شنبه بیست و پنجم خرداد ۱۳۹۲ - ۷:۶ ب.ظ - دکتر لیلا (مهستی) جویباری -
ترجمه چکیده مقاله:
روش مطالعه: مصاحبه های عمیق که دست نویس شدند و از رویکرد پدیدارشناسی هرمنوتیک برای تحلیل داده ها استفاده شد. شش بزرگسال جوان 22 تا 39 ساله دارای بیماری مادرزادی قلبی در این مطالعه شرکت کردند.
از تحلیل داده ها دو مضمون استخراج شد: "داشتن بیماری" و "زندگی با بیماری"، هر دو مضمون از مضمون اصلی "دوگانگی" برگرفته شده است.
و مصاحبه شوندگان در این که چگونه خود را در نظر می گیرند، چگونه با زندگی روزمره خود مواجه می شوند و چگونه در سیستم بهداشتی با آنان برخورد می شود دچار دوگانگی بودند
آنان سعی می کردند بین متفاوت بودن و متفاوت نبودن تعادلی برقرار نمایند، بین بیمار بودن و سالم بودن، بین آشکار کردن بیماری مادرزادی قلبی خود و پنهان کردن بیماری، و زندگی با یک معلولیت پنهان. آنها همچنین می بایستی با بیماری و با سیستم مراقبت بهداشتی سازگار شوند.
AbstractAdvances in care have improved the longevity and quality of life for children with congenital heart disease; however, many of them need lifelong highly qualified specialist care. The cardiac lesion involved may not always be the patient's main problem; issues related to quality of life may dominate
To explore and gain a deeper understanding of young adults experiences of living with congenital heart disease in order to enhance the quality of care provided by the health care systemTranscribed in-depth interviews were analysed using a phenomenological-hermeneutic method. Six adults with congenital heart disease, aged 22-39 years old, were included in the study
Analyses yielded two themes, having the disease and living with illness, both originating from the main theme of ambivalence. The interviewees were ambivalent in how they viewed themselves, how they faced their daily life and how they dealt with their encounters with the health care system. They had to strike a balance between being different and not being different; being sick and being healthy; revealing their congenital heart disease or hiding it and living with a hidden handicap. They also had to cope with the disease and with the health care system
Young adults with congenital heart disease are ambivalent. They have a strong wish to be healthy and they might hide their symptoms from the healthcare personnel and sometimes even from themselves. A psychosocial preparedness when meeting these patients is necessary
نویسندگان و آدرس مقاله
Int J Cardiol. 2006 Jun 28;110(3):340-7. Epub 2005 Oct 14
Young adults experiences of living with congenital heart disease
Berghammer M, Dellborg M, Ekman I
Department of Paediatrics, The Queen Silvia Children's Hospital, Paediatric Growth and Research Centre, and Grown-Up Congenital Heart Unit, Sahlgrenska University Hospital/Ostra, Goteborg, Sweden. malin.berghammer@vgregion.se
بسم الله الرحمن الرحیم