Razi Journal of Medical Sciences

fa تجربیات زیسته مراقبین سرطان کودکی در فاز انتهایی زندگی: یک مطالعه کیفی The Lived experience of primary caregivers of childhood cancer in the end of life: A qualitative study روانشناسی بالینی Clinical Psychiatry پژوهشي Research <strong><span style="color:#0070c0;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;">زمینه و هدف:</span></span></span></strong> <span style="color:black;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;">مراقبت از کودکان مبتلا به سرطان، مسیری دشوار و منحصر بفرد است که مراقب را در معرض طیفی از تجارب مختلف قرار میدهد. هدف پژوهش حاضر واکاوی پدیدارشناسانه تجربیات زیسته مراقبین کودکان مبتلا به سرطان در مرحله یا فاز وخامت بود. </span></span></span><br> <strong><span style="color:#0070c0;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;">روش کار:</span></span></span></strong> <span style="color:black;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;">این مطالعه به روش کیفی و با استفاده از سنت پدیدارشناسی توصیفی انجامگردید. از میان تمام مراقبین اصلی کودکان و نوجوانانی که پیش از 18 سالگی تجربهی تشخیص شایعترین سرطانهای کودکی را داشتهاند و طبق نظر پزشکان معالج در فاز وخیم یا بعبارتی فاز انتهایی زندگی بیماری قرار داشتند با استفاده از روش نمونهگیری هدفمند و مبتنی بر اصل اشباع هشت نفر برای مشارکت در فرایند پژوهش انتخاب و موردِ مصاحبه قرارگرفتند. همه مصاحبهها ضبط و سپس خطبهخط دستنویسشد و در نهایت با استفاده از روشِ کلایزی (1987) تحلیل گردید.</span></span></span><br> <strong><span style="color:#0070c0;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;">یافته ها:</span></span></span></strong> <span style="color:black;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;">هشت مصاحبه نیمهساختاریافته انجام شد و تحلیلِ دادههایِ حاصل از مصاحبه منجر به شناسایی و طبقهبندیِ 11 زیر مضمون و دو مضمون اصلی (در محاصرهی ناخوشایندیهاُ در مواجهه با رخدادهایی ویژه) در زمینهی تجارب زیسته مراقبین کودکان مبتلا به سرطان در فاز وخامت شد.</span></span></span><br> <strong><span style="color:#0070c0;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;">نتیجه گیری:</span></span></span></strong> <span style="color:black;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;">مراقبین در حوزهی سرطان کودکیِ  پیشرفته با تجربه های دشوار هیجانی</span></span></span> <span style="color:black;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;"> و موقعیتهایی </span></span></span><span style="color:black;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;">منحصربفرد روبرو هستند که میتواند بر سلامت جسم و روان مراقب و روند مراقبت در پایان زندگی بیمار اثرات منفی قابل توجهی بگذارد. شناخت تجربهی زیستهی این گروه مهم از مراقبین به تیم‌های تخصصی درمان سرطان کمک خواهدکرد تا آگاهی مکفی جهت راهنمایی و پشتیبانی مراقبین داشته باشند و بطور مشارکت‌کنندهای برای شفاف‌سازی نیازهای بیماران و ارائه خدمات با کیفیت بالاتر مراقبین را همراهی کنند</span></span></span><span dir="LTR"><span style="color:black;"><span style="font-family:Times New Roman,serif;"><span style="font-size:10.0pt;">.</span></span></span></span><span style="color:black;"><span style="font-family:B Mitra;"><span style="font-size:10.0pt;"> </span></span></span> <div class="adn ads" data-legacy-message-id="176e89ff1d58ceac" data-message-id="#msg-a:r9016116270142997383" style="border-left: none; padding: 0px; display: flex; color: rgb(0, 0, 0); font-family: Roboto, RobotoDraft, Helvetica, Arial, sans-serif; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; background-color: rgb(255, 255, 255); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial;"> <div class="gs" style="margin: 0px; padding: 0px 0px 20px; width: 1096px;"> <div> <div class="ii gt" id=":nu" style="font-size: 0.875rem; direction: ltr; margin: 8px 0px 0px; padding: 0px; position: relative;"> <div class="a3s aiL " id=":nv" style="overflow: hidden; font: small / 1.5 Arial, Helvetica, sans-serif;"> <div dir="auto">Background<br> Cancer is one of the leading causes of childhood death worldwide. Cancers under the age of 18 have been epidemiologically called pediatric cancers (1). Childhood cancer is one of the most common and yet deadly diseases among children. Among childhood cancers, leukemia and central nervous system tumours are the most common and have a larger population of patients and caregivers in this category of cancers (2, 3).</div> <div dir="auto"></div> <div dir="auto">Diagnosing and treating the disease will involve the whole family in a series of stressors such as frequent medical visits, invasive procedures, severe side effects and changes in family plans, as well as economic issues (4). Parents are more likely to be challenged to balance the physical and emotional effects of a chronic illness imposed on the family, and the distress they face can put all family members at risk of severely declining quality of life (5) Or put other negative consequences incompatibility (6). Caregiving, especially for children with malignant cancers, is an overwhelming task that exposes the caregiver to a variety of different experiences and situations. The purpose of the present study was to understand the lived experience of caregivers in childhood cancer at the end of life of the patient. </div> <div dir="auto"></div> <div dir="auto">Methods<br> The research method is qualitative in terms of interpretive phenomenology. The population participating in this study included all primary caregivers of children and adolescents who had been diagnosed with childhood cancer before the age of 18 and have faced with the failure of the therapeutic process. The sampling method was purposive sampling in which 8 caregivers were selected to participate in the research and they were interviewed and analyzed. All interviews were recorded and then transcribed manually and finally analyzed using the interpretive analysis method.</div> <div dir="auto"></div> <div dir="auto">Results<br> Eight semi-structured interviews with participants in the study were conducted and the analysis of interview data led to the identification and classification of two main themes: Surrounded by unpleasant emotions and encountering special events consists of 11 sub-themes: Experience of disability, Loneliness, Anger and failure, Exhaustion, Overwhelmed with worries, In the difficulty of waiting and ambiguity, Surrender, Facing recurrence, Facing the need to make decisions, Facing the certainty of death, Interacting with a child in the shadow of death.</div> <div dir="auto"></div> <div dir="auto">Conclusion</div> <div dir="auto"></div> <div dir="auto">In the final phase of a childchr('39')s life, the caregiver will be surrounded by a series of negative and unpleasant emotions; on the one hand, they experience a heavy emotional burden, dealing with the childchr('39')s physical condition, and on the other hand, in challenging decision-making processes (20). A caregiver, or more specifically a parent/caregiver, in the final phase of a childchr('39')s life, experiences a variety of negative emotions. the caregiver will experience a strong sense of helplessness and inadequacy(26). Emotions followed by feelings of inability include extreme anger and frustration. As a caring parent, all caregivers strive to maintain hope and improve the childchr('39')s condition (27). The result of these unsuccessful efforts will be an experience of unpleasant feelings such as constant threat and encountering intense ambiguity, or in other words, uncontrollable and unpredictable stimuli that evoke a high volume of persistent anxiety (28).</div> <div dir="auto"></div> <div dir="auto">In the last days of the childchr('39')s presence in the hospital, the caregiverchr('39')s fatigue, frustration and feelings of the inability toward the existing condition make the situation extremely exhaustive for the caregiver. The burden of care will be much heavier when the patient is more likely to die. The burnout experience in caregivers can be described by the general adaptation syndrome introduced by Selye (29). Some parts of the surrender that caregivers reported, might be the result of the fatigue caused by constant anxiety.</div> <div dir="auto"></div> <div dir="auto">Caregivers pointed to the concept of loneliness in two dimensions; one is feeling lonely and the other is being alone, especially in caregiving tasks. Since the course of treatment in cancer patients will require full-time care, both caregiver and patient are deprived of normal social interactions and experience forced limitations in their relationships. Therefore, Social isolation is one of the consequences of such procedures. The other dimension is related to the deep feelings of loneliness and the lack of being understood by others. For that reason, a distinction must be made between being alone and feeling alone (31). Some researchers have described two components of loneliness, the first of which involves emotional loneliness due to a lack of intimacy or close emotional attachment, and the second is social loneliness (32). In the present study, caregivers complained about the experience of both dimensions of loneliness as well.</div> <div dir="auto"></div> <div dir="auto">Another theme that was extracted from the interviews was " encountering special events ". In this context, the sub-themes were about facing new and challenging situations that generally require using more cognitive abilities under the pressure of intensified and unpleasant emotions.</div> <div dir="auto"></div> <div dir="auto">caregivers find themselves in the middle of a variety of important and challenging decisions. One of the most difficult decisions to make is whether continuing the treatment or choosing a new type of therapy among the options; A treatment that could be the last hope before the child dies. Due to the ambiguity of the path ahead, one of the needs expressed by caregivers, in this case, is the urgent need for and informing the caregiver of all possible options and their consequences (20).</div> <div dir="auto"></div> <div dir="auto">The caregiverchr('39')s interaction with the child in the final phase is one of the most challenging ones. For the parent/caregiver in this period, communication with the dying child will activate two dimensions: The first is interacting with the child while waiting for the last day, and the second is maintaining the quality of the interaction.  </div> <div dir="auto"></div> <div dir="auto"> Another sub-theme is the experience of recurrence throughout the treatment process. The parent/caregiver reports feelings of frustration, extreme sadness, inability, and loss of control over the situation. Parents as caregivers consider their responsibility to protect their child and the difference between their desire and the existing reality will lead to feelings of severe failure and guilt (35).</div> <div dir="auto"></div> <div dir="auto">Furthermore, owing to the high ambiguity of the situation in this phase, providing sufficient and honest information and helping caregivers to make the right decision in difficult situations, is one of the essential services that health professionals should provide to the caregiver. In conclusion, understanding the lived experience of this important group of caregivers will help specialists in cancer treatment teams to have sufficient knowledge for managing and supporting caregivers and provide higher quality services.</div> <div class="yj6qo"></div><div class="adL"></div></div> </div> <div class="hi" style="border-bottom-left-radius: 1px; border-bottom-right-radius: 1px; padding: 0px; width: auto; background: rgb(242, 242, 242); margin: 0px;"></div></div> </div> <div class="ajx" style="clear: both;"></div></div> <div class="gA gt acV" style="font-size: 0.875rem; padding: 0px; width: auto; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top: none; margin: 0px; background: rgb(255, 255, 255); color: rgb(0, 0, 0); font-family: Roboto, RobotoDraft, Helvetica, Arial, sans-serif; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial;"><div class="gB xu" style="border-top: 0px; padding: 0px;"></div></div> کلیدواژه‌ها: مراقبت, سرطان کودکی, فاز انتهایی زندگی, مطالعه کیفی. Keywords: Caregiving, Childhood Cancer, End of life, Qualitative Study. 1 14 http://rjms.iums.ac.ir/browse.php?a_code=A-10-5657-1&slc_lang=fa&sid=1 Elham Fayyaz الهام فیاض fayyazelham@gmail.com 3900319475328460089650 3900319475328460089650 No دانشجوی دکتری روانشناسی، گروه روانشناسی، دانشکده علوم تربیتی و روانشناسی، دانشگاه شهید بهشتی، تهران، ایران Mohmmad Ali Mazaheri Tehrani محمدعلی مظاهری تهرانی M-mazaheri@sbu.ac.ir 3900319475328460089651 3900319475328460089651 Yes Shahid Beheshti University, Tehran, Iran استاد، گروه روانشناسی بالینی و سلامت ، دانشکده علوم تربیتی و روانشناسی، دانشگاه شهید بهشتی، تهران، ایران Leili Panaghi لیلی پناغی lpanaghi@gmail.com 3900319475328460089652 3900319475328460089652 No Shahid Beheshti University, Tehran, Iran دانشیار، گروه بهداشت خانواده، پژوهشکده خانواده، دانشگاه شهیدبهشتی، تهران، ایران Fatemeh Bagherian فاطمه باقریان fatemeh6@gmail.com 3900319475328460089653 3900319475328460089653 No Shahid Beheshti University, Tehran, Iran دانشیار، گروه روانشناسی، دانشکده علوم تربیتی و روانشناسی، دانشگاه شهید بهشتی، تهران، ایران