1. Background
Thalassemia is the most prevalent genetic disorder of hemoglobin throughout the world. This disease is marked by reduced generation of hemoglobin specific chain and severe anemia. Approximately 80% of the affected people are under the age of 18 years (1, 2). Almost 240 million people have thalassemia major in the whole world and 100 thousand children are born with thalassemia major yearly (3).
Beta thalassemia has been reported in more than 60 countries and is more common in countries that have malaria, such as Iran (4). It is estimated in Egypt that 1000 thalassemia patients are born per 1.5 million people yearly and 6% - 10% of the population are carriers (5). In Pakistan, about 5 - 6 million children suffer from the disease or its symptoms and 5000 children affected with thalassemia are born yearly (6).
Iran is also considered as one of the major regions with prevalent beta thalassemia major, especially in the southern parts, namely Sistan and Baluchistan (7). Approximately 2 - 3 million people are estimated to be carriers of beta-thalassemia and 25,000 patients exist in Iran (8). More than 2000 cases of beta-thalassemia major have been documented in Sistan and Baluchistan province (9). It should be noted that almost 700 billion Rials was reported to pay for patients with thalassemia major yearly (2).
The hereditary nature of this disease, changes in appearance, expecting early death, and need for continuous treatment, impose unfavorable psychological impacts on patients and their families (10, 11). Patients with thalassemia are prone to various psychological disorders (12, 13). According to the findings of a study in Iran, 44% of the children affected by thalassemia major had anxiety and depression and 74% had a low quality of life (14).
Behdadi et al. (2015) demonstrated a higher rate of psychological issues and lower quality of life in children with thalassemia major, compared to their other counterparts (8). However, more than 90% of these children continue their lives even possibly until their fourth decade, if they receive suitable cares (15).
Furthermore, mothers of the children with thalassemia major report a high rate of depression (16). Parents of these patients consider themselves as responsible for the disease of their child leading to a feeling of guilty, hopeless, and worried about the health of their children (7). Results of a study in the United States of America showed that thalassemia had a remarkable impact on mental health of the parents. The literature has reported feelings of anxiety, distress, and hopelessness in parents regarding the conditions of their children, especially blood change and disease progress (17).
A qualitative study was carried out on mothers of children with thalassemia major in Thailand. The authors found lack of knowledge of thalassemia, psychosocial problems, and anxiety about future, social support systems, financial issues, and efficacy of health care services as the problems for this group (18). Another study revealed psychological disorders in 54% of the affected children. In addition, the feeling of shock, fear of death, hopelessness, separation anxiety, and issues concerning concentration and memory were reported in 95% of the parents (19).
In two studies, 60% and 40% of the parents had low knowledge of thalassemia (20, 21). The prevalence of major depression was reported as 11.8% among parents in another study (22). Most parents can successfully cope with chronic diseases. On the other hand, some parents do not succeed in coping, the reasons of which include lack of access to valid information about the disease, lack of proper supportive sources, high treatment costs, mental condition, and social issues (3).
Behrouzian et al. (2013) revealed that 91.2% of the children with thalassemia major suffered from a psychological problem and 80.55% of the mothers used improper coping behaviors. Moreover, a significant positive relationship was found between the improper coping mechanisms of mothers and the psychological problems of their children (23).
Recent studies focus on how the families cope with taking care of their children with chronic or wasting diseases, instead of simply describing the load of taking care. Coping is important because it will help the caring team to support the parents in the best way (24). Parents of the children with thalassemia major encounter various issues with taking care of their children. In order to provide the child and parents with proper cares, it is necessary to understand these problems (25, 26).
More effective and efficient coping behaviors of fathers and mothers can be associated with improved quality of life of affected children and their family members (4). Coping behaviors include the behaviors and reactions that people express to balance and control the stress caused by different situations. These behaviors are more highlighted in families with ill children and should be enhanced. Better coping leads to raised quality of life in children with thalassemia major (4).
Sistan and Baluchistan ranks first in the birth of neonates with thalassemia major in Iran. Therefore, the identification of effective and ineffective coping behaviors of parents might allow designing suitable educational-supportive interventions. However, most studies have just investigated the coping behaviors of mothers. In addition, no studies have been carried out in this regard in Zahedan, the capital of Sistan and Baluchistan. The current study aimed to determine the coping behaviors of parents of children with thalassemia major.
2. Methods
This cross-sectional study was performed on parents of 103 children with thalassemia major, who referred to the thalassemia clinic of Hazrat-e-Ali Asghar hospital, Zahedan, Iran in 2016. The inclusion criteria entailed: 1) reading and writing literacy, 2) history of at least one year since starting the treatment of thalassemia for the child, 3) living with spouse, 4) not being responsible for taking care of patients other than the thalassemia patient in the family, 5) not being affected by known psychological disorders and, 6) not using psychic medicine.
The data collection tools included a demographic questionnaire and the coping health inventory for parents (CHIP). The demographic data form encompassed gender, the age of the child, duration of being affected by the disease, number of the affected children in the family, the age of the parents, and educational level of the parents. The CHIP was designed by Mccubbin et al. for assessing the coping behaviors in parents of children with chronic diseases as has been used in several studies (4, 27).
This questionnaire addresses 45 coping behaviors with a four-point Likert scale. Parents mark the behaviors they express and determine the benefit of that behavior in coping with the disease of their child on the Likert scale (3 = very beneficial, 2 = almost beneficial, 1 = a little beneficial, 0 = not beneficial). In case the parents had not performed a behavior, they should specify that “it was not possible” or “it was possible but not performed.” The coping behaviors of this questionnaire were categorized into three patterns. The ‘‘Family integration, cooperation, and optimism’’, ‘‘Social support, self-esteem, and mental stability’’, and ‘‘Medical communication and consultation’’ patterns included 19, 18, and 8 items, respectively. The scores of coping behaviors are in the range of 0 - 57, 0 - 54, 0 - 24, and 0 - 135 for the first, second, and third patterns and the whole questionnaire, respectively.
Mccubbin et al. reported the Cronbach’s alpha of 0.71 and 0.79 for the internal consistency of this tool. Moreover, these authors provided the “normal scores” as a method for comparison (Table 1) (27-29). Nikfarid et al. carried out the validation of this questionnaire in Iran and confirmed its validity and reliability (27). The reliability of the tool was assessed by Cronbach’s alpha of 0.71 in the present study.
Table 1.Normal Scores of Coping Patterns in Parents of Children with Chronic Diseases on Coping Health Inventory for Parents
| Behavioral Pattern | Mothers | Fathers | ||
|---|---|---|---|---|
| Mean ± SD | Range | Mean ± SD | Range | |
| Family integration, cooperation, and optimism | 40 ± 15 | 25 - 55 | 36 ± 20 | 16 - 56 |
| Social support, self-esteem, and mental stability | 28 ± 12 | 16 - 40 | 25 ± 15 | 10 - 41 |
| Medical communication and consultation | 15 ± 7 | 8 - 22 | 12 ± 8 | 4 - 19 |
Informed consent was taken from the parents and the researchers explained the aims of the study. The participants were assured regarding data confidentiality and then, they completed the questionnaires. The individuals were asked to answer the questionnaires in the next blood transfusion session in case they were not present. All the data were analyzed by descriptive statistics (frequency distribution, mean, and standard deviation) and independent t-test using SPSS version 22. Normality of the data distribution was confirmed by Kolmogorov-Smirnov test.
3. Results
According to the findings, the mean age of the parents and children was 33.42 ± 9.62 and 8.42 ± 6.46 years, respectively. Moreover, it was found that 24.3% of the parents had an education level of high school diploma or higher and 57.3% of the children were female. The mean duration of the disease was 6.99 ± 5.09 years.
As demonstrated in Table 2, the mean total score of CHIP was 51.76 ± 24.65 and 54.79 ± 26.41 for mothers and fathers, respectively. The mean scores of the parents had significant differences with each other regarding none of the three behavioral patterns and the total score. Furthermore, there was no significant relationship between the demographic data and the total score of coping behaviors of the parents.
Table 2.Comparison of the Mean Total Scores and the Means of Coping Health Inventory for Parentsa
| Behavioral Subscales | Mothers | Fathers | P Value | t | df |
|---|---|---|---|---|---|
| Family integration, cooperation, and optimism | 21.90 ± 11.46 | 22.12 ± 12.74 | 0.27 | 1.1 | 204 |
| Social support, self-esteem, and mental stability | 20.93 ± 9.97 | 22.62 ± 11.89 | 0.27 | 1.1 | 204 |
| Medical communication and consultation | 8.95 ± 4.57 | 10.04 ± 4.79 | 0.09 | 1.68 | 204 |
| Total score | 51.76 ± 24.65 | 54.79 ± 26.41 | 0.39 | 0.84 | 204 |
aValues are expressed as mean ± SD.
Table 3 indicates the most performed coping behaviors by mothers and fathers for each subscale. For the subscale “Family integration, cooperation, and optimism,” the items of “I read more about the medical issues that worry me” (76.8%) and “I talk to people other than the treatment team” (70.9%) were expressed the most. Regarding the subscale “Social support, self-esteem, and mental stability,” the most common coping behavior in mothers and fathers was “I turn to god” with frequencies of 76.8% and 70.9%, respectively. In addition, considering the “Medical communication and consultation” subscale, mothers and fathers chose “I say I have things that I should thank god for” with the frequencies of 64.1% and 69.9%, respectively.
Table 3.Some of the Most Common Coping Behaviors Expressed by the Parents
| Mothers | Fathers | |||
|---|---|---|---|---|
| Item | No. (%) | Item | No. (%) | |
| Family integration, cooperation, and optimism | I read more about the medical issues that worry me | 79 (76.8) | I talk to people other than the treatment team | 73 (70.9) |
| I made more intimate relationships with my husband | 52 (50.5) | I made more intimate relationships with my wife | 59 (57.3) | |
| I talk to people other than the treatment team | 47 (45.5) | I make close relationships with people | 54 (52.4) | |
| I cooperate with all the family members for things like cleaning the house | 40 (48.5) | I cooperate with all the family members for things like cleaning the house | 48 (46.6) | |
| Social support, self-esteem, and mental stability | I turn to god | 79 (76.8) | I turn to god | 73 (70.9) |
| I bring my child to the hospital regularly for controlling his/her status | 60 (58.2) | I try to stabilize the family | 58 (56.3) | |
| I encourage my ill child to be independent | 56 (53.5) | I believe that my wife supports me and my child | 63 (51.1) | |
| I invite my friends | 55 (53.4) | I encourage my ill child to be independent | 47 (45.5) | |
| Medical communication and consultation | I say that I have things to thank god for | 64 (64.1) | I say that I have things to thank god for | 72 (69.9) |
| I show that I am strong | 59 (57.3) | I show that I am strong | 75 (72.8) | |
| I take care of the medical facilities and medications of my child at home | 41 (39.8) | I believe that my child receives the best medical facilities and services | 45 (43.7) | |
| I believe that my child receives the best medical facilities and services | 38 (36.9) | I take care of the medical facilities and medications of my child at home | 40 (38.8) | |
As Table 4 shows, the least performed behaviors for mothers and fathers in the subscale “Family integration, cooperation, and optimism” were “I talk to the other parents who have my conditions and I learn from their experiences” (63.1%) and “I talk to the health care providers (e.g. nurses, social workers)” (73.8%). Concerning the “Social support, self-esteem, and mental stability” subscale, the least expressed statements included “I develop myself as a human” (51.4%) and “I work extra in my workplace after the working hours” (64.1%). In addition, the least common coping behaviors in the subscale “Medical communication and consultation” were found to be “I go out with my husband/wife as usual” (47.6%) and “I let myself get angry” (58.2%).
Table 4.Some of the Least Common Coping Behaviors Expressed by the Parents
| Mothers | Fathers | |||
|---|---|---|---|---|
| Statement | No. (%) | Statement | No. (%) | |
| Family integration, cooperation, and optimism | I talk to other parents who have my conditions and I learn from their experiences | 65 (63.1) | I talk to the treatment team | 76 (73.8) |
| I talk to the doctor about the problems of my child | 60 (58.2) | I talk to the doctor about medical anxieties of my child | 75 (72.8) | |
| In order to rest, I spend short times out of the home and far from the responsibilities | 44 (42.7) | I talk to the other parents who have my conditions and I learn from their experiences | 43 (41.7) | |
| I eat a lot | 43 (41.7) | I work extra after the working hours | 42 (40.8) | |
| Social support, self-esteem, and mental stability | I develop myself as a human | 53 (51.4) | I work extra after the working hours | 66 (64.1) |
| We do group works with relatives and family members | 50 (48.6) | I spend my time and energy at work | 65 (64) | |
| I focus on my favorite leisure activities, such as music, cinema, and reading | 49 (47.6) | I focus on my favorite leisure activities, such as music, cinema, and reading | 60 (58.2) | |
| When I go to the medical center, I talk to the medical staff | 45 (43.7) | I invite my friends to my house | 47 (45.5) | |
| Medical communication and consultation | I go out with my spouse regularly | 49 (47.6) | I let myself get angry | 60 (58.2) |
| I let myself get angry | 48 (46.6) | I have social activities with my friends, such as party and sports | 59 (57.3) | |
| I have social activities with my friends, such as party and sports | 37 (35.9) | I go out with my spouse regularly | 40 (38.8) | |
| I take care of the medical facilities at home | 35 (33.9) | I read about how the people in similar conditions face the issues | 38 (36.9) | |
4. Discussion
According to the results of the present study, the mean scores of parents did not have significant differences with each other regarding any of the three subscales of behavioral patterns and the total score. In addition, the parents obtained low scores in all the three patterns of coping behaviors in comparison with the normal scores.
These findings demonstrate that most of the parents did not have effective and efficient coping behaviors. Costs, stress, and fear of death account for the mental pressure in the parents of children with thalassemia major. A cross-sectional study of 35 parents indicated that 60.6% were experiencing stress (30). Thalassemia is associated with numerous challenges for the patients and their families concerning the physical, mental, and cognitive aspects, all of which might disturb their psychosocial life (31, 32).
In the current study, the most expressed coping behaviors by mothers and fathers included “I read more about the medical problems that worry me and turn to god” and “I show that I am strong.” The mentioned results are consistent with the study of Nikfarid et al. (2011) that reported “I pray” as the most common coping behavior in mothers (27).
Furthermore, Yazdi et al. (2007) concluded that mothers (33) mostly applied belief and trust in God. These findings demonstrate the role of spirituality in the effective coping with problems caused by the disease that is not surprising considering the religious and cultural bases of Iran. Therefore, it seems that influential spiritual support for these parents should be included in the interventional-supportive programs of the treatment team, especially the nurses.
The least performed coping behaviors were “I talk to the other parents who have my conditions and I learn from their experiences” and “I talk to the treatment team.” In the study of Yazdi et al. (2007), receiving social support was found to have the least frequency (33). Pouraboli et al. (2017) also revealed the lack of supportive network as one of the important factors of the increase in caring load and lack of suitable coping with the disease of children affected by thalassemia major (26). All these findings demonstrate the poor relationships between the parents and treatment team, including the doctors and nurses, for obtaining information, required support, and enhancing the abilities for taking care of children.
The members of the health and therapeutic services team should design and execute suitable interventions based on effective communications through identifying the educational and supportive needs of parents. Providing information leads parents to manage the disease of their children more adequately (34). The improper coping behaviors of the parents result in unfavorable effects on managing the disease of their children and following the treatments (35). The people in charge and nurses should help the parents to enhance their management ability by consultations and administration of suitable interventions (10, 36).
The results of our study demonstrated that reduced social and recreational activities, as well as reduced relationships with spouse and relatives, were among the coping behaviors, which were less expressed by the parents following the disease of their children. The latter findings are in line with numerous previous studies (4, 27, 33).
Furthermore, the findings indicate that the disease of a child is accompanied by a poor supportive network of the parents, including spouse, relatives, and friends. However, the improvement of these relationships plays an important role in better and more effective coping behaviors of the parents, as well as diminished psychological load and caring problem. As a result, providers of health and therapeutic cares must consider enhancing all these factors.
In the present study, no significant relationship was observed between the demographic data of the parents and the characteristics of child’s disease in the CHIP. This result is consistent with the findings of Nikfarid et al. (2011) (27). It should be noted that studies with larger sample sizes are required for a more accurate analysis.
It could be concluded from the findings of the current study that there is no significant difference in the patterns of coping between the parents of thalassemia major children. This is the first study comparing the coping behaviors between the parents. Consequently, further investigations are recommended for interpreting the results and the reasons for differences or indifferences in the coping behaviors of the parents of children with chronic diseases.
The limited sample size and performing the study in only one clinic of Zahedan could be mentioned as the limitations of the present study. Therefore, the results should be generalized cautiously.
4.1. Conclusions
According to the findings of this study, parents gained scores lower than the normal scores in all the three patterns of coping behaviors. Employing proper educational-supportive interventions in caring programs of the children with thalassemia seems to be necessary for improving the coping behaviors of the parents.
For future studies, suitable interventions focusing on the enhancement of supportive-informative sources available for the parents are recommended. The efficacy of these methods in improving the coping behaviors of the parents and the quality of cares for the children with thalassemia major should be further evaluated.
