Introduction: Thalassemia is one of the common hereditary and chronic diseases in the world. Parents who have child with a disease may suffer from their suffering from a child victim’s disability. Therefore, in these families, the ability to return to normal life and adapt to the disease seems to be important. So we conducted this study with the aim of determining the relationship between care distress and resilience in parents of children with thalassemia major.
Materials and Methods: This is a descriptive correlational study that was performed on 165 patients with thalassemia major in Zahedan in 2017 who had entry criteria. Data gathering tools included demographic information form, CBS care sufficiency questionnaire, and Connor-Davidson Suspense Questionnaire. Data were collected by SPSS software version22 and analyzed by descriptive statistics, Pearson correlation coefficient and multivariate linear regression with a significant level of 0.05.
Results and Discussion: The mean age of the parents of children with thalassemia was 36.68± 0.77years old.92.7 percent of them were married and7.3percent of them were separated. There was a significant correlation between the retention of caretaking in these children (p<0.001). The parents of children with thalassemia major are struggling to bring their children back to normal life and to adapt themselves to the fact that their children have a severe illness.
Conclusion: Due to the high level of burden care in parents of children with thalassemia major, it’s necessary to reduce the suffering of burden care, to train and receive health care services by medical staff on these parents, which can improve the quality of life of their children and their children.
Thalassemia is one of the most common hereditary and chronic diseases in the world, which is found in part in all races, and about 60,000 babies are born each year with this disease worldwide (1). The World Health Organization (WHO) has identified the disease as the most common chronic disorder with a genetic pattern in 60 world countries, which annually affects the lives of around 100,000 children. In our country too, the most common genetic disease is thalassemia, and in this regard, the statewide statistics of 22,000 patients with thalassemia major has been published by the Charity Foundation for Special Diseases (2). More than three million beta-thalassemia carriers are found in the country, and about 800 neonates with thalassemia are born annually and are added to this group (3 and 4). Thalassemia, in general, is a kind of genetic disorder in the production of the globin chain. In patients with beta‑thalassemia, there is a complete absence of beta-globin gene (β0 thalassemia) or its relative reduction (β + thalassemia). In alpha thalassemia, the production of alpha‑globin gene is either absent or relatively reduced. The primary pathology in thalassemia stems from the quantity of globin gene production. The most severe form of thalassemia is thalassemia major, in which all relevant chains suffer elimination (5). This disease has caused many difficulties for the patient, the family of the patient, and the health system, and affects various aspects of the family’s life. Although repeated infusion of blood regularly leads to a longer lifespan of patients, the control of this disease becomes a heavy task, and on the other hand, the complications and problems created for the patient’s family cause mental pressure and creation of stress (6). The health and comfort of family members are interlinked, and each member of the family gets directly influenced by the whole family. Hence, the stresses put on each member of the family can affect the whole family. Taking care of the patient takes the energy of the family, and exposes them to physical, emotional, and isolation consequences and causes despair, desperation, fear, embarrassment, and wishing death among them (7, 8). For this reason, the families of these patients are also referred to as “hidden patients” (9). In general, the family is a social system, and the sick child is one of the members of this system, and these two do not only affect each other, but also affect the other members of this system as well. Hence, parents suffer from having sick children, as well as continually seeing their weaknesses and disabilities (10). The process of caring a sick child can lead to caregiver burdens in the child’s primary caregivers. Caregiver burden is a general term used to explain the physical, emotional, and economic cost due to caregiving (11). Caregiver burden is characterized by persistent difficulty, stress, or negative experiences caused by the care provided by the caregiver (12), also, since women are traditionally responsible for caring for their children, the possibility of the occurrence of caregiver burden is felt more among them (13). Thalassemia leaves undesirable effects on the mental health of the patient and his or her family and causes the quality of life among the families of patients with this disease to be disturbed (14 and 15). Family, due to the important role that has for the patient, must be considered as important as the patient himself or herself in the nursing interventions program. Therefore, identifying the needs of the patient’s family helps the nurse to identify the main elements of the crisis, and to employ them in planning appropriate treatment measures. For this reason, identifying the pattern of the suffering of the parents is of particular importance (17). Resilience is defined as the relatively stable capacity of the preservation of psychological well-being, and the ability to create positive experiences and emotions in difficult and troublesome situations (18). Despite the existence of numerous definitions for resilience, what all these definitions have in common is the ability to return to the initial status, and successful adaptation despite the high stress and unpleasant conditions (19). The second key aspect of judging the resilience of individuals is related to the decision making with regard to the quality of adaptation or the development of the individual. The early research in the field of resilience, have defined and identified the most important factors associated with resilience, but a comprehensive understanding of the process of resilience during the development of the individual has still remained unknown (20). In one of these studies, which was conducted by Mashayekhi et al. with the aim of investigating the extent of caregiver burden of the parents of children with thalassemia in Jiroft county, Iran, 160 mothers were enrolled in the study, and the demographic data and caregiving questionnaire were completed for them. In this study, 79 (49%) parents reported moderate to severe levels of caregiver burden. The results showed that the total scores of caregiver burden had a positive and significant relationship with maternal age and had a negative and significant relationship with income. In general, in this study, nearly half of the parents of children with thalassemia major had moderate to severe caregiver burden, and therefore, it was suggested that health authorities and nurses should pay special attention to this problem when dealing with these mothers (23). In another study published by Feeley et al. (2014), the quality of sleep, stress, caregiver burden, and quality of life of the parents caring for children with broncho pulmonary dysplasia was evaluated. 61 children who were cared for by their mothers (mean age of mothers 29.59 years) with a mean age of 19.93 months were enrolled in the study. The mean time of sleep duration reported by the caregivers was 5.8 hours, and there was a significant relationship between sleep quality and the symptoms of depression and stress. Based on the results of this study, sleep quality was the most important predictor of quality of life in these individuals. In this study, with regard to the caregiver burden, it was observed that there was a positive and significant relationship between stress and caregiver burden that in this regard the increased level of stress in parents was associated with higher levels of caregiver burden, which based on the opinion of the authors, this relationship represents the feeling of the caregivers with regard to caring for their children that need caregiving (24).
The incidence of thalassemia, besides having importance for the individual with thalassemia, is of great importance for family and friends, especially parents (2), determining the extent of resilience of these parents against the problems caused by the illness in their children and the relationship of this problem with their caregiver burden seems very important. Therefore, we conducted this study with the aim of determining the relationship between caregiver burden and resilience in the parents of children with thalassemia major in Zahedan in 2016.
Given the inverse relationship between increased caregiver burden and resilience, the education and follow up of health services should be performed by medical staff for reducing the caregiver burden in parents of these families in order to make it easier for them to bring the path of their lives and their children’s lives back to normal. It is also suggested that a future research should focus more on the amount of resilience and the solutions to improve it in the parents of children with special and refractory diseases, because the importance of having high resilience amongst these parents is evident, and this factor can help them continue their lives in a more normal way and with a higher quality.
We would like to acknowledge the efforts of all people in charge in Ali Asghar hospital in Zahedan who helped us in carrying out this project, and dear professors at Azad University of Ali Abad Katoul and Zahedan University of Medical Sciences. This project was presented at the Ethics Committee of Zahedan University of Medical Sciences and was approved by the IR.ZAUMS.OTH.REC.1395.1 code
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