هدف: هدف از پژوهش حاضر، شناسایی و اولویتبندی نیازهای اطلاعاتی خانواده کودکان سرطانی بود.
روش: پژوهش حاضر، پیمایشی کاربردی بوده و جامعه آماری آن، کلیهی 729 خانواده کودکان سرطانی مراجعهکننده به بیمارستان سیدالشهدای اصفهان (امید) در سال 1397 بود که بر اساس فرمول تعیین حجم نمونه کوکران 244 نفر به صورت روش نمونهگیری غیر احتمالی هدفمند و داوطلبانه بر اساس معیارهای ورود و خروج انتخاب شدند. ابزار پژوهش، پرسشنامه محققساخته دارای 15 پرسش اطلاعات جمعیتشناختی و 4 عامل با 48 گویه در مورد نیازهای اطلاعاتی خانواده کودکان سرطانی بود. روایی صوری و محتوایی پرسشنامه تعیین شده و پایایی کل آن از طریق آلفای کرونباخ 96/0 به دست آمد.
یافتهها: یافتهها نشان داد که از بین این 4 عامل، عامل «حمایتهای اجتماعی، اقتصادی و معنوی» اولویت اول، عاملهای «ارائه اطلاعات در مورد سرطان توسط کادر درمان» و « امکانات و خدمات سلامت و مشاوره» با هم اولویت دوم و عامل «دسترسی، ارائه و تبادل اطلاعات سلامت مرتبط» اولویت آخر بودند.
نتیجهگیری: ارزیابی منظم نیازهای اطلاعاتی والدین میتواند به ارائهدهندگان مراقبتهای سلامت کمک نماید تا با ارائه اطلاعات مورد نیاز آنان، موجب کاهش استرس و اضطراب خانوادهها و مشارکت بیشتر آنان در مراقبت از کودکان شده و در نهایت هزینههای درمانی خانوادهها و نظام سلامت کاهش یابد.
عنوان مقاله [English]
Identification and Prioritization the Information Needs of Families Who Had Children with Cancer
Background and Objectives: Cancer in children includes cases of cancer diagnosed in patients under 15 years old. In Iran, Cancer is the second cause of death for children under 14 and is the cause of 4% of deaths in children under 5 and 13% of deaths in children between 5 and 10 years old. In Isfahan province, a total of 600 children have been currently diagnosed with cancer which has increased to 729 cases since the start of this project in April 2018. Since family is the main and primary source of support for children, it is necessary to remember that any care provided by family members of children suffering from cancer is affected by their access to credible and suitable information. Therefore, the first condition for proper decision-making by these children’s families is access to accurate information and optimal use of this information. Patients require information that is timely, relevant, and easily understandable. The information needs of patients suffering from different conditions are also different. Furthermore, attention to the information needs of parents of young patients is as important as attention to the information needs of adult patients because young children are incapable of searching for relevant information and providing necessary self-care and these responsibilities are instead shouldered by their families. The reason for selecting this condition in the current study was the prevalence of cancer especially in the Isfahan region. The statistics provided by Isfahan’s Seyed-Al-Shohada (Omid) hospital also confirm this prevalence. Since the number of studies on this topic is small in Iran and since children are themselves unable to access information relevant to their condition which means access of their families to relevant information can play an important role in the control and treatment of their condition, the current study aimed to identify and prioritize the information needs of families of children with cancer visiting Isfahan’s Seyed-Al-Shohada (Omid) hospital to improve sharing health information and therefore facilitate their treatment.
Methodology: This is an applied study conducted using a survey approach. The study population consisted of the families of all 729 children suffering from cancer visiting Isfahan’s Seyed-Al-Shohada (Omid) hospital between April and September 2018. Based on the Cochran equation, the sample size of 244 was selected using purposeful noncertified sampling from volunteers meeting inclusion and exclusion criteria. The inclusion criteria included being family members with at least one child with cancer and a desire to participate in the study while the inclusion criteria were refusal to continue participating in the study. The data-gathering tool was a researcher-made questionnaire with two parts. The first part included 15 items related to demographic information and the second part contained 4 components and 48 items identified based on 35 interviews with families of children suffering from cancer which were scored based on a 5-degree Likert scale (1=very low, 2=low, 3=medium, 4=high, 5=very high). Among these items, the first component included 19 items, the second 15 items, the third one was 7 items, and the final and fourth components included 7 items. The formal and content validity of the questionnaire was confirmed by oncologists and experts on information-seeking behavior. The questionnaire’s reliability was calculated using Cronbach’s Alpha coefficient which was equal to 0.96 for the entire questionnaire, 0.95 for the first component, 0.93 for the second component, 0.91 for the third component, and 0.84 for the last component. Questionnaires were distributed and retrieved during face-to-face meetings. An informed consent form was signed by all participants and they were assured of the confidentiality of the information. An ethics code for the study was also acquired from Isfahan University of Medical Sciences. Data was analyzed using SPSS software with descriptive statistics (average and standard deviation) and analytical statistics (ANOVA with repeated observations, and LSD follow-up test).
Findings: To identify important information needs of patients’ families, a cutoff line of 0.75 of the total score (3.75 out of 5) was used. Based on this criterion, 33 items among the total of 48 items were identified as prioritized information needs of families, and 15 items were eliminated. The ANOVA test with repetition showed that there is a significant difference between the average information need scores of families in different components (P<0.001). The LSD follow-up test showed that the average score of the fourth component (social, financial, and spiritual support) was significantly higher than the second (providing information about cancer by medical staff) and third (healthcare and consultation facilities and equipment) components (P<0.001) while the average score of these two components was significantly higher than the first component (Access, retrieval and sharing of health information) (P<0.05). There was no significant difference between the average scores of the second and third components (P=0.10). Therefore, among the components of health information needs of families of cancer patients, the highest priority belonged to the fourth component (social, financial, and spiritual support), second (providing information about cancer by medical staff), and third (healthcare and consultation facilities and equipment) components had the next priority and the first component (Access, retrieval and sharing of health information) had the lowest priority. Furthermore, the average total score of health information needs for families of children with cancer was calculated to be 72.7 with a standard deviation of 16.1 from a total score of 100. The most important item in the first component of health information needs was “providing sufficient information to family members before and after surgery”; the most important item of the second component was “knowledge on treatment’s success chance”. Furthermore, the most important items for the third and fourth components were “access to physicians and medical staff for further questions” and “spiritual support of family members”, respectively.
Discussion: The results of the current study showed that the health information needs of families of children suffering from cancer are related to the health information needs of families of such children worldwide as well as the health information needs of families of sick children. However, there were some differences in the prioritization of health information needs which can be due to cultural, social, financial, and spiritual factors, type of disease, and children’s age group. The highest priority of families in the current study was financial, social, and spiritual support which can be due to– the financial difference between Iran with other countries. Furthermore, the component of access, retrieval, and sharing of the information has the lowest priority for the families and they prefer to gain their information from the medical staff. This difference can be due to differences in literacy levels compared to other countries and should be taken note of by the healthcare authorities. Finally, constant and regular assessment of health information needs of parents can help healthcare providers in providing timely and relevant information thus reducing the stress and anxiety of families, as well as improving their participation in self-case and homecare. On the other hand, low health literacy among family members and their reliance on information provided by medical staff means that clinical librarians can use access to various information sources to provide services to parents of children suffering from chronic conditions such as cancer, improve their information seeking skills and health literacy and play an indirect role in reducing the medical and healthcare costs of families and the country as a whole. Therefore, we suggest identifying and prioritizing the health information needs of families in other parts of the country and comparing the results to the results of the current study to acquire an overview of the health information needs of families of children with cancer in Iran. This information can then help policymakers and healthcare authorities in future planning and policymaking.