جستجوی مقالات مرتبط با کلیدواژه

palliative care

در نشریات گروه پزشکی
  • امید ترابی، زهرا طاهری خرامه*
    پیش زمینه

    رنج معنوی پدیده ای رایج و دردناک در میان بیماران مبتلا به بیماری های نادر و درمان ناپذیر است، به طوری که شواهد نشان می دهد تا 44٪ از افراد مبتلا به سرطان پیشرفته را تحت تاثیر قرار می دهد. جلوه های این رنج شامل ناامیدی، ناتوانی و درد معنوی است—نوعی رنج غیرجسمانی که به طور قابل توجهی بر سلامت جسمی و روانی تاثیر می گذارد. با وجود شیوع بالا و پیامدهای جدی آن، مراقبت معنوی همچنان در عمل بالینی کمتر مورد توجه قرار می گیرد. هدف از این مرور دامنه ای، ترسیم ادبیات موجود درباره نیازهای معنوی بیماران مبتلا به بیماری های غیرقابل درمان، شناسایی حوزه های کلیدی رنج معنوی، و بررسی عوامل و پیامدهای مرتبط با آن است.

    روش ها

    این مرور دامنه ای یافته های تجربی حاصل از مطالعات داوری شده متعددی را که به بررسی نیازهای معنوی در جمعیت های مبتلا به بیماری های محدودکننده زندگی پرداخته اند، تلفیق کرده است. مقالات بر اساس ارتباط آن ها با رنج معنوی، نیازهای مراقبتی و زمینه های مراقبت تسکینی انتخاب شدند، با تاکید ویژه بر تفاوت های فرهنگی و ویژگی های خاص هر بیماری.

    یافته ها

    نیازهای معنوی در این جمعیت متنوع اند و شامل چهار بعد اصلی هستند: ارتباط، آرامش، معنا/هدف، و تعالی. نیازهای خاصی که به طور مکرر شناسایی شده اند عبارتند از: آمادگی برای مرگ، یافتن معنا در زندگی، حمایت عاطفی، حفظ استقلال، و دستیابی به آرامش درونی. عواملی مانند زمینه فرهنگی، سبک مقابله دینی، پویایی های خانوادگی، و مسیر پیشرفت بیماری بر نحوه بروز و شدت این نیازها تاثیر می گذارند. عدم پاسخگویی به این نیازها با کاهش کیفیت زندگی، افزایش استفاده از خدمات درمانی، و درخواست برای مرگ با کمک پزشک همراه است. در مقابل، سلامت معنوی مزایای محافظتی مانند بهبود کیفیت زندگی، افزایش امید، حفظ کرامت، و کاهش ناامیدی در پایان زندگی به همراه دارد. با این حال، تنها 6٪ تا 28٪ از بیماران گزارش می دهند که از سوی متخصصان مراقبت سلامت، مراقبت معنوی دریافت کرده اند.

    نتیجه گیری

    نیازهای معنوی بخشی جدایی ناپذیر از تجربه زیسته بیماران مبتلا به بیماری های نادر و غیرقابل درمان هستند. این نیازها پیچیده، عمیقا شخصی، و متاثر از زمینه های فرهنگی و وجودی اند. غفلت از آن ها به افزایش رنج و پیامدهای نامطلوب سلامت منجر می شود. الگوهای مراقبت کل نگر باید ارزیابی معنوی را در اولویت قرار داده و مداخلات هدفمند را برای حمایت از رفاه، کرامت و آرامش در پایان زندگی، در نظام مراقبت ادغام کنند.

    کلید واژگان: رنج معنوی، بیماری لاعلاج، مراقبت تسکینی، پایان زندگی، مراقبت معنوی، بیماری های نادر
    Omid Torabi, Zahra Taheri Kharameh*
    Background

    Spiritual distress is a prevalent and distressing phenomenon among patients with rare and incurable diseases, with evidence showing it affects up to 44% of individuals with advanced cancer. Manifestations include despair, helplessness, and spiritual pain—non-physical suffering that significantly impacts physical and emotional well-being. Despite its high prevalence and serious consequences, spiritual care remains under-addressed in clinical practice. To map the existing literature on the spiritual care needs of patients with incurable diseases, identify key domains of spiritual distress, and explore associated influencing factors and outcomes.

    Methods

    This scoping review synthesized empirical findings from a range of peer-reviewed studies exploring spiritual needs in populations with life-limiting illnesses. Articles were selected based on relevance to spiritual distress, care needs, and palliative settings, with particular attention to cross-cultural and disease-specific variations.

    Results

    Spiritual needs in this population are diverse, encompassing four primary dimensions: connection, peace, meaning/purpose, and transcendence. Specific needs frequently identified include preparation for death, existential meaning-making, emotional support, maintaining autonomy, and achieving inner peace. Factors such as cultural background, religious coping, family dynamics, and disease trajectory shape the expression and intensity of these needs. Failure to address them correlates with reduced quality of life, higher healthcare utilization, and requests for physician-assisted death. Conversely, spiritual well-being offers protective benefits including enhanced quality of life, hope, dignity, and reduced end-of-life despair. Despite this, only 6% to 28% of patients report receiving spiritual care from healthcare professionals.

    Conclusion

    Spiritual care needs are integral to the lived experience of patients with rare and incurable diseases. These needs are complex, deeply personal, and shaped by cultural and existential contexts. Their neglect contributes to suffering and poor healthcare outcomes. Holistic care models must prioritize spiritual assessment and integrate targeted interventions to support well-being, dignity, and peace at the end of life.

    Keywords: Spiritual Distress, Terminal Illness, Palliative Care, End-Of-Life, Spiritual Care, Rare Diseases
  • Mirhossein Ahmadi, Reza Abdollahi *

    Palliative care seeks to enhance the quality of life for patients with life-limiting illnesses and their families, transcending geographical, cultural, and socioeconomic boundaries

    Keywords: Palliative Care, Borders, Race, Patient Autonomy
  • Hossein Jabbari Beyrami, Azita Fathnezhad-Kazemi, Shalaleh Aghaei*
    Background & Objective

     The aging population and the rising prevalence of chronic diseases have made palliative care a necessity for improving individuals’ quality of life. Many healthcare professionals do not possess sufficient training and knowledge in this regard. The objective of this study was to assess the attitudes and knowledge of internal medicine residents regarding palliative care.

    Materials & Methods

    A cross-sectional study was performed to assess the knowledge and attitudes of internal medicine residents (N=91) at Tabriz University of Medical Sciences. A validated, structured online questionnaire was used to assess demographic characteristics, palliative care knowledge (30 items), and attitudes (37 items) across four domains. The data analysis was conducted using SPSS version 24, employing both descriptive and inferential statistical methods, including t-tests, ANOVA, and multiple linear regression.

    Results

    The mean knowledge score was 19.66 ± 2.93, and the mean attitude score was 139.47 ± 11.44). Prior training (p = 0.041) and male gender (p = 0.009) showed a significant correlation with higher attitude scores. Knowledge scores had a positive correlation with year of residency (p = 0.033) and a negative correlation with age (p = 0.004). Despite limited knowledge, 67% of participants stated that they needed training on palliative care.

    Conclusion

    Despite favorable attitudes toward palliative care, the lack of knowledge, particularly in conceptual and psychological domains, should be addressed. The findings highlight the necessity of palliative care training in internal medicine residency programs.

    Keywords: Attitude, Internal Medicine, Knowledge, Medical Education, Palliative Care
  • Seyed Ali Taheri Hatkehlouei, Niloofar Nezhadahmad, Zahra Sheibani, Fatemeh Rostami, Stephanie Sandanasamy, Nilufer Yildirim, Philip Mcfarlane, Badri Jaafari *

    This systematic review aimed to evaluate nursing students’ palliative care knowledge and to explore factors that may influence it. A comprehensive literature search was conducted from database inception to March 1, 2023, using Medical Subject Headings and related terms (e.g., “knowledge”, “palliative care”, and “nursing students”) across major international databases (Scopus, PubMed, and Web of Science) as well as Iranian sources, including IranMedex and the Scientific Information Database. The methodological quality of eligible cross-sectional studies was appraised with the Assessment Instrument for Cross-Sectional Studies (AXIS). Overall, eleven cross-sectional studies were included, comprising a total sample of 4,320 nursing students. The average nursing student's knowledge of palliative care was 8.94 (standard deviation [SD]=3.57) out of 20; these results indicate an insufficient level of knowledge. Factors such as age, female gender, encounters with terminally ill patients, participation in non-university educational sessions, maturity, and participation in university educational sessions may be positively associated with nursing students’ palliative care knowledge. Furthermore, the investigation revealed that the following variables had a statistically significant association with nursing students' level of knowledge in palliative care: academic year, perception of death as the cessation of life, receipt of university educational sessions, teaching content related to palliative care, type of university, academic grade, gender, place of birth, monthly family income, religious beliefs, and experience of providing care to a dying family member. Thus, future studies should focus on implementing effective interventions to enhance nursing students’ palliative care knowledge.

    Keywords: Knowledge, Nursing Students, Nursing, Palliative Care
  • Poornachandra Tejaswi Siddappa *, Shamsundar Sunkappa, Jagannath Kunigal Puttaswamy, Nanda Ramanand, Aradhana Katke, Thejaswini Boraiah
    Background
    Improvement in quality of life and palliation of symptoms forms the primary end point in patients unfit for definitive treatment modalities. Quad-shot like radiotherapy aims to achieve these objectives with addition of chemotherapy in advanced head and neck malignancy.
    Method
    In this study, patients >18 years of age, with advanced head and neck malignancy (stage IVA&B) in non-nasopharyngeal sub-site, not fit for radical treatment were included in this mono-centric, prospective, interventional study. Quad-shot like regimen of 14.4Gray in 4fractions delivered with concurrent carboplatin (AUC2) on day-1 of radiation cycle and reviewed after 3-weeks. Based on palliative response, total two repetition are done. Quality of life analysis was done with European Organization for Research and Treatment– Head & Neck-35 questionnaire Treatment induced toxicity evaluated with common terminology criteria for adverse event version 5.0 and radiation therapy oncology group toxicity grading. Treatment outcome was assessed with response evaluation criteria in solid tumors1.1. Microsoft-excel, SPSS version-22 used to analyze data. Kaplan-Meier survival curves were used for overall survival, P-value<0.05 with Pearson chi-square test and ANOVA was considered as statistically significant.
    Results
    The palliation of symptoms and improvement in quality of life were recorded in 80% and sustained up to 3 months, with median overall survival of 8±0.411 months, maximum benefit appreciable with larynx compared to other sub-sites. However, grade-4 toxicity reported with one patient in post phase-1 and two patients in post phase-2 and managed with best supportive care.
    Conclusion
    Quad-shot like radiotherapy with concurrent chemotherapy for advanced head and cancer found to be beneficial in patients unfit for radical treatment resulting in desirable palliative outcome.
    Keywords: Radiation Dose Hypofractionation, Carboplatin, Palliative Care, Quality Of Life, Squamous Cell Carcinoma Of Head, Neck
  • Fatemeh Qasempoor Tonekaboni, Hamidreza Qazizadeh, Kimia Taslimi, Pegah Matourypour*
    Background

    The growing elderly population and prevalence of chronic diseases have elevated palliative care as a global public health concern. The knowledge and attitudes of undergraduate nursing students regarding palliative care will impact the quality of care in the future.

    Aim

    This study was conducted with aim to evaluate the knowledge and attitudes of nursing students towards palliative care among at Tehran University of Medical Sciences .

    Method

    This cross-sectional descriptive study was conducted in 204 on nursing  students in their 5th to 8th academic semesters at Tehran University of Medical Sciences in 2022. Data was collected using the Palliative Care Quiz for Nursing (PCQN) and a researcher-developed attitude questionnaire through an online survey. Statistical analysis was conducted using SPSS software (version 16.0). p<0.05 was considered statistically significant.

    Results

    The analysis of the attitude questionnaire showed that 87.3% of participants had a positive attitude towards palliative care. Gender was a significant factor in attitude, with women scoring higher (p=0.0001). The mean PCQN score was 10.26 ± 2.33, indicating limited knowledge. There was no significant correlation between knowledge and attitude scores.

    Implications for Practice

     Most undergraduate nursing students had inadequate knowledge about palliative care, but they generally held positive attitudes towards it. Therefore, it is crucial to develop an effective palliative care program for nursing students by implementing a unified curriculum.

    Keywords: Attitude, Education, Knowledge, Nursing Students, Palliative Care
  • Yuwadee Wittayapun, Ueamporn Summart *, Orathai Pongkaew, Suchittra Saengkhum, Yasuko Inaba
    Introduction

    Caring for palliative care (PC) patients can impose a high level of burden on family caregivers (FCs). However, little is known about predictors of burden among this population. This study aims to determine the prevalence and factors predicting a high level of FCs burden in those who care for PC patients.

    Methods

    This cross-sectional study recruited FCs of individuals with advanced or terminal illness from the PC settings of two health service networks in the south of Thailand. The data were collected using self-administered questionnaires. The prevalence of burden was estimated. Binary logistic regression was employed to identify factors predicting FC burden, and the area under the ROC curve was used to assess model discrimination.

    Results

    Of 305 FCs met the eligibility criteria, and 42.3% (95% CI: 36.4-47.7) of them reported experiencing a high level of burden. Factors significantly predicting high burden were severe anxiety (OR=2.19; 95% CI: 1.19-4.01), severe depression (OR=2.17; 95% CI 1.10-4.27), FCs with illness (OR=2.13; 95% CI: 1.23-3.70), decreased quality of life (QOL) by 1 point (OR=1.04; 95% CI: 1.02-1.06), respectively. Likewise, the final model was statistically significant (area under ROC curve=0.79; 95% CI: 0.63-0.74, P<0.001), indicating that this model could differentiate between FCs who reported a high burden and those who did not.

    Conclusion

    The burden is high among FCs of palliative care patients. Mental illness affected both functional capacity and QOL and raised FC burden. Preventing and treating such disorders are crucial. Therefore, further studies should investigate strategies for alleviating FC burden in this population.

    Keywords: Caregivers Burden, Caregivers, Palliative Care, Predictors
  • Zahra Arabi, Arvin Mirshahi, Hosein Kazemi Zadeh, Shima Haghani, Anand Iyer, Rachel Wells, Marie Bakitas, Mehraban Shahmari, Arpi Manookian*
    Background

    Chronic obstructive pulmonary disease (COPD) is a progressive, irreversible respiratory condition that imposes a significant physical and psychological burden, often leading to a poor quality of life. Although palliative care can help address these challenges, in Iran it is typically limited to cancer patients and is not commonly provided to those with COPD. Globally, the early integration of palliative care for chronic illnesses is expanding. The present study aims to investigate the feasibility and acceptability of an early tele-palliative care intervention for patients with COPD in Iran and to explore its potential effects on quality of life, anxiety, depression, and emergency department readmissions.

    Methods

    This randomized controlled feasibility trial protocol involves a 3-month early tele-palliative care program delivered by two nurse coaches, targeting patients with COPD. Participantswere randomly assigned to either the intervention group (n = 26) or the control group (n = 26) using permuted block randomization. Both groups received traditional COPD care; however, the intervention group also received six weekly telephone sessions and six weeks of follow-up support via phone call and WhatsApp Messenger. The primary objective was to assess the feasibility and acceptability of early tele-palliative care, measured through recruitment and attrition rates, questionnaire completion rates, patient satisfaction, attitudes toward the intervention, and adherence to the intervention. The secondary outcome included changes in quality of life, anxiety, depression, and hospital readmissions. These were measured using validated instruments at two time points: Baseline (pre-intervention) and three months post-intervention. Statistical analyses were performed using SPSS version 22, including the independent samples t-test, paired samples t-test, chi-square test, and Fisher’s exact test. Analysis of covariance (ANCOVA) was used to compare the mean outcomes between the two groups while statistically controlling for the effect of baseline values. Statistical significance was set at p < 0.05.

    Conclusion

    This study protocol aimed to determine the feasibility and acceptability of an early tele-palliative care intervention for patients with COPD in Iran. The findings provided essential data to inform the design of a future large-scale clinical trial and support the potential integration of early telehealth palliative care into standard COPD management in the country.

    Keywords: Pulmonary Disease, Chronic Obstructive, Telehealth, Palliative Care, Quality Of Life, Feasibility Studies
  • Yun Tao, Jie Tang, Wenhui Yu, Wenge Yang, Meng Zhang, Qinghua Wu, Jie Li*
    Background

    Obstructive jaundice commonly complicates pancreatic cancer and often requires biliary decompression. Percutaneous transhepatic biliary drainage (PTBD) followed by stent placement is used for palliation, but long-term stent patency and the relationship between patency and overall survival (OS) remain incompletely characterized.

    Methods

    We conducted a retrospective cohort study of 60 consecutive patients who underwent sequential PTBD and biliary stent placement at the Affiliated Hospital of Jiangnan University (Wuxi, China) between January 2020 and December 2024. Primary endpoint was stent patency (time from stent insertion to radiologically confirmed occlusion or repeat intervention). Secondary endpoint was OS measured from stent insertion. Patient characteristics, stent type (covered vs uncovered), tumor location, stage, and receipt of systemic chemotherapy were extracted from electronic medical records. Kaplan–Meier analysis and Cox proportional hazards models (adjusted for age, sex, cancer stage, tumor location, baseline bilirubin and chemotherapy) were used. Proportional hazards assumption was tested using Schoenfeld residuals.

    Results

    Median stent patency was 12.0 months (IQR 8.0–15.0) and median OS was 9.5 months (IQR 6.0–13.0). Covered stents were associated with longer patency (median 13.0 vs 11.0 months; log-rank P=0.018). In multivariable Cox regression, Stage IV disease (adjusted HR 2.50; 95% CI 1.68–3.86; P<0.001) and age (per year, adjusted HR 1.05; 95% CI 1.02–1.09; P=0.002) were independent predictors of mortality; covered stent use was associated with lower mortality (adjusted HR 0.78; 95% CI 0.61–0.99; P=0.043). Schoenfeld tests showed no violation of the proportional hazards assumption (global P=0.18). Stent-related complications occurred in 16.7% of patients (migration 5.0%, infection 3.3%, biliary leak 1.7%, recurrent jaundice 6.7%).

    Conclusion

    Sequential PTBD and biliary stenting provides effective biliary decompression with a median stent patency of 12 months but only limited impact on OS, which is dominated by disease stage. Covered stents improved patency and were associated with a modest survival advantage after adjustment. Prospective, multicenter studies are required to confirm these findings and to explore integration with systemic therapies.

    Keywords: Biliary Stent, Interventional Radiology, Obstructive Jaundice, Palliative Care, Pancreatic Cancer, PTBD
  • مهدی عبدالرشیدی، سبحان عیسی زاده، حدیث اشرفی زاده، محمود ثالثی، سلمان برسته*، مریم رسولی، محسن ملاهادی
    زمینه و هدف

    دانشجویان علوم پزشکی به دلیل ماهیت رشته تحصیلی و محیط آموزشی خود، بیشتر از سایر دانشجویان با موقعیت های مرتبط با مرگ مواجه می شوند. بنابراین، برخورداری از سطح بالاتری از دانش و مهارت های مرتبط با مرگ که تحت عنوان «سواد مرگ» شناخته می شود، می تواند به این افراد کمک کند تا درباره مرگ تامل کنند و در زمینه دسترسی، درک و تصمیم گیری آگاهانه درباره مرگ و گزینه های مراقبت پایان زندگی نقش موثرتری ایفا نمایند. بر این اساس، مطالعه حاضر با هدف شناسایی عوامل مرتبط با سواد مرگ در میان دانشجویان پزشکی ایران در سال 2024 انجام شد.

    روش ها

    این مطالعه مقطعی در سال 2024 بر روی 440 دانشجوی علوم پزشکی شهر تهران انجام شد. نمونه گیری به روش در دسترس و از طریق پرسشنامه آنلاین صورت گرفت. ابزار پژوهش شامل پرسشنامه اطلاعات جمعیت شناختی و مقیاس سواد مرگ بود که با روش ترجمه Forward- Backward به فارسی برگردانده شد. پیش از شروع مطالعه، اهداف و روش پژوهش برای شرکت کنندگان توضیح داده شد و پس از اخذ رضایت نامه آگاهانه، پرسشنامه ها توسط دانشجویان با حفظ محرمانگی تکمیل شد. برای بررسی عوامل موثر بر سواد مرگ، از آزمون t مستقل و Hierarchical Regression Analysis استفاده شد. سطح معناداری آماری برای تمامی آزمون ها 0/05 در نظر گرفته شد.

    یافته ها

    در مجموع 440 دانشجوی علوم پزشکی با میانگین سنی 22/79 ±25/4 سال در این مطالعه شرکت کردند. نتایج آزمون t مستقل نشان داد که شش عامل با سواد مرگ ارتباط معنادار داشتند: مردان نمره سواد مرگ بالاتری نسبت به زنان داشتند  (P = 0.002)، نژاد فارس نسبت به سایر نژادها سواد مرگ کمتری داشت  (P = 0.02)، تجربه مراقبت بیش از سه ماه از یکی از اعضای خانواده با نمره بالاتر سواد مرگ همراه بود (P<0.001)، تعامل بیشتر با همسایگان (P<0.001)، ارزشیابی مثبت اعتقادات مذهبی (P<0.001) و داشتن فردی قابل اعتماد برای دریافت کمک (P = 0.04) نیز با سواد مرگ بالاتر ارتباط داشتند. تحلیل رگرسیون سلسله مراتبی نشان داد که مدل نهایی 9/11 درصد از واریانس سواد مرگ را تبیین می کند (F = 8.88, P<0.001) و جنسیت (P = 0.03)، اعتقادات مذهبی (P = 0.04)، تجربه مراقبت از عضو خانواده (P<0.001)، تعامل با همسایگان (P<0.001) و داشتن فردی برای دریافت کمک (P = 0.02) به عنوان عوامل پیش بینی کننده معنادار باقی ماندند.

    نتیجه گیری

    مطالعه حاضر نشان داد که سطح سواد مرگ در میان دانشجویان علوم پزشکی تحت تاثیر مجموعه ای از عوامل فردی و اجتماعی قرار دارد. نتایج بیانگر آن بود که جنسیت، اعتقادات مذهبی، تجربه مراقبت طولانی مدت از اعضای خانواده، میزان تعامل اجتماعی با همسایگان و داشتن فردی قابل اعتماد برای دریافت کمک، مهم ترین پیش بینی کننده های سواد مرگ هستند. با توجه به نقش این عوامل، طراحی مداخلات آموزشی و حمایتی که تجربه های عملی، تقویت ارتباطات اجتماعی و توجه به ابعاد فرهنگی و اعتقادی را در برگیرد، می تواند به ارتقای سواد مرگ در دانشجویان کمک کند. این یافته ها اهمیت رویکردی جامع و چندبعدی را در آموزش موضوعات مرتبط با مرگ و مراقبت پایان زندگی برجسته می سازد.

    کلید واژگان: مرگ، سواد مرگ، مرگ و میر، مراقبت تسکینی، پایان زندگی، نگرش نسبت به مرگ، هاسپیس
    Mahdi Abdorrashidi, Sobhan Eisazadeh, Hadis Ashrafizadeh, Mahmood Salesi, Salman Barasteh*, Maryam Rassouli, Mohsen Mollahadi
    Background & aim

    Medical science students, due to the nature of their field of study and educational environment, encounter death-related situations more frequently than other students. Therefore, possessing a higher level of knowledge and skills related to death- known as “death literacy”- can help them reflect on death and play a more effective role in accessing, understanding, and making informed decisions about death and end-of-life care options. Accordingly, the present study was conducted to identify factors associated with death literacy among Iranian medical students in 2024.

    Methods

    This cross-sectional study was carried out in 2024 on 440 medical science students in Tehran. Convenience sampling was performed using an online questionnaire. The research instruments included a socio-demographic questionnaire and the Death Literacy Index, which was translated into Persian using the forward–backward translation method. Before the study began, the research objectives and procedures were explained to participants, and questionnaires were completed confidentially after obtaining informed consent. Independent t-tests and hierarchical regression analysis were used to examine factors influencing death literacy. A significance level of 0.05 was considered for all tests.

    Results

    A total of 440 medical science students with a mean age of 22.79 ± 4.25 years participated in the study. Independent t-test results indicated that six factors were significantly associated with death literacy: males had higher death literacy scores than females (P = 0.002); Persian ethnicity had lower death literacy compared to other ethnicities (P = 0.02); caring for a family member for more than three months was associated with higher death literacy (P<0.001); greater interaction with neighbors (P<0.001), positive evaluation of religious beliefs (P<0.001), and having someone trustworthy to seek help from (P = 0.04) were also associated with higher death literacy. Hierarchical regression analysis showed that the final model explained 11.9% of the variance in death literacy (F = 8.88, P<0.001), and gender (P = 0.03), religious beliefs (P = 0.04), caregiving experience for a family member (P<0.001), interaction with neighbors (P<0.001), and having someone to receive help from (P = 0.02) remained significant predictors.

    Conclusion

    This study demonstrated that the level of death literacy among medical science students is influenced by a combination of individual and social factors. The results indicated that gender, religious beliefs, long-term caregiving experience, social interaction with neighbors, and having a trusted person to seek help from are the most important predictors of death literacy. Given the role of these factors, designing educational and supportive interventions that incorporate practical experiences, strengthen social connections, and address cultural and religious dimensions may improve death literacy among students. These findings highlight the importance of a comprehensive and multidimensional approach to teaching topics related to death and end-of-life care.

    Keywords: Death, Death Literacy, Mortality, Palliative Care, End Of Life, Attitude To Death, Hospice
  • Shima Sadat Aghahosseini, Maryam Karami, Maryam Rassouli, Mohammadesmaeil Akbari, Hamideh Ebrahimi*, Kazem Najafi
    Background

    Palliative care is a holistic approach aimed at enhancing the quality of life for patients with cancer. Given the rising number of cancer patients in Iran, its significance has become increasingly apparent. This study investigates the effect of palliative care on the quality of life and satisfaction of patients with cancer.

    Methods

    This before-and-after quasi-experimental study was conducted in 2024 on 320 patients with breast, tongue, stomach, thyroid, osteosarcoma, and colon cancer at a teaching hospital in Tehran, Iran. Participants were selected through convenience sampling based on eligibility criteria, including being over 18 years of age, having literacy, being able to speak Persian, and being psychologically stable. The quality of life and life satisfaction of patients were assessed before and after participation in a structured palliative care program. The intervention consisted of six two-hour palliative care sessions, delivered over two months. Data were collected using the Satisfaction with Life Scale (SWLS) and the EORTC QLQ-C30 Quality of Life Questionnaire. Data analysis was conducted using SPSS software, version 26, and a paired t-test was employed for statistical evaluation.

    Results

    The results indicated that the participants had a mean age of 50.67 years, with a standard deviation of 13.23 years. After receiving palliative care, the overall quality of life score, along with its dimensions (except for emotional functioning, sore throat, and diarrhea), showed a significant improvement (P < 0.001, Cohen’s d = 2.36). Moreover, the intervention led to a significant improvement in patients' life satisfaction, with a p-value of less than 0.001 and a Cohen’s d of 1.01.

    Conclusion

    The study findings demonstrated that palliative care services, typically provided to individuals nearing the end of life, enhanced the quality of life for cancer patients. Policymakers should prioritize support for patients, and healthcare managers must collaborate to improve and provide palliative care services with qualified personnel, especially nurses.

    Keywords: Palliative Care, Quality Of Life, Patient Satisfaction, Neoplasms
  • Alireza Vasiee, Zahra Askari, Maryam Veisi, Zeynab Saraei, Maryam Pakseresht *
    Background

    Childhood malignancies give parents and children substantial psychological anguish and life disruption. One of the best strategies to enhance cancer patients’ lives is palliative care. The present study aims to define the palliative care needs of families with children with cancer, identify strategies to address these needs, educate nursing staff to react as much as possible, and improve health care services.

    Materials and Methods

    The current research was a qualitative investigation undertaken with the involvement of families of children diagnosed with cancer who were sent to educational hospitals in Ilam City in 2024. The data were collected via purposive sampling. Subsequently, data were gathered using semistructured interviews, and a guided content analysis was conducted for data analysis. The first stage of coding started by identifying the analysis unit, which encompasses words, phrases, topics, and sentences that possess distinct meanings. The primary ideas inside each analysis unit will be organized under the heading of the semantic unit.

    Results

    This study included 10 individual interviews with diverse subjects. The interviews revealed four main categories and 12 subcategories of palliative care needs for families with children with cancer: psychological care (mental distress, homesickness, cancer taboo, and collapse of mental image), social care (lack of coherent support network, financial challenges, displacement, and out‑of‑hospital/telephone care), and physical care. Rethinking Spirituality was removed.

    Conclusions

    Palliative care for children addresses medical, psychological, social, and spiritual issues to improve quality of life for the child and family. Correct and ethical treatment based on clinical recommendations is crucial.

    Keywords: Cancer Pain, Child, Nursing, Palliative Care, Qualitative Research
  • Vitoria Arantes, Jordan Jones, Thaís Giansante, Simone Ribeiro, Juliana Pelegrino, Fabiana Bolela*
    Background & Aim

     Palliative care is an approach designed to enhance the quality of life and alleviate suffering associated with life-threatening illnesses. It should also be included in Home Care Services. This study aimed to identify the needs of patients in palliative care and their caregivers from the perspective of Home Care Service providers.

    Methods & Materials

     This qualitative research study was conducted with a multidisciplinary team of providers under the Home Care Service program in the interior of São Paulo state, Brazil. Data were collected through semi-structured interviews and analyzed using the Content Analysis method.

    Results

    Three categories emerged from the provider's narratives: insufficient knowledge about palliative care, the needs of patients in palliative care, and the needs of caregivers of patients in palliative care. Additionally, nine subcategories were identified: palliative care as end-of-life care, palliative care as an opportunity to provide comfort measures, lack of palliative care training for the multidisciplinary team, pain management, nutrition, emotional support, and psychological care, presence of family members, psychological support, and assistance in care management.

    Conclusion

    This study identified the needs of patients in palliative care and their caregivers from the perspective of Home Care staff. The primary needs of patients, as identified by the staff, encompassed both physical and psychosocial support, including the presence of family members. For these patients’ caregivers, staff emphasized the importance of psychological support and assistance in managing care. The study highlights the importance of continuous education in the home palliative care setting that recognizes the needs of both patients and caregivers.

    Keywords: Palliative Care, Home Care Services, Primary Health Care
  • Amin Sattari, Mojtaba Miladinia*, Samaneh Alinejad Mofrad, Sakineh Akbari, Sadegh Ahmadi-Mazhin
    Context 

    Integrating palliative care (PC) into oncology is essential for improving the quality of life (QoL) of patients with cancer. This review aims to provide a comprehensive and critical analysis of the current nursing perspective on cancer-related symptom management in PC, while identifying gaps and opportunities for improving PC services in Iran. 

    Evidence Acquisition 

    This study was designed as a state-of-the-art (SotA) review methodology to provide a comprehensive and analytical up-to-date synthesis of the current state of knowledge on PC in oncology nursing. A literature search was conducted across international and national databases, including Scopus, PubMed, Google Scholar, Web of Science, SID, Magiran, and Islamic World Science and Technology Monitoring and Citation Institute (ISC), covering studies published from 2014 to 2025. The focus was on articles addressing nurses’ roles, care strategies, and challenges in symptom management within PC settings.

    Results

    Oncology nurses in Iran play a key role in managing cancer-related symptoms across physical, psychological, social, and spiritual domains. However, their ability to deliver comprehensive care is hindered by limited specialized training, unclear national policies, nursing shortage, and cultural barriers. Most Iranian studies focus on single symptoms rather than symptom clusters, and the use of digital tools such as telemedicine remains minimal.

    Conclusions

    Oncology nurses in Iran play a critical role in symptom management, but face barriers such as limited training in PC, workforce shortages, cultural sensitivities, and policy gaps. Increasing training, developing national frameworks, and utilizing telemedicine can improve the quality and access to PC.

    Keywords: Palliative Care, Palliative Care Nursing, Hospice Care, End-Of-Life, Oncology Nursing
  • Kourosh Zarea, Mohammad Adineh*, Pouriya Darabiyan, Alireza Salar
    Context

    Palliative care plays an important and vital role in reducing pain and suffering among patients receiving treatment in critical care settings. This narrative review was conducted in 2025 with the aim of reviewing the existing evidence on models, interventions, and challenges associated with implementing palliative care in the intensive care unit (ICU). 

    Evidence Acquisition

    This study was a narrative review of the existing evidence regarding interventions, models, and outcomes of palliative care in adult ICU patients. Between January 2010 and July 2025, an extensive literature search was performed across databases including PubMed, Scopus, Embase, Web of Science, Google Scholar, Magiran, Irandoc, and SID. Eligible studies included peer-reviewed publications focusing on palliative care in the ICU for populations aged ≥ 18 years, published in English or Persian. Following screening and quality assessment, 19 articles were included in the final analysis.

    Results

    Among the 19 selected studies (7 narrative reviews with expert consensus, 2 narrative reviews, 2 systematic reviews with meta-analysis, 3 systematic reviews, 3 interventional studies, and 1 mixed-methods study), two primary models of ICU palliative care integration were identified: The consultative model and the integrative model. The success of these approaches depended on specialized training for nurses and physicians, standardized protocols, and interprofessional collaboration, although a lack of training and resources remained a significant challenge. The use of appropriate screening criteria and triggers can enhance access to and the quality of palliative care in the ICU.

    Conclusions

    Palliative care in the ICU, whether through an integrative or consultative model, improves care quality, alleviates physical and psychological symptoms in critically ill patients, increases family satisfaction, and optimizes resource utilization. Nurses play a central role in delivering these interventions, and specialized training, standardized protocols, and interprofessional collaboration are prerequisites for their successful implementation. Palliative care should be an integral part of the management of all critically ill patients, not solely end-of-life care, and evidence-based policymaking along with the development of a supportive organizational culture facilitates its implementation.

    Keywords: Palliative Care, Critical Care, Intensive Care Units, Terminal Care, Health Services Integration, Models, Organizational, Health Care Barriers
  • سولماز موسوی، کاملیا روحانی *
    سابقه و هدف

    مراقبت معنوی یکی از جنبه های اساسی در بهبود کیفیت زندگی بیماران در پایان زندگی شناخته می شود. این نوع مراقبت با تاکید بر نیازهای روانی، معنوی و اخلاقی بیماران، نقش مهمی در تسهیل فرایند پذیرش و کاهش استرس های مرتبط با بیماری های پیشرفته ایفا می کند. با توجه به پیچیدگی های مراقبت در این مرحله حساس، شناخت ابعاد مختلف مراقبت معنوی و چگونگی معرفی آن، اهمیت ویژه ای دارد. با توجه به اهمیت این دوران، این مطالعه با هدف تدوین توصیه های مبتنی بر شواهد برای بیماران در مرحله انتهای زندگی صورت گرفته است.   

    روش کار

    این مطالعه چندروشی در چند مرحله طراحی شده است. مطالعه کیفی شامل یک تحلیل محتوای قراردادی بود که از طریق مصاحبه های نیمه ساختاریافته با 18 شرکت کننده صورت گرفت. بخش مرور نظام مند از طریق جست وجوی نظام مند در پایگاه های اطلاعاتی داخل و خارج  انجام شد. بعد از تلفیق یافته ها، مرحله معتبرسازی از طریق فن دلفی انجام شد. در این پژوهش همه موارد اخلاقی رعایت شده است و مولفان مقاله تضاد منافعی گزارش نکرده اند.

    یافته ها

    مراقبت معنوی در پایان زندگی نیازمند ارزیابی جامع بیمار و خانواده، مهارت های ارتباطی موثر، مدیریت علائم، مشارکت در تصمیم گیری، احترام به باورهای فرهنگی و مذهبی و حمایت روانی در دوران سوگ است.

    نتیجه گیری

    یافته ها نشان داد مراقبت معنوی در انتهای زندگی با رویکردی جامع و مبتنی بر شواهد، نقش مهمی در ارتقای کیفیت زندگی بیماران و حمایت از خانواده ها دارد. توجه به ابعاد جسمی، روانی، اجتماعی و فرهنگی، توسعه مهارت های ارتباطی و مشارکت خانواده، به بهبود تجربه بیماران کمک می کند. اجرای توصیه های مبتنی بر شواهد و بومی سازی راهنماها می تواند کیفیت مراقبت را در نظام سلامت ارتقا بخشد.

    کلید واژگان: انتهای زندگی، مراقبت تسکینی، مراقبت معنوی، معنویت
    Soolmaz Moosavi, Camelia Rohani*
    Background and Objective

    Spiritual care is recognized as a vital element in enhancing the quality of life for patients at the end of their lives. This type of care, by focusing on psychological, spiritual, and ethical needs, plays a fundamental role in facilitating the acceptance process and reducing stress associated with advanced diseases. Considering the complexities of this sensitive stage, the present study was conducted with the aim of developing evidence-based recommendations for spiritual care for patients at the end-of-life stage.

    Methods

    This was a mixed-methods study conducted in several phases. The qualitative phase involved content analysis of semi-structured interviews with 18 participants. In the second phase, a systematic search and review of national and international databases was conducted. After integrating the findings from both phases, validation of the recommendations was performed by the Delphi technique. In the present study, all ethical considerations were observed and the authors reported no conflict of interests.

    Results

    Spiritual care at the end of life requires comprehensive assessment of the patient and family, effective communication, symptom management, shared decision-making, respect for cultural and religious values, and psychological support during bereavement.

    Conclusion

    The findings revealed that spiritual care at the end of life, with a comprehensive and evidence-based approach, plays a significant role in enhancing patients' quality of life and supporting families. Attention to physical, psychological, social, and cultural dimensions, development of communication skills, and family involvement contributes to improving the patient experience. Implementing evidence-based recommendations and localizing guidelines can enhance the quality of care within the healthcare system.

    Keywords: Palliative Care, Spirituality, Spiritual Care, The End Of Life
  • علیرضا ایرج پور، مریم السادات هاشمی*
    مقدمه

    تفاوت بسترهای فرهنگی، سیاسی، اجتماعی، اقتصادی و بهداشتی ایران با کشورهای پیشرو در توسعه نقش های تخصصی پرستاران، لزوم شناسایی ابعاد مختلف گسترش نقش های تخصصی پرستاران و موانع رشد این نقش ها را اجتناب ناپذیر می کند؛ بنابراین پژوهش حاضر، با هدف شناسایی چالش های توسعه نقش مشاوره ای پرستاران، در مراقبت تسکینی انجام شد.

    روش کار

    پژوهش حاضر، بخشی از مطالعه اقدام پژوهی است که به صورت کیفی، با رویکرد تحلیل محتوای مرسوم، به روش گرانهایم و لوندمن (15 مرداد 1403 تا 14 آبان 1403) انجام یافت. مشارکت کنندگان، 20 نفر از اعضای هیئت علمی پرستاری بودند که به صورت نمونه گیری هدفمند، وارد مطالعه شدند. داده ها، از طریق مصاحبه نیمه ساختارمند حضوری  و به صورت فردی، مورد جمع آوری قرار گرفتند. تمام داده ها، پس از ضبط و پیاده سازی از طریق تحلیل محتوای کیفی و با استفاده از نرم افزار مکس کیودا نسخه 2020، مورد تجزیه و تحلیل قرار گرفتند. به منظور اطمینان از صحت یافته های پژوهش، چهار معیار اعتبار یا مقبولیت، قابلیت اعتماد یا همسان بودن، قابلیت انتقال و تاییدپذیری که توسط گوبا و لینکلن، برای استحکام تحقیقات کیفی پیشنهاد شده، استفاده گردید.

    یافته ها

    در راستای «تبیین چالش های توسعه نقش ه ای مشاوره ای پرستاران، در مراقبت تسکینی» با تجزیه و تحلیل داده ها، 500 کد اولیه، 26 زیرطبقه، 8 طبقه فرعی و 3 طبقه اصلی چالش های فردی، سازمانی و بافتاری توسعه نقش های تخصصی پرستاران، پدیدار شد. طبقات اصلی عبارت اند از: چالش های فردی؛ 2 طبقه فرعی (چالش های مربوط به ویژگی های شخصیتی و توانمندی)، چالش های سازمانی؛ 2 طبقه فرعی (چالش های مربوط به جذب، تامین و آموزش نیروی انسانی و چالش های مربوط برنامه ریزی و سیاست گذاری مدیران سازمانی) و چالش های بافتاری؛ از 4 طبقه فرعی (چالش های فرهنگی، اقتصادی، سیاستگذاری و تعیین قانون و مقررات توسعه نقش های تخصصی پرستاران و بالاخره چالش همکاری های بین حرفه ای) تشکیل شدند.

    نتیجه گیری

    با سیاستگذاری و تعیین قانون و مقررات توسعه نقش، برقراری پروانه صلاحیت تخصصی، تعرفه گذاری خدمات مشاوره پرستاری، پوشش بیمه ای خدمات مشاوره، تدوین برنامه های آموزشی و توسعه همکاری های بین حرفه ای، به عنوان استراتژی پیشران مراقبت های حمایتی - تسکینی می توان، به توسعه نقش های تخصصی پرستاران پرداخت.

    کلید واژگان: گسترش نقش، مراقبت تسکینی، پرستار، تحلیل محتوا، ایران
    Alireza Irajpour, Maryam Hashemi *
    Introduction

    The difference between Iran's cultural, political, social, economic and health contexts and the leading countries in the development of the specialized roles of nurses makes it inevitable to identify the various aspects of the expansion of the specialized roles of nurses and the obstacles to the development of these roles; Therefore, the present study was conducted with the aim of identifying the challenges of developing the consultative role of nurses in palliative care.

    Method & Materails

    The current research is a part of the action research study that was conducted qualitatively, with the conventional content analysis approach, by the Granheim and Lundman method (August 15, 2024 to November 14, 2024). The participants were 20 nursing faculty members who were included in the study through purposive sampling. Data were collected through face-to-face and individual semi-structured interviews. All the data were analyzed after recording and implementation through qualitative content analysis using Max Kyoda software version 2020. In order to ensure the validity of the research findings, four criteria of validity or acceptability, reliability or similarity, transferability and verifiability suggested by Goba and Lincoln for the strength of qualitative research were used.

    Results

    In line with "explaining the challenges of developing the consultative roles of nurses in palliative care" by analyzing the data, 500 primary codes, 26 subcategories, 8 subcategories and 3 main categories of individual, organizational and contextual challenges in the development of nurses' specialized roles emerged. The main classes are: individual challenges; 2 sub-classes (challenges related to personality traits and capabilities), organizational challenges; 2 sub-classes (challenges related to recruitment, supply and training of human resources and challenges related to planning and policy making of organizational managers) and textural challenges; They were formed from 4 sub-classes (cultural and economic challenges, policy-making and determining the law and regulations for the development of the specialized roles of nurses and finally the challenge of interprofessional cooperation).

    Conclusion

    By politicizing and determining role development laws and regulations, establishing specialized qualification licenses, pricing nursing consulting services, insurance coverage for consulting services, developing training programs and developing interprofessional collaborations, as a strategy for driving support and palliative care, it is possible to develop the specialized roles of nurses.

    Keywords: Role Expansion, Palliative Care, Nurse, Content Analysis, Iran
  • Asal Sadat Niaraees Zavare, Elham Moazam, Karim Sohrabi, Elaheh Najafi Shahkoohi, Atefeh Najafi Shahkoohi, Fatemeh Rezaei*
    Background

    Palliative care constitutes an integral component of the healthcare emergency response system. This study investigated palliative care services in Iran during the COVID-19 pandemic, with the objectives of documenting adaptations and developing a roadmap for future health crises. The findings aim to promote inter-institutional collaboration, inform policy, enhance care quality, and emphasize the importance of maintaining patient dignity in emergency situations.

    Materials and Methods

    A qualitative research methodology was employed in two primary phases in 2022. In the initial phase, semi-structured interviews were conducted and analyzed utilizing an inductive approach. The study implemented a purposive sampling method, followed by snowball sampling, to achieve data saturation. Data saturation was attained after 17 interviews. The participants comprised medical personnel engaged in the care of patients infected with the virus. Concepts and categories were derived using MAXQDA 2018.1. In the second phase, expert panels were convened, and key informants in the field of palliative care were invited to provide recommendations regarding the reorganization of the initially developed categories. 

    Results

    The results demonstrated the implementation of novel approaches in palliative care across seven principal domains, including effective and compassionate communication and care coordination, management of pain and other symptoms, psychosocial care, spiritual care, complementary and traditional medicine, end-of-life, grief, and bereavement care, and support for care providers. The study revealed that, in the context of the ongoing pandemic in Iran, the establishment of palliative care services has reached unprecedented levels compared to other similar crises.

    Conclusion

    This study examined the adaptations in palliative care implemented during the ongoing pandemic, emphasizing the necessity of evaluating these emerging practices and integrating palliative care into future epidemic guidelines to ensure comprehensive patient support during crises. It underscores the need for continuous research and the formulation of new policies in this field.

    Keywords: Palliative Care, Pandemic, COVID-19
  • سعیده حمله داری*، احمد فاضلی، روح الله موسوی زاده
    زمینه و هدف

    نوجوانان مبتلا به بیماری های صعب العلاج، علاوه بر رنج جسمانی، با چالش ها و تعارضات معنوی عمیقی مواجه می شوند که توجه به آن در فرآیند مراقبت جامع پرستاری ضروری است. این مطالعه با هدف طراحی ساختار محتوایی یک فرم شرح حال معنوی برای ارزیابی نظام مند این نیازها در نوجوانان انجام شد.

    روش ها

    این مطالعه کیفی با رویکرد توسعه ای در پنج مرحله انجام شد: 1) مرور نظام مند منابع علمی و استخراج مفاهیم کلیدی، 2) تدوین ساختار اولیه فرم بر اساس تحلیل محتوای استقرایی، 3) اعتباربینی محتوایی و اصلاح ساختار از طریق فرآیند دلفی دو مرحله ای با حضور 15 متخصص در حوزه های پرستاری، روان شناسی، اخلاق پزشکی و مراقبت معنوی، 4) بازبینی نهایی بر اساس نظرات پانل متخصصان،  و 5) تحلیل و تثبیت ساختار نهایی.

    یافته ها

    ساختار نهایی فرم در 7 بخش اصلی و 59 مولفه فرعی سازماندهی شد: 1) اطلاعات دموگرافیک (5 مولفه)، 2) شرح حال معنوی (4 مولفه)، 3) غربالگری معنوی با 20 نشانگر کلیدی پریشانی معنوی، 4) والدگری معنوی (6 مولفه)، 5) چالش های معنوی در 6 حیطه (جسمانی، عاطفی، اجتماعی، تحصیلی، هویتی، عوارض درمان)، 6) تعارضات معنوی (5 نوع تعارض)، و 7) نیازهای معنوی در قالب روابط چهارگانه (خدا، خود، دیگران، طبیعت).

    نتیجه گیری

    مطالعه حاضر منجر به طراحی و اعتباربینی یک چارچوب جامع و چندبعدی برای ثبت شرح حال معنوی نوجوانان مبتلا به بیماری های صعب العلاج گردید. این ساختار، با یکپارچه سازی ارزیابی وضعیت موجود (از طریق غربالگری و شرح حال) با شناسایی عوامل خطر پیشرونده (شامل چالش ها و تعارضات معنوی)، یک ابزار استراتژیک در اختیار پرستاران قرار می دهد. این امر، گذار از مراقبت معنوی واکنشی به سمت مراقبت پیشگیرانه و شخصی شده را ممکن ساخته و با هدف نهایی کاهش پریشانی معنوی و ارتقای تاب آوری در این جمعیت آسیب پذیر، نقشه راه عملیاتی ارائه می نماید.

    کلید واژگان: ارزیابی معنوی، نوجوان، بیماری های سخت درمان، پریشانی معنوی، مراقبت تسکینی
    Saeideh Hamledari*, Ahmad Fazeli, Rohollah Mousavizadeh
    Background and Aim

    Adolescents with life-threatening illnesses face profound spiritual challenges and conflicts in addition to physical suffering, making attention to these issues essential in comprehensive nursing care. This study aimed to design the content structure of a spiritual history form for the systematic assessment of these needs in adolescents.

    Methods

    This qualitative, development-oriented study was conducted in five stages: 1) a systematic review of scientific resources and extraction of key concepts, 2) development of a preliminary form structure based on inductive content analysis, 3) content validation and structural refinement via a two-round Delphi process with a panel of 15 experts in nursing, psychology, medical ethics, and spiritual care, 4) final revision based on panel feedback, and 5) analysis and stabilization of the final structure.

    Results

    The final structure of the form was organized into 7 main sections and 29 sub-components: 1) Demographic Information (5 sub-components), 2) Spiritual History (4 sub-components), 3) Spiritual Screening with 20 key indicators of spiritual distress, 4) Spiritual Parenting (6 sub-components), 5) Spiritual Challenges across 6 domains (physical, emotional, social, academic, identity, treatment side effects), 6) Spiritual Conflicts (5 types of conflicts), and 7) Spiritual Needs within the four relational domains (God/Higher Power, Self, Others, Nature).

    Conclusion

    This study led to the development of a comprehensive framework for spiritual assessment in adolescents with life-threatening illnesses. The developed structure, by integrating current state assessment and risk factor identification, enables a shift toward preventive and personalized spiritual care, providing an effective clinical tool to reduce spiritual distress and enhance resilience in this vulnerable population.

    Keywords: Spiritual Assessment, Adolescent, Life-Threatening Illness, Spiritual Distress, Palliative Care
  • سمیه پوی، زهرا طاهری ازبرمی، مریم رسولی، بهرام دربندی، سامان معروفی زاده، نازیلا جوادی پاشاکی*
    زمینه

    ارائه مراقبت تسکینی باکیفیت که از حقوق اساسی کودکان مبتلا به سرطان است، به ارتقای کیفیت زندگی و رضایتمندی کودک و خانواده منجر خواهد شد. ارزیابی کیفیت مراقبت به منظور انجام اقدامات اصلاحی اهمیت دارد.

    هدف

    پژوهش حاضر با هدف تعیین کیفیت مراقبت تسکینی کودکان مبتلا به سرطان در شمال ایران انجام شد.

    روش ها

     این مطالعه توصیفی مقطعی بر روی 200 نفر از والدین کودکان مبتلا به سرطان مراجعه کننده به مرکز آموزشی و درمانی 17 شهریور رشت در سال 1402 انجام شد. نمونه ها به روش در دسترس براساس معیارهای ورود انتخاب شدند. معیارهای ورود شامل والدینی بودند که دارای کودک مبتلا به سرطان بودند، جهت شرکت در مطالعه علاقه مند و از توانایی خواندن برخوردار بودند. معیارهای خروج شامل عدم تکمیل کامل پرسش نامه ها و وجود هرگونه اختلالات روانی یا بیماری جسمی در والدین بود که مانع مشارکت آن ها در مطالعه می شد. ابزار مورد استفاده شامل پرسش نامه کیفیت مراقبت تسکینی بود. این پرسش نامه دارای 15 گویه و 4 بعد (ارتباط با خانواده، مشارکت خانواده، اشتراک اطلاعات در میان کارکنان سلامت، حمایت از خواهران و برادران) بود. پاسخ به هر گویه گستره ای از نمرات صفر (هرگز) تا 4 (همیشه) را شامل می شد و نمره کل از صفر تا 100 را در بر می گرفت. داده ها بعد از ورود به نرم افزار SPSS نسخه 22 با استفاده از آزمون های آماری توصیفی تحلیل شدند.

    یافته ها

     میانگین سنی والدین 5/86± 37/83 بود. میانگین نمره کیفیت مراقبت تسکینی برای کودکان مبتلا به سرطان 0/34± 29/54 به دست آمد. کمترین میانگین نمره مربوط به بعد حمایت از سایر فرزندان (0/34± 4/1) بود.

    نتیجه گیری

     یافته ها نشان داد کیفیت مراقبت تسکینی ارائه شده برای کودکان مبتلا به سرطان کمتر از میانگین بوده و در برخی ابعاد، به ویژه حمایت از سایر فرزندان خانواده و اشتراک اطلاعات در میان کارکنان سلامت نیازمند توجه بیشتری است. در این راستا توصیه می شود تا با برنامه ریزی مناسب، زمینه برای بهبود این ابعاد و در نتیجه ارائه مراقبت تسکینی باکیفیت در این جمعیت فراهم شود.

    کلید واژگان: مراقبت تسکینی، کیفیت مراقبت، سرطان، کودکان، ایران
    Somaye Pouy, Zahra Taheri-Ezbarami, Maryam Rassouli, Bahram Darbandi, Saman Maroufizadeh, Nazila Javadi-Pashaki*
    Background

    Providing high-quality palliative care, as one of the basic rights of children with cancer, leads to the improvement of the quality of life and satisfaction of the child and family. It is important to evaluate the quality of care to take corrective actions. Hence, the present study was conducted to determine the quality of palliative care for children with cancer in northern Iran.

    Objective

    The present study aimed to determine the quality of palliative care for children with cancer in northern Iran.

    Methods

    This descriptive cross-sectional study was conducted on 200 parents of children with cancer who were referred to the 17-Shahrivar Educational and Remedial Center in Rasht City, Iran, in 2023. The samples were selected by convenience sampling methods according to the inclusion criteria. The inclusion criteria were parents who had a child with cancer, were interested in participating in the study, and could read. Meanwhile, the exclusion criteria were failure to complete the questionnaires and the presence of any mental disorders or physical illness in the parents that prevented their participation in the study. The instrument used included the palliative care quality questionnaire. This questionnaire has 15 items and 4 dimensions (communication with family, family participation, information sharing among health workers, support of siblings), the answer to each item includes a range of scores from 0 (never) to 4 (always), and the total score ranges from 0 to 100. After entering the data into the SPSS software, version 22, the data were analyzed using descriptive statistical tests.

    Results

    The average age of the parents was 37.83±5.86 years. The average quality of palliative care score for children with cancer was 29.54±0.34. The lowest average score was related to the dimension of supporting siblings (4.1±0.34). 

    Conclusion

    The quality of palliative care provided to children with cancer is lower than average and needs more attention in some aspects, especially the support of siblings. Accordingly, it is recommended to provide proper planning to improve these dimensions and provide high-quality palliative care in this population.

    Keywords: Palliative Care, Quality Of Care, Cancer, Children, Iran
  • Nabila Elamri *, Ibtissam Atif, Aissam Lyazidi, Mourad Rattal, Abdellah Gantare
    Background
    Progressive neurological disorders (PNDs) are a real public health challenge with significant impact on patients’ quality of life. Limited research exists on PNDs social impact in low- and middle-income countries.
    Aim
    The present study was conducted with aim to explore the impact of PNDs on patients’ daily lives in the physical, social, professional, and financial levels.
    Method
    This cross-sectional study was conducted in 2024 on patients diagnosed with PND within the last 12 months. A survey developed by the authors focused on social and professional activities and financial stability, distributed through social networks communities.
    Results
    Data collection gathered 89 responses. The findings showed low regular health monitoring (59.5%), insufficient pain medication prescriptions (33.7%), significant decrease in social activities (t=4.920; p<0.005), and occupational activities (t=3.689; p<0.005) accompanied by a need of financial support for a large number of patientsImplications for Practice: The findings advocate for the implementation of specific health programs to manage PNDs from diagnosis to palliative care, build national database and develop research. Recognition of PNDs as disabilities and development of intersectoral collaborations will improve prevention and also living conditions of patients through the facilitation of work-retention and extension of social coverage. Awareness of professionals, community and policy makers must also be strengthened to ensure this category of disease visibility.
    Keywords: Degenerative Neurologic Disorders, Disability, Health Policy, Quality Of Life, Palliative Care
  • Maryam Karami, Mohammad Esmaeil Akbari, Abbas Abbaszadeh, Azam Shirinabadi Farahani, Hamid Alavi Majd, Maryam Rassouli *
    Background

    Palliative care improves the quality of life (QoL) and extends the survival of cancer patients. It is associated with reduced depression, improved physical and psychological symptoms, and increased patient satisfaction.

    Objectives

    This study aimed to assess the current status of palliative care provision for cancer patients in Iran.

    Methods

    This qualitative study was conducted in 2023 using 19 semi-structured interviews with health professionals, cancer patients at the Tajrish Hospital Cancer Clinic, and their family caregivers. Participants were selected through purposive sampling. Data were analyzed using conventional content analysis based on the approach of Graneheim and Lundman (2004). Themes from each main category were incorporated into a strengths, weaknesses, opportunities, and threats (SWOT) analysis. The trustworthiness of the data was evaluated using Lincoln and Guba’s criteria.

    Results

    Analysis resulted in 462 codes, 14 subcategories, and 5 main categories: (1) Comprehensive support, (2) effective communication, (3) uncertainty, (4) information seeking, and (5) infrastructure. These categories were mapped onto the SWOT matrix to identify strengths, weaknesses, opportunities, and threats.

    Conclusions

    The palliative care system in Iran remains in its developmental stages. To improve service delivery, it is essential to conduct a comprehensive assessment of its current state — including strengths, weaknesses, opportunities, and threats — and implement targeted interventions accordingly.

    Keywords: Palliative Care, Cancer, SWOT, Health Services Accessibility
  • Peyman Eshghi, Shamsollah Noripour, Nader Momtazmanesh, Leila Khanali Mojen
    Background

    Palliative care is a fundamental component of cancer care for children. However, access to pediatric palliative care (PPC) remains limited in low- and middle-income countries. One of the major challenges in developing and implementing PPC is the lack of evidence-based models. Sharing practical experiences in establishing PPC services in various countries, including Iran, can provide valuable insights for similar healthcare settings.

    Objectives

    This article aims to present the experiences and measures taken to establish and provide PPC at a major referral children's hospital in Iran, from inception to the present.

    Methods

    This study reports on the experience of establishing an outpatient pediatric palliative care clinic based on the World Health Organization (WHO) framework between 2021 and 2024 at Mofid Children's Hospital in Tehran, Iran.

    Results

    Following WHO guidelines, this project was implemented in 11 steps. Key challenges encountered during the process included stakeholder engagement, human resource shortages, training gaps, and service monitoring. The most effective solutions involved increasing knowledge and awareness about PPC, promoting formal and informal education, and leveraging support from charities and research institutions.

    Conclusions

    The establishment of a PPC clinic at a national referral children's hospital and the documentation of its outcomes can serve as a model for expanding these services across Iran. Additionally, this model may be adapted for implementation in other countries facing similar challenges.

    Keywords: Palliative Care, Children, Cancer, Model
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