Journal of Rafsanjan University of Medical Sciences
مجله دانشگاه علوم پزشکی رفسنجان
JRUMS
Medical Sciences
http://journal.rums.ac.ir
69
journal69
1735-3165
2008-7268
10.66224/jrums
fa
jalali
1402
2
1
gregorian
2023
5
1
22
2
online
1
fulltext
fa
بررسی عوامل مرتبط با بهزیستی روانشناختی والدین دارای فرزند مبتلا به فنیل کتونوری: یک مرور نظاممند
Investigating the Factors Related to the Psychological Well-Being of Parents with Phenylketonuria Children: A Systematic Review
روانپزشكي
Psychiatry
مقاله مروري
Review Article
<span style="font-size:10pt"><span style="line-height:99%"><span style="direction:rtl"><span style="unicode-bidi:embed"><span style="font-family:"Times New Roman","serif""><b><span lang="AR-SA" style="font-size:11.5pt"><span style="line-height:99%"><span style="font-family:"B Nazanin"">چکیده</span></span></span></b></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:105%"><span style="direction:rtl"><span style="unicode-bidi:embed"><span style="font-family:"Times New Roman","serif""><a name="_Hlk113374001"><b><span lang="FA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">زمینه و هدف: </span></span></span></b></a><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">فنیل </span></span></span><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">کتونوری (</span></span></span>Phenylketonuria; PKU<span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">) یک بیماری متابولیک ارثی است که نیاز به درمان و مدیریت مادام­العمر دارد. بیماری </span></span></span>PKU<span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin""> کیفیت زندگی بیماران و مراقبین آن­ها را تحت تأثیر قرار می­دهد و هم­چنین سازگاری و بهزیستی روان</span></span></span><i><span dir="LTR" lang="FA" style="line-height:105%">‎</span></i><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">شناختی والدین را به چالش میکشد. بنابراین، مطالعه مروری حاضر با هدف شناسایی عوامل مرتبط با بهزیستی روان</span></span></span><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">شناختی این والدین انجام شد.</span></span></span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:105%"><span style="direction:rtl"><span style="unicode-bidi:embed"><span style="font-family:"Times New Roman","serif""><b><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">مواد و روش­ها:</span></span></span></b><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin""> <a name="_Hlk118379216">این مطالعه به روش مرور نظام­مند است. جستجوی مقالات مرتبط در بازه زمانی 1380 تا 1401 در پایگاه­های داده الکترونیکی</a></span></span></span> <span lang="FA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">خارجی </span></span></span><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">از جمله </span></span></span>Scopus<span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">، </span></span></span>Science Direct<span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">، </span></span></span>PubMed<span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">، </span></span></span>Google Scholar<span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin""> و پایگاه­های داخلی </span></span></span>SID<span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin""> و </span></span></span>Magiran<span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin""> بــا استفاده از کلیــدواژه</span></span></span><i><span dir="LTR" lang="FA" style="line-height:105%">‎</span></i><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">هــای فارســی (فنیلکتونوری، والدین، بهزیستی روان</span></span></span><i><span dir="LTR" lang="FA" style="line-height:105%">‎</span></i><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">شناختی، کیفیت زندگی) و معادل</span></span></span><i><span dir="LTR" lang="FA" style="line-height:105%">‎</span></i><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">های انگلیسی آن انجام شد<a name="_Hlk118381420">. معیارهای جستجو شامل مطالعاتی با بیش از یک نمونه، مطالعاتی که از معیار رسمی عملکرد روان­شناختی مرتبط با بهزیستی این والدین استفاده کردند و مقالات کامل و منتشر شده به زبان فارسی و انگلیسی بود.</a></span></span></span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:105%"><span style="direction:rtl"><span style="unicode-bidi:embed"><span style="font-family:"Times New Roman","serif""><b><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">یافتهها:</span></span></span></b><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin""> در جستجوی اولیه 334 مقاله یافت شد که پس از حذف موارد تکراری و لحاظ کردن معیارهای ورود در نهایت 24 مقاله همراستا با اهداف مطالعه حاضر مورد بررسی قرار گرفتند. یافتهها نشان داد که متغیرهای جمعیت شناختی همچون جنسیت و سطح تحصیلات والد، سن کودک و درآمد</span></span></span><i><span dir="LTR" lang="FA" style="line-height:105%">‎</span></i><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin""> خانوار در مجموع گستردهترین عامل و حمایت اجتماعی و متغیرهای کیفیت زندگی، استرس و پریشانی روانشناختی، عوامل تکرارپذیر بعدی مرتبط با بهزیستی این والدین بودند.</span></span></span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:105%"><span style="direction:rtl"><span style="unicode-bidi:embed"><span style="font-family:"Times New Roman","serif""><b><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin"">نتیجه­گیری:</span></span></span></b><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin""> این نتایج اهمیت شبکههای اجتماعی در حمایت از خانوادهها به­ویژه مادران دارای فرزند مبتلا به </span></span></span><i>PKU</i><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:105%"><span style="font-family:"B Nazanin""> را نمایان میسازد. تحقیقات آتی باید بر استفاده از طرحهای مطالعه متنوعتر و نمونههای بزرگتر تمرکز کنند. مطالعات مداخله­ای ممکن است به بهبود بهزیستی والدین کمک کند.</span></span></span></span></span></span></span></span><br>
<b><span dir="RTL" lang="AR-SA" style="font-size:12.0pt"><span style="line-height:107%"><span style="font-family:"B Nazanin"">واژههای کلیدی: </span></span></span></b><span dir="RTL" lang="AR-SA" style="font-size:12.0pt"><span style="line-height:107%"><span style="font-family:"B Nazanin"">فنیلکتونوری، والدین، بهزیستی روان</span></span></span><span lang="AR-SA" style="font-size:12.0pt"><span style="line-height:107%"><span style="font-family:"B Nazanin"">‎شناختی، کیفیت زندگی</span></span></span>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><a name="_Hlk114425361"><b><span style="line-height:145%">Background and Objectives:</span></b></a><span style="line-height:145%"> Phenylketonuria (PKU) is an inherited metabolic disease that requires lifelong treatment and management. </span><span lang="EN" style="line-height:145%">PKU disease affects the quality of life of patients and their caregivers and also challenges the adaptation and psychological well-being of parents. Therefore, the current review study was conducted with the aim of identifying the factors related to the psychological well-being of these parents.</span><span lang="AR-SA" dir="RTL" style="line-height:145%"></span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><b><span style="line-height:145%">Materials and Methods: </span></b><span style="line-height:145%">This study is a systematic review. Searching for related articles was done in the period from 2001 to 2022 in foreign electronic databases such as Scopus, Science Direct, PubMed, Google Scholar, and SID and Magiran internal databases using the Persian keywords “phenylketonuria, parents, psychological well-being, and Quality of life”, and their English equivalents. The search criteria included studies with more than one sample, studies that used the official measure of psychological functioning related to the well-being of these parents, and full articles published in Persian and English.</span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><b><span style="line-height:145%">Results: </span></b><span style="line-height:145%">In the initial search, 334 articles were found, after removing duplicates and including inclusion criteria, finally 24 articles were examined in line with the objectives of the present study. The findings showed that the demographic variables such as parent's gender and education level, child's age, and family income</span> <span style="line-height:145%">were the most extensive factors related to the well-being of these parents. Social support and variables of quality of life, stress, and psychological distress were the next repeatable factors related to parents’ well-being.</span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><b><span style="line-height:145%">Conclusion:</span></b><span style="line-height:145%"> These results show the importance of social networks in supporting families, especially mothers with PKU children. Future research should focus on using more diverse study designs and larger samples. Interventional studies may help improve parental well-being.</span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><b><span style="line-height:145%">Key words:</span></b><span style="line-height:145%"> <a name="_Hlk131902106">Phenylketonuria, Parents,</a></span> <span style="line-height:145%">Psychological well-being, Quality of life</span><span style="line-height:145%"></span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><span dir="RTL" lang="FA" style="font-size:2.0pt"><span style="line-height:145%"></span></span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><b><span style="line-height:145%">Funding: </span></b><span style="line-height:145%">This study did not have any funds.</span><span lang="AR-SA" dir="RTL" style="line-height:145%"></span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><b><span style="line-height:145%">Conflict of interest: </span></b><span style="line-height:145%">None declared.</span><span lang="AR-SA" dir="RTL" style="line-height:145%"></span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><b><span style="line-height:145%">Ethical approval: </span></b><span style="line-height:145%">The Ethics Committee of University of Mohaghegh Ardabili approved the</span> <span style="line-height:145%">study (IR.UMA.REC.1400.013).</span></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><b><span style="font-size:1.0pt"><span style="line-height:145%"></span></span></b></span></span></span></span></span><br>
<span style="font-size:10pt"><span style="line-height:145%"><span style="tab-stops:-45.0pt"><span style="text-autospace:none"><span style="font-family:"Times New Roman","serif""><b><span style="font-size:9.0pt"><span style="line-height:145%">How to cite this article</span></span></b><span style="font-size:9.0pt"><span style="line-height:145%">: Habibi Narges, Narimani Mohammad, Aghajani Saifullah, Baher Talari Mohammad. Investigating the Factors Related to the Psychological Well-Being of Parents with Phenylketonuria Children: A Systematic Review</span></span><span lang="EN" style="font-size:9.0pt"><span style="line-height:145%">. </span></span><i><span style="font-size:9.0pt"><span style="line-height:145%">J Rafsanjan</span></span></i><span style="font-size:9.0pt"><span style="line-height:145%"> <i>Univ Med Sci</i> 2023; 22 (2): 191-210. [Farsi]</span></span> <b><span style="font-size:9.0pt"><span style="line-height:145%"></span></span></b></span></span></span></span></span><br>
فنیلکتونوری, والدین, بهزیستی روانشناختی, کیفیت زندگی
Phenylketonuria, Parents, Psychological well-being, Quality of life
191
210
http://journal.rums.ac.ir/browse.php?a_code=A-10-6231-1&slc_lang=fa&sid=1
Narges
Habibi
نرگس
حبیبی
environmental.health69@yahoo.com
6900319475328460053772
6900319475328460053772
No
University of Mohaghegh Ardabili
دانشگاه محقق اردبیلی
Mohammad
Narimani
محمد
نریمانی
narimani@uma.ac.ir
6900319475328460053773
6900319475328460053773
Yes
University of Mohaghegh Ardabili
دانشگاه محقق اردبیلی
Saifullah
Aghajani
سیف الله
آقاجانی
sf_aghajani@yahoo.com
6900319475328460053774
6900319475328460053774
No
University of Mohaghegh Ardabili
دانشگاه محقق اردبیلی
Mohammad
Baher Talari
محمد
باهر طالاری
m.baher@student.uma.ac.ir
6900319475328460053775
6900319475328460053775
No
University of Mohaghegh Ardabili
دانشگاه محقق اردبیلی