Thalassemia is an inherited blood disorder characterized by defective production of hemoglobin and excessive destruction of red blood cells, which lead to anemia. It is a chronic disease that presents a range of serious clinical and psychological challenges. The effects of Thalassemia on physical health can lead to physical deformity, growth retardation, delayed puberty, and severe complications like heart failure, cardiac arrhythmia, liver and endocrine disorders, and other infections. These problems affect a Thalassemic child’s physical and psychological functioning, leading to emotional burden, hopelessness, and difficulty in social interactions.
Thalassemia can be fatal if proper treatment is not provided to the child. The development of new treatments and clinical management, like regular blood transfusion during the past decades, has markedly improved the prognosis and survival rate of children with Thalassemia. Thalassemia is a chronic disease where a cure is not attainable, and treatment may be prolonged. Therefore, the parents should be reinforced continuously to care for their children with Thalassemia.
The parents, in addition to their typical parenting roles, should assume the roles of care coordinator, medical expert, and system advocate when the children have special health care needs. The mothers play an important role in maintaining optimum physical and psychosocial health, and preventing complications in children with Thalassemia by adopting various measures appropriate to the condition of their children.
According to Indian Academy of Pediatrics (IAP-2000), 15 million people have clinically apparent Thalassemia disorders world-wide. Every year approximately 100,000 children with Thalassemia major are born world over, of which 10,000 are born in India. According to Journal of Biomedica (2000), the major complications of Thalassemia are iron overload (76%), growth failure (65%), cardiac problems (17%), transfusion related infections (4.6%), and endocrine disorders (4.2%).
According to Fuchsa C.J. and Tienboona P. (2007), for reducing complications and maintaining health, it is important to monitor iron levels in children receiving blood transfusion, and parents should pay close attention to iron intake of their children through diet. They also recommended that children under 10 years should keep iron intake to 10mg/day, and should increase the intake of calcium and vitamins. The parents should read food labels carefully, as well as avoid using cast iron cookware.
According to Journal of Pakistan Medical Associations (2008), chronic disorders including Thalassemia Major have a great influence on the child’s performance, and family as a whole causing psychosocial imbalance. The extremely stressful consequence of Thalassemia causes a variety of physical, psychological, and social problems. In fact, the rate of psychiatric disorders such as depression and anxiety in children with Thalassemia is higher than children with other chronic diseases. A child with Thalassemia needs to be supervised continuously to ameliorate consequences of the disease so that he/she is able to lead an active and suitable life. With proper prevention and treatment, many diseases can be controlled before causing dangerous and irretrievable difficulties, and may result in longer life expectancy and improved quality of life.
Yak, Siddikka, Sonugul (2010), stated that the self-esteem and behavior problems in children with Thalassemia depended not only on the child characteristics and associated conditions, but also the parental attitude towards the care of their children. Parents with better knowledge about the illness adhered more readily to treatment regimen. Health care professionals are uniquely positioned to assist the parents in meeting the challenges to promote optimum physical and psychosocial health in these children.
Thalassemia is a potentially fatal disorder, if not adequately treated. It is a serious public health issue throughout the Mediterranean, the Middle East, the Indian subcontinent, south east Asia, and in several other countries (due to migration). In the last 30 years, introduction of regular blood transfusion therapy and effective iron chelating therapy with deferroxime have markedly improved the life expectancy of children with Thalassemia. However, these children faced various physical and psychosocial problems related to this chronic disease and its prolonged treatment regimen.
The investigator, during clinical posting to the blood bank in the VHS, came across many Thalassemic children with complications like iron overload, oro-facial malformations, osteoporosis, stunted growth, recurrent injury and infection, and psychosocial problems like body image disturbances, hopelessness, powerlessness, poor social interaction etc. The investigator also found that the adolescents depended mainly on their parents for monetary and emotional support, because they were anxious about their future health and education.
The investigator, while interacting with the mothers, found that all of the mothers had their own ways of dealing with the problems of their children. Some of these unique methods could be considered appropriate, where as some others could not be considered appropriate. When children have special health care needs, mothers play an important role in finding out their health needs, and in taking measures to manage their child’s chronic condition in the context of everyday life. Therefore, the investigator would like to assess the measures adopted by the mothers to maintain optimum health in their children with Thalassemia.
A study to assess the measures adopted by the mothers to maintain optimum health in children with Thalassemia receiving care in a selected hospital in Chennai.
To assess the measures adopted by the mothers to maintain optimum health in children with Thalassemia.
To associate the measures adopted by the mothers of children with Thalassemia with selected demographic variables.
The process of gathering information through structured interview schedule, and analyzing the responses using statistical methods.
The actions and precautions taken by the mothers to promote optimum health in children with Thalassemia.
The acceptable level of physical, social, psychological well-being of children with Thalassemia.
It refers to any woman who has a child diagnosed with Thalassemia.
An inherited blood disorder, that results in reduced rate of synthesis of one of the globin chains which causes formation of abnormal hemoglobin molecules, which in turn results in anemia.
The study is limited to 60 mothers of children with Thalassemia.
The study setting is limited to one setting.
Study period is limited to 30 days.
Mothers of children with Thalassemia will adopt various measures to maintain optimum health of their children.
The measures adopted by the mothers of children with Thalassemia will be influenced by the selected demographic variables.
The study will help to identify the various measures adopted by the mothers to maintain optimum health in their children with Thalassemia.
The study will help us to analyze the adequacy of information provided by the health care workers, and the need for revising the content and teaching methods.
The study will help the nurses to develop strategies to reinforce the mothers adopting appropriate measures to maintain optimum health, and to empower the mothers who are not adopting appropriate measures.
Study will help the mothers to become aware of their unique role in the care of children with Thalassemia.
Conceptual framework refers to concepts that offer structure or framework of propositions for conducting research. Polit and Hugler (1989) described conceptual framework as a “group of mental images or concepts that are related, but the relationships are not explicit”. The conceptual framework forms the basis of the researcher’s main view, and the common theme of research. It is a visual diagram, using which the researcher explains the specific area of interest.
The conceptual framework adopted for this study is based on Kathryn E. Barnard’s parent-child interaction model. This model focuses on the child’s health, growth, and development, while viewing the parent and the child as an interactive system. Barnard stated that the parent-infant system was influenced by individual characteristics, but was modified to meet the needs of the system. She defined these modifications as adaptive behavior. This model focuses on care giver-parent characteristics, child characteristics, and the interaction between the parent, the child, and the environment.
Child’s clarity of cues
The child sends cues to the parents in the form of physical, psychosocial, and spiritual distress. Parent should be skillful in identifying these cues, and should make appropriate modification of his or her own behavior.
Child’s responsiveness to the care giver.
The child will respond to the care giver both positively, and negatively.
Parent sensitivity to child’s cues
Parent must accurately read the cues given by the child, and should take measures to provide optimum health by modifying their behavior.
Parent’s ability to alleviate the infant’s distress
Parent must recognize the physical, psycho-social, and spiritual distress, and should take appropriate actions to alleviate the distress.
Providing growth fostering situation
Physical growth fostering
Parent should encourage appropriate activities, diet, rest and sleep, preventive measures, treatment and follow-up etc.
Social and emotional growth fostering.
Parent should promote social interaction, play affectionately with the child etc.
Cognitive growth fostering.
The parent should provide stimulations which should be just above the child’s level of understanding.
Environment refers to the inanimate and animate resources like the physical environment, family support, financial resources, and social services and support groups available for the development of the child.
Figure 1: Conceptual framework based on Kathryn Bernard’s parent-child interaction model
A review of related literature is an essential aspect of scientific research. Review of literature refers to an extensive, exhaustive, and systematic examination of publications relevant to the research project. A review of literature was done in order to broaden the understanding and to develop an insight into the selected problem under study. This chapter is discussed under the following headings:
The word Thalassemia is a Greek term derived from thalassa which means the sea (referring to the Mediterranean Sea), and emia which means related to blood. Thalassemia is a disorder characterized by defective production of hemoglobin and excessive destruction of red blood cells. Genetic mutation of the gene encoding for the Î±- and Î²- subunit of the hemoglobin leads to reduced or totally absent synthesis of hemoglobin, which results in abnormal development of red blood cells. This eventually leads to anemia, which is the characteristic symptom of Thalassemia. Î²-Thalassemia Major is the most severe form, which requires regular blood transfusions throughout the life of the afflicted person.
According to the Indian Academy of Pediatrics (2009), Thalassemia occurs most frequently in people of Mediterranean, Middle-Eastern, African, Italian, Thai, Chinese, and Indian origin. Every year 10,000 children with Thalassemia are born in India, which constitute roughly 10% of the total number of children born with such a condition world-wide.
An infant with Thalassemia major appears normal at birth. As the child grows he/she exhibits paleness, fussiness, irritability etc.
At second year of life:
shortness of breath during mild activities
prominent facial bones
malocclusion of the teeth
Iron overload due to regular blood transfusions:
metabolic and endocrine disorders
Hepatitis-B and HIV infections
congestive cardiac failure
Body image disturbances
Financial burden of the family
Regular blood transfusions:
Calcium and folic acid supplementation
Prophylaxis antibiotic therapy
Iron chelation therapy
bone marrow or stem cell transplantation
According to Journal of Hematology (2011), novel modes of therapy have been developed for Thalassemia based on the pathophysiology and molecular pathology of the disease. Currently used treatment modalities are antioxidants, various inducers of fetal hemoglobin (hydroxyurea, erythropoietin, butyrates, hemin), and bone marrow transplantation in its various forms. Many therapeutic methods, such as intrauterine bone marrow transplantation, pre-implantation diagnosis with HLA matching, and gene therapy are currently under research. Future clinical studies will determine the place of newer agents and modalities in improving the quality of life, as well as the life expectancy of Thalassemic children.
It is evident from the discussion so far that Thalassemia is a dreadful disease, which can cause serious complications in almost all the systems in the body. Thalassemia is a disease which needs treatment on a regular basis, and most of the novel methods will increase the life expectancy of the child. It is important to orient the parents towards new treatment modalities available, and reinforce them regarding the need for regular treatment. Therefore, the investigator identified a need to conduct a study on mothers with Thalassemic children.
Gharaibeh H.F. and Gharaibeh M.K.(2011) conducted a study in Jordan to identify the health related quality of life of children with Thalassemia, and they highlighted the negative impact of Thalassemia on the quality of life of these children, especially in terms of physical well-being and school achievement. They also stated that parents, health care providers, counsellors, and school teachers had a very important role in helping these children to overcome their problems and enhancing their quality of life.
The investigator, as a health care provider, felt the need to identify the common physical problems in children with Thalassemia, and assess how parents are helping them to overcome these problems. Therefore, while preparing the questionnaire, the investigator focused more on the measures adopted by the mothers to maintain optimum physical health in their children with Thalassemia.
Rivella S. (2007) stated that, iron overload remained the biggest threat to the health of patients with Thalassemia. The iron overloading in Thalassemia depended on the volume of blood transfused, and the amount accumulated from gut absorption. In fact, this excess of iron is the cause of many serious complications, and can even prove fatal. The organs most severely affected are the liver, the heart, and the endocrine gland. In another study, Ali T. and Khaled M. (2002) conducted a study in the United States of America to assess the practices in Thalassemia management aimed at lowering complication rates among children with Thalassemia Major. They found that the most common disease related complications were osteoporosis and extra medullary hematopoeisis. Another study by Fung E.B. et al (2002) found that the frequency and type of bone disease was affected by the underlying type of Thalassemia and its treatment. Major problems included rickets, scoliosis, spinal deformities, nerve compression, fractures and severe osteoporosis. Multifactorial etiological factors were also detected, such as hormonal deficiency, bone marrow expansion, and desferal toxicity. They stated that nutritional deficiency of calcium might add to the risk.
The data from the above studies indicate that the major complication of child with Thalassemia is iron overload due to frequent blood transfusions, and increased absorption of iron from the gut. Another complication is bone deformity. Though these complications can be reduced by dietary modifications, the children carry a high risk of bone fracture. The data helped the investigator to focus on dietary modifications and protection from injury, while preparing tool.
Shaligram D. et al (2001) conducted a study to assess the psychological problems and quality of life in children with Thalassemia, attending day care services for blood transfusion in India. They concluded that 44% of the children had psychological problems, and 74% had a poor quality of life. Anxiety related symptoms (67%), emotional problems -particularly depression (62%), and conduct problems (49%) were the main findings. From these findings it is evident that children with Thalassemia suffered from many psychological problems. In addition to the children, the siblings, parents, and other family members were also affected. Therefore, the investigator focused on the psychological aspects of child health like social interaction, recreation, coping with psychological problems etc.
Khurana A. et al (2001) conducted a study to assess the psychosocial life aspects of Indian adolescents suffering from transfusion dependent Î²-Thalassemia Major. The study found that the adverse impact of Thalassemia was perceived mainly in the domains of education (70%), and sports (72%). Most Thalassemics were not satisfied with their body image, and almost all the study subjects felt that the disease did not affect their family or social relationships. The adolescents were anxious about their future health and education. Majority (80%) of the subjects did not discuss their disease and its related problems with their friends. They mainly depended on their parents for monetary and emotional support. The above findings reveal that adolescents with Thalassemia faced problems related to education, occupation, body image etc. Therefore, the investigator formulated separate questions to assess these problems.
Spyridoula L. and Stavroula B. (2000) stated that Î²-Thalassemia is a chronic disease causing serious symptoms to the patients, and considerable burden to their families. Their study revealed that siblings of Thalassemic patients were found to have significantly more psychiatric disorders and impaired psychosocial functioning.
Dragonas T. J. et al (1996) conducted an exploratory study to assess the psychosocial problems and adjustment of children with Thalassemia and their families. They compared the psychosocial problems, and family adjustment to the effect of illness Father’s low education level and the presence of major medical complications were predictors of poor family adjustment.
The data from the above sources helped the investigator to identify various psycho social problems faced by the children with thalassemia and this helped the investigator to focus more on these areas while preparing tool for the study.
Emine E. et al (2012) conducted a descriptive study in Turkey to determine the types of complementary, and alternative medicine used among children with Thalassemia, and concluded that 82.5% of the parents used one or more of the complementary and alternative medicine, 61.8% used prayer/spiritual practice, 47.4% used nutritional supplements, and 35.1% used animal materials. They also stated that in order to sustain medical treatment and better prognosis of Thalassemia, it was important for nurses to consult with their patients and parents regarding the use and potential risks of some of the complementary and alternative medicine.
Gulli L.F. et al. (2005) stated that monitoring iron levels in the body is essential. Individuals receiving blood transfusions should keep total body iron levels at 3-7mg of iron per gram of body weight. In addition, these individuals should pay close attention to the iron intake through their diet. It is recommended that children under the age of 10 keep dietary iron intake to 10 mg/day or less. Individuals aged 11 or older should keep dietary iron intake at 18 mg/day or less. Children should avoid using foods high in iron, including beef, beans, liver, pork, peanut butter, infant cereal, cream of wheat, prunes, spinach, raisins, and leafy green vegetables. Individuals should read the food labels carefully, and avoid using cast iron cookware that can infuse more iron into the food during cooking.
Individuals with Î²-Thalassemia major are at risk for developing osteoporosis. Increased dietary intake of calcium and vitamin D can help increase the storage of calcium in the bones, thus making the bones stronger, and decreasing the risk of osteoporosis. Alarcon P.A. et al. (2002) conducted another research study on the effect of tea as an inhibitor of non-heme iron absorption. Iron absorption increased as the hemoglobin concentration decreased, although iron absorption was much higher at any given hemoglobin level in subjects with Thalassemia. They concluded that, tea produced a 41%-95% inhibition of iron absorption. Since patients with Thalassemia intermedia may absorb a large percentage of dietary iron, inhibitors of iron absorption, such as tea, may be useful in their management.
The study results mentioned above highlighted the importance of restricting dietary intake of iron, and the need to increase the intake of calcium and vitamins. These data helped the investigator to prepare questions related to dietary practices adopted by the mothers to maintain optimum health in their children.
Ali S. and Sabih F (2012) conducted a comparative study among parents of children with Thalassemia, and those of normal children to assess the care-giver experience in Pakistan. They revealed that parents of Thalassemic patients experienced higher degrees of distress when compared with parents of normal children. The frequency of psychological distress leading to parental stress was higher due to the multiple problems the parents had to face while going through the rigorous and painful treatment procedures of Thalassemia. The parents had to face many concerns like the psychosocial adjustment of the child, financial problems, provision of treatment, traveling, and other social problems.
Pruthi G.K. and Singh T.B. (2010) conducted a comparative study among care-givers of children with Thalassemia, and cerebral palsy in India. The results of this study indicated that psychosocial burden was high, and overall perception of quality of life was very poor and dissatisfactory among the care-givers of children with Thalassemia.
In another study, Aydinok Y. et al (2005) stated that the increased risk of psychosocial and behavioral problems in Thalassemics, and their parents indicated the importance of a lifelong psychosocial support for the prevention of mental health issues. The patients, and their parents who were more conscious of the illness, were more worried but more compliant with the therapy and needed stronger psychiatric support.
The data on the experience of the care-givers helped the investigator to formulate a conceptual framework based on Kathryn Bernad’s child-parent interaction model. This model proposes that a sound body, and mind of the parent will help them to identify the needs and problems of their child as early as possible. Psychological distress of parents can interrupt the interaction with the child. The environmental component in this model explained the financial, social support groups that affected the child’s health.
Suksiri P. and Arunee J. (2000) conducted a study to assess the life experiences of Thai families with Thalassemic children, and found that most mothers did not know about Thalassemia or its complications. They also found that mothers had strong concerns about the present status, and the future of their children. The major concern was the need for their children to be strong and healthy. The treatment of Thalassemia was very strenuous, and caused suffering for both parents and children throughout the child’s life.
It is clear that as health care providers, we have to reinforce the parents for regular treatment. This information helped the investigator prepare questions related to measures adopted to maintain regular treatment and follow up.
Tiantis J. et al (1982) conducted a study to assess the family reactions, and their management in a parents’ group with Î²-Thalassemia. They found that the parents displayed various emotions (guilt, death anxiety, denial of feelings etc.), and their behavior towards the child was inappropriate (overprotective, conspiracy of silence). This could affect child’s psychosocial development, and lead to tensions within the family.
The data from the above studies indicate that the parents of children with Thalassemia experienced psychological problems which were similar to, or more than that of their children. The mental status of the parents could affect the children in many ways. Therefore, the investigator felt the need to explore further on these aspects.
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