Hope in Iranian mothers of children with cancer: a descriptive correlational study.

PURPOSE: This study aims to examine the relationship between the level of hope in mothers who have a child with cancer and its related factors in Iran. METHOD: A cross-sectional and descriptive correlational design was used in this study. A demographic questionnaire and the Herth Hope Index (HHI) were administered to a sample of 240 mothers who have a child with cancer to assess level of hope. Mothers were also asked to indicate their highest priority hopes such as view of their supportive resources including financial support, psychosocial support, religiosity and spirituality. Data was analysed using descriptive statistics, Spearman's rho, independent sample t test and one-way ANOVA. RESULTS: The mean HHI score was 35.44 (n = 237). There was a positive correlation between HHI total score and spirituality (r = 0.267, P < 0.001), and psychosocial support (r = 0.281, P < 0.001). No significant differences were found between HHI total score and respondents who saw themselves as a religious person and the family financial support. There was a significant difference in HHI total scores for a mother who has a disabled child (M = 32.92, SD = 2.75; t (235) = 2.00, P = 0.046) and mothers of a child who do not have any disability besides their cancer (M = 35.59, SD = 4.91). No significant differences were found in the HHI total score and different group of the child's diagnoses and the mother's age or/and child's age. CONCLUSION: Mothers who have a child with cancer with better psychosocial and spiritual support showed a higher level of hope. A thorough knowledge of factors associated with hope in mothers caring for children suffering from cancer could provide a means to further advance the support delivered and the available resources given to the parents, especially the mothers.

Pediatric Palliative Care in Iran: Applying Regionalization of Health Care Systems

Background: Establishing palliative care services is a priority in the health system of Iran. Considering the necessity of integrating these services into the health system, this study aimed to explore the stakeholders' perceptions about the provision of a conceptual framework for palliative care services for children with cancer according to the health system in of Iran. Methods: The present qualitative study was conducted through in-depth semi-structured interviews held with 29 participants including palliative care specialists, policy-makers, health care providers, the parents of children with cancer selected through purposive sampling, between August 2016 and February 2017. Interviews continued until saturation of data. All interviews were recorded, transcribed and analyzed using MAXQDA10 software. Results: The codes extracted from interviews produced the main theme " classes of palliative care services" with the two main categories "comprehensive care" including, strengthening family shelter, maintaining the child in a familiar environment, achieving stability and "establishing social justice" including, easy access to services, financial relief and quality care. Conclusion: Presenting a framework based on level of palliative care services, the findings of this study paves the way for integrating these services into Iranian health system.

Iranian Low-dose Escalating Prophylaxis Regimen in Children with Severe Hemophilia A and B.

Establishing an appropriate prophylaxis regimen for children with hemophilia is a critical challenge in developing countries. Barriers including availability and affordability, catheter-related complications, and inhibitor development risks have led to the introduction of new tailored prophylaxis regimens in different countries. This study emphasizes on the benefits of the Iranian low-dose escalating prophylaxis regimen in a Hemophilia Comprehensive Care Center in Iran. Referred patients with hemophilia less than 15 years of age, who were subject to prophylaxis regimen, are studied retrospectively. A once-weekly prophylaxis regimen of 25 IU/kg was started for the patients primarily. Their prophylaxis regimen was changed to 25 IU/kg twice a week and then 3 times a week when they experienced 3 joint bleedings, 4 soft tissue bleedings, or a 1 life-threatening bleed without a specific trauma history. Overall, 25 patients with severe hemophilia and at least 6-month history of on-demand (OD) treatment were studied. A mean of 1754 IU/kg/yr of coagulation factors, used for OD and prophylaxis purposes, was sufficient to decrease the mean annual bleeding rate (ABR) to 1.86 after prophylaxis. It also reduced the mean hospitalization days and the mean number of target joints to 0.24 and 0.16, respectively. Overall, 19 (76%) patients were continuing their once-weekly regimen at the end of the follow-up. None of the patients needed 3-times-a-week regimen or central venous catheterization and none developed inhibitors in the follow-up. Benefits of the Iranian low-dose escalating prophylaxis regimen prove equal to some of the previous 3-times-a-week prophylaxis regimens in reducing the ABR and hospitalizations.

Thalassemia in Iran: epidemiology, prevention, and management.

PURPOSE: To determine the prevalence and geographic distribution of thalassemia and to evaluate the success of the thalassemia prevention and treatment programs in Iran. METHODS: Data were obtained from the National Thalassemia Registry of Iran, Iranian Blood Transfusion Organization, genetic laboratories involved in prenatal diagnosis, related pharmaceutical companies, and centers performing bone marrow transplantation for thalassemic patients. RESULTS: A total of 13,879 living patients have been registered, mostly from the northern and southern parts of Iran with the median age of 15 years. Twenty-three percent of patients were older than 20 years. The number of newly diagnosed cases has been decreased considerably after the start of the prevention program. Since the introduction of prenatal diagnosis, 2819 couples (2549 fetuses) have been tested, with only 6 false results. Elective abortion was not performed in 10 affected fetuses. Most common mutations detected were IVS II-1 and IVS I-5. In 2003, approximately 25% of the national blood products and 6 million vials of desferal were used for thalassemic patients. Overall, 340 patients have received allogeneic bone marrow transplantation, of those 46 patients deceased. Bloodborne infections have also been decreased significantly owing to the national screening of blood products for bloodborne viral infections. DISCUSSION: Owing to the national prevention program and provided special care, the age distribution of thalassemic patients in Iran is getting adapted to a full prevention and treatment program and life expectancy of these patients has been increased considerably. This shift in the age distribution of thalassemia, a traditionally considered pediatric disease, will face us with new challenges and the health care system should be prepared for this new face of thalassemia.

Growth impairment in beta-thalassemia major: the role of trace element deficiency and other potential factors.

A serious problem in thalassemia major is growth impairment for which several possible etiologies have been proposed. Sixty-seven patients with thalassemia were randomly enrolled into the study, divided into 2 groups with and without growth failure and the correlation between growth failure and the following parameters was evaluated: age, sex, serum ferritin level, serum zinc and copper concentrations, serum copper-zinc ratio, regularity of blood transfusion, and the regularity and duration of chelation therapy. Among all studied parameters, only age, duration, and type of chelation therapy and age of beginning chelation therapy were significantly different between the 2 groups. Binomial multivariate logistic regression showed that the only significant independent correlation was between age and growth failure. A 1-year increase in age is associated with a 1.57-fold increase in the risk of growth impairment. The results of this study indicated that a temporally cumulative damage to growth-mediating mechanisms except those considered here is responsible for growth failure in thalassemia major.