Thalassemia can be described as a group of genetic disorders which are characterized by defective hemoglobin production. It is a common genetic disorder and has more prevalence in India, the Mediterranean region, West Africa and South- East Asia. Patients with thalassemia have defects in the production of either alpha or beta globulin chain of hemoglobin which cause the deficiency of one of these chains while the other chain keeps accumulating within the RBC precursors. This accumulation of unpaired chains and excessive RBC breakdown result in anemia.
Worldwide, for every 10,000 children born, up to 4.4% children are affected by thalassemia. In India, it varies between 1-17% with the average being 3.2%. This implies that, on an average, 1 in 25 Indians carry thalassemia. Distribution of genetic thalassemia is not the same in all parts of India. The prevalence of this disorder has been found to be very high among certain ethnic communities such as Punjabis (Banushalis, Kutchis), Sindhis, Gujarat (Lohans, Mahars), Neo Buddhists, Maharashtra (Kolis and Agris) and Karnataka (Gowdas, Lingayats) etc.1
Among the parents, the stress of having a child with such chronic disorder and treatment take a huge toll on the mental state. Since it is a life-threatening condition which leads to the fear and anxiety in care givers related to the good prognosis. Hope for good prognosis keep them in a state of apprehension, helplessness and frustration including consumption of great deal of time and income in the treatment as well as care of these children. In addition to it, disease process can also lead to adverse effects on the relationship among the family members. Health promotion practices are also used by the parents of thalassemic children in order to promote and maintain the health of their children. For good health promotion practices, parents or caregivers try their best to maintain equilibrium in environmental factors, biological and social factors.2 This study will help us to know about practices that are more commonly followed and will also help the parents to figure out what practices currently they are following and what other practices they can adopt. Even, additional focus is to identify coping strategies used by the caregivers with thalassemic children.
Material and Methods
This was a cross-sectional study conducted on caregivers of children suffering from thalassemia major. A total sample of 70 caregivers of thalassemic children in the age group of 20-60 years that were available during 10 days data collection period in the month of March 2021 in Advanced Pediatric Centre in PGIMER, Chandigarh. The sample for the research study included the caregivers of children who were suffering from thalassemia major excluding the caregivers of the children who were suffering from other disorders.
Ethical approval was obtained from Ethics Committee, National Institute of Nursing Education, PGIMER, Chandigarh. Further, permission was obtained from Head of the Department, Advanced Pediatric Centre, PGIMER to conduct the study. Participant Information Sheet explaining the purpose of the study was handed over to the caregivers of the thalassemic children. Informed written consent was also taken from the caregivers of thalassemic children. Before the administration of questionnaire a brief interactive session was conducted explaining the purposes of the study and thereby encouraging honest answers from the respondents. Researchers emphasized about the confidentiality of the data provided.
Tools used in study were (1) Socio-demographic profile of the caregivers of thalassemic children, (2) clinical profile of the child included age, sex, education, height, weight, BMI, type of diagnosis, year of diagnosis, start of treatment, transfusion year, chelation therapy, use of other therapies, family history of thalassemia major, any genetic counseling received, number of sibling with thalassemia major, status of sibling with thalassemia, (3) Coping Health Inventory for Parents (CHIP) developed by McCubin, Nevin R and Caubie (1996) was used to assess coping behavior of caregivers during care of thalassemic child which has three domains a) Maintaining family integration, cooperation and an optimistic definition of the situation b) Maintaining self- support, self- esteem and psychological stability c) Understanding the medical situation through communication with other caregivers and consultation with medical staff, (4) self developed tool to assess Health Promotion Practices provided by caregivers to their thalassemic children which included personal hygiene, nutrition, elimination, physical activities, psychological and emotional aspects, social aspect, spiritual aspect, socio-economic aspect, body image concerns and treatment adherence.
Tools used in the study were valid and reliable. Data was collected through interview method telephonically from 38 subjects and face to face from 32 subjects.
Data was analysed by using descriptive and inferential statistics in SPSS 26.0,
Table 1 depicts the socio demographic data of the caregivers of children suffering from Thalassemia Major.Majority 47.1% of caregivers were the mothers of the children. Most of the caregivers 45.7% lie in the age group of 41-50 years. In terms of educational status, half 50% of the caregivers were having educational qualification as graduate or post graduate. In regards to occupation, majority 48.6% caregivers were unemployed. Out of all respondents, majority 71.4% were dwelling in urban setting. Majority 68.6% of caregivers lived in nuclear families. Mean of per capita income was 9261.2±12492.6 with range from Rs. 1428.57-1,00,000.
Table 2 depicts the clinical profile of children suffering from Thalassemia. Mean age of children was 13.01±3.48 with range from 4-17 years. Majority 65.7% of these children were in the age group of 13-17 years. Majority 71.4% of children were males. In terms of educational status, majority 64.3% of children were pursuing secondary education. Mean weight of children was 35.196±11.47 with range from 12-66 kg. Mean height was 1.36±0.219 with range 0.90-1.90 metres. Mean years of diagnosis was 8.828±5.917 with range from 1 month to 2.5 years. 62.9% were diagnosed with disease when they were <1 year of age. Mean start of treatment was 8.414±4.786 with range from 1 month to 2 years. More than half 55.7% of children started their treatment when they were <1 year of age. All 100% thalassemic children had family history of thalassemia major. Majority 87.1% parents of thalassemic children had not received any genetic counseling. Mean of number of sibling with thalassemia 0.142±0.826 with range from 0-1. In siblings with thalassemia 5.7% were live, 5.7% were dead, 7.1% were under treatment.
Table 4a Maintaining family integration, cooperation, and an optimistic definition of the situation. 44.3% caregivers found it moderately helpful that their children will get better. Believing that their child is getting best medical care, about 62.9 % of the caregivers found it to be extremely helpful. About 47.1% of caregivers responded as extremely helpful for talking with other parents with same type of situation and learning about their experiences. 45.7% of caregivers responded that reading about the medical problem which concern them is extremely helpful. Talking with the doctor about their concerns and about the condition of children, has been admitted as extremely helpful by 62.9% of caregivers.
Table 4 b: depicts the responses of caregivers in CHIP for sub-items: Maintaining social support, self esteem and psychological stability. Trying to maintain family stability, has been found to be moderately helpful by 67.1% of the caregivers. About 47.1% of caregivers responded as extremely helpful to have their children with medical condition seen at the hospital on a regular basis.
Table c: depicts the responses of caregivers in CHIP for sub- items like understanding the medical situation through communication with other parents and consultation with medical staff. Taking good care of medical equipment at home has been responded to be extremely helpful by 42.9% of caregivers.
Table 7 depicts the health promotion practices among caregivers of thalassemic children. 57 % caregivers ensure that their child uses soft bristles brush for brushing his / her teeth. 43% of caregivers avoid giving iron rich diet to their child, 37% caregivers give vitamin C rich fruits and supplements to their child, 32% of caregivers maintain record of food intake of the child and 42% of the caregivers give folic acid rich food to their child. 50% caregivers ensure that their child wears proper protective footwear while going outside. 32% caregivers routinely get their child’s bone density checkup and 37% caregiver routinely check for any bone deformity in their child. Regarding treatment adherence, 66% caregivers ensure their child takes medicine daily, 64% caregivers maintain proper record of their child medication, 66% caregivers take their child to hospital for regular checkup and follow-up, 67% of caregivers maintain all health records of their child, while 63% caregivers take their child for their regular complete blood count checkup.
Table 8 depicts the correlation between health promotion practices and coping health inventory for parents. The association between study variables (HPP and CHIP) was statistically assessed by Pearson correlation (r-value). The results revealed that there is low positive correlation between HPP and CHIP, i.e. the r-value between HPP and CHIP was +0.078.
The current study was conducted to assess the Health Promotion Practices and Coping Behaviours among caregivers of children suffering from thalassemia major registered in APC, PGIMER, Chandigarh during 2021. The study included 70 participants, the caregivers of children suffering from thalassemia major. This study assessed the coping behaviours related to disease condition and health promotion practices by caregivers to thalassemic children. In the present study it was found that 87.1% of parents of thalassemic children did not receive genetic counselling and only 12.9% received genetic counselling.
The present study was supported by a similar study conducted by Manjoor and Zakar in 2019 to evaluate the socio demographic factors which affects parental knowledge about availability of thalassemia major screening services in Lahore. Results of this research shows that the parents of thalassemic children had enough knowledge about the disease condition and its screening services. It was found that about 91% parents had knowledge about screening services to be done before and throughout the pregnancy and 89% knew about genetic screening to be done before marriage.3 Study done by Biswas et al also found that 52.4% of study subjects had heard about premarital counselling and 50.9% about antenatal screening.4
The results of present study was similar to a study conducted Rao et al in 2004 for evaluation of psychopathology of parents having children with chronic illness and coping mechanisms used by them. They interviewed 30 parents of thalassemic children using semi structured proforma and rated SCL-90-R and mechanisms of coping scales. The results of this study showed that high general distress among parents and high scores on SCL-90-R. In the present study CHIP was used to view the coping methods of caregivers in maintaining social aid, self-regard and psychological stability. It was found that trusting that all will work out has been agreed to moderately helpful by 48.6% of caregivers and believing in God has been responded as extremely helpful by 65.7% of caregivers.2
The present study was supported by a similar study conducted by Dadipoor et al in 2015 to assess the psychological health and coping strategies of parents of thalassemic children in Bandar Abbas using a general health survey by Goldberg and Williams along with the survey of coping methods. The results revealed that the 87% parents trust in God that their problems would be solved, 53% would visit mosques and holy shrines to get mental and spiritual relief and 50.7% make harder attempts to overcome problems.5
In this study, in terms of health promotion practices among caregivers with thalassemic children, it was found that most (95.7%) caregivers always encouraged their child to wash his/her hands before and after meals. In terms of social aspects 80% parents allowed their child to play with other children, 80% allowed their child to participate in group activities and 77.1% helped child in socialising with relatives.
The present study is supported by a similar study conducted by Hatami and Motamed in 2014 to explore life satisfaction in children and adolescents with beta thalassemia major in southwest Iran. The multi-dimensional student life satisfaction scale was used to measure the participant’s quality of life in five domains. The results of this study showed that the total score of five domains i.e. “school, friends, living environment, family and self” were comparatively higher in thalassemic patients than in healthy children and their parents.6
Karmansaravi F et al. (2018) conducted a study on parents with thalassemic children to investigate about their coping behavior. It concluded that the most prevelant coping behavior used by mother and father include “I read more about the medical problems that worry me and turn to god” and “I show that I am strong”.7
The current study concluded that the most expressed coping behavior used by caregivers was “Talking with the doctor about my concerns, about my child(ren) with the medical condition” and “believing that my child is getting the best medical care possible”.
The above studies supported the present study findings. The current study concluded that all the caregivers do follow the health promotion practices and also showed that they have different coping strategies to combat their stress and anxiety regarding the treatment process.
The study findings concluded that learning package can be effective to guide parents/caregivers about the good health promotion practices and positive coping behaviours among caregivers of children suffering from thalassemia major.
The findings of the study revealed that all the subjects had their total HPP score in the range of 75-111 and there is low positive correlation between HPP and CHIP.
The author acknowledges the efforts of students and faculty of National Institute of Nursing Education for their help in carrying out the study.