancy outcomes of these women. Nevertheless, there is still a considerable risk of maternal and fetal complications. Pregnancies in women with SLE pose a great challenge due to the risk of fetal loss, IUGR, prematurity, pre-eclampsia, and low birth weight (Aly et al., 2016).
Hence, the maternity nurse working with a multidisciplinary collaborative team can play an important role to help pregnant women with SLE to enhance self-care strategy through educational activities to implement evidence-based, women-centred care guidelines to overcome uncertainties and difficulties in the management of SLE, to improve self-decision-making skills regarding their care, and to improve their quality of life and pregnancy outcomes (Wallace, 2017).
The present study aimed at evaluating the effect of self-care guidelines on the quality of life among pregnant women with systemic lupus erythematosus , to achieve the study objective. A quasi-experimental (time series), one group only, pre-post intervention study had been conducted in each of the Rheumatology Outpatient Clinic at Ain Shams University Hospital, Rheumatology Antenatal Outpatient Clinic and labor unit at Ain Shams Maternity Hospital. A purposive sample was used to recruit fifty women as the study sample.
Data collection had been carried out through the period from the beginning of May 2017 to the end of September 2018.
Subjects and methods:
Seven tools of data collection were used: the first tool was an Arabic interviewing questionnaire named “Interviewing questionnaire for pregnant women with SLE”, to assess the general characteristics of the study sample ,the previous history of SLE, obstetric/gynecological history and to assess study sample knowledge of SLE during pregnancy and its treatments. The second tool was current pregnancy assessment questionnaire for women with systemic lupus erythematosus to assess current pregnancy and labor outcomes. The third tool was quality of life (QOL) questionnaire for women with systemic lupus erythematosus to assess QOL of the study sample . The fourth tool was SLE disease activity index to assess a cumulative and weighted index for health problems associated with systemic lupus erythematosus activity. The fifth tool was health assessment questionnaire for women with SLE to assess health status of the study sample and determine their health needs. The six was a laboratory investigation card for pregnant women with SLE to assess the progress in the results of laboratory investigations done for these study sample as CBC, ESR, urine analysis, 24 hours urine, PCR.. etc,. Finally, the seven tool was assessment questionnaire of self-care practices as reported by the pregnant women with SLE to assess self-care practices of the study sample as reported. Generally the study tools were applied to the study sample three times; first pre intervention, then second and third post intervention.
A simple Arabic self-care guidelines, which were designed by the researcher were distributed to the study sample as a supportive material. The researcher provided keen education with follow-up, feedback, discussions and on-the-phone support to ensure continuous implementation of the guidelines by the study sample.
The results of present study revealed that:
As for the general characteristics: 46% of the study sample were at the age range between 30 to 39 years with mean age 28.220 (±5.437). As for their place of residence, 60% of them were lived in urban areas. The majority of the study sample (52%) had secondary education and 18% had university education, while only 6% could not read or write. 94% were married and 92% were housewives. Finally, 94% of the study sample did not have enough income.
According to previous obstetric history. About one fifth of the study sample were primigravida (18%), while the rest of them were multigravida with 46% having previous 2-3 pregnancies. The commoner mode of delivery was CS (63.7%). According to number of pregnancies in the presence of SLE, 32%, 24% and 20% of the study sample had one, two and three or more pregnancies respectively. Furthermore, 20 of the study sample (40%) had complications associated with previous pregnancy. Moreover, about one quarter had complications associated with previous labor with SLE.
Concerning the study sample’s gestational age in months at the initial visit, 54% of them were less than 3 months and 46% of them were between 4-6 months.
Regarding the conclusion of the current pregnancy and labor outcomes, about 60% of the study sample delivered at full term with 38.6% NVD and 61.4 % CS deliveries. As for maternal complications during current labor, 86.6% and 13.4% of them had PROM and bleeding during labor. Meanwhile, fetal distress was the only neonatal complication associated with current labor. Also 79.5% of delivered babies had normal birth weight while 20.5% had low birth weight.
Meanwhile, 8% of the study sample had associated maternal complication with current pregnancy. In the form of preeclampsia or GDM. As well, fetal complications occurred in 25% of them as congenital anomalies, IUGR, IUFD or intracranial hemorrhage.
As for previous history of SLE, the study found that 10% of the sample had family history of SLE and 44% had SLE for 4 years and more. The kind of SLE manifestations at SLE diagnosis: The commonest clinical manifestation of SLE reported by the study sample was Lupus Nephritis (48%) followed by Secondary Antiphospholipid Syndrome (16%). Luckily, 86% had regular follow-up of SLE. All of the study sample received all types of SLE treatment. Moreover, 82% of them had regular treatment compliance.
The results of the current study revealed that 80% of the study sample had incorrect knowledge regarding SLE in the pre intervention assessment. At the post intervention assessments, the study sample knowledge has significantly improved.
As well, there was a high statistically significant improvement on the study sample’s SLEDAI in the post intervention second and third assessments with a mean score of 26.35 (±6.01) and 21.96 (±9.00) respectively.
Many of the study sample’s follow-up laboratory investigations have significantly improved after using self-care guidelines at the second and third assessments.
Moreover, there was a statistically significant improvement on study sample’s health assessment after using self-care guidelines at the second assessment and third assessments with a mean score of 29.56 (± 6.34) and 18.24 (± 7.71) respectively.
Accordingly, there was a high statistically significant improvement on the study sample’s QOL after using self-care guidelines at second and third assessments with a mean score of 49.62 (±3.06), and 78.26 (± 8.25) respectively.
Finally, there were there were positive correlations with high statistical significance between study sample self-care practices as reported from one side and each of QOL, SLEDAI and health assessment of daily living activities from the other side, at all the pre and post intervention assessments. The correlation coefficients in the second assessment were (r= 0.43), (r= 0.315) and (r= 0.414) respectively, while in the third assessment were (r= 0.49) ,(r= 0.352) and (r= 0.501) respectively.
Conclusion: The results of the current study supported the research hypothesis that the implementation of self-care guidelines would improve the quality of life of the pregnant women with SLE, which was reflected upon improving pregnancy outcomes.
Recommendations: Based on this finding, the researcher recommended the self-care guidelines represent as one of most effective educational strategies in study sample education options for improving their quality of life and pregnancy outcomes. Also she recommended distribution of the simplified Arabic self-care guidelines on large scale in sittings caring for pregnant women with SLE.