تأثير به‌كارگيري الگوي خود مراقبتي اورم بر كيفيت زندگي مادران داراي فرزند مبتلا به فنيل كتونوريا

THE EFFECT OF APPLYING OREM SELF-CARE MODEL ON QUALITY OF LIFE OF THE MOTHERS HAVING CHILDREN WITH PHENYLKETONURIA

پيش زمينه و هدف: فنيل كتونوريا يك بيماري متابوليك كودكان با عقب ماندگي شديد ذهني است. مادران اين كودكان نقش مراقبت و آموزش كودك را بر عهده دارند كه مي تواند بر كيفيت زندگي آن ها تأثير بگذارد. اين مطالعه باهدف تعيين تأثير به كارگيري الگوي خود مراقبتي اورم بر كيفيت زندگي مادران داراي فرزند مبتلا به فنيل كتونوريا انجام شد. مواد و روش ها: اين مطالعه نيمه تجربي است كه بر روي 31 مادر داراي فرزند مبتلا به فنيل كتونوريا مراجعه كننده به بيمارستان امين شهر اصفهان اجرا گرديد. ابزار گردآوري اطلاعات شامل، اطلاعات جمعيت شناختي، فرم نيازسنجي مبتني بر الگوي اورم و ابزار سنجش كيفيت زندگي SF 36 بود. ابتدا نمرات كيفيت زندگي پيش آزمون تعيين و پرسشنامه بررسي وضعيت سلامت تكميل گرديد. سپس نيازهاي آموزشي مشخص شد و اقدامات آموزشي حمايتي در دو جلسه دوساعته به صورت انفرادي به مدت دو ماه داده شد. يك ماه پس از آخرين جلسه، پرسشنامه كيفيت زندگي مجدداً تكميل و داده ها توسط نرم افزار SPSS16 با استفاده از آمار توصيفي و آزمون تي زوجي مورد تجزيه وتحليل قرار گرفت. يافته ها: پس از به كارگيري الگوي خودمراقبتي ميانگين كل كيفيت زندگي از 64.58 به 113.80 بعد از مداخله ارتقاء يافت كه ازلحاظ آماري(5%> P ) معني دار بود. بحث و نتيجه گيري: اجراي برنامه هاي خودمراقبتي بر اساس نيازهاي آموزشي مي تواند در ارتقاء كيفيت زندگي مادران داراي فرزند فنيل كتونوريا و ساير مادران با وضعيت مشابه مؤثر باشد؛ بنابراين ضروري است تا در مراكز مربوطه با توجه به نيازهاي مادران، اقدامات آموزشي، حمايتي براساس الگوي اورم انجام گيرد.

The effect of applying Orem selfcare model on quality of life of the mothers having children with phenylketonuria Salehi Sh [1] , Ziaei rad M [2] *, Ruzbehi Babady M [3] , Fayazi S [4] Received: 19 Sep, 2014 Accepted: 21 Nov, 2014 Abstract Background Aim: Phenylketonuria is a childrenʾs metabolic with severe mental retardation. The mothers of these children are responsible for the caring and education of their children. This can affect their quality of life. This study is carried out with the goal of determining the effect of applying Orem selfcare model on the quality of life of the mothers having children with phenylketonuria. Materials Methods: This is a quasiexperimental study that conducted on 31 mothers of children with phenylketonuria who had file in Amin hospital in Isfahan city. Data collection tools consisted of demographic information, health status form base on Orem model and the instrument of quality of life measurement SF36. Quality of life Scores were determined in a pretest and the health status forms were completed. Then educational needs were determined and essential education was given during two sessions (2 hours) within two months, individually. After one months of the last educational session, the quality of life questionnaire was completed again and the results were analyzed by SPSS16 software using descriptive statistics, paired T test, one way ANOVA and chi 2. Results: After applying Orem selfcare model, the mean of quality of life in total were improved from 64/58 before intervention to 113/80 after intervention which is statistically meaningful (P value<0/05) . Conclusion: Application of selfcare programs based on educational needs can enhance quality of life of mothers having children with Phenylketonuria and others with the same condition. Key words: Quality of life, Phenylketonuria, Self care. Address: Department of nursing, faculty of nursing and midwifery, Isfahan (khorasgan) Branch, Islamic Azad University, Isfahan, Iran. Tel: (+98)3135354058, fax:(+98)3135354065 Email : M.ziaeirad@khuisf.ac.ir [1] Associate professor, Faculty member, Department of nursing, faculty of nursing and midwifery, Isfahan (khorasgan) Branch, Islamic Azad University, Isfahan, Iran . [2] Msc nursing, phd nursing student, Faculty member, Department of nursing, faculty of nursing and midwifery, Isfahan (khorasgan) Branch, Islamic Azad University, Isfahan, Iran. (Corresponding author) [3] Msc nursing, Isfahan, Iran. [4] Msc nursing, Faculty member, Department of nursing, faculty of nursing and midwifery, Jundishapur University of Medical Sciences, Ahvaz, Iran.